Next step: medications?

[libera]

The backstory: DD was diagnosed with PANDAS last summer, and I began to believe DS (age 12) also had it. He has been officially diagnosed with ADHD and dysgraphia. We began a 2 week Abx trial last October that went well - he showed significant improvement.

 

Also during the time of the Abx trial, we started him on ADHD medication, because sixth grade was proving to be a disaster for him. He couldn't focus, or be organized, and it was contributing to his anxiety. Our daughter had done well on ADHD medication, and we were hopeful it would provide some benefit. His doctor recommended Strattera, which is supposed to good for those that have anxiety and adversity to medication (he does not usually do well). It was disastrous . . . his mood lowered and his anxiety went thru the roof.

 

Then, a strep outbreak hit his classroom in early November and w hat was once "manageable" morphed into full blown anxiety and school refusal. It got so bad that we had to put him in an anxiety/school refusal program. We were optimistic that he learned some good strategies, but two weeks after returning to school he was back in the same boat.

 

And forget ever getting to the doctor for blood tests . . . we are back to not wanting to leave the house. So at this point, I don't even have an official PANDAS diagnosis for him.

 

So, desperate to help him, I decided to focus on his anxiety and gave him l-lysine. That was on Monday. By Wednesday, he was telling me that "the voices were telling him to kill himself." While the ADHD had lowered his mood, he was never suicidal. I immediately made the connection to the l-lysine. Now, his ADHD doctor wants him on anti anxiety and/or anti depression medication, and he wants to do it in a hospitalized setting, so his reactions can be monitored.

 

Of course, his ADHD doctor is skeptical on the l-lysine connection and PANDAS for that matter.

 

So, we don't know what to do. Do we go ahead and try the anti anxiety/depressives (given his past responses, I would only want to do this in a hospitalized setting anyway), or do we try to manage otherwise. Being out of school has helped - he is much less stressed, but I am not sure that is a permanent solution. What else can we do?

 

 

 

 

 

 

[MomWithOCDSon]

So you can't get him out of the house to take him to a doctor for PANDAS assessment, blood tests, etc.?

 

I might suggest if there's any possibility you could sedate him enough (risperadol, Seroquel, valium) to put him in the car and get him to a PANDAS appointment?

 

I am NOT, by a long shot, anti-psych med. We found a combination of low-dose psych meds, abx, supplements and therapy to be the most effective mix for full-scale healing of our DS. However, I would have concerns about an inpatient psychiatric program: that they will not be open to PANDAS diagnosis and/or treatment; that they will more permanently sedate your DS to make him more compliant but not actually get to the root of the drivers of anxiety and school refusal; that his functionality will continue to lag because those psych meds, and the rates at which some doctors change doses or medications altogether, are not entirely well-understood and/or documented, and your DS may suffer impacts that he doesn't have the capacity for fully articulating.

 

It may be obvious, but we had our DS in a hospital partial inpatient program for a short period before we got PANDAS treatment and after he'd become so dysfunctional that school was not an option; he spent the days at the hospital, engaging in therapy sessions and medication management, but came home and spent nights at home with us. Sorry to say, it was nothing short of disastrous. They continually changed his meds, added to them, increased dosages, etc. until his poor brain was just flooded with crap. If I'd known then what I know now . . . .

 

I don't mean to encourage you to NOT seek help for your DS, particularly if he's threatening self-harm. I just think it's worth seeing if there's an alternative, given as you know something about PANDAS, you appear to have access to a PANDAS-savvy physician, and your DS seems to be displaying some pretty clear PANDAS behaviors, IMHO. If you've got to figure out a way to admit him to the hospital and thus get him out of the house and into the hospital, perhaps you could figure it for a PANDAS doc appointment instead?

 

Hang in there!

[Wombat140]

If the blood tests are important, can your local doctor/nurse not do a home visit? (If your son can deal well enough with the blood test itself, that is.) That's what our family doctor is doing for me at the moment, since she accepts that I really can't make it to her office; and she's said she's willing to do that for tests ordered by other specialists or fixed up independently with a private lab, too, if the test sounds like it makes sense. It usually means waiting a few days until she has time free, but otherwise no big deal.