Visit With ENT

[Doug]

Hello everyone, we took Lauren to her ENT Doctor today, she had ear tubes put in her ears 3 years ago. She has only 1 tube in now and just sitting on the ear drum and he feels it will work its way out. We asked him about PANDAS and explained our daughters situation and symptoms, he stated he has never seen PANDAS and doesn't know much about it., but if you want to avoid getting strep you should take out the Tonsils and thats what he would do if it was his kid. What are your thoughts on this? Lauren has done real good and has only had a few minor symptoms we are planning a consultation with Dr. K on Febuary 5th and we have IVIG set up in Denver with Dr. Tom Smith if he feels necessary. The Most puzzling piece is that Lauren has never tested posative for Strep and her Titers have always been low. We have run every blood test in the book, but are still waiting the results of the Prevnar Vaccine test. " The lab screwed it up " everthing has come back normal. All we know is she had two major exacberations of symptoms that lasted months immdediatley following a fever and a sore throat. ( That appears to be Viral driven, they called it a Coxsackie type virus but it was never cultured.) Any Advice or is there something missing.

Thanks, Doug

[szcasey]

Hi Doug,

I'm relatively new to PANDAS so I can't answer your qx on PAndas. However, I had my tonsils out at 13 and I still get strep. I'm 41 and currently being treated with abx for strep. My advice is to get a second opinion.

 

Good luck and best,

Sarah

 

 

Hello everyone, we took Lauren to her ENT Doctor today, she had ear tubes put in her ears 3 years ago. She has only 1 tube in now and just sitting on the ear drum and he feels it will work its way out. We asked him about PANDAS and explained our daughters situation and symptoms, he stated he has never seen PANDAS and doesn't know much about it., but if you want to avoid getting strep you should take out the Tonsils and thats what he would do if it was his kid. What are your thoughts on this? Lauren has done real good and has only had a few minor symptoms we are planning a consultation with Dr. K on Febuary 5th and we have IVIG set up in Denver with Dr. Tom Smith if he feels necessary. The Most puzzling piece is that Lauren has never tested posative for Strep and her Titers have always been low. We have run every blood test in the book, but are still waiting the results of the Prevnar Vaccine test. " The lab screwed it up " everthing has come back normal. All we know is she had two major exacberations of symptoms that lasted months immdediatley following a fever and a sore throat. ( That appears to be Viral driven, they called it a Coxsackie type virus but it was never cultured.) Any Advice or is there something missing.

Thanks, Doug

[Suzan]

Hello everyone, we took Lauren to her ENT Doctor today, she had ear tubes put in her ears 3 years ago. She has only 1 tube in now and just sitting on the ear drum and he feels it will work its way out. We asked him about PANDAS and explained our daughters situation and symptoms, he stated he has never seen PANDAS and doesn't know much about it., but if you want to avoid getting strep you should take out the Tonsils and thats what he would do if it was his kid. What are your thoughts on this? Lauren has done real good and has only had a few minor symptoms we are planning a consultation with Dr. K on Febuary 5th and we have IVIG set up in Denver with Dr. Tom Smith if he feels necessary. The Most puzzling piece is that Lauren has never tested posative for Strep and her Titers have always been low. We have run every blood test in the book, but are still waiting the results of the Prevnar Vaccine test. " The lab screwed it up " everthing has come back normal. All we know is she had two major exacberations of symptoms that lasted months immdediatley following a fever and a sore throat. ( That appears to be Viral driven, they called it a Coxsackie type virus but it was never cultured.) Any Advice or is there something missing.

Thanks, Doug

 

I have one daughter (8) who had horrible tonsils and adenoids, very large and caused her all kinds of trouble. They were removed 3 yrs ago. I have another daughter (7) who's tonsils look great and have not caused her trouble. They both have PANDAS and have both had similar issues with strep.

 

After my 8 yr old had her tonsils out, she stopped getting strep in her throat but she still has trouble with strep elsewhere. My 7 yr old doesn't get strep in her throat now it seems either. They both have low titers as well.

 

So I guess that's a long way of saying that if Lauren's tonsils look good and she does not get strep in her throat, I would be inclined to leave them in if there is nothing wrong with them. That's the stance I'm taking anyway with my 7 yr old. I just hope she doesn't end up having trouble when she gets older because then I'll be wishing I went ahead and did it now, you know?

 

Susan

[KeithandElizabeth]

Hi Doug:

 

I know a few people who have children with PANDAS is our town and they did do the T&A surgery. However, their kids still got strep in their sinuses and their guts.

 

Elizabeth

[peglem]

My daughter did not even get a short respite from strep when she got her tonsils out....but she hasn't had inflamed tonsils since then!

[thereishope]

My son did get strep after t and a. However, is should add all 3 of my kids had strep that time so odds were against him. Now "knock on wood, please don't let me jinx myself"....he has not had strep again sicne then. his last strep infection was March 2009.

 

I can only give my personal opinion. My son may get strep again. I know that and I will never feel like we are out of the woods. But I also don't know how many time the t and a has kept him from getting strep.

 

I have large tonsils, they never took them out. I wish they did.

 

Now I can share with what I wish I did with his surgery....

 

Now, if you decide to have surgery, please wait until she's recovered for a good amount of time. That way, in the event, she does have an exacerbation, her body will be fully recovered from the last one and you're not adding more problems to ones that were still there. Also, so your family has a break.

 

I would recomend having it done during the summer when strep isn't rampant and she has ample time to heal if any problem should occur, w/o interfering with school.

 

Make sure she gets abx before surgery and post surgery. Try to get a month post surgery. Not the 3-5 days they often give.

 

Some have even gotten abx via iv during surgery in case the child is exposed during surgery.

 

One mom posted she had an rx for a streoid on hand post surgery in the event any issues started to arrrise.

 

With our kids you have to always have the idea "hope for the best, but be prepared for the worst". Don't expect the worst every time, but be prepared for it.

[faith]

Doug,

I would get a second opinion as well. your doctor has stated he never seen PANDAS and does not know much about it. So he is just making a blanket statement that if you want to avoid strep, then get the tonsils out. he is assuming that you want to avoid strep because you told him your daughter has PANDAS.

 

you say your child doesn't really have problems with strep in the past and titers are low. We have the exact thing as well.

 

However, we've recently gone to an ENT, but my son's problem is large tonsils, with some breathing issues at night. I too wanted to see if there was anything I was missing regarding these big tonsils and swollen glands that he always seems to have. our doc knows PANDAS and did not think strep issues were our problem. he also stated that it seems to go both ways, some (I am guessing who have strep related problems) have fared well, and some have not, in other words, didn't help symptoms, or didn't prevent future strep. You can STILL get strep after the tonsils are out, and having them out does not guarantee anything.

 

That said, we are contemplating doing the T&A and probably will because my son has the large tonsils and swollen glands and we see he has breathing problems while sleeping (apnea), along with being underweight for his age, (sometimes large tonsils cause low appetite due to uncomfortability eating and swallowing) so hoping to alleviate those problems. (poor breathing/,sleep, poor eating) We are not doing it for PANDAS reasons.

 

Faith