We had our first ever FPIES meet up yesterday, Sunday December 12th 2010! It was great to meet the other moms and little ones face to face finally. The excitement, support and empathy flowed naturally. I think we each left Nichole's house feeling a little less stressed because we learnt the fears and daily burdens were shared. I was ironic how similar our coping skills are, I guess this is what helped bring us together. We are all seeking knowledge, support and help for our children. I have to process the whole experience as it is still hard for me to put in words. Just look at these cute little faces.

Did you wash your hands and mouth?

Did you wash your hands and mouth? This question is not aimed at my kids but instead at myself, and any other person going to touch my children. Every time I eat I make sure to wash my hands, mouth and any other part of me that came in contact with food. Sometimes I want to blurt it out before that prying hand touches my baby's soft skin. The soft skin that so easily brakes out in a rough rash, or blisters, or pimples that take days or weeks to clear due to the evil enemy we have come to know as food.

A simple thing like kissing my kids has been tainted. I must always think or wash before I kiss: "What did I eat? Did I wash my mouth?" Something as simple as this reminds me every day of our journey with protein intolerance. However that said I will stop, think and wash a thousand times a day because I just can't stop kissing those little cheeks!

Instinct

Recently I have heard a lot of moms of kids with FPIES, MPI and EGIDs talk about instinct. The burning in your gut that something is wrong with your child. Some Drs won't listen, some do listen and admit they don't know what is wrong with your child and then their are the few who listen and research and even better look at your research and together you find answers. We are lucky to have a pedi who listens and learns along with us but we still fumble along the way and our journey to find a team of Drs to work with is trying.

Seventeen months into this journey if one thing I have learnt like the other moms is to trust my instinct. I no longer need to hear a friend or someone else tell me, "yes that is a good choice to make". I do not say this to be arrogant but instead I say it because my instinct has worked best for my children's needs thus far. It has always been right and has gotten us to the point we are at today, i.e. two kids doing well on their current treatments. My family and friends have "normal" children and what works for their kids may not be the best thing for my kids.

Right now my instinct tells me that Heath is more sensitive to foods than Hayleigh is. It tells me that his medication is what is causing him to poop eight times a day all runny and mucusy. It tells me this is why his rash won't clear. It tells me that we should pull him off the medication so as not to sensitize him to foods to early as we did unknowingly with Hayls. It tells me that we have a lot of psychological work ahead of us with two kids unable to eat at parties, holidays and regular everyday school. It tells me that along with my husband we will provide the best environment for our kids and everything will be OK. It tells me that others may view the inability to eat as a handicap but we try to view it as a small bump in the road ahead, we try to place emphasis on what the kids can do not what they cannot do.

Busy as a bee

I have been beyond busy with a newborn and toddler at home and all the holiday festivities. We have finally gotten appointments to do patch testing (this is where foods are left on the skin for 48-72 hrs depending on with the Dr likes to do). We go in to start it on December 13th but the appointments are 2 hrs away so it will be a long week with us having to head to Sacramento for 3 different appointments.

After 4 weeks of cranberries we still were not sure if Hayls was reacting to them or not as her rash wouldn't go away. We decided to go ahead anyway and try blueberries. Well that pushed the rash over the edge and with 12 hrs pustules had formed and other GI reactions followed. So I am not sure if it was the blueberries alone or the cranberries with a mild reaction made it worse. So we are back to just Elecare and jarred carrots to get to baseline with Hayls.

Heath has been off of breast milk for almost 3 weeks now but his rash is coming back. The only other thing he is taking is Zegerid for his reflux so I am assuming that is causing the problems. However it is tricky to decide do we take him off or leave him on it.

Hopefully I wil have more time to blog in the coming weeks.

GI appointment

We saw a GI on November 4th. The appointment did not give us any definite answers but he did agree with my plan of how we proceed from here. It felt good to have support again. So we are still just suspecting some sort of EGID or MPI but essentially they are all interrelated and treatment will not be different even if we confirmed EGID as we do not want to use steroids as a long term treatment unless her life depends on it. He seems to think if she outgrows it, it will take years and she may be on a very limited diet. However she may never outgrow it and need to stay on an elemental diet.

