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!
Thursday, March 17, 2011
The Method To My Madness
Who is Dr. Natasha Campbell-McBride?
- She is a doctor of neurology
- She is a doctor of nutrition
- She obtained her first degree in Russia
- She obtained her second degree in the UK
- She practices medicine in the UK
- She previously worked as a neurosurgeon
- She is the mom of a child previously diagnosed with Autism
- She has done extensive research on the 'gut/brain connection'
While she has her own field experience and medical work dating back to the early 80's, she also works with other doctors all over the globe and does an excellent job of compiling research. This includes the Specific Carbohydrate Diet. (You may find a bunch of websites dedicated to which is 'better', GAPS or SCD, but the truth is they fall in the same group.)
Her original focus was to heal her son, and investigate the autism spectrum. What resulted was a compilation of information connecting intestinal health to overall health and nutrition. She promotes underlying health and healing protocols based on medical research and experience, combined with the ability to recognize individual gut and immune system conditions.
To me, she was the unheard of - medicine combined with nutrition.
Now I do not wear rose colored glasses. I am not/was not hoping for a miracle fix. And I did not randomly pick a doctor off of the internet. I had done my research, which included speaking to other GAPS homes and patients over the course of two years. But seriously, ....SERIOUSLY. What did we have to lose?
So I emailed her, doubting I would ever get a response. Yet to my surprise, I received a personalized response to Ellie's condition within 24 hours.
And what I received was hope. HOPE. Let me say it again:
HOPE
And the best sentence in her email?
"...children at her age recover quite quickly once you start feeding them properly."
So you see, there IS a method to my going out on a limb and choosing a path other than what Ellie's doctors can give. And this method does not come from the quack witch doctor on the corner. It comes from a brilliant, experienced, doctor of neurology and nutrition, who has made it her goal to help other mothers around the globe. Not with a magic pill. Not with a prescribed medicine. But with a challenge to examine the environment in my home, the food on my table, and the toxic load that Ellie has inherited from me. Overwhelming? Yes. But finally a place to start.
- She is a doctor of neurology
- She is a doctor of nutrition
- She obtained her first degree in Russia
- She obtained her second degree in the UK
- She practices medicine in the UK
- She previously worked as a neurosurgeon
- She is the mom of a child previously diagnosed with Autism
- She has done extensive research on the 'gut/brain connection'
While she has her own field experience and medical work dating back to the early 80's, she also works with other doctors all over the globe and does an excellent job of compiling research. This includes the Specific Carbohydrate Diet. (You may find a bunch of websites dedicated to which is 'better', GAPS or SCD, but the truth is they fall in the same group.)
Her original focus was to heal her son, and investigate the autism spectrum. What resulted was a compilation of information connecting intestinal health to overall health and nutrition. She promotes underlying health and healing protocols based on medical research and experience, combined with the ability to recognize individual gut and immune system conditions.
To me, she was the unheard of - medicine combined with nutrition.
Now I do not wear rose colored glasses. I am not/was not hoping for a miracle fix. And I did not randomly pick a doctor off of the internet. I had done my research, which included speaking to other GAPS homes and patients over the course of two years. But seriously, ....SERIOUSLY. What did we have to lose?
So I emailed her, doubting I would ever get a response. Yet to my surprise, I received a personalized response to Ellie's condition within 24 hours.
And what I received was hope. HOPE. Let me say it again:
HOPE
And the best sentence in her email?
"...children at her age recover quite quickly once you start feeding them properly."
So you see, there IS a method to my going out on a limb and choosing a path other than what Ellie's doctors can give. And this method does not come from the quack witch doctor on the corner. It comes from a brilliant, experienced, doctor of neurology and nutrition, who has made it her goal to help other mothers around the globe. Not with a magic pill. Not with a prescribed medicine. But with a challenge to examine the environment in my home, the food on my table, and the toxic load that Ellie has inherited from me. Overwhelming? Yes. But finally a place to start.
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
A Confirmed Diagnosis
Last week we received our first biopsy results for Elianna's procedure.
Summary of the doctor notes are as follows: Stomach, small intestine and colon are all completely normal, with some rare eosinophils found in the esophogus. Because of her restricted diet it is impossible to know 100% that she does not have Eosinophilic esophagitis (EE) based on this scope and biopsy. Time will tell as she outgrows FPIES by 2-3 years of age, and as new foods are introduced to see if there are any issues. We are still waiting on the specific biopsy done for sugar intolerance. What this confirms is her diagnosis of FPIES based on the initial results the day of the scope.
