Duration of PANDAS symptoms before antibiotic treatment.

[P_Mom]

I am just wondering if quick treatment impacts the course of PANDAS. Can it enable you to avoid IVIG and/or PEX? Can you successfully manage PANDAS with early antibiotic treatment?

 

If the polls cpme back how I am thinking.....I would be a firm believer (well, already am) that any child presenting with a sudden behavior change (tics, ocd, anxiety, rage, etc) be given an agressive round of antibiotics immediately to see if symptoms improve. (even in the absense of ANY sign of infection)

Edited October 18, 2010 by P.Mom

[P_Mom]

My first vote was for my first child, older son. If I were to do it for my younger son...it would be.....

 

within 6 months

 

dramatic improvement over several weeks

 

Almost complete remission.

[thereishope]

.

Edited October 18, 2010 by Vickie

[thereishope]

.

Edited October 18, 2010 by Vickie

[swim]

I voted based on our oldest son - diagnosed about 7 years after symptoms started. With our younger son, we did antibiotics about 3 days after symptoms started. Symptoms were gone after 1 day on antibiotics, but we kept him on antibiotics for about 1 month. After going off antibiotics, he has been symptom free since about March.

[P_Mom]

It is interesting so far, the children who are currently in complete remission from antibiotics alone were treated within 2 months of onset (Vickie, Myself and Kayanne) (You can view who voted next to the question...just hit view)

 

So far, this is supporting what I believe to be crucial....treat symptoms immediately. When your child suddenly starts ticcing, or shows any new strange behavior.....give a good 3 week course of full strength antibiotics! It could really make a difference for the childs future, and, how could it hurt? Now if the medical community would just come on board and treat sudden onset tics, ocd, etc. with antibiotics REGARDLRESS of any apparant infection....I wonder how many kids this could help...and such a simple thing. I would urge any new parents experiencing sudden onset of behavior/motor changes in their child to do everything they can to get their hands on a good course of antibiotics...ASAP!

 

The time of treatment is corresponding with current symptom status in all areas so far, actually. The ones who marked 3 or more years are marked at 60-80% improved. Interesting. I find it peculiar that dr.K told us at our office visit that it doesn't matter how long the child has had PANDAS...the response will be the same to treatment. (assuming he meant IVIG, though) But, it seems it really does make a difference when concerning antibiotics. Not sure about IVIG...that would be a different poll.

Edited October 19, 2010 by P.Mom

[P_Mom]

I voted based on our oldest son - diagnosed about 7 years after symptoms started. With our younger son, we did antibiotics about 3 days after symptoms started. Symptoms were gone after 1 day on antibiotics, but we kept him on antibiotics for about 1 month. After going off antibiotics, he has been symptom free since about March.

 

 

Yeah, I really wish there were a way to vote twice!! I had the same problem, but, I voted based on my older son who had a very quick diagnosis (5 days from onset to treatment.....95% reduction of symptoms in 24 hrs. of antibiotics....currently complete remission)

 

My younger son presented first so it took a bit longer for treatment and diagnosis, but, still fairly quickly in the big scheme of things. Took him a bit longer to come around, and, currently, almost complete remission...not 100%. (I'd say 95%)

[eljomom]

I would love to know what antibiotics were used too. Also, if there were any who might have had a more "chronic" lower intensity (possible pandas) with a then more sudden explosion.....this is getting so frustrating for me---tried to get my daughter treated within a month of explosion of tics......nope. Now we are 4 months post-explosion, she's ticcing more and more frequently. But she'd had a couple tics for a few month prior, and mild ocd for a couple years.....

 

 

It is interesting so far, the children who are currently in complete remission from antibiotics alone were treated within 2 months of onset (Vickie, Myself and Kayanne) (You can view who voted next to the question...just hit view)

 

So far, this is supporting what I believe to be crucial....treat symptoms immediately. When your child suddenly starts ticcing, or shows any new strange behavior.....give a good 3 week course of full strength antibiotics! It could really make a difference for the childs future, and, how could it hurt? Now if the medical community would just come on board and treat sudden onset tics, ocd, etc. with antibiotics REGARDLRESS of any apparant infection....I wonder how many kids this could help...and such a simple thing. I would urge any new parents experiencing sudden onset of behavior/motor changes in their child to do everything they can to get their hands on a good course of antibiotics...ASAP!

 

The time of treatment is corresponding with current symptom status in all areas so far, actually. The ones who marked 3 or more years are marked at 60-80% improved. Interesting. I find it peculiar that dr.K told us at our office visit that it doesn't matter how long the child has had PANDAS...the response will be the same to treatment. (assuming he meant IVIG, though) But, it seems it really does make a difference when concerning antibiotics. Not sure about IVIG...that would be a different poll.

[Fixit]

I am just wondering if quick treatment impacts the course of PANDAS. Can it enable you to avoid IVIG and/or PEX? Can you successfully manage PANDAS with early antibiotic treatment?