He agrees that we should seek out an allergist who deals with these issues (we are looking to Stanford where there is one) and he recommends we seek out a dermatologist with experience in allergies. He is supportive of experimental treatments once benefits seem to outweigh risks. I am not to keen on experimental treatments but if it comes to that who knows what we will do, I guess it depends on a lot of things.

He gave us some medication to try that may stop a reaction if she takes it, but we aren't going to use it until we have at least 2 or 3 safe foods she can eat.

Overall it was great to have someone understand all the terminology I have become part of my daily life and be able to discuss all the medical issues and new research. My poor husband hears all this stuff from me on a daily basis but I don't think it understands it the way someone in the field would :-)

He was open to a lot of things and admitted this area is basically new and unchartered territory.

So for now we are happy with the GI and will add him to our team of Drs for the kids.

Protein Intolerance "PTSD"

It sounds strange to say PI can cause PTSD, but this is the only way I can describe it. Parents of kids with PI, FPIES, EGID or GERD may be able to relate to this phenomena. Let me explain.

The past 16 months have been tough to say the least. Some days I didn't think I could make it through. Somehow a baby crying for days on end has a way of making you feel.....well I can't even put it into words.....it just felt as if time and the world stood still and you could do nothing to help your child but cry with them.

Hayleigh had trouble eating (hell I wouldn't have ate if it felt like my chest was burning from the inside out and my stomach hurt everytime). She ate 2 to 3 ozs every 2 to 3 hours until she was about 8 weeks old. This was when the s*** hit the fan for want of a better term. She stopped eating well and started having sandifer's syndrome episodes. She would scream after 1/2 oz and contort her body in weird postures. I would have to feed her every hour or less and the whole process would start all over again. I would be tense and eventually it was wearing on me. The constant pain with eating was hard on us but worse for poor Hayleigh.

The other issue related to my "PTSD" is sleep. Or more the hell we have been through trying to get her to sleep. Unless you have a child in constant pain you may never understand our battles with sleep. I have never been one to think of co sleeping. I was always the person trying to talk parents out of their co sleeping habits. Well karma is a b***h. We now co sleep, yes my husband, Haleigh, Heath, our poodle and myself all on one bed, sometimes with Heath on his tucker wedge (which takes up half of our king size bed). I am currently thinking of maybe getting a bed bigger than our king size if it exists. I cannot remember the last time my husband and I slept next to each other. The current layout is Heath in the middle on his wedge with me on the edge (I get about 12 inches), Hayleigh next to the wedge, the dog curled up in the middle of the kids and my husband literally hanging off the edge. Many a night I wake up to go to the bathroom and I have to wake him so he doesn't fall off. Anyway when Hayleigh was about 10 months old and got to big for her wedge we attempted to move her into her own room. Until that point she had slept on her wedge in a pack and play in our room. However she was getting up every 30 mins to 2 hrs and we wanted to try the cry it out method in her own room. We had no idea she was in pain and it was keeping her up. Needless to say a week later her crib was in our room for good and she was in our bed every night once we went to bed. Even now she isn't in consistant pain as she was then and thankfully she doesn't wake up every 30 mins any more, but she still wakes every 2 to 4 hours to have a bottle and the only way for us to get sleep is to have her our bed. So I am totally for co sleeping if it gives me some sleep. Somehow I keep getting off topic! The point I am trying to get to is that putting her to sleep has always been hard because we had to have her up right 30mins after eating and even then if she fell asleep and we put her down she would wake up crying. Or she just wouldn't be able to settle to sleep. Sometimes I would sit in the glider for 2 hrs trying to get her to sleep. Even now she fights to fall asleep, maybe she has PTSD from all her pain.

When she was 6 months old I found out I was pregnant again and the first thing I did was cry. I cried because what if this baby was the same? What if no Dr. could tell me why my baby was in pain again? How could I help another baby if I can't help Hayleigh? I was terrified of going through all this again. I was terrified of the unknown; of putting another baby through all this pain.

Family and friends all told me "don't worry this baby will not be like Hayleigh". Over and over again I had family sing that song to me, but deep down I knew. I had done all the research, I had spoken to other families.