Now before you get too excited about this summary, let me say that there are GREAT things here, and some things we have to take a little more cautiously.
First: what we have is a confirmed diagnosis. Elianna most definitely has FPIES, which we already knew, but we were doing the procedure to eliminate any additional complications, additional diagnosis, and look for secondary conditions such as sugar intolerance or villus atrophy. No additional complications were found. GREAT news.
Second: What Elianna has is called Illeal Lymphoid Nodular Hyperplasia and Non-Specific Colitis. The first is characteristic of FPIES, which means inflamed lymph nodes in the colon. The second, colitis, was a lot worse as an infant. This scope and biopsy showed improvement in this. I have no doubt it is due to the introduction of bone broth prior to the procedure. More GREAT news.
***note before continuing: We love our GI, but he is still a doctor, and still human. He provides information for us based on his knowledge and current information on FPIES which is limited for the medical community in its entirety. The FPIES mamas remain the experts, by far, based on experience and being in the trenches. Where was that honorary medical degree, anyway?
There always seems to be something 'lost' between the documented results of a test from the lab, and the interpretation by the doctor. Granted, it is the doctors job to interpret, but it is often directed by the amount of information he/she has, as well as their personal bias. It is like my job as a teacher. I speak and give professional advice based on my experience and knowledge. In no way can I know everything, or see all that the parent sees. With that in mind....
Third: Stomach, small intestine and colon are all completely normal was translated from no definite diagnostic abnormality. It did not say no inflammation, but showed that the colitis was on the mend. GOOD news!
Fourth: Elianna does not show signs of EE at this time based on what she was currently eating. This is GREAT news as we move forward with the broths, and also shows that she may potentially have less issue with her trigger foods in the future if we can enable some intestinal healing. EE is a much more permanent label, which includes scarring and lots of esophageal pain. Though we can not get a complete confirmation that she does not have EE, I was thrilled that there were no signs of scarring, especially with the extensive amount of vomiting and reflux her little body has endured.
Fifth: Still waiting on the test regarding the various types of sugars. This is a highly specific test only done by one lab in the country (as I understand it). Sugar intolerance is primarily a secondary condition when there is much damage and extensive leaky gut syndrome. The body simply can not handle sugars. This has not been a large concern of ours at this point, but I believe that due to my desire to eliminate all other possible complications and our GI's not wanting to have to put her under again, he conducted this test.
Sixth: Outgrowing FPIES. *sigh* This is an FPIES mother's dream. But unfortunately not the reality for most, and is only medical speak for 'we don't know'. Outgrowing something is not a scientific explanation for anything. You can not conduct a research study on it, except to document when symptoms stop. On average, they THINK, it stops around 2 or 3 years of age. But that was based on no research and very few numbers. The medical community is now estimating 1 in every 1,000 children in the U.S. have it. But they don't know, and some doctors estimate there are more. They do not know if it is on the rise or previously undiagnosed.
Many doctor currently studying FPIES believe it is NOT outgrown. The condition can improve, and most likely will, if we can keep them alive long enough and provide treatment that does not do additional damage. But this comment shows that even the best of doctors are limited in what they can provide. This does not depress me or cause me concern, because there are things that can be done if we can just find each individual path. Just take a look at these results - mostly GREAT!
Summary of the doctor notes are as follows: Stomach, small intestine and colon are all completely normal, with some rare eosinophils found in the esophogus. Because of her restricted diet it is impossible to know 100% that she does not have Eosinophilic esophagitis (EE) based on this scope and biopsy. Time will tell as she outgrows FPIES by 2-3 years of age, and as new foods are introduced to see if there are any issues. We are still waiting on the specific biopsy done for sugar intolerance. What this confirms is her diagnosis of FPIES based on the initial results the day of the scope.
Now before you get too excited about this summary, let me say that there are GREAT things here, and some things we have to take a little more cautiously.
First: what we have is a confirmed diagnosis. Elianna most definitely has FPIES, which we already knew, but we were doing the procedure to eliminate any additional complications, additional diagnosis, and look for secondary conditions such as sugar intolerance or villus atrophy. No additional complications were found. GREAT news.
Second: What Elianna has is called Illeal Lymphoid Nodular Hyperplasia and Non-Specific Colitis. The first is characteristic of FPIES, which means inflamed lymph nodes in the colon. The second, colitis, was a lot worse as an infant. This scope and biopsy showed improvement in this. I have no doubt it is due to the introduction of bone broth prior to the procedure. More GREAT news.
