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Can PANDAS run in families?


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I have autoimmune Thyroid disease, and had Scarlet fever as a teenager. There is a history of Alzheimer's on my father's side, but he died too young to know if he would get the disease, too. I also have a brother that developed glomulorenalnephritis as a result of infection, not sure if it was strep. Two of my four sisters have Thyroid issues.

 

Cobbie

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In our case yes. My DD8 has PANDAS, my brother's daughter has PANDAS, my sister's son has tourettes but my sister says he has had since birth and won't get him evaluated. I have had strep way too many times to count, I actually recall my pediatrician telling me maybe 30 years ago that I am one of those people that probably has Strep living in their throat because my swabs were always positive. My husband has full blown textbook OCD (rituals, compulsions, and more - just a nightmare to live with by the way), I will admit I do have contamination issues - tonight I washed my hands at least eight times while barbecuing. My father has OCD, checking rituals, collecting, hoarding. We are figuring my 3 year old out, her strep titer thank goodness is normal however she has a different immune issue and has been showing signs of OCD. My DD has Lyme and my nephew just acquired it from a known bite. My PANDAS niece is being tested for Lyme and I will be surprised if she does not have it. I am wondering if there is a genetic vulnerability to Lyme too.

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2 daughters with PANDAS,

myself with dx. Of pediatric fibromyalgia from CHoP as a 13 yr old after years of strep and resulting joint pain, had tonsils removed less than one year later...resolved symptoms. No fibromyalgia symptoms now. lots of strep as a kid and teenager until tonsils out, although still getting strep.

My dad ....lots of sore throats as a kid, my grnadma describes him as a sick kid (only child) couldn't step on cracks of sidewalk...had to walk entire length again. Has OCD for as long as I have memories.

 

My paternal grandma....OCD which continues to this day at age 86

 

My sisters....one had some repetitive behaviors (blowing on hand, eye blinking tics) the other with joint pain and inability to walk t age 7 or 8 and continues to have some minimal facial and vocal throat clear tics.....both sisters like me with chronic strep.

 

Most definely its genetic.....dr.B told us at least 40% of siblings have it

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about 3 1/2 years ago when my then 7 year old daughter she is 10 now was dx with PANDAS I was wondering the same thing.. she is #3 of 4 children and after reading all about PANDAS I started questioning if my others kids could have had it when they were younger, cuz alot of the symptoms they had over the years growing up.. My oldest dd who is 16 now when she was 3 had a blinking winking eye tick they dx it as seizure activity and gave her meds for it, but she also had the mood swings. My oldest son who was 9 at the time is 12 now.. showed classic PANDAS symptoms all though out his life starting with the bad night terrors, sensory issues with sounds as a toddler, then when he was 4 or 5 had a throat clearning tic that the doctors said was allergies and started him on all sort of allergy and asthma meds, he had OCD stuff to around 6 or 7 but I didn't know anything about OCD or fears of that sort.. all these things always happened when he was sick or there after and I always marked them off to something like he just doesn't feel well.. So after learning about PANDAS with my dd I mentioned it to my doctor and he blew it off.. NOT the best thing to do.... Because Last Sept 2011 my 2nd child my oldest son got sick, I thought it could be strep the rapid came back neg they didn't treat him.. two weeks later he had the biggest change in personality ever. Extream fears, and an eye blinking head turning and throat clearing tick.. all of it came on over night.. then started running a fever and he test Pos for strep.. He has been in a major excabation since then.. antibiotics helped a little, steroids helped alot, In Oct 2011 my oldest child had walking penomia and that my my son and my PANDAS daughter symptoms flare... incress of antibiotics helped my PANDAS dd but my son was left with full body tics/movements he couldn't sit or walk, he pretty much spent all day laying on the floor flopping around like a fish out of water.. Steroids burst and then a steroid taper brought him out of the worst of it and left him with just tremors in his hands and some fears. then my youngest son caught the flu in March.. and my oldest PANDAS son got a fever at that time and it brough back OCD tapping, and the hand shacking started non stop and he had big body jerking movements legs and arms flinging out.. incress of antibiotics and more steroids helped but he was left with the shaking of his hands and his head flinging back like every other min. We have also tried alot of medications they use for torettes but nothing is helping... only thing that helps is steroids.. We just got insurance approvel for the IVIG.. He is having it This Friday and Saturday July 13th and 14th.

 

i guess my point is if you see symptoms of PANDAS and you already have one child dx with PANDAS I would say those symptoms mean your other child has it also... Our youngest child is 7 now and he too shows sings.. major agression and crying alot everytime he is sick, along with the dielated pupels He hasn't had any big time out break of it, like my two middle children have had where it changed their life and kept them from living it... but mild symptoms are there.. So right now anytime he shows any signs of being sick, we have him in the doctors asap getting him on antibiotics.

 

 

 

Does anyone know if you have one child diagnosed with PANDAs, how common it is for a sibling to have PANDAS as well? We have focused on our DS 8 yrs old and he has had IVIG for PANDAS which so far has been successful, but our 10 yr old DS has some classic symptoms as well. OCD, trouble in school, but he's been diagnosed with ADHD and on Rx. Wondering if we shouldn't be looking for something else??? DS 10 is seldom ill, had night terrors when he was 2-3 yrs old-still doesn't sleep well but has adapted. Bed wetting until about age 7 and immature for his age.

 

Just curious if PANDAS is common among siblings.....

Thanks!

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all my kids present differently.. my two with the dx of PANDAS my daughter biggest symptom was sensory where she couldn't wear her cloths cuz they were hurting her so bad to touch her.. she also had major fears and seperation anxeity.. no tics or anything like that.... My son had OCD checking and tapping major fears and intursive thoughts, eye blinking, head turning and throat clearning tics, then when he was exposed to MycoP it went into what looked like sydenham choriea movement and left him looking like a fish out of what..

 

My youngest son who is not dx but I see it in him.. crys at a drop of a hat, has big time agression and moodieness everytime he is sick or everytime he loses a tooth.

 

All three of them when symptoms are flared will have the big puplis.

 

We have 3 boys 9, 11, & 12. Severe overnight dysfunction with the oldest boy. After much wasted time before hearing the word PANDAS. Found Dr L....she asked about the other 2 boys. We mentioned things that were very different than each other (one with night terrors and uncharacteristic baby talk and the other with head and vocal tics). She floored me when she said that 70% of her patients were sibblings and that they each present differently. She had us test them all and do cunningham's tests on all 3. Low and behold ....all 3! Oldest is complicated because he went untreated longer & has had several IVIGs but still a work in progress. Other 2 ( knock on wood) are steady with antibiotics alone.

 

Linda

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