Last night we were up with Ellie all night vomiting. Again. Her not sleeping through the night has started to be a real factor in our home, and incidents such as this can throw me into a feeling of despair quite quickly. Besides being just plain tired of doing this for over two years, I am beginning to believe that her vomiting episodes send me into a sort of PTSD.
She went to bed complaining 'owie' and not wanting to lay flat, and it was somewhere around 12 am (I think maybe?) that she started vomiting. The next two hours consisted of thoughts like this:
I'm so tired.
So much vomit.
Is it the acorn squash after all?
Does she have the flu which she has never had?
I'm so behind on life.
I need sleep.
What is the matter with her?
She is going to wake up Moriah.
Is this an FPIES reaction?
Is the beef broth bad?
Jason really needs his sleep.
Is she hurting?
Did she eat something we didn't know?
I really need to get some work done.
Please, God don't let it be the acorn squash.
Why is she STILL throwing up?
I never even had a chance to get ready for bed.
She doesn't have a fever.
on and on....
By 4 a.m. I was just standing and sobbing. Ellie looked at me with her sunken eyes and said 'ok? tchu sad?', and I thought, 'holy cow woman. Get a grip!'
As I spend the day doing laundry I am able to step back and look at things a little better. And I am pretty convinced there is a fear factor that becomes engrained into every FPIES momma who has watched vomit after vomit after vomit without having answers. I can not count the amount of times I heard 'try this' or 'try that' or 'we really dont know'. And 90% of the time she reacted exactly the opposite of what they said. Thank the Lord we had a pediatric GI who said 'yes some are sensitive enough to react to soy lecithin', and an allergist who said 'yes she could be reacting to corn syrup'. Many doctors will argue those realities. When dealing with life, it is so.much.easier....to pass the buck and let Dr. Anyone tell you what to do. It is so much easier to use canned nutrition, or follow a check list, or just go with the flow of what is expected. And wait for the symptoms to go away.
Choosing anything else is hard work, and frankly quite petrifying.
But as a colleague and friend continues to remind me - nothing easy is worth it; its the hard stuff that shows our Maker. And it is no coincidence that it *always always always* happens after an event that causes us to feel blessed and uplifted, such as receiving 91 pounds of donated elk bones, or getting a safe new food for Ellie after months of waiting.
And the vomit? Too much beef fat in her bottles. Unlike people who feed themselves, Ellie is subject to whatever ratio we make regardless of what her body needs at that moment. It has been consistent that whenever we feed her a beef broth with too high of a fat content she stops digesting and we are unaware of the poor ratio until she begins projectile vomiting it all over the house.
I knew that was most likely the culprit. And today we are all recovering. But sometimes...I let fear take over.
Showing posts with label broth. Show all posts
Showing posts with label broth. Show all posts
Friday, December 2, 2011
Thursday, September 22, 2011
Bok Bok
We have 14 chickens that are about 6 weeks old. They are currently on a soy free and corn free feed, and I am occasionally feeding them grain free feed that I have created. Within the next couple weeks I hope to have them grain free. The goal is to get some laying hens for grain free eggs. My thought today: if we have gone through all of this and she can not have eggs I will certainly kick something.
We have a freezer full of soy and corn free chickens, and tried the first one out this week. After one day of just the broth and no meat, Ellie stopped pooping. Is it the grain they were fed? Is she just having a hard time with a new meat? is it....? Here is where my brain is stretched. Here is where FPIES 'pull the food' clashes with GAPS. Do we push through? Do we stop? Is she having an IgE or IgA allergic response? Is it only intolerance that can be pushed through? Is it the grain? The never ending guessing game.
Ellie has been on the same few foods for several months now. She gets approximately 8 to 9 cups of food a day. In that giant half gallon jar I mix 2 to 3 cups of meat puree, 1-2 cups skinned and boiled zucchini puree, and the rest bone broth. In addition to that she gets 1 scoop of Gut Pro probiotic, 1/2 teaspoon fermented cabbage juice, and 1/8 teaspoon of nystatin powder mixed in to her bottles daily. We also include liver. We have spent an incredible amount of time ( a couple months) trying to get raw egg yolk into her diet without success. It is time to try some new things.
The constipation from the chicken is giving me the impression that the egg yolk will be a hang up, too. Other moms have said they had to start with one drop of egg yolk a day in order to build up the tolerance slowly.
I think we are going to change our plan of action. Instead of continuing to trial one thing at a time for several days, and attempt to build up egg, for example, we will add a very small amount of something, and the move on to something else. She has eaten a few things on 'accident', like a raisin last week, without large response at all. This shows healing has been taking place, so time to start over. Back to the beginning to take a look at some of the things she had a hard time with before. Healing takes time, and clearly Ellie will need lots of just that. But I am hopeful! Another FPIES mom and friend has progressed her twins at an amazing pace with GAPS, and I am hopeful for Ellie. One main difference - her twins do not have a corn intolerance. If you would like to hear their amazing story you can read here: An Advocates Tale
So for now, we try to push through the chicken constipation by increasing the probiotic and fermented cabbage juice, and then choosing a new vegetable to try. Here we go!
We have a freezer full of soy and corn free chickens, and tried the first one out this week. After one day of just the broth and no meat, Ellie stopped pooping. Is it the grain they were fed? Is she just having a hard time with a new meat? is it....? Here is where my brain is stretched. Here is where FPIES 'pull the food' clashes with GAPS. Do we push through? Do we stop? Is she having an IgE or IgA allergic response? Is it only intolerance that can be pushed through? Is it the grain? The never ending guessing game.
Ellie has been on the same few foods for several months now. She gets approximately 8 to 9 cups of food a day. In that giant half gallon jar I mix 2 to 3 cups of meat puree, 1-2 cups skinned and boiled zucchini puree, and the rest bone broth. In addition to that she gets 1 scoop of Gut Pro probiotic, 1/2 teaspoon fermented cabbage juice, and 1/8 teaspoon of nystatin powder mixed in to her bottles daily. We also include liver. We have spent an incredible amount of time ( a couple months) trying to get raw egg yolk into her diet without success. It is time to try some new things.
The constipation from the chicken is giving me the impression that the egg yolk will be a hang up, too. Other moms have said they had to start with one drop of egg yolk a day in order to build up the tolerance slowly.
I think we are going to change our plan of action. Instead of continuing to trial one thing at a time for several days, and attempt to build up egg, for example, we will add a very small amount of something, and the move on to something else. She has eaten a few things on 'accident', like a raisin last week, without large response at all. This shows healing has been taking place, so time to start over. Back to the beginning to take a look at some of the things she had a hard time with before. Healing takes time, and clearly Ellie will need lots of just that. But I am hopeful! Another FPIES mom and friend has progressed her twins at an amazing pace with GAPS, and I am hopeful for Ellie. One main difference - her twins do not have a corn intolerance. If you would like to hear their amazing story you can read here: An Advocates Tale
So for now, we try to push through the chicken constipation by increasing the probiotic and fermented cabbage juice, and then choosing a new vegetable to try. Here we go!
Thursday, July 7, 2011
The New GI
We had the long awaited (and well stressed about) appointment with the potentially new Pediatric GI today. In order to miss rush hour traffic we were up before dawn, and loaded in the car as a family. I was pleased to have found an appointment with a leading doctor from Oakland's Children's Hospital who also held an MD in Nutrition. An MD in GI and an MD in Nutrition - how could we possibly go wrong there?? Well, ...we most likely have a doctor to keep, but not the amazing nutrition based focus I had hoped for.
Some of the highlights:
- She did not have immediate access to Ellie's entire medical history, so she only saw our brief notes and those from the nurse. She walked in and said 'what is going on?' and I said 'FPIES'. She said 'I suspected.' (To which I laughed and said well that is progress!) To which she then said 'well she is too young for EE', to which I thought 'CRAP. not as much progress as I thought.'
- She said that meat has almost everything you need so Ellie can be fine like this for a very long time, if needed. (It was just nice to hear a doctor say that outloud)
- She asked if she was on a multi-vitamin, to which I said no because we have not been able to avoid corn, to which she said 'well, yes I would imagine not'. (Another nice thing to hear a doctor of her 'level' say)
- She said that the only vitamin to be concerned of at this point was vitamin C, and suggested I do a home skin test of foods high in vitamin C before feeding it to her. (A doctor acknowledging skin test! woot!)
- Ellie continues to grow and gain weight, and is now happily over 30 pounds! (*big mama grin*)
- I said my only real concern was the continued distended belly and so she offered an xray to see what it showed. (I appreciated the proactive approach)
What else...
- She irritated the crap out of me by saying 'we just don't know' about 50 times as an answer to most of my questions.
- She had the nerve to say 'she WILL get better at some point' but not comment on what I am currently feeding her, her history of illness, or know anything about GAPS. (I think this was the same old 'they grow out of it' version)
- When I informed her that Ellie's allergist wanted her off the formula due to the APT corn reaction, she asked if there was corn in the formula (the MD in Nutrition didnt know *all* formulas have corn?). And when I said the previous GI and allergist were in disagreement on whether or not the corn in the hypoallergenic formula could even cause a reaction, she responded with 'right.'. (is that another right, we don't know? right, you can react? right, we always disagree?....?)
- When I asked about missing nutrients she said 'I can send you to a dietician at the hospital for more information on that'. Whoa. I certainly thought that Nutrition MD counted for something..no?
- I made it clear that we fed Ellie grass-fed, organic, corn and soy free meat several times, and then directly asked her thoughts on the matter. I told her I could not find medical evidence of the need but was doing it to be cautious. Did she think it was necessary? The response - 'Well, I would try and see how she responds.' (is that acknowledgement that yes the corn and soy is present in the meat, or is that another answer of we just don't know?)
- She asked if she had been scoped. I gave her the list and the information on the dissacharide test, to which she instantly responded 'well that could be error.' I think my transparancy showed how irritated I was to that response. She then said, 'well, the sample was either handled incorrectly, or her intestines are just that completely damaged. No one is born that way. That is too severe.' (THIS was a very interesting thing to say regarding nutrition and genetics. I firmly believe the test was accurate, and the corn formula played a leading role. But did not choose to discuss further.)
- and oh yeah, she asked why all of the Sacramento area ped. GI patients were flocking to their office in Palo Alto. And when I decided to start telling her she cut me off to respond 'yeah, I know (insert the crappy GI we ditched here)'. I have no idea if that was her way of confirming, or if she was saying 'back off my buddy', but it was more politics in medicine. Ugh.
