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 :-)