Tuesday, March 18, 2008

Doc update...

Just got off the phone with our doctor regarding results on some recent blood work:

- He thinks my son might be borderline hypoglycemic. His blood sugar level was low and he says he needs to be fed constantly and with not too much sugar. Will need to do another blood test but he thinks it’s not too serious.

- One of his liver acid levels is too high and he is sending him a milk thistle/artichoke liver health
supplement to help with that. 

- His potassium is high and he says he just does not know why and that we should retest that along with the liver in about a month. I just now remembered that he eats a banana a day. Could that be it? I e-mailed him to see what he says about that.

- I messed up and there was an urine test I was supposed to do but didn’t. I forgot it. Grrrr it was the most important one! The one for the yeast! Will do that today! Geez, it's not like I have a lot to remember right?

- He says he is developing a possible allergy to soy, so to cut that 50%. I told him it’s just 2 yogurts a day and he said to cut it to 1 or cut them both out. Great. More stuff he can't have.

- Also said to alternate the peanut butter with cashew butter and almond butter so that he can stay eating it or he can develop an allergy to that as well……lovely

- There is a crab reaction showing in his food panel IgG, since he has never had crab then it comes from ME!!!!! WOW!!! 5 ½ years later????????? Incredible! (I do love crab-urge).


- I asked him about liquid zeolite and NDF Plus I read about. He says it’s “crap” and “bunk” , that the guy that presented that at a DAN Think Tank comes from a company that sells everything “pyramid” style, that it’s super expensive and that while it's not harmful- it is not worthy of looking into. I know a mom who swears by this and says it helped her son recover. It's a tug of war of the cures I tell ya. How do we know who to believe? I know people who say that about DAN docs, but here I am believing in one. What gives? I guess you can try anything once? 

He has been increasingly curious and mischievous these past 2 weeks. He gets into everything and touches everything! It's like a delayed terrible 2s which he never had. Funny that we ASD parents praise this "Yes! He is getting into trouble-woohoo!!!" To us it's a step closer to being "normal." I use the word loosely because as we all know, "normal" is just such a biased word, an open book for interpretation.

Yes, whatever "normal" is, we want it!

Thursday, March 13, 2008

Diving in!

So we have waited all this time to dive into ABA and we are doing it!
I have decided to take the ABA plunge for the summer.

Not sure how we will pay for it but we will figure it out.
It is ridiculously expensive! So much so, we will be doing 20 hours a week versus the recommended 40.

I decided that this was the summer for the intensity of ABA therapy for him. I am sad he won't have the type of fun summer he usually has that, while therapy oriented, is still fun and with lots of kids. I figure the good this does should roll over to many many fun summers to come.

And it better be! With an estimated cost of about 10k , it better be or my husband will kill me!
And here I thought the $184.00 per week we spent for speech therapy was bad. Yikes!
Perhaps I can look into a second job for the summer too to help out.

We have to wait until May to go in for an evaluation. That way, they get the latest info on him. He will start the second week in June and go right up to when school starts again.

In addition, I got some information from a mom of a former student from his old school. His old classmate is now almost recovered! Wow! I am looking into the protocol they are using. It is a seven steps program. By just looking at it quickly, it looks like we have been doing the top five steps already with our holistic doctor. I am wondering if to add these two steps as well, but fearful of the combination of the other stuff he is already taking. I have to read some more on it. More in a new post later. She also recommended this ABA place who she swears by and that is who we will be using.

My question is, how do parents do it? How can parents get ABA services for their kids to happen? I think I want to set a goal that if I can recover my son, I will start my own foundation to help kids and will try to make it with the least amount of red tape possible.
We never did ABA exclusively because the school he went to for pre-school was all integrated with ST, OT, ABA/VB and RDI. He was getting a little bit of the techniques but not all the time.

This is very scary to us. 
Here's hoping it works!