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Help! Siblings both showing signs of PANDAS around the same time?


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Anyone have two children present with sudden onset of vocal/motor tics around the same time?  See my post in the Tourette's board:  "Sudden Onset of Severe Complex Motor/Vocal Tics " I posted just this past weekend regarding my daughter.  The night we came home from the hospital with my daughter, my 10 year old son came out of his room screaming that something was in his ear and biting him. I looked in his ear and could see wax and signs of an ear infection (he remained adamant that something was in his ear the full night); I took him to his Dr. the next morning, she agreed he had an ear infection and started him on antibiotics. That evening my son started jerking his head to the affected side of the infection, and making an "AH!" sound every few seconds.  My daughter also has a similar tic, both motor and vocal and at times, they were both making the exact same movements/sounds at the exact same time.

At first I thought maybe he is stressed with everything, my daughter and I were away in the hospital for 2 nights, he probably is worried and concerned for his sister and how she has drastically changed, or maybe he is mimicking her for some needed extra attention.  But hat was 5 days ago now, and right now as I sit in my office typing this post, I hear my son in his room every few seconds saying "AH!" and I know he's jerking his head as he says it.  He also has regressed in his speech, he is doing a lot of "baby talk" and when I asked him about it he says he can't help it.  There is no way he is making himself do this, not to this extent.  I'd give up on that within the first hour if it was something I could control.

I feel like I am losing my mind! I cannot believe all of this, how sudden it is, and that whatever this is, it is effecting two of my three kids! Our house feels like a circus!

My son had 3 or 4 strep throat infections this past spring, but aside from his current ear infection has been healthy.  My daughter has had several colds leading up to her symptoms, but no strep as far as I can identify.

Aside from my daughter having vocal and motor tics that suddenly appeared over the last few weeks, she hasn't had any personality changes or sudden onset of OCD or ADHD.  She has a long history though of having sensitivity to fabrics, tags on clothes, the way certain pants feel; she has an attachment to a blanket she has had since infancy that she is almost codependent with and cannot be away from and also finger sucking that I cannot break her of (she's 12) and she is obsessive with collecting random objects (mostly containers, toilet paper rolls, and random pieces of cardboard)  but these are not new issues for her.

My son, aside from the speech regression currently, no signs of OCD or ADHD, though he has been a long time bed wetter. But again, that isn't new. I will say he has been missing more school than normal due to a lot of headaches, but I am not sure if that relates to anything or not.

Both have struggled with school for a long time but are at grade level and no new regression has been noted. No personality changes in either one. 

I am just trying to make sense of all of this. Everything keeps pointing me back to PANDAS but I am not certain that completely fits either, especially now with both kids ticing...

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Wow! I’m really sorry. That sounds completely overwhelming and awful to have to deal with. One child being sick is hard enough, but two at the same time? I have one PANS child—I can’t imagine if his sister starting exhibiting symptoms, too. 
 

Have you had blood work done for both of them? Three or four strep infections is raising a red flag. I’m assuming you checked for strep again this time? Have you checked myco p? Is Motrin providing any relief? Is there a PANS specialist in your area?

Again, I’m really sorry—that sounds chaotic. Here’s hoping you find answers very soon.

 

 

 

 

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  • 2 months later...

I don't have any answers, but wanted you to know that I read it and I am sorry that you are dealing with this.  I have one teen who started complex motor and vocal tics in January and it can all be quite scary.  

 

We are currently looking into mold as a possible trigger.  But we ruled out any strep infections with antibodies.  I hope the PANS PANDA folks can help you more.  

 

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  • 2 weeks later...

I just wanted to update that our college age sibling, let us know last Friday that she had some small simple tics show up.  So I also have siblings with tics within two months of each other.  She was home to support sibling twice during the two months, both times when the home improvements were happening (possible mold exposure) and in addition she had a peg 3550 exposure (main ingredient in miralax), but hers was from the moderna vaccine.   Neither sibling has ever responded to a vaccine before.  

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