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PANDAS in families


JPdad
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The more I read here, the more it seems that PANDAS often occurs in siblings. I have a 5 year old son with a PANDAS diagnosis, and am wondering what are the odds that my 3 year old girl might develop the same over time? I also have a 15 year old step daughter who is symptom free.

 

I'd be interested to see how many kids each of you have and how many of those kids have PANDAS.

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I have 2, and both have a PANDAS dx. My youngest was dx first - with onset at 20 months and dx at 26 months old. His sister was suspected PANDAS last year (if you search my past posts, you can see my musings as to the liklihood). She was dx last fall at 5 years old.

 

Dr. Murphy has noted that there is a high occurance in siblings particularly where there is a family history of rheumatic fever or autoimmune disease.

 

On a side note - my daughter presented VASTLY differently than my son has. And if it wasn't for a significant bed-wetting episode last summer, would likely have gone longer undiagnosed. So be aware that just like it looks different in all of our individual children - those differences carry through families as well!

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My DS presented at age 6 - dx at 8.

 

Heading to Florida with DD next week for Dr. Murphy study - presented in May (she is 5) - no offial dx yet. DD also presented a bit different than DS.

 

My maternal grandmother had Parkinson’s, my paternal grandfather had Alzheimer’s, my father-in-law has Lupus, my sister was just recently diagnosed with crohns disease and my husband has mild ITP.

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Hi- I have 2 kids. Ds4 and dd9 both PANDAS dx (really PITANDS as they can flare to varying triggers, even an acute allergic reaction to a food once for dd). They both present very differently. We have experienced one flaring while the other not but also at the same time, eg they will both start ticcing within hours of each other.

 

We have Crohn's, polymyalgia rheumatica, RA, RF, Alzheimer's, diabetes Type 1, Celiac and thyroid issues in the family.

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2 for 2 here, although the younger milder, probably because we were all over it with first impetigo. She didn't have strep for 6 months like my oldest dughter that we couldn't get rid of. Family history ...myself , my sisters and my dad. Reason why we never had a third child.

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I have three children. All three have PANS. Like others have posted, all of mine present differently and one was hard to identify because she reacted to every illness that came through the house so she seemed more chronically ill. But now that we are getting treatment for them all it is obvious that they are all infection triggered. I know I shouldn't worry too much about the future but I worry so much about their children and whether this will be passed on to the next generation.

 

Dedee

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My DD10 has PANS reactions to strep and viral infections, and regressed severely with her 15 month MMR (lost speech, gross and fine motor). She has been Dx with lyme/bartonella, the LLMD thinks she has congenital lyme. I was very stressed at the time I was pregnant with her but not so with DS15. DS15 seems to have no problems.

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My DS presented at age 6 - dx at 8.

 

Heading to Florida with DD next week for Dr. Murphy study - presented in May (she is 5) - no offial dx yet. DD also presented a bit different than DS.

 

My maternal grandmother had Parkinson’s, my paternal grandfather had Alzheimer’s, my father-in-law has Lupus, my sister was just recently diagnosed with crohns disease and my husband has mild ITP.

 

 

Can you explain to me the process in getting in with Dr. Murphy? Is it just one appointment or a series of appointments?

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My 11 year old would be PANS, my 8 year old PANDAS and my 3 year old PANS.

 

We have tons of autoimmune in my family-- Type 1 diabetes, Fibromyalgia, Thyroid, Celiac, Autoimmune Neutropenia

Edited by Tattoomom
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I suspect that your FIL and maybe your sister might be helped by ruling out infectious triggers (such as Lyme, Strep, Staph, viruses, etc.)

 

Also, both my children have PANS (turns out that there are lots of infectious triggers that they have...we first noticed with strep with my youngest, and my oldest has Asperger's, but many of his Asperger's symptoms improved tremendously with abx and then PEX/IVIG. My oldest was not dx until 15, but he probably had it since he was a baby (and maybe from birth.) Also, both present vastly different.

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