Tonsillectomy

[emma]

I have been using this site for a long time as a resource but only tonight became a "registered" user. Thank you to all of you that have been contributing to this site. It has been so nice to find a place where others know the equisite pain of parenting a child with these types of problems and share support and advice! My daughter, Aubrey, is 10 and has suffered greatly with a PANDAS diagnosis for over 18 months. There is a long list of treatments including IVIG which we have tried. Last Friday I had her tonsills removed in hopes of at least preventing any future cases of strep. Tonight her PANDAS symptoms appear to be on the rise and I was wondering if anyone else has seen this type of response to a tonsillectomy? If yes, I would love to hear if you you found any medicine or supplements especially helpful.

[peglem]

I have been using this site for a long time as a resource but only tonight became a "registered" user. Thank you to all of you that have been contributing to this site. It has been so nice to find a place where others know the equisite pain of parenting a child with these types of problems and share support and advice! My daughter, Aubrey, is 10 and has suffered greatly with a PANDAS diagnosis for over 18 months. There is a long list of treatments including IVIG which we have tried. Last Friday I had her tonsills removed in hopes of at least preventing any future cases of strep. Tonight her PANDAS symptoms appear to be on the rise and I was wondering if anyone else has seen this type of response to a tonsillectomy? If yes, I would love to hear if you you found any medicine or supplements especially helpful.

 

My daughter had a tonsillectomy in response to chronic strep with PANDAS. The strep (and PANDAS) came right back. She does have fewer sinus problems though.

[emma]

I have been using this site for a long time as a resource but only tonight became a "registered" user. Thank you to all of you that have been contributing to this site. It has been so nice to find a place where others know the equisite pain of parenting a child with these types of problems and share support and advice! My daughter, Aubrey, is 10 and has suffered greatly with a PANDAS diagnosis for over 18 months. There is a long list of treatments including IVIG which we have tried. Last Friday I had her tonsills removed in hopes of at least preventing any future cases of strep. Tonight her PANDAS symptoms appear to be on the rise and I was wondering if anyone else has seen this type of response to a tonsillectomy? If yes, I would love to hear if you you found any medicine or supplements especially helpful.

 

My daughter had a tonsillectomy in response to chronic strep with PANDAS. The strep (and PANDAS) came right back. She does have fewer sinus problems though.

 

How old is your little girl? How long ago did you have the tonsillectomy and was she treated with antibiotics for some time after the surgery?

[thereishope]

My 5 year old had his tonsils out to try to prevent strep. He was on antibiotics for only 3-5 days after to prevent infection from surgery. He did end up getting strep again about a month later.He was not on proph antibiotics. Right now, knock on wood, he has been strep free for 5 months. I did not notice any symptoms reappearing shortly after surgery.

 

Did she have any PANDAS symptoms immediately prior to surgery? And how is she "reacting" to the surgery? Was she overly nervous about it? Is she having a hard time healing? I ask because stress can cause a slight setback.

 

I have hope that having his tonsils out will benefit my son. I know one PANDAS teen who said she had hers out because of being a strep carrier. She continued to get strep for a long time after having her tonsils out and she said one day it just stopped. She has been strep free for maybe a year and a half now, no proph antibiotics either. Like I said, that gives me hope.

[dcmom]

Hi Emma,

 

This is where we are right now.

 

Pandas dd, age 6 had her first pandas episode this winter. We treated her aggressively with antibiotics. She returned to baseline after a month. We enjoyed a month of no pandas symptoms. We then had her tonsils removed (as per 2 neurologists, and and ENT). Exactly 1 week later, the pandas came back. She did full strenght antibiotics 10 days before, and 5 days after surgery. I haven't had her cultured, yet. She is now at about week 6 of this episode, and things seem to be turning around.

 

I definately feel this episode was due to either: anasthesia or physical stress of surgery opening the blood brain barrier, or exposure to strep in surgery.

 

I am still glad, however, that we had the tonsils removed. If it can prevent one or two strep episodes in her future- it is worth it. I wanted to have it done before we considered IVIG or PEX.

 

If I had to do it over, I would keep her on full strenght antibiotics for about a month post surgery. Unfortunately, at the time when we needed the antibiotics, both of her pandas doctors were unavailable for a month. Luckily, though, it is summer- so many of her issues were not as big of a deal not having to go to school.

 

How long ago did your child have surgery?