 

If the polls cpme back how I am thinking.....I would be a firm believer (well, already am) that any child presenting with a sudden behavior change (tics, ocd, anxiety, rage, etc) be given an agressive round of antibiotics immediately to see if symptoms improve. (even in the absense of ANY sign of infection)

 

the poll doesn't fit right now, so i will answer here...the short polls are tough on complex answers

 

prior onsets caught w/i 2 weeks...

abx response in 24hr...remission in 4 weeks...

this last onset...was ds 16th onset...to pick a number..he was 9, and i believe it was not strep or other bacteria...but myco p....

receiveed cephelxin 10days at low dose....but did nothing.(wrong abx, wrong dose)

could not get anyone to do other or more abx...

11 months later..found myco p....started treatment but nothing....

its been 7 months since starting abx, other protocals...and we are still working on it...

[thereishope]

My son had amoxicillin. The only reason he got the antibiotics at all is because I lied and said he had a sore throat. He had no symptoms of strep. The rapid came back negative, but the culture came back positive.

 

 

I would love to know what antibiotics were used too. Also, if there were any who might have had a more "chronic" lower intensity (possible pandas) with a then more sudden explosion.....this is getting so frustrating for me---tried to get my daughter treated within a month of explosion of tics......nope. Now we are 4 months post-explosion, she's ticcing more and more frequently. But she'd had a couple tics for a few month prior, and mild ocd for a couple years.....

 

 

Edited October 19, 2010 by Vickie

[ajcire]

It's hard to answer. I assume you mean in hindsight so if my ds presented with an eye blink at 2 but I was told it was nothing and then at the age of 6 I pieced it all together and he was on antibiotics that it was a large gap of time from initial onset. If I go from the night he stopped sleeping alone and started having wonky meltdowns it was just a few months. I am guessing though that I would answer that it was 3 or more years? I didn't answer the poll yet as I don't want to mess up your collection if I am not understanding right.

[PhillyPA]

I compare PANDAS to cancer. You catch it early, your chances of a cure are very, very good. You catch it later, it is so much harder to get rid of. I voted on my youngest son. It was caught within days of onset. In three weeks the ocd was gone and he stopped spitting out his food. He had steroids and augmentin. Thanks to the suffering of his older brother, my youngest was saved.

Edited October 19, 2010 by PhillyPA

[norcalmom]

We did ivig, so I didn't answer your question. I can tell you that my son's first (altho may not have been his REAL firtst) episode presented more like S.C. so - probable strep (what we now know is a peri-anal strep, a minor rash treated at home with topical antibiotic cream) and then several weeks later some OCD symptoms, the several weeks after that -severe tics and a number of other symptoms.

 

After that, every time he had an exacerbation - all the symptoms would happen at the same time. He was on antibiotics by approx 9 mo. post the inital suspected strep. They helped reduce both the intensity and duration of exacerbations. He would return to what looked like subclinical levels (only i would notice random tics, some OCD) at baseline. Initially we were hopeful that keeping him strep free and heath would give his brain time to heal. But, over the next 6 months he had 3 exacerbations, two that were apprx 5 weeks (1-2 week ramp, 2 week bad, then fade) and, most importantly, his baseline was not improving, after each exacerbation he would "keep" another symptom - making hsi baseline go from subclinical to clinical.

 

During this time we also did an intensive assessment with a gifted and learning disabled specialist. Although the teachers told me that son didn't seem to be classic ADHD, they though something was up with his learning. And, he was exhibiting signs of anxiety (that were coming off more like he didn't care, or he was bored). HE wsas getting good grades, but I could see some frustration with school in general.

 

What we found was that he was "twice exceptional" or 2e. His giftedness was masking some pretty severe learning disabilities. Causing some pretty severe anxiety. Specifically he was having problems with doing fine motor skills at the same time as spatial functioning. Like, writing down equations when doing math. Copying from the board. Any kind of graph or chart that required you to write as you go. He would always do the stuff in his head (we thought he was being a smart aleck - since he would often get even complex stuff right) he would loose 50% for not showing his work, or explaining his answers. This was because HE COULDN'T. Never knowing when he might be asked to perform something requiring this skill, was causing alot of anxiety around school, which he was masking with his "cool" attitude of not caring.

 

I'm telling you this because I think there are symptoms of this disease that can remain hidden. So, if your child is showing anxiety, there may be some underlying pandas symptoms you can't see. DS was in bottom 2% of the two tests that specifically isolated the spatial fine motor processing. And, well above average in all other areas. He obviously had figured out how to compensate. Weather he was gifted in those areas, or weather his brain had developed these areas more fully because he was lacking in the one area we will never know. I am confident that he did not have that disability prior to pandas - and no mistake that it involves math and hand writing.

 

So, we decided to do the ivig because of two things. One - baseline getting a little worse between episodes, and two - because of the assessment I could see it was effecting his brain. And even though almost subclinical, and completely functional, I didn't want to find out how that might play out with his self esteem and anxiety levels going into middle school.

[peglem]

I answered quick, dramatic improvement w/abx, not because abx put my daughter into remission, but because zithromax did give her very noticeable improvement very quickly- w/in hours.

[NancyD]

While Pen VK put my DD into remission 8 years ago within 48 hours, it was a combination of Augmentin XR and HD IVIg that put her in "near remission" this year. Once I can sort out the role Lyme is playing I may soon discover that the remaining symptoms (i.e., scrupulocity, intrusive thoughts, anxiety) are tied to Lyme and not PANDAS. But the key PANDAS symptoms (i.e., rages, severe tics, sleep problems) have been 100% gone for 5 months now.