Well we are now going through the same issues. Hence my fears have become a reality, however I am working through my PTSD of feeding and sleeping. Every time Heath screams while I feed him, every time I hear his stomach make that noise warning me that something is bubbling, every time the burp or vomit is followed by screaming, every time he cries and cannot fall asleep, every time he repeats the cycle we have come to know as normal I remind myself to release the tension in my shoulders, to let them fall, I remind myself to breathe, I remind myself I am doing all I can to make his life as comfortable as possible right now. I remind myself that we will get to a better place and it is not my fault. I remind myself to enjoy him as much as possible because soon he will be walking and talking and I need to relax and enjoy him :-)

Following in his sister's footsteps

Heath is 6 weeks old today. We are already on our second medication trial for GERD (reflux disease) and we are in the process of transitioning from breast milk to an amino acid based formula. I have been dairy,soy and legume free for almost 3 months now and he is still having a reaction to something in my breast milk. He is covered in the same rash Hayleigh gets when she has a reaction to a food and there is no way to tell right now if his reflux is a result of a food allergy or reflux in an of itself.

It is said that babies don't discriminate taste until about 4 months of age. Well Heath hates the formula and only wants breast milk. I feel bad for the poor little guy but I think we need to do this. Hopefully he adjusts to the formula as well as his sister did and soon.

This time around it feels good to recognize the symptoms early and be proactive instead of reactive.

I forgot how much Hayleigh screamed and cried as a baby, until yesterday when my husband said Heath doesn't cry much. It is true he doesn't cry much in comparison to his big sister. After hearing my husband say this I realized I was tense every time I fed him. Now I remind myself to relax :-)

She is allergic to what?

When I say Hayleigh is allergic to ALL food, I always get the "blank" look and the question "what do you mean all food?"

I dread the question of what Hayleigh is allergic to when we are out with other people. They can never wrap their brain around the idea that someone can be allergic to food. Then some people get upset and they act as if she has a death sentence. My heart then sinks at the thought of having to convince another person that I am not crazy and my child is going to have as normal a life as possible.

This has occurred with family, friends and complete strangers. I have a harder time dealing with the people who keep wanting me to give her food because this is what a "normal" infant or toddler does: they eat. People do not understand the pain that food causes my daughter and NO PARENT wants to put their child in unnecessary pain. I have had people question my doings and even had people tell me things are all in my head. However Protein Intolerance is a real allergy and it is not pleasant for the sufferer.

Hayleigh has no one diagnosis her Drs call her MPI (Multiple food protein intolerant), FPIES (Food Protein Induced Enterocolitis Syndrome) and last visit EGID (Eosinophilic Gastrointestinal Disorders). These three things are all interrelated and just variants on a spectrum from what I understand. The allergic reaction takes place in the digestive tract and is Tcell mediated. Every 18 months the Tcells in the digestive tract shed and her reaction to a particular food at that time may reoccur or it may be she can tolerate the food. These disorders are also thought to be autoimmune disorders. Autoimmune disorders tend to run in my family so this makes sense. My mother has vertilogo and Addison's disease both of which are autoimmune disorders.

So lets go over the questions and get the answers straight:

What is your daughter allergic to?

Everything we have tried so far.

What does she eat then?

She is on an amino acid based medical formula. The proteins in it are totally broken down so technically her body does not have to interact with any proteins.

She also has one safe food: baby food jarred carrots (she cannot eat carrots we cook)

But she doesn't look as if anything is wrong with her.

No she doesn't because we work hard at her get enough formula. During the day she eats 6oz every 2 to 3hrs and at night she eats every 3 hrs.

Will she out grow this?

We have no idea. However the more foods a person reacts to the less likely it is they will outgrow this disorder. Hayleigh has reacted to over 30 foods so her chance of outgrowing this looks slim. Of course if she does we will be overjoyed, but if she doesn't she can still lead a normal healthy life using the formula she is on.

Finding a team to work with

We are proud to announce at Hayleigh's 16 month check up she was in the 91% for Height and 74% for weight despite her medical formula only diet! Her pediatrician is always surprised at how well she does for just being on an amino acid based formula.

