New parent with AS..have questions

Post Reply New Topic

My 12yoa son was probably diagnosed a couple of years ago with AS but the family Dr. wouldn't put it on "official paper" that he has AS although he's a classic case of AS. We live in a small town with a very small school that knows nothing about AS, I also being new at this, but in order for them to accomadate him in school, they want it on paper. What specialist would I go to that will put it on paper since our small town doctor won't? What is the proper Dr. that will asssist him in his needs? The only meds he's on is Strattera for his ADD but his Tic's get worse in the afternoons and the teachers don't understand his needs. They don't understand why he can't tie his shoes. It's getting frustrating.

Any suggestions or ideas? Please help.

If you are in the US and the school is so insistant, then maybe you should remind them that they could always pay for the testing to be done themselves (I think it is federal law that the school must test a child if the parent requests it and most times, have a time limit in which to do it).

Since it is summer right now, I would wait until the beginning of the school year when the "experts" will be on the job.

Ok Staterra gives tics.. it was one side effect that we found.. it stopped when we took him off this.. case studies have found that boys do not respond as well to stratera that girls. i would seek another med.. as for the Dr... that dr is horrible that they will not aid you in this.. but if this is your Peditrician they will not make this diagnosis. a psycholigist must do this thru several test. yes the school can do this.. but I am not sure they even will make that diagnosis.. Our school would never make this judgement. they test the child for their weak areas that they need to be stronger in. but that is about it. i would never trust them to make this diagnosis.. maybe because our school psychologist does not believe my son has AS... its time to EDUCATE your school and your town on AS.. time for them to get a clue and start doing what they need to do.. Its time to wake up and smell the coffee.. and you need to seek another Dr if this one does not meet your sons needs..

Keep in mind, most insurances specifically list AS and Autism as things they won't pay for. Once you get a diagnosis on paper, your all done with insurance so make sure you really need it.

06xrs hit on something I came across. When applying for medicaid for his meds, they said they would not cover him with the diagnosis of AS. It was on one of their list as a pshycological disability than medical and they wouldn't cover it. But since he had seizure disorder when younger, he no longer has seizures, if that was on the books, they would cover him and pay for his ADHD meds. Since AS is so new to them in the last 15 years, they won't reconize it. Thats why I'm hesitant to get it on paper. But as for the school, they're actually working with me. They just would like to see something on paper. Our local family doctor doesn't like to label kids so he doesn't put it on paper. Small town. No ped. doctors for over 100 miles. I don't know if I'm better off leaving it at is or not. What services are out there for him if he is labeled AS?

I don't know what would happen if we took him off the Strattera. We can live with the tics. He was on Adderall for years but it stopped his growth for 4 years! He's 12 and only weighs 52 lbs. but he is healthy. He was only 16 lbs when he was a year old so we knew he would be small. He's now just growning into his head. But off his Strattera and he's uncontrolable.

So I guess the question now is, what help is there out there for him in school without it being on paper. It sometimes makes us feel that if its not on paper, we made it up.

I have never heard of the insurance not covering you. I have heard about the 1 year waiting period for pre-existing conditions but not total denial/cancellation. Then again, MN has a risk pool setup for health insurance where the company that denies you today may end up insuring you tomorrow with no restictions (although a higher preminum/deductable but not too much higher, especially if an employer is willing to pay it).

As far as the school thing, I would ask his teacher what they would offer that is different than what they do offer now. I have a feeling that he would be on an IEP for ADHD anyways and depending on the who savy the parent is, would get the services they need without the label.

The choice is up to you

My works insurance covers his medical needs. But when my husband lost his job for awhile, we went to medicaid to help for his prescriptions. Even with the co pay, it was costly a month. It was the state that wouldn't help him. He's had an IEP since pre school. The schools have been great for it, but your right, it was for the OCD and ADHD not AS. Most school here in NM don't have a clue about it. They're getting better though. But there's still not many services out there for him for most of his behaviors such as the OCD. Now that he's going into the 6th grade, he'll be changing classes which is a night mare for kids with OCD. So thats something we have to look foward too...NOT. In his new school, he's the only one in special ed and the only one in our county that the school systems have heard with AS.

don't you think the system needs to change.. how can people be deneid their services for mental health? and we pay millions of dollars for care fpr people who smoke and abuse themselves.. I am in that boat with my husband.. our insurance for him that WE pay for out of pocket will not cover his anxiety meds.. we had to apply to the company who makes the meds to get free ones.. things need to change...