And that is about all I can remember. I have her email, and am waiting on the xray results. I am headed back to my GAPS book to see what it says about vitamin C, and we keep plugging forward. At least we have a GI on board in the event of an emergency who is experienced and knowledgeable of FPIES.
Some of the highlights:
- She did not have immediate access to Ellie's entire medical history, so she only saw our brief notes and those from the nurse. She walked in and said 'what is going on?' and I said 'FPIES'. She said 'I suspected.' (To which I laughed and said well that is progress!) To which she then said 'well she is too young for EE', to which I thought 'CRAP. not as much progress as I thought.'
- She said that meat has almost everything you need so Ellie can be fine like this for a very long time, if needed. (It was just nice to hear a doctor say that outloud)
- She asked if she was on a multi-vitamin, to which I said no because we have not been able to avoid corn, to which she said 'well, yes I would imagine not'. (Another nice thing to hear a doctor of her 'level' say)
- She said that the only vitamin to be concerned of at this point was vitamin C, and suggested I do a home skin test of foods high in vitamin C before feeding it to her. (A doctor acknowledging skin test! woot!)
- Ellie continues to grow and gain weight, and is now happily over 30 pounds! (*big mama grin*)
- I said my only real concern was the continued distended belly and so she offered an xray to see what it showed. (I appreciated the proactive approach)
What else...
- She irritated the crap out of me by saying 'we just don't know' about 50 times as an answer to most of my questions.
- She had the nerve to say 'she WILL get better at some point' but not comment on what I am currently feeding her, her history of illness, or know anything about GAPS. (I think this was the same old 'they grow out of it' version)
- When I informed her that Ellie's allergist wanted her off the formula due to the APT corn reaction, she asked if there was corn in the formula (the MD in Nutrition didnt know *all* formulas have corn?). And when I said the previous GI and allergist were in disagreement on whether or not the corn in the hypoallergenic formula could even cause a reaction, she responded with 'right.'. (is that another right, we don't know? right, you can react? right, we always disagree?....?)
- When I asked about missing nutrients she said 'I can send you to a dietician at the hospital for more information on that'. Whoa. I certainly thought that Nutrition MD counted for something..no?
- I made it clear that we fed Ellie grass-fed, organic, corn and soy free meat several times, and then directly asked her thoughts on the matter. I told her I could not find medical evidence of the need but was doing it to be cautious. Did she think it was necessary? The response - 'Well, I would try and see how she responds.' (is that acknowledgement that yes the corn and soy is present in the meat, or is that another answer of we just don't know?)
- She asked if she had been scoped. I gave her the list and the information on the dissacharide test, to which she instantly responded 'well that could be error.' I think my transparancy showed how irritated I was to that response. She then said, 'well, the sample was either handled incorrectly, or her intestines are just that completely damaged. No one is born that way. That is too severe.' (THIS was a very interesting thing to say regarding nutrition and genetics. I firmly believe the test was accurate, and the corn formula played a leading role. But did not choose to discuss further.)
- and oh yeah, she asked why all of the Sacramento area ped. GI patients were flocking to their office in Palo Alto. And when I decided to start telling her she cut me off to respond 'yeah, I know (insert the crappy GI we ditched here)'. I have no idea if that was her way of confirming, or if she was saying 'back off my buddy', but it was more politics in medicine. Ugh.
And that is about all I can remember. I have her email, and am waiting on the xray results. I am headed back to my GAPS book to see what it says about vitamin C, and we keep plugging forward. At least we have a GI on board in the event of an emergency who is experienced and knowledgeable of FPIES.
Monday, June 13, 2011
No Going Back
This week I have been going through the pantry and reorganizing, cleaning, and attempting to get it under control. Our switch to a grain-free home has changed some of my needs, and a year of crazy has made every closet in the house an out of control mess. As I was moving items, tossing items, and debating what to put where, I spied a shelf full of Nutramigen AA. Formula. Corn. Nutrients that sustained Ellie along with damaging corn that set her back months, all rolled into a can.
I began grabbing the cans and hauling them into a pile in the hallway. Good riddance! And then I stopped. I was struck by fear. Just this week we cancelled the prescription and will not be getting any more. Letting go of this should be great, and signify progress. But I stopped and second guessed myself. What if we need it? What if she has to go back on it? What if something happens? What if ? What if? WHAT IF????
I can not live in the what if. I also can not let myself go back to the treatment that did NOT work for Ellie. No matter how crazy mainstream may think it is, I must stand firm, and we must plug forward. There is great fear in letting go of that formula. It was nutrition in a can - how much easier can you get than that?!? We could still go places, we could do things, we could pack it up and hit the road. Now, not so much. And the pull towards the 'easy' will always be there. But I now know too much, and there is simply no going back.
I began grabbing the cans and hauling them into a pile in the hallway. Good riddance! And then I stopped. I was struck by fear. Just this week we cancelled the prescription and will not be getting any more. Letting go of this should be great, and signify progress. But I stopped and second guessed myself. What if we need it? What if she has to go back on it? What if something happens? What if ? What if? WHAT IF????
I can not live in the what if. I also can not let myself go back to the treatment that did NOT work for Ellie. No matter how crazy mainstream may think it is, I must stand firm, and we must plug forward. There is great fear in letting go of that formula. It was nutrition in a can - how much easier can you get than that?!? We could still go places, we could do things, we could pack it up and hit the road. Now, not so much. And the pull towards the 'easy' will always be there. But I now know too much, and there is simply no going back.
Thursday, June 9, 2011
More Than Poo
Did you take a picture of that poo? What did it look like? What do you think of this poo? What was the smell? Did it burn her? Did you file it? Make notes on the fridge. Was there mucous? oooooh the life of FPIES. You get the top half (vomit) and the bottom half (poop). And the joke among moms of PI kids is that we have poop portfolios. We take them to the doctor with us. We compare. We use them to guide food choices for our kids. We become obsessed!
And I am having trouble shaking the obsession. There. I said it! I wait for the poop, I fear for the poop, and when it comes out normal I do a dance! The problem? Poop is a good indicator of a lot, but not the indicator of everything. We have seen no-so-good-poops that have been die off, been a one time thing, and those that have ended in full blown FPIES. The catch seems to be the stage of healing.
We have not seen a full blown FPIES reaction since we started the broth. I believe the reason is because we don't feed her foods that she could react to, and that her intestines have begun to heal. GAPS has taken the science behind food digestion and spelled it out in a path. Jump here - go there- try this, if not then that means try that. If she has trouble because of the fiber or the sugar content of a vegetable, we immediately pull it and know that means she is not ready. The problem is, sometimes things don't give a reaction and that does not mean she is ready for them. This is where the poop test fails me.
For example, a few days ago I let Ellie carry around a larabar. Much later I realized she had been sucking on it open, and who knows for how long. I took it away, and then waited. No reflux. No poop. But she woke up screaming from a nap and then wanted to be held for about an hour. After that, she was on with life. The next poo, no signs of a thing.
Another time she cheeked a few sunflower seeds in the shell, sucking and chewing them to death. No reaction. Not a single thing. And another, she ate a sticker. Nothing.
Before GAPS I would have done a dance and said how exciting that she could tolerate and have a new food and fed her sunflower seeds. Or wondered about the sticker adhesive and if she was doing better with corn. But what I now know is that it has everything to do with the stage of healing she is in, and that she is not ready to eat those things regardless of what her poo or anything else looks like. If she cant tolerate the fiber in onion, she most certainly can not tolerate the tough to digest sunflower seed. But what we can celebrate is that she has healed enough that these small exposures do not send her reeling into a full blown FPIES episode.
The longer Ellie has been on broth, the more amazed we are. Her little intestines were so severely damaged that she has been unable to tolerate any vegetables at all. She can handle boiled and skinned zucchini as long as the seeds are small, because it does not provide too much fiber for her system. Unless we put too much in her bottle, and then we see her struggle to digest it. But that is it. We have not been able to get onion or carrot or other squash in her without problems. And then came the egg yolk. (GAPS protocol states that in severe cases that no vegetables can be tolerated, raw egg yolk should be introduced slowly after doing a sensitivity skin test) Raw egg yolk starting very small, and now up to half a teaspoon in each bottle. Without it she has unhealthy poo, and with it she had her first normal poo that we ever have seen in her whole gosh darn life. Normal poo!
The egg yolk seems to have provided those remaining nutrients to pave the way for healing, just as promised. She enjoys daily or every other day normal looking stools. (yes I did say enjoy!) So next I went back to onion. To be sure that it was the fiber she had trouble with and not the onion itself, I boiled onion into her broth and then strained it out. She did fine with the new onion flavored broth! And now it is time to try something new again. So we move forward. Very slowly. Focused on healing and not re-damaging. Gentle foods, easy to digest foods, and allowing for time.
And I am having trouble shaking the obsession. There. I said it! I wait for the poop, I fear for the poop, and when it comes out normal I do a dance! The problem? Poop is a good indicator of a lot, but not the indicator of everything. We have seen no-so-good-poops that have been die off, been a one time thing, and those that have ended in full blown FPIES. The catch seems to be the stage of healing.
We have not seen a full blown FPIES reaction since we started the broth. I believe the reason is because we don't feed her foods that she could react to, and that her intestines have begun to heal. GAPS has taken the science behind food digestion and spelled it out in a path. Jump here - go there- try this, if not then that means try that. If she has trouble because of the fiber or the sugar content of a vegetable, we immediately pull it and know that means she is not ready. The problem is, sometimes things don't give a reaction and that does not mean she is ready for them. This is where the poop test fails me.
For example, a few days ago I let Ellie carry around a larabar. Much later I realized she had been sucking on it open, and who knows for how long. I took it away, and then waited. No reflux. No poop. But she woke up screaming from a nap and then wanted to be held for about an hour. After that, she was on with life. The next poo, no signs of a thing.
Another time she cheeked a few sunflower seeds in the shell, sucking and chewing them to death. No reaction. Not a single thing. And another, she ate a sticker. Nothing.
Before GAPS I would have done a dance and said how exciting that she could tolerate and have a new food and fed her sunflower seeds. Or wondered about the sticker adhesive and if she was doing better with corn. But what I now know is that it has everything to do with the stage of healing she is in, and that she is not ready to eat those things regardless of what her poo or anything else looks like. If she cant tolerate the fiber in onion, she most certainly can not tolerate the tough to digest sunflower seed. But what we can celebrate is that she has healed enough that these small exposures do not send her reeling into a full blown FPIES episode.
