andenotonsillectomy

[CSP]

Hello all,

 

I normally post on the TS page, but thought I would get a better response here.

 

My son DX TS, is sched. to see an ENT this week and I know the information on adenotonsillectomy has mixed reviews. My question is how many of you all have had this done for your child? Does your child have TS, PANDAS, or Synenham's Chorea?

 

I'm checking into it because my son does have huge tonsils and he has never been able to breath through his nose. My husband has the same problem. My husband also has sleep apnea and we do believe our son does too. So these are the reasons we are thinking about the adenotonsillectomy. Tho I'm scare to go this route, but would love to report good news if it helps.

 

How should I handle this? Do I have my son on ABX before, and how long after?

 

Thanks,

CP

[thereishope]

To clarify, is that the same as having tonsils and adenoids removed or is it something different?

[dcmom]

CSP- My daughters both hat T&A surgery done, one in first grade, the other in K. The first daughter had it because she developed sleep apnea after strep throat. Recovery was easy, and her sleep apnea resolved immediatley. (it had been really affecting her energy level)

 

My second daughter had T&A for pandas (ocd). She had a pandas episode one week later. I am still glad we did the surgery, although it didn't help the pandas issues thus far. I would strongly suggest: antibiotics for 10 days prior, IV antibiotics during or immediately after, and at least 10 days of antibiotics after.

 

I guess I would suggest doing it if your son does have sleep apnea. Lack of good sleep is a major problem with pandas, and I assume with TS as well.

 

Good luck!

 

Eileen

[thereishope]

By judging by dcmom's reply, it is the same thing. My son had t and a surgery in Feb this year solely because he had PANDAS and they were hoping to reduce the number of strep infections. PANDAS is his only diagnosis. He had a + strep test a month after surgery. But is now 7 1/2 month strep free.

 

I agree that you need antbiotics for a good amount of time. MY ENT did the standard 3 days after. So make sure you discuss that with your doctor.

 

A psychologist my son briefly saw said she once had a boy who came in for a ADD diagnosis and once they realized he actually had sleep apnea, they removed his tonsils and he he no longer fit the criterea for ADD. He was just overtired all the time from lack of sleep.

 

Does anesthesia affect tics in TS? Someone on here had the idea that the anesthesia could play a role in PANDAS symtoms resurfacing after surgery. I don't know if it affects TS. That's something else to research.

[CSP]

OOPS!!

 

I spelled it wrong, but yes it is the same thing as tonsils and adenoids.

 

Thank you dcmom, and vickie, I will ask about the anesthesia, I think that is what I am most worried about.

 

Any adults out there who had tonsils removed as a child and remember having PANDAS/TS/OCD issues that got better with the removal of T&A?

 

CP

[dcmom]

My ent told me he has seen a paper about a boy with pandas that cleared up after T&A. I always wonder about these studies, though, because I don't think they follow the kids for very long...

[bronxmom2]

Hi, my son had a T&A last March, and though it didn't stop the PANDAS, I think it did do a lot to get the raging strep under control so we could at least focus on the PANDAS. Recovery was difficult (3 weeks of pain), but I am so glad we did it.

 

This is purely anecdotal, but my older sister had a T&A when she was 3 years old because of chronic "tonsillitis" as they called it then. She probably had (actually, has) ADHD-- she was really naughty, and she is still a mess, but she is functional. She never developed PANDAS and had no more problems with strep. I had strep constantly but my tonsils were never removed (why???) and I did develop PANDAS, though because my sister was so naughty I suffered quietly and nothing was ever done about it. I had no school problems but I had OCD and was suicidal by age 16.

 

Anyway now that I understand PANDAS and finally understand what was happening to me, I wonder how my life might have been different if I'd had that T&A. I am glad I did it with my son and will do it with my baby if he shows any signs of anything.

[matis_mom]

My son had them out too back in August upon recommendation from his PANDAS doctor. He was already on abx because of systemic strep. His recovery was difficult, lots of swelling and pain. The ENT gave him some pain-killer with codeine (sp?) in it, which did nothing for the pain, just made him sort of hyper and unable to sleep well. Pandas doctor changed abx to Cipro for 10 days after tonsillectomy, and added Nystatin along with it. She also recommended we ditch the pain killer the ENT prescribed and just stick with Motrim/Tylenol for pain management.

So I would say if your doc is recommending it, go ahead. Just make sure you have the right prescriptions to help with the recovery.

The procedure itself was very quick, less than 20 minutes, and we had no complications from the anesthesia.

Good luck!

 

Isabel

[NVAmom]

Hello all,

 

I normally post on the TS page, but thought I would get a better response here.

 

My son DX TS, is sched. to see an ENT this week and I know the information on adenotonsillectomy has mixed reviews. My question is how many of you all have had this done for your child? Does your child have TS, PANDAS, or Synenham's Chorea?

