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Hi,

I was hoping that some of you who have been dealing with PANDAS for awhile could help me gain some insight.

 

My 11yo son was diagnosed 6/07 following A SUDDEN ONSET SEVERE OCD/TIC episode so severe in fact that we couldn't even get his first set of labs until

August (about 6 weeks after onset of sx)

 

8/7/08 ASO 192 (ref 0-149)

8/7/08 AntiDnase B 680 (ref <170)

 

course of Keflex 10days

 

 

9/2/08 ASO 202

92/08 Dnase B 960

 

Amoxicillin 250mg twice a day prophylaxis

 

9/29/08 ASO 215

Dnase not done

Tonsillectomy and Adenoidectomy totally back to normal

 

11/19/08 ASO 210

11/19/08 Antidnase B 297

 

Over christmas vacation he did miss a couple doses of amox when he went to a sleepover

 

Jan 8th 09 started with facial tic looks like Samantha from bewitched (otherwise no OCD acting fine)

tic got worse (more frequent ) over the next few weeks

got labs on

1/28/09 ASO 190

1/28/09 Antidnase b 680

 

today 2/1/09 his tics are much much better--

My ? is could he have broken through the prophylaxis? Has anyone had this happen and what did you do?

 

Thanks for any reponsed

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Hi CWMOM,

 

Have you had your son tested for strep? He can still be positive without common symptoms. Anytime my sons symptoms increase I always have him checked. His pediatric neurologist told us with certain antiobotics, if you miss one dose the levels drop considerably, and it gives strep a chance to infect the child. He specifically said this happens with Pen V.K. Not sure if this could happen with Amoxicillin?? Hope this helps.

 

Regards, Glenda

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Hi CWMOM,

 

Have you had your son tested for strep? He can still be positive without common symptoms. Anytime my sons symptoms increase I always have him checked. His pediatric neurologist told us with certain antiobotics, if you miss one dose the levels drop considerably, and it gives strep a chance to infect the child. He specifically said this happens with Pen V.K. Not sure if this could happen with Amoxicillin?? Hope this helps.

 

Regards, Glenda

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Hi Glenda,

 

We don't recall him acting sick at all. Our rheumatologist felt like it had been so long form the onset of sx tht the strep test was going to be negative at this point.

He felt it more important to look at whether or not he had strep- and I interpret the labs as showing that he did. despite the antibiotics.

 

I have not yet spoken to him

I'll keep you posted,

Maura

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I know of a mom I spoke to who's son has PANDAS and said he can get strep while on pen vk. The Dr. changes his antibiotic during exacerbations or even when siblings get strep. She said they change from pen vk to clarithromycin for a few weeks. They seem to have this down to a tee. The Dr. has three PANDAS cases. She is not a network Dr. though. Even has begun writing psych meds to treat his other symptoms. She said dr. has an autistic daughter and really gets what the PANDAS kids are going through. This mom would like to start a support group for PANDAS parents.

 

Michele

Hi Glenda,

 

We don't recall him acting sick at all. Our rheumatologist felt like it had been so long form the onset of sx tht the strep test was going to be negative at this point.

He felt it more important to look at whether or not he had strep- and I interpret the labs as showing that he did. despite the antibiotics.

 

I have not yet spoken to him

I'll keep you posted,

Maura

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Hi Cwmom,

 

Your doc should have done a throat culture, even if it was 6 weeks after onset of tics. Some kids will remain positive for a long time. Our dd was culture positive (throat and perianal) 2 mo. after FEVER (likely strep infection). We think both our kids are "strep carriers". Strep carriers can harbor strep for months or years (and are harder to clear with abs.)

 

That said, if your child is already on abs, you could still do a culture but it will likely be neg. (could be false negative), as the antibiotic will supress the strep enough to make it "not culturable" even if it's still hiding out in small amounts (this happened to our dd when she was on amoxicillin).

