Tonsillectomy

[Cheers]

My daughter was diagnosed with scarlet fever today. Because of her reoccuring streps and now this...Dr is suggesting tonsillectomy. I have an appt scheduled with a Ped ENT for May. Has anyone has success with this? I am still not even sure she has PANDAS and if she does, it is super mild. But she simply gets sick far too often and has strange (non typical) symptoms when she does.

 

I am petrified for her to go under or have any surgery. But if it would mean a healthier child...then obviously I'd want her to have it. Thought I will be an absolute wreck the whole time...

 

Thoughts?

[blakes_mom]

My 10 year old pandas son had his tonsils and adenoids removed 1 week ago. It was recommended for him 5 years ago but I kept reading that the tonsils were protective and so we never did this until now. He has done great with this surgery. Not only are his tics gone( 2 days after surgery) but his appetite is better and his allergies seemed to improve also. He did not have very much pain with this. I dont know if this will be the final chapter in our pandas story but for now I am happy we did it. The surgeon thinks his infection was in his adenoids. IMO I would have the tonsils and adenoids removed.

[fightingmom]

My son has his adenoids removed and tubes put in his years around 4-5 years old. For some reason they kept his tonsils. Maybe it was because during this time he was having serious sinus and ear infections, but his throat wasn't too bad. In any case, it was pretty easy on him. He was fine the next day. No kidding.

[airial95]

My son is a severe PANDAS case - we've been fighting for over 2 years now. He could never go more than a couple of weeks off abx before testing positive for strep again. We got his tonsils and adnoids out at Thanksgiving last year - just after his 4th birthday. He was on abx up until the surgery, given IV (or injection - don't remember) abx during the surgery, and was given full strentght Augmentin (which he hadn't been on previously) for 7 days by the ENT.

 

The results we saw were nothing short of miraculous. He was 100% symptom free almost immediately after the surgery (if you search some of my posts from November/December of last year, you can see the specifics). The pediatrician and Dr. M our PANDAS doc didn't want him to end the abx after 7 days eventhough the culture of his tonsils came back negative, but they did lower the dose. Within a few days of the lower dose he started with a new tic. They IMMEDIATELY uped the dose again, and while the tic didn't go away - no other symptoms returned. OCD was our biggest issue, especially around food. He gained 7 lbs in 6 weeks and the #1 thing heard around our house at that time was "what can I have to eat now mommy?" A refreshing change for a kid with a 7% BMI!

 

We were so thrilled with his progress that we got our daughter's tonsils out (she had adnoids done previously) in December - she's a mild PANDAS case.

 

Now - with all that being said - come the new year, and we are already 6 strep infections in - 4 for my son and 2 for my daughter. So the T&A wasn't our magic cure. (Our immune systems check out perfectly so why there's such recurrent strep is a mystery we're currently working through!!)

 

Would I do the surgery again knowing it wasn't the final answer for us - ABSOLUTELY!!! It was worth it for my son to have even a short reprieve of his symptoms, and it also gave us recharged energy to keep fighting because we KNEW for sure he could be cured and we weren't just dealing with a new normal.

[ptcgirl]

My DD was 9 when we had both t and a removed after nearly three years of continual OCD from pandas. Immediately all symptoms went away for nine months. Then it all came back. We know she got Lyme too sometime in there. Anyway, those 9 months were well worth it. Just wish we could get her back to that spot now. Hoping Ivig will help. Scheduled for July. Good luck.

[Kiera]

Most definitely do it! My ds's tonsils looked normal, pulled Ts&As purely for pandas, cultured pos for pseudomonas in t&a and were scarred from chronic infection so you never know! Be sure to up antibiotics 10days pre and post and iv antibiotics during procedure and ask dr to culture everything (they usually don't). We wouldn't have known about pseudomonas otherwise and did 10day course of cipro for that. it didn't improve pandas symptoms but may have been responsible for autoimmune reaction trigger, now awaiting ivig to clear rougue antibiodies. If I had've done ivig first it may not work due to chronic hidden infection!

[Cheers]

Thanks so much to all of you.

 

I have so much admiration for you all. I don't know how you do it.

 

(knocking on wood) I am still not entirely sure my DD (7) has PANDAS. Her symptoms have been pretty mild. She had a couple months last year with an eye tic after a case of strep. That is when I started researching and learned about PANDAS. I have started to realize that she does have some OCD tendencies...always thought they were just her neurosis (like mommy). But she has had strep related illnesses far too often. That with her particular behaviors and atypical symptoms (barely a sore throat...usually neg strep test...tummy trouble) has led me to believe she does have PANDAS or something like it.

 

This is our first time with Scarlet Fever. Again, barely a sore throat, no fever...but the rash is driving her nuts. I asked for a stronger abx than the usual. But she isn't on any maintenance meds or anything. Aside from these illnesses (at least every couple months), she is very healthy (again, knocking on wood), does great socially and academically. So I feel very lucky. But I know in my gut that something isn't right. I can always sense before an outbreak is going to happen too. Not sure how. But once she mentions a headache...I just get that feeling.

 

Anyway - thank you all so much. I wish I didn't have to wait for a whole month for our ENT consult...but you all have made me feel so much better about the surgery. I really appreciate it.