Strep without a PANDAS exacerbation?

[Athena]

I have just registered in this forum, but I have been reading it for what seems like a long time now. I have learned so much from everyone, and I've agonized over the stories of your children as I addressed the issues of my own. I joined the forum and am writing now because for the first time I have a question that I haven't seen addressed in the past year's threads: Although clearly PANDAS symptoms seem to surface for many reasons not associated with strep, has anyone's child "successfully" had strep without a PANDAS exacerbation?

 

Here is my son's story:

 

My DS7 was diagnosed with PANDAS in Dec. 09. He had repeated strep infections the prior school year (Oct. 08, Feb. 09, Mar 09, April 09, May 09), and these were always treated with 5 days of azyth. Then he presented with a strep-like rash on his face in mid-Oct 09, but this was treated only with an antibiotic creme. No strep test