Over the course of our journey I always felt like the over concerned parent and the last few months I have become somewhat laid back where as her pediatrician is now the one overly concerned. Which I am not complaining about at least now we have someone who is really listening and paying attention. So I brought up the fact that we do not have a team of Drs. Most kids with MPI and reactions to most food have at least a Pedi, GI and allergist, but have not found a GI or allergist knowledgeable about PI or EGIDs here. Her Pedi, Dr. B said she would work on it and I was surprised when I got a call only 1 hour after getting home from our appointment saying she had set up for us to see a GI who said he knows about MPI and EGI disorders. We have seen this GI before but Hayls was only 4 months old at the time and he said she didn't have GERD (which she does), but we are willing to see him again now that she is older and hopefully get some insight. If for some reason we do not get what we are looking for support wise Dr. B said she would be willing to look for someone else. Hopefully she will also contact the allergist I heard about in Stanford. We are keeping our fingers crossed and if not we have some work to do to get a good team of Drs going.

Hayleigh's story

Hayleigh was born after 28hrs of induced labor. She weighed in at 7lbs 9ozs and 19 3/4 inches. Once she was placed on my chest it was evident she was having trouble breathing. She was whisked away to the NICU for about 8 hrs and eventually was doing well on her own. She had trouble latching on the breast in the hospital and this continued for several days. Some feedings she would stay on the breast other times she would pull off and cry. I was told her latch was fine and to just continue trying. By day 3 she had lost over 10% of her body weight and we had to supplement with formula. For 4 weeks I pumped and tried to build up a supply while supplementing her with regular formula. She became a fussy baby crying between feeds and even giving trouble to drink from the bottle. She would only take 0.5 to 1 oz at a time and my constant goal was to feed her while she scream and arched in pain. Taking a shower or eating was impossible. My days were consumed with consoling her constant pain and crying and trying to get her to eat. By the time she was 6 weeks old I was convinced something was not right and showed up at her Pediatrician asking about reflux. We were sent away with Zantac compounded liquid and told to try it for 2 weeks. Needless to say it did not work. At this point we had switched from regular enfamil to organic earth's best formula to see if that would make a difference. We then tried compounded Prevacid for 3 weeks and still there was no improvement.

By the time Hayleigh was 3 months old she was in constant pain. She would have sandifer's syndrome episodes, constant hiccoughs, a rash all over her body (small red bumps which sometimes would look like pimples or blisters), five or more runny mucusy stools (which if not changed right away would burn through her skin), horrible smelling breath, constant congestion, wet burps sometimes with spit up, stomach pain (she would pull her legs up and scream for hours on end) and feeding was still an issue with only 0.5ozs at a time. It was starting to wear on me and I would cry when she cried. I felt horrible for not being able to make my baby better, I was her mother and was supposed to look out for her and make her feel well again. Our Pediatrician referred us to a Pediatric GI and I felt confident we would get some answers. He took us off the Prevacid and put her on Zegerid 20mg packets. I asked him about switching her formula and he said to try Nutramigen (a formula with partially broken down milk proteins). I agreed but asked about trying Neocate or Elecare (an amino acid based formula where the proteins are completely broken down for individuals with different GI issues). He gave me someElecare samples but said he did not think she needed it. We got a barium study of the digestive tract done and everything looked normal. Hayleigh started to do better on the Nutramigen and Zegerid for 2 weeks then all hell broke loose once again. All the same symptoms returned with full force. I switched her to Elecare and things slowly got a bit better over a period of 6 weeks. Most of the symptoms resolved but some remained, i.e. the not eating well, the sandifer's episodes and pain. We decided to go ahead and get a ph probe done when she was about 4 months old. However the GI wanted us to pull her off the medication for about a week before the test. We refused as she was already in pain and taking her off the medication suddenly would cause an acid rebound (up to double the amount of original acid produced in the stomach) and even more pain. We wanted to make sure the medication was doing a good job and once the ph probe came back normal it would show this. Well they ended up forcing us to stop the medication only 24hrs before the ph probe and of course her probe came back normal ( as the medication takes 48hrs to clear your system). After we left the hospital and were on our way home Hayleigh was screaming in pain as the medication had now left her system. The next day we were in the pediatrician's office with me openly crying and telling her we need to try things my way now. She said she was out of ideas and the GI basically told me Hayleigh did not have reflux or GI issues to seek help elsewhere. I asked her pediatrician to prescribe Zegerid 40mg packets as the 20mg packets had more sodium bicarbonate per mg and this alone can cause upset stomach, vomiting and pain. She agreed to write the prescription but refused to manage the medication because I wanted to use the recommended dosing from MARCI kids (Mid West Acid Reflux Children's Institute) and she thought the does was to high. She however agreed to speak with the head of the program at MARCI kids, Dr. Phillips (also the inventor of Zegerid) to check on the dosing. At this point I was so happy to have something new to try I went home feeling a bit lighter even though we were at our wits end. On a side note the bandages used to keep the ph probe in place caused a rash on that side of her face and blisters formed; it took almost 3 weeks to clear. This along with reactions to various brands of diapers seems to point to a latex allergy.

