Monday, March 03, 2008

Feeding Therapy vent

I'm going to vent for a minute. And if I can't vent on my own blog, then where can I? :P

I absolutely love Jayce's feeding/speech therapist. Well, at any rate, she has gotten Jayce to do so many things with his mouth and food that I'm just in awe. She's not working so much on his speech, which I kinda understand, its more imperative that he eats right now. Its not like he is completely non-verbal. Quite the opposite, he can string two and three words together now to make coherent phrases about his wants. His conversational language is still almost nill (he can't answer questions or tell you something other than a quick observation or immediate need of his), but he has made progress with his speech.

Oh, sorry, this was a vent about feeding.

So, the problem I have is not with his therapist, its with his nutritionist. She's actually a medical doctor that specializes in nutrition for special needs kids. It took me 3 months to get an appointment with her. She's thorough, I'll give you that! I guess what my problem is with all of this is her "solutions" to get Jayce to eat more.

First of all, I noticed a HUGE difference in his speech, sensory issues, and bowel movements when we did our 12 week trial run with going Gluten Free. It was enough to convince me that Jayce needs to be completely gluten free. If not for life, definitely for this critical time period. And most kids that can't tolerate gluten well also need to be dairy free. Now, we've done a trial run of dairy free back when Jayce's screaming started and it didn't help, but now that I've read tons of books on GFCF stuff, I realize how those two proteins can work together in the brain to muddle signals.

So, we had Jayce tested for celiac disease. Negative. Or, should I say, negative blood test. However, there is a catch. The blood test will not show up positive until there has been damage to the celia of the intestines. It could be possible that Jayce may have an allergy to gluten, but he's not old enough to have significant damage to his intestines. OR, it could be possible that we did not introduce gluten back into his diet soon enough for the test. Whatever the reason, she has dismissed the chance of him being celiac whatsoever. Even though he has some of the classic celiac symptoms AND the fact that wheat allergies run in my family.

I got her to agree that we need to go GFCF, but she wants me to wait. Um, why? Why on earth would it possibly be beneficial for me to wait to remove gluten from his diet if there is such a monumental difference?

Her answer is simple. He meets more of his nutritional needs with his current diet. Honestly, I find that hard to believe. His diet consists of ice cream, cocoa pebbles cereal, white powdered donuts, rice krispy treats, pretzels, and cheese crackers. Yeah, not exactly the balanced diet you would hope your children have. Oh, and I forgot pancakes. He still occasionally likes pancakes.

So, this doctor is so worried about Jayce's nutritional levels (although he did not have any deficiencies when tested), that she also wants me to put him on Soy Formula. Um, no way, no how. Number one, I'm not that desperate. Its not like my child is skin and bones. I'd rather keep working on getting nutritious food into him rather than hand him a sippy cup full of a milk substitute as his "dinner". Number two, its formula. Those words are equal to toxic waste in my home. I breastfed him for 27 months because I believe human milk is far superior to manufactured infant milk and you want me to give him formula at almost age 3? Number 3, why would I make my child eat/drink something that I wouldn't even put in my mouth? Formula tastes like rotten broccoli. If he won't even drink yummy cow's milk (or rice milk or almond milk) then what makes me think I can get him to touch formula? Number 4... SOY. Yeah, that controversial soy bean plant that is manufactured and produced into all sorts of non-natural items. And chalk full of estrogen. And linked to many health and behavioral issues. Yeah, I'm good if Jayce never has any soy in any form, thankyouverymuch. Also, 50% of kids with dairy allergy have a soy allergy as well.

We've had two appointments with our nutritionist. The nice thing about the appointments is that we leave with a sheet of paper with ideas on new foods to try. Some of the suggestions have included other types of dry cereal, different flavors of pudding, different shapes and textures of crackers, different shaped pretzels, etc. Um, yeah. How the hell is that going to help my kid become GFCF?

In speech/feeding therapy, the same types of food has been used. Several types of dry cereal, mac n' cheese, pasta dinner, oatmeal, different flavors of pudding, etc.

Frustrated, (and inspired by a fellow mom on APU to be assertive) I cornered his speech therapist and said, "Exactly, what is your goal?"

"To get Jayce to try a variety of foods," she answered.

I said, "Does it matter what kinds of foods?"

"Nope, just a variety."

"Okay, good. Here's what I want Jayce to eat: fruits, vegetables, and protein. No more snacks that contain gluten and dairy. I need him to be eating the stuff that his diet has been lacking for the past 18 months. I could care less if he eats oatmeal! We never even cook the stuff in our house!"

Her answer, "Sure!? Whatever is fine by me. Just bring in the food you want to work with."

Today we did applesauce and strawberries. At first he freaked out about the strawberries, but by the end of the session, he was putting the tool with smashed strawberries to his tongue. That is HUGE progress.

And I feel so much better :)

3 comments:

  1. This post brought happy tears to my eyes.

    Smile when you say no. ;)

    ReplyDelete
  2. I am proud of you and your confidence of knowing what is right for your child. Nobody knows your child like you do.
    What does GFCF mean?

    ReplyDelete

Thanks for commenting!