The longer Ellie has been on broth, the more amazed we are. Her little intestines were so severely damaged that she has been unable to tolerate any vegetables at all. She can handle boiled and skinned zucchini as long as the seeds are small, because it does not provide too much fiber for her system. Unless we put too much in her bottle, and then we see her struggle to digest it. But that is it. We have not been able to get onion or carrot or other squash in her without problems. And then came the egg yolk. (GAPS protocol states that in severe cases that no vegetables can be tolerated, raw egg yolk should be introduced slowly after doing a sensitivity skin test) Raw egg yolk starting very small, and now up to half a teaspoon in each bottle. Without it she has unhealthy poo, and with it she had her first normal poo that we ever have seen in her whole gosh darn life. Normal poo!
The egg yolk seems to have provided those remaining nutrients to pave the way for healing, just as promised. She enjoys daily or every other day normal looking stools. (yes I did say enjoy!) So next I went back to onion. To be sure that it was the fiber she had trouble with and not the onion itself, I boiled onion into her broth and then strained it out. She did fine with the new onion flavored broth! And now it is time to try something new again. So we move forward. Very slowly. Focused on healing and not re-damaging. Gentle foods, easy to digest foods, and allowing for time.
Wednesday, June 8, 2011
Revelations
Last week I had the chance to talk to a friend who I do not get to speak with often enough. As we caught up briefly on the phone she made a comment that I hear often. It goes something like "I don't know how you do it....that is why I was not given a chronically ill child". And I gave her the response that tells the truth: "I don't."
This comment from supportive friends catches me every time. I usually run past it, but this time it stuck. I spent the next week reflecting, and realizing one thing that God always promises: in the toughest times we stretch the most, see Him the most, and He grows us the most. God has used FPIES to change ME.
Today I reflect. And the pain is still very real.
February, 2011.
Think...think...think...think. I have to think. I'm not sure what to do. I'm not sure what I am missing. Who am I kidding? The doctors don't know. The specialists don't know. She has stopped growing and is beginning to look pastey. She has never had trouble with that before. My head hurts from trying to think this through. I know what they are thinking, and why they expressed concern. They think she is entering her failure to thrive. I know it. I know that I see a sick little girl. This formula is supposed to be helping her but it is killing her. I know it. I can feel it. I hurt for her. I have to cry.
Think...think...think...think...Allergist: We have to get her off the formula. But just almond milk? Seriously? How am I to respond to a treatment plan that is prefaced with 'she has about a month before we need to be worried about the malnourishment'. That is just not ok! But the GI says there is no medical proof that she can react to the corn in the formula...but this time he is more silent. This time he is less sure and this time he has a different look in his eyes. He always had more to say than this time. Think...think...think...think...And the nutritionist. Give her a multi vitamin made from corn and just start feeding her? What kind of sudden plan is that? Our best hope is lamb? This makes no sense. She is so sick. She is crying again.
I pick her up. She is weak, losing weight. Dark circles under her eyes and she is vomiting again. She is starving. I am holding my baby -as-she-is-starving. This is the United States! This is not some third or fourth world country where I have no food to give her! What is the matter with these people? What sick baby can live on homemade almond milk alone!
I put her back to bed. What time is it? I have to do something. I can not just sit here and cry. Why can't someone just tell me? Help.....we need help!
On my knees beside my bed. Sobbing. I can't stop. Dear Jesus I need to feed my baby. Dear God help me. Help us. Please please help HER. What do I do? The pain.....to not feed her.....Jesus PLEASE..please, please.
All I could do was repeat it over and over again. Please, please, please, please.
What? I listen again. 'I have already given you hope.' Is that the answer?
I dry my face and head to the computer, and type out an obnoxious and desperate email full of medical jargon and doubt, begging a doctor half way around the globe for help - mother to mother - challenging her experience and expertise, and regurgitating medical studies about the inability to digest or tolerate proteins. Relying on this last glimmer of hope I was able to go to sleep.
In my morning I drug myself to the computer, and what did I see? An email! Already? Remarkable! How could that possibly be? This woman could not possibly have the time.
With her help I have fumbled my way into getting Elianna on to actual FOOD, and the introduction stage of Gut and Psychology Syndrome (GAPS). Her biggest hurdle with me has been to un-do many of the things I have 'learned' about protein intolerance, food allergy, and food sensitivity. And I could never have been more grateful. What she provided was hope. Right in the body of her email. Don't worry. You can heal her. She will be fine. Who has ever even dared to say those words to me before now?
I started this post by mentioning how FPIES has changed ME. More than nutrition, and medical jargon, and becomming a real foodie, I have learned a most important lesson. I was humbled and brought to my knees, praying for guidance on what to feed my daughter. And this is where I hope to stay. How do I know when to move forward? Introduce a new food? Push through? Wait? Give it time? Change course? I DON'T. It is that simple. He has provided a plan full of knowledge and backed by medical evidence without me even asking that offers guidance, and rest to my exhausted brain. I don't always understand completely before I leap, but I do make sure I have spent time on my knees.
And what I most certainly know is that He designed Ellie. No knowledge will ever reveal the wonders of His world and what He has planned in its entirety. Only He knows every hair on our heads and exactly how He designed each and every one of us. And if FPIES teaches me nothing else, I hope I never forget the lesson of not knowing it all, not expecting to know it all, and getting on my knees. A hard HARD lesson for this mama.
This comment from supportive friends catches me every time. I usually run past it, but this time it stuck. I spent the next week reflecting, and realizing one thing that God always promises: in the toughest times we stretch the most, see Him the most, and He grows us the most. God has used FPIES to change ME.
Today I reflect. And the pain is still very real.
February, 2011.
Think...think...think...think. I have to think. I'm not sure what to do. I'm not sure what I am missing. Who am I kidding? The doctors don't know. The specialists don't know. She has stopped growing and is beginning to look pastey. She has never had trouble with that before. My head hurts from trying to think this through. I know what they are thinking, and why they expressed concern. They think she is entering her failure to thrive. I know it. I know that I see a sick little girl. This formula is supposed to be helping her but it is killing her. I know it. I can feel it. I hurt for her. I have to cry.
Think...think...think...think...Allergist: We have to get her off the formula. But just almond milk? Seriously? How am I to respond to a treatment plan that is prefaced with 'she has about a month before we need to be worried about the malnourishment'. That is just not ok! But the GI says there is no medical proof that she can react to the corn in the formula...but this time he is more silent. This time he is less sure and this time he has a different look in his eyes. He always had more to say than this time. Think...think...think...think...And the nutritionist. Give her a multi vitamin made from corn and just start feeding her? What kind of sudden plan is that? Our best hope is lamb? This makes no sense. She is so sick. She is crying again.
I pick her up. She is weak, losing weight. Dark circles under her eyes and she is vomiting again. She is starving. I am holding my baby -as-she-is-starving. This is the United States! This is not some third or fourth world country where I have no food to give her! What is the matter with these people? What sick baby can live on homemade almond milk alone!
I put her back to bed. What time is it? I have to do something. I can not just sit here and cry. Why can't someone just tell me? Help.....we need help!
On my knees beside my bed. Sobbing. I can't stop. Dear Jesus I need to feed my baby. Dear God help me. Help us. Please please help HER. What do I do? The pain.....to not feed her.....Jesus PLEASE..please, please.
All I could do was repeat it over and over again. Please, please, please, please.
What? I listen again. 'I have already given you hope.' Is that the answer?
I dry my face and head to the computer, and type out an obnoxious and desperate email full of medical jargon and doubt, begging a doctor half way around the globe for help - mother to mother - challenging her experience and expertise, and regurgitating medical studies about the inability to digest or tolerate proteins. Relying on this last glimmer of hope I was able to go to sleep.
In my morning I drug myself to the computer, and what did I see? An email! Already? Remarkable! How could that possibly be? This woman could not possibly have the time.
With her help I have fumbled my way into getting Elianna on to actual FOOD, and the introduction stage of Gut and Psychology Syndrome (GAPS). Her biggest hurdle with me has been to un-do many of the things I have 'learned' about protein intolerance, food allergy, and food sensitivity. And I could never have been more grateful. What she provided was hope. Right in the body of her email. Don't worry. You can heal her. She will be fine. Who has ever even dared to say those words to me before now?
I started this post by mentioning how FPIES has changed ME. More than nutrition, and medical jargon, and becomming a real foodie, I have learned a most important lesson. I was humbled and brought to my knees, praying for guidance on what to feed my daughter. And this is where I hope to stay. How do I know when to move forward? Introduce a new food? Push through? Wait? Give it time? Change course? I DON'T. It is that simple. He has provided a plan full of knowledge and backed by medical evidence without me even asking that offers guidance, and rest to my exhausted brain. I don't always understand completely before I leap, but I do make sure I have spent time on my knees.
And what I most certainly know is that He designed Ellie. No knowledge will ever reveal the wonders of His world and what He has planned in its entirety. Only He knows every hair on our heads and exactly how He designed each and every one of us. And if FPIES teaches me nothing else, I hope I never forget the lesson of not knowing it all, not expecting to know it all, and getting on my knees. A hard HARD lesson for this mama.
Sunday, May 22, 2011
Food Aversion
Ellie has a food aversion. She doesn't take the spoon, she refuses to let us feed her, and she often does not put things in her mouth or swallow them at all. We have spent days reflecting on this, and have had doctors recognize her delays as being connected to her protein intolerance. We have discussed how she has learned this behavior because of pain. But today I wonder if that is the case.
Every FPIES mom, at some point, must tell their child 'no, you can not eat that'. Today I found a post I wrote when Ellie was 13 months old. She wanted food. She fought me for food. And I told her no. For the sake of keeping her safe, I would not let her join in on what she saw us all doing - eat.
She was 13 months old. She was not at baseline, and she was most definitely in pain. She was bloated and had never known what it was like to not barf everything up that she put in her mouth. Yet she still begged. And reading this older post had made me wonder - perhaps it is more of a learned behavior, that we now have to un-do. I have spent months running around behind her, taking things out of her hands, out of her mouth, and not letting her have anything except for her bottle. Can I blame her that she is so attached? Can I be surprised that she wants nothing else, and that she is offended and visibly shook when I try to even change the nipple?
Another FPIES mom recently had her twins go from not eating, to swallowing and asking for more soup, within a matter of days. That to me is amazing. And that to me shows that this is something that is now up to Ellie. I have taught her to be protective of her own mouth, and have shown her the importance of being careful. Now I pray that she will move past that sense of security and become a part of our family table.
I searched for months on craigslist until I was able to find a specific high chair that would allow her to be at the table with us and look like us.
She is using it, and in the last week she asked twice to be fed water from a bowl while we ate dinner. Last night I tried to feed her broth the same way, and she was less receptive.
