Is it X-linked? What is the pattern in your family?

[Suzan]

Susan, You probably already know this but just in case, hashimotos encephalitis presents very similiar severe symptoms as PANDAS.

 

Mine is Hashimoto's Thyroiditis which I believe is related but not the same. I got it when I was 29 when I was exposed to disel fumes (at least we think that is what activated my immune system in this way).

 

Susan

[nevergiveup]

I think it is a severe case of your autoimmune condition. Thyroid antibodies run amuk. Its my favorite line to docs whom are non believers in the immune system causing antibodies that cause movement disorders and ocd. I just mention hashimotos encephalitis and lupus and they are suddenly thinking a little harder and more open to searching for physical solutions.

 

date='Dec 14 2009, 01:05 PM' post='48636']

Susan, You probably already know this but just in case, hashimotos encephalitis presents very similiar severe symptoms as PANDAS.

 

Mine is Hashimoto's Thyroiditis which I believe is related but not the same. I got it when I was 29 when I was exposed to disel fumes (at least we think that is what activated my immune system in this way).

 

Susan

[Fixit]

this is one of the questions i put on the other board...(mother's thyroid

 

could my husbands side with with the tic and his mothers thyroid and lupus and ezcema and allergies, been triggered by my not knowing i had hashimoto's till after he was born...

i was on thryoid med after that with the other 2

[thereishope]

I started a new thread with the study info in case others would be interested.

 

 

This is consistent with x-linked dominant transmission as well. Only mother to son transmission. No father to son transmission.

 

I would love to have the info for Dr. Geller. Thank you.

 

I'll just tell you history...

 

-1 of my sons has PANDAS. I also have another son and a daughter. So, far they seem in the clear.

-As I look back at my own childhood, I wonder about myself. Tonsillitis 5+ times a year, OCD tendencies as a child. Other PANDAS type issues. Just makes me wonder.

-My maternal grandmother almost died from strep or scarlet fever pre-antibiotics era

-autoimmune disorder run in my maternal family

-Other OCD spectrum disorders with my maternal cousins. Their mother is my mom's sister

 

If you'd like Dr Geller is doing a PANDAS genetic study. If interested in participating, I'll pass on info. My son is too young to participate.

[Kayanne]

I'll just give history too...I keep trying to wrap my brain around the "x" thing...and it isn't going there

 

My Grandmother and Uncle on my Mother's side both had RF

 

My husband has a diagnosed anxiety/panic disorder--and has some OCD tendencies---two drs who we saw recently about our PANDAS child seemed to think he may have facial tics. He is one of nine siblings...many have OCD tendancies, and anxiety is a common thread with them...even his parents. One of his sisters had a sudden handwashing compulsion that lasted for several weeks when she was young.

 

We have four children:

 

Daughter 8 yrs old

Daughter 6 yrs old -- She has PANDAS

Son 4 yrs old

Son 2 yrs old

 

I'm not fully convinced that my other kids don't have a very slight PANDAS....but, when strep attacked my house, I believe that the other kids' treaments were enough to keep it away...maybe only allow silght behavioral issuses.

 

PANDAS daughter's strep was not treated properly in the beginning, and I believe that is why she had a full-blown episode...although...I think it was more mild compared to many on this forum...but she was already being treated with antibiotics before the PANDAS behaviors surfaced, so I don't think it was allowed to get really bad....many severe cases that I have read usually have the PANDAS behaviors surfacing prior to the strep being treated.

[pixiesmommy]

Dr K believes that it follows the mother's side, as is the case with most other autoimmune disorders, from what I can tell.

 

Both my great-grandparents (maternal) had debilitating arthritis from very young age

My maternal grandmother has severe asthma, allergies, psoriasis/eczema and arthritis (rheumatoid I believe as it is disfiguring)

My mom has Lupus and childhood issues with mono, severe anxiety and OCD, her sister has thyroid probs, her brother has asthma but no other issues

I have something (diagnosed as Fibro, but recently had chiro tell me he thinks it's Hashimotos), childhood issues with strep, mono, and chronic sinus infections

 

I have two dd's, one diagnosed with PANDAS. Her bio dad has OCD and addictions, but I don't know his childhood history with strep, etc. as we are not in contact.

[Worried_Dad]

BTW - at one point when she was gathering PANDAS case studies on behalf of Dr. Leckman at Yale, I believe Diana P found that 19 of 20 PANDAS survey respondents indicated that they had a history of autoimmune disorders in their families!

 

So doesn't seem to be much doubt that there's a genetic autoimmune vulnerability in these kids.