How to find a good specialist for ADHD combined type?

[SuperCupcake64]

Hello! My (now nearly 21-year-old) son has been on a major journey with diagnosis, accompanied by me as his guide and fierce advocate. He was first diagnosed around 3rd or 4th grade with nonverbal learning disorder with Asperger's tendencies. He has battled mood dysregulation, dysgraphia, major depression and more and has taken various medications over the years. He was assessed again prior to high school and again it was suggested that he is on the spectrum. But none of this ever quite fit. He was always the most social in social groups with other kids on the spectrum and did very well in school. While he benefited greatly from executive functioning coaching, he quickly showed he did not need special ed classes and graduated from his IEP at the end of sophomore year. He did well enough to get into a highly selective college. Once he got into college, things became very different. He struggled socially and while he still did well academically, reported that getting his work done was painful and many days nearly impossible. He felt different and his self-esteem took a major hit. After meeting many other peers with ADHD, he did his own research and everything started to click. The professional with whom we have worked for over ten years said she had suspected ADHD (I wish someone had mentioned it!) and together they agreed to try stimulant drugs along with his existing set of depression meds. They have helped, but it's not perfect. At this point, he and I both feel that he might benefit from meeting with someone with a deep understanding of ADHD inattentive/combined type in young adults and a complete reassessment of meds. I have no idea where to find such a specialist, however. I'm willing to travel anywhere. What's the best way to identify the right person for a second opinion? TIA for any advice.

[Anabelle22]

Hi I don’t have any idea where to find a specialist as I am in the Uk and the system is different.

My daughter is 14 yo. She autistic and has combined adhd (inattentive and hyperactive). She has started on Xaggitin XL (same as concerta) which seems to be helping with her focus and generally coping.

We got her meds prescribed by her psychiatrist who oversees her mental health and diagnosis

Your story sounds familiar. It’s really hard for our kids - ASD and adhd - inattentive and hyperactive

What executive function training did your son benefit from and who delivered this?

Best to you both.

[SuperCupcake64 in reply to Anabelle22]

Thank you so much. I'm glad the med your daughter is taking is helpful. My son wonders regularly if he has ASD, especially with the ADHD diagnosis. My guess is yes, and it is all very hard.

Because my son was thought to be on the autism spectrum, when he started high school he had to take a study hall called "academic strategies" that was all executive functioning: how to get organized, how to prioritize, how to study, etc. Every day a teacher made sure he was organized and offered help when necessary. Once he "graduated" from special services he was no longer eligible. Honestly, I'd love it if he had that kind of oversight in college even for a few weeks.

He's been seeing the same psychiatric provider since he was young and it troubles me that she only just now is saying she wondered about ADHD. At first, the focus was on mood dysregulation and major depression. Prozac was activating, but Zoloft was better. Then Lamictal was added to combat emotional outbursts. He couldn't sleep, so off-label Seroquel was added. Freshman year of high school he had another depressive episode, and that's when he started taking Lithium (but stopped Lamictal). Sophomore year of college was the "aha (I always suspected)" ADHD moment, so he's tried Vyvanse, Adderall XR, and Adderall IR. It seemed as though Vyvanse triggered some sort of manic episode over the summer; Adderall works better, but he's currently in Europe studying in a country where Adderall is illegal, so back to Vyvanse. So he takes Zoloft, lithium, Seroquel, Vyvanse, and when necessary IR Ritalin. It's a lot of stuff.

With the "new" diagnosis, it just feels like an opportunity for a fresh set of eyes and someone who really specializes in ADHD in a meaningful way and could recommend other therapies in conjunction with medication. He has had so much therapy and while I'm very pro-therapy, my gut tells me that rather than talking about being depressed, it might be better to attack the source of the depression and find out if there's anything left to discuss, if that makes sense.

Thank you so much for responding to me.

[Anabelle22 in reply to SuperCupcake64]

I’m so sorry 3 months has passed since our last chat. It’s been a busy 3 months!!

How is your son ?

My daughter would really benefit from Academic Strategies. Her school doesn’t offer this. I don’t know how I am going to get her organised !! I have adhd myself (on NHS wait list in Scotland and so awaiting diagnosis ) so it’s not easy when so much of my own life is a struggle to organise!!

It’s something I could look into privately as getting organised and being able to prepare and plan is a vital skill.

Maybe it could be provided by someone in the states !!!

I’ll check my messages for your reply!!!

[El-Eektrified]

I was diagnosed with ADHD 2 years ago, and tried multiple meds. First ritalin, then dexamphetamine, but I was increasing the last one, without informing my doc… because I didn’t notice any effects… obviously they were there, but I couldn’t grasp it. Eventually I took 50mg dex IR daily, and it wasn’t able to lift my mood and got me severely depressed, because I was tired most of the time. So my doc made me quit right away…

Bupropion, an antidepressant was next. It didn’t do much, and didn’t had negative side-effects either, but my hyperactivity was still an issue… so they added Intuniv which really was the best medicine that I got to try.

It made me feel at peace, stabilized my mood, ability to sleep.

bupropion increased my blood pressure, and Intuniv decreases it… which got me stuck… if I forgot to take bupropion, I would be dizzy, tired and feeling awful.