Perhaps she will soon make the connection of making that food fill up her belly. And perhaps she will understand that it does not have to come from her bottle. Until then, I suppose I have a toddler on a bottle. Oh, well!
Every FPIES mom, at some point, must tell their child 'no, you can not eat that'. Today I found a post I wrote when Ellie was 13 months old. She wanted food. She fought me for food. And I told her no. For the sake of keeping her safe, I would not let her join in on what she saw us all doing - eat.
She was 13 months old. She was not at baseline, and she was most definitely in pain. She was bloated and had never known what it was like to not barf everything up that she put in her mouth. Yet she still begged. And reading this older post had made me wonder - perhaps it is more of a learned behavior, that we now have to un-do. I have spent months running around behind her, taking things out of her hands, out of her mouth, and not letting her have anything except for her bottle. Can I blame her that she is so attached? Can I be surprised that she wants nothing else, and that she is offended and visibly shook when I try to even change the nipple?
Another FPIES mom recently had her twins go from not eating, to swallowing and asking for more soup, within a matter of days. That to me is amazing. And that to me shows that this is something that is now up to Ellie. I have taught her to be protective of her own mouth, and have shown her the importance of being careful. Now I pray that she will move past that sense of security and become a part of our family table.
I searched for months on craigslist until I was able to find a specific high chair that would allow her to be at the table with us and look like us.
She is using it, and in the last week she asked twice to be fed water from a bowl while we ate dinner. Last night I tried to feed her broth the same way, and she was less receptive.
Perhaps she will soon make the connection of making that food fill up her belly. And perhaps she will understand that it does not have to come from her bottle. Until then, I suppose I have a toddler on a bottle. Oh, well!
Wednesday, May 18, 2011
Duh, Mommy!
Ellie has been peeing like a crazy child for months now. I have continued to beg for ideas on how to get through four hours at night without having to change her bed, or keep her in cloth diapers without having a mess. ONE round of pee will fill ONE Huggies overnight diaper, and Pampers can not even hold that much. I just assumed it was because she is on a liquid diet. And then I read about how the body will produce more urine when it is healing and cleaning up the body. I just kept plugging forward and cringing at the thought of spending money on more diapering options. Her kidneys were clearly doing their job! Right?
We recently found an Osteopath Doctor who is also a GAPS doctor. She is two hours away, so we did the medical history portion of Ellie's appointment on the phone. She asked me how I made the bone broth, and two things came up. First, that I was not using a vinegar of any kind to extract extra minerals from the bones. Distilled vinegar is made from corn, and the other alternative is apple cider vinegar, but Ellie has failed apples. So I am on the hunt for a 'vinegar' we can use.
The second thing she asked was why I was not putting any sea salt in her broth. Why? I could not seem to put it into words. Well, it never came up in any of my email communications with Dr. Natasha to include it, and for some reason I thought it would not be a good idea. Why would she need that extra salt? We get more than enough salt and wouldn't it be bad to add too much?
Except I seemed to forget that she is getting NO salt. And as the doctor said 'Well if you give her salt she will probably pee less and be able to start retaining fluids easier, and regulate her electrolytes more...' I thought...'OH MAN! DUH!'
So that low sodium on her blood work? Yeah. That would be my fault.
We started with one teaspoon of sea salt in about 6 quarts of broth, and we noticed a difference right away. We now are putting in two teaspoons for the 6 quarts, and the night time troubles are already easing.
What can I say? Big time, oops. I bet the broth tastes better, too!
We recently found an Osteopath Doctor who is also a GAPS doctor. She is two hours away, so we did the medical history portion of Ellie's appointment on the phone. She asked me how I made the bone broth, and two things came up. First, that I was not using a vinegar of any kind to extract extra minerals from the bones. Distilled vinegar is made from corn, and the other alternative is apple cider vinegar, but Ellie has failed apples. So I am on the hunt for a 'vinegar' we can use.
The second thing she asked was why I was not putting any sea salt in her broth. Why? I could not seem to put it into words. Well, it never came up in any of my email communications with Dr. Natasha to include it, and for some reason I thought it would not be a good idea. Why would she need that extra salt? We get more than enough salt and wouldn't it be bad to add too much?
Except I seemed to forget that she is getting NO salt. And as the doctor said 'Well if you give her salt she will probably pee less and be able to start retaining fluids easier, and regulate her electrolytes more...' I thought...'OH MAN! DUH!'
So that low sodium on her blood work? Yeah. That would be my fault.
We started with one teaspoon of sea salt in about 6 quarts of broth, and we noticed a difference right away. We now are putting in two teaspoons for the 6 quarts, and the night time troubles are already easing.
What can I say? Big time, oops. I bet the broth tastes better, too!
Monday, May 16, 2011
Bloodwork
One positive thing came out of the $30 co-pay to the GI we won't be keeping, and that is the blood work. We have not had an entire round of blood work done on Ellie for several months, and now that we have completely started GAPS with her, I wanted to see what her vitamin levels looked like.
The comical part of this is that I asked for the blood tests almost immediately at the appointment, including some specific vitamins that the doctor said he doesn't worry about as a GI doctor. He said something about how GI doctors only worry about fat soluble vitamins or something goofy, to which I told him I wanted them all run. He agreed politely, which I appreciated.
The appointment progressed and once he discovered that we had taken her off of the amino acid based formula and put her on bone broth soup, he was very puzzled. He asked questions like 'where is she getting her protein from?' and 'how many calories would that be?' He did not seem to care where I got my information from, but he was not fully invested in our appointment from the beginning.
At one point he was looking rather concerned about the answers I was giving him, and told me that he needed to consult with the nutritionist. He left the room, and we waited some more. Now the nutritionist in this office is fantastic. He is not completely on board with what we are doing, and is not familiar with GAPS, but he is supportive in general. All of this to say, I was not concerned. The doc returned to say that it was not possible to fully track calories in broth, so he would like to offer a round of bloodwork to check Ellie's levels. HAHA! I almost laughed outloud. That would be GREAT, I told him.
After the appointment we headed off for the lab draw and waited a week or so for the results.
And how did they turn out, you are wondering? Wonderful! In fact, her vitamin A level was elevated, meaning she may be getting too much. And all of her levels were as good as they were on the elemental diet, and some even better.
This was SO exciting for me! Even though there are decades of experience and research that have gone into GAPS and SCD, it is not been readily accepted by mainstream MD's. I could not help but doubt that her bloodwork would come back complete. But it did! Really? ALL nutrients provided on bone broth, meat, and zucchini? Amazing! That was more proof than I could have ever asked for.
On the flip side, I sort of wanted to go take the paper proof and rub it in the doctors face. I had to ask forgiveness for that.
The comical part of this is that I asked for the blood tests almost immediately at the appointment, including some specific vitamins that the doctor said he doesn't worry about as a GI doctor. He said something about how GI doctors only worry about fat soluble vitamins or something goofy, to which I told him I wanted them all run. He agreed politely, which I appreciated.
The appointment progressed and once he discovered that we had taken her off of the amino acid based formula and put her on bone broth soup, he was very puzzled. He asked questions like 'where is she getting her protein from?' and 'how many calories would that be?' He did not seem to care where I got my information from, but he was not fully invested in our appointment from the beginning.
At one point he was looking rather concerned about the answers I was giving him, and told me that he needed to consult with the nutritionist. He left the room, and we waited some more. Now the nutritionist in this office is fantastic. He is not completely on board with what we are doing, and is not familiar with GAPS, but he is supportive in general. All of this to say, I was not concerned. The doc returned to say that it was not possible to fully track calories in broth, so he would like to offer a round of bloodwork to check Ellie's levels. HAHA! I almost laughed outloud. That would be GREAT, I told him.
After the appointment we headed off for the lab draw and waited a week or so for the results.
And how did they turn out, you are wondering? Wonderful! In fact, her vitamin A level was elevated, meaning she may be getting too much. And all of her levels were as good as they were on the elemental diet, and some even better.
This was SO exciting for me! Even though there are decades of experience and research that have gone into GAPS and SCD, it is not been readily accepted by mainstream MD's. I could not help but doubt that her bloodwork would come back complete. But it did! Really? ALL nutrients provided on bone broth, meat, and zucchini? Amazing! That was more proof than I could have ever asked for.
On the flip side, I sort of wanted to go take the paper proof and rub it in the doctors face. I had to ask forgiveness for that.
Thursday, May 5, 2011
It Finally Happened
My worst fear. Well, at least one of them. I packed up our bags and headed out yesterday afternoon to a meeting. It was a half hour drive to get there, and about 45 minutes into the meeting Elianna starting signing her flappy finger gesture for a bottle.
That was when it happened. I realized I had forgotten one. No bottle. No bottle in the diaper bag or in the car. No way to feed her. Panic.
Borrow an alternative? No way. Not for Elianna. Are you kidding? She won't even let us feed her with a spoon. I tried changing the spout on her bottle this week one time at bedtime when she was half asleep. I changed it from an Avent bottle nipple to a silicone NUK bottle top that had more of a spout shape, and she screamed and tried to unscrew the top of the bottle. She can't swallow successfully from a cup, and she refuses to drink her 'soup' from a straw. In my panic I tried to feed her from a small regular cup which almost resulted in a huge mess. She tried to throw it and the screaming began.
Luckily the meeting was also a with a personal friend so it was a meeting-slash-playdate. I have to GO! We jumped in the car and headed to the nearby Safeway. Sounds fine except that Ellie goes from 0 to 900 in about 2 seconds. She has ALWAYS been that way. Personality? Maybe. But I am certain that broth goes right through her and she has never been too fond of feeling hungry. She always lets us know quite loudly.
I drug both kids into the store at a dead run because we had limited time to get there and to piano lessons. Moriah was screaming "I cant run that fast mommy!" and Ellie was just plain screaming. Lovely. Another opportunity to be 'that mom' in the grocery store.
Bottle purchased we loaded back up and I filled it for Ellie. In an unwashed, cross contaminated bottle. And all I kept thinking was 'major mommy fail'.
It doesn't matter that she is no longer on the restricted elemental formula. She is still sensitive. Extremely sensitive. All I could think about was the cardboard dust and adhesive dust (corn) that she was ingesting on this unwashed bottle.
I had times in the past that I thought I did not have a bottle packed or ran out of broth too soon, but I always found something stuck in the diaper bag or was not far from home. This time there was nothing. No spare packed in the trunk. Nothing. And it was an incredibly horrible feeling. When she was on formula I carried a box in the trunk with extra water, formula and water. I guess since I can not pre-pack her soup I took out that box and never restocked it. Clearly it is time to!
