Today we went for Austin’s second appointment with the autism doctor. It was originally scheduled for last week, but we had to reschedule after a horrible stomach virus made the rounds at our house and I was in bed the day we were originally supposed to go.
We got the results from all the lab work that we had done back in February. My one hope was that we wouldn’t have to do the gluten/casein free diet, but that didn’t work out like I’d hoped. He is slightly allergic to gluten, but the reason the dr. is completely taking it out of his diet is because of the way his body breaks it down. He is also allergic to peanuts…not in a life threatening way, but enough of an allergy that it’s not good for him to consume…and egg whites.
So he cannot have any breads, crackers, pastas unless they’re gluten free, no dairy, no peanut butter, no foods at all with egg in it unless it’s only the yolk (I’m sure there are so many things with only YOLK in it of course 🙂
He is also hypoglycemic which explains why he pulls me to the kitchen for a snack every 25 min all day long. And because a liver enzyme was elevated, the dr. is not going to start him on the med he normally would for yeast. His yeast levels are not too high, but the dr. wants to treat it, so he is substituting the med he would normally prescribe with oral nystatin and tumeric.
As far as Austin’s progress, the doctor is happy with the things we report of course, but his main focus at this point with Austin is getting speech going. And currently we are at 0 for any words. The doctor said speech apraxia is one of the most frustrating and difficult conditions, especially in autistic children.
I feel this frustration every single day. The frustration that he is so aware, and so intelligent that he finds ways to show me exactly what he wants, but he cannot TELL me what he wants. He has even tried imitating the speech therapist’s mouth when she’s saying an animal sound to him, but no sounds comes out of his mouth!
The silver lining in the situation with speech is that Austin is still so young…only 2 1/2. With all that we are doing for him now I try to stay positive that we are going to see huge improvements in the coming months.
The next step in the protocol for stimulating speech in Austin is b12 shots. I was terrified of doing this before I went for the appointment, but once I saw how tiny the needle is, and how simple the process, I’m not too worried about that now.
I am, as I knew I would be after this appointment, feeling more overwhelmed than usual. Lack of sleep certainly isn’t helping that and I can’t remember the last time I got a full night’s sleep. The last 2 weeks have been spent dealing with sickness, then a Disney trip which meant no rest at all (but lots of fun!)
Last night I got to bed early only to be awakened at 4:30 am by the living room TV blaring. I got up expecting to see Mike (who works midnight shifts and sometimes stops by during the night); instead I found Austin rocking away listening to country music. He got out of his room, and somehow knew how to turn the TV on by himself. He was not too happy with me when I put him back in bed, and I never did fall back to sleep.
Well, it’s Friday. Here’s to the weekend, and hopefully an uneventful and “normal” week next week! And maybe, just maybe, some much needed sleep….I won’t count on that though 😉