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Elevated ASO titer in mom of four PANDAS children


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WHAT DOES STREP DO TO THE TESTICLES???? Oh I need a vacation!!! "Calgon take me away!"

 

 

This is something he is just noticing a trend in families. We investigated titers on our own initially and I've been reporting back to him. My husband had some unexplained GI issues as well as prostrate pain. My father-in-law is also a Urologist and we heard too many horror stories about what strep can do to the testicles. Madeleine Cunningham felt my husband had shared the illness with our 3 children, etc. We opted to treat and ASO came down indicative of an active infection. He definitely said to focus on ASO being sub negative.

 

-Wendy

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As far as symptoms, I don't have any typical strep symptoms (no sore throat etc..), but I have been very tired and have had some skin problems that i wonder if it could be related to strep or be strep. For example, recently any cut I get or little pimple, seems to get infected. My oldest child has had a big flareup of PANDAS symptoms lately and I attributed it to the strep she was exposed to a ferw weeks ago when she was around her cousins who were being treated for strep, but maybe it is from me... I feel terrible that i could be causing this in my daughter.

My daughter is almost 14 and has been doing really well now for the past year and a half on daily Zithromax. Now she is having what seems to be panic attacks at bedtime. He pulse satrts to race very fast, she gets very scared/nervous/crying. This occured for a few weeks 5 years ago and never again until this past week.

 

So frustrating and heartbreaking.

Colleen

 

 

Colleen-

 

It sure sounds like the adolescent version of PANDAS thatour daughter was dx'd with in Dec. Go to Dr. K's webpage and read about the adolescent version. Our daughter fit it pretty closely. Anxiety is a major symptom. Dr. K put the symptoms together when our dd15's ADB came back at 5400. He asked if she had ANY anxiety. We started naming off some of the things her counselor and we were seeing, and she was experiencing--bingo. We had been passing it off as over the top stress in the house from ds11 with PANDAS. Has dd14 had PANDAS before and this is a flare up? (I am awful keeping track, please forgive.) Not sure I am of any help, but thought I'd chime in.

 

Dawn

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Our family of 4 is all high, although only DS9 is PANDAS.

 

We are trying to start abx tx for the rest of us.

This is something he is just noticing a trend in families. We investigated titers on our own initially and I've been reporting back to him. My husband had some unexplained GI issues as well as prostrate pain. My father-in-law is also a Urologist and we heard too many horror stories about what strep can do to the testicles. Madeleine Cunningham felt my husband had shared the illness with our 3 children, etc. We opted to treat and ASO came down indicative of an active infection. He definitely said to focus on ASO being sub negative.

 

-Wendy

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Dawn-

My daughter was diagnosed at age 5 and she will be 14 next month. We have had LOTS of ups and downs, but since beginning daily Zithromax, she has been doing really well. She was exposed to two kids with strep about 2 weeks ago and started with a flareup tweo days after the exposure. A few days later the anxiety began. I just read Dr K's piece on the adolescent variant of PANDAS and it definitely fits her. I have increased her Zithromax to 750mg/day and have added ibuprofen. Last night was a tiny bit better than the night before, so maybe it is working? I reently didi a phone consult with Dr T and I emailed him yesterday about trying a steroid burst or a few weeks of a tapered steroid dose, but have not heard back from him yet. We have never tried steroids with her before. Her last big flareup was 3 years ago and at thast time I did not know about using steroids to help with inflammation. I am hoping Dr T gets back to us soon. It breaks my heart to see my independent confident daughter cry her eyes out b/c she is so scared. I am terrified of anorexia also. She has shown zero signs of it, but when I was working as a psych nurse, I took care of many young ladies who were so immaciated from anorexia, they were in danger of dying. Just when I think I have a handle on PANDAS, it seems like everything blows up.

In one month we are supposed to spend a week at thge beach with family who have the two children who excposed my daugter to strep a few weeks ago. I think my niece and nephew (kids with strep) may have PANDAS, but my brother does not hink so. It is so hard to make him understand that I believe his kids still have strep based on my daughter's big flareup after spending time with them. I am like the crazy lady saying, "but I know your kids must have strep. How do I know? "...

 

Colleen

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