That was when it happened. I realized I had forgotten one. No bottle. No bottle in the diaper bag or in the car. No way to feed her. Panic.
Borrow an alternative? No way. Not for Elianna. Are you kidding? She won't even let us feed her with a spoon. I tried changing the spout on her bottle this week one time at bedtime when she was half asleep. I changed it from an Avent bottle nipple to a silicone NUK bottle top that had more of a spout shape, and she screamed and tried to unscrew the top of the bottle. She can't swallow successfully from a cup, and she refuses to drink her 'soup' from a straw. In my panic I tried to feed her from a small regular cup which almost resulted in a huge mess. She tried to throw it and the screaming began.
Luckily the meeting was also a with a personal friend so it was a meeting-slash-playdate. I have to GO! We jumped in the car and headed to the nearby Safeway. Sounds fine except that Ellie goes from 0 to 900 in about 2 seconds. She has ALWAYS been that way. Personality? Maybe. But I am certain that broth goes right through her and she has never been too fond of feeling hungry. She always lets us know quite loudly.
I drug both kids into the store at a dead run because we had limited time to get there and to piano lessons. Moriah was screaming "I cant run that fast mommy!" and Ellie was just plain screaming. Lovely. Another opportunity to be 'that mom' in the grocery store.
Bottle purchased we loaded back up and I filled it for Ellie. In an unwashed, cross contaminated bottle. And all I kept thinking was 'major mommy fail'.
It doesn't matter that she is no longer on the restricted elemental formula. She is still sensitive. Extremely sensitive. All I could think about was the cardboard dust and adhesive dust (corn) that she was ingesting on this unwashed bottle.
I had times in the past that I thought I did not have a bottle packed or ran out of broth too soon, but I always found something stuck in the diaper bag or was not far from home. This time there was nothing. No spare packed in the trunk. Nothing. And it was an incredibly horrible feeling. When she was on formula I carried a box in the trunk with extra water, formula and water. I guess since I can not pre-pack her soup I took out that box and never restocked it. Clearly it is time to!
Saturday, April 30, 2011
Her First Antibiotics
We were making fantastic progress with Ellie on the bone broths and meats. Thanks to the many blessings of others we have been able to provide her with just about every bone broth imaginable. Each animal has a different diet and provides different nutrients. We often think of this when eating the staples fish, beef, or chicken. We don't often think of the other meats as offering even more.
Once she had been on the bone broth and boiled, pureed meats for a couple of weeks we began the process of introducing vegetables. We used the GAPS introduction diet as our guide. We started with de-seeded, skinned, boiled green zucchini. Removing the seeds and skin helped take out any fibrous parts that would irritate and inflame her healing intestines.
We then moved on to onion. She didn't seem to do great, but we moved forward. I added in carrot, and threw in a little garlic. I could have added them in too quickly. The onion could have been too fibrous. The carrot could have been too sweet. The garlic too starchy. Or perhaps I just got to excited at the idea of her eating food. Whatever it was, we had our first 'fail' since the start of broths. And it seemed to hinge largely around the carrot.
At this point I realized things were different. It as not a typical, confusing, and extreme FPIES reaction like we had seen in the past. And I began to understand that what I was seeing was an intolerance - the inability for her body to handle a particular food. And the differences between FPIES, intolerances, and allergies began to make sense.
I removed the garlic and carrot, but she did not heal. I removed the onion and still no improvement. With just zucchini we began to see respiratory symptoms. Back on just the broth and meat. And a low grade fever.
Off to the pediatrician we went. Diagnosis: sinus infection and ear infection from reflux. Treatment: Her first ever round of antibiotics. 10 days of compounded amoxicillian (sp?). A slight increase in her probiotic. And a surprise. No typical antibiotic diarrhea. Or constipation. Or problems. Instead we saw a white tongue, return of full body eczema, and an otherwise very happy toddler.
Interesting. Antibiotic therapy is used to treat colitis and intestinal disorders....sometimes.
The white tongue and eczema was fungus overgrowth. Compounded powder nystatin was added to her mix.
And she got better. Zucchini back in, and moving forward again.
Once she had been on the bone broth and boiled, pureed meats for a couple of weeks we began the process of introducing vegetables. We used the GAPS introduction diet as our guide. We started with de-seeded, skinned, boiled green zucchini. Removing the seeds and skin helped take out any fibrous parts that would irritate and inflame her healing intestines.
We then moved on to onion. She didn't seem to do great, but we moved forward. I added in carrot, and threw in a little garlic. I could have added them in too quickly. The onion could have been too fibrous. The carrot could have been too sweet. The garlic too starchy. Or perhaps I just got to excited at the idea of her eating food. Whatever it was, we had our first 'fail' since the start of broths. And it seemed to hinge largely around the carrot.
At this point I realized things were different. It as not a typical, confusing, and extreme FPIES reaction like we had seen in the past. And I began to understand that what I was seeing was an intolerance - the inability for her body to handle a particular food. And the differences between FPIES, intolerances, and allergies began to make sense.
I removed the garlic and carrot, but she did not heal. I removed the onion and still no improvement. With just zucchini we began to see respiratory symptoms. Back on just the broth and meat. And a low grade fever.
Off to the pediatrician we went. Diagnosis: sinus infection and ear infection from reflux. Treatment: Her first ever round of antibiotics. 10 days of compounded amoxicillian (sp?). A slight increase in her probiotic. And a surprise. No typical antibiotic diarrhea. Or constipation. Or problems. Instead we saw a white tongue, return of full body eczema, and an otherwise very happy toddler.
Interesting. Antibiotic therapy is used to treat colitis and intestinal disorders....sometimes.
The white tongue and eczema was fungus overgrowth. Compounded powder nystatin was added to her mix.
And she got better. Zucchini back in, and moving forward again.
Wednesday, April 27, 2011
And How Do We Get Them Back?
This has been the research question of the month for me. Those confusing digestive enzymes have pushed me into rethinking my career and considering courses this summer in something that might help. The short answer: heal the intestines from the inside out.
Using SCD and GAPS books, along with information provided from our relocated GI, medical studies, and other knowledgeable mamas, I have been able to piece together a basic understanding of the GI tract in relationship to these enzymes. Here is my (guaranteed over-simplified) version:
When the intestines receive damage of any kind (antibiotics, illness, inherited 'toxic load', etc.) then the bacterial make-up present there can become imbalanced. Things grow more than they are supposed to and others die off. These important digestive enzymes reside on the tips of the intestinal villi. There they can be damaged from this bacterial overgrowth and the body may then begin to cover them with a protective mucous.
Another way they can be damaged is through lack of nutrition. During bacterial overgrowth, these symbiotic intestinal bugs begin to grow places they are not supposed to, like into the stomach and throat. Sound funky? Every mama knows about thrush in the mouth. There is one perfect example! Ph levels in the stomach change, change when invading bacteria take up residence, and if it does not do it's job, food can enter the intestines unprepared for further digestion. Things begin to go wrong. Hormones are not released as needed, other organs are not sent signals to make enzymes, and the entire digestive system becomes impaired. Much needed nutrition is not absorbed by the body, and these little intestinal villi take incredible amounts of nourishment just to do their job. Without it they begin laying flat and the body begins to cover them in a protective mucous.
Regardless of which comes first, (damage or malnourishment), eventually our little intestinal villi friends become exhausted, and somewhere along here is where the cycle of leaky gut and colitis begins. 'Holes' in the intestines develop. It is believed that proteins from food that are not meant to enter the body's bloodstream begin to make their way through the damaged intestinal wall, triggering allergies, intolerances and sensitivities.
Note (disclaimer?): yes, there are believed to be situations where this can happen due to genetic components, but those situations are rare and testing is extremely limited. There is not enough research or information at this point to identify these genes, and even if there was, it would not change the need for my daughter to eat.
So, that brings us back to the issue of how does she get them back? Healing. The bacteria that has overgrown must be starved and the bacteria that is missing must be replaced. And those little villi must be regrown using nutrition from the inside out. Gentle, healing nutrition that needs minimal or no digestion. What does that you say? What provides incredible amounts of easily absorbed nutrients, is rich in vitamins and minerals, provides the brain with it's much needed fats, and since the dawn of time has been used to nourish the intestines from the inside out?
BONE BROTH :)
Combining this with a lot of patient time for healing, we hope she will repair and begin to remake some or all of these enzymes - from the inside out.
Using SCD and GAPS books, along with information provided from our relocated GI, medical studies, and other knowledgeable mamas, I have been able to piece together a basic understanding of the GI tract in relationship to these enzymes. Here is my (guaranteed over-simplified) version:
When the intestines receive damage of any kind (antibiotics, illness, inherited 'toxic load', etc.) then the bacterial make-up present there can become imbalanced. Things grow more than they are supposed to and others die off. These important digestive enzymes reside on the tips of the intestinal villi. There they can be damaged from this bacterial overgrowth and the body may then begin to cover them with a protective mucous.
Another way they can be damaged is through lack of nutrition. During bacterial overgrowth, these symbiotic intestinal bugs begin to grow places they are not supposed to, like into the stomach and throat. Sound funky? Every mama knows about thrush in the mouth. There is one perfect example! Ph levels in the stomach change, change when invading bacteria take up residence, and if it does not do it's job, food can enter the intestines unprepared for further digestion. Things begin to go wrong. Hormones are not released as needed, other organs are not sent signals to make enzymes, and the entire digestive system becomes impaired. Much needed nutrition is not absorbed by the body, and these little intestinal villi take incredible amounts of nourishment just to do their job. Without it they begin laying flat and the body begins to cover them in a protective mucous.
Regardless of which comes first, (damage or malnourishment), eventually our little intestinal villi friends become exhausted, and somewhere along here is where the cycle of leaky gut and colitis begins. 'Holes' in the intestines develop. It is believed that proteins from food that are not meant to enter the body's bloodstream begin to make their way through the damaged intestinal wall, triggering allergies, intolerances and sensitivities.
Note (disclaimer?): yes, there are believed to be situations where this can happen due to genetic components, but those situations are rare and testing is extremely limited. There is not enough research or information at this point to identify these genes, and even if there was, it would not change the need for my daughter to eat.
So, that brings us back to the issue of how does she get them back? Healing. The bacteria that has overgrown must be starved and the bacteria that is missing must be replaced. And those little villi must be regrown using nutrition from the inside out. Gentle, healing nutrition that needs minimal or no digestion. What does that you say? What provides incredible amounts of easily absorbed nutrients, is rich in vitamins and minerals, provides the brain with it's much needed fats, and since the dawn of time has been used to nourish the intestines from the inside out?
