Pandas and Adhd medication?

[Broo100]

Hi everyone. My 12 to son had a neuropsych evaluation and all sort of interesting things popped up. He has Inattentive add (without hyperactivity). His test results go from 50% on untimed to 98% timed. The two official dianoses for the DOE are Specific Learning a Disorder with impairment in reading and Provisional tic disorder to cover his PANS.

 

HIS school is going to offer him more time in his exams which is going to really help as well as targeted support. The neuro lady suggested that, In the future, we may want to consider some adhd medication. She has no background in pandas. My question is, do these type of medications worsen pandas symptoms? He is doing great and off all medications now but infections trigger the cycle again. His triggers are strep, coxsackie and myco (maybe more but so far these). He is asymptomatic when infections are clear. Thanks

[chubbermommy]

It depends on the medication and your child, I think.

 

My son was put on clonidine for his tics; clonidine has also be used for ADHD. They had no effects on his tics, made him sleepy, and at a slightly higher dose, made him totally out of it and zombie like. So no thanks.

 

But I think it's hard to say what the reaction will be.

[airial95]

We waited almost 3 years before we decided to put my son on any ADHD medication. We hoped that it was just a symptom of the PANDAS and would resolve itself with all of the other symptoms. It didn't. Finally, at almost 5 years old, we pulled the trigger and put him on Vyvanse. What made the decision for us was his impulsivity had gotten so out of control that 3 times in one week he almost got hit by a car letting go of my hand in a parking lot darting out into traffic. At that point we decided that child on drugs was better than a dead one.

 

We chose Vyvanse because it had a low dose available, and it didn't need to be titrated up or down if we wanted to stop it. The results were amazing.

 

Since he has started the Vyvanse, we have tried twice to take him off. After IVIG, all of his PANDAS symptoms were completely gone - he was 100%. So we decided to try eliminating some abx/meds. We obviously started with the Vyvanse because it was the one we were the least comfortable with. Within 4 days his teacher was calling us telling us something was off, wondering if he (or someone in the family) had strep, she hadn't had any kids out sick but he was starting to call out at inappropriate times, act out, unable to focus or sit in his seat and all of the fun stuff we saw before the Vyvanse (his teacher didn't know we had taken him off. We like to get their objective thoughts). We put him back on. The second time we tried to take him off the exact same thing happened.

 

At this point his PANDAS symptoms are well controlled, but he needs the Vyvanse for the ADHD. Our doctor is of the mindset that because the Vyvanse works so well (most meds won't work if it's just a PANDAS symptom), and because the ADHD is the ONLY symptom that has not resolved (and it has not been his worst symptom by any stretch of the imagination!!) Until something else changes, we will just continue to look at the ADHD as separate from his PANDAS. Considering his ADHD symptoms do not change in a flare (they are pretty constant, no waxing or waning like other symptoms), we don't have too much of an issue with taking that approach for now.

Edited September 2, 2014 by airial95

[SSS]

We did try ADD meds while on a break from treating infections/ PANS.

One worked for literally 1-2 days- like a shock to her system, then back to the same behaviors.

Actually tried increasing the dose, same results, increase again, same results (shock system, acclimate.)

Too high dose/ too scary/ same thing.

2nd ADD drug we tried immediately put her OCD to crippling.

So a big NO for us.

 

So, moral of the story, these kids all react differently.

[riffleshell]

I have my son on Vayarin and it has helped him. It's not really a drug, it's more of a prescription food supplement. You can also do regular ADHD medications on top of it as it works differently. I'd try Vayarin before trying stronger drugs though. (Not that I have any problem with ADHD meds if you need them or if they help your child.)

 

http://en.wikipedia.org/wiki/Vayarin

 

Good luck to you. And SSS is right, all our kids are different.

[ktdommer]

My son, age 19 takes Adderall XR. He feels it helps him a lot. He was diagnosed at age 5 with ADHD, long before L yme or PANS. It was a lifesaver for so many reasons. He would request it if he had a Saturday soccer game because he played better he felt and didn't get in trouble with the coach. Then... Everything changed in 2010.