PANDAS

[Pudgeo]

I second that...My son has been on azithromycin for 2 weeks and no change...but he's had PANDAS for 1 1/2 yrs...aaargh

Sarah

[Worried_Dad]

Hi, EAMom:

 

Please accept my apologies - didn't mean to imply that this disease is any less traumatic for younger kids and their families. I'd just read some articles that said younger kids seem to heal faster and more thoroughly (on average) from the brain injury.

 

I guess what's really breaking my heart the most right now with this latest flare-up is how our son clearly recognizes that his OCD thoughts and behaviors are completely irrational, but he can't overcome them. He breaks down in tears and apologizes over and over... which just rips me up. We are SO desperate for some positive signs right now, and really clinging to the hope that the zithro will help.

 

We'll definitely try the Advil, too. Makes perfect sense that this might help with the brain inflammation; it's an NSAID, right? We'll let everybody know how it's going as we get further along with the zithro.

 

Thanks for the advice, everybody. These online forums are sanity savers!!!

[EAMom]

You don't need to apologize!

 

I agree...it make total sense younger kids should be able to heal faster and experience a more complete recovery.

 

I also feel that repeated exacerbations are not benign...who knows what damage is being done from the chronic basal ganglia inflammation.

 

Nobody knows how many adults with OCD and/or tics/tourettes would not have these problems if strep A did not exist.

 

Yes, Advil/Ibuprofen is an NSAID...interestingly I've read studies where it's use (I think older folks who take it for arthritis) is correlated with *lowered* rates of dementia. I don't believe they've found this benefit with other NASAIDS.

[EAMom]

Sarah,

 

Maybe those with more chronic of PANDAS cases should give Azithrormycin a longer trial...2-3 mo. (vs. 1mo. for shorter episodes)?

 

Our daughter's episode lasted 5mo. before we disovered Az.

 

I also wonder if the Advil had some kind of synergistic effect...helped the Az. work better?

 

EAMom

 

PS.

This will be my mantra:

1) try the Azithromycin (and Advil)...unlikely to do much harm

3) low titers do not rule out PANDAS

3) culture family members to check for carriers, a source of reinfection

4) "strep carriers" can get PANDAS

[colleenrn]

WorriedDad,

I just read that you got a scrip for 4 weeks of Zithromax for your child back in August. I am wondering how they are doing and how they responded to the Zithromax. I am trying to convince my doctor to do the same for my child and I am having trouble.

Thanks, Colleen

[Worried_Dad]

Hi, Colleen:

 

I'm afraid my son's progress on zithromax was completely obscured by psych meds (ativan and zyprexa) prescribed by our local psychiatrist that put our son over the edge. By the time we were warned by others on this forum and by Dr. K that these meds were bad news for most PANDAS kids and tapered him off, we had tried the zithro, a steroid burst, and advil. Once we got him off the psych meds, he was much better... but still had pretty severe OCD symptoms. That's why we proceeded with IVIG a week ago in Chicago with Dr. K.

 

I know that others have experienced significant improvement just from the zithro, so they can probably give you a better idea. Our son's situation is kind of complicated, because he's on the older end of the spectrum for PANDAS (12) and was originally diagnosed with acute rheumatic fever / Sydenham's chorea.

 

Good luck. From what I've heard from other parents, the zithromax is definitely worth a shot!

 

 

WorriedDad,

I just read that you got a scrip for 4 weeks of Zithromax for your child back in August. I am wondering how they are doing and how they responded to the Zithromax. I am trying to convince my doctor to do the same for my child and I am having trouble.

Thanks, Colleen

[Pezmom]

My son was diagnosed with PANDAS 2 1/2 years ago, but it didn't become a nightmare until recently. In the past, he would get sudden onset of tics (both vocal and motor) and would have increased impulsivity. We would do a round of Zithro and the tics and impulsivity would go away until the next sore throat. I've often said it's caused by more than strep in my son.

 

We had a good summer behaviorally, but he was sick and on antibiotics for much of it. Vancomyacin for clostridia, metronid for severe stomach issues including blood in his stool, and Zithro for PANDAS. These alternated and were not all done at once. At the end of Kindergarten in the Spring and throughout the summer, people were saying my son had recovered from autism. He was doing that well. In early September, all ###### broke loose. Extreme impulsivity and full-on Tourette's with coprolalia. We had to pull him out of the private school he was attending and have begun a homeschool program while we navigate the IEP process in our public school program for the first time. He was on Zithro every 3 days when this happened. We switched to Ceftin as I believe he may have built up an immunity to the Zithro. We saw immediate improvement with the tics and impulsivity improved, but still stayed impaired. We ended the round of Ceftin and went back on Zithro every three days. Tics came back with a vengeance and impulsivity increased again. We are now back on the Ceftin with isome mprovement and have begun a steroid burst. Our doc has prescribed prednesone at 3 times per day for 3 days, 2 times per day for 2 days, and then once per day. So far, we haven't seen a big improvement, but it's still early.

 

I'm obviously concerned about continuing to use antibiotics and don't want to see another sudden deterioration like this. We had our doc send our labs to Dr. Gupta at UC Irvine for review to see if he thinks our child would be a good candidate for IVIG. I've also been on the phone to Dr. Swedo's staff at the NIH and am hoping to see her for coffee when she speaks at the DAN! conference in San Diego later this month. Our DAN! doc is for IVIG, our pediatrician says to try another year on the antibiotics and some steriods. We are worried about the dangers of those medications, but also worry about the risks with IVIG.

 

The Neurologist and Tourette's specialists don't believe in PANDAS and don't seem at all concerned about this sudden neurological deterioration. We've made an appt with another Neuro, but he can't see us for 2 months. Did anyone find anything important with an MRI?

 

I'm worried about getting my son back and also about how this will impact him socially and emotionally at his new school. I'm happy to have found you group of parents and would welcome any feedback you have. Our son is 7 and it feels like a different kiddo is living here.

 

Thanks for your help.

[EAMom]

Hi Jena,

 

Would they have to sedate your son to do the MRI? I know that is a concern for some people.

 

Re Azithromycin, what dose is your son on and how much does he weigh? Our dd (got down to 42 # last spring due to PANDAS anorexia nervosa, now at almost 55#) is on 250mg daily since June...we're hesitant to mess with what is working after a 5mo. PANDAS nightmare. This dose might be on the high side but the pediatric rheumatologist at Stanford seemed okay with it. (My dd turned 8 in July.)

 

Several parents (anedoctal stuff I know) here note that with repeated episodes of PANDAS, their children become less responsive to antibiotics...maybe this is what is going on with your son?

 

We're kind of in a holding pattern with dd...she's doing well on Azithromycin. We're a bit nervous about using it long term but also have concerns about IVIG...certainly either is better than the alternative (more PANDAS).