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4 weeks post T & A surgery


jjk4

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Hi All

I am still getting the hang of posting on this board so I decided to start as a new topic to share some things we learned after having my daughters tonsils removed 4 weeks ago.

My daughter (9) was dx's with PANDAS in the fall 2009 but has cycled thru various bouts of seperation anxiety, compulsive behaviors, and moods since age 5...never any tics. We did not think to relate flare ups in behavior with recent illness until the most, severe recent episode. She has had frequent ear infections, sore throats and colds during those years. She has food and environmental allergies but is not consistently on meds for it. Her tonsils had reamained large since about age 7 and, per orthodontic films, her adenoids were also large. While her ASO titer was 219 she has never had a positive strep throat culture (perhaps the strep was hiding behind her large tonsils...I don't know). We decided to do T & A surgery 4 weeks ago. It was medically indicated due to the size but we hoped it might help her body toward healing from a PANDAS perspective too.

I prepared for the worst (planned for help for me, shopped for favorite liquids and soft foods) but am happy to report it was not as bad as I thought it would be. She was "cranky" coming out of surgery and did have some difficult days around day 5-7 . Perhaps her self-imposed, rigid compliance with the doctors orders to keep up with liquids and tylenol as needed helped all of us get thru those first post op days. Anyway, since then, her mood, behavior and compulsions seem to be slowly improving. She is back at school and her teacher reports she seems to be generally doing well. She does still have anxiety and some compulsions that haven't budged (hence my last post)...but I think she is making some progress toward healing.

We did have to REALLY advocate for the following:

1-Full dose Augmentin pre, INTRA, and post operatively. This was not my ENT's normal protocol but he did agree to do it given her history.

2- Culture and Sensitivity testing of the tonsil tissue. Again, not protocol for our ENT. Usually, just pathology looks at the tissue structure. The ENT told us the tonsils looked like large rotten apples (gross)....pathology report used the medical term "hypertrophic". I did have to push to get the cultures done and it came back "Rare Gram Positive Cocci" but unfortunalty the specimin was disgarded before they did further serotyping on the tissue. We did learn the bacteria was resistent to ampicillin, beta lactamase positive, and sensitive to the other abx. The higher dose Augmentin seems to helping her for now so we will continue this for at least a month. We are to meet with Dr B in a few weeks to determine what steps to take next.

I hope our "relatively" smooth T & A surgery experience may help those of you considering doing it in the future.

Joanne

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thanks Joanne,

we are scheduled for T&A next week, basically for the same reasons as you, my son has the large tonsils with breathing apnea. we don't seem to get positive strep cultures either. we do have tics tho.

 

may I ask if your child is light in weight? we are kind of hoping getting rid of the largish tonsils may help him eat, sleep and thrive better, he is underweight for his age.

 

thanks

Faith

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Thank you so much for sharing this! We are planning to have T&A on our PANDAS son (11), but have to meet with ENT again on March 10 first before getting a surgery date. The reason for the surgery is that they found a cyst on his adenoids. Our ped is wondering if the cyst is harboring strep that antibiotics can't get to. Glad to hear things are going well and very anxious for our turn.

 

Faith, I think I already mentioned this in a previous post, but our son is very light in weight, too - just reached 60 pounds and is 11 1/2 yrs. He is on the short side for his age and just skin and bones. I hope things go well!

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thanks Joanne,

we are scheduled for T&A next week, basically for the same reasons as you, my son has the large tonsils with breathing apnea. we don't seem to get positive strep cultures either. we do have tics tho.

 

may I ask if your child is light in weight? we are kind of hoping getting rid of the largish tonsils may help him eat, sleep and thrive better, he is underweight for his age.

 

thanks

Faith

 

 

My daughter is 64 pounds but 4'11. She has a tall, thin frame for age but between 25-50% for age in wieght. She is still picky about what she eats but is definitly sleeping better now. I would definitly push for intra operative abx and see if they will do culture and sensitivity on the tonsil tissue. Also, prepare for lots of liquids...the more they drink the better. Good luck.

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I'm pretty sure he'll do intra abx during, but he has not mentioned anything about abx pre. do you think that's important? my son does not seem to get strep throat. is that something you asked for, or it is protocol? I should go ask about that. Is your child a definite PANDAS, or are you more speculating?

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Faith, I think you should do the pre-antibiotics if you can. I don't think it will hurt and you don't want to look back later on and wonder if you should have. My ENT said it was not normal protocol but he was willing to based on the information I gave him regarding pandas and when I told him that the dr. we saw for the pandas recommended it.

 

 

 

I'm pretty sure he'll do intra abx during, but he has not mentioned anything about abx pre. do you think that's important? my son does not seem to get strep throat. is that something you asked for, or it is protocol? I should go ask about that. Is your child a definite PANDAS, or are you more speculating?
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Dr T wants my son on 7 days minimum.

 

 

I just called the ENT office and the gal there says he doesn't prescribe abx before surgery. remember tho, we're not doing this as a PANDAS patient. We did discuss PANDAS however, I think I'm going to e-mail him and make sure for my son's case. thanks.

