Chances of T & A at CHOP?

[kmom]

A little background...DD8-stubborn strep throat from Jan-Mar. 2010. March--family tested. DS + culture=carrier thus tx'd w/ Amox to clear inf. ENT removes DD's tonsils, adenoids and puts in 2nd set of tubes in ears due to double ear inf. and fluid filled ears added to issues. No signs of PANDAS up to this point. ENT does NOT give DD prophylactic abx for surgery (we had no clue) and BOOM, day after surgery mood lability kicks in and 4 wks post surgery, facial/hand tics and OCD and many other PANDAS symptoms kick in within a 2 day period. So bizarre! CHOP psychiatry dx's DD w/ PANDAS but move on to other dr's b/c CHOP too casual about tx. 2 wks. later DS starts to show PANDAS major symptoms. Both kids do not show a rise in titers EVER. Dr. T treats both kids all summer w/ abx and motrin w/ some improvment but not nearly enough. Testing proves immuno deficiency. We start seeing Dr. B. More testing. In the meantime, school starts and kids re-exposed and it's rough. Prednisone given w/results and wait on ins. to apporve IVIg. IVIg went well last week. Seeing improvements! After ph. consult w/ Dr. B yesterday, he says time for DS to have T & A. Great idea in my book BUT will an ENT just do the surgery for PANDAS? Any experience with this? I feel like it's going to be a fight. Called CHOP ENT dept. and set us up for Dec. 17th consultation. I explained situation and said need to be put on cancelation list b/c next IVIg is in Dec. and want to push for surgery b/f 2nd IVIg. Super accomodating. Passed message to nurse and was called within the hour. Bumped us up to this Tues! So worried this will be a waste of time since CHOP,altho the best in Children's Hosp. in country for ENT and other specialties, they are divided on PANDAS Dx. It comes down to dept. and specific doctors. Anyone have experience w/ this or any advice. DS has a strong history of sinus and ear inf. but never a strep throat inf....just carrier status. Also Dr. B. thinks (so do DH and I) that DS has had PANDAS much longer...a more chronic low lying state than DD whose acute symptoms popped up this year.

 

Any advice greatly appreciated!

[Joan Pandas Mom]

Our ENT thought it might help so did agree to do T&A. My DS had that done last Dec. I found it very interesting that the ENT told me after surgery that he was surprised my son's tonsils didn't give him more problems. They were very gravely and ###### (gross). He also said he wouldn't be surprised if they had strept in them. My son had a Culture done about 3 weeks prior to surgery that came back negative. His titers were in the low 1,000. though. My DS was harboring strept in the tissues of his tonsils. I think it was probably there for years.

[JAG10]

I'll PM you

[Fixit]

A little background...DD8-stubborn strep throat from Jan-Mar. 2010. March--family tested. DS + culture=carrier thus tx'd w/ Amox to clear inf. ENT removes DD's tonsils, adenoids and puts in 2nd set of tubes in ears due to double ear inf. and fluid filled ears added to issues. No signs of PANDAS up to this point. ENT does NOT give DD prophylactic abx for surgery (we had no clue) and BOOM, day after surgery mood lability kicks in and 4 wks post surgery, facial/hand tics and OCD and many other PANDAS symptoms kick in within a 2 day period. So bizarre! CHOP psychiatry dx's DD w/ PANDAS but move on to other dr's b/c CHOP too casual about tx. 2 wks. later DS starts to show PANDAS major symptoms. Both kids do not show a rise in titers EVER. Dr. T treats both kids all summer w/ abx and motrin w/ some improvment but not nearly enough. Testing proves immuno deficiency. We start seeing Dr. B. More testing. In the meantime, school starts and kids re-exposed and it's rough. Prednisone given w/results and wait on ins. to apporve IVIg. IVIg went well last week. Seeing improvements! After ph. consult w/ Dr. B yesterday, he says time for DS to have T & A. Great idea in my book BUT will an ENT just do the surgery for PANDAS? Any experience with this? I feel like it's going to be a fight. Called CHOP ENT dept. and set us up for Dec. 17th consultation. I explained situation and said need to be put on cancelation list b/c next IVIg is in Dec. and want to push for surgery b/f 2nd IVIg. Super accomodating. Passed message to nurse and was called within the hour. Bumped us up to this Tues! So worried this will be a waste of time since CHOP,altho the best in Children's Hosp. in country for ENT and other specialties, they are divided on PANDAS Dx. It comes down to dept. and specific doctors. Anyone have experience w/ this or any advice. DS has a strong history of sinus and ear inf. but never a strep throat inf....just carrier status. Also Dr. B. thinks (so do DH and I) that DS has had PANDAS much longer...a more chronic low lying state than DD whose acute symptoms popped up this year.

