We are struggling to find the right medical support for our 8 year old daughter. She had the full neuropsych eval but the psychiatrist who did that only does the testing.
Our pediatrician is trying to manage the medication but I think we need a professional who specializes in ADHD and can help us refine the medication/dosage. Since we're new, we don't really know what to expect, but don't think the current approach is working. We tried to make appointments with local developmental peds but the waiting list is TWELVE months for new patients.
We don't even know where to start with a therapist/psychologist/psychiatrist. Previously she saw one therapist and that wasn't a particularly positive experience, so now she thinks something is wrong with her. We want to proceed very carefully and not "experiment" on her!
All advice and suggestions much appreciated. We're in the NOVA area outside DC in case that helps, though I don't know with the rise of telehealth if that would open up more options?
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Hi. Try Children's National in DC. Go to Dept of neurology on website. There are subspecialists there and among them are specialists in the field of ADHD. I have always taken my son to pediatric neurology to manage the ADHD meds and have been happy with the approach. Most ADHD children need medication and the pediatric neurology folks are the most experienced in that area. Some need counseling, but my son does not. We have tried a couple of times and psych folks have consistently said said he doesn't need them. If your child needs counseling, the folks at Children's National can set that up, too. I am not sure about wait time, but some pediatric neurologists I know have actually been slow since parents are afraid to bring their kids in due to covjd. Between that and schools starting back up, now may be the PERFECT time! Good luck and be well!
Thank you! I called them yesterday and left a message so fingers crossed. I called another place recommended to me and their wait time was 12 months (!!) for an initial consultation... and then I got an auto reply email saying they stopped taking new patients altogether. Fingers crossed I can get further with CN. I'm glad that has been a good option for you!
I also appreciate that they can connect with therapists. I do think my daughter would really benefit from therapy but it has to be the right person. Prior to the ADHD diagnosis, we had seen one therapist, and it really wasn't the right fit...
We are in the DC area. I like Children's National (CN) and Kennedy Krieger (KK), both have strong ADHD practices . Unknowingly, I probably did it a bit backwards, getting the neurophysiological exam first and then obtained the developmental pediatrician . I applied to both programs at the same time, willing to take which ever one was available first. I was able to secure a recently graduated CN neuropsychologist, who interned with KK but was not yet approved by the insurance companies to be covered under medical insurance plans ( I believe the term is "unpanelled".) I agreed to pay out of pocket and was able to get an appointment within two months. The appointment ended up going through insurance anyway. A few months later, I received a call back from KK.
Once in s program, there are a lot resources available. We decided to continue with KK and have a developmental pediatrician, behavioral psychologist, etc. We still have to schedule way in advance for a neuropsychological follow-up. The benefit of staying within one practice is they can make quick referrals and share all their information. Securing the diagnosis was key to getting services; IEP with the Board of Ed, behavioral supports, Early Start programs, medication, etc. Good luck.
Thank you this is very helpful. I called CN yesterday so will see if I can get a foot in the door there. (I tried one other place that isn't accepting new patients.) I heard about KK from another parent but from their website I couldn't tell if ADHD was part of their practice area, so it's good to know that they do this well. I will call them as well and see what they say. I'm amazed at the wait times for services.
But from what you have said it sounds like getting into one of these is really the key to next steps. We took the path that you did, getting the diagnosis before everything else. I didn't know where to start but am trying to figure it out as I go! I'll look into both of these practices and see if I can make some progress... thanks very much for this advice.
There are plenty of pediatricians out there who are knowledgeable about ADHD meds and can help you - I had an evaluation done by a PhD, and my pediatrician worked with us to find the right meds. There are also developmental pediatricians who I believe know a lot about ADHD and can help.
Thank you! I'm glad to hear that it has worked well for you. Our pediatrician is trying, but it feels like trial and error with blunt instruments, and I'm not satisfied with the conversations that we're having in terms of what we're trying and what to expect. Honestly my daughter does better without the medication than she does on what the ped has prescribed, and I'm not clear if that means she doesn't need meds (though the neuropsych who did the eval recommended she get an rx) or if means she's not on the right ones. For now I'm hoping to find a developmental pediatrician (who can actually see my daughter sometime this academic year!) to see if that's a more nuanced conversation. At the moment, my daughter feels like she's being experimented on, so I'm also very attentive to how all of this is falling on her. The last thing I want to do is erode her confidence because we're all clueless!
you sound like you have a very good handle on this. I think you should continue looking for a developmental pediatrician and listen to your gut. You really seem to have a handle on the process and what's best for your daughter. It's never good to just go along with whatever the professionals say. I have found that most professionals really aren't very experienced with ADHD. It's a journey- Just when I think we're good, something else pops up! I just try to really focus on my kid's blessings instead of on his struggles with ADHD. Good luck to you! I have a strong feeling you will figure this out because I think you're doing all the right things.
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We want to proceed very carefully and not "experiment" on her!
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