Anonymous wrote:

Anonymous wrote:Sounds like a misdiagnosis

Agree

Not necessarily. Not all meds work for all kids. My kid didnt' respond to ritalin at all, but Methylphenedate ER was life changing.

Anonymous wrote:OP here. We had a full neuropsych eval done (to answer one of the PP's questions), and ADHD certainly tracks because DH and our other DC have it, but his presentation is different. It's possible it is a misdiagnosis - I am a little skeptical, as you have seen from my post - but I'm also interested in seeing if this could help. He struggles a lot with reading ane could use all the boost he can get there. We already have had him in tutoring and are doing an intensive summer program, so it's not that we are hoping the meds will magically fix it (although I would love if they helped with retention!). He's a super sweet kid and very smart but totally turned off of academics because it's so hard for him - and it's going to only get harder.

The psychiatrist today suggested another increase in meds and to try a different one if it does work.

FWIW, my ADHD kid also struggled with reading. a full neuropsych and assessment by a speech and language pathologist revealed that he had MERLD and some other speech and language processing issues and rapid naming difficulties. That meant that he benefitted from a style of reading instruction that more explicitly taught the sound symbol connection, which is the kind of instruction more appropriate for kids with dyslexia, although he was never diagnosed as dyslexic. He can read - as in “decode” - very well now, but because of the ADHD, he still finds it very difficult to read long, boring or dense texts. He needs to use supports for those - text to speech or audiobooks, highlighting, outlining, watching a video of a subject instead of reading, etc. TBH, because of the ADHD he’s never going to like reading unless he is super interested in a subject. Meds help him to steel himself to do it anyway when it’s boring, but they don’t make him like it.

Anonymous wrote:My DC is on the highest dose of a stimulant. It's just what they needed - it all just clicked at that dose.

Yes, it is not one size fits all. Some kids respond to one med but not another. Some respond to a low dose, while others respond after a higher doses. It can take a year to figure out what works for your kid. Just keep letting the doctor know that this dose of this med isn't having any effect. We move slowly and cautiously with our inattentive kid, and it took a year and a half before we hit the (generic) dose the worked best and still had no side effects. I'll add that this as been a life altering improvement for this kid.

FWIW if you take methylphenidate (Ritalin/Concerta/etc.) and don't have ADHD, you would feel it immediately: you'd feel jittery, unfocused, might hyperfocus on random things unrelated to what you are trying to do, etc. If your baseline is normal, it puts you over the edge. If your baseline is super low, you won't feel a thing until you get to a dose that brings you up to normal (so to speak). This suggests that if your kid is truly feeling nothing at all as the dose increases, he hasn't hit the workable dose yet, but talk to your doctor about it.

Anonymous wrote:

Anonymous wrote:My DD was diagnosed with ADHD at 5, and at 7 we had a full neuropsych that confirmed the ADHD and diagnosed a reading disorder. The evaluator said the reading issues *could* possibly be related to the inattention.

Fast forward my kid is now 16, and decidedly does NOT have a reading disorder. She has been on every single stimulant (I think actually, except Adderall). They are ineffective at best and cause bad side effects at worst (Metadate was the only one they didn’t cause extreme irritability but was ineffective, all the others caused intolerable side effects).

A psychiatric nurse practitioner we recently switched to told us that stimulants only work for around 70% of people.

My DD is inattentive as well. Impulsive to some degree (verbally, with food) but the inattention has the most impact.

OP here. What was causing your kid's reading challenges then, and how did you work things out? Or did they not have reading challenges? Our kid clearly does. I think what we're trying to help here is to see whether part of his issue with academics is attention. He is going into 3rd and probably barely at a 1st grade level (maybe mid K, at least for writing). It feels like he doesn't retain things like I would expect either, and he has shocking gaps in knowledge - i.e. basically didn't know the days of the week in order until a few months ago and still doesn't know the months. He's a COVID kid, so there were some gaps in early education, and we question how strong his prior school was... But these feel really basic, like things you would just pick up without a lot of explicit instruction. Neuropsych eval didn't show any other learning disabilities - just dysgraphia, dyslexia, and ADHD.

We did have some reading intervention in school. She did seem to struggle with reading, but I don’t think the intervention was what did it. I think it was 4th grade when she just seemed to “get it.” There are still some gaps in comprehension, but she’s since been diagnosed with ASD and that is also common. But she reads completely fluently, and when she’s interested in the subject and pays attention, she also comprehends everything. She has dysgraphia too. Diagnosed in 2021 through another neuropsych

Anonymous wrote:My DD was diagnosed with ADHD at 5, and at 7 we had a full neuropsych that confirmed the ADHD and diagnosed a reading disorder. The evaluator said the reading issues *could* possibly be related to the inattention.

Fast forward my kid is now 16, and decidedly does NOT have a reading disorder. She has been on every single stimulant (I think actually, except Adderall). They are ineffective at best and cause bad side effects at worst (Metadate was the only one they didn’t cause extreme irritability but was ineffective, all the others caused intolerable side effects).

A psychiatric nurse practitioner we recently switched to told us that stimulants only work for around 70% of people.

My DD is inattentive as well. Impulsive to some degree (verbally, with food) but the inattention has the most impact.

OP here. What was causing your kid's reading challenges then, and how did you work things out? Or did they not have reading challenges? Our kid clearly does. I think what we're trying to help here is to see whether part of his issue with academics is attention. He is going into 3rd and probably barely at a 1st grade level (maybe mid K, at least for writing). It feels like he doesn't retain things like I would expect either, and he has shocking gaps in knowledge - i.e. basically didn't know the days of the week in order until a few months ago and still doesn't know the months. He's a COVID kid, so there were some gaps in early education, and we question how strong his prior school was... But these feel really basic, like things you would just pick up without a lot of explicit instruction. Neuropsych eval didn't show any other learning disabilities - just dysgraphia, dyslexia, and ADHD.

My DD was diagnosed with ADHD at 5, and at 7 we had a full neuropsych that confirmed the ADHD and diagnosed a reading disorder. The evaluator said the reading issues *could* possibly be related to the inattention.

Fast forward my kid is now 16, and decidedly does NOT have a reading disorder. She has been on every single stimulant (I think actually, except Adderall). They are ineffective at best and cause bad side effects at worst (Metadate was the only one they didn’t cause extreme irritability but was ineffective, all the others caused intolerable side effects).

A psychiatric nurse practitioner we recently switched to told us that stimulants only work for around 70% of people.

My DD is inattentive as well. Impulsive to some degree (verbally, with food) but the inattention has the most impact.

I would be following your gut here. The diagnosis itself seems questionable and not based on any observation or symptom reporting, other than the reading challenges. You are skeptical of the adhd diagnosis. Why are you medicating? What are you trying to achieve?

My son has inattentive ADHD and dyslexia; the first med we tried m(adderall) didn’t work at all - made zero difference. This year, his teachers requested we try again. We tried Ritalin and even at a low dose it was a huge difference. Meds are hard bc you have to find the right one + right dosage. I would try a different med before giving up - my son had zero academic confidence, but after this year he did a 180 and actually was able to identify that his meds are helping/notice a difference if he forgets, so it’s worth keeping at it.

I'm a special ed teacher and the parent of an ADHD-I kid.

I haven't seen much improvement in ADHD-I kids with stimulants. Many kids respond the way you describe.

In contrast the kids with hyperactivity and impulsivity usually respond dramatically and quickly. Sometimes they develop side effects over time that are intolerable, but it's rare for them not to react at all.