***note before continuing: We love our GI, but he is still a doctor, and still human. He provides information for us based on his knowledge and current information on FPIES which is limited for the medical community in its entirety. The FPIES mamas remain the experts, by far, based on experience and being in the trenches. Where was that honorary medical degree, anyway?
There always seems to be something 'lost' between the documented results of a test from the lab, and the interpretation by the doctor. Granted, it is the doctors job to interpret, but it is often directed by the amount of information he/she has, as well as their personal bias. It is like my job as a teacher. I speak and give professional advice based on my experience and knowledge. In no way can I know everything, or see all that the parent sees. With that in mind....
Third: Stomach, small intestine and colon are all completely normal was translated from no definite diagnostic abnormality. It did not say no inflammation, but showed that the colitis was on the mend. GOOD news!
Fourth: Elianna does not show signs of EE at this time based on what she was currently eating. This is GREAT news as we move forward with the broths, and also shows that she may potentially have less issue with her trigger foods in the future if we can enable some intestinal healing. EE is a much more permanent label, which includes scarring and lots of esophageal pain. Though we can not get a complete confirmation that she does not have EE, I was thrilled that there were no signs of scarring, especially with the extensive amount of vomiting and reflux her little body has endured.
Fifth: Still waiting on the test regarding the various types of sugars. This is a highly specific test only done by one lab in the country (as I understand it). Sugar intolerance is primarily a secondary condition when there is much damage and extensive leaky gut syndrome. The body simply can not handle sugars. This has not been a large concern of ours at this point, but I believe that due to my desire to eliminate all other possible complications and our GI's not wanting to have to put her under again, he conducted this test.
Sixth: Outgrowing FPIES. *sigh* This is an FPIES mother's dream. But unfortunately not the reality for most, and is only medical speak for 'we don't know'. Outgrowing something is not a scientific explanation for anything. You can not conduct a research study on it, except to document when symptoms stop. On average, they THINK, it stops around 2 or 3 years of age. But that was based on no research and very few numbers. The medical community is now estimating 1 in every 1,000 children in the U.S. have it. But they don't know, and some doctors estimate there are more. They do not know if it is on the rise or previously undiagnosed.
Many doctor currently studying FPIES believe it is NOT outgrown. The condition can improve, and most likely will, if we can keep them alive long enough and provide treatment that does not do additional damage. But this comment shows that even the best of doctors are limited in what they can provide. This does not depress me or cause me concern, because there are things that can be done if we can just find each individual path. Just take a look at these results - mostly GREAT!
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
Wednesday, March 9, 2011
To Jersey, Or Not To Jersey
Having no standard treatment protocols or relevant studies on FPIES here in the U.S. has caused some major heart ache for many moms. While many fight for answers, direction, or the insurance company to pay for an amino acid based formula so that their infant can thrive, other parents have been faced with accusations of Munchhausen by proxy when doctors can not make sense of things in their little box of western medicine. In response to this, two communities of moms have evolved - one on facebook, and one on baby center. Other groups have evolved, such as facebook's PIC page, and the FPIES United Family Fund. There is some over lap, but the baby center community has by far been larger and included more FPIES moms worldwide. I discovered these groups near the beginning of Ellie's journey and during the time of desperation that all FPIES moms seem to go through - is there anyone else out there or is is just MY child??
This community of (mostly) moms has helped me to answer questions, provided support when things look grim, and share experiences in an effort to find similarities that might make a springboard for treatment. Sometime back, right before the 'remove-the-formula-and-put-her-on-only-almond-milk' crisis for Elianna, one of those bold and very committed moms posted information about a doctor in New Jersey who was doing research on Tcells and immune system disease, primarily from the perspective of connecting it with autism. She had provided some amazing help for some moms already, and was currently conducting a study that FPIES children could participate in.
Excitement quickly erupted in this community of moms, and I caught the fever. Who is this doctor? What does she know? How is she helping? Should we travel? How do we get in? How do we qualify? Suddenly there appeared to be hope in a medical world that has previously only answered 'we don't really know' and 'there is not treatment for that'.
Jason brought me crashing back to reality when he reminded me that we don't have the money to get there, even if we could get an appointment. But I am confident that if we are meant to go, God will find a way, so I called. I called and left two voice mail messages, and then sent a lengthy email addressed to the doctor. Yet I heard nothing back. Other moms were making appointments, and the 'we got in!' and 'we got an appointment!' comments seemed to be everywhere except for our Ellie.
