questions about tonsillectomy - please share experiences

[Megan]

Hi all,

I am new to the board and would love to hear your experiences with tonsillectomy. I know it can help in some cases but is not considered an official PANDAS treatment. My daughter is scheduled for one in 2 weeks. She is on zith but still having bad tantrums every evening after dinner. We may be switching to augmentin.

 

If your child had a tonsillectomy, was he/she having any PANDAS symptoms prior to it? Did the surgery stop any of the symptoms? I have heard that you want to try to clean out the tonsils with abx prior to the surgery but I am wondering if the fact that she still has symptoms means the tonsils are still infected.

 

Also - the ENT who will be taking them out uses a procedure called an intracapsular tonsillectomy which leaves a small part of the tonsil intact. I don't think this is a good idea but was wondering if anyone can tell me if they had this type of tonsillectomy? I asked if they could do the traditional one and he said probably unless they were too far back or something.

 

Finally, has anyone had a complete remission with the tonsillectomy? One woman in my local mom's club said her son's tantrums stopped immediately after the tonsillectomy and haven't returned so far (months later). She was not aware of PANDAS but was told by her ENT that kids get tired from not sleeping well and then have tantrums. At least the ENT recognized the link between tantrums and tonsil removal even if she didn't see PANDAS as the cause.

 

Thanks,

Megan

[airial95]

First - a few pointers. My son was flaring at the time of operation last year. His sister tested + for strep about a week before the surgery.

 

He was on a treatment dose of Cefdinir prior to the surgery - was given IV abx during the surgery - and switched to treatement dose of Augmentin for 6 weeks post surgery. (We switched to Augmentin b/c we were already seeing failure in the cefdinir leading up to surgery). We also had the entire family on a 30 day course of abx starting 10 days prior to surgery, including both of our dogs. (We wanted to make sure EVERYONE was clear!) I also pretty much lysol bombed the house about 2 days before...I'm a little neurotic that way

 

I would make sure that she gets IV abx during the surgery. We waited to switch abx until post-op to have a "Fresh" soldier in the fight so to speak.

 

Now - as for our experience - immediately post-op our son was 100%. No OCD, no tics, no anxiety, no tantrums, no rages, NOTHING. The first day or two we just thought it was he was still feeling the effects of being put under...but it continued. The change was so dramatic that even relative strangers noticed it (other parents at the bus stop etc...). Two weeks post-op they tried to lower the dose of Augmentin to a prophelactic dose and he had one tic creep in (a head/neck craning movement- not terribly noticable) but no behaviors. Immediately went back to full strength. It was the first time in almost 2 years we had our son back.

 

The surgery was such a success that we had his sisters done two weeks later (she's mild PANDAS - but had already had strep 4-5 times that year).

 

Things were perfect for about 6 weeks. At X-mas we went up north to visit family - 20 hour car ride, followed by 7 days in Grandma's VERY small house, in cold weather so outside time is limited, not to mention all of the sweets/treats eaten at X-mas - and we started to see the hyperactivity come back. We thought it was because of the circumstances (those visits make ME stir crazy - can't imagine being a 4 yo boy!) but we finished the 6 week course of Augmentin right when we got back and within 5 days he tested + for strep again, and we saw ALL of his old behaviors coming back. Fortunately, they weren't at the same magnitude as pre-surgery - but still there all the same.

 

He's since tested positive for strep 6 times this year (most recently 4 weeks ago while on 500 mg Augmentin 2x/day AND 250 mg Azith 1x/day) so it wasn't our miracle cure.

 

Would I do it again - in a heartbeat. We now know we can get our son back to himself. It had been so long we forgot his true personality and had accepted a "new normal".

[sosudden]

I believe getting dd10 tonsils and adenoids out was also a very important part of her continuing to heal. Not an overnight change for us - but part of her answer to healing.