BONE BROTH :)
Combining this with a lot of patient time for healing, we hope she will repair and begin to remake some or all of these enzymes - from the inside out.
Thursday, April 14, 2011
Broth, Broth, Baby, To Go...To Go....
This topic keeps coming up. Many have quickly recognized the work that Ellie's diet change is taking when it comes to mealtime, or when it comes to preparing her special diet. But most do not seem to understand the implications of trying to actually get out of the house. Here is my attempt to illustrate and compare:
When breastfed, babies are so easy to pack for. Mama? check. Diapers? check. Good to go. All fitting neatly in a normal - to - small size bag. Risk level: forgetting diapers means a stop at the grocery store.
When using commercial formula things are a bit more complicated, and at one point I had the nerve to complain about it. Bottles? check. Formula? check. Heated water? check. Diapers? check? Bag must be a bit larger, and may need to include a thermos for water. Risk level: forgetting any items requires a stop at the grocery store, or finding a restaurant that can provide hot water or ice.
When using prescription formula the diaper bag must get even larger, and is more inconvenient. Bottles? check. Entire can of formula? check. Heated water? check. Ice to cool down heated water if needed? check. Extra clothes for the child prone to vomit or blow out? check. Extra clothes for mama? check. Diapers? check. And in Ellie's case: Homemade wipes? check. Cloth diapers? check. As you can see the bag required is much larger to accommodate the specific needs of a special child. Risk level: substantial. Not enough formula packed means no food. The fear of getting stranded somewhere too far from home without anything to feed my child spurred me to keep a plastic tub in the back of my car with extra formula, bottles, diapers, clothes, bottled water, and whatever else we were restricted to at the time. That covered everything except for the issue of hot water, because Ellie refused to drink her bottle unless it was warmed properly, regardless of how hungry she got or how loud she yelled.
When on a special diet, or in our case, a diet of bone and meat broth, meat puree, and a vegetable, getting out the door becomes much more complicated. We start by packing the 'regular' stuff: diapers, wipes, extra outfit, throw in an empty bottle or two. Then we have to stop and evaluate. How long will be gone? What will we have access to? How far are we traveling away from home? How long will we be in the car? We have two thermoses we can use, that can sustain us for about 3 hours outside of the house. Longer than that we must pack an ice chest. And try to figure out how we would heat more broth. After considering this we begin warming the appropriate amount of broth, pureed meat and vegetable on the stove top. If we are going to be longer than a quick run to the library we have to make it hot enough to last, which is too hot to drink. We warm it and fill the thermoses, and then fill an additional small thermos full of ice to cool down the broth if she needs to eat before it has cooled enough. (This always makes me a bit nervous because it waters down the nutritional content and calories in her bottle, and is another reason we can not stay out too long)
The bag required at this point is rather large. In fact, our bag usually wont fit in the basket of our McClaren umbrella stroller. I am currently shopping for a large backpack that would be similar to one used hiking. And the risk level? Tremendous. I have already made the mistake of not packing enough broth for her on two separate occasions. She just ate more those mornings than she normally does, and the result was a hungry baby who had nothing to eat until we were able to get home.
The three hour mark is a crucial one. When we are out and she is refusing to eat, that is about how long we can stretch her before having full meltdown. At home she eats one 9 ounce bottle every 1.5 - 2 hours, on average. But due to her sensory issues, she sometimes shuts down when we are out and about and refuses to eat. It may be too much stimulus, she may be too busy, or the moon may just be in a funky position. Who knows. Sometimes we can confine her to a stroller and block out surrounding stimulus, or put her in the carseat, and she will be agreeable and eat, allowing us to stay out longer.
Overall, part of our new normal requires us to be at home much more than before. Not because we have become anti-social hermits, but because it can be damaging to Elianna. Or because I have to make broth. And sometimes because I am too pickin tired to deal with the checklist. So for those of you who have gone out of your way to visit us, sometimes driving quite a distance, thank you. Thank you for allowing my two girls some play time, and for allowing this mommy to enjoy company where I know I have everything I need for Ellie. And for those times I am able to get out of my house, thank you for understanding our limitations, and allowing me to use your stove top (but I will bring my own pot)!
When breastfed, babies are so easy to pack for. Mama? check. Diapers? check. Good to go. All fitting neatly in a normal - to - small size bag. Risk level: forgetting diapers means a stop at the grocery store.
When using commercial formula things are a bit more complicated, and at one point I had the nerve to complain about it. Bottles? check. Formula? check. Heated water? check. Diapers? check? Bag must be a bit larger, and may need to include a thermos for water. Risk level: forgetting any items requires a stop at the grocery store, or finding a restaurant that can provide hot water or ice.
When using prescription formula the diaper bag must get even larger, and is more inconvenient. Bottles? check. Entire can of formula? check. Heated water? check. Ice to cool down heated water if needed? check. Extra clothes for the child prone to vomit or blow out? check. Extra clothes for mama? check. Diapers? check. And in Ellie's case: Homemade wipes? check. Cloth diapers? check. As you can see the bag required is much larger to accommodate the specific needs of a special child. Risk level: substantial. Not enough formula packed means no food. The fear of getting stranded somewhere too far from home without anything to feed my child spurred me to keep a plastic tub in the back of my car with extra formula, bottles, diapers, clothes, bottled water, and whatever else we were restricted to at the time. That covered everything except for the issue of hot water, because Ellie refused to drink her bottle unless it was warmed properly, regardless of how hungry she got or how loud she yelled.
When on a special diet, or in our case, a diet of bone and meat broth, meat puree, and a vegetable, getting out the door becomes much more complicated. We start by packing the 'regular' stuff: diapers, wipes, extra outfit, throw in an empty bottle or two. Then we have to stop and evaluate. How long will be gone? What will we have access to? How far are we traveling away from home? How long will we be in the car? We have two thermoses we can use, that can sustain us for about 3 hours outside of the house. Longer than that we must pack an ice chest. And try to figure out how we would heat more broth. After considering this we begin warming the appropriate amount of broth, pureed meat and vegetable on the stove top. If we are going to be longer than a quick run to the library we have to make it hot enough to last, which is too hot to drink. We warm it and fill the thermoses, and then fill an additional small thermos full of ice to cool down the broth if she needs to eat before it has cooled enough. (This always makes me a bit nervous because it waters down the nutritional content and calories in her bottle, and is another reason we can not stay out too long)
The bag required at this point is rather large. In fact, our bag usually wont fit in the basket of our McClaren umbrella stroller. I am currently shopping for a large backpack that would be similar to one used hiking. And the risk level? Tremendous. I have already made the mistake of not packing enough broth for her on two separate occasions. She just ate more those mornings than she normally does, and the result was a hungry baby who had nothing to eat until we were able to get home.
The three hour mark is a crucial one. When we are out and she is refusing to eat, that is about how long we can stretch her before having full meltdown. At home she eats one 9 ounce bottle every 1.5 - 2 hours, on average. But due to her sensory issues, she sometimes shuts down when we are out and about and refuses to eat. It may be too much stimulus, she may be too busy, or the moon may just be in a funky position. Who knows. Sometimes we can confine her to a stroller and block out surrounding stimulus, or put her in the carseat, and she will be agreeable and eat, allowing us to stay out longer.
Overall, part of our new normal requires us to be at home much more than before. Not because we have become anti-social hermits, but because it can be damaging to Elianna. Or because I have to make broth. And sometimes because I am too pickin tired to deal with the checklist. So for those of you who have gone out of your way to visit us, sometimes driving quite a distance, thank you. Thank you for allowing my two girls some play time, and for allowing this mommy to enjoy company where I know I have everything I need for Ellie. And for those times I am able to get out of my house, thank you for understanding our limitations, and allowing me to use your stove top (but I will bring my own pot)!
Saturday, March 26, 2011
First Fail After the Broth
I am calling it quits on carrots. I had a funny feeling from the beginning, but pushed through because I truly wanted these to be a pass for Ellie. But no luck. Constipation can also be a sign of 'allergic' reaction, and after starting carrots the first time Ellie stopped her now regular stool. So I stopped, and then restarted, and this second time it took three days before we were seeing symptoms: ear drainage, raspy nose/chest, eczema flare, urping (wet burps), very fussy nights, and no stool.
The good news is it was a less severe reaction and took much longer to be sure. I believe this to be a sign of FPIES healing. Hooray! The bad news is now that she is on the road to healing, I think this might be one of those foods she may never be able to have. But we will shelve it for now, and come back to it in about 32 months.
The only remaining factor is that we still have not received the test results for sugar intolerance from her biopsy. This test is taking so long! Carrots are extremely high in sugar content, so we will see if those test results shed some light on this fail.
I am hopeful that she will recover quickly, and curious how long it will actually take to do so. Back to zucchini and onions, which is already great progress from where we were a short time ago!
The good news is it was a less severe reaction and took much longer to be sure. I believe this to be a sign of FPIES healing. Hooray! The bad news is now that she is on the road to healing, I think this might be one of those foods she may never be able to have. But we will shelve it for now, and come back to it in about 32 months.
The only remaining factor is that we still have not received the test results for sugar intolerance from her biopsy. This test is taking so long! Carrots are extremely high in sugar content, so we will see if those test results shed some light on this fail.
I am hopeful that she will recover quickly, and curious how long it will actually take to do so. Back to zucchini and onions, which is already great progress from where we were a short time ago!
Sunday, March 20, 2011
Ellie's Current Progress and Plan
We are about 5 weeks into the GAPS protocol for Ellie. Let me back track and explain what we have been doing in summary (watch out for poop talk!)....
Taking my first email from Dr. Natasha I began a new food plan for Ellie. I began the research for grass fed, organic meats that were also soy and corn free. I have done reading on allergy boards where others say that they can react to major triggers when eating meat of animals that have been fed them. I also know another FPIES mom whose son reacted to the corn in eggs. I was able to find lamb, beef and pork to start out with.
We started slowly, adding one teaspoon at at time to her bottles. We did not push her, and a couple of times we had to adjust the bottles in order for her to take them. It took a couple of weeks to get her off the formula entirely, and the last few days she really held on, wanting that scoop.
When she got down to one scoop of formula in each 8-9 ounce bottle, I began using the Vitamix to liquefy the boiled meat. I added 2-3 ounces of meat to her bottles. She ate around the clock, every 1 hour to 1.5 hour, 24 hours a day. This coupled with the need to warm her meat smoothies on the stove top has been rather restricting, and exhausting.
