With the change of medical groups Ellie became the proud recipient of 7 specialist referrals. I think. I lost count. Some good. Some ridiculous. And some a flat waste of time.
My personal favorite was the new neurologists referral for an autism evaluation. Huh? When I questioned her she explained that she felt Ellie needed to be evaluated for harbored anger and management of emotion. Oh, and she would not look the doctor in the eye when on the examining table alone. Whatever. It was obvious that she really wanted to help get her the intense feeding and sensory therapy that she needs, so we will jump through whatever hoops we need to.
Neurologist also wants an EEG. No harm, no foul is the motto. What could it hurt? It would be good just to see. Might show something, or might show nothing. Afterwards we will determine if we should use medication. *AHEM* No, thanks. For starters, Ellie's seizures have been controlled since starting GAPS. Seizures are directly related to the immune system. Standard treatment protocols for epilepsy includes gut-thrashing medication and hope for seizure control through the ketogenic diet. Kids on keto have to be strictly monitored because keto does not meet all of their nutritional needs. In addition, kids with an epilepsy diagnosis can have treatment mandated should the doctor deem it necessary, and then Child Protective Services become involved. (yes, seriously.) An EEG may show seizure activity or it may not. In fact, I found it interesting that the first neurologist had one way he wanted the EEG done and the new neurologist another. At this point in time, there is no helpful reason to put Ellie through an EEG. An official epilepsy diagnosis at this point in the journey would add nothing. We are declining.
Another more obvious referral was to the allergist. It makes sense to the pediatrician we would need one of those. I didn't see the need quite as much, but agreed. I received a call from the allergist's office. They informed me that they were unable to get the information they needed so they expected me to get copies of all her medical records showing office visits, tests, summaries, etc. and once received the doctor would evaluate if she authorized an appointment (or some other funky wording like that). No, thanks. We declined. Not to sound like a smarty pants, but I think we have a pretty good handle on what her allergies are.
Referral to the Pediatric GI was up next. Good to know there is one of those around. I suppose at some point we should go meet him or her. One thing Ellie needs investigating right now is the neurological function of her lower spine and how it relates to her ability to go poop. There are lots of spinal complications (aside from Spina Bifida) that have potential to cause issue. The Pediatric GI would be aware of that and would help with getting any tests done. I had thought that would be the neurologist, (wouldnt that make sense - it is a neurological complication) but not so much. They just care about her brain.
Finally is the referral to genetics. Oh yea. That one. The referral that the first neurologist was wondering why I had never received. How could a child with such complications have never received a genetic work up? Especially one with EGID (oh, did I mention that? She has a new diagnosis in her file. We are compiling them at this point like hotels in Monopoly.). The EGID diagnosis is clinical, because I won't take her in for genetic testing or allow for another scope. They looked at her eosinophils from when she was an infant, reviewed her tests for the first 18 months of her life, evaluated her current sensitivities, and said it is an EGID. The first neurologist agreed that genetic testing was only if I was curious. He is one of the top neurologists in the country, so I found that interesting - he knew all about EGID and seizures.
At this point there is no reason for us to head to genetics. In fact, it could be harmful to Ellie to have the genetically proven diagnosis of EGID in her medical file, because it is considered an illness for life. (Pre-existing condition anyone? The girl has already had a colonsocopy.) Genetics will attempt to put Ellie in a box, where there is nothing but an excuse for her to be sick. Mainstream medicine would love to find a genetic tie to all conditions from a cold to a heart attack, which does nothing other than rip away hope for healing. The reality is that science is piling up for epi-genetics. Epi-genetics is the concept that environmental factors determine which genes turn on and off, and acknowledges that there are many genes that never 'turn on'. Over time some genes can even 'turn off'. How's that for hope? *insert thumbs up here*
By the way, at no time did anyone think we needed to see a nutritionist. Their examination of Ellie, review of her file, and who.knows.what.else was enough for them to believe she was getting her nutritional needs met. Or not, and just figured an EGID was enough proof that she shouldn't be eating. I found it amusing. In fact when I finally said to the second neurologist that 1.5 years ago her allergy patch testing left a third degree burn on her back from corn, she said: "Oh wow. She is so severe. You really need to make that clear to everyone you come into contact with, all the time, multiple times, because we as doctors hear 'food allergy' all the time and it usually means something very minor." Funny.
Showing posts with label MSPI. Show all posts
Showing posts with label MSPI. Show all posts
Thursday, August 16, 2012
Sunday, July 8, 2012
My Unbelief
I've had a change in perspective.
When Ellie was born I began to use the phrase 'here we go'. Here we go with a newborn who vomits, here we go moving to a new house two weeks before Christmas, here we go to the doctor again, here we go living in a bubble, here we go GAPS...here we go...here we go...here we go. That phrase always seemed to illustrate what I was feeling: deep breath, close your eyes, and JUMP! Each time I mustered up the ability to make the next leap, I was never quite sure how far I might fall or where I would land.
I have a couple of favorite Bible stories - and Peter walking on water is one of them. In case you are unfamiliar it goes something like this (a.la.my version) - The disciples of Jesus were in a boat in the sea during a crazy storm. They looked out across the water and saw a figure walking towards them. They yelled "ghost!" and were afraid. Through the loud and crazy rain, the bold, impulsive Peter called out, "Hey Jesus! If that is you tell me to come to you on the water!" To which Jesus shouted back, "come on out!" So Peter stepped out of the boat and onto the water, where he walked! But alas, it did not take him long to loose his faith and down he went into the water where he was forced to call out for help. Jesus reached out, and grabbed his hand before he sank into the waves.
This is the way I have always 'heard' the story - be it in my own reading, or listening to it taught. Poor Peter. He of little faith. He diverted his eyes from the One who kept him afloat, and down he sank. His bold, impulsive self was not faithful enough.
A few months back the Sunday sermon included this favorite story of mine, but this time it held a new significance. The pastor suggested that instead of focusing on the fact that Peter sank, we might make note of the fact that he was the only one that got out of the boat. Everyone else was a boat-sitter. Because of his faith, Peter was the only water-walker.
And then I realized: Peter stepped out of the boat expecting to walk on water. Why would he step out and expect to sink? He did not say 'here we go' and wait to see how far he would sink. Peter stepped out of the boat because he could see Jesus right there. Right in front of him. If he sank, He could shout out and He would be saved. He didn't worry about the end result because he knew it was taken care of by the One who loved Him the most. He had an expectation because he knew the promise: to be saved. Instead of saying "here we go!", Peter begged for permission to jump, and then shouted "I'm coming! Stay tuned for what Jesus is going to do!"
Oh, me of little faith.
I headed to the Bible again and began re-reading all the stories of the new testament where Jesus healed the sick, focusing on His interactions with children. And what I discovered is that Jesus healed anyone that came. He healed multitudes. And when he healed children, He told their parents to expect it.
He told them to have faith.
And He answered.
I retired the phrase 'here we go', and began expecting miracles. And He has been oh.so.faithful.