I stepped back and decided we would wait. The mom's that had appointments and lived closer promised to report back with more information and details on their experiences, so we waited. And the next thing I heard was that this doctor would see anyone in her private practice, and not turn anyone away who was willing to travel. This was great news!
As moms have begun to share their experiences, I have developed more questions than answers. There has been talk of immuno-suppressant drugs, blood tests, probiotics, anti-fungal medications, and amino acid formulas, just to highlight a few. The biggest fuzz in my head is connected to a large panel of blood tests that this doctor conducts to identified triggers and paint a more thorough picture of the condition of each individual immune system. Explanations and comments from other moms have included 'more to come', or 'waiting for the results to get answers', or 'hopefully we will know more soon', but this does not tell me what is being tested, or why. I don't even truly need to understand how it is done, but who does blood work without saying 'we are looking for such-and-such'? Without this piece, I will not truly know if it might be beneficial for us to travel there, so we wait.
What IS clear is that this doctor recognizes the need for individualized treatment, is brilliant, and has great understanding of protein intolerance and intestinal health. But she does not have all of the answers. And perhaps the key word is 'yet'. It is true that if money was not an issue, I would have boarded a plane long ago. But co-payments, specialists, compounded medications, and other expenses have already snatched up our spare pennies. At this point I can not justify packing up our bone broth and trekking across the country without hearing an inkling of hope. I have worked hard to find hope in the midst of no answers, and blood tests that simply say 'she is bad' or 'she can't eat' would not do anything for us. What am I missing? What questions could she answer for us at this point? I am not sure. So right now we wait.
This community of (mostly) moms has helped me to answer questions, provided support when things look grim, and share experiences in an effort to find similarities that might make a springboard for treatment. Sometime back, right before the 'remove-the-formula-and-put-her-on-only-almond-milk' crisis for Elianna, one of those bold and very committed moms posted information about a doctor in New Jersey who was doing research on Tcells and immune system disease, primarily from the perspective of connecting it with autism. She had provided some amazing help for some moms already, and was currently conducting a study that FPIES children could participate in.
Excitement quickly erupted in this community of moms, and I caught the fever. Who is this doctor? What does she know? How is she helping? Should we travel? How do we get in? How do we qualify? Suddenly there appeared to be hope in a medical world that has previously only answered 'we don't really know' and 'there is not treatment for that'.
Jason brought me crashing back to reality when he reminded me that we don't have the money to get there, even if we could get an appointment. But I am confident that if we are meant to go, God will find a way, so I called. I called and left two voice mail messages, and then sent a lengthy email addressed to the doctor. Yet I heard nothing back. Other moms were making appointments, and the 'we got in!' and 'we got an appointment!' comments seemed to be everywhere except for our Ellie.
I stepped back and decided we would wait. The mom's that had appointments and lived closer promised to report back with more information and details on their experiences, so we waited. And the next thing I heard was that this doctor would see anyone in her private practice, and not turn anyone away who was willing to travel. This was great news!
As moms have begun to share their experiences, I have developed more questions than answers. There has been talk of immuno-suppressant drugs, blood tests, probiotics, anti-fungal medications, and amino acid formulas, just to highlight a few. The biggest fuzz in my head is connected to a large panel of blood tests that this doctor conducts to identified triggers and paint a more thorough picture of the condition of each individual immune system. Explanations and comments from other moms have included 'more to come', or 'waiting for the results to get answers', or 'hopefully we will know more soon', but this does not tell me what is being tested, or why. I don't even truly need to understand how it is done, but who does blood work without saying 'we are looking for such-and-such'? Without this piece, I will not truly know if it might be beneficial for us to travel there, so we wait.
What IS clear is that this doctor recognizes the need for individualized treatment, is brilliant, and has great understanding of protein intolerance and intestinal health. But she does not have all of the answers. And perhaps the key word is 'yet'. It is true that if money was not an issue, I would have boarded a plane long ago. But co-payments, specialists, compounded medications, and other expenses have already snatched up our spare pennies. At this point I can not justify packing up our bone broth and trekking across the country without hearing an inkling of hope. I have worked hard to find hope in the midst of no answers, and blood tests that simply say 'she is bad' or 'she can't eat' would not do anything for us. What am I missing? What questions could she answer for us at this point? I am not sure. So right now we wait.
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