T&A?

[MichaelTampa]

Okay, I think I finally figured out what T&A means on this board, I have been confused and making funny faces every time I saw it. Tonsilectomy and adnoidectomy? Are people regularly getting these removed for PANDAS treatment? Or just sometimes? How is this decision made (what factors are considered)?

 

Michael

[ajcire]

I don't know the answers to your questions but your post totally made me lol.

 

Okay, I think I finally figured out what T&A means on this board, I have been confused and making funny faces every time I saw it. Tonsilectomy and adnoidectomy? Are people regularly getting these removed for PANDAS treatment? Or just sometimes? How is this decision made (what factors are considered)?

 

Michael

[thereishope]

The main purpose is to try to limit contracting strep.

 

I giggled the first few time I referred to my son's surgery as "t and a". Yes, tonsils and adenoids. It is not necessarily routine for PANDAS kids and I actually think the guidelines is that PANDAS kids don't really benefit from having tonsils removed. However, the ENT told me that it reduced his chances of contracting strep by 80%, so I went ahead and had them removed. Then a month later he had strep again But he hasn't had strep since that last time!

 

I know one person that was a strep carrier and after surgery never had a + strep test again. And I know others who continued to have chronic strep post surgery.

 

I guess it's a personal decision. I saw it as I don't know how many times surgery would prevent strep. But even if it prevents it once, it's worth it.

[EAMom]

I belive in a few cases a T&A is important to do...there was someone ( who was that??) who posted recently with a teenage girl. She had a t &a and it turns out her tonsils were badly absessed. She is doing well now. I don't think antibiotics alone would have been enough.

[tantrums]

I know that there have been lots of studies as well about the link between enlarged T&A and ADHD/autism spectrum. We were seeing that in our own son when he was 3. Turned out to be sleep apnea, which I believe is the link. The kids are overtired and therefore act out and are hyperactive. They have discovered a LOT of misdiagnosed kids who have the removal and then are just fine. We were questioning our son, who it turned out was not getting nearly enough restorative sleep and was losing his hearing - the adnoids blocked his ears and cause "glue ear". When he had them removed, his behavior improved 1000 fold!

 

I would also think it would limit the strep infections in PANDAS.

[Fixit]

is there anyone who had a bad experience with this or heard bad results?

[CSP]

My computer is not working at this time, so I have to make this quick I'll try to get back to you all when I get it fixed.

 

Just wanted to say our son has been doing very well with the vocals since the T&A. We do not understand why, but he goes for an hour or longer without making any vocals. So far we can only hope it was the T&A that has helped. I would say the best he has been since this summer when he first started the Keflex. He is not taking any ABX at this time.

 

CP

[thereishope]

Well, what I learned from our experience is to wait until your child is healed from their last PANDAS exacerbation, if possible. The question is why some kids end up having strep and an exacerbation shortly after surgery. One person gave a great theory that it is the anesthia that opens up the BBB. This makes sense when yo ualso take into account those having exacerbations following getting laughing gas at the dentist. Another person thinks kids may be getting exposed during surgery. So, you would want to request IV antibiotics during surgey and good antibiotics post surgery. Not the regular 3 days post. I would alos include waiting until summer, again if possible.That way if something happens and an exacerbation occurs, so don't have school issues to deal with for a few months.

[peglem]

My daughter had the worst exacerbation ever after her T&A (maybe we should start calling them A&T's so I can get over this adolescent sense of humor about it!) and she still got strep afterwards. Turns out she's a carrier and tissue damage in the throat/mouth facilitates strep release in that case. Just telling our experience with it.

[fuelforall]

My daughter had the worst exacerbation ever after her T&A (maybe we should start calling them A&T's so I can get over this adolescent sense of humor about it!) and she still got strep afterwards. Turns out she's a carrier and tissue damage in the throat/mouth facilitates strep release in that case. Just telling our experience with it.

 

PEglem, interesting. My son has never had strep, to our knowledge. I wonder if it would be the same for him. If your daughter was already prone to strep, maybe that was an indication.

I just feel like both his dad and mom had to have their tonsils out and that genetically, there may be good reason to do so as well. Just an unfounded hunch but...

