Newly Diagnosed

[mom23boyz]

My son has been diagnosed by his pediatrician with PANDAS. He has a history of strep throat/scarlet fever last winter. That required 3 courses of antibiotic to finally get a neg throat culture. My son continued to complain of sore throat and stomach ache for several weeks after. No one could give me any real answers. He did not have any PANDAS symptoms with that illness. Skip forward Jan. 1st 2010. Rang the new year in with explosive PANDAS symptoms. Although I did not no what they were at the time. Thought it was extreme anxiety over going back to school. For 2 weeks I went to his Dr. looking for answers. Finally he mentioned PANDAS did rapid strep test, but when that came back neg. he referred us to a "Psychologist". Went home and did some research on PANDAS. Went back to Dr. 1 week later on Jan. 21st insisting my son had PANDAS and could we draw titers and do 72 hour culture. He said lets treat it like strep and see what happens. Refused to order any blood work or 72 hour culture. My son was started on Omnicef for 10 days. He was 90 % back to himself after the antibiotic. Dr. would not give us any more antibiotics. We scheduled our son for a tonsillectomy Feb. 9. (We had looked into this last year due to his continued sore throat, but ENT then said 1 time of strep not enough to warrant surgery. We agreed. Until... PANDAS episode this year. So here we are 10 days post op with PANDAS symptoms ( started day 5 post op) at about 60 %. Does anyone know if the tonsillectomy could have triggered something or released strep somehow? or maybe the last infection was not taken care of with just 1 course of antibiotics? He was only on Amoxicillin ( low dose) preventively post surgery for 10 days. My son also developed an upper resp. infection and temp of 102 on day 5 when his PANDAS symptoms started. Could this have triggered it? I am so sad. I thought we had this thing gone. We probably rushed into surgery to quickly, but we were scared!! We took our son back to the pediatrician on Tuesday he put him on Zithromax,(also he did a 72 hour culture, that came back neg) but I did not see any improvement like when he was on Omincef, so yesterday I called his Dr. for Omnicef, because we saw immediate results with that last time. At this time our Dr. states " What exactly are we treating here? Strep was neg? I stated " I don't know, but all I know is that he was neg last time too and responded to the antibiotics. Can we please just try the Omnicef again?" I was desperate, I dread it getting full blown again. Today he seems a little better. Just wondering if anyone has experienced this with tonsillectomy? Sorry for such I long post. I would love to here from all of you experienced PANDAS parents out there. Thank You Lisa

[Dr_Rosario_Trifiletti]

My son has been diagnosed by his pediatrician with PANDAS. He has a history of strep throat/scarlet fever last winter. That required 3 courses of antibiotic to finally get a neg throat culture. My son continued to complain of sore throat and stomach ache for several weeks after. No one could give me any real answers. He did not have any PANDAS symptoms with that illness. Skip forward Jan. 1st 2010. Rang the new year in with explosive PANDAS symptoms. Although I did not no what they were at the time. Thought it was extreme anxiety over going back to school. For 2 weeks I went to his Dr. looking for answers. Finally he mentioned PANDAS did rapid strep test, but when that came back neg. he referred us to a "Psychologist". Went home and did some research on PANDAS. Went back to Dr. 1 week later on Jan. 21st insisting my son had PANDAS and could we draw titers and do 72 hour culture. He said lets treat it like strep and see what happens. Refused to order any blood work or 72 hour culture. My son was started on Omnicef for 10 days. He was 90 % back to himself after the antibiotic. Dr. would not give us any more antibiotics. We scheduled our son for a tonsillectomy Feb. 9. (We had looked into this last year due to his continued sore throat, but ENT then said 1 time of strep not enough to warrant surgery. We agreed. Until... PANDAS episode this year. So here we are 10 days post op with PANDAS symptoms ( started day 5 post op) at about 60 %. Does anyone know if the tonsillectomy could have triggered something or released strep somehow? or maybe the last infection was not taken care of with just 1 course of antibiotics? He was only on Amoxicillin ( low dose) preventively post surgery for 10 days. My son also developed an upper resp. infection and temp of 102 on day 5 when his PANDAS symptoms started. Could this have triggered it? I am so sad. I thought we had this thing gone. We probably rushed into surgery to quickly, but we were scared!! We took our son back to the pediatrician on Tuesday he put him on Zithromax,(also he did a 72 hour culture, that came back neg) but I did not see any improvement like when he was on Omincef, so yesterday I called his Dr. for Omnicef, because we saw immediate results with that last time. At this time our Dr. states " What exactly are we treating here? Strep was neg? I stated " I don't know, but all I know is that he was neg last time too and responded to the antibiotics. Can we please just try the Omnicef again?" I was desperate, I dread it getting full blown again. Today he seems a little better. Just wondering if anyone has experienced this with tonsillectomy? Sorry for such I long post. I would love to here from all of you experienced PANDAS parents out there. Thank You Lisa

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

[dcmom]

Lisa- I am so sorry that you are here- but welcome.