 

Our younger dd (non pandas, strep carrier) will get strep (culture positive) with no symptoms. I know other (PANDAS) kids on this forum will culture positive and the only symptom is a behavior change.

 

It is a pet peeve of mine...docs that do strep titers but don't culture, esp. at onset when the child hasn't yet been on abs. According to Swedo, you don't even need to bother with titers if the culture is positive, that's the best evidence of a strep infection.

 

I should probably also add that we didn't find amoxcillin effective for our dd's PANDAS. Others have had similar experiences...I know Worried Dad didn' find it that effective either.

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cwmom,

 

Sorry to hear of your son's problems. I do agree with the others that it is always a good idea for a culture anytime there is a reoccurance of symptoms. My son also takes amoxicillin 250mg twice daily. If he were to miss a full day of treatment he would show symptoms even if there was no exposure. Dr. Murphy said they don't have a complete explanation of why some children are so dependent on antibiotics to control symptoms, but it seems to be a common theme with PANDAS children. On that same note, we have had one episode of tics returning without missing any antibiotics. We switched to Augmentin for 14 days, (even though the culture was neg.), then back to the regular maintenance dose of amoxicillin. It did seem to help and after about a week of the treatment he was mostly back to baseline. I think that in some cases the consistency of antibiotics is as important as the type.

 

On the subjet of the titers. It is very difficult to say for sure what that indicates for him. My son had an antiDNASE level of 3,000 six months after his tonsilectomy and the start of his antibiotics. His pediatrician couldn't believe it. I think you really have to watch for the trends in the titers more so than the level itself. PANDAS kids have such abnormal responses from their immune system and it appears differently in many of them. That seems to be why it is so hard to find one concrete treatment. So many of them will respond differently to each therapy. I guess that is part of being an individual. Hope to hear that your son is better soon.

 

Dedee

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Thanks everyone for the input.

 

In terms of the throat cx- I should have asked for one the first day I noted the tics -in early Jan even though he otherwise was asymptomatic. ( He just hates " the swab " so much he'd rather get blood drawn.We have spent literally hours in the office trying to coax him into getting the culture in the past.

 

Since he was not ticcing badly and he had no OCD sx I decided to watch and wait. the tics got worse and by that point weeks had gone by. I assume he had a strep as the antdnase b level rose from the 200's in Nov to 680 now.

 

He has not gone up on his amox and the tics are gone-- not sure what to make of it--( just happy that he is well)

 

thanks as always for all of your thoughtful insight.

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Do others here notice mouth sores when the symptoms are coming on? My son started the urination frequency and the mouth sores on the weekend. He also seems a bit obsessive again on ideas. I wonder if the anxiety it is from the stimulant I started him on Sat.

The psych said to change it from adderall xr to concerta this weekend. Are others using stimulants for the add?

 

Michele

Thanks everyone for the input.

 

In terms of the throat cx- I should have asked for one the first day I noted the tics -in early Jan even though he otherwise was asymptomatic. ( He just hates " the swab " so much he'd rather get blood drawn.We have spent literally hours in the office trying to coax him into getting the culture in the past.

 

Since he was not ticcing badly and he had no OCD sx I decided to watch and wait. the tics got worse and by that point weeks had gone by. I assume he had a strep as the antdnase b level rose from the 200's in Nov to 680 now.

 

He has not gone up on his amox and the tics are gone-- not sure what to make of it--( just happy that he is well)

 

thanks as always for all of your thoughtful insight.

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My son has very frequent "canker" sores. gets them every few weeks it seems. I can't correlate any symptoms to it.

Interestingly he had an outbreak of warts on his fingers over the summer that disappeared after tonsillectomy (it was weird, perhaps coincidental but add nonetheless)

I wonder if others see this.

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  • 1 month later...

Just an Update on the tics--

 

as of 1/28/09 tics just about completely gone

 

had labs redrawn on 3/2/09 ASO was 199 AntiDnase B 680 ( ironically he had a headache sore throat that day throat cx negative

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