For those of you with more than 1 child with PANDAS

[AmySLP]

My nearly 6 year old daughter was dx. with PANDAS nearly 1.5 years ago by Dr Latimer. She showed such remarkable improvement on ABX that I really questioned if she had PANDAS, b/c her symptoms were pretty mild in comparison to others and she was young (3 yrs, 10 months at onset of symptoms, with Diagnosis at 4 1/2). Anyway she had a major exacerbation this year after much strep in her Kindergarten classroom and her 3 y/o sister having strep infection of the skin (impetigo). Currently she is being followed by Dr. Bouboulis and is 95% symptom free on Augmentin ES 6oomg BID for 5 weeks now. This brings me to my nearly 3 1/2 year old daughter. We mentioned to Dr. B last month that we were beginning to question if she also had PANDAS, in the very early stages, or was it her age, temperment, birth order etc, etc. Dr. B told us to make an appt for her this month and ordered the same panel of lab work. Anyhow there were labs that were elevated and in combination with behaviors (sensory integration problems, emotional lability, meltdowns/rages, separation anxiety/fear of being alone) makes for a compelling case. He recommended trying her on the same meds and tracking her behaviors-he really feels that she has PANDAS as well.

 

I am really having a hard time accepting this. I have been more vigilant, noting her behaviors, but really trying hard to write them off as just that, "behaviors." To hear a doctor say there is enough compelling evidence for PANDAS, is hard to digest. Did any of you feel you were trying to deny that this existed in your other children? I will start her on the meds tomorrow when I fill the RX, as we just arrived home from CT. I have such mixed feelings about it~yes, it's be nice to get her behaviors under control if they are due to PANDAS, but to think of going through this with another child is just heart breaking. I'd love to know how the diagnosis was made and what your feelings were on subsequent PANDAS dx. in your other children.

 

Thanks for all your support. This forum is truly a blessing.

[Suzan]

My situation is different as my girls are 14 months apart in age and they both got pandas I now believe at a very early age so they have always shown strange behavior. That said, I think it is normal in the early stages or with mild episodes to question whether it is normal behavior or pandas. I do it all the time with my two girls and question the path I am taking, even though I know I'm on the right path.

 

I am sorry that you find yourself in this situation with both your daughters now. I am glad it is caught early and hope it never develops into anything serious. I agree, it is heard breaking. Big hugs to you!

 

Susan

[Megs_Mom]

I only have one child, , so I can't answer your question - but I will just say how sorry I am that you may be dealing with this in 2 kids. I honestly can't even imagine having another healthy child when going through all this. I always wanted 3 and thought maybe I only got one because I was going to have such challenges. Now that I have met all of you, I know that is not true.

 

Our daughter also had a very short initial onset at 3, and a long remission for 3 years before the more severe, longer exacerbations. I doubted myself for a very long time, still do sometimes. I think that is really normal! It is SO hard to have a disease that shows itself in behavorial manifestations, rather than physical.

[JAG10]

Hi Amy,

 

I can relate! I'm taking dd10 for a follow-up appt to Chicago in two weeks and bringing dd7 with us for that very reason. She too has highly elevated titers, but her symptoms are so much milder, it's hard to tell..... what are the results of being raised in the chaos of a PANDAS household your entire life? We're getting ready to re-run her lab work before we go, but I'm dreading it! NOTHING resulted in more anxiety for dd7 than having her blood drawn!

 

Are you going to ASHA in Nov.? If so, we should get together!

Jill

[P_Mom]

Hi Amy!

 

I am sure you know I have two PANDAS boys. My youngest manifest in August 2007, and, just when he was getting better (it was a horrible episode that we barely made through), my older son woke up one day in Sept. (the 17th) with multiple motor tics. As you can imagine...I thought I was going to die!! This was after the same strep infection. But, what can you do? We were "fortunate" in a way that my younger son manifest so badly, because it is VERY likely my older son would have been misdiagnosed with a tic disorder, perhaps even TS. (Dr. T said he would most likely have been given the TS diagnosis) Anyway, we started treating them both then......we struggled about treating my older son because, compared to my younger son, he wasn't really that bad....tics are easier to deal with then the ocd/anxiety/ hallucinations, etc.(as long as they are not debilitating) But, in our hearts, we knew we had to. Looking back, I KNOW we made the right decision, and, I believe the treatment did indeed keep things either absent or very mild for him, and, I believe we very well may have missed the TS diagnosis by treating. Another "positive" side.....both kids are on proph. antibiotics, so, you don't really need to worry about one bringing home strep to the other.

[AmySLP]

Thanks for all your support. My little one started ABX yesterday, so the waiting game begins. I think it will take a change in her behaviors for me to believe it's PANDAS and not age or temperment. Deep down though I feel that without treatment, she'd wake up one day with the same tics, choreiform movements, and OCD that we saw in our oldest when she was almost four.

 

I do feel like a nurse doing the "med pass" several times a day with ABX, vitamins and probiotics to both girls-the good news is that my kids love medicine so they gladly stop playing to come get their meds.

 

Thanks so much for your support,

Amy