Not just rapid onset PANDAS

[Iowamom]

Hi all! I have never started a new topic, but here goes. There was some chatter on the Saving Sammy/foundation topic regarding the type of PANDAS onset. Perhaps when Dr. K and the other docs meet in January the notion that PANDAS can only be rapid onset can be laid to rest and a more refined diagnostic criteria can begin to be brought forward. It was 9 years of alphabet diagnoses and dancing around the real problem before our 10 1/2 yo. Dr. K says there is a subset of PANDAS kids get this very early on and it is missed because the symptoms are mistaken for something else. Curious...does the PANDAsnetwork recognize that it isn't just rapid onset? It should if it doesn't.

 

I know there are many kids that didn't have rapid onsets. Dawn

[mom md]

We definitely have PANDAS and had a waxing and waning course and have no idea when it started. Maybe it was 4-5, but occasionally I think it may have been even sooner like 2. Looking back, the symptoms were there but always diagnosed as something else. We definitely did not have the abrupt onset, point at the date on the calender presentaion.

[EAMom]

I would say our dd had some low-grade symptoms off and on for years...urinary frequency, episodes of anxiety, episodes of handwashing, sensory issues, irritability etc., but nothing obvious if you didn't already know a lot about PANDAS/ocd.

 

Our "big" PANDAS episode (spring 08) was fairly "sudden onset" in that symptoms started with a fever and built up (worsening after 2 tooth extractions) over a period of 2 mo. I think things really came to a head b/c of the strep infection combined with the extractions. Frankly, if it weren't for the extractions, I don't know if things would have gotten to the extreme point which enabled us to finally learn about PANDAS (after calling 20 psychiatrists in desparation, psychiatrist #21 said we should check her for strep) and I think it would have been very likely that she would have had medium-grade issues that would have been misdiagnosed for a long time.

[ajcire]

I wonder what would have happened if 5 years ago when I brought my 2 year old son into the ped office with a constant eye blinking if the dr. had said hey, let's just check for strep rather than tell me it was just a common childhood tic. That might have stopped the rest of my story right in it's tracks. I mean maybe it was just a common tic at the time but maybe.... just maybe we would have discovered strep. So really, when we can't say there was a sudden onset so much of that is because the doctors aren't connecting the dots.

[thereishope]

I did a quick look see at the website. There is a paragraph that states this on the opening page...

 

 

"PANDAS symptoms may have flared in a lesser manner for weeks or years prior to the acute onset but often readily disappeared or lessened over time. If untreated with antibiotics generally we have seen a myriad of other symptoms will intensify in the weeks and months post-acute onset. If the severe symptoms do not stop and persist over many months, permanent cognitive damage can occur."

 

If you want full confirmation that it represented somewhere on the site, you can always contact them via www.pandasnetwork.org.

 

 

 

 

Curious...does the PANDAsnetwork recognize that it isn't just rapid onset? It should if it doesn't.

 

I know there are many kids that didn't have rapid onsets. Dawn

[coco]

I also believe that our daughter has had this for 7+ years beginning at around age 2, ended up getting a pdd-nos, co-morbid anxiety disorder at age 5. We disagreed, but who was there to help, and believe me we searched!! Anyway, Dr. K believes that it is possible she's had it for years. She now 9 and finally getting the help she deserves. His thought is that whether you've had it for one year or several or more, the road back is the same. I am not so sure when you get into 5+, but I'd love to be totally wrong!!

 

I would be interested in hearing about how other kids who have battled this for many years are fairing with the treatments. Is it a longer road back because of the length of the untreated infection?

 

There is another topic on the forum entitled Dr Goldberg. I listened to an interesting interview he gave (sounds very recent) regarding diagnosis of NIDS, autism, pddnos, adhd, and the immuno connection. Very interesting and I learned a lot. If you google "NIDS Interview with Dr. Goldberg" you can listen, it's about an hour.

 

coco

[peglem]

I would be interested in hearing about how other kids who have battled this for many years are fairing with the treatments. Is it a longer road back because of the length of the untreated infection?

 

My 15 year old daughter has probably had this from infancy. Finally, with her Cunningham results this summer,(upper SC range when she was not in an exacerbation) her pediatrician feels he can get a specialist on board to get treatment.(Dr. Latimer talked with the pediatrician and thought she'd do best with PEX because of her CamK #'s and the severity and length of her symptoms). We see specialists at the beginning of next week- I'll be sure to keep you updated!

[sf_mom]

I think we know when our son got sick.... as he was fairly healthy prior to the whole 'RF/Scarlet Fever' exposure and his first TIC didn't appear until six months later. After two rounds of antibiotics to abate cough/TIC we were told it was a learned 'habit' and it would eventually go away. One year later, major on-set of TICS post high fever, sore throat and elevated ASO titers. We were fortunate it was TICS as we would have missed the mild OCD.

 

I am highly concerned for our younger son who also took ill at the time of exposure is only 2 1/2!!!! He is getting his ESR, CRP, ASO, Anti-DNAse-B, Step Antibody Titers and CaM all tested tomorrow. If it was RF, I'm convinced the bacteria is still there as he was only treated with IVIG and no antibiotics. It would be so hard to tell what is OCD/PANDAS at 2 1/2!!!!!!