[peglem]

I have been using this site for a long time as a resource but only tonight became a "registered" user. Thank you to all of you that have been contributing to this site. It has been so nice to find a place where others know the equisite pain of parenting a child with these types of problems and share support and advice! My daughter, Aubrey, is 10 and has suffered greatly with a PANDAS diagnosis for over 18 months. There is a long list of treatments including IVIG which we have tried. Last Friday I had her tonsills removed in hopes of at least preventing any future cases of strep. Tonight her PANDAS symptoms appear to be on the rise and I was wondering if anyone else has seen this type of response to a tonsillectomy? If yes, I would love to hear if you you found any medicine or supplements especially helpful.

 

My daughter had a tonsillectomy in response to chronic strep with PANDAS. The strep (and PANDAS) came right back. She does have fewer sinus problems though.

 

How old is your little girl? How long ago did you have the tonsillectomy and was she treated with antibiotics for some time after the surgery?

 

My daughter is 14. She had her tonsils out @ 3 years ago. After the surgery she was on, I think, 14 days of amoxicillan. But she wasn't checked for strep for easily 6 weeks after surgery...nobody wanted to swab her healing throat, and it was assumed that she would not get anymore strep infections. About 2 months after the surgery, she was in really bad shape, PANDAS-wise and was put back on antibiotics. It took another 3 months or so to finally get prophylactic Abx.

[EAMom]

What antibiotic is your dd on? (Also, how much does she weigh and what dose does she get?)

[emma]

I have been using this site for a long time as a resource but only tonight became a "registered" user. Thank you to all of you that have been contributing to this site. It has been so nice to find a place where others know the equisite pain of parenting a child with these types of problems and share support and advice! My daughter, Aubrey, is 10 and has suffered greatly with a PANDAS diagnosis for over 18 months. There is a long list of treatments including IVIG which we have tried. Last Friday I had her tonsills removed in hopes of at least preventing any future cases of strep. Tonight her PANDAS symptoms appear to be on the rise and I was wondering if anyone else has seen this type of response to a tonsillectomy? If yes, I would love to hear if you you found any medicine or supplements especially helpful.

 

My daughter had a tonsillectomy in response to chronic strep with PANDAS. The strep (and PANDAS) came right back. She does have fewer sinus problems though.

 

How old is your little girl? How long ago did you have the tonsillectomy and was she treated with antibiotics for some time after the surgery?

 

My daughter is 14. She had her tonsils out @ 3 years ago. After the surgery she was on, I think, 14 days of amoxicillan. But she wasn't checked for strep for easily 6 weeks after surgery...nobody wanted to swab her healing throat, and it was assumed that she would not get anymore strep infections. About 2 months after the surgery, she was in really bad shape, PANDAS-wise and was put back on antibiotics. It took another 3 months or so to finally get prophylactic Abx.

 

Wow. I continue to be struck by how many wrong assumptions the medical professionals. How long did you use phrophylactic antibiotics?

[emma]

My 5 year old had his tonsils out to try to prevent strep. He was on antibiotics for only 3-5 days after to prevent infection from surgery. He did end up getting strep again about a month later.He was not on proph antibiotics. Right now, knock on wood, he has been strep free for 5 months. I did not notice any symptoms reappearing shortly after surgery.

 

Did she have any PANDAS symptoms immediately prior to surgery? And how is she "reacting" to the surgery? Was she overly nervous about it? Is she having a hard time healing? I ask because stress can cause a slight setback.

 

I have hope that having his tonsils out will benefit my son. I know one PANDAS teen who said she had hers out because of being a strep carrier. She continued to get strep for a long time after having her tonsils out and she said one day it just stopped. She has been strep free for maybe a year and a half now, no proph antibiotics either. Like I said, that gives me hope.

 

Aubie had a several good months over the winter which we wrongly celebrated as indicating the end of PANDAS. On April 17th she got sick with strep and over the course of 3 days she lost the ability to read, write, speak and had massive large motor tics. She missed the last 3 months of school and was making progress on recovering some of the lost abilities just prior to the tonsillectomy. She wasn't terribly stressed about having the surgery and she seems to be healing appropriatly from the surgery but she did have a hard time waking up with the anesthesia so that is likely a factor too. Also, I have Aubie on a long list of supplements and they required that I take her off of those a full week prior to the surgery so I am wondering if that didn't also set her up for a rougher recovery.

[emma]

Hi Emma,

 

This is where we are right now.

 

Pandas dd, age 6 had her first pandas episode this winter. We treated her aggressively with antibiotics. She returned to baseline after a month. We enjoyed a month of no pandas symptoms. We then had her tonsils removed (as per 2 neurologists, and and ENT). Exactly 1 week later, the pandas came back. She did full strenght antibiotics 10 days before, and 5 days after surgery. I haven't had her cultured, yet. She is now at about week 6 of this episode, and things seem to be turning around.