 

My dd had a similar story. She had acute, overnight pandas onset along with positive strep culture. Antibiotics took care of that episode.

 

We then had her tonsils out, and 7 days later, she woke up with major pandas symptoms again. I don't know why it happened- maybe there was some strep in the tonsil area that was released into the bloodstream- who knows?

 

You need to try to get your son on full strength antibiotics for a month, to start. If you do not see a quick remission, I would recommend a steroid burst.

 

I strongly recommend getting to an experienced pandas doc- unfortunately this goes beyond what many pediatricians can/will do. Where do you live?

[mom23boyz]

Lisa- I am so sorry that you are here- but welcome.

 

My dd had a similar story. She had acute, overnight pandas onset along with positive strep culture. Antibiotics took care of that episode.

 

We then had her tonsils out, and 7 days later, she woke up with major pandas symptoms again. I don't know why it happened- maybe there was some strep in the tonsil area that was released into the bloodstream- who knows?

 

You need to try to get your son on full strength antibiotics for a month, to start. If you do not see a quick remission, I would recommend a steroid burst.

 

I strongly recommend getting to an experienced pandas doc- unfortunately this goes beyond what many pediatricians can/will do. Where do you live?

 

Thank you for the warm welcome. We live in Carson City, NV. The Dr.'s here know very little about Pandas. We are thinking about going to Stanford for more answers. I think I've convinced my son's Pediatrician to continue for one month of Omnicef. Has your dd had more pandas episodes since the post tonsillectomy episode? Does she seem to get strep less often now?

[colleenrn]

Lisa,

 

My daughter was on Clindamycin for about 3 weeks prior to her T&A. She was strep free and PANDAS symptom free for 1 1/2 years. (Amoxicillin and Augmentin did nothing for her)

 

My son was not on antibiotics prior to his T&A and his PANDAS symptoms returned much sooner (maybe 3 months?).

 

My third son may need a T&A and I am going to make sure he is on antibiotics prior to surgery.

 

If your son's strep was not fully erradiated it may be that when they removed his tonsils and adenoids, a little strep was still there and recolonized. The tonsils are tissue and sometimes htey are not 100% removed.

 

OR the remaining strep was just released into his bloodstream and that is why you are seeing an exacerbation.

 

I completely agree with Dr. T that children should be on antibiotics prior to surgey. I also do not think it is overkill to give a bag of antibiotics during or post surgery and oral antibiotics for a few weeks following surgery.

 

What dose of Omnicef is he curently on and what is his weight?

 

Hang in there! It will get better!

 

Colleen

[mom23boyz]

My son has been diagnosed by his pediatrician with PANDAS. He has a history of strep throat/scarlet fever last winter. That required 3 courses of antibiotic to finally get a neg throat culture. My son continued to complain of sore throat and stomach ache for several weeks after. No one could give me any real answers. He did not have any PANDAS symptoms with that illness. Skip forward Jan. 1st 2010. Rang the new year in with explosive PANDAS symptoms. Although I did not no what they were at the time. Thought it was extreme anxiety over going back to school. For 2 weeks I went to his Dr. looking for answers. Finally he mentioned PANDAS did rapid strep test, but when that came back neg. he referred us to a "Psychologist". Went home and did some research on PANDAS. Went back to Dr. 1 week later on Jan. 21st insisting my son had PANDAS and could we draw titers and do 72 hour culture. He said lets treat it like strep and see what happens. Refused to order any blood work or 72 hour culture. My son was started on Omnicef for 10 days. He was 90 % back to himself after the antibiotic. Dr. would not give us any more antibiotics. We scheduled our son for a tonsillectomy Feb. 9. (We had looked into this last year due to his continued sore throat, but ENT then said 1 time of strep not enough to warrant surgery. We agreed. Until... PANDAS episode this year. So here we are 10 days post op with PANDAS symptoms ( started day 5 post op) at about 60 %. Does anyone know if the tonsillectomy could have triggered something or released strep somehow? or maybe the last infection was not taken care of with just 1 course of antibiotics? He was only on Amoxicillin ( low dose) preventively post surgery for 10 days. My son also developed an upper resp. infection and temp of 102 on day 5 when his PANDAS symptoms started. Could this have triggered it? I am so sad. I thought we had this thing gone. We probably rushed into surgery to quickly, but we were scared!! We took our son back to the pediatrician on Tuesday he put him on Zithromax,(also he did a 72 hour culture, that came back neg) but I did not see any improvement like when he was on Omincef, so yesterday I called his Dr. for Omnicef, because we saw immediate results with that last time. At this time our Dr. states " What exactly are we treating here? Strep was neg? I stated " I don't know, but all I know is that he was neg last time too and responded to the antibiotics. Can we please just try the Omnicef again?" I was desperate, I dread it getting full blown again. Today he seems a little better. Just wondering if anyone has experienced this with tonsillectomy? Sorry for such I long post. I would love to here from all of you experienced PANDAS parents out there. Thank You Lisa