[faith]

My daughter had the worst exacerbation ever after her T&A (maybe we should start calling them A&T's so I can get over this adolescent sense of humor about it!) and she still got strep afterwards. Turns out she's a carrier and tissue damage in the throat/mouth facilitates strep release in that case. Just telling our experience with it.

 

peg, what do you mean by tissue damage facilitating strep release? I still don't really understand what exactly a carrier means, but does it also mean that the strep gets into the damaged tissues right away 'because' she is a carrier? what if she wasn't,? would just being exposed to strep from anyone else cause that too? did she have big tonsils to begin with? why did you take them out?

 

 

thanks

Faith

[peglem]

My daughter had the worst exacerbation ever after her T&A (maybe we should start calling them A&T's so I can get over this adolescent sense of humor about it!) and she still got strep afterwards. Turns out she's a carrier and tissue damage in the throat/mouth facilitates strep release in that case. Just telling our experience with it.

 

PEglem, interesting. My son has never had strep, to our knowledge. I wonder if it would be the same for him. If your daughter was already prone to strep, maybe that was an indication.

I just feel like both his dad and mom had to have their tonsils out and that genetically, there may be good reason to do so as well. Just an unfounded hunch but...

I am absolutely not giving advice, just sharing experience. Also, I should have pointed out that my daughter's tonsils were not infected at the time of her surgery and were not swollen or enlarged, either. It was done solely to try to get rid of the strep, when we didn't have very much information about her condition. It was an act of desperation! She only had a 10 day course of amox. after surgery and was not yet on prophylactic abx. The ENT did not believe in PANDAS. It was 2 months after the surgery before she was swabbed for strep again-we all just thought that that would take care of the problem...

[tantrums]

Making me wonder now if removing my son's tonsils caused this? I often beat myself up over NOT speaking up and refusing to have his tonsils removed. There was no reason for it other than the ENT insisting that they "always" remove the tonsils when they remove the adnoids. His adnoids were ridiculously large and obviously had to go - no question there. He'd never had strep, sore throats, etc... Tonsils were normal size, shape, etc...

 

Okay, I think it's time for me to stop reading and get some sleep. I'm going to what if myself into a sleepless night here

[peglem]

Making me wonder now if removing my son's tonsils caused this? I often beat myself up over NOT speaking up and refusing to have his tonsils removed. There was no reason for it other than the ENT insisting that they "always" remove the tonsils when they remove the adnoids. His adnoids were ridiculously large and obviously had to go - no question there. He'd never had strep, sore throats, etc... Tonsils were normal size, shape, etc...

 

Okay, I think it's time for me to stop reading and get some sleep. I'm going to what if myself into a sleepless night here

Well, anyway, too late to put them back!

[thereishope]

I'm a little confused. maybe it's too early to be reading this. Peg, what did removing tonsils do? Did it worsen it?What was her status prior to surgery. I know you said at that point you were aware you were dealing with PANDAS, right?

 

For others who are new, t and a surgery will not cause PANDAS. Perhaps in some it may lay a foundation in some way that it may resurface but choosig surgery does not actually cause all this to begin.

 

Also, my son did have strep a month after surgery, but he also eventually recovered from that exacerbation. He has been strep free since march 09 now. That is after getting strep 3 times w/ 6 months along with follow up negatives in between to make sure it was gone. I don't know if surgery, for him, aided in him not strep a again so far this year. I just know I'm happy he hasn't had strep for 9 months.

 

So, like I said previously, if it something you are considering, stop and look at where your child is in recovery.

 

1.I would suggest they are recovered from their last exacerbation. One that helps with how they deal with the experience and if they have another one following, it will be on a healed brain and body that is ready to fight an infection in the event a setback were to occur.

 

2.Have IV antibiotics during surgery.

 

3.Long term,stronger antibiotics following surgery.

 

4.Try to so surgery during the summer while school is out and it is not strep season.

 

5.Maybe, for a time, keep up with regular doses of Ibuprofen post surgery to limit any inflammation that may occur.

 

6.Hm, I wonder if adding a swab at the 2 week post surgery period would be beneficial too.

 

I'm not promoting t and a or saying it is a mistake. I just want to share what I learned form it. There a few things that I would do differently that I did not do on that list.

 

A couple months ago I did a survety on here on setbacks following t and a. If you'd like me to pull it up, I will.