To pull or not pull, tonsils?

[sf_mom]

So our son is 16 days post IVIG and doing extremely well. I'd say he is about 98% better. We are also seeing improvement in areas that we didn't realize was PANDAS. Honestly.... he has been sicker much longer with an explosion of symptoms June 24th that most would consider the 'sudden onset'.

 

Anyway, his tonsils have been swollen ever since the June illness. He is home from school today because he was complaining of a sore throat. Rapid test was negative and we are still waiting for the cultured results. No increased TICS/OCD behavior. Although the swelling in his tonsils has improved they're still considered larger than normal. Dr. K seems to think that pulling the tonsils and adenoids in general wouldn't be required.

 

We have an appointment with a new Pediatrician that has experience with PANDAS tomorrow and I plan to mention his tonsils. Any thoughts on pulling or not pulling, tonsils? I've looked at the discussion below and I'm worried that the surgery might expose him to strep when he is currently doing so well.

 

-Wendy

[thereishope]

Personally, I'd give his body a break and not do it right now. Maybe down the line when you've all had a chance to have peace and has been in good health for awhile, then you approach that idea. My son had his out and I don't regret it since I don't know how many times it will stop him from getting strep. But, I would wait for now if I were you.

 

Who is providing you the script for your antibiotics? Dr K? I ask because if it's the ped, you also don't want them to say your son doesn't need proph antibiotics if his tonsils are out or give you some type of ultimatum...no antibiotics if you don't have surgery. Contemplate if you even want to chance putting that thought in their mind. Meaning it's best to make your own personal decison before approaching it with the doctor.

[KeithandElizabeth]

Such a hard decision.....

 

After going back and forth and canceling our tonsillectomy surgery 3 times, we finally decided not to do it. This is so controversial and I think you will get such different opinions. Our son's tonsils are hugh and severely scarred from his bouts of strep.

 

I am going to wait a year and see what IVIG and the antibiotics do for his tonsils. I have friends who did do the surgery whose children went on to get strep still in their throat, sinuses and stomach.

 

If I do decide in a year to do the surgery, one option is a partial tonsillectomy, where your child's tonsils are kept in but are reduced and the pits are taken out with laser surgery. This way you still get to keep an important part of their immune system.

 

Just something to keep in mind.

 

Have you taken a strep test just to make sure he doesn't have strep?

 

elizabeth

[dcmom]

Sorry you are struggling with the decision. These things are so hard.

 

I agree with Vickie's advice.

 

My dd was back to 100% when she had her T&A, it brought about another pandas episode. They were infected when they came out. So, I am glad they are out, as I believe there is a slight possibility that it could prevent some strep infections in the future. That being said, she lost another few months to pandas, which is heartbreaking.

 

I think in the end, it may be wise to get them out at some point. If he is doing well now, I would let it ride. Enjoy him. If he has another episode, bout with strep, etc. - you can get them out then....

 

(apparently, there are some studies to indicate removal of the tonsils can help minimize future strep infections. However, it is not absolute. My older non pandas daughter had her tonsils out a couple of years ago because of sleep apnea, and still got the same strain of strep that caused dd's pandas.)

[pixiesmommy]

Mine is going to be a bit of a different perspective:

 

On the slight chance that you don't "just" (ha!) have PANDAS but also have something that may be affected by anesthesia and/or the chemicals used in anesthesia, I would try to go as long as possible without doing it (as long as he is healthy, at least.) By this, I mean that things like Bipolar can be made worse, or can be triggered by anesthesia.

[sf_mom]

Thanks for your perspective.... I definitely think you guys are right. I was just so surprised to see them still so swollen after IVIG and the current course of antibiotics. I guess I thought it would resolve itself and it wouldn't matter.

 

Has anyone heard of Cryotherapy? Where they freeze the tonsils.

 

-Wendy

[pixiesmommy]

Our current ENT just checked Pixie's tonsils because the ped felt she had a bit of tissue there that may be harboring strep and he asked if she had had hers frozen or lasered. He said that the "old fashioned" way of surgically removing tonsils is best because you can get all of the tissue. With hers, there is quite a bit left. I feel like I can trust him AND it makes sense to me because mine were done around the same time as hers and we both had different methods (mine was old fashioned way, hers was cryogenic) and while hers was WAY less painful (maybe because she is a child, but still....) there is NO tissue left of mine and you can actually see hers - as just a layperson looking a throat anyway.

 

HTH

Manda

[thereishope]

I'm curious, were you really observant of his glands prior to his last strep infection for comparison? For example, my glands (I still have my tonsils) would probably be considered enlarged or look swollen even though they are not infected. That's just how they are.

 

How swollen are they?

[sf_mom]

Vickie... I have to say, I wasn't really aware until the 'FIRST' immunologist who was a non PANDAS believer pointed it out. They seem better but still enlarged. One Dr. said they looked fine but the Dr. that tested him today said enlarged but not red. I hope to get another perspective tomorrow from new Pediatrician.

[thereishope]

Have you seen an ENT? My 8 year old has very large tonsils. The ENT admitted they were but has seen larger. He said he's seen ones that are so big that when the child talks it sounds like they have marbles in their throat. Unfortunately, my kids inherited my tonsils. When you touch the outside of our necks, they feel like lumps.Lumps that move as I push on them. My husband's are so tiny. When I look in his throat, I can't even tell where his tonsils are!

[dcmom]

SF mom-

 

How is he sleeping? My non pandas dd had enlarged tonsils (from strep) that did not improve with abx. We had to get them out because they caused sleep apnea in her. She was snoring (like an old man), gasping, and being roused from sleep. She was not getting enough deep sleep, and the teacher noted a big change in her energy in school. Once we got her tonsils out- back to sound, silent sleeping- and the teacher noticed a difference in a week!

 

So, just as a side note, if they are enlarged, keep an eye on his quality of sleep....

 

Eileen

[sf_mom]

Thanks, that is helpful.... so far no problem but his uncle and grandfather both have sleep apnea from snoring.

[EAMom]

Here's an older thread on this topic http://www.latitudes.org/forums/index.php?...art=#entry30859 which has some interesting insights.

[sf_mom]

EAMom you are the best. We are seeing Fredrick Lloyd over at PAMF for the first time. Apparently, he has several PANDAS patients so we will see what he has to say.

 

-Wendy

[EAMom]

Let us know how he is. My younger dd recently had a frenulectomy (she was tongue tied), with another PAMF ent doctor. I was told that the recovery time for that is a breeze (1 day) compared to tonsilectomy (2 weeks).