But the combination worked for a while.. but my body started shivering, when I was stressed… didn’t know what was happening… I couldn’t ‘feel’ anything, my emotions were gone… actual things got more difficult.

I got back into treatment, another diagnosis related to trauma/depression, but my psychologist told me to check out my meds… I did, and decided to quit bupropion… I got my feelings back, and I’m no longer suffering from my body shaking at times when it’s inappropriate…

I did had to get through a period of tiredness, blood pressure drops because of the Intuniv. I explained everything to my doctor and he prescribed vyvanse , he also pointed out my past abuse with dexamphetamine, so he was very cautious and I was under strict weekly control. He also prescribed me 5 days, and had to take a weekend break. Now I’m back at 7 days vyvanse and Intuniv, which is a great combo for me.

Therapy only took 8 sessions, instead of the proposed 30… Most difficulties were related to the antidepressant, which made it impossible to ‘feel’. I need ‘emotions’ to understand my world, bupropion actually made my psychological-state worse, so the only advice I can think off… quit all antidepressants and try ADHD meds first!

[SuperCupcake64 in reply to El-Eektrified]

Thank you so much for this. He did try going off Zoloft over the summer and his anxiety skyrocketed, so he is currently back on it. Hearing the variety of reactions people have to these drugs is so helpful. I'll check out Intuniv--I have never heard of it. The approach to his meds has just been so piecemeal: "You have emotional outburst, take lamictal. You're depressed--here's some Zoloft. You can't sleep--try Seroquel. Or trazodone. or Clonadine. You are really, really depressed--let's add lithium. You have ADHD--time for stimulants." You get the picture.

[El-Eektrified in reply to SuperCupcake64]

I do! Think it’s a way psychiatrist are trained, they love meds and create wonderful combinations… I always ask myself, if they would prescribe the same meds, for their own children? Tapering off takes time, and it’s not easy…

I’m an adult and still have the ability to blame those meds… because I know, how I (dis)functioned before. How about children that were medicated since they were 5 years old? Will they still know, what life is like without meds?

My psych also hasn’t ADHD, and was like..

I think you are depressed, bupropion works for depression and ADHD symptoms. My hyperactivity and sleep issues remained, I could get Intuniv or Clonidine which are somewhat similar… but it also has a range of side-effects - they’ll then counter it with something else…

Many anti-depressants are addictive in a way, my doctor told me it’s easy to stop bupropion (I was on 450mg) but it wasn’t. My symptoms seemed to get worse, so decided to get back on it. Until I found out, through another patient who took fluoxetine, that it would take at least 2 weeks to get through the worse symptoms. He was right, after a few weeks I did feel better!

I didn’t tell my doc, because I felt the need to ‘show’ and explain that I wasn’t depressed… ever since I was diagnosed with ADHD and became a ‘psychiatric patient’ they seem to know what’s ‘best’ for me.

Meds can work, but I’m more reluctant to trial new meds, since my experiences of trial and error and feeling like a Guinea pig.

I believe in psychology, psychotherapy. Most psychologists that I have met, usually aren’t that into medication.

They believe in the art of therapy. Learning about behavior, social structures and discovering “why” you are afraid, what causes anxiety… Its a different approach than a pill… but its a great form of art and can help a lot of children ‘change’ in a natural way. They’ll give them a toolbox filled with the golden circle’s ‘why, how, what’ approach. Useful in all sorts of situations. They’ll learn kids to listen to their emotions and eventually will be able to achieve bigger things in life, pills will never come close to.

Mental health deserves a spot within school systems, not speaking of disorders that require pills or put children in a box, marked as different, make them feel different and eventually act upon it and give up… kids with ADHD have talents, different talents… therefore teachers need to learn to evolve those, we know what we can’t do… people told us… plenty of times!

[NYCmom2]

Assuming you’re in the US and have a fairly typical insurance provider. There are so many new therapy websites popping up that connect ADULTS (18+) with therapists, psychiatrists and RNs with therapy certification able to prescribe by telehealth and take your insurance. You can search their specialities and look for ADHD. We’ve had a lot of success searching providers by the ADHD distinction and they often self identify as ADHD themselves. They have a deeper understanding of the nuances.

These are just two of the many websites out there:

talkiatry.com (covers most states in the US and takes most major insurance)

JoinLavendar.com (serving NY, NJ, MA and Washington)

[SuperCupcake64 in reply to NYCmom2]

I am in the US and have good PPO insurance from a major provider. I don't really know how to assess the new online providers. I keep thinking "I live in a major US city with great hospitals and my son goes to college near another major city with great hospitals. Surely there is some doctor who is great with ADHD who we could just go and see." I checked out Psychology Today and didn't find it helpful. I could ask his current provider about people who specialize in adult ADHD; she is a pediatric provider so I assume he will "age out" with her someday anyway. The constellation of issues leads to such low self-esteem (at times) and even suicidal ideation. I feel like we are not quite there with the solution and am looking at this diagnosis as an opportunity for wholesale reassessment.

[anirush]

Psychology Today is where I found my grandson's therapist She is great and works work with him on handling social situations.

Like others mentioned, Intuniv was a great non stimulant addition to his meds.

It is such a life long struggle.