Neuropsych testing for ADHD symptoms

[adkmom]

Hi all,

 

Just wondering if anyone has seen Judy Leventhal in NYC for neuropsych testing? My ds5 (ds4 when I signed onto this forum!) is still struggling with ADHD symptoms. He's diagnosed Pandas and Lyme and no one seems to agree on what is causing the ADHD behavior...Lyme, autoimmune stuff. We're trying to figure out the best possible treatment...

 

Any feedback via PM would greatly appreciated!

 

darlene

[Suzan]

I don't have any info on that but wondering if you've looked into possible kpu/hpu? I can't remember if I've seen any posts from you on the subject. I know that adhd is a symptom and I'm hearing can be common with lyme. I'm hoping that treatment will help my dd8 with her adhd symptoms (as well as others).

 

susan

[LNN]

We too are on the KPU path and of course, once you feel you're onto something, you want to suggest it to everyone else. Something for you to consider, but I'm not here to push it.

 

As for neuropsych testing, my only experience is based on Dr L's advice. We had scheduled an evaluation and paid the $2000 "retainer" before we started with Dr L (a friend ended up paying $3500 with the same psych before all was said and done and it took 4 months to get the final write up). She told us to cancel the appt. Her thought was that an evaluation would measure the impact the disease was having on DS's abilities but it wouldn't be an accurate picture of what was permanent and what was the disease. She was right. We got our money back (which was immediately sucked by by medical bills). If we had tested two years ago, when DS was a mess, it would have showed all sorts of issues. If we tested him now, many things wouldn't be there anymore.

 

So not sure what testing would accomplish. You know there's ADHD. But what will testing tell you in terms of how to treat it? I'd guess there'd be a recommendation to add strattera or other med. But if it's lyme or KPU or mold...an adhd med may or may not work. If you did want to try an adhd med, it seems like it would be much cheaper to get a trial from your ped instead of paying a ton for an evaluation. Not sure what you'd get from it that you can't get elsewhere for far less money.

 

As for handling the ADHD on a daily basis, what helped us, at least a little, was having a 504 plan that encouraged the teacher and TA to check on DS frequently and prompt him to return his attention to the task at hand. We broke up homework into short (5 min) intervals with 10-15 min breaks in between, even if that meant spending an hour on what should've been a 15 minute assignment. DS stood at the homework table instead of sitting. We did a lot of visual prompting to figure out a math problem, as staring at a paper was sure to make his mind wander. DS held a squeeze ball in his hand while he read a book. Some kids chew gum during homework. Some are allowed to stand or sit on a large ball in the classroom instead of a chair. It sounds contradictory, but giving the brain two things to do at the same time actually helps them focus. Keep the hands and body busy and the brain can focus better.

 

As we've progressed with lyme/bartonella/KPU, I have seen adhd get less and less. The residual has as much to do with his being bored by school as it does with anything else. He now has no problem concentrating on things he's interested in and doesn't lose his train of thought nearly as often.

 

Don't mean to sound so negative on the testing. It's just a very expensive thing. So wanted to encourage you to make sure you would get your money's worth. Good luck!

[JuliaFaith]

Another less-expensive thought on this (no pun intended) is "Neurofeedback" treatment. We are working on going that direction as son is showing signs of improvement and doc thinks he is ready for it. She also recommended a "Care Team" evaluation which sounds familiar to what you are talking about. We are looking into this as well. Our local Children's hospital offers this service.

 

My son loves throwing things in the air as he is doing other things. He can settle down fine reading a book, which he enjoys, but when it comes to other school work, that becomes a challenge.

Edited August 11, 2011 by JuliaFaith

[MomWithOCDSon]

If we had tested two years ago, when DS was a mess, it would have showed all sorts of issues. If we tested him now, many things wouldn't be there anymore.

 

 

Yes, LLM, yes!

 

We were encouraged by one psych to go for neuropsych testing, also; in our case, it wasn't just ADHD but some suspected ASD symptoms ("processing difference") as well. But DS was in exacerbation, and we knew that, when his health and his primary behavioral symptom (OCD) were under control, both the ADHD and ASD-type behaviors faded significantly or disappeared altogether. This psych was new to us, though, and she'd not seen DS out of exacerbation, so she had no "norm" measure by which to compare.

 

So, we proceeded with the preliminary "screening" for the testing; luckily, we were assigned to a very astute and honest psychologist who took a look at our records and our history, and interviewed our DS and us, and told us that he didn't see a need for any further evaluations at that time. Basically, according to him and via our own experience, the best applicability of neuropsych testing is for the purposes of advocacy with schools and other caregivers in order to secure the services or programs (such as a 504 Plan or an IEP) in the event the school is reluctant to concede your child's need for these without such additional testing and advocacy.

 

If, however, as in LLM's case and in ours, the school and your other caregivers are on board already, testing for this sort of "secondary behavior set" might not be the best use of your resources. All the best to you!

[smartyjones]

hi darlene. i'll chime in agreement with LLMD and OCDmom, neuropsych testing had also been recommended to us by a pscyh. she was heading that he was having an expressive language problem and suggested we could find out some good info. luckily for us, she said she sees the best results from at least age 6.5 -- halfway into the first grade year. ds was a bit shy of that so it wasn't something we would have done immediately. we never had done it and now i am glad we didn't spend the $ for it.

 

for us, sounds similar for you, pandas hit at a young age (4.5) so it is hard to flush out what may be subtle symptoms and what may be other issues.

 

we've always known(even before pandas) ds has extremely high logic and reasoning -- i state he has a 'puzzle mind'. it could be interesting for this testing to tell us 'how much' that extremely high is -- but really what will that do for us - ? a while ago, i came upon the reasoning that for all of us 'normal' people - what if we all have a cumulative 100% of skills and it's just arranged differently, wouldn't it be reasonable that if a person has 60% in one area, others would be lower. we had previously just been amazed at his high skills, well, yes, it probably does come with some sort of a price -- perhaps balance of other skills. just kind of my thoughts in general, not specific to pandas difficulties.

 

we have recently begun working with a tutor that has a special ed background and has trained with OTs. he did a type of eval on ds - for about an hour - which of course,showed extremely high logic and reasoning - not to the level of neuropsych but not to the expense either! he told me of another client that recently began that had stacks and stacks of tests and evals but the child is still having big problems. he(the tutor) was aghast at all this information but lack of help for the child!

 

 

i think ocdmom is correct -- the value being in showing it to the school in a manner that speaks their language rather than having them just think it's overbearing mom making excuses or explaining behavior/issues. when this whole mess started for us, we consulted a naturopath, she said of testing that early in her practice, she ran a lot of tests. it's great to have all that info, but she now only runs tests that are going to influence the way she treats. i think that applies here too -- what are you really going to do with the results? then, add to that that the results may be based on symptoms that may change.

[nicklemama]

We had the neuropsych testing before we knew about PANDAS. Save your money. If your child is in exacerbation, they will find things to diagnose. Our DS was given an Aspergers and mild bipolar secondary to the Aspergers diagnosis. With PANDAS treatment, he no longer meets the criteria for those. You'll be glad you used the money for treatment, instead. It cost us $3000 plus out of state travel expenses.