PANDAS for older kids

[TxPANDAMom]

I am the mother of a daughter with PANDAS. Symptoms started in October 2008 - FINALLY got a diagnosis in November 2009. One of our biggest

problems...she just turned 21!! How many parents are out there with OLDER PANDA kids....We live in Kingwood, Texas...about 20 miles from one of the largest and most well known medical centers in the country...we are being TREATED by a doctor in Illinois....all they could tell me in Houston is what she did NOT have. It seems no one down here has heard of PANDAS, and 99% of the information online states that it is a pediatric disease for infants to puberty..I am here to tell you it is NOT just for little kids and it really worries me all of the teens and young adults who have probably been missdiagnosed and are probably now on some really hard mind altering drugs or worse. HOW CAN WE GET SOME STUDIES STARTED FOR OLDER KIDS..We would volunteer! How do we get more doctors interested in PANDAS....WHY do some denie it even is a real disease?? After starting my daughters treatment, we have seen MAJOR improvements (the antibiotics and IVIG)..I feel if there were just more studies and more exceptance, this whole process would be at the least, cut in half and she could get back to a normal life...it is so sad that at this point in her life when she should be out in the world with great things ahead of her, we are dealing with this...

[melanie]

Hi

 

I agree My son is 16 and were in NJ

 

Welcome (I guess)

 

Melanie

[NMom]

TXPandaMom -

 

I have a younger son (6) that was diagnosed with PANDAS this summer and we live in The Woodlands, TX. We saw a great psychologist in Kingwood in case you need someone who specializes in OCD. She is now very familiar with PANDAS after treating my son. We also have had no luck finding a dr. in TX and my son is treated by Dr. Latimer in Maryland. There are many PANDAS cases around here and we started a support group here in The Woodlands. Feel free to PM me if you want details.

 

Rachel

[TxPANDAMom]

TXPandaMom -

 

I have a younger son (6) that was diagnosed with PANDAS this summer and we live in The Woodlands, TX. We saw a great psychologist in Kingwood in case you need someone who specializes in OCD. She is now very familiar with PANDAS after treating my son. We also have had no luck finding a dr. in TX and my son is treated by Dr. Latimer in Maryland. There are many PANDAS cases around here and we started a support group here in The Woodlands. Feel free to PM me if you want details.

 

Rachel

Thanks for responding - Who did you see in Kingwood? and are you still using her?

[airial95]

I may be wrong - and one of the veterans on here will correct me if I am - but I think one of the biggest challenges we have in the name is that the "Pediatric" means Pediatric onset. The symptoms typically start somewhere in childhood or adolescence but by no means does it remain a childhood disease. That tends to be a point of confusion for some doctors who are non-believers or aren't familiar with the condition. There are a few folks on here with older kids at both onset and treatment - so I don't think you're alone.

 

As for why there aren't more doctors, more studies, etc... you're speaking to the choir here! I think we've all expressed that frustration at one time or another!!! I have repeatedly offered up my 3 year old for a weekend when he's in full exacerbation to any Dr who truly doubts this disease doesn't exist!!!

[Kay]

Daughter 19 soon to be 20 dx with Pandas December 2009. Large exacerbation at 17 one that made us stand up and take notice. In researching since then we have found that she probably had issues much younger, but nothing that interfered with her life at all and did not really kick in until exposure to strep at 17.

 

High Mycoplasma Pneumonia titer Igg. No high strep titers. Cunningham test camK 174

 

Also was ill after a vaccination at an early age. We are not sure where this all began can only guess.

 

Treatment so far has been abx. Lower dose Augmentin in the beginning also tried Omnicef. Both worked well, first dose of Augmentin really cleared a lot for her.

 

Now on Augmentin 1000xr and also just finished 28 days of Biaxin for the Myco P.

Edited September 28, 2010 by Kay