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.