One night I was doing more reading about the quality of (stainless steel) pots and thought to myself: 'I suppose I should check the quality of the pot I warm Ellie's bottles in. I wonder why that has never occurred to me before. I will look into that tomorow.'
The next morning, for no reason, the handle broke off of that pot.
Ellie has not been sleeping well for several months, waking several times a night. I mentioned to a friend 'I wonder if I should start her back on this medication. I just don't know what I should do.'
That night she slept for 7 hours straight. And has dramatically improved sleep patterns every since.
Almost 1.5 years ago we began Ellie on the road to healing. She was 18 months old, and horribly sick. Critical, missing milestones and starving, with an empty promise of 'outgrowing it'...someday. That little girl no longer lives in this house.
Stay tuned for this little girl.
She may not eat much yet, but she is already well on her way. She won't just walk on water; she will move mountains.
Stay tuned.
When Ellie was born I began to use the phrase 'here we go'. Here we go with a newborn who vomits, here we go moving to a new house two weeks before Christmas, here we go to the doctor again, here we go living in a bubble, here we go GAPS...here we go...here we go...here we go. That phrase always seemed to illustrate what I was feeling: deep breath, close your eyes, and JUMP! Each time I mustered up the ability to make the next leap, I was never quite sure how far I might fall or where I would land.
I have a couple of favorite Bible stories - and Peter walking on water is one of them. In case you are unfamiliar it goes something like this (a.la.my version) - The disciples of Jesus were in a boat in the sea during a crazy storm. They looked out across the water and saw a figure walking towards them. They yelled "ghost!" and were afraid. Through the loud and crazy rain, the bold, impulsive Peter called out, "Hey Jesus! If that is you tell me to come to you on the water!" To which Jesus shouted back, "come on out!" So Peter stepped out of the boat and onto the water, where he walked! But alas, it did not take him long to loose his faith and down he went into the water where he was forced to call out for help. Jesus reached out, and grabbed his hand before he sank into the waves.
This is the way I have always 'heard' the story - be it in my own reading, or listening to it taught. Poor Peter. He of little faith. He diverted his eyes from the One who kept him afloat, and down he sank. His bold, impulsive self was not faithful enough.
A few months back the Sunday sermon included this favorite story of mine, but this time it held a new significance. The pastor suggested that instead of focusing on the fact that Peter sank, we might make note of the fact that he was the only one that got out of the boat. Everyone else was a boat-sitter. Because of his faith, Peter was the only water-walker.
And then I realized: Peter stepped out of the boat expecting to walk on water. Why would he step out and expect to sink? He did not say 'here we go' and wait to see how far he would sink. Peter stepped out of the boat because he could see Jesus right there. Right in front of him. If he sank, He could shout out and He would be saved. He didn't worry about the end result because he knew it was taken care of by the One who loved Him the most. He had an expectation because he knew the promise: to be saved. Instead of saying "here we go!", Peter begged for permission to jump, and then shouted "I'm coming! Stay tuned for what Jesus is going to do!"
Oh, me of little faith.
I headed to the Bible again and began re-reading all the stories of the new testament where Jesus healed the sick, focusing on His interactions with children. And what I discovered is that Jesus healed anyone that came. He healed multitudes. And when he healed children, He told their parents to expect it.
He told them to have faith.
Mark 9: 21-27
Jesus asked the boy’s father, “How long has he been like this?”
“From childhood,” he answered. “It has often thrown him into fire or water to kill him. But if you can do anything, take pity on us and help us.”
“‘If you can’?” said Jesus. “Everything is possible for one who believes.”
Immediately the boy’s father exclaimed, “I do believe; help me overcome my unbelief!”
When Jesus saw that a crowd was running to the scene, he rebuked the impure spirit. “You deaf and mute spirit,” he said, “I command you, come out of him and never enter him again.”
The spirit shrieked, convulsed him violently and came out. The boy looked so much like a corpse that many said, “He’s dead.” But Jesus took him by the hand and lifted him to his feet, and he stood up.
I prayed: help my unbelief.
I retired the phrase 'here we go', and began expecting miracles. And He has been oh.so.faithful.
One night I was doing more reading about the quality of (stainless steel) pots and thought to myself: 'I suppose I should check the quality of the pot I warm Ellie's bottles in. I wonder why that has never occurred to me before. I will look into that tomorow.'
The next morning, for no reason, the handle broke off of that pot.
Ellie has not been sleeping well for several months, waking several times a night. I mentioned to a friend 'I wonder if I should start her back on this medication. I just don't know what I should do.'
That night she slept for 7 hours straight. And has dramatically improved sleep patterns every since.
Almost 1.5 years ago we began Ellie on the road to healing. She was 18 months old, and horribly sick. Critical, missing milestones and starving, with an empty promise of 'outgrowing it'...someday. That little girl no longer lives in this house.
Stay tuned for this little girl.
She may not eat much yet, but she is already well on her way. She won't just walk on water; she will move mountains.
Stay tuned.
Friday, March 9, 2012
Bumpity Bump Bump
There is no doubt that the road toward feeding Ellie is one that has been bumpy. I used to joke with other moms about Dorie from Nemo (just keep swimming, just keep swimming!). Then I realized I had transitioned into more of a foot dragging trudge than a swim. Lately it has included a few breath taking sucker punches.
Ellie recently had her first post-GAPS seizure, and has been having some neurological complications ever since. Most of these involve her eyes, and they certainly may amount to nothing. But we learned that she appears to have been having regular seizures prior to going GAPS. It was an initial sucker punch, but one that I came to terms with quickly. It is not hard to make the leap from what we are already dealing with to neurology. There are lots of medical connections between the intestine and the brain. And the seizures are obviously controlled.
Sucker punch number two came shortly thereafter.
We recently took Ellie back for a second O.T. evaluation regarding feeding therapy. One year ago she was not considered far behind. Now, she has no problem standing out as that bottle fed almost-preschooler. We received good tips on body brushing and pressure points to desensitize her hyper-sensitive self. The body brushing was not received well by her, and I believe it is because of her head to toe eczema as a result of a recent trial. I continued with the pressure points and massage instead of brushing, and it has been working! One improvement is teeth brushing. She has been asking me to brush her teeth regularly when she has never allowed me near her mouth much before. The result was a new discovery. Wait for it.....
Ellie has a lip tie.
What? You were hoping for something a little more dramatic? Doesn't seem like much of a big deal? WELL....*ahem* let me TELL YOU THE DEAL.
Ellie has had a panel of doctors since she was 10 weeks old attempting to understand and explain her feeding difficulties. She has been scoped, poked, prodded, and pricked. She has had two complete OT evaluations for feeding issues, and been continually re-evaluated for an EGID. She had chronic respiratory issues, coughing, reflux, and unexplainable 'asthma but not really asthma' symptoms.
Noone. Not.one.person. has caught the lip tie, and the therapists never even looked in her mouth.
Now, we are not talking a small lip tie. We are talking a cant-pull-her-lip-away-from-her-teeth-and-why-does-she-have-such-a-gap-in-her-teeth sort of lip tie. And yes, I know 'well, that can be clipped easily and corrected with surgery.' But here is the deal.
