Newly Diagnosed

[EAMom]

ajcire--Be sure to ask for a pill version of Clindamycin b/c the liquid is really NASTY tasting!

[ajcire]

ajcire--Be sure to ask for a pill version of Clindamycin b/c the liquid is really NASTY tasting!

 

 

Ack EAMOM.... I'm the one who posted asking how the heck to get my kid to take a pill.... my dd though is not the one I have been trying to and when she watched her brother refused it was enough to make her announce that she would do it if it was her.. so she would likely try just to spite her brother... but if we go ahead and get my son's tonsils out in the summer as we are considering... that will be a problem because he just 100% would rather a nasty liquid

[mom23boyz]

Hi Lisa,

 

several things:

 

1) I would strongly recommend throat culturing other family members to check for carriers. Our younger dd is an assymptomatic strep carrier and our PANDAS dd will react when she was positive (even when PANDAS dd was on abs).

 

2) btw...Here's another recent thread with the same problem (exacerbation post tonsilectomy) http://www.latitudes.org/forums/index.php?...art=#entry48432

 

3) There are several of us on this forum that live in Northern Ca, near Stanford. The docs at Stanford aren't super PANDAS knowledgeable. Dh and I were lucky enough to be able to convince our immunologist there to go through with IVIG, and he might be worthwhile seeing if you haven't already had a good immune workup. (It's not that easy to get IVIG at Stanford...a few others in this area have wound up flying to Dr. K. in Chicago for tx instead.) Anyway, if you are thinking of coming to Stanford I can give you more info. There is also a good private practice child psychiatrist here.

 

4) Here is a thread that might be helpful, FAQ:

http://www.latitudes.org/forums/index.php?showtopic=6266

We did have all household member screened. Everyone came back neg. Thank you for the previous link on the subject, very informative! Sad that Stanford does not have any good PANDAS Dr. We have a phone conference set up with Dr. K. on Tuesday of this week. I am anxious for that. I have so many questions????

[mom23boyz]

Welcome.

 

I once did a poll about this. http://www.latitudes.org/forums/index.php?...ic=5488&hl=

 

My son had a + strep test one month after t and a. Very sad since he was in complete remission at teh time of surgery and we then went on to experience a 5 month recovery from PANDAS. I admit, the odds were against him for catching it. At that time, all 3 of my kids had strep. And from what I understand last year was a very bad year for strep in my area.It was the first the other non-PANDAS kids tested +. It was also at that time I realized all 3 of my kids (not just the PANDAS one) do not get symptoms of strep. My 2 other kids skipped and giggled all the way to the dr for their swab. Hence why it is important to rule out all family members every time someone has an infection.

 

Now for some hope. I know some PANDAS kids go to have chronic strep even after surgery, but my son's last strep infection was the one after surgery. He has been strep free since March 2009. So even though I know he can always contract it again, I willl never know how many times the surgery prevented an infection.

Vickie,

Thanks for the poll link. That was interesting. So sorry your sons PANDAS was exacerbated for 5 months. That must have been very difficult. Lisa

[mom23boyz]

Welcome.

 

I once did a poll about this. http://www.latitudes.org/forums/index.php?...ic=5488&hl=

 

My son had a + strep test one month after t and a. Very sad since he was in complete remission at teh time of surgery and we then went on to experience a 5 month recovery from PANDAS. I admit, the odds were against him for catching it. At that time, all 3 of my kids had strep. And from what I understand last year was a very bad year for strep in my area.It was the first the other non-PANDAS kids tested +. It was also at that time I realized all 3 of my kids (not just the PANDAS one) do not get symptoms of strep. My 2 other kids skipped and giggled all the way to the dr for their swab. Hence why it is important to rule out all family members every time someone has an infection.

 

Now for some hope. I know some PANDAS kids go to have chronic strep even after surgery, but my son's last strep infection was the one after surgery. He has been strep free since March 2009. So even though I know he can always contract it again, I willl never know how many times the surgery prevented an infection.

Vickie,

Thanks for the poll link. That was interesting. So sorry your sons PANDAS was exacerbated for 5 months. That must have been very difficult. Lisa

[thereishope]

Well, Lisa, that 5 months was hard, but when I look at some of the struggles others on here have, I do realize how lucky we were/are. I have him back now. That's what important:)

[Dr_Rosario_Trifiletti]

I've heard reports of this in a number of my patients. I make it a point to prescribe a full 10 days of clindamycin to sterile the tonsils prior to tonsillectomy. Other antibiotics could be used, but those that treat a strep carrier state must be used. Amoxicillin was not sufficient. I always explain to patients that the tonsils are lymphatic tissue and are a little like filters on air purifiers. Have you ever changed a dirty one - the room is full of dust. In the same way, a surgeon manipulating infected tonsils is sure to seed the blood with strep and in the PANDAS patient this can be disastrous.

 

I'm thinking of submitting a little article to an ENT journal on this to try to try to encourage a practice of pre-op tonsillar sterilization in PANDAS patients ....

 

Dr. Trifiletti

 

I love the air filter analogy!

 

I'm curious, does anyone ever culture tonsils after they've been removed? It seems that everyone assumes there is no infection (hence no abs, or low dose amoxcillin) pre and post surgery. It seems that the excised tonsils could give you a better culture/indication as to whether the infeciton is really gone, better than the typical swab at least.

