Dr. T, DS's school

[lynn]

DS15 has been on a downward slide for about a month. The OCD, ODD, ADHD and other alphabetic problems have proliferated. When he got back to back 65% on a Geometry Exam and 57% on chemistry, we decided we had to do something. Not before time too, because DS now can't do any homework or study for more than 20 minutes at a time. Not to mention consistant rage, inability to have a pleasant conversation, and incessant OCD demands on us.

 

So we went to see Dr. T. He really blew me away. I feel like there is actually someone on our team that knows what he is doing now! Overall info: There appears to be a second form of PANDAS that presents in older kids and is a bit harder to treat than the pre pubescent kind. IVIG typically does not work (we had two unsuccesful HDIVIGs). Many of these kids had to leave school for a while but later grew out of the whole thing (somewhat comforting in that there is still a "growing out of it" component, yet disturbing because if this lasts throughout high school, what about college?). Dr. T thinks we need to do some more pointed investigation of the immune system and we are going ahead with that. He also thinks PEX may be useful but wants to actually investigate what is going on first. We are also trying a different abx. He recommended that we also try Ibruprofen, but in a higher dose and more systematically over a week. This has actually helped--turns out our lack of success was in giving a 185 pound 6'2" child one 200mg pill per day.

 

This was encouraging and a good thing too because the bad thing was that DS was totally unable to do homework, study, or even discuss homework or studying all 4 days of the weekend. He just spent the whole time holed up in his room, pretending to work. It was so heartbreaking. We went to the high school today and asked what we could do. They are just great (it is a tiny school.) His guidance counsellor brought in each of the teachers and we worked out Matthew's plan, including letting him take his finals any day he is ready over the next month, forgiving all homework, and allowing him to take the Regents in August if he can't take them over the next week or so. But it was still so painful

 

I'll keep you informed. I do think there is a good end to this. DH, not so much.

[emmalily]

Just wanted to let you know Dr. K has some more info on this "adolescent adult variant" on his website.

[Mary M]

Wonderful to hear the school will be accomodating.

But so sorrowful that your ds's function is so debilitated.

So many heartbreaking posts lately.

Mary

from Michigan

[lynn]

Thanks Emmalily, I'll take a look. Thanks Mary M.

 

Continuing to muddle through. In the interim, he won the Science Fair and was apparently able to present his whole project and answer questions totally coherently. Maybe the clarithromycin is taking hold! Or maybe it's just random abilities that he still has.

[EAMom]

Lynn,

I've become obsessed with glutamate blockers recently. http://www.latitudes.org/forums/index.php?showtopic=13711

 

Does Dr. T. have anything to say about them?

 

Huperzine A is a glutamate blocker (so may help OCD) that has also been shown to help with memory (lots on huperzine and alzheimers if you google). Here's a study with Chinese school children

http://www.ncbi.nlm.nih.gov/pubmed/10678121

 

It sounds like it has minimal side effects and is available OTC. Here's a review article on Huperzine for Alzheimers:

http://www.ncbi.nlm.nih.gov/pubmed/18425924

 

From the available evidence, Huperzine A seems to have some beneficial effects on improvement of general cognitive function, global clinical status, behavioral disturbance and functional performance, with no obvious serious adverse events for patients with AD. However, only one study was of adequate quality and size. There is therefore inadequate evidence to make any recommendation about its use. Rigorous design, randomized, multi-centre, large-sample trials of Huperzine A for AD are needed to further assess the effects.

[lynn]

Hi EAMom

 

We didn't specifically discuss them, partly because we don't have any data indicating anything weird on glutamate. It could be that some of the additional lab work he has us doing will bring them up (sorry, don't have the list here at work.)

 

BTW, I bought some Huperzine A and tried it. It felt very weird -- extremely focussed, but in a not unpleasant way. Then everything else became too involved and I abandoned the experiment until things calm down.

[melanie]

where do you get this I lookd it up in my Vitanine catalog but cant find any information

[lynn]

Source Naturals has it (Amazon, etc.) GNC has it at half the strength and twice the cost, but you can just drive up and take it away. Also, I'm not opposed to starting at half the strength.

[EAMom]

Hi EAMom

 

We didn't specifically discuss them, partly because we don't have any data indicating anything weird on glutamate. It could be that some of the additional lab work he has us doing will bring them up (sorry, don't have the list here at work.)

 

BTW, I bought some Huperzine A and tried it. It felt very weird -- extremely focussed, but in a not unpleasant way. Then everything else became too involved and I abandoned the experiment until things calm down.

 

Hi Lynn, what dose did you take? I see it comes in 50, 100, and 200mcg sizes.

[lynn]

GNC only had it in 50's so I took that.