Advice appreciated | ADHD Information

Hello Everyone,

I'm new to the forum but hoping that someone out there has some words of wisdom for me!

My son, 8.5 years old, was adopted from Russia at almost 4 years old. We noticed the inattentiveness and hyperactivity almost immediately. Based on input from us, preschool teachers, and the kindergarten teacher, Evan was officially diagnosed by our pediatrician with ADHD at 5 years old. At 7, we took him to Duke University for a very intense evaluation. The doctor there described him as a "poster child for ADHD" (a 9 on a scale of 1 - 9) and said that his symptoms were "very significant." He was also diagnosed with generalized anxiety (chews his nails like crazy, picks at his skin, etc.)

Evan started with Metadate CD (eventually up to 30 mg). We had some rebound, but it basically seemed to work for about 8 months, then suddenly stopped working, almost as though a switch had been turned off. We tried Vyvanse (working up to 70 mg) and were really pleased with the results during the day, but we had AWFUL rebound in the late afternoon - crying, angry outbursts, etc. It too seemed to stop working after about 10 months. He also took a small amount of Tenex while on the Metadate and Vyvanse, but we didn't really see a difference with the Tenex. We are now on Adderall (40 mg) and have been taking it for about 6 months. It seems to help the hyperactivity and the rebound isn't bad, but focusing is still a pretty big issue. Now, once again, I am seeing signs that it's effectiveness is decreasing rapidly, and his dosage is so high that it can't be increased. Our psychiatrist has said that he will talk to us about trying Concerta at our next appt, and I'm thinking that I'd like to try Tenex again. My question is this: Is it normal for a medication to just stop working? Does that mean that we are always going to be jumping from one med to another??

We have also had a very difficult time finding doctors to work with (part of that has to do with the fact that our insurance severely limits the doctor "pool" we can use). Our ped is great, but he only feels comfortable using meds designed for ADHD and won't prescribe Tenex or any meds designed for other uses. Our first 2 psychiatrists weren't much on discussing the issues. They just wanted to write a prescription and have us in and out in 10 minutes. Our current one is not much better. The first psychologist was good, but moved to another city. We don't seem to be getting anywhere with the second one. We basically discuss the same things at every visit and I'm not sure that's worth my money. Is there a trick to finding someone who truly wants to know what is going on and wants to help your child?

Thanks for taking the time to read all my babble. I'm just really frustrated and want so badly to find what works for my son! 

Resa

Resa,
I feel your pain and frustration.  I don't post much on here but I get a lot of great input and information.  My son is 10 years old and was diagnosed when he was 7.  We have gone through 3 psychiatrists and it always seems as though they don't want to take the time to help they just want to write the script which my family doctor can do the same thing.  His last one, in fact, I just tried calling today because his family doctor is getting nervous (I feel) because of trying different medicines.  The family doctor suggested that I make an appointment with the psychiatrist to check in with the med issue.  My son has had a problem, just like from what I see online that most people have, with his appetite.  Last year he lost 8% of his body weight and has constant belly aches.  He was on adderall xr the longest but finally I said enough is a enough lets try other meds.  He has tried now focalin xr (awful crazy side effect), vyvanse (belly ache worse than adderall) and today we picked up a script for now Concerta.  We will see.  So any way I called the psychiatrist and since he wasn't seen for a year (almost exactly) they say he would have to be considered a new patient and they aren't accepting new patients.  July 28 was exactly one year since his last appointment.  The receptionist said I will call the doctor and see if we can get an exception and call you back.  Of course I did not get a return phone call.  So then I called probably 10 other places under my insurance, NO ONE is accepting new patients!

As far as your question goes in regards to medicine just all of a sudden it stops working.  I have read about others saying that as well.  Almost as though a resistance is built up.  However my son has not experienced that as of yet.  One thing I do now is every person with ADHD is different and one medicine may work for one person and not for another.
Hang in there and don't give up!  Keep being an advocate for your child no one else will be!
Marcie