1. Our insurance does not cover O.T. We pay over $600 a month out of pocket and get no O.T. benefits until after our extremely high individual deductible is met for Ellie. (as in thousands of dollars deductible)
2. Our insurance will cover minimal costs for a surgery to correct this.
3. The longer it goes, the more trouble she will have correcting speech and feeding habits. I listened to the 'oh that will just go away and is nothing' doctor suggestions for my 6 year old's tongue tie. Dozens of complications, one frenulectomy surgery, and permanent speech problems later, I wish I had never listened.
4. Did you know that in the first few months of life a tongue tie or LIP TIE can cause: colic, reflux, GERD, feeding refusal, constant feeding, distended belly from air swallowing, just to list a few.
Uh. Yeah. That number 4 would be Ellie. And would be classic infant FPIES symptoms.
*deeeeeeeeeeep breath*
Once I was able to inhale deeply and step away from that sucker punch, I was able to look at it a little more objectively. Do I think that the root of all Ellie's problems and what led to her FPIES diagnosis was a lip tie? NO. What I *do* think is that it was another factor that made things that much more complicated, and are certainly complicating things now. I did a quick (very small) poll and found four other lip tie or tongue tie's in the FPIES community. Isn't that interesting? Lip and tongue tie's are considered mid-line markers, if you would like something to visit doctor google about.
So we will be tackling the lip tie next, which now so easily explains why the girl can not get her lip onto a spoon no matter how hard she tries. And though it may not explain all of her beginning journey, it certainly shows how each individual babe has an incredible amount of factors that add to their overall health. From now on when I hear of that mom having trouble breastfeeding I will most certainly remember to say - hey! have you checked for a tongue or lip tie? they say they are nothing, but our experience says otherwise. it could be an easy fix now that saves you and your babe in the long run.
And how will we pay for this surgery? Beats me.
I have picked up my feet and moved from trudge to a steady forward motion that sounds more like a bumpity, bump, bump. This is partially in accepting that there will be sucker punches coming our way and I need to be prepared to roller-coaster right over them. I am not sure I will ever get to the point of waving my hands in the year and screaming in delight as our car heads down for the next challenge, but at least now I am in a place where I can remember we will head back up the other side.
Ellie recently had her first post-GAPS seizure, and has been having some neurological complications ever since. Most of these involve her eyes, and they certainly may amount to nothing. But we learned that she appears to have been having regular seizures prior to going GAPS. It was an initial sucker punch, but one that I came to terms with quickly. It is not hard to make the leap from what we are already dealing with to neurology. There are lots of medical connections between the intestine and the brain. And the seizures are obviously controlled.
Sucker punch number two came shortly thereafter.
We recently took Ellie back for a second O.T. evaluation regarding feeding therapy. One year ago she was not considered far behind. Now, she has no problem standing out as that bottle fed almost-preschooler. We received good tips on body brushing and pressure points to desensitize her hyper-sensitive self. The body brushing was not received well by her, and I believe it is because of her head to toe eczema as a result of a recent trial. I continued with the pressure points and massage instead of brushing, and it has been working! One improvement is teeth brushing. She has been asking me to brush her teeth regularly when she has never allowed me near her mouth much before. The result was a new discovery. Wait for it.....
Ellie has a lip tie.
What? You were hoping for something a little more dramatic? Doesn't seem like much of a big deal? WELL....*ahem* let me TELL YOU THE DEAL.
Ellie has had a panel of doctors since she was 10 weeks old attempting to understand and explain her feeding difficulties. She has been scoped, poked, prodded, and pricked. She has had two complete OT evaluations for feeding issues, and been continually re-evaluated for an EGID. She had chronic respiratory issues, coughing, reflux, and unexplainable 'asthma but not really asthma' symptoms.
Noone. Not.one.person. has caught the lip tie, and the therapists never even looked in her mouth.
Now, we are not talking a small lip tie. We are talking a cant-pull-her-lip-away-from-her-teeth-and-why-does-she-have-such-a-gap-in-her-teeth sort of lip tie. And yes, I know 'well, that can be clipped easily and corrected with surgery.' But here is the deal.
1. Our insurance does not cover O.T. We pay over $600 a month out of pocket and get no O.T. benefits until after our extremely high individual deductible is met for Ellie. (as in thousands of dollars deductible)
2. Our insurance will cover minimal costs for a surgery to correct this.
3. The longer it goes, the more trouble she will have correcting speech and feeding habits. I listened to the 'oh that will just go away and is nothing' doctor suggestions for my 6 year old's tongue tie. Dozens of complications, one frenulectomy surgery, and permanent speech problems later, I wish I had never listened.
4. Did you know that in the first few months of life a tongue tie or LIP TIE can cause: colic, reflux, GERD, feeding refusal, constant feeding, distended belly from air swallowing, just to list a few.
Uh. Yeah. That number 4 would be Ellie. And would be classic infant FPIES symptoms.
*deeeeeeeeeeep breath*
Once I was able to inhale deeply and step away from that sucker punch, I was able to look at it a little more objectively. Do I think that the root of all Ellie's problems and what led to her FPIES diagnosis was a lip tie? NO. What I *do* think is that it was another factor that made things that much more complicated, and are certainly complicating things now. I did a quick (very small) poll and found four other lip tie or tongue tie's in the FPIES community. Isn't that interesting? Lip and tongue tie's are considered mid-line markers, if you would like something to visit doctor google about.
So we will be tackling the lip tie next, which now so easily explains why the girl can not get her lip onto a spoon no matter how hard she tries. And though it may not explain all of her beginning journey, it certainly shows how each individual babe has an incredible amount of factors that add to their overall health. From now on when I hear of that mom having trouble breastfeeding I will most certainly remember to say - hey! have you checked for a tongue or lip tie? they say they are nothing, but our experience says otherwise. it could be an easy fix now that saves you and your babe in the long run.
And how will we pay for this surgery? Beats me.
I have picked up my feet and moved from trudge to a steady forward motion that sounds more like a bumpity, bump, bump. This is partially in accepting that there will be sucker punches coming our way and I need to be prepared to roller-coaster right over them. I am not sure I will ever get to the point of waving my hands in the year and screaming in delight as our car heads down for the next challenge, but at least now I am in a place where I can remember we will head back up the other side.
Thursday, March 1, 2012
Cherries on Top
It is hard to find blogs or resource websites that provide real food and GAPS information without any fluff. Those of us in the trenches with severe situations get tired of wading through the waffling opinions and fence sitters who don't have to worry about a child having a life threatening reaction to the chemicals in a sticker. A 'virtual' friend has a no-fluff website I truly appreciate, complete with a section titled 'Cherries On Top'. This section caught my attention because it is exactly the situation we are in.
Any autoimmune condition has a spectrum. Food allergies and FPIES are no different. GAPS heals the majority of those with autoimmune disease without additional supplementation. Still....I know too well by now that when I hear 'majority', I can count Ellie into the 'minority'. The emotions behind that, and the reasons I believe this to be true, are material for another post. But as I hear great success stories from other moms in the GAPSkids forum, I am affirmed that Ellie's body is having trouble jump-starting her healing.
