yet another ASD medication question...

[debbi801]

So, we've found a new pediatric psychiatrist who we really like. He seems to truly understand the issues involved with ASD and explained a lot to DH and I in terms that we could understand. We left there with a far greater understanding of what goes in in DS's mind, where the anxiety comes in, where the stimming behavior comes from, etc. He drew lots of pictures of the different parts of the brain, explaining what area controls what behavior, diagramming why the ADHD meds not only didn't work for DS, but made things worse, and so forth. He spent 2 hours with us Friday: getting medical history, asking questions about DS that never occurred to us before (did he self soothe to sleep, any early nightmares--DS has had nightmares from the time he was an infant), observing DS's interaction with us, how he played, what he chose to play with etc. Then, he spent a while with just DS talking to him about school, what makes him happy, sad, worried, etc. What makes him go into his fantasy world. Various questions.

Then, he met with us again for an hour yesterday explaining his thoughts, what he and DS talked about, what he thought the biggest issues were. He feels that there are 2 areas that need to be worked on with DS, but he does not want to tackle them both at the same time with a variety of meds. He only would want to try one med and see what that does before deciding anything further. He feels that the biggest issues are DS's anxiety and DS's perseverative (and stimming) behaviors.

He recommended trying either doxepin or nortriptyline for the anxiety. Or, trying Amantadine for the perseverative behaviors. He said that the older meds seem to work better than the newer meds with kids like DS.

Anyone had experience with these meds (good or bad)?

Thanks if you read through to the end.

 

[bookwormde]

I have no first hand experience, but as you have probably seen by my posts before did he make sure that everything was being done to support your child’s environment, both physical and social. My son’s anxiety and stims almost disappeared as soon as got a good para at school. They do reemerge at times of new challenges but are not damaging enough to even give the first consideration to medications.

Remember medications are the last resort. And please get a copy of the PDR and actually read the full page on the medications before moving forward. Medicines cure nothing in our children, and while if manifestation are so severe that they are to a clinical level and are making skill acquisition impossible then they are an appropriate short term option but otherwise they just make all the adults feel better with, no long term benefit to the child.

When I first started reading your post I though that finally someone had found a psychiatrist who actually understood autism spectrum individuals but as soon as I saw that his primary approach was medicinal I knew my first thoughts were wrong.

bookwormde

 

[debbi801]

I still think I found him. He isn't pushing meds other than as a temporary measure if we want them. These were his recommendations for if we wanted to go the med route.

We've got DS in OT and social skills on our own dime while we fight for more services at the school. He's failing miserably at school right now--he hates it, he is fearful and overwhelmed. And this is with a well qualified, well experienced para-pro. The school is trying to get the board of education to agree that this school is not right for him and to get him into a specialized public school made specifically for high functioning kids on the spectrum. The board of education is dragging their feet. I have an emergency IEP meeting Thursday a.m. to move him from a mainstream class to a special ed class within his current school. Once that happens, the board of education has agreed to come out and observe him which is the final step before getting the recommendation to move him to the other school. At the new school, he'd get ABA, OT, social skills, etc. therapies. Right now, he is only getting an hour worth of therapy at school/week.

Believe me, DH and I aren't thrilled with the meds route, either is his psychologist or this new psychiatrist. But, other than pulling him out of school and home schooling (which we can't afford to do), we need to find a temporary measure to help him with the amount of anxiety he has right now--he's trying to run away from school, screaming, crying, the stimming is going through the roof, his nightmares are terrible, he's not eating, etc.

So, I am trying to find out if anyone here has first hand experience with these meds. I've read everything I can find online about them. I'm just looking for first hand info.

 

[bookwormde]

It sounds like you are headed in the right direction. It is not uncommon to need a short time (a year or so) in a special setting to get the anxiety down and to get all the supports and accommodations in place and making progress. We did private OT and Speech (for non logical language structures) also.

One good thing is that once you have the full battery of supports and accommodations in the specialized school, once he is ready to move back to the general education setting you can just invoke LRE and they have to provide the same level of services in that setting (this often takes a bit of a battle).

I sure other people will confirm this but it is truly amazing how fast the anxiety levels drop once the proper environmental adjustments and supports are in place.

bookwormde