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New eBook: Your Child Has Changed; Should You Consider PANDAS?


Have you seen the ACN Latitudes PANDAS eBook?  Our helpful book is a 37-page primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need. Learn more

 

 


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Tonsillectomy


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#1 HanHan

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Posted 25 April 2012 - 04:32 PM

My dd8 is scheduled to have her tonsils out in two weeks. We are now second guessing our timing of it. If we do it in two weeks, she will still have 4 weeks left of school where she will be at the risk of being exposed to strep again and other viruses. Has anyone had their child's tonsils out during the school year and sent them back a week later with good results? Thank you in advance for your thoughts on this.

I just thought of one more question. Did your kids have intravenous abx. during the surgery? If not, how was the outcome? thanks!


#2 blakes_mom

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Posted 25 April 2012 - 06:19 PM

My son just had his T & A three weeks ago. He went back to school a week later. Luckily my surgeon is knowledgeable abour pandas and had my son on iv antibiotics during surgery and augmentin after surgery. My son is now on zithromax three times a week for strep prevention. By the way 2 days after surgery his tics were gone, the surgeon thinks the strep was hiding in his adenoids. In my opinion if your child is having symptoms of pandas/ pans and still have their tonsils and adenoids I would seriously consider this surgery.

#3 ptcgirl

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Posted 26 April 2012 - 01:55 AM

My daughter had them out when she was 9 and went to school on the third week following. She had IV antibiotics. It was like a miraculous recovery. She no longer needed any meds (previously she was on zoloft) and had zero symptoms. She was completely normal. 100% .... for 9 months. Now we are back to square one. Lots of meds (zoloft, abilify, abx, etc) and very symptomatic. Having first IVIG done in May. Hope it is the magic bullet. Also, having CBT done in FL with Storch's group. We'll see.

But, in answer to your question. It was great to have the t & a removed but only for 9 months (but the were a WONDERFUL 9 months).
Hope this helps.

#4 fightingmom

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Posted 26 April 2012 - 04:38 AM

Ptcgirl, I'm really sorry to hear that. How devastating to have your dd back only to fall back like that. We had adenoids removed and tubes in ears but my sons doc kept his tonsils. This was way back before we ever knew I pandas, but he was displaying behaviors at that time. He did well for about a ea and then was gettin sick all the time again.

#5 ptcgirl

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Posted 26 April 2012 - 04:55 AM

Ptcgirl, I'm really sorry to hear that. How devastating to have your dd back only to fall back like that. We had adenoids removed and tubes in ears but my sons doc kept his tonsils. This was way back before we ever knew I pandas, but he was displaying behaviors at that time. He did well for about a ea and then was gettin sick all the time again.

It is a blessing and a curse. Those nine months were great but I lived in fear that it would come back which it did eventually. I guess it does solidify Pans in my mind though. My pediatrician, after it came back,said it most not be pAndas since she didn't have strep. We've since moved on to a different doctor. I feel like I should send copies of all the latest reaearch that shows it isn't just from strep. Doubt she'd listen though. Some people can't stand to be proved wrong.

#6 fightingmom

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Posted 26 April 2012 - 05:13 AM

Do it anyway! I need more time to prove I am on the right path and more labs etc to solidify my position, but I have a list of docs that shut me down over the years and they are all getting a letter from me with as much proof of my sons condition along with studes, etc.
Even if I can keep one family from gettin is missed the way I was over the years from each of these docs it will be worth it!

#7 fightingmom

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Posted 26 April 2012 - 05:14 AM

Just saw the typos in my previous message! I really am literate, but typing on my iPhone is the pits!

#8 bulldog24

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Posted 26 April 2012 - 05:39 AM

my dd10 had t&A in nov Out 2 weeks. back to school. Got strep 6 weeks later.

#9 HanHan

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Posted 26 April 2012 - 05:47 AM

my dd10 had t&A in nov Out 2 weeks. back to school. Got strep 6 weeks later.



Did her pandas symptoms go away for those 8 weeks before she got strep and did they come back when she got the strep? I am really bummed we are not meeting again until the 15th. I was looking forward to the meeting I thought was going to be on the 23rd.

#10 hugs2day

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Posted 26 April 2012 - 11:41 AM

my son had tonsils and adnoids out in the summer and had a good recovery. Got strep at start of school year in late September and it was one of the worst episodes he ever had. He was oral amoxicillin before and after surgery.

Good idea to get iv abx and stay on oral abx after. Good luck.

Two boys with PANDAS sudden onset 3 weeks apart in 10/2010- DS10 and DS8.


#11 bulldog24

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Posted 26 April 2012 - 02:20 PM

Well my daughter does not have severe pans just mild. The surgeon i didnt like. Wouldnt culture the t&a
And did not give abx.

if i had to do over i woud have gone elsewhere and demanded these things.
Recovery was a bit rougher than I thought it would be. She needed every day. One day was ok next severe pain.

Get plenty of pain meds.

#12 bulldog24

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Posted 26 April 2012 - 02:22 PM

I was thinking though we dont need a schedued meeting. We pandas folks could get together whenever. We could just go out to dinner or something

#13 bulldog24

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Posted 26 April 2012 - 02:51 PM

I was thinking though we dont need a schedued meeting. We pandas folks could get together whenever. We could just go out to dinner or something

#14 HanHan

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Posted 26 April 2012 - 02:53 PM

I was thinking though we dont need a schedued meeting. We pandas folks could get together whenever. We could just go out to dinner or something


I was thinking the same thing. I was going to mention that in my last post. We could meet somewhere for a drink at night or a coffee during the day just to talk. Let's do it next week.
Also, could you let me know who you had for and ENT. I am had one but changed to another bec. he had earlier appointments but I am questioning whether to go to him or not.

#15 bulldog24

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Posted 26 April 2012 - 02:58 PM

I would be happy to meet. Lets see who else would go?

Our ent was dr. Shu




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