Wednesday, January 11, 2012

Gluten Vacation

Our GI doctor has been wanting Jack to try gluten to see if he still reacts, for about 2 years now.
We were not comfortable with the idea. Why mess with a good thing, right?
Jack had never had a super severe reaction to gluten, no vomiting or turning green, but his digestive track stops all together. He doesn't have a BM. He has gone 8 days without a BM and ended up with intussusception. Also, his behavior is effected, he screams, sasses and turns into a complete monster, probably due to the constipation.
So we were not on board... well, until last friday that is.

We were at his 6 month GI appointment and the nurse begged me again, "We really need to start trying new foods. I know you guys are hesitant, but we are sure he will do fine."

I wanted to say no, I wanted to grab little healthy Jacky and run out of there, but I was sure I would be chased by child protective services.

I am sure that the doctor wrote on Jack's chart, "Loony parents, do not want what's best for child. Won't let Jack eat ANYTHING!"

So I agreed. We didn't want to tell anyone, because we didn't want to get anyone's hopes up. But on Saturday we decided to start him on gluten to see if he would still react. He ate english muffins, granola, bread, candy, tortillas, crackers and more. Jack was so excited, I found him at the dining table giggling to himself, on more than one occasion. When I asked him what was so silly, he would say, "Nothing is silly, I am so excited that I am eating GLUTEN, duh!"

He felt okay on Saturday and Sunday, the excitement that he felt would have hid any icky feelings if there were any.

Monday he didn't have a BM, but we still went forth.

Today, Tuesday, I got a call from his teacher... he felt awful.
More than the pain in his belly, was the pain in his heart.
When I pulled up to pick him up from school he gave me a sideways smile. I scooped him up for a hug, I kissed his face all over and promised that I would make him the best Jack healthy bread ever.
I reminded him that some children do not have the chance to enjoy food at all. That some children have 2 foods they can eat and some have feeding tubes.
He gently nodded and wiped his tear and said, "I am sorry for them."
I told him he was lucky to go on a gluten adventure and asked him if it was worth the pain? and he said, "not really, but do you think I could go on another gluten vacation when I am 7?"
and I said, "of course! We'll plan it better then, you will eat a hamburger with a fluffy bun!"
He said, "That will be great!"
So, in 2 weeks we plan to go on a dairy vacation, in Children's hospital. I will keep you posted!

(Jack on Christmas)


Rue Davis said...

He is such a precious little guy. I'm confused though at why the doctors are pushing a food challenge so hard? When it comes to FPIES and its gray, muddy waters, the parents are the ones who know best. I say trust your intuition and don't do any challenges until you and Jacky feel ready!

Sorry, hope that's not offensive. Just my two cents from a mom with her own FPIES boy. Hang in there!


smitam said...

I just saw your video. My 21 month old daughter reacts the same way to soy though she seems to have outgrown her milk issues. Her allergy test came out all negative.

I am going to be traveling to USA in May this year and I am at my wit's end about what I will feed her. We will have no access to a kitchen and will have to rely on restaurants none of which seem to be soy allergy friendly.

I would really apprecaite some help in terms of information on brands that keep soy free food, soy free restaurants that you may have tried etc. I will need information for NYC, Boston, Washington and Orlando

if I could pelase have your email address i can contact you there...couldn't find it here

Many thanks
Smita from India

cricketpowell said...

I stumbled upon your video in youtube titled FPIES, which lead me to your blog. Thank you so much for sharing your journey!
If you don't mind, I have a few questions for you: Our 9 month old has the exact same reaction to the first (and so far only) three foods we introduced to her : sweet potatoes, peas, and carrots. 1 ER visit, 1 pediatrician visit, 2 specialists later and still no answers. While everything seems to fit FPIES, her doctor and the specialist say it couldn't be because they had only seen an FPIES reaction to rice or gluten. I adamantly refused their explanation of it being just a virus, but I can't find anyone who believes me and have no idea where to turn now. Any advice on getting better help from physicians? Did you schedule the visit where you fed him the offending food in the doctors office and he got sick? Did he ever have trouble sleeping at night? Was he breast fed/ if so was he fussy and gassy and sleepless if his mother ate gluten?