 

Any advice greatly appreciated!

 

our ent did not want to take them out they looked fine...i pressed on.....

upon removal he also said they were pitted and gravelly, inflamed and had stuff on them....

his statement was"well of course they were that way, with his strep history!"

i thinking..didn't you say they look fine..of cours i didn't..getting ready to do dh an ds7

we have regained some of the ground we lost since doing the TA

[colleenrn]

Chances are he is a carrier b/c his tonsils and/or adenoids are harboring strep. My son just had a T and A 5 days ago. he had been on zithromax for 2 years and our ENT said they did not look bad when she examined him, but agreed to remove them based on PANDAS, based on that it helped his brother and sister when they had theirs out, and I said he snored (does not that often, but I knew that would help to make my case). After surgery, our ENT said they were very scarred and she coulod tell they had been infected repeatedly. This is common- the dr says they don't look bad until they get them out.

 

Some ENT's are more apt to remove them and some ENT's insist on a certain # of infections. If you are working with Dr. T, tell them your PANDAS dr suggests removing them or have him contact your ENT. Good luck. I think most children with PANDAS would benefit from a T and A.

Colleen

[ajcire]

Ditto the others... the ENT said at first glance my son's tonsils looked fine... once removed they were a shrivelled up infected mess that definitely were better off out.

[thereishope]

I think it depends on the ENT. The ENT I went to wanted to remove tonsils due to PANDAS. He had only 2 strep infections in his life at that time.I didn't even have to ask about it.

[Joan Pandas Mom]

I agree with you Colleen, by removing them you remove a potential host.

[tpotter]

I PM'd you.

[kmom]

Thank you all for your posts and PM's. We had our appt with the CHOP ENT today. I went in armed with all the test results and a letter from Dr. B recommending the procedure and the official dx of PANDAS. I actually felt a little optimistic due to the fact that CHOP was originally not seeing us until Dec. 17th but the after explaining the situation the nurse opted to bump us up and got us in w/in days of calling. I thought that was a good sign! NOT the case. As my kids would say, the appt. went over like a "toot in church!--not good!"--sorry but that is the nicest way to explain how I felt afterward. I must be spoiled by the compassionate PANDAS docs we've been blessed to work with b/c this guy was your typical arrogant dr. who wouldn't bend. And I understand he has his beliefs and rules on how he practices medicine but he by no means was going to do it in a nice way. He said said, "The NIH does not recommend a T & A for the treatment of PANDAS so I will not agree to do the surgery for that reason." I told him how I understand PANDAS is a controversial dx and he said, "No it's not controversial." That pushed my mother bear buttons. I let him talk but at the end I told him, "Well what I mean when I say PANDAS is controverisal is this: CHOP neurology wants to hand out Zoloft when you come in with PANDAS symptoms and ironically your psych dept who originally dx'd my DD actually didn't go that route which was shocking...thought it would be the other way around but that Dr. believed in the infectious cause for this to pop up overnight. So how do you have different dept's under the same umbrella of such a great reputation NOT agree on treatment!? As the mom of 2 PANDAS kids, sounds pretty controversial to me." He was finally speechless for just a moment, lost a bit of his arrogance and said, "Well I understand why you feel that way but PANDAS is a rare autoimmune disorder." In the end he said if there is another reason to deem the T & A medcially necessary, he'll do the surgery but PANDAS isn't one of them. So he signed my DS up for a sleep study at the hospital. (Great, one more hoop to jump thru!) If the study shows sleep distrubances, etc. he can do it. I asked if he'll do both T & A or just A and he said, "Let's just wait till after the study and talk." And I said to myself, "Only if I'm desperate buddy." There's gotta be another ENT out there w/ a better bedside manner and who is more willing to help.

 

Sorry for the the wordy story...just need to vent.

[JAG10]

Call the guy I PM'd you. DON'T say you heard he did it on the rec' of a PANDAS doc from another mom on the internet; THAT will be the kiss of death for your appt.!!! Just act like you happen upon him and present Dr. B's recommendation. My rec' came from Dr. K, so he probably won't put the two together....

 

He got my dd7 in the OR in 10 days.

Edited November 2, 2010 by JAG10

[kmom]

Wow! JAG 10, thanks! That's the timing I am looking for! Mums the word!