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Same here. We are 8 weeks post T&A. My son is 15. It did hurt but we kept up with the Tylenol with Codeine every 4 hours and started to see big results around 13 days post surgery. He went back to school 4 weeks ago and is doing really good. He was incapacitated with PANDAS prior to surgery. I should have had his tonsils cultured but didn't think of it at the time with everything going on. His ENT did say they were "gritty" with white puss and he would not have been surprised if there was strep in there.

 

Hi All

I am still getting the hang of posting on this board so I decided to start as a new topic to share some things we learned after having my daughters tonsils removed 4 weeks ago.

My daughter (9) was dx's with PANDAS in the fall 2009 but has cycled thru various bouts of seperation anxiety, compulsive behaviors, and moods since age 5...never any tics. We did not think to relate flare ups in behavior with recent illness until the most, severe recent episode. She has had frequent ear infections, sore throats and colds during those years. She has food and environmental allergies but is not consistently on meds for it. Her tonsils had reamained large since about age 7 and, per orthodontic films, her adenoids were also large. While her ASO titer was 219 she has never had a positive strep throat culture (perhaps the strep was hiding behind her large tonsils...I don't know). We decided to do T & A surgery 4 weeks ago. It was medically indicated due to the size but we hoped it might help her body toward healing from a PANDAS perspective too.

I prepared for the worst (planned for help for me, shopped for favorite liquids and soft foods) but am happy to report it was not as bad as I thought it would be. She was "cranky" coming out of surgery and did have some difficult days around day 5-7 . Perhaps her self-imposed, rigid compliance with the doctors orders to keep up with liquids and tylenol as needed helped all of us get thru those first post op days. Anyway, since then, her mood, behavior and compulsions seem to be slowly improving. She is back at school and her teacher reports she seems to be generally doing well. She does still have anxiety and some compulsions that haven't budged (hence my last post)...but I think she is making some progress toward healing.

We did have to REALLY advocate for the following:

1-Full dose Augmentin pre, INTRA, and post operatively. This was not my ENT's normal protocol but he did agree to do it given her history.

2- Culture and Sensitivity testing of the tonsil tissue. Again, not protocol for our ENT. Usually, just pathology looks at the tissue structure. The ENT told us the tonsils looked like large rotten apples (gross)....pathology report used the medical term "hypertrophic". I did have to push to get the cultures done and it came back "Rare Gram Positive Cocci" but unfortunalty the specimin was disgarded before they did further serotyping on the tissue. We did learn the bacteria was resistent to ampicillin, beta lactamase positive, and sensitive to the other abx. The higher dose Augmentin seems to helping her for now so we will continue this for at least a month. We are to meet with Dr B in a few weeks to determine what steps to take next.

I hope our "relatively" smooth T & A surgery experience may help those of you considering doing it in the future.

Joanne

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For some ENT's it is standard to do pre-surgery abx for something like 3-5 days prior. They want to try to rid any infection that may be hiding before they do surgery. Also, for some ENT's it is standard to do abx a few days post surgery to make sure no infection sets in where the surgery was. Now, the type of antibiotic may not be what you want. For my ENT, it was amoxicillan. I got the script for pre-surgery abx the day I was at the ENT making the appt for surgery. I was told to hold onto it and when to fill it. I would call and discuss it with him.

 

 

 

 

I'm pretty sure he'll do intra abx during, but he has not mentioned anything about abx pre. do you think that's important? my son does not seem to get strep throat. is that something you asked for, or it is protocol? I should go ask about that. Is your child a definite PANDAS, or are you more speculating?
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Faith, I think you should do the pre-antibiotics if you can. I don't think it will hurt and you don't want to look back later on and wonder if you should have. My ENT said it was not normal protocol but he was willing to based on the information I gave him regarding pandas and when I told him that the dr. we saw for the pandas recommended it.

 

 

 

I'm pretty sure he'll do intra abx during, but he has not mentioned anything about abx pre. do you think that's important? my son does not seem to get strep throat. is that something you asked for, or it is protocol? I should go ask about that. Is your child a definite PANDAS, or are you more speculating?

 

Faith,

According to the 3 PANDAS docs we have consulted with, our child psychiatrist, and our pedi...for our daughter, the dx of PANDAS is unfortunately more than speculation. We wrestled with the decision to do the surgery for fear of another large exaccerbation post op. Augmentin helped her so much in the past that it just made sense to me to advocate for the pre, intra and post abx.

The way it worked out for us, our pedi gave us the 10 day pre op abx, ENT did the intra op and a 7 day course post op, and then we filled a 30 day script thru our PANDAS doctor. While the ENT listened to our concerns as it related to PANDAS, he was clear that it was not his specialty and he would not perscribe any more abx than the 7 day post op script.

Hope that is more clear and helpful. IMO, it is important to follow your gut feeling...if your son does well on abx, then go for it and keep asking for what you think will benefit his healing process.

Joanne

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