Tonsilectomy-Outcome

[ajcire]

My son is mild. I don't know if the T/A helped or not.

 

His symptoms were mild prior and are mild now.

 

The pediatrician who didn't really believe in the pandas told me that as a mom if I did believe it was pandas that she would suggest I get his tonsils out. The ENT was very willing to learn about pandas. He had not been familiar with it but was taking my non pandas daughters tonsils out due to clear cut too much strep... she met the guidelines. When I asked about my son he took out his laptop, googled pandas and told me he would be very willing to remove my son's tonsils based on what he was reading and what I was telling him. He gave me antibiotics for a week prior, gave intravenous during (but he always does.. not just for pandas) and for a week after.

[eljomom]

arial95---what do you mean injection? like rocephin shot? I thought IV abx during the procedure was standard? so you mean that PLUS a shot? my dh wants to just pull the tonsils, wihtout repeated strep or high titers. Just b/c Dr. L said to do it. I am still skeptical.

 

My more severe PANDAS Son had a T&A in mid-November. It was on the recommendation of our pediatrician, confirmed by Dr. Murphy, our immunologist and the ENT as the right path for him. My understanding on the split on T&A among the experts is that the research is only 50/50 on it being a cure for PANDAS itself, the way it was explained to me is that if PANDAS is the ONLY reason for removing them, it may not be helpful, but if there's chronic infection, larger tonisls, etc...in addition to PANDAS, they should go. At least that's what we were told.

 

Our son was on abx prior to the surgery (Cefdinir), was giving high dose abx during the surgery and initially only 7 days of Augmentin (he'd never been on that prior). He was only at about 50% (at best) at the time of the surgery, having had strep in the month prior to surgery, and his sister tested positive the week of the surgery.

 

We saw a 100% elimination of symptoms immediately after the surgery. Surprisingly, his culture on the tonsils came back negative, so the ENT didn't continue the abx, but our pediatrician and Dr. Murphy agreed he should continue, so he went on for another 60 days (initially at a lower dose). About 10 dyas post op he develped one new tic (immediately uped his abx dose). That was his only symptom for about 6 weeks. All of his OCD, ADHD, ODD, everything - was gone. Neighbors and friends couldn't believe he was the same kid they've known for the last two years.

 

This lasted about 6 weeks. We noticed the hyperactivity came back over Christmas - but we had also driven 20 hours to New York and were crammed in my in-laws small house with lots of sugary X-mas fun. Unfortunately, on our return, the OCD and bedwetting crept back in and he tested positive for strep. He's now had 2 confirmed infections since the new year. His symptoms are definitely less severe than prior to the T&A.

 

It was such a sucess initially, that we had our mild PANDAS daughter's done two weeks after his surgery. She had a strep infection at the time of the surgery, and we only did a week of abx post-op, and she has been better. She's mild, so we haven't seen as much of a difference in her.

 

Eventhough my son got strep again, so all the gains that we made are now been set back, I would absolutely do it again in a heartbeat. It was worth it to have the 6 weeks that we did. And it also showed me that we were not living with a new "normal" (we were beginning to question the ADHD specifically and if maybe that was something non-PANDAS related.)

 

Some folks got worse with T&A, and I would recommend that you insist on injection of abx during surgery and at LEAST 30 days post-op. Chronic infection is still our issue, removing the tonsils gave us a 6 week break from 2 years of constant infections. Now it's on to the next step in our journey to try to figure out why he looks so good on paper (awesomely normal labs all the way around!!) yet swabs positive at least every 6-8 weeks!

 

If you want more details on our amazing initial recovery - look at some of the topics I started in November/December, I updated on our progress quite frequently.

 

*EDited to say injection of abx - dindn't mean to imply IV - my bad.

[Kiera]

My ds just had his Ts & As out yesterday. I decided, after my research, to just go ahead and do it and I am so glad I did. His tonsils were small and normal looking, he hasn't tested pos on throat culture since the initial onset of Pandas 2 1/2 yrs ago, but titers have been mildly elevated all that time (think he's a carrier). Well anyway, ENT pulled them purely on the advice of neurologist for pandas, he said they were kinda hard to get out due to scar tissue, which indicates possible chronic infection! One of the sinuses was completely full of mucus, despite being on steroid spray and allergy meds and antibiotics. Everything was sent for culture so I'll get those results next week. We switched antibiotic 10days prior to augmentin (full dose) for broader coverage and will continue 10 days after. The ENT said they don't usually give a dose of IV antibiotics intra-op, but I asked him to and he said sure (love the ENT!). Everything went well, a bit sore but pain meds to take care of that and I'm just so glad it's over and wish I hadn't belly-ached about it so much and did it sooner! I'm planning ivig next, so wanted to get the tonsils out prior so as not to undo the effects of ivig by doing it post. I'll keep you posted.

[eljomom]

Please keep us posted Kiera! Is Dr. L your neuro who recommended the T&A?? How did they see the sinuses? Also, can you remind me of your ds's symptoms leading to IVIG? Thanks! Still trying to decide about Tonsils out...

[airial95]

arial95---what do you mean injection? like rocephin shot? I thought IV abx during the procedure was standard? so you mean that PLUS a shot? my dh wants to just pull the tonsils, wihtout repeated strep or high titers. Just b/c Dr. L said to do it. I am still skeptical.

 

]

 

I thought it was I'VE as we'll, and actually OT may have been, but our pediatrician mentioned it was a shot of rocefin in passing after he saw the surgery report. I haven't looked at the report myself, so I'm just going by what I remember him saying. I may be wrong, but the major point is he had abx during the surgery itself.

[Kiera]

The neuro is not one of the experts, just a local neuro who believes in pandas and treats (not ivig though) so that's why I'm flying to see Dr K next month. Initially we saw the clogged sinus incidentally on the brain MRI (which was done as part of a complete work-up). They have ways of looking in there in surgery to suck it out. My ds 9, has severe symptoms, has had chronic issues since infancy and every year the list gets longer, SPD,anxiety,ADD,tourettes,GI problems, allergies etc and on and on. Everything exploded 2yrs ago with his 1st strep throat so my theory is - all his "diagnosis" are actually just pandas "symptoms" not disorders in and of themselves, so I'm just beginning to believe pandas has been his problem from the start but just came to light 2yrs ago. He's had a couple of remissions since diagnosis but seems stuck in an exacerbation since last April. His symptoms are rages/meltdowns/sensory off the wall/ADD - nothing done at school/tics/transient OCD. Can't wait to see what Dr K feels! Will keep you updated.