To date she has had these meats and broths: beef, lamb, pork, duck, venison, buffalo, and chicken. She liked the lamb and pork, but gagged on the beef. It seemed to be a sensory issue since the beef had a much higher fat content. And she truly seemed as if she just did not like the duck. Imagine that. I marveled. She was showing preference with food, and she could afford to have an opinion on the matter. A milestone!
During this time we unsuccessfully trialled a probiotic and have not had her on one still. I also did my best to add a teaspoon or so of boiled beef liver to each bottle to add vitamins and nutrients. Including bone marrow, skin, and liver in each bottle was a must for healing according to Dr. Natasha. What she failed to mention was the GAS that liver can cause! whew!
It took about 3 weeks for her stool to begin looking more normal (another milestone), though very dark and tar like. This was my cue to move forward. I purchased organic zucchini, and following direction from Dr. Natasha, I peeled it, de-seeded it, and boiled it to death. I then put it in the Vitamix with broth and liquefied it.
After being so successful with the bone broths and boiled meats, I have no idea why I was so nervous when beginning vegetables, but I was. It was food trail panic all over again. We had no safe vegetables at this point. Scary stuff!
I started with one teaspoon of zucchini in her bottles, gradually increasing it to 2 ounces, over the period of about 3 days. And she loved it! For the first time in her life she began to have regular looking stools, and they increased in frequency. After three days we added white and yellow onion, boiling it down and pureeing it with the zucchini. She really seemed to like this addition. I think it added a sweetness to the meats. We did this for two days and she began pooping every day! It was poop-party time in the Sawatzky household!
(I have not compiled all of my notes so I hope I am getting the time frame correct...)
Day 7 I added peeled and boiled carrots to her mixture. She got a little more gassy and seemed to have something a little bit off, but nothing to be concerned about. We waited for the poop and it looked orange and I got a bad feeling, but nothing tremendously noticeable.
Day 8 I added leeks. Boiled and pureed. And there was some funny poop. It was soft and pliable but looked like deer poop (pebbly). I panicked. Is this constipation forming? I headed to the Bristol Stool Chart and it was actually leaning towards looser stool, which worried me even more. A reaction??
Day 9 I threw in some garlic. And later that day she showed tummy trouble. And had the same concerning deer-like poop. We were moving too fast. I knew it.
I whipped back out my emails with Dr. Natasha...and yup. Move slowly with the vegetables. Why? The fiber in the vegetables may not be well tolerated and her intestines need time to adjust. The bone broth and pureed meats are the easiest thing possible for human intestines to digest...needing virtually no digesting at all. Adding vegetables was shaking things up a bit, and in fact, I made note that we saw more 'die off' type symptoms.
Day 10 We started over. Zucchini only. Waited for the poop. Back to the mushy blob.
Day 11 Zucchini and onion. Looked good.
Day 12 Zucchini and onion. Looked good. And considerable less stink. I took a second look at the Bristol Stool Chart. Oh ....wait. The type of stool she was having is considered OK? Oops. Hmm. Well, better safe than sorry!
Yesterday: We added back in carrot. Only carrot. No zucchini or onion. I want to see what happens with just carrot.
Today is day two...and so far no poo. (hey that rhymes!) Here we hold. She has been gassier and fussier, and I can't help but wonder if the sugar content of the carrots or the beta carotene is of concern. I also remembered that way back 'in the day' I prick tested IgE positive for carrot allergy. Interesting. And another thing...I am about 99% sure that we never trialled carrots prior to diagnoses, but my record keeping was spotty at best in the beginning.
Another interesting thing to note is that with the introduction of vegetables she began sleeping longer increments at night. Hallelujah. Waking up to feed her more often than a newborn for four weeks was making it difficult to function during the day, and I am still working my 'real' job at 75%. Ugh. I needed sleep so these new four hour chunks at night have been heavenly. Except for her new problem of peeing all over.
And today we wait for the carrot poo. This is where the GAPS individualization comes in to play. Certain vegetables are better than others....certain vegetables are easier to digest than others....certain vegetables should be avoided by anyone....and certain vegetables will need to be avoided by Ellie. Her immune system, her environment, her inherited toxic load, her intestines, her history of food trials, her foods she had already eaten and failed. All part of the puzzle and part of the protein intolerance game. But it feels so much easier to handle with the progress she has made!
Taking my first email from Dr. Natasha I began a new food plan for Ellie. I began the research for grass fed, organic meats that were also soy and corn free. I have done reading on allergy boards where others say that they can react to major triggers when eating meat of animals that have been fed them. I also know another FPIES mom whose son reacted to the corn in eggs. I was able to find lamb, beef and pork to start out with.
We started slowly, adding one teaspoon at at time to her bottles. We did not push her, and a couple of times we had to adjust the bottles in order for her to take them. It took a couple of weeks to get her off the formula entirely, and the last few days she really held on, wanting that scoop.
When she got down to one scoop of formula in each 8-9 ounce bottle, I began using the Vitamix to liquefy the boiled meat. I added 2-3 ounces of meat to her bottles. She ate around the clock, every 1 hour to 1.5 hour, 24 hours a day. This coupled with the need to warm her meat smoothies on the stove top has been rather restricting, and exhausting.
To date she has had these meats and broths: beef, lamb, pork, duck, venison, buffalo, and chicken. She liked the lamb and pork, but gagged on the beef. It seemed to be a sensory issue since the beef had a much higher fat content. And she truly seemed as if she just did not like the duck. Imagine that. I marveled. She was showing preference with food, and she could afford to have an opinion on the matter. A milestone!
During this time we unsuccessfully trialled a probiotic and have not had her on one still. I also did my best to add a teaspoon or so of boiled beef liver to each bottle to add vitamins and nutrients. Including bone marrow, skin, and liver in each bottle was a must for healing according to Dr. Natasha. What she failed to mention was the GAS that liver can cause! whew!
It took about 3 weeks for her stool to begin looking more normal (another milestone), though very dark and tar like. This was my cue to move forward. I purchased organic zucchini, and following direction from Dr. Natasha, I peeled it, de-seeded it, and boiled it to death. I then put it in the Vitamix with broth and liquefied it.
After being so successful with the bone broths and boiled meats, I have no idea why I was so nervous when beginning vegetables, but I was. It was food trail panic all over again. We had no safe vegetables at this point. Scary stuff!
I started with one teaspoon of zucchini in her bottles, gradually increasing it to 2 ounces, over the period of about 3 days. And she loved it! For the first time in her life she began to have regular looking stools, and they increased in frequency. After three days we added white and yellow onion, boiling it down and pureeing it with the zucchini. She really seemed to like this addition. I think it added a sweetness to the meats. We did this for two days and she began pooping every day! It was poop-party time in the Sawatzky household!
(I have not compiled all of my notes so I hope I am getting the time frame correct...)
Day 7 I added peeled and boiled carrots to her mixture. She got a little more gassy and seemed to have something a little bit off, but nothing to be concerned about. We waited for the poop and it looked orange and I got a bad feeling, but nothing tremendously noticeable.
Day 8 I added leeks. Boiled and pureed. And there was some funny poop. It was soft and pliable but looked like deer poop (pebbly). I panicked. Is this constipation forming? I headed to the Bristol Stool Chart and it was actually leaning towards looser stool, which worried me even more. A reaction??
Day 9 I threw in some garlic. And later that day she showed tummy trouble. And had the same concerning deer-like poop. We were moving too fast. I knew it.
I whipped back out my emails with Dr. Natasha...and yup. Move slowly with the vegetables. Why? The fiber in the vegetables may not be well tolerated and her intestines need time to adjust. The bone broth and pureed meats are the easiest thing possible for human intestines to digest...needing virtually no digesting at all. Adding vegetables was shaking things up a bit, and in fact, I made note that we saw more 'die off' type symptoms.
Day 10 We started over. Zucchini only. Waited for the poop. Back to the mushy blob.
Day 11 Zucchini and onion. Looked good.
Day 12 Zucchini and onion. Looked good. And considerable less stink. I took a second look at the Bristol Stool Chart. Oh ....wait. The type of stool she was having is considered OK? Oops. Hmm. Well, better safe than sorry!
Yesterday: We added back in carrot. Only carrot. No zucchini or onion. I want to see what happens with just carrot.
Today is day two...and so far no poo. (hey that rhymes!) Here we hold. She has been gassier and fussier, and I can't help but wonder if the sugar content of the carrots or the beta carotene is of concern. I also remembered that way back 'in the day' I prick tested IgE positive for carrot allergy. Interesting. And another thing...I am about 99% sure that we never trialled carrots prior to diagnoses, but my record keeping was spotty at best in the beginning.
Another interesting thing to note is that with the introduction of vegetables she began sleeping longer increments at night. Hallelujah. Waking up to feed her more often than a newborn for four weeks was making it difficult to function during the day, and I am still working my 'real' job at 75%. Ugh. I needed sleep so these new four hour chunks at night have been heavenly. Except for her new problem of peeing all over.
And today we wait for the carrot poo. This is where the GAPS individualization comes in to play. Certain vegetables are better than others....certain vegetables are easier to digest than others....certain vegetables should be avoided by anyone....and certain vegetables will need to be avoided by Ellie. Her immune system, her environment, her inherited toxic load, her intestines, her history of food trials, her foods she had already eaten and failed. All part of the puzzle and part of the protein intolerance game. But it feels so much easier to handle with the progress she has made!
Thursday, March 17, 2011
Holding My Breath
Today Ellie slept a lot. Yesterday we started carrots. And once again I found myself holding my breath. Is she growing? Is she sleeping better? Is she reacting? Two weeks of great progress and no symptoms. Yet it all comes rushing back like a bad dream. It brings me to a place where I wonder....regardless of the progress we make, or how old she gets, will I ever breathe normally? Or will I forever be at risk for that sudden streak of panic? Those moments where all of the possibilities run their marathon through my head while I remain breathless?
She has made incredible progress over the last few weeks. And then...
Last night she had a routine night time bottle, and coughed. I sat her up for a minute and it stopped.
Tonight she had a routine night time bottle, and then coughed. We got her up for a few minutes and it stopped.
And again it had me holding my breath. Was it something? Probably not. Again I march to the fridge where I keep her spreadsheet and log: coughing.
Holding my breath. Watching for symptoms, signs, problems. Stealing my joy, and robbing me of the blessings we have seen. It pushes me back to my knees. It reminds me that it is not I who makes the world spin, and it is not I that am in control. And forces me to take a deep, slow, deliberate breath.
She has made incredible progress over the last few weeks. And then...
Last night she had a routine night time bottle, and coughed. I sat her up for a minute and it stopped.
Tonight she had a routine night time bottle, and then coughed. We got her up for a few minutes and it stopped.