The average person can plan to be on GAPS for at least 2 years, moving through the stages at an individual pace. I have heard Dr. Cowan mention to plan on 32 months. Dr. Natasha says a child before the age of 5 has the ability to heal quicker than an adult, and will have much more healing success on GAPS than an adult who has been sick for decades (my summary, not a direct quote).
Ellie has been on the barely beginning stage for over a year now. This is not typical. Her inability to progress is complicated, but largely in part to her body's inability to detox naturally. The body has an amazing detoxification system that takes care of many things on it's own. Environmental pollutants, occasional ingestion of toxic foods, ...you name it. It binds it up and shoots it out via the colon (a little over simplified there). Unfortunately it takes proper digestion and nutrition for all of that to work.
One year later, Ellie is still not making sufficient bile, and not detoxing properly. We have given her body a year of healing, and have now decided to give a few new things a shot. They are not things we should have tried at the beginning, and I want to be sure that is clear for those on the GAPS journey. Again: 80%+ do not need additional supplementation beyond GAPS protocols.
So what's the plan? Well due to the recent probiotic drama, her body is having great trouble getting itself back under control. We have stopped giving her coconut oil entirely. She is back to her diet of broth, meat, zucchini, iodine paint, liver, fermented cabbage juice and GutPro. Lots of detox baths are on the list as well. And we are continuing two prescriptions we started shortly after our visit to see the doc- one is a liver enzyme, the other is a hard one to explain. They are being delivered topically, and in a base that should be safe. She has not appeared to have any reaction to the base but if her eczema refuses to clear after pulling coconut oil we will have to take a look at these medications next. Because of the recent events we have no idea if they are helping yet. They are both well studied medications for bowel disease, and our hope is that they will help move along the healing process. Our intent is not for her to be on these medications for life. (Due to that whole spectrum issue I no longer say things like 'long term', because that is relative. Everything for Ellie is long term.) The medications are tools to help GAPS, if that makes sense?
Forward march, this time with the cherries on top. Short term healing for a life time of eating. Healing sounds so much better than a life time of the alternative. Now to remember that 'short term' is relative to the spectrum.
Any autoimmune condition has a spectrum. Food allergies and FPIES are no different. GAPS heals the majority of those with autoimmune disease without additional supplementation. Still....I know too well by now that when I hear 'majority', I can count Ellie into the 'minority'. The emotions behind that, and the reasons I believe this to be true, are material for another post. But as I hear great success stories from other moms in the GAPSkids forum, I am affirmed that Ellie's body is having trouble jump-starting her healing.
The average person can plan to be on GAPS for at least 2 years, moving through the stages at an individual pace. I have heard Dr. Cowan mention to plan on 32 months. Dr. Natasha says a child before the age of 5 has the ability to heal quicker than an adult, and will have much more healing success on GAPS than an adult who has been sick for decades (my summary, not a direct quote).
Ellie has been on the barely beginning stage for over a year now. This is not typical. Her inability to progress is complicated, but largely in part to her body's inability to detox naturally. The body has an amazing detoxification system that takes care of many things on it's own. Environmental pollutants, occasional ingestion of toxic foods, ...you name it. It binds it up and shoots it out via the colon (a little over simplified there). Unfortunately it takes proper digestion and nutrition for all of that to work.
One year later, Ellie is still not making sufficient bile, and not detoxing properly. We have given her body a year of healing, and have now decided to give a few new things a shot. They are not things we should have tried at the beginning, and I want to be sure that is clear for those on the GAPS journey. Again: 80%+ do not need additional supplementation beyond GAPS protocols.
So what's the plan? Well due to the recent probiotic drama, her body is having great trouble getting itself back under control. We have stopped giving her coconut oil entirely. She is back to her diet of broth, meat, zucchini, iodine paint, liver, fermented cabbage juice and GutPro. Lots of detox baths are on the list as well. And we are continuing two prescriptions we started shortly after our visit to see the doc- one is a liver enzyme, the other is a hard one to explain. They are being delivered topically, and in a base that should be safe. She has not appeared to have any reaction to the base but if her eczema refuses to clear after pulling coconut oil we will have to take a look at these medications next. Because of the recent events we have no idea if they are helping yet. They are both well studied medications for bowel disease, and our hope is that they will help move along the healing process. Our intent is not for her to be on these medications for life. (Due to that whole spectrum issue I no longer say things like 'long term', because that is relative. Everything for Ellie is long term.) The medications are tools to help GAPS, if that makes sense?
Forward march, this time with the cherries on top. Short term healing for a life time of eating. Healing sounds so much better than a life time of the alternative. Now to remember that 'short term' is relative to the spectrum.
Thursday, February 9, 2012
It's a GAPS-iversary!
On the night of February 10, 2011, I held a dying child in my arms.
Her weight had plummeted, she was dehydrated, and her elemental formula had failed her. I spent that night rocking a screaming child, cleaning up vomit, and staring into her dull eyes. I was paralyzed by fear.
We had been told:
absolutely do NOT feed her animal products
she is horrifically allergic to corn
there are no medical studies
feeding her is by trial and error
We had been instructed to:
take her off the elemental formula
feed her homemade almond milk and her safe foods (a handful of fruits)
try lamb
try a multi-vitamin with corn as an ingredient
wait for an appointment with a 'top nutritionist'
We had been 'reassured':
she can go at least a month before we need to be concerned about her malnourishment affecting her
Her doctors had always marveled that she continued to grow and maintain her weight in the 90+ percentile, in spite of her medical problems and limited diet. Her lack of hair, puffy body, and swollen joints were just signs of a chubby baby. And now her weight had begun to decline for the first time in her life, and there was expressed concern for her 'entering her failure to thrive'. Her body was tired and worn out from fighting.
We followed the advice we were given, and she dropped 22 ounces in less than 3 weeks time. And on the night of February 10, 2011, I was certain she may not make it until morning.
Fear. I could never explain the fear.
I will never forget kneeling beside my bed in anger and fear and panic, and thinking it completely ridiculous that I would live in one of the richest nations in the world, yet there was no answer for my daughter.
The actual dates are muddy since email dates do not match blog post dates; I certainly was not focused on taking notes. I had already purchased the GAPS book and had skimmed it. My brain was a muddled mess of GAPS facts, what the doctors were telling me, and what I had found in my own research. I look back at my blog posts and cringe: I had no idea what I was doing and no one to ask. There are a lot of things I should have done....differently. And a lot of things I did not understand. But by mid-March, and after 5 weeks, we had Ellie entirely on stage 1 of the GAPS introduction healing diet.
It was hard work. And it was petrifying.
Miraculously there was one other FPIES mom on the other side of the continent who had decided to start her FPIES twins on GAPS the same week, and without either of us knowing. Praise God for miracles such as this. Her support over the last year has helped to keep us moving forward. Never underestimate the importance of support.
Tomorrow it will be a year since I sent my first email to Dr. Natasha, and she responded with exactly what I needed to hear: You can heal your daughter.