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

Dr. T

Wish I had joined this forum earlier!! Hind sight is always 20/20. I tried to talk the ENT into giving us a different antibiotic post op, but he assured us the amoxicillin was enough because there was no active infection anymore...

 

I think that submitting an article to an ENT journal would save many families from the heart ache we have experienced

[peglem]

My daughter saw the worst PANDAS episode she's ever had following her T & A, and she's had lots of episodes over the years. We thought it would get rid of her chronic strep so we only did one course of amoxicillan afterward.

[mom23boyz]

Lisa,

 

My daughter was on Clindamycin for about 3 weeks prior to her T&A. She was strep free and PANDAS symptom free for 1 1/2 years. (Amoxicillin and Augmentin did nothing for her)

 

My son was not on antibiotics prior to his T&A and his PANDAS symptoms returned much sooner (maybe 3 months?).

 

My third son may need a T&A and I am going to make sure he is on antibiotics prior to surgery.

 

If your son's strep was not fully erradiated it may be that when they removed his tonsils and adenoids, a little strep was still there and recolonized. The tonsils are tissue and sometimes htey are not 100% removed.

 

OR the remaining strep was just released into his bloodstream and that is why you are seeing an exacerbation.

 

I completely agree with Dr. T that children should be on antibiotics prior to surgey. I also do not think it is overkill to give a bag of antibiotics during or post surgery and oral antibiotics for a few weeks following surgery.

 

What dose of Omnicef is he curently on and what is his weight?

 

Hang in there! It will get better!

 

Colleen

Thank you Colleen. My son is on 375mg once daily. His weight is 52 lbs. He is 6 years old.

[mom23boyz]

My daughter saw the worst PANDAS episode she's ever had following her T & A, and she's had lots of episodes over the years. We thought it would get rid of her chronic strep so we only did one course of amoxicillan afterward.

So sorry. Did you end up doing another course of a different antibiotic to help with that episode?

[colleenrn]

That seems to be the right dose for his weight (14mg/kg/day). With my daughter, her symptoms returned after 1 1/2 years. I am pretty sure we used Augmentin at the time. In hind sight, I would have used a cephalosporin (like omnicef) or Zithromax.

Colleen

[nomoz]

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

[EAMom]

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

[EAMom]

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.

[thereishope]

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.

[ajcire]

Dr. T, can I copy your post and share it with my ENT? I have my dd scheduled next month... she is not definitely pandas.. my son is... but I suspect she is too due to chronic tummyaches/mood liability issues some wonky tantrums out of nowhere..no tics, no clear ocd though and just that look in her eyes during those times. That said, is there any harm in the antibiotics for the 10 days if for any reason I am wrong and she doesn't have pandas? I guess I am nervous about medicating if she doesn't need it but terrified of not medicating if she does. My ENT had not heard of pandas but was open to my conversation about it and was also willing to take my son's tonsils out based on these concerns despite him being short on the criteria on the amount of times of strep (of course he has had it less than my daughter as he's been on antibiotics a lot which likely warded it off.. he's had it plenty though)... he said he was willing to treat her pre-op with antibiotics as well but not sure if he will let me decide which antibiotic he should treat with... but he just might with a suggestion in writing. I just want to make sure it won't be harmful but might be helpful. I might actually be able to convince one of my peds to treat with the antibiotic of my choice if he could see a legit source suggesting it.