Monday, January 16, 2012

Speech has returned...

I find this to be an interesting phenomenon.

We originally started teaching Xander sign language because we felt he was frustrated with his lack of ability to effectively communicate with us. He slowly picked up words but was very hard to understand.

As he started the process of starting his formula, we noticed that he rapidly picked up words. His babbles turned into toddler sentences literally almost overnight.

Brandon and I just looked at each other with disbelief. Almost every night we would lay in bed and discuss which words he said that day. But, a part of us thought that perhaps this was a coincidence.

When Xander first started showing signs of a reaction from this past Thursday night, we noticed that his speech was one of the first things to suffer. Friday, I don't think he said more than maybe 5 words. "No!" was a popular word that day. Along with "Han-Manny" (Handy Manny.) He spent most of his day screaming and crying. He was a pitiful sight. And I began to panic a bit at the thought of him regressing so much.

Saturday and Sunday some more words returned. But it still wasn't near the language explosion that we originally experienced when he first started the formula.

But tonight? Tonight, my little talkative boy returned. He was such a chatterbox. He held conversations with us. He repeated what he heard on the tv and around him. He recited his colors. He sang songs and named letters. He asked us to identify different things.

Now, am I saying that the reaction caused him to lose speech and the other formula cured him? No! What I am saying is this: Brandon and I believe that he was in such pain and discomfort that speaking was really the last thing on his mind.

Do you feel chatty when you have an upset stomach?

No? Well, neither does he.

I have to say, this whole thing has been very frustrating and discouraging. It is very difficult to feel like you can't safely do a very basic thing for your child such as feed them. It is heartbreaking to not be able to help your child feel better. These reactions really just have to wear off and only time can help that.

I've researched and honestly, I'm not finding much encouragement for the future. It is a hard reality that I'm really struggling with and haven't quite accepted yet. NO ONE can tell me how many safe foods Xander will ultimately have. A lot of the blogs of other FPIES parents only have a handful of safe foods. Food trialing takes ALOT of patience and time. I've only found a single case where a child was diagnosed this "late" and that child was completely tube fed. It's a lonely and frustrating place to be.

But for now, this is where I am. Of course, I'm still searching and hoping for help for Xander so that he has the best chance at a sense of normalcy as possible. You should see the list of questions for the allergist on Wednesday! This mama bear isn't going out that easy. But there is a small part of me that is starting to realize that this isn't going to be an easy or quick road and maybe I'll have to accept a long term, new normal.

God give me the grace and the strength.



Debbie said...

WOW Stephanie, to think that the "normal" care and provision is causing him so much discomfort is really eye opening for me. I have never heard of this before. My first thought too with the speech and all is, He doesn't feel well enough to talk. :(
Praying for you all!

Erika said...

Steph, I can't imagine how frustrating and discouraging this must be. That is so interesting how it connects to his speech, though. I will be praying for a miracle healing that renders all of your research and worrying useless!

jennifer said...

Michael wasnt diagnosed with fpies until 2 months before his 3rd birthday.,he has no safe foods and is on neocate jr. we always knew something was wrong and have trialed 43 foods with failure. Now we know its fpies and we have come to understand he may not grow out of it. Feel free to email me at to chat. Praying for you and family through this hard diseasr