While waiting for the Zegerid 40mg to start working we used mylanta cherry supreme to take the edge off (we had started using it when she was about 3 months old along with the other meds). Within a few days we had a brand new baby and for the first time she seemed to be pain free. Her eating was still poor, but I could at least get 1 to 2 ozs in her at a time. To this day Hayleigh is on a high dose of Zegerid 40mg packets to manage her reflux/ food intolerances. When ever she has a reaction to a food trial we up her dosing until the reaction has passed.

When was 4 months old her pediatrician told us that it was no longer recommended to wait until later to introduce solids in children with allergies so we decided at 4 and 1/2 months to try sweet potatoes. After a few hours she started spitting up more (with her reflux she did not spit up a lot, she has silent reflux), was in pain again, broke out in a rash on her face and body (sometimes with blisters that would last for weeks), developed horrible acidic smelling breath again, acidic mucusy diarrhea that burnt the skin (causing screaming for a few days due to raw skin) and lack of appetite (she would stop drinking her Elecare) among other things. This happened again when we tried apples at 6 months. The reaction time was shorter and within 4 hrs she had big red patches all over her face, neck and trunk along with the usual symptoms. Only this time the vomiting and diarrhea were worse. Since then she has had reactions of varying degrees to all foods we have tried except Beechnut brand jarred carrots ( she reacts to carrots when I cook them). We have failed milk, soy, rice, bananas, apples, sweet potato, pears, peaches, potatoes, parsnips, grapes, strawberry, broccoli, avocados, watermelon, squash, fish, chicken, egg, Neocate Nutra, crackers (a few brands), teething biscuits (a few brands), Kix and Cheerios cereal, graham biscuits, Happy Belly puffs, homemade bread and a host of other foods.

Since birth we have seen her pediatrician more times than I can count on my fingers and toes. We have been to 2 pediatric GI's. She had physical therapy for 8 months for Torticollis, which was made worse do to her GERD and food reactions. She also had feeding therapy as she has issues with certain food textures.

The last 15 months have been eye opening to say the least and I could not have survived it without the support of my husband. Kenny has been my strength when I thought I could take no more. When people judge and tell you hurtful things (even though they are trying to help) he has been the one to ease my mind and remind me that no one knows Hayleigh like we do. No one knows her pain and what she has been through but us and we have to choose what is best for her. Having a baby is supposed to be a joyful event but the past year has been very trying and filled with questions. Our goal now is to move on to get answers.

Hayleigh is a happy healthy very talkative 15 month old who does not look like a child who is allergic to all food. I love her more than anything and even though I wish all these issues will disappear so she can live a normal life, her life will be great no matter what the outcome is. Currently at 15 months she is on Elecare and drinks 5 ozs every three hrs (including night time). She has carrots almost every day and we do a food trial once every few weeks to give her body time to recover. Her diagnosis at this time is MPI (Multiple food Protein Intolerance) and most likely EGID (Eosinophilic Gastrointestinal Disorder). We are not sure what the future holds for Hayleigh and for our family but whatever comes our way we will hold our heads up and keep a positive attitude. Once we accept and deal with her medical issues in a positive manner she will be better equipped to face whatever challenges life throws at her. Our biggest hurdle right now is having to explain to people why she cannot eat food. However with a lot of patience we try to educate people and help them to understand we are not starving our daughter but simply doing what is best for her.