Jump to content
ACN Latitudes Forums

Can PANDAS run in families?


Recommended Posts

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!

Link to comment
Share on other sites

Yes, it can run in the family, just like other disorders can. Dr. L. was the one to tell me to have a second child evaluated after taking family history on the first child. She said it happens.

 

As with your ds, my dd is not as clear-cut as the severely affected child, but I'll trust the expert to tell me how to proceed. I wouldn't give it another thought--set up an appt for your ds.

Link to comment
Share on other sites

I took my DS to Dr. L and she also told me to check DD--she asked lots of questions about her while we were there, although DD is not classic presentation. When we took DS to ENT Dr. L recommended--Dr. H--he said he is getting a fair amount of siblings seeing him for PANDAS.

Link to comment
Share on other sites

I have 3 with it and probably a fourth. I know two other families (one with 3 and one with 4) affected. I can think of three I know personally off the top of my head with 2.

We had one sudden (overnight) onset, another sudden onset 18 months later and the third developed vocal tics a few months after that. OCD and fears came a few months after the tic-only onset.

These three are all treated by Dr L, ivig, steroids, abx and pex & two are in ERP therapy and doing much better these days!

The fourth is a little less clearcut, though much better post steroids. She is only 4, so we are watching closely.

When I first heard of a family with 2 kids with this "rare" disease, i will admit I was skeptical. When my second PANDAS child developed sudden onset symptoms- I truly did not believe lightening could strike twice.

You are in good hands with Dr L.

Link to comment
Share on other sites

I believe Dr. M has published on this. If I remember what she told me correctly - there is a high probablitiy of iPANDAS in siblings particularly in families where there is a history of chronic strep, rheumatic fever, or other autoimmune conditions. I think it increases more when the history is on the mothers side. (I remember the mother part particularly because thats our case and it helped justify my mommy guilt over this :P)

 

My daughter was dx last year, but suspected for a while prior. Initially a mild case and all symptoms would resolve with a standard dose of abx. She took a bad turn in February, and has gotten worse with each infection since...but she's still not even close to being on the same level as my son.

Link to comment
Share on other sites

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

Edited by 3boysmom
Link to comment
Share on other sites

I believe Dr. M has published on this. If I remember what she told me correctly - there is a high probablitiy of iPANDAS in siblings particularly in families where there is a history of chronic strep, rheumatic fever, or other autoimmune conditions. I think it increases more when the history is on the mothers side. (I remember the mother part particularly because thats our case and it helped justify my mommy guilt over this

 

I think there was a discussion awhile back on this forum about this, but I would love to take a poll:

 

Of those with PANDAS kids, how many moms have autoimmune issues themselves?

 

I myself (DS14 with PANDAS) have had autoimmune symptoms for years - was even worked up for Lupus at one point. Never had a a formal autoimmune dx until last year when I was dx with Hashimoto's Thyroiditis.

 

Would be interested to hear of other's experiences.

Link to comment
Share on other sites

It is strongly believed by professionals and myself that I had PANDAS as a child. I am sure that I am the genetic link to my son having PANDAS and I know of many, many families w/more than 1 PANDAS kiddo. In addition, my long RF, SF family hx reports at least 2 members, 1 and 2 generations back, who "were never the same after they had RF"...hearing about the reported symptoms, I read betw. the lines, likely recurrent Strep and PANDAS.

Link to comment
Share on other sites

Hi - yeh, 2 kids here, classic dd and not so classic ds. RF and Crohn's in my aunt, my sister has polymyalgia rheumatica, my mom has mild rheumatoid arthritis, I'm hypothyroid. Also got RF on dh's side.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share

×
×
  • Create New...