 

I'm checking into it because my son does have huge tonsils and he has never been able to breath through his nose. My husband has the same problem. My husband also has sleep apnea and we do believe our son does too. So these are the reasons we are thinking about the adenotonsillectomy. Tho I'm scare to go this route, but would love to report good news if it helps.

 

How should I handle this? Do I have my son on ABX before, and how long after?

 

Thanks,

CP

 

Hi CP, I know that is a difficult decision to make. My son was diagnosed with tourette's in first grade. We have learned within the last 3 months he was misdiagnosed and he actually has PANDAS.

 

He had his adenoids removed in preschool. They were doing an endoscopy and bronchoscopy due to chronic croup and reflux and determined the adenoids need to be removed during that procedure. The only real change we noticed after that was he no longer snored.

 

My son had his tonsils removed in first grade. He is now in 5th grade. He was also in his first full blown PANDAS episode but we did not know what it was at that time. Looking back I realize the seperation anxiety, social anxiety, defiance and OCD dramatically decreased after the the tonsils were removed but no real change in his vocal tic. However, at the time he was also working with a counselor. I remember thinking that it did not seem like the counselor was doing anything specifc to help him but figured I must be wrong because he was improving. Looking back I definitely feel it was removing the tonsils that helped. At that time, my dtr and I were getting strep at least 4-6x a year. It has been 4 years and we have had strep 1 - 2 xs.

 

Hope that helps! Debby

[memom]

We did it this August as suggested by Dr Latimer because of repeated strep despite my dd 17yo. It was the first tangible thing that started her healing from Pandas. All the CBT and Psychiatry for the 10 months previous to this never really touched the OCD and chorea. I agree, difficult recovery, but I would do it again in a heartbeat. No one suggested antibiotics prior to and after her surgery and I wish they had. I would insist on it. High doses motrin after the first few days of narcotics also helped clear her brain (I was giving her 800mcg every 6 hours). She had cronic sore throat for years with pitted swollen tonsils. Now she comments on how her throat never hurts anymore!

 

Ellie

[CSP]

WOW!!! You all are wonderful!!

 

Thank you sooo much this really helps me, if anything I feel better. I'm wondering if during the recovery he would be in so much pain he would not make his vocals? He only has vocals and we notice that he does not tic when he is not feeling well.

 

I really hope I have good news to share with you all. He sees the ENT Thurs. so if we can get the ABX for 10 days this will get him through Thanksgiving, I would hate to have this done to a 16yo who at this age loves to eat.

 

If you all could for even just for a moment remember him in your prayers.

 

Thanks again you all have been great!!

 

CP

[matis_mom]

WOW!!! You all are wonderful!!

 

Thank you sooo much this really helps me, if anything I feel better. I'm wondering if during the recovery he would be in so much pain he would not make his vocals? He only has vocals and we notice that he does not tic when he is not feeling well.

 

I really hope I have good news to share with you all. He sees the ENT Thurs. so if we can get the ABX for 10 days this will get him through Thanksgiving, I would hate to have this done to a 16yo who at this age loves to eat.

 

If you all could for even just for a moment remember him in your prayers.

 

Thanks again you all have been great!!

 

CP

Our ENT said he has seen kids who are eating cheeseburgers the day after the surgery, maybe he'll be one of those lucky ones!

[Debbie1]

Hi CSP,

 

We will be having the t&a surgery done on all three of our children in a few weeks. Two have a PANDAS dx. All three have had extremely high titers that we have not been able to get in the normal range.

 

I spoke to two neurologists, the ENT and my pediatrician about the surgery. They all felt the risks of the surgery were so minor in comparison to the potential benefits. They all recommend doing it.

 

My kids are currently on abx and will continue until the surgery (scheduled for the end of December). They will be getting IV antibiotics right before surgery and then will be on 10 days of abx following.

 

Good luck and keep us posted!

 

Debbie

[CSP]

Thank you Debbie1,

 

I think this is why I'm willing to try this because the Dr. thought it won't hurt him.

 

Now I was on the ENT's web page and I was so excited because he has pages of the PANDAS/PITANDS info. So I fell like I will be talking with a Dr. I don't have to educate.

 

Most of you all may not know my son's story, but he exploded with screaming 6 weeks after having 2 shot at 12yo. I'm confused about the PITANDS and where it says "possable recent exposure to childhood vaccination." Does this mean the strep preceded the vaccines and then after the vaccines all h### broke. So the PANDAS/PITANDS is really the same thing? Anyone know what I mean and could explain?

 

I hope you are right, mati's mom, he would love to eat a few cheesburgers.

 

CP

[faith]

mmmm. so would I..... .....

 

Hi CP! .... (waving frantically from over yonder)