 

I definately feel this episode was due to either: anasthesia or physical stress of surgery opening the blood brain barrier, or exposure to strep in surgery.

 

I am still glad, however, that we had the tonsils removed. If it can prevent one or two strep episodes in her future- it is worth it. I wanted to have it done before we considered IVIG or PEX.

 

If I had to do it over, I would keep her on full strenght antibiotics for about a month post surgery. Unfortunately, at the time when we needed the antibiotics, both of her pandas doctors were unavailable for a month. Luckily, though, it is summer- so many of her issues were not as big of a deal not having to go to school.

 

How long ago did your child have surgery?

 

Aubie had surgery on Friday, August 7th so we are in the early days. She has been on prophylactic antibiotics for many months and is now on a higher dose twice daily but it doesn't appear to be having a big impact. Aubie had a rough time with anasthesia so perhaps that too was a big contributor. Aubie has also been on a long list of supplements that I was required to stop a full week before the procedure so that may have set her up for a harder time too. I feel like I don't know for sure what the right moves are and the doctors in our life seemed to have conflicting feelings about the tonsillectomy but it made sense to me to do it. Next week I have an appointment at a highly regarded clinic in Lenox Mass where they will test her blood for all sorts of things that the conventional doctors don't typically concern themselves with in the hopes of finding more information to lead us to more healinig. The treatment they suggest will all be based in diet and supplements so nothing invasive!

[emma]

What antibiotic is your dd on? (Also, how much does she weigh and what dose does she get?)

 

Aubie is very underweight right now at about 66 pounds, she is almost 5 feet tall. She has 400 mg of Amox 2x a day. I have had her on differing amounts of Amox for many months. Do you think there is a better antibiotic or dose to consider?

[peglem]

Last year my daughter, who was already underweight was dropping pounds on a regular basis. Somebody on an autism forum suggested supplementing zinc to increase appetite and it did work for her. She's still on the slim side but not unhealthy scrawny like she was.

[colleenrn]

My daughter had her tonsils and adenoids removed when she was 6. She was on prophylactic antibiotics until 2 days before surgery. I don't remember if she was given antibiotics IV during surgery, but I know she was on NO antibiotics following surgery. She was symptom free for exactly 1 1/2 years, at which time she woke up one morning with PANDAS symptoms returned

 

My son had his tonsils and adenoids removed when he was 5. I don't remember if he had antibiotics during surgery, but he was not on them prophylactically before or after surgery. His PANDAS symptoms came back much sooner- maybe within 6 months. He did not begin prophylactic antibiotics until he was almost 8.

 

IF I could do it over agian, there is NO question whatsoever, that I would make sure they were given IV antibiotics during or following surgery. I would also definitely put them on prophylactic antibiotics following surgery.

 

Colleen

[NancyD]

Keep in mind...strep may be hiding in many other places in the body other than the tonsils.

 

Nancy

 

My daughter had her tonsils and adenoids removed when she was 6. She was on prophylactic antibiotics until 2 days before surgery. I don't remember if she was given antibiotics IV during surgery, but I know she was on NO antibiotics following surgery. She was symptom free for exactly 1 1/2 years, at which time she woke up one morning with PANDAS symptoms returned

 

My son had his tonsils and adenoids removed when he was 5. I don't remember if he had antibiotics during surgery, but he was not on them prophylactically before or after surgery. His PANDAS symptoms came back much sooner- maybe within 6 months. He did not begin prophylactic antibiotics until he was almost 8.

 

IF I could do it over agian, there is NO question whatsoever, that I would make sure they were given IV antibiotics during or following surgery. I would also definitely put them on prophylactic antibiotics following surgery.

 

Colleen

[Robin]

Keep in mind...strep may be hiding in many other places in the body other than the tonsils.

 

Nancy

 

My daughter had her tonsils and adenoids removed when she was 6. She was on prophylactic antibiotics until 2 days before surgery. I don't remember if she was given antibiotics IV during surgery, but I know she was on NO antibiotics following surgery. She was symptom free for exactly 1 1/2 years, at which time she woke up one morning with PANDAS symptoms returned

 

My son had his tonsils and adenoids removed when he was 5. I don't remember if he had antibiotics during surgery, but he was not on them prophylactically before or after surgery. His PANDAS symptoms came back much sooner- maybe within 6 months. He did not begin prophylactic antibiotics until he was almost 8.

 

IF I could do it over agian, there is NO question whatsoever, that I would make sure they were given IV antibiotics during or following surgery. I would also definitely put them on prophylactic antibiotics following surgery.

 

Colleen