New Here 15 Y.O. Daughter, PANDAS 2 Days Ago

[kos_mom]

Pre-pubertal onset is more a research construct rather than a diagnostic criterion. A number of us have children with later onset, and I have heard practitioners say they are seeing more adolescent cases. In other words, don't let anyone let you doubt the dx because of age of onset. One reason it may be rarer is because, in Susan Swedo's words, 98 percent of the population is immune to strep by age 12. My two children are in the 2 percent.

Edited November 7, 2012 by ko's mom

[SurfMom]

Thank you, KO. Looking around the internet, there seems to be many over age 12 onsets. The possible increase in post-adolscent cases makes me feel more duty-bound, not just for her, to be thorough and communicative as we manage her PANDAS.

 

Does anyone know if there is a database being collected for PANDAS children...even the basics like age, onset, titer results, treatment, etc? I am carefully documenting DD's information and would be glad to turn it over to anyone collecting case studies.

[ptcgirl]

Back when my DD started with PANDAS (in Fall of 2006), there seemed to be an outbreak in the Southeastern part of the US. I remember when we took her to Emory to have an MRI the doctor mentioned that there was an unusual strain of strep that didn't respond to category 1 abx and that 20% of the kids needed a catergory 2. What is odd is there seems to be another strain this fall. I've heard of SO many kids that are popping up with sudden onset OCD this fall or having very major flares (for those already with PANDAS). I am really wondering what is out there right now....

[HT's Mom]

Hi there,

Been there, done that too with my now 17 yr old. Battling since age 4-5, didn't diagnose until 11. All good from 11-15 after treatment with penicillin /augmentin. Then Bam. OCD/ tics back again.

 

It sounds like you are on top of things and all advice given here I would reiterate. I would only add to be VERY open to IVIG treatment early as opposed to waiting and treating solely with abx. Dr. T and dr m will discuss this possibility with you, and your natural inclination might be to wait to see if abx work. But at her age there is reason to do this sooner than later. It's the one thing I regret not knowing earlier to do for ds, it changed everything. Dr k believes its an eventual necessity for most, especially older kids.

 

Good luck!

Edited November 9, 2012 by HT's Mom

[kos_mom]

I think Dr. L is a bit quicker with IVIG as well. But she often suggests T and A first. Perhaps would not in this case as Surfmom says her DD has been a picture of health up to now. I think Dr. B in Connecticut is also quicker to do IVIG.

[SurfMom]

Update:

 

We treated DD with 875mg amoxicillin for ten days starting Nov. 15. She was back in school a week later. On Nov. 25, her second exacerbation started and of course our doctor was on vacation so the second put her back on amoxicillin for 30 day even though I pushed for a different abx. now six days into it, she is still symptomatic though they are not quite as bad as they were the first round. At her diagnosis, her ASO was 874 now, it is 304. We are calling Monday and getting her in to see her reg doc. immediately. We are in the middle of intake process with Dr. M.

 

On Friday her temperature became a little elevated so we took her in for a CBC to check for possible viral infections.

 

Question. Have any of you taken to your child to a neurologist locally to work with your child with any success?

 

Any suggestions for her family doctor? Am I probably right at this point to be pushing (again) for augmentin?

[kos_mom]

SurfMom,

I would push for augmentin with your pediatrician. Is he open to prescribing for more than the usual ten days? I wouldn't bother with local neurologist unless you can verify he or she has treated Pandas patients before (the front office should be able to tell you). In my area another reason for not bothering with a neurologist in the situation you are in--where you want immediate treatment--is that it can take weeks/months for a new patient appointment. I know you are in the process of intake with Dr M, but if it will be some time before you can get in and you can't get abx from your pediatrician, I would consider a phone consult with Dr. T.

Ko's Mom

[michiganpandas]

Get on a different antibiotic....be open to ivig now....we are still dealing with crap left over from PANDAS from our totally daughter (who sounded just like yours...very outgoing and then bam! hit with strep)....We also figured it out right away (I googled strep and ocd and figured it out), but I was stupid enough to believe the doctors to not listen to the stuff on the internet....I waited way too long to pay the money to see Dr. T....should have done that in the beginning....don't mess around with anything and treat aggressively now!

[MomWithOCDSon]

If augmentin helped her initially, I would try to get back on that. But push for a 30-day prescription, if not more. Anecdotally, I think that older kids, especially, benefit from longer abx courses. Maybe because they've been carrying around the bacteria longer before the negative results boiled to the surface? In my DS's case, because he'd faced strep previously for years only we didn't know it because he was classically asymptomatic, we're pretty sure the strep had colonized in his sinuses and created ongoing issues for him.

 

Unfortunately, we have not found a neurologist in our area who would take PANDAS seriously, especially with some of my DS's characteristics and health pattern not following the older, more strict criteria of the NIMH. I know there are a few out there who support the PANDAS/PANS diagnosis, but it is somewhat rare, I think. Look for a referral or recommendation, either here on the Pinned Threads or on other sites like pandasnetwork.org rather than going blind into an appointment.