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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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Hi, I haven't posted in a while. Its been 14 months since PANDAS invaded our lives. I can say my DD9 is about 50% back. We are having major issues with behavior. She doesn't listen and fights with us all the time. She is on Zoloft 50 mg but I don't see that helping anything but her anxiety. She is also on Strattera 40 mg which is also not doing much good and Pen V K 250 mg. BID. She was good for a few weeks but she seems to be going backward with her symptoms. So anyway her ID doctor said have her Adenoids checked. She said they can hide strep. Has anyone heard this? And is it worth it to get a tonsillectomy if she doesn't get strep often? And anyone who did a tonsillectomy has the PANDAS symptoms decreased?

Thanks so much, Kari.

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Hi Kari~

My two PANDAS kids don't seem to get strep often, but we are still having issues with behavioral symptoms/rages/defiance too. When I spoke to our PANDAS doc about considering IVIG he actually recommended getting the tonsils/adenoids out first. He thinks it would really help. I have heard that they can hide strep. We are in the process now of trying to figure out our next step.

I have heard some stories of it really helping, but I have also heard some stories that it made things worse.

I am glad you posted this. I look forward to what everyone has to say :)

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Hi, I haven't posted in a while. Its been 14 months since PANDAS invaded our lives. I can say my DD9 is about 50% back. We are having major issues with behavior. She doesn't listen and fights with us all the time. She is on Zoloft 50 mg but I don't see that helping anything but her anxiety. She is also on Strattera 40 mg which is also not doing much good and Pen V K 250 mg. BID. She was good for a few weeks but she seems to be going backward with her symptoms. So anyway her ID doctor said have her Adenoids checked. She said they can hide strep. Has anyone heard this? And is it worth it to get a tonsillectomy if she doesn't get strep often? And anyone who did a tonsillectomy has the PANDAS symptoms decreased?

Thanks so much, Kari.

 

I would absolutely get the tonsils/adenoids checked. I got T/As done on both my kids in November. The ENT said older one's tonsils "were the most disgusting things he'd ever seen" and were oozing pus.......none of this was visible to anyone who examined her preop. she was also diagnosed with pandas, although her symptoms were almost always those of severe chorea. I would say that if you do go for the t/a, you should really check into making sure that they give your child follow up abx and prednisone. mine got a severe exacerbation of motor tics/chorea afterward, which dr. t said was probably from bacteremia following the surgery. she is fine now, having undergone pharesis in march.

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The worst I have heard is that you get a reprieve---symptoms definitely get better, but a return say, after a year or so. On the other hand, I have heard good, lasting results. All anecdotal. We are off to an ENT for our 16(near 17)yo daughter that had adolescent variant of PANDAS dx'd 1 1/2 years ago. She has had titers so high when we started to unravel what was going on with her. 7500 AntiDNase!! Anyway, she had been on a boatload of abx over time. She came home from a conference this last weekend--getting sick. Long story short-I fell over when I looked in her throat. The nastiest strep throat I have seen, and the only bonafide one she has had that I recall!!! We requested an ENT. SHe may be why we are having trouble with our PANDAS/Lyme son. She is doing much better overall on the Cefedil. I am guessing her tonsils and adenoids, & sinuses are a hang-out for the strep. Those who have followed our case have been aware of our family's ridiculous titers that left doctors going Huh?? & Mayo recalibrating their equipment because our results were so high. DD16 has seemed to be the holdout getting the titer levels down. I'll keep you posted on what happens. Appt the 29th.

 

Dawn

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My 15 y.o. PANDAS son got tonsils and adnoids out at age 11. Best thing we ever did. He was constantly getting strep that year and his PANDAS was at its worst. He stayed on full strength antibiotics (augmentin) for several weeks after and then went to a low dose and has been there since. He has never had another strep infection and has done very well since. He still has occasional mild flares when he gets a cold or when one of the other kids are sick but over all, compared to where he was at age 11, he is doing well. I do think it is important for them to be on a full strength antibiotic for a while after surgery. It only makes sense that it would release bacteria into their system. Also, because he is a PANDAS child, his PANDAS doctor says it is important for him to maintain a low dose antibiotic until around age 17. He only takes amoxicillin 250mg twice daily, which is pretty mild compared to what some PANDAS kids take. All kids react differently. I hope you have a positive experience.

 

Dedee

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My PANDAS dd9 was definitely a case of strep hiding out in the adenoids only. She had only 1 positive throat culture, but elevated ASO (2000+ at it's highest). She was showing no signs/symptoms of sore throat/sinus infection, but during a routine follow up for one of my non-PANDAS children I mentioned our situation to the ENT and he recommend we x-ray her sinuses just to rule out a hidden sinus infection. We did and sinuses were clear, but adenoids were extremely enlarged. She had an adenoidectomy last June and despite being on prophylactic azithromycin for 9 months and full strength omnicef the month prior to surgery, her adenoids were still infected at the time they were removed! Following surgery she had a good 5-6 months with no PANDAS symptoms, then she had a slight blip when 2 members of the house had mycoplasma over Thanksgiving. Then things got worse again in February when she and both my other kids got strep. Unfortunately she hasn't fully recovered because one of my other kids just can't clear that infection...5 positive rapid strep tests in 5 months! Constant exposure in the house makes for a long recovery...thankfully my chronic infection kiddo is scheduled for tonsillectomy in July!

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