So J has been on a GF/CF (gluten free/casein free) diet for two weeks now. I think he should have been on the CF diet from the time he was diagnosed with Milk and Soy Protein intolerance. Wikipedia says that casein "accounts for nearly 80% of proteins in cow milk" so it makes since that a child who has a milk PROTEIN intolerance needs to avoid casein as well. And if you are one to read food labels then you will know that casein is well hidden in many foods even when it claims to be "dairy free". When we found out that J had stomach ulcers and duodenitis, I decided to try the GF diet just to see if it would help him at all. I also eliminated soy from his diet b/c I still had no clue as to if he'd outgrown the MSPI or not (and his GI docs were not too helpful at all). Well after a week on the diet, J's bowel movements became normal. He was having a BM 3-4 times a week as opposed to once a week. And they were no longer doul smelling. His pediatrician agreed that I should keep him on this diet and that he probably still has not outgrown the MSPI. Also he will be tested for Celiac Disease by a new GI dr soon (sorry if I've posted this here already!) Keeping J on this diet has been really easy so far b/c he hardly eats. So basically he eats GF dry cereal in the mornings, and Jennie-o turkey dogs (no bun) with sweet potato fries for lunch and dinner. The transition from Soy to rice was easy. I started with almond milk b/c it has a better flavor than the rice and doesn't separate as easy. Once he was used to the almond milk (and our pockets started screaming!!) we started the transition to rice. I tried just giving him rice milk last weekend and he hated it, so I offered a little bit of rice milk mixed with almond milk and increased the rice milk each day. Today he started full rice milk and does not complain about it. We are also adding Beechnut infant rice cereal to his milk b/c he depends on the milk to keep him full. I really think that this new diet is doing wonders for his belly b/c he already shows interest in new foods. A few days ago, he ate a few bites of a piece of baked chicken, and today he wanted a piece of hamburger steak, but as soon as he felt the texture he spit it out (remember he has the sensory issues as well), but just the fact that he is trusting the food enough to let it into his mouth now is progress and I'm happy about that.
We are still waiting to get the appt for the Developmental Pediatrician in N.O. He is already in their system and we are just waiting for the July schedule to open so he can get an appt. I got a letter in the mail today for a local developmental pediatrician...
"We received a referral request for your child to see a Developmental Pediatrian/Behavioral Specialist. We do not accept your insurance. An office visit will cost $350, and an evaluation by a developmental pediatrician will be $100. Please contact our office if you would like to schedule an appt."
$450. My son is definitely worth the $450, but we are aware that something is wrong and he will more than likely need more than 1 of those $350+ visits. Besides, I'm sure that their wait list is just as long as the provider who accepts our insurance, so we will just go that route. I've ended up having to get a planner to keep up with all of these appts...J's therapies, GI appts, Developmental Pedi appt, and of course, my appt to the dermatologist for my alopecia which I believe has spread. I need to take a picture of the spot and compare it to the first picture I took of it, but I'm pretty sure that it's bigger b/c my hair is MUCH thinner in that area =( I've been having dreams of my hair growing back really fast. I hope the rest of my hair can hang in there until my appt on April 6.
So let me tell you a funny J story! The weather has been so nice, so we spent much of the day outdoors. This afternoon we were out playing in the backyard. J falls alot, and when he falls myself or my husband calls out "Are you okay??" so now everytime he falls he commands us to say it by saying "oh KAAAAAYYYY???" LOL!! Well today he was climbing his slide and pushing his fire truck down first and then he would follow it. Well once he lost his footing and he fell down. Well let me rephrase that...He lost his footing and slipped, but did not actually fall...inseatd he threw himself to the ground in a very dramatic fashion! I looked away, so as not to laugh at him and I hear him saying "oh KAYYY?? oh KAAAAYYY?? oh KAAAAYYY?" So I look over and he stands up, walks from behind the slide so that he can see me, and then dramatically falls down again!!! "oh KAAAYYY?" So I say, "J are you okay?" J says "Than Du!!" Oh Lord!!!! He's so funny! I love him =)