And again it had me holding my breath. Was it something? Probably not. Again I march to the fridge where I keep her spreadsheet and log: coughing.
Holding my breath. Watching for symptoms, signs, problems. Stealing my joy, and robbing me of the blessings we have seen. It pushes me back to my knees. It reminds me that it is not I who makes the world spin, and it is not I that am in control. And forces me to take a deep, slow, deliberate breath.
A Pause For More Miracles
While attempting to locate lamb bones, I contacted the company that supplies grass fed organic lamb to the local Whole Foods, Trader Joes, and Natural Foods Co-op. The customer service I received was incredible and personalized. They asked me a few questions about what I was looking for, and then said they would arrange for bones to be delivered to the local Whole Foods for me to pick up. I thanked them for their time and briefly stated that it was for my daughter who only ate meat. The response? We are glad to help and the bones are donated. We have let them know you will be picking up the entire case.
Amazing. The word of the year.
I have received permission to tell you who they are:
Atkins Ranch
Not only do they have fantastic customer service, they also have a fantastic product. Take a look at their website for more information.
Thanks again to Atkins Ranch!
What an amazing gesture of kindness for our Ellie!
Amazing. The word of the year.
I have received permission to tell you who they are:
Atkins Ranch
Not only do they have fantastic customer service, they also have a fantastic product. Take a look at their website for more information.
Thanks again to Atkins Ranch!
What an amazing gesture of kindness for our Ellie!
Off The Advised Path
Almost two months ago I made the decision that 'no answers' and 'try this' were no longer acceptable answers for my Ellie. 'She will outgrow it.....we think.....at some point....' was beyond frustrating, when coupled with an allergist who saw through my eyes when her patch testing showed an intolerance to corn. 'WHERE IS SHE GETTING CORN?' he firmly had asked in a very demanding tone. Where? Her formula. 'We need to get her off.' Yes, I know. But how exactly?
Doctors are not trained in nutrition. In fact, it is so much NOT apart of their medical school that there is a separate degree for it, and they then refer you to a nutritionist. This is not something I am bitter about. The rise in information and advances in western medicine have created a situation where no doctor could know everything, and specialists have evolved in an effort to deal with exactly this. The new problem is body parts are connected and affect each other. The heart does not exist separately from the brain that tells it to pump, and the intestines do not exist separately from the blood that uses its nutrients.
So now what? There was not a doctor that could counsel me on creating a home made formula for Ellie. And our team of doctors all panicked for Ellie, using what information they had. This makes me appreciate them all, but did not give us answers.
Allergist: Get her off the formula. Put her on home made almond milk and see the head nutritionist at the hospital. She should be ok for a couple weeks like this and at this point needs to be off bad enough that we need to risk lack of nutrients and weight loss. (I am supposed to be ok with starving my child for a couple of weeks?)
Pediatric Gastrointerologist: Speak to our in-house nutritionist about what foods to trial and getting her off the formula, and keep the formula because at this time she is growing and appearing to 'thrive' where she is at. (I am supposed to be ok with ignoring the other symptoms I am seeing and the fact that she is steadily getting sicker?)
Pediatric Nutritionist in GI office: Transition her off of the formula and give her homemade almond milk. Try hemp milk and lamb and a vitamin and she should be fine. (I am supposed to be ok with taking at least four weeks to get her onto any kind of food, assuming she passes them all and we are not set back a couple of weeks with a fail?)
Pediatrician: Just looked at me in what appeared to be wide-eyed frustration as I told him about what the other doctors had said. He nodded his head as he listened to my concerns, and what I thought I was going to have to do. He said the equivalent of 'you do what you have to do for your child' and 'what I can do is give you an additional referral to the head nutritionist for help'.
Where did this leave us? Getting a referral to Stanford would take weeks, and getting in to Dr. J in New Jersey could take months. We didn't have this amount of time to wait with not even a guarantee of an answer.
What I did:
It was day seven of feeding Elianna only home made almond milk. She threw up every third or fourth bottle, was white in color, had sunken eyes, and barely walked. Her weight was dropping fast, and her eyes got cloudier and cloudier. I was told to persevere. That night, while on my knees crying for my child who I felt was dying before my eyes, I realized the answer had been right in front of me all along. For two years the information kept popping up from various angles.
And at that moment I resolved that things would be different. What did I have to lose? Nothing. It certainly couldn't get much worse. She was starving before my eyes.
I got up, made her a bottle of formula to buy us time, and risked the reactions she would have on it. Reintroducing the formula after her body had the time to rid itself of it meant her blood would react harder and faster when it was reintroduced. But it was better than no food and would buy us some time.
And I emailed Dr. Natasha Campbell-McBride. In the morning I would revisit my GAPS and SCD books.
Doctors are not trained in nutrition. In fact, it is so much NOT apart of their medical school that there is a separate degree for it, and they then refer you to a nutritionist. This is not something I am bitter about. The rise in information and advances in western medicine have created a situation where no doctor could know everything, and specialists have evolved in an effort to deal with exactly this. The new problem is body parts are connected and affect each other. The heart does not exist separately from the brain that tells it to pump, and the intestines do not exist separately from the blood that uses its nutrients.
So now what? There was not a doctor that could counsel me on creating a home made formula for Ellie. And our team of doctors all panicked for Ellie, using what information they had. This makes me appreciate them all, but did not give us answers.
Allergist: Get her off the formula. Put her on home made almond milk and see the head nutritionist at the hospital. She should be ok for a couple weeks like this and at this point needs to be off bad enough that we need to risk lack of nutrients and weight loss. (I am supposed to be ok with starving my child for a couple of weeks?)
Pediatric Gastrointerologist: Speak to our in-house nutritionist about what foods to trial and getting her off the formula, and keep the formula because at this time she is growing and appearing to 'thrive' where she is at. (I am supposed to be ok with ignoring the other symptoms I am seeing and the fact that she is steadily getting sicker?)
Pediatric Nutritionist in GI office: Transition her off of the formula and give her homemade almond milk. Try hemp milk and lamb and a vitamin and she should be fine. (I am supposed to be ok with taking at least four weeks to get her onto any kind of food, assuming she passes them all and we are not set back a couple of weeks with a fail?)
Pediatrician: Just looked at me in what appeared to be wide-eyed frustration as I told him about what the other doctors had said. He nodded his head as he listened to my concerns, and what I thought I was going to have to do. He said the equivalent of 'you do what you have to do for your child' and 'what I can do is give you an additional referral to the head nutritionist for help'.
Where did this leave us? Getting a referral to Stanford would take weeks, and getting in to Dr. J in New Jersey could take months. We didn't have this amount of time to wait with not even a guarantee of an answer.
What I did:
It was day seven of feeding Elianna only home made almond milk. She threw up every third or fourth bottle, was white in color, had sunken eyes, and barely walked. Her weight was dropping fast, and her eyes got cloudier and cloudier. I was told to persevere. That night, while on my knees crying for my child who I felt was dying before my eyes, I realized the answer had been right in front of me all along. For two years the information kept popping up from various angles.
And at that moment I resolved that things would be different. What did I have to lose? Nothing. It certainly couldn't get much worse. She was starving before my eyes.
I got up, made her a bottle of formula to buy us time, and risked the reactions she would have on it. Reintroducing the formula after her body had the time to rid itself of it meant her blood would react harder and faster when it was reintroduced. But it was better than no food and would buy us some time.
And I emailed Dr. Natasha Campbell-McBride. In the morning I would revisit my GAPS and SCD books.
Tuesday, March 15, 2011
Our Hope: Where Ellie Stands With Food
At this point we have had good progress with Ellie and the bone broths and boiled meats. We have given her zucchini for three days (boiled, de-seeded and skinned for ease of digestion) and she seems to have tolerated it well. Next steps include boiled onion and carrot.
She is still not eating on her own, and will not let us feed her which means that she is getting it all via the bottle and Vitamix. She will not take a sippy cup or any lidded cup either. I am beginning to think that the referral for Occupational Therapy may be a good idea after all. She also has extremely low muscle tone. Hopefully I can find a state agency to help and support us with that since our insurance does not win awards for being the most helpful and we have already created bills in the thousands.
My hope is that we will be able to provide a stricter daily schedule that gets her into the highchair more regularly, and surrounded by a plastic tarp, since a 19 month old eating like a 6 month old is capable of spreading her damage in a much larger radius.
I will be doing a home patch testing for egg whites and egg yolks this week. I am very hopeful that she will pass, because this would be a fantastic source of nutrition for her.
She is growing, and has thinned down dramatically. But she looks healthy. Her hair is growing! Her constipation is gone. And boy is she hungry! She often eats 18 ounces in one sitting now, and that includes 6 or 7 ounces of meat puree! Exciting stuff.....except it keeps a pot of broth cooking on the stove almost every day. Oh well. You won't hear me complain about that!
She is still not eating on her own, and will not let us feed her which means that she is getting it all via the bottle and Vitamix. She will not take a sippy cup or any lidded cup either. I am beginning to think that the referral for Occupational Therapy may be a good idea after all. She also has extremely low muscle tone. Hopefully I can find a state agency to help and support us with that since our insurance does not win awards for being the most helpful and we have already created bills in the thousands.
My hope is that we will be able to provide a stricter daily schedule that gets her into the highchair more regularly, and surrounded by a plastic tarp, since a 19 month old eating like a 6 month old is capable of spreading her damage in a much larger radius.
I will be doing a home patch testing for egg whites and egg yolks this week. I am very hopeful that she will pass, because this would be a fantastic source of nutrition for her.
She is growing, and has thinned down dramatically. But she looks healthy. Her hair is growing! Her constipation is gone. And boy is she hungry! She often eats 18 ounces in one sitting now, and that includes 6 or 7 ounces of meat puree! Exciting stuff.....except it keeps a pot of broth cooking on the stove almost every day. Oh well. You won't hear me complain about that!
Thursday, March 10, 2011
A List of Observations
Today is day 9 of taking Ellie off of the amino acid formula and putting her on bone broth and boiled meats only. Here are some observations based on physical conditions, as the cognitive improvement has already been huge.
Things that have disappeared:
Things that have disappeared:
- night time cough and congestion
- day time raspy breathing
- nasal boogies and snot
- massive ear drainage and constant ear wax
- puffy, stretched skin
- diaper rash
- girl part rash
- foggy head behavior
- dark, under-eye circles
- white tongue
- full body eczema
- rashed, red cheeks
- spots on teeth (in grooves of molars)
- low muscle tone
- stiff legged walking
- desire to eat food
- constipation
- increase in tantrums
- large range of volume - from whispers to screams, without much in between
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