tonsils and adenoids & PANDAS

[ghostrider]

I will like to know how many kids have tonsils and adenoids removed and did the PANDAS symptoms came after those were removed. I am trying to think if removal of those 2 enable these antibodies to reach basal ganglia. Please post about your kids.

 

Thanks

Edited May 31, 2010 by ghostrider

[colleenrn]

My daughter had her tonsils and adenoids removed when she was 6. She was strep free and PANDAS symptom free for 1 1/2 years. She then got strep and eventually we put her on prophylactic antibiotics, which she is still on. She is will be 14 this year.

 

My son had his removed when he was five. It definitely helped him, especially b/c he would get some sleep apnea whenever he was sick b/c the adenoids would enlarge.

 

I think in both cases things would be worse now if they had not had them removed. The ENT commented that they were large and cryptic, making it impossible for the antibiotic to get rid of all the strep.

 

We are now considering doing the same with my two younger sons as they get strep and have sleep apnea episodes when sick. The one thing I would recommend is that the child be on a treatment dose of antibiotics prior to the surgery. There are some old posts of Dr. T's where he talks about the different pathogens he has found when doing a biposy of the tonsils.

 

Colleen

[ghostrider]

My daughter had her tonsils and adenoids removed when she was 6. She was strep free and PANDAS symptom free for 1 1/2 years. She then got strep and eventually we put her on prophylactic antibiotics, which she is still on. She is will be 14 this year.

 

My son had his removed when he was five. It definitely helped him, especially b/c he would get some sleep apnea whenever he was sick b/c the adenoids would enlarge.

 

I think in both cases things would be worse now if they had not had them removed. The ENT commented that they were large and cryptic, making it impossible for the antibiotic to get rid of all the strep.

 

We are now considering doing the same with my two younger sons as they get strep and have sleep apnea episodes when sick. The one thing I would recommend is that the child be on a treatment dose of antibiotics prior to the surgery. There are some old posts of Dr. T's where he talks about the different pathogens he has found when doing a biposy of the tonsils.

 

Colleen

Colleen

So your kids had PANDAS before the tonsils and adenoids were removed ? Does your 2 younger sons have PANDAS who have sleep apnea ? I am trying to see if removing tonsils and adenoids causes PANDAS .

[peglem]

My child had PANDAS both before and after T&A.

[Joan Pandas Mom]

My son had T&A in Mid December. He had been on abx for 7 1/2 weeks prior to T&A. About 13 days post T&A he seemed great for about 3 weeks, then the symptoms returned. He had a negative throat culture a week or so before T&A that came out negative yet the ENT said his Tonsils were gritty and ###### and wouldn't be surprised if there was strep in there.

[7upMom]

My 9 y/o son is 6 wks post IVIG right now and has had PANDAS for years. He is scheduled for a t&a in July. Dr K said 12 weeks out from IVIG he should be just fine and he had no problem with this procedure being done. Our ENT doc is doing it hospitalization though with highdose antibiotics before ( tbd what kind yet), iv of antibiotics during and highdose antibiotics after for a longer time than normal. He also will be culturing the tonsils, just for his own curiousity. My son was having a very bad ocd day when we were at his office and it took him 25 minutes to get from one side of the room to the nurse and then cont'd on thru the whole visit and the doctor was just fascinated by him, so it really peaked his PANDAS curiousity! We are doing the t&a because he wears a cpap machine at night due to sleep apnea, we are hoping this will make it able for him to get rid of the cpap ( :

[matis_mom]

So your kids had PANDAS before the tonsils and adenoids were removed ? Does your 2 younger sons have PANDAS who have sleep apnea ? I am trying to see if removing tonsils and adenoids causes PANDAS .

The thinking is the tonsils and adenoids are simply strep hideouts after the child has had strep repeatedly, and so even with antibiotics, you can't get to the strep really, as they tonsils have become an absess which blocks the antibiotics. At least that's the way my dr. explained it to me. She said they've had patients on antibiotics for months with NO results, but once the tonsils came out, they started seeing progress. In their practice they recommend T&A for both strep and Lyme.

The idea is the less strep you have hanging around, the fewer ANTIBODIES your body will produce, and with PANDAS it's the antibodies that cause the trouble.

So no, removing tonsils and adenoids does not cause PANDAS, but if not treated properly with antibiotics before and after the surgery you may see and increase in symptoms just because you are "exposing" the strep, so to speak. Very unscientific explanation, I hope it makes sense!

[colleenrn]

They had PANDAS prior to surgery. We removed them b/c they were a source of infection in both kids and also sleep apnea in my son. My other two children that we are considering a T & A also have PANDAS. A T & A will not cause PANDAS, but IMO, you have to aggressively erradicate any strep prior to surgery and also follow upo with antibiotics post surgery.

Colleen

[saidie10]

I will like to know how many kids have tonsils and adenoids removed and did the PANDAS symptoms came after those were removed. I am trying to think if removal of those 2 enable these antibodies to reach basal ganglia. Please post about your kids.

 

Thanks

 

My son actually had strep about 5 times before we had the T&A removed. His tics and crazy anxiety and aggressive behavior started sometime during that period and the sudden onset OCD started exactly five days after his last known positive infection. He had his T&A removed about one month after that last know infection (August 2009) and did not have another "exacerbation" until February 2010 when his brother tested positive for strep. I truly think in our case, it helped my son not spiral out of control after that last infection. We will likely be having his brothers tonsils removed this summer as well.

[ajcire]

Dr. T explained it to me as that if you don't treat with antibiotics before and after it that it's like changing a filter on an air filter... you take it out and all the dust starts flying around... so if you don't treat the strep before when you mess with the tonsils you are now exposing it all around. At least that is how I understood it when he explained it to me.