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Keira, that's what I'm afriad of. The doc said there were no pits which would indicate a problem. Daughter never complains about a sore throat, but I remember chronic strep when I was a child. Had to get mine lanced before removal as I had almost a form of lock jaw, where I could not open my mouth they were so swollen...

My ds only had one ever strep infection, the one that started Pandas. Pandas kids immune systems do not react the same way a typical kid's does, so you just don't know what's in those tonsils (and adenoids) until they're out and cultured and as long as there's infected tonsils in there, will keep making antibodies and triggering pandas symptoms.

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Keira, that's what I'm afriad of. The doc said there were no pits which would indicate a problem. Daughter never complains about a sore throat, but I remember chronic strep when I was a child. Had to get mine lanced before removal as I had almost a form of lock jaw, where I could not open my mouth they were so swollen...

My ds only had one ever strep infection, the one that started Pandas. Pandas kids immune systems do not react the same way a typical kid's does, so you just don't know what's in those tonsils (and adenoids) until they're out and cultured and as long as there's infected tonsils in there, will keep making antibodies and triggering pandas symptoms.

 

 

THat's kind of the dilema I'm at with dd12.

 

She only had the one strep infection (that we know of) when PANDAS became full-blown at age 7.5 (finally learned about PANDAS and insisted on a throat culture, her sister was positive too). She likely had untreated strep infections previously (lower grade pandas) as all fevers were presumed viral by her docs.

 

So now she's had 3 HD IVIG's, and has been on 250mg/day Azith and 10mg/day prozac since 2008. I think something is missing. She is pretty good, but not 100%. She still has some OCD. Her anxiety spiked when we tried to wean off prozac. She reacts to non-strep illnesses. She had an exacerbation after something unknown (sleepaway camp)...so PANDAS is still going on, but under control.

 

Her tonsils "look" normal, but I hear so many stories of T/A removal of "normal looking" tonsils that end up being pitted/infected with weird stuff.

 

 

It seems that both Dr. Latimer (per the IOCDF conf.) and Dr. T. are now recommending T/A (for most PANDAS kids) even prior to IVIG.

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But what kind of doc will take themout it they "look ok." Do you have to explain PANDAS to them,and they look at you like you are crazy?

 

yeah...good question

 

Where do you live?

 

Well my ENT didn't know much about pandas but deferred to my local pandas neuro who recommended it. Once he did the surgery and saw how bad they were and then the pos cultures, no-one was more surprised than him! I think he just put in his notes, "removing for pandas symptoms, cannot guarantee T&A will help symptoms". I've since started a local pandas support group with two other moms (similar stories with infected normal looking tonsils) and we're compiling alist of local pandas friendly ENTs! If you're consulting one of the pandas specialists, you might enlist their help in convincing the ENT. That's what my other coordinator did, she got Dr T to speak with ENT and now that ENT is more pandas aware and willing to pull normal looking tonsils on all the kids we send his way! Parents have to take the lead and push for what you need! Pull any research documents off Dr T's website regarding pandas and tonsillectomy to give to ENT! PS I'm in AZ area.

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Thanks for all the info again! I am so thankful for you all! I am looking into T and A....feels like deja vu because we considered this thoroughly over a year ago....but I wonder if it is a missing piece of the puzzle for her.

 

yeah...me too

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Does anyone know why NIH docs don't recommend T&A, especially when Dr. L does-- since it seems like her treatment decisions tend to align to the trends coming out of there, or what people hear from Swedo?

 

My guess is the NIMH has to thread carefully with what they recommend, as is the case with regards to vaccines also. They can't go around telling everyone to pull normal looking tonsils without enough evidence to back it up! Just like they couldn't rec. IVIG and abx until the initial studies were done to show some effectiveness and now they are repeating those studies on a larger scale to provide more evidence! Perhaps in the future, the next area of research would be the T&A and examining the tonsils post-op for infection? So all we as parents have to go on in the meantime is what the front line Drs are recommending and seeing in their patients!

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We did PEX at CHOP for my daughter, who was 11 at the time, a little over a year ago. It completely got rid of her tics/chorea, and was noticeable by the 2nd treatment. She has been symptom free since (over a year ago).

We had tried just about everything before that, including tonsillectomies on both of my kids. Their tonsils also looked normal, but were riddled with puss when removed.

 

I would do it again in a heartbeat. It was the only thing that worked. We did not do IVIG at all, and no one even suggested it. She is still on zithro 2x/weekly, they said for at least another 8 years or so.

She was dx'd with Pandas and Sydenham's chorea.

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We did PEX at CHOP for my daughter, who was 11 at the time, a little over a year ago. It completely got rid of her tics/chorea, and was noticeable by the 2nd treatment. She has been symptom free since (over a year ago).

We had tried just about everything before that, including tonsillectomies on both of my kids. Their tonsils also looked normal, but were riddled with puss when removed.

 

I would do it again in a heartbeat. It was the only thing that worked. We did not do IVIG at all, and no one even suggested it. She is still on zithro 2x/weekly, they said for at least another 8 years or so.

She was dx'd with Pandas and Sydenham's chorea.

 

Where your kids on antibiotics (and which ones?) prior to tonsilectomy?

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Both kids were on zithromax for about 10 days prior to surgery and 10 days after. As soon as we stopped the abx to go back to the twice weekly routine, she had a major relapse and antoher episode of debilitating chorea. Her neuro said it was the result of bacteremia from the tonsillectomy. Her symptoms were almost always more chorea-like than Pandas, although she had some Pandas symptoms too, but the Cunningham test showed Pandas. Her tics/chorea were so bad that she was unable to walk or read. Her neuro said the inability to read was because her eyes were oscillating in a different direction than her head/neck area was. It was horrendous, to the point where she was using a walker and wearing a neck brace.

 

 

During her severe episodes, we also tried clindamycin and steroid bursts, which did work the first few times. We also tried depakote, which actually made her worse, and tegretol, which helped slightly but made her sleep literally all day and put on 12 pounds during the 2 weeks she was on it (and she only weighed 85 pounds at the time). We also used valium, which would take the edge off the tics enough for her to sleep and not jolt out of bed. Also used biaxin & medrol at one point, but it gave her such severe diarrhea we had to stop.

 

She never really had any OCD, but she did have one episode that was almost like paranoia when both of them got sick. This resolved with a double daily dose of zithro for about a week.

 

She is still on zithromax, although she is very resistant to taking it because it gives her gastro issues, but at this point, we don't really have a choice.

 

I would absolutely do it again if necessary. We did it on an outpatient basis at CHOP via arm veins.

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My dd had PEX in NYC. Her pediatrician ordered it for her using protocol from Dr. L and Dr. T. That way we didn't have to travel at all. It's ordered from an infusion company and can be performed at any hospital. The hospital staff does not perform the procedure. It doesn't help to ask a hospital if they do PEX because it's an outside company that goes into a hospital with the machine. You local Dr. just has to order it.

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