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I know this topic has been addressed but it never hurts to re-visit every now and again. My dd has been symptom free for about 1 1/2 months and on antibiotics but her ASO is higher than ever before and Anti-Dnase is also high. Dr thinks it is now a good idea to remove tonsils due to chronic sore throat. I am aware that symptoms may return in full force after this surgery. What preventative measures can we take after surgery to help this? My immunoligist is great and has treated PANDAS before but this is all new to our ENT. He is open to suggestions that have benefited other PANDAS kids. Dd is on 500mg azithromycin 3x/wk as of now, surgery is scheduled for Tues.

Edited by Ashlynsmom
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IV antibiotics during the procedure, and continuing on the azith afterwards.

 

You may also request that his tonsils get sent out for a culture to see if there is strep in them. You need to ask this before the procedure.

 

Good luck.

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I know this topic has been addressed but it never hurts to re-visit every now and again. My dd has been symptom free for about 1 1/2 months and on antibiotics but her ASO is higher than ever before and Anti-Dnase is also high. Dr thinks it is now a good idea to remove tonsils due to chronic sore throat. I am aware that symptoms may return in full force after this surgery. What preventative measures can we take after surgery to help this? My immunoligist is great and has treated PANDAS before but this is all new to our ENT. He is open to suggestions that have benefited other PANDAS kids. Dd is on 500mg azithromycin 3x/wk as of now, surgery is scheduled for Tues.

 

How much does your dd weigh?

 

I seem to remember something about (Dr. T?) using Clindamycin b-4 tonsilectomy. Maybe I am imagining things!

 

Have you throat cultured family members (checking for carriers)?

 

BTW, I think Diana P.'s son got steroids after T & A...you could contact her for more info. http://www.pandasnetwork.org/

 

I agree about getting the tonsils cultured!!

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I cannot remember the name of the abx my niece took prior to t&a but I know she was testing positive for strep while on abx and they added one that kills it on the surface. Whatever the abx was I remember it made her urine and tears red.

Edited by tired mom
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I cannot remember the name of the abx my niece took prior to t&a but I know she was testing positive for strep while on abx and they added one that kills it on the surface. Whatever the abx was I remember it made her urine and tears red.

 

I googled...it looks like it might be rifampin. http://www.rxmed.com/b.main/b2.pharmaceutical/b2.1.monographs/CPS-%20Monographs/CPS-%20(General%20Monographs-%20R)/RIFAMPIN.html

 

hBTW, that's the one that Peglem took with Augmentin with great success.

 

Isn't rifampin usually given with another antibiotic (eg. not alone?). Not sure.

Edited by EAMom
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Great information! I will have tonsils cultured-didn't know to ask.

 

My dd weighs about 87 lbs

 

Yes--family has had throat cultures and where negative--wish I knew how to go about checking cat and dog ?

 

I believe the abx rifampin is what ENT said he wanted to use--and looked it up-it is the one that turns tears and urine red--great to know because it will ruin contacts and she wears very expensive tinted contacts for a light disorder she has -- that would have been great :(

Edited by Ashlynsmom
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EAMom -I seem to remember something about (Dr. T?) using Clindamycin b-4 tonsilectomy. Maybe I am imagining things!

 

Dr T recommended we use clindamycin 5 days prior to and 5 days following dental work, as he would use clindamycin for T&As. Although, I don't know if the time you would take it would be increased 'cos of the more invavsive nature of a T&A...

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  • 1 month later...

I know this topic has been addressed but it never hurts to re-visit every now and again. My dd has been symptom free for about 1 1/2 months and on antibiotics but her ASO is higher than ever before and Anti-Dnase is also high. Dr thinks it is now a good idea to remove tonsils due to chronic sore throat. I am aware that symptoms may return in full force after this surgery. What preventative measures can we take after surgery to help this? My immunoligist is great and has treated PANDAS before but this is all new to our ENT. He is open to suggestions that have benefited other PANDAS kids. Dd is on 500mg azithromycin 3x/wk as of now, surgery is scheduled for Tues.

 

Ok found this thread...

how is your dd doing..i hope well!!!!

would love an update!!!

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So Glad to share!!! Had T&A on July 27--even though strep swab always neg the tonsils were sent to pathology and showed positive for strep and could tell had long term infection present. DD did great with no sign or symptoms of PANDAS then or since! Dd has stayed on Azithromycin since surgery and will be doing ASO and Anti-Dinase (sp?) next week. I will post results lets pray her levels are going down!!

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So Glad to share!!! Had T&A on July 27--even though strep swab always neg the tonsils were sent to pathology and showed positive for strep and could tell had long term infection present. DD did great with no sign or symptoms of PANDAS then or since! Dd has stayed on Azithromycin since surgery and will be doing ASO and Anti-Dinase (sp?) next week. I will post results lets pray her levels are going down!!

 

 

THanks for sharing..

you never did do pex or ivig ...right...???

 

did you do iv abx drip during surgery???

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Wait..you're saying your child always cultured negative, but analysis of the tonsils after they were removed revealed strep??

 

Was it difficult to get them to analyze the removed tonsils? What exactly did you ask them to do? My non-pandas dd7 is getting them out next Friday even though the ENT isn't crazy about the idea, he's willing to do it based on the pandas specialist's recommendation. Dd7 has never cultured positive either, but runs high titers and last bout had classic strep throat symptoms and PANDAS dd10 did also react. I asked the ENT why the girls wouldn't culture positive and he didn't know why except to question whether it was strep.

 

I can't remember...do they put all children on antibiotic after T&A?

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We never did pex or ivig because she got better before insurance approval but both ASO and AntiDnaise kept rising. But the sneezing stopped, the crowd anxiety and the seperation anxiety disappeared as well as the OCD germ thing (couldn't go to public places for fear of germs),the other fears left and finally the nightmares also. 6weeks post T&A and nothing has returned.

 

Yes she got drip antibiotics plus 10 day's after (can't remember what was given but will get all reports this week) Azithromycin started after 10 days of other antibiotics.

 

Her ENT just sent tonsils for path and asked for all kinds of test (not so sure he wasn't trying to prove wasn't strept at the time) This is not usually something that is done so I requested it but he had already decided to do it even before my request... Your ENT would know how to get it done. My husband actually did follow up for details but I will be getting the path report this week and can tell you more at that time (sorry) Whatever showed has made a believer of her ENT because he was VERY surprised at the outcome!

 

I will post results of blood test in about a week ...

 

Funny side note... During surgery a second anesthesiologist was present (due to a fear of ours of the outcome of the sedation due to previous experience) ENT was filling him in on DD'scase and he said OMG my son has PANDAS also! DD ENT was certainly wound up when he came out of surgery... Another ENT has now officially been added to the list of believing Dr.s due to this one childs experience! Prayerfully he can help others along the way!

 

Keep up the battle because we are going to win the war!

Edited by Ashlynsmom
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