additional meds to prevent side effects?

[mommy007]

My DS has PANDAS, the symptoms of PANDAS are the same as ADHD, with a few added. He is off Adderall XR because after the Flu in Dec his tics/OCD increased 10 fold.

He is very unfocused at school and at home, The doc would like to try Paxil, but I am very scared of SSRI's because of what I read in the news.

Has anyone else had side effects on Stimulants and found an additional medication what counteracted the side effects allowing the stimulants to be effective without causing these side effects.

We don't want to give up, DS is 11 years old and will be going into 6th grade, the current staff is very concerned with the transition to next year and we are meeting May 6th to discuss. I would like to try meds once again, hoping by this meeting we can determine what direction to go. It has been mentioned an alternative school, however we would like DS to go on with the rest of his class to middleschool.

Do any of you have any luck with Paxil, or any other SSRI? Have you discountinued SSRI's and what is it like to discontinue, problems?

Any success with additional meds to block Stimulant side effects?? Stimulants do help DS alot, afer the flu he picked his face and it looked like chickenpox, about 25 spots. After we stopped the Stimulants his face is now clear. But his focus is awful.

I am so stuck, and my DS said he would take any meds in order to go to middle school with the rest of his friends.

Please any suggestions, experience with this would be much appreciated. We have struggled to help him for 5 years. Now that we know he has Pediatric Autoimmune Neuropsychiatric disorder associated with strep he is on and antibiotic daily to prevent strep/infections. He is getting blood work done monthly to check his titers. He is a happy boy, not defient at all, and wants to please.

Help

[lisle]

Hi, 007:
I am not sure I can answer but I will try and then I have a qus for you. My son is too anxious to be on stims, and when we tried Paxil it really helped him not to be anxious but he was way more hyper. The stims did cause picking on his nails and biting them to bits. But the worst part was the behavior they caused and the inconsistent positive results. Some of them caused him to have a fever, even. Well, the Paxil was not fun to get off of either. He had some definite dark moments for a couple of weeks. He acted very out of character. It lost him a couple of friends. I actually thought dr., couldn't prescribe the SSRI's for kids anymore. You might want to look in the natural alternatives section of this site. There are several amino acids that stimulate serotonin.
I think some people are using them. That's what stops the picking. I don't know if they would work for your son but it's something to think about.

PANDAS:
I have thought about this so many times. Did you go to a specialist to find out it's PANDAS? Right before my son comes down with strep, I can tell. He is so inflexible and oppositional. I see a big change in that when he takes the antibiotics usually. Not always. He has been awful the last two weeks and one day I was sure it was strep coming on, but there hasn't been further indication of it, no sore throat or excessive sleepiness like that day--his face has looked red though. So often we make the mistake of going to the dr. too early and they can't diagnose the strep. Do you have any suggestions about how to find out if it's PANDAS and how to find someone to treat it? Since the adhd meds don't work well for my son, perhaps that's why. He needs antibiotics?

He doesn't have actual tics. How did you get this diagnosis? I was also told by our pediatrician that even if it's PANDAS there's no special treatment. It sounds like you have one.

[mommy007]

Lisle,

Thanks for the info on Paxil, I am going to speak to the Neurologist about stimulants and see if something can be given to my DS for the side effects - he deserves to focus.

As for Pandas, I suspected Pandas for a couple of years. In February we went to see a Neurologist, we had see every other expert at that point. I mean Every!

So the Neurologist had lots of documentation to review from the previous evaluations. My DS did well on Stimulants until he would get sick, then side effects that were mild would explode, with each stimulant we had the same experience.

PANDAS is diagnosed by :
Presence of OCD and/or tic disorder
Pediatric onset
Episodic course of symptom severity
Association with GABHS infection
Association with neurological abnormalities – abnormal neurological exam (i.e. – choreiform movements or tics) during exacerbation

My DS is 11 and I can remember back when he was 3-4, just before he would get sick he would bounce off the walls, we would notice this behavior and just know he would be sick in 24-48 hours.

His ASO titer is 577 and the AntiDNase B is 477, one is twice the norm and the other triple.

The antibodies cross-react in the brain effecting the basal ganglia, the same part of the brain children with ADHD are effected, so the symptoms are quite similiar.

We have documented my DS getting Ill and his symptoms increasing almost "overnight". His titers are high. I also had rhematic fever and Sydenham’s chorea. So their may be a genetic factor involved.

He is on antibiotics not to correct the problems, but to prevent the increase of symptoms.

So we were basically at the end of our ropes and went to the Neurologist, the last stop so to speak. We had a 2 hours appt, he reviewed every little detail, ordered blood work. Once my son was off the stimulants his face that he picked cleared right up. Since the Flu he is more OCD.

If you suspect PANDAS you should follow up with a specialist, Pandas is very new and not all doctors understand it, because it looks so much like ADHD, it's easy to misdiagnose.

We medicated my DS for 4 years on stimulants before finding out he had PANDAS.