One year ago tomorrow, someone I had never met saved her life.
And I vowed I would not be quiet about it.
GAPS heals autoimmune disease. Period. It is not a band aid. It is not a fluke. It is not a trendy diet or a prescription for a select few. It is scientifically backed, time tested, and designed for even the most difficult autoimmune diseases. And in the face of fear, it provides hope.
Need hope?
Her weight had plummeted, she was dehydrated, and her elemental formula had failed her. I spent that night rocking a screaming child, cleaning up vomit, and staring into her dull eyes. I was paralyzed by fear.
We had been told:
absolutely do NOT feed her animal products
she is horrifically allergic to corn
there are no medical studies
feeding her is by trial and error
We had been instructed to:
take her off the elemental formula
feed her homemade almond milk and her safe foods (a handful of fruits)
try lamb
try a multi-vitamin with corn as an ingredient
wait for an appointment with a 'top nutritionist'
We had been 'reassured':
she can go at least a month before we need to be concerned about her malnourishment affecting her
Her doctors had always marveled that she continued to grow and maintain her weight in the 90+ percentile, in spite of her medical problems and limited diet. Her lack of hair, puffy body, and swollen joints were just signs of a chubby baby. And now her weight had begun to decline for the first time in her life, and there was expressed concern for her 'entering her failure to thrive'. Her body was tired and worn out from fighting.
We followed the advice we were given, and she dropped 22 ounces in less than 3 weeks time. And on the night of February 10, 2011, I was certain she may not make it until morning.
Fear. I could never explain the fear.
I will never forget kneeling beside my bed in anger and fear and panic, and thinking it completely ridiculous that I would live in one of the richest nations in the world, yet there was no answer for my daughter.
The actual dates are muddy since email dates do not match blog post dates; I certainly was not focused on taking notes. I had already purchased the GAPS book and had skimmed it. My brain was a muddled mess of GAPS facts, what the doctors were telling me, and what I had found in my own research. I look back at my blog posts and cringe: I had no idea what I was doing and no one to ask. There are a lot of things I should have done....differently. And a lot of things I did not understand. But by mid-March, and after 5 weeks, we had Ellie entirely on stage 1 of the GAPS introduction healing diet.
It was hard work. And it was petrifying.
Miraculously there was one other FPIES mom on the other side of the continent who had decided to start her FPIES twins on GAPS the same week, and without either of us knowing. Praise God for miracles such as this. Her support over the last year has helped to keep us moving forward. Never underestimate the importance of support.
Tomorrow it will be a year since I sent my first email to Dr. Natasha, and she responded with exactly what I needed to hear: You can heal your daughter.
One year ago tomorrow, someone I had never met saved her life.
And I vowed I would not be quiet about it.
GAPS heals autoimmune disease. Period. It is not a band aid. It is not a fluke. It is not a trendy diet or a prescription for a select few. It is scientifically backed, time tested, and designed for even the most difficult autoimmune diseases. And in the face of fear, it provides hope.
Need hope?
Wednesday, April 6, 2011
Where, Oh Where, Did Our Good G.I. Go?
We had a great GI. He diagnosed Ellie with MSPI at 12 weeks old and FPIES shortly after the introduction of food. This, in the FPIES world, is unheard of. Why? Because for most doctors around the country FPIES is unheard of.
Our GI landed in Sacramento after learning from some great FPIES docs in Chicago. He was the new Pediatric GI in his office, and most likely why we got in to see him. He was supportive, listened, and had an amazing amount of knowledge. Sometimes he still gave me the 'you are a crazy mom' look, but that was OK, because he followed it up with 'I have no idea. That makes no sense.' He got us diagnosed. He got us moving forward. And I am convinced he saved Ellie's life. And he left. BUMMER!
About two months ago the news escaped through the local FPIES mama's that he was expecting his first child and moving to Texas to be near family. DARN! I scheduled a follow up for Ellie right away, and pushed for him to do the upper biopsy and dissacharidases test that we had been putting off. After looking at me and saying, "My leaving is not a good reason to do a biopsy," I further discussed with him why I felt it was time to do it and how there were a few remaining questions that needed to be answered for Ellie. He agreed. (I also did not want him to leave and then have one of the other, less knowledgeable doctors, perform these tests or know nothing about them....but I kept that part to myself).
Ellie's procedure was performed about 5 weeks before he was to leave. I could have sworn he said he was leaving April 1. We were not having success moving Ellie past the meat broths and onto vegetables, and she had huge issue with carrot, which made me pause to wonder if the dissacharide (sugar intolerance) test would shed light on this. I then realized it was the last week of March and I had not heard from the GI. Wait a minute! He had emailed a few times with preliminary results, and said he was waiting on the final test to provide a treatment plan.
The last Monday of March I called the GI office to check in, and was told - "He is gone." What!?!? I was MAD. He told me he would check in before leaving! He just left??? Just like that??? Now what was I to do? I asked to speak with his nurse and waited for a call back.
And that was when things changed. It was as if we had been sucked into a new realm. I received a glimpse of what it must be like for FPIES moms who had to fight from the beginning, received no help, and some of who even were accused of Munchhausen by proxy.
The new nurse is who called. To tell me that the results were lost and had to be requested again. And that there were no open appointments to get Ellie in to one of the other GI docs, even though she needed to be seen and had a food fail. Did she need to go to the emergency room? No. OK well the next appointment was not for 4 weeks or more. Who did I want her to see? Dr. D was scheduled out to May, and Dr. M the end of April. Why? Because Ellie is a new patient. I argued. But they want to have enough time for the first appointment. Ridiculous. Call me with the results when they get in. Get me the results of the test.
Another phone call. What are the test results? Can't give them out because no doctor has read them to interpret. Give me the results! Here are the numbers but I can't counsel you on what they mean. They are low - very low. I would believe that she needs to be seen sooner rather than later so you need to see Dr. M. OK. Soon. How soon? The end of April. That doesn't sound like a priority appointment. It's all they have. Another phone call. Has a doctor seen the test at this point? Yes I can read you his notes. Please do. His notes say that he does not believe the results to be consistent with CSID and that the other numbers do not make sense. There was an error with the biopsy.
There was an ERROR with the BIOPSY? He is saying Dr. B made an error with this test and none of the others that were FINE?
No. He is not saying Dr. B made the error. He is saying the lab made the error.
OH...that lab that is one of the only ones in the country to even do this lab?? The EXPERT lab?
Silence.
I would like a copy of the results so I know how to feed my daughter. Have the nutritionist call me. And try to get us in sooner.
And with that I knew it was time for a change. I went from an understanding doctor who never made us wait more than a few days to be seen because of the urgency of Ellie's condition, to an office that could not fit her in. This is not acceptable to me, and I really don't care how short handed they are after losing our GI. I don't care that the new nurse does not know what FPIES is, or that the remaining GI's do not know Elianna's history. I don't care who has won what award for fantastic medical contribution, or how great of a colonoscopy these other GI's can perform. I care that my daughter needs to be seen by a knowledgeable doctor when she is ill, and that does not wait four weeks unless you live in a country other than this one with less than stellar medical care. I am not new to this. What is that expression? This is not my first time at the rodeo? I am not the new FPIES mama looking for an answer and being sent away with 'she has the flu'. I am a Professional FPIES mama. And I come equipped with experience, information, medical studies, and an attitude of advocacy for my child.
