Gifted Issues Discussion homepage Forums Twice Exceptional Medical merry-go-round

So, we started with 10mg Methylphenidate 2x a day, initially my DD said she could tell the difference immediately and was able to write (essays/poems/songs etc) much more readily and she could instantly answer math facts while on the meds when she had trouble with those things before.

After a few weeks she said she really didn't think the dosing was high enough so the Doc upped it to 20mg in the am and 10 in the evening, then 20mg extended release 2 x a day. My DD says it is a little better but still not high enough.

How do you know when the dose is high enough? It is especially tough now because she has no school or work to judge improved performance on, but her motivation just to get out of bed doesn't seem to exist. She is supposed to be looking for a job but just seems too exhausted/unmotivated to do anything. Is this just teen sloth, or medicine related? I thought this stuff was a stimulant but she seems to be able to take one in the morning and go back to bed for 4 hours.

Does anyone have experience or advice on what it takes to find the right dose? How long do you give it before you decide it isn't working well enough? I know the doc should be able to help, but I don't feel like she really has a lot of experience in this area to relate to.

Hi Nik,

Is your DD depressed? If so, the methylphenidate won't really treat that. Changes in sleep are a warning sign for depression, and should definitely be followed up.

Who is your prescribing doc? With your complicated set of diagnoses, you should really try to find a psychiatrist or developmental pediatrician who's seen and prescribed for lots of other kids like yours (including ADHD and the autism spectrum). You will want someone who's intimately aware of all the effects of all the possible meds, and experienced in both diagnosing kids and choosing dosages. We have been very happy with our dev. ped. in this regard.

I wouldn't rely on your DD's opinion to adjust her dosing; kids can be very peculiar in their judgments about their medications. Too much of an ADHD med is usually just as bad as not enough.

While you're working on getting the appointment with a suitable doc, take some data: note how she looks to you, how she says she's feeling, how much she's sleeping, etc. That way you can bring hard evidence to the doc that will help them make a solid assessment and hopefully figure out what needs to be adjusted.

HTH,
DeeDee

Thanks DeeDee, my DD says she isn't depressed anymore. Her sleep issues aren't new, she has had trouble with staying on a regular sleep schedule for years leading to tardiness and truancy issues in school due to missing the bus so many times (she was the last one out of the house in the morning). She often stayed up all night as a baby/toddler but then she was active during the day too). I am just surprised that she can still sleep or lay around all day while taking stimulants.

Our doc is a DO that we started seeing a couple years ago when the girls got too old for their pediatrician.

So to find a specialist who has all of that background for an almost 18yo, is there a special title you would look for? I don't know where to start looking. Would a dev. ped be the right place to start given her age?

Thanks

Hi Nik,

Please don't take this the wrong way, but your DD may not consider herself depressed, yet she may actually be clinically depressed. I'd want to get an expert involved to be sure. You said she has PDD-NOS, right? People on the autism spectrum are often not that reliable at assessing their own inner states, at least not in a way that matches up with the standards you or I would use.

Who diagnosed your DD? Can that person point you to a local expert for treatment?

I'd probably do some assertive phoning around to see who you can find in your area; a developmental pediatrician would be good because they are so aware of how to treat things like ADHD and autism; but yes, a developmental pediatrician may also want to send her on to someone else who treats adults. Our local children's hospital treats them up to age 21, I think, so you might be able to go either way, with expertise being your first criterion.

A psychiatrist who treats adolescents and young adults, one who's seen a lot of kids who match your DD's diagnoses, could work well. And if you meet them and they don't seem to get it, KEEP LOOKING! As in any profession, there are better and worse ones, and it takes a while to find one with expertise and good fit.

HTH, will be thinking of you--
DeeDee

No offense taken, I totally understand that she may not be the best judge, but she was pretty matter-of-fact about telling me she did not seeing the point of living a year ago, so I do think she does have some compass on how she feels.

She has a lot of hope now that she didn't have before since she is going to an amazing college in 3 months and I think it helps that she knows we (some of her family) are finally starting to understand that she really is dealing with difficult differences, not just laziness...it's just getting through the next 3 months and trying to sort out the dosing before she leaves...

I wonder if she may be just trying to avoid the unknown-and-perceived-as-potentially-highly-unpleasant act of getting a job by hibernating.

We have no insurance beyond a catastrophe plan right now ($6,000.00/year deductible), so trial and error with different docs isn't really affordable beyond phone calls and I suspect few psychs will admit they do not have lots of expertise. I will call the diagnostician and see what she suggests but the psych their office is affiliated with did not impress me, he spent no time getting to know my DD beyond reviewing her test results and asking her a quick checklist of questions in his office.

Thanks

Nik, another call to make-- some counties and states offer financial help to people with disabilities. I'd hate to see the money stand in your way if help is available through other sources...
DeeDee