Anonymous wrote:Has anyone received a diagnosis through NIH and then not get called back for the follow-up study? Our son recd. a diagnosis about 3 years ago, we went back in for the brain MRI, and then they never called us back in. He is pretty text book ADHD, no other co-morbid conditions.

Why not just call Wendy and ask? We didn't get paid until we asked.

Has anyone received a diagnosis through NIH and then not get called back for the follow-up study? Our son recd. a diagnosis about 3 years ago, we went back in for the brain MRI, and then they never called us back in. He is pretty text book ADHD, no other co-morbid conditions.

We had a wonderful experience with them, we go back every year, and it was instrumental to my son getting an IEP.

We had a wonderful experience with them, we go back every year, and it was instrumental to my son getting an IEP.

Anonymous wrote:Two questions--1) do you have to have an actual addhd diagnosis to enroll in the study or do they do the assessment ? And 2) What's the contact info for enrolling?Thanks!

They do the assessment, and it was sooooo helpful seeing them!

They will ask you many questions when you call and I am trying to remember if they mail you a questionnaire as well... But I can't remember for sure.
Based on your answers they will let you know if your child qualifies for an assessment.
No, you do not need a diagnosis, but they will you one or a second opinion.
The person to contact us Wendy Sharp
sharpw@mail.nih.gov
Good luck!

Two questions--1) do you have to have an actual addhd diagnosis to enroll in the study or do they do the assessment ? And 2) What's the contact info for enrolling?Thanks!

We, too, had a great experience with the ADHD study. We've been doing it about 5 years (DS is in 5th grade and I think we started when he was in K). Once accepted into the study, we were given every opportunity to opt out of the MRI. They understand not every one can tolerate it. It is an important part of the study so we chose to encourage DS to do it. Amazingly, he did an awesome job. He wanted headphones instead of ear plugs and that request was quickly accommodated. He always enjoys seeing the images of his brain afterwards.

I also echo what the PPs have said about the testing, feedback and what a great resource the research team has been. Initally, DS wasn't on medication. The staff have never pushed/suggested medication. I had some very helpful conversations regarding medication and have really appreciated being able to have them. They're experts in the field and it's nice to have them as a resource. The reports have also been great. They've been very helpful in interpreting test results (ie just because my DS scores about the same as an oraguntan does on intelligence tests doesn't mean he's got an intellectual disability) and recommending accommodations/strategies. It's not so much for me but for our IEP meetings. It's nothing too specific but it doesn't help provide examples of what could help him.

Anonymous wrote:Oh and we did the tests last year on meds. We have our annual appointment scheduled for this year and no one has said we need to be off the meds that day (guess I should ask).

New poster here. We just went back for our annual visit, and they said to proceed with meds as usual that day.

Oh and we did the tests last year on meds. We have our annual appointment scheduled for this year and no one has said we need to be off the meds that day (guess I should ask).

Both my kids are in the study and our experience has been similar to the Pp -first appointment took all day, report came maybe two weeks later. The feedback I received from the doctor running the study was great, and he really helped me understand what was going on and he seems to be a truly caring person. Last year only one of my kids could do the MRI machine and it wasn't a big deal.

When we started the process my older child already had an IEP, but I used the report from NIH as a major support for my second child to qualify for an IEP with no problem.

Thank you PPs! Will call them to see if our son qualifies. He's not on meds (yet) but it's good to know that this could be an issue either for being included initially or for subsequent visits if they want him to come back.

My son has been part of the study for 5 years now. We go back every year for follow-up.
If I remember correctly, the first appt once you are accepted, takes almost all day. They will do a gazillion tests on your child and interview the parents in great detail. I think we also had a blood test for DNA and our kid opted for a saliva DNA test. The MRI is a pretty important part of what they are studying so I am not sure you can opt out, but I might be wrong.
They will also give you a bunch of questionnaires for all your kid's teachers to fill.
At the end of the day you meet with the team and they give you their assessment and talk to you about next steps, resources, school accommodations, etc.
I honestly can't remember how long it took to get the written report, maybe 2 weeks.
For us it has been a phenomenal experience. The whole team is extremely knowledgeable and they are great with kids and nervous parents. They are also very good with phone calls and answering any question you have at any given time. They do not prescribe meds and do not push for them. They just give you options.
We did decide to start meds after their final diagnosis and it has been life changing for our son.
He is now 13 and loves going back every year.
Ohhh and regarding what the PP said, they do ask us to not take his pill on the day he is tested but that is it.

The only feedback I have is that most studies will not accept your child if he is on medication. They will consider it if you are willing him to pull him off meds during the study.

wish I had more to add.

Considering this for our son, who is 7. Can anyone tell us what is involved and how long it takes to get the feedback? Verbal versus written feedback we can use to push for an IEP/504 plan if it turns out they recommend one? Is the MRI mandatory or can we opt out of it?

Our son already has an ADHD diagnosis from a developmental pediatrician out of state but, quite frankly, this pediatrician wasn't very good at making any recommendations about how we could help our son in school.