Hello Dr. M. Nice to meet you.
Our GI landed in Sacramento after learning from some great FPIES docs in Chicago. He was the new Pediatric GI in his office, and most likely why we got in to see him. He was supportive, listened, and had an amazing amount of knowledge. Sometimes he still gave me the 'you are a crazy mom' look, but that was OK, because he followed it up with 'I have no idea. That makes no sense.' He got us diagnosed. He got us moving forward. And I am convinced he saved Ellie's life. And he left. BUMMER!
About two months ago the news escaped through the local FPIES mama's that he was expecting his first child and moving to Texas to be near family. DARN! I scheduled a follow up for Ellie right away, and pushed for him to do the upper biopsy and dissacharidases test that we had been putting off. After looking at me and saying, "My leaving is not a good reason to do a biopsy," I further discussed with him why I felt it was time to do it and how there were a few remaining questions that needed to be answered for Ellie. He agreed. (I also did not want him to leave and then have one of the other, less knowledgeable doctors, perform these tests or know nothing about them....but I kept that part to myself).
Ellie's procedure was performed about 5 weeks before he was to leave. I could have sworn he said he was leaving April 1. We were not having success moving Ellie past the meat broths and onto vegetables, and she had huge issue with carrot, which made me pause to wonder if the dissacharide (sugar intolerance) test would shed light on this. I then realized it was the last week of March and I had not heard from the GI. Wait a minute! He had emailed a few times with preliminary results, and said he was waiting on the final test to provide a treatment plan.
The last Monday of March I called the GI office to check in, and was told - "He is gone." What!?!? I was MAD. He told me he would check in before leaving! He just left??? Just like that??? Now what was I to do? I asked to speak with his nurse and waited for a call back.
And that was when things changed. It was as if we had been sucked into a new realm. I received a glimpse of what it must be like for FPIES moms who had to fight from the beginning, received no help, and some of who even were accused of Munchhausen by proxy.
The new nurse is who called. To tell me that the results were lost and had to be requested again. And that there were no open appointments to get Ellie in to one of the other GI docs, even though she needed to be seen and had a food fail. Did she need to go to the emergency room? No. OK well the next appointment was not for 4 weeks or more. Who did I want her to see? Dr. D was scheduled out to May, and Dr. M the end of April. Why? Because Ellie is a new patient. I argued. But they want to have enough time for the first appointment. Ridiculous. Call me with the results when they get in. Get me the results of the test.
Another phone call. What are the test results? Can't give them out because no doctor has read them to interpret. Give me the results! Here are the numbers but I can't counsel you on what they mean. They are low - very low. I would believe that she needs to be seen sooner rather than later so you need to see Dr. M. OK. Soon. How soon? The end of April. That doesn't sound like a priority appointment. It's all they have. Another phone call. Has a doctor seen the test at this point? Yes I can read you his notes. Please do. His notes say that he does not believe the results to be consistent with CSID and that the other numbers do not make sense. There was an error with the biopsy.
There was an ERROR with the BIOPSY? He is saying Dr. B made an error with this test and none of the others that were FINE?
No. He is not saying Dr. B made the error. He is saying the lab made the error.
OH...that lab that is one of the only ones in the country to even do this lab?? The EXPERT lab?
Silence.
I would like a copy of the results so I know how to feed my daughter. Have the nutritionist call me. And try to get us in sooner.
And with that I knew it was time for a change. I went from an understanding doctor who never made us wait more than a few days to be seen because of the urgency of Ellie's condition, to an office that could not fit her in. This is not acceptable to me, and I really don't care how short handed they are after losing our GI. I don't care that the new nurse does not know what FPIES is, or that the remaining GI's do not know Elianna's history. I don't care who has won what award for fantastic medical contribution, or how great of a colonoscopy these other GI's can perform. I care that my daughter needs to be seen by a knowledgeable doctor when she is ill, and that does not wait four weeks unless you live in a country other than this one with less than stellar medical care. I am not new to this. What is that expression? This is not my first time at the rodeo? I am not the new FPIES mama looking for an answer and being sent away with 'she has the flu'. I am a Professional FPIES mama. And I come equipped with experience, information, medical studies, and an attitude of advocacy for my child.
Hello Dr. M. Nice to meet you.
Thursday, January 27, 2011
You Know You Are An FPIES Mom When....
In light of today's recent incidents, ok, well vomit is not really ALL that out of the ordinary....
*ahem*
While reflecting on this morning's events, I began to think I would deter from my catching up posts to this. There are a ton of these that circulate the internet for various topics, so why can't I have my own?
You know you are an FPIES mom when....
1. you are covered in vomit from head to toe, you are mentally noting how it smells for documentation purposes, and it is all in a days work.
2. you tell people that your child has an 'extremely rare immune systems DISEASE' and dont tell them it isn't contagious because you are tired of explaining what it really is, and their reaction can be somewhat fun.
3. you find yourself wishing someone gave out honorary medical degrees.
4. you have to trial a band-aid.
5. you hope it is 'just' a virus, or a cold, or an ear infection, or.......
6. you have a dated portfolio of poop pictures.
7. you understand acronyms such as MSPI, FPIES, PIC and EE.
8. you need a t-shirt that says "Please don't feed the child".
9. you have a spreadsheet on your fridge to record food eaten, time eaten, amount eaten, and if any vomiting or poop episodes followed.
10. you view words such as anal, or obsessive compulsive, or overprotective, or helicopter parenting all completely blase', and replace them with expressions like 'do you mind if I vacuum your floor'? or 'she will have ice chips with that'.
Teehee! :)
*ahem*
While reflecting on this morning's events, I began to think I would deter from my catching up posts to this. There are a ton of these that circulate the internet for various topics, so why can't I have my own?
You know you are an FPIES mom when....
1. you are covered in vomit from head to toe, you are mentally noting how it smells for documentation purposes, and it is all in a days work.
2. you tell people that your child has an 'extremely rare immune systems DISEASE' and dont tell them it isn't contagious because you are tired of explaining what it really is, and their reaction can be somewhat fun.
3. you find yourself wishing someone gave out honorary medical degrees.
4. you have to trial a band-aid.
5. you hope it is 'just' a virus, or a cold, or an ear infection, or.......
6. you have a dated portfolio of poop pictures.
7. you understand acronyms such as MSPI, FPIES, PIC and EE.
8. you need a t-shirt that says "Please don't feed the child".
9. you have a spreadsheet on your fridge to record food eaten, time eaten, amount eaten, and if any vomiting or poop episodes followed.
10. you view words such as anal, or obsessive compulsive, or overprotective, or helicopter parenting all completely blase', and replace them with expressions like 'do you mind if I vacuum your floor'? or 'she will have ice chips with that'.