I just saw a patient a few hours ago who had a tonsillectomy for PANDAS on 2/12. The child was on appropriate antibiotics pre-operatively. Both tonsils were cultured and from both: Haemophilus Influenzae ! I can't tell from the prelim path report if it is Type B (the kind that causes meningitis and why your child gets HIBVAX) or so called non-typable H.Flu. So I treated for the worst possible scenario as a precaution (Augmentin and Rifampin). Could H.Flu be another on our list of PANDAS-like illness culprits? Or does this simply tell us that the tonsillectomy is unlikely to affect PANDAS symptoms (there's been no appreciable benefit thus far).

 

Has anyone else's child had cultures of removed tonsils?

 

I'm beginning to think that we should request ENT physicians request cultures on their tonsils. This is almost never done in routine practice. Another reason for that paper ...

 

Dr. T

[mom23boyz]

Well, Lisa, that 5 months was hard, but when I look at some of the struggles others on here have, I do realize how lucky we were/are. I have him back now. That's what important:)

Vickie,

If you don't mind me asking or you having to repeat yourself for the 15 millionth time. What ended up working for you to get your son back?

[mom23boyz]

So sorry your family is going though this. My daughter had her tonsils out about a year ago, and for three months before, was really really PANDAS symptomatic. Even on an antibiotic, a few weeks before she had to go in for surgery, she had to go on stronger ones, because her strep infection was still present.

Post tonsillectomy, she was great for about one month to one 1/2 months. By great, I mean, quiet, calm, not screaming, or anxious. She still looked pretty sick - it took her a very long time to heal. And by March into April, I didn't think I was going to make it through the school year.

Wonder if you are right about that.. maybe the strep just festers and goes elsewhere. I didn't have strong antibx afterword, as local peds are hesitant to treat PANDAS.

Hoping your instincts are correct, and praying for you!

Noelle

Nolle,

I am in a similar situation, doctors here in Nevada know very little and are hesitant to treat. I had to really force the issue and get a better antibiotic when we treated him the first time. This illness so complicated! My son is 2 weeks out and he still looks so pale and sickly. I have no idea how I will or when I will send him back to school. The other factor, he has bad separation anxiety now. What to do??

[mom23boyz]

I've heard reports of this in a number of my patients. I make it a point to prescribe a full 10 days of clindamycin to sterile the tonsils prior to tonsillectomy. Other antibiotics could be used, but those that treat a strep carrier state must be used. Amoxicillin was not sufficient. I always explain to patients that the tonsils are lymphatic tissue and are a little like filters on air purifiers. Have you ever changed a dirty one - the room is full of dust. In the same way, a surgeon manipulating infected tonsils is sure to seed the blood with strep and in the PANDAS patient this can be disastrous.

 

I'm thinking of submitting a little article to an ENT journal on this to try to try to encourage a practice of pre-op tonsillar sterilization in PANDAS patients ....

 

Dr. Trifiletti

 

I love the air filter analogy!

 

I'm curious, does anyone ever culture tonsils after they've been removed? It seems that everyone assumes there is no infection (hence no abs, or low dose amoxcillin) pre and post surgery. It seems that the excised tonsils could give you a better culture/indication as to whether the infeciton is really gone, better than the typical swab at least.

I just saw a patient a few hours ago who had a tonsillectomy for PANDAS on 2/12. The child was on appropriate antibiotics pre-operatively. Both tonsils were cultured and from both: Haemophilus Influenzae ! I can't tell from the prelim path report if it is Type B (the kind that causes meningitis and why your child gets HIBVAX) or so called non-typable H.Flu. So I treated for the worst possible scenario as a precaution (Augmentin and Rifampin). Could H.Flu be another on our list of PANDAS-like illness culprits? Or does this simply tell us that the tonsillectomy is unlikely to affect PANDAS symptoms (there's been no appreciable benefit thus far).

 

Has anyone else's child had cultures of removed tonsils?

 

I'm beginning to think that we should request ENT physicians request cultures on their tonsils. This is almost never done in routine practice. Another reason for that paper ...

 

Dr. T

This is very interesting. My pedi asked if we had his tonsils cultured. I didn't even know it was an option do they keep them around for a while. His surgery was on 2/9 Could they culture them now if the still had them??? He never tested positive on a throat culture for strep. So this would help us figure out his trigger? Also, Colleen mentioned his strep could be elsewhere. He always gets stomach aches with his pandas symptoms. Maybe we should culture the stool??

[EAMom]

This is very interesting. My pedi asked if we had his tonsils cultured. I didn't even know it was an option do they keep them around for a while. His surgery was on 2/9 Could they culture them now if the still had them??? He never tested positive on a throat culture for strep. So this would help us figure out his trigger? Also, Colleen mentioned his strep could be elsewhere. He always gets stomach aches with his pandas symptoms. Maybe we should culture the stool??

 

I don't know if the culture would still be good, even if they still have the tonsils. I'm guessing it would be a likely false neg, but it would depend on how they "kept it." How long does strep live on a toothbrush? That might be a clue. Did they refrigerate the tonsils? Or course if they put in in formulin/formaldehyde (sp?)...then they woudln't be able to cutlure since I'm quite sure the formaldehyde would kill everything off.

 

Maybe your son also has strep of the gut...I don't know how to test for that but I know some on this forum have had that done.

[colleenrn]

I think, if I remember correctly, strep can live on an unrinsed toothbrush for up to 17 days, but less time on a rinsed toothbrush. I don't know if they can still culture them. Perhaps if they are keeping it in some type of preservative?? Not sure.

 

I am KICKING myself that we never cultured my son and daughter's tonsils or adenoids when they were removed.

 

Colleen