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For those who have done T&A


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My PANDAS son went for T&A yesterday, the surgery went well, the doctor gave IV abx and a rx for Augmentin afterwards. The little man did great, apparenetly when the anesthesiologist was getting ready to put the mask on him and told him not to be scared - his reponse was "I'm not scared, I'm a man - I'm brave"

 

By 4:00 yesterday, you wouldn't even know he had surgery, he was up and about and our biggest challenge was getting him to sit still and rest and take the pain medicine.

 

This morning - I thought for sure he'd be in pain - NONE! Still wouldn't take the meds though - so the doc said to use regular tylenol (which he will take).

 

Yesterday he was very sweet, and ate well, without any of the usual OCD issues he has with food. (And my daughter just tested postive on Monday - so we know at a minimum he's been exposed)

 

Today, we had two small fits - the first when I was trying to get him to take the pain meds (before the dr called and suggested tylenol). It lasted only about 15 minutes, and he fell asleep afterwards. The second was when I put him down for a nap - he was obviously tired, and he fought me. Again, it only lasted about 15 minutes -nothing compared to the old days, but there was a lot of hitting, kicking and spitting.

 

Both of those would be expected from any kid in his situation - just had surgery, probably a bit uncomfortable and tired and cranky.

 

My question is - when should we expect to see a difference? I know some folks had a severe reaction from the T&A - others got significantly better.

 

Good or bad - what was the timeline?

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One week to the day of surgery, dd (who was 98% going in to surgery) woke up in a full blown pandas flare.

We couldn't get to our doc for over a month :(

A month long steroid burst put her back to remission at that point.

 

I am still glad the T&A are gone.

 

I would keep in contact with the doctor, and if you (hopefully not) see a flare up maybe do a course of clindamycin and then a steroid burst.

 

Wishing you healing, and a happy thanksgiving!

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My son's recovery was a bit slower than your son's, but we saw improvement in the first week, definite improvement by week 3, continued recovery for two months. We eventually found other issues that have gotten in our way but the T&A brought nothing but goodness from a few days post-op onward (I am virtually certain there was strep in the tissue that was removed so taking it out was a very good thing for us).

Edited by LLM
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We had a smooth surgery and a long three week recovery. More pain and discomfort than PANDAS stuff.

About 6 weeks after T/A we had an issue flare up out of no where, trichtillomania.

Have done a lot of CBT, increased some meds, did some steroid burst ( cut that short, it was making it worse!) since the T/A 11 months ago.

We started noticing a marked improvement around month 4.

I am SO glad we did it. She has gained 15 lbs! in a year. ( and grew three inches) Jumped 25% in her growth/weight chart. That alone is a sign to us that she is feeling better.

Sure we have our ups and downs but I never regret taking them out. They needed to go.

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Thanks for the feedback. I've already made a follow up appointment with his pediatrician for next wednesday. They ran a bunch of labs and cultured the tonsils during the surgery and the ENT said the results should be in by next week.

 

Since there were no visible signs of infection on the tonsils, the ENT only gave us a 7 day rx for Augmentin (since my son has never had it, he was afraid he wouldn't be able to tolerate it). This way, if we need a refill, our pediatrician will give it no problem (he doesn't like to do less than 30 days with my son.)

 

We had some strange night terror type issues last night. He woke up 3 times crying that he was afraid he was going to go potty in his bed - took him to the bathroom and put him back to bed. He woke up about once an hour after the last time he did that, but just sort of sat up, whimpered a bit, and laid back down sleeping when I gently rubbed his back (10 seconds, max).

 

I don't know if that was pain, or what...but so far he seems to be doing a lot better.

 

Here's to hoping!!!!

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Airial - you said the doc only gave you 7 days of ABX. I think you work with Dr. M. as well. You might want to call her clinic and run this by them. I suspect they would want your son on for longer.

 

Regarding recovery - my son had a painful week or two (it was 7 years ago).... we did not know he had PANDAS at the time and did not know exactly what to look for, but I can tell you that when he went back to school 2 weeks later he was significantly better and got through the school day without trying to run out of the room or hiding under a table every day (maybe just once per week). The improvements continued over the next couple of years - slow and steady - but we knew that, in his case, the tonsils were the source of the chronic infection.

Edited by kimballot
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Glad the surgery went well! Heads up...my son did great with the surgery too, like yours. Then about a shy of a week later, he got very tired for a few days. He bounced back in a day or two. So, don't freak out if in a few days he starts to seem tired. It just made us remember the healing wasn't done.

 

My son was well when he went for surgery so I cannot comment on PANDAS improvement. He did have PANDAS symptoms resurface full force about a month later. He had strep again. So, don't dismiss a worsening of PANDAS symptoms once they have been better as a result of surgery alone. Still stay vigilant. Side note, that strep infection my son had a month after surgery was his last one to date (knock on wood) so I have to hope and believe the surgery did help with limit the recurrence of strep.

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Regarding the night terrors... my son who is very mild pandas.... had SEVERE night terrors for exactly one week after his surgery. The doctors said it was the anesthesia. It was really scary. He would wake up screaming and hysterical but if you tried to console him he would freak out more.. there was just nothing to do but wait it out each night when he woke up... and they couldn't tell me how long this affect from the anesthesia would last.. very scary. He had never had night terrors before and never had them again after that...

 

Also regarding the pain meds, with both my kids the dr. discouraged me from using the pain meds unless they needed it..said to stick with tylenol unless they needed more because the prescription pain meds have other yucky side effects for the kids. I wouldn't force pain meds unless he needs them.

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Arial95, please update us on the tonsil culture as I'm still on the fence about tonsillectomy. My ds's Ts and As are small, he never actually gets the strep throat now, but reacts to exposure, but his titers are still elevated, wondering if strep could be hiding out inside them??

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Just got the call on the results of the culture on the tonils - no strep. I haven't gotten the full report yet, but now I have to question whether the crazy improvement we've seen over the last few days is related to the tonsils being removed...or our first time on Augmentin!!

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Just got the call on the results of the culture on the tonils - no strep. I haven't gotten the full report yet, but now I have to question whether the crazy improvement we've seen over the last few days is related to the tonsils being removed...or our first time on Augmentin!!

Neither of my kids had strep in their tonsils on culture. Probably because of the extensive antibiotics that were used for us. But they both had evididence of chronic infection. Did they say if there was evidence of infection?

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The ENT said that there weren't any signs of infections on the tonsils the day of the surgery - but he didn't mention if there were signs of the chronic infection - I'll have to ask the pediatrician tomorrow - he'll have the full surgery report.

 

The improvements we are seeing are nothing short of miraculous. I was actually complemented on his behavior at lunch yesterday by two strangers - something I never dreamed would happen!!

 

I have already had an email exchange with Dr. Murphy. She seems to think its the Augmentin making the difference - she said she's never seen an improvement like that from the surgery alone so she's supporting our request to the pediatrician to extend the Augmentin.

 

The only negative thing we're seeing is the sleeping issues. He's still waking multiple times during the night - often crying and shaking, sometimes alert, others not. He's waking every morning crying. He's fighting nap times (the only time we're seeing any sort of fits at all is at naptime and bedtime, something we never had happen before - but the magnitude of them is barely worse than a typical tired and cranky 4 year old fighting going to bed). He usually naps 2-3 hours but he's even waking up several times during the naps crying as well.

 

Other than sleeping - he's been remarkable!!!

 

ajcire - I'm relieved to hear that you had night terror issues as late as a week out from the anesthesia - that's been our theroy, but the longer it goes, we're worried the less likely that is. So that's reassuring!

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