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 :-)