Teehee! :)
Monday, October 18, 2010
That Fateful Appointment
Nearing the end of June we headed back to the GI doctor for Ellie's blood test results and hopefully some answers. What we discussed:
Only on Nutramigen Lipil. She licks foods but most of the time will not eat them and is becoming more and more disinterested. Trigger foods result in vomiting and non-bloody diarrhea and then resolves. Foods tried included sweet potato, rice, banana, wheat products, barley, butternut squash.
I was unable to tell him if she cried more or less at any point because she had cried since birth with no visible pattern. She also slept at odd intervals and was completely unable to get on a schedule, so I could not address that as well. On occasion she did have low grade fevers that appeared at the same time as food exposure.
Blood test results showed mostly normal but some things on the low side. She showed negative to celiacs, and all IgE tests (RAST) came back negative except for a slight peanut. (I found out later that these tests were not very accurate anyway since she has to have eaten the foods for her blood to respond).
He disappeared to discuss with the pediatric nutritionist and then returned. "There is this very rare condition..." he began... "we have only seen a few"...."less than 3% of children"...."FPIES"...."I want her to see an allergist for a second opinion"...."no way to diagnose except by symptoms and process of eliminating anything else it could be"...."we dont really know"...."not a lot of info"...."there is another option for formula we should try"...."stop giving her foods for now"...."establish a plan with the nutritionist"..."here is a copy of the most recent study done"...
WHAT? WHAT was he talking about? Less than how many kids? They don't KNOW anything? This was not what I had wanted to hear. June. 2010. My Ellie is 10 months old and nearing her first birthday. No WAY. Something called FPIES? Food protein? She cant have protein? Rice has protein? So do green vegetables? All food? I just did a lot of nodding and repeating. The plan? Start with the least allergic foods with the lowest levels of protein, preferably all organic. Start with apples, apricots, plums. Nothing else. Keep with the Nutramigen Lipil. Soon she will be a year and we can try other options. And here is a referral to the allergist.
Only on Nutramigen Lipil. She licks foods but most of the time will not eat them and is becoming more and more disinterested. Trigger foods result in vomiting and non-bloody diarrhea and then resolves. Foods tried included sweet potato, rice, banana, wheat products, barley, butternut squash.
I was unable to tell him if she cried more or less at any point because she had cried since birth with no visible pattern. She also slept at odd intervals and was completely unable to get on a schedule, so I could not address that as well. On occasion she did have low grade fevers that appeared at the same time as food exposure.
Blood test results showed mostly normal but some things on the low side. She showed negative to celiacs, and all IgE tests (RAST) came back negative except for a slight peanut. (I found out later that these tests were not very accurate anyway since she has to have eaten the foods for her blood to respond).
He disappeared to discuss with the pediatric nutritionist and then returned. "There is this very rare condition..." he began... "we have only seen a few"...."less than 3% of children"...."FPIES"...."I want her to see an allergist for a second opinion"...."no way to diagnose except by symptoms and process of eliminating anything else it could be"...."we dont really know"...."not a lot of info"...."there is another option for formula we should try"...."stop giving her foods for now"...."establish a plan with the nutritionist"..."here is a copy of the most recent study done"...
WHAT? WHAT was he talking about? Less than how many kids? They don't KNOW anything? This was not what I had wanted to hear. June. 2010. My Ellie is 10 months old and nearing her first birthday. No WAY. Something called FPIES? Food protein? She cant have protein? Rice has protein? So do green vegetables? All food? I just did a lot of nodding and repeating. The plan? Start with the least allergic foods with the lowest levels of protein, preferably all organic. Start with apples, apricots, plums. Nothing else. Keep with the Nutramigen Lipil. Soon she will be a year and we can try other options. And here is a referral to the allergist.
Friday, October 15, 2010
Something Still Not Quite Right
Ellie's continual discomfort and vomiting made me uneasy. I should take the time to mention that we are not talking spit up, or normal baby vomit. We are talking projectile, curdled, and large quantities. Doctors said it should get better when she started solids because it would weigh things down...such as stomach acid. Hmm. I began to research the introduction of solid foods and discovered that other countries don't share the perspective we have here about delaying foods, and in fact, the American Association of Pediatrics is considering revising their standpoint. This discovered, coupled with wanting to stop her vomiting and pain, and with the need for sleep, I dove into the introduction of solids for Elianna.
I did not take good notes during this phase because I had no idea there was a need. I grabbed all the traditional first foods and went for it, not expecting to hit a curve ball. We tried, rice cereal, oat cereal, sweet potatoes, avocado. She received the spoon well at the beginning, but after one or two tries of any food she would clamp her mouth shut and refuse. And the vomiting! It got worse and worse. For about 4 - 6 weeks I attempted to get some food into Elianna. Her stool became horribly green and disgusting with a bizarre acidic smell. Her butt burned within minutes if I didnt change her diaper right away, and she began throwing up within minutes of eating. About 6 weeks into trying food I attempted banana. Like most of the other foods, the first one or two times seemed ok. But by about the third try she was vomiting. Banana?! Really?? At this point I knew I must be nuts. How could any baby be vomiting, crying, and screaming after eating sweet potatoes, rice cereal, or banana?? Something was wrong.
I decided that maybe she had celiacs. I gave her oat cereal instead. Nothing worked! I headed back to the GI yet again and this time I expressed my frustration and concern. I want her tested for Celiacs, I declared. The GI agreed, saying that he had doubt and that we needed to start aggressively eliminating what could be wrong. Keep her on the Nutramigen Lipil, and do some tests.
(Note: She continued to gain weight and grow, staying above the 90th percentile at all times. This alone baffled the doctors and I believe continues to be a struggle for us. Oddly, her outer appearance does not match that of her inner, so 'proving' she is sick has become an issue at times. I felt there were small signs such as sunken, dark eyes and puffy body features but nothing that got attention. But more on that later)
After our appointment with the GI we headed down to the lab where vial after vial of blood was drawn from Elianna. I couldn't believe the amount they had to take!
Our fantastic GI spent much time communicating with me over email and phone. And back in to his office to discuss the results.
I did not take good notes during this phase because I had no idea there was a need. I grabbed all the traditional first foods and went for it, not expecting to hit a curve ball. We tried, rice cereal, oat cereal, sweet potatoes, avocado. She received the spoon well at the beginning, but after one or two tries of any food she would clamp her mouth shut and refuse. And the vomiting! It got worse and worse. For about 4 - 6 weeks I attempted to get some food into Elianna. Her stool became horribly green and disgusting with a bizarre acidic smell. Her butt burned within minutes if I didnt change her diaper right away, and she began throwing up within minutes of eating. About 6 weeks into trying food I attempted banana. Like most of the other foods, the first one or two times seemed ok. But by about the third try she was vomiting. Banana?! Really?? At this point I knew I must be nuts. How could any baby be vomiting, crying, and screaming after eating sweet potatoes, rice cereal, or banana?? Something was wrong.
I decided that maybe she had celiacs. I gave her oat cereal instead. Nothing worked! I headed back to the GI yet again and this time I expressed my frustration and concern. I want her tested for Celiacs, I declared. The GI agreed, saying that he had doubt and that we needed to start aggressively eliminating what could be wrong. Keep her on the Nutramigen Lipil, and do some tests.
(Note: She continued to gain weight and grow, staying above the 90th percentile at all times. This alone baffled the doctors and I believe continues to be a struggle for us. Oddly, her outer appearance does not match that of her inner, so 'proving' she is sick has become an issue at times. I felt there were small signs such as sunken, dark eyes and puffy body features but nothing that got attention. But more on that later)
After our appointment with the GI we headed down to the lab where vial after vial of blood was drawn from Elianna. I couldn't believe the amount they had to take!
Our fantastic GI spent much time communicating with me over email and phone. And back in to his office to discuss the results.
And the Journey Continues
November 2009 through March/April of 2010 we continued with the pattern we had established, no questions asked. No more visible blood in Ellie's stool, and she continued to grow and measure in the 90 percentile. Vomiting continued, as did stool problems, but overall we didn't question it. The crying was less, the extreme pain seemed to be gone, and we just assumed what we had left was 'personality'. This view was encouraged by doctors, and I just resigned myself to having no clothing without stains.
We were instructed to delay the introduction of solids, starting at 6 months with rice cereal, and adding vegetables and fruits. Sounded pretty standard. At 8 or 9 months we could introduce cooked noodles, lean meats, and beans. The restrictions were: no milk or soy until after 1 year, no egg or tree nuts until after 2 years, and no peanuts, fish, or shellfish until after 3 years. "By postponing diet the introduction of food allergens, the development of food hypersensitivity is delayed in high-risk infants but this does not prevent the disorder". That final statement made me think that there was no hurry to get onto solids, so I figured we would wait until a year to introduce most. By April and 8 months of age, Elianna was still not sleeping through the night. She woke frequently, cried lots, ate a LOT of formula, and was a chubby, roley-poly baby. I decided that I had better introduce some food to help her sleep at night and make her feel more full.
I had no idea that this would quickly start our new adventure and change our lives forever.
We were instructed to delay the introduction of solids, starting at 6 months with rice cereal, and adding vegetables and fruits. Sounded pretty standard. At 8 or 9 months we could introduce cooked noodles, lean meats, and beans. The restrictions were: no milk or soy until after 1 year, no egg or tree nuts until after 2 years, and no peanuts, fish, or shellfish until after 3 years. "By postponing diet the introduction of food allergens, the development of food hypersensitivity is delayed in high-risk infants but this does not prevent the disorder". That final statement made me think that there was no hurry to get onto solids, so I figured we would wait until a year to introduce most. By April and 8 months of age, Elianna was still not sleeping through the night. She woke frequently, cried lots, ate a LOT of formula, and was a chubby, roley-poly baby. I decided that I had better introduce some food to help her sleep at night and make her feel more full.
I had no idea that this would quickly start our new adventure and change our lives forever.
Sunday, October 10, 2010
The First Diagnosis
The next couple weeks we were back and forth between the pediatrician and the GI several times. I was pleased at the amount of communication that went on between the two. I went on a drastic elimination diet in an attempt to see improvement in her vomiting and diarrhea. I had already eliminated dairy and soy, and over the next couple weeks I had eliminated all of the top allergens as well, and was down to eating mostly vegetables. There was no improvement in Elianna. Diapers were less bright red, but she was still extremely lethargic, crying and vomiting a lot, and not meeting milestones. We had received the diagnosis of milk/soy protein intolerance. (*note: they now know that the soy protein is extremely similar in structure to the diary protein, thus dairy protein issues should include the elimination of soy as well) The GI had sent us home with a can of over the counter Nutramigen Lipil, and encouraged me to give it a shot. I took one look at the back of the can and cried. How could these ingredients be better for her than breast milk? It made no sense. And the price tag on this formula was going to be a hardship.
I felt affirmed when the pediatrician thought it bizarre to tell me to stop EBF, and was on the phone again with the GI. The result was the pediatrician telling me that I had to eat, and that she was only getting worse. Sometime around 12 weeks Elianna filled her diaper yet again with blood, and I was on the phone with the GI to tell them there was no improvement with my elimination diet. The nurse called back and very firmly informed me that if I did not start the formula THAT night, Elianna would be too anemic and must be hospitalized. I became angry as she said to me, "I know this sounds counter-intuitive, and makes no sense, but you need to trust us on this one. You have to start her tonight." I hung up the phone and cried. I made a bottle, handed it to Jason, and went for a walk.
When I returned, the house was quiet, and Elianna was on the floor in the living room. She had drank the entire bottle. I walked over and took a cautious look. She was moving, smiling, and extremely active. So active that I immediately thought she was having an adverse reaction to the formula and was having some type of seizure. In my panic, Jason put his arm around me and said "honey, look at her. She is happy after eating, she is smiling, and she is active like we have never seen her before". He was right! I did not even recognize her because she was not vomiting, screaming in pain, or laying like a lump. Amazing!
Within 48 hours her diapers no longer included visible blood, and her behavior improved (less fussiness and signs of pain). Her diapers resembled that of an EBF baby, so to me things were looking fantastic. The GI had been correct, and she could not even digest the protein structure in my breast milk. We had found an answer (for now). Hallelujah!
(The insurance company refused to pay for her formula because she had not been hospitalized, and so we began footing the expense which ranged between $500 - $800 a month to feed her.)
I felt affirmed when the pediatrician thought it bizarre to tell me to stop EBF, and was on the phone again with the GI. The result was the pediatrician telling me that I had to eat, and that she was only getting worse. Sometime around 12 weeks Elianna filled her diaper yet again with blood, and I was on the phone with the GI to tell them there was no improvement with my elimination diet. The nurse called back and very firmly informed me that if I did not start the formula THAT night, Elianna would be too anemic and must be hospitalized. I became angry as she said to me, "I know this sounds counter-intuitive, and makes no sense, but you need to trust us on this one. You have to start her tonight." I hung up the phone and cried. I made a bottle, handed it to Jason, and went for a walk.
When I returned, the house was quiet, and Elianna was on the floor in the living room. She had drank the entire bottle. I walked over and took a cautious look. She was moving, smiling, and extremely active. So active that I immediately thought she was having an adverse reaction to the formula and was having some type of seizure. In my panic, Jason put his arm around me and said "honey, look at her. She is happy after eating, she is smiling, and she is active like we have never seen her before". He was right! I did not even recognize her because she was not vomiting, screaming in pain, or laying like a lump. Amazing!
Within 48 hours her diapers no longer included visible blood, and her behavior improved (less fussiness and signs of pain). Her diapers resembled that of an EBF baby, so to me things were looking fantastic. The GI had been correct, and she could not even digest the protein structure in my breast milk. We had found an answer (for now). Hallelujah!
(The insurance company refused to pay for her formula because she had not been hospitalized, and so we began footing the expense which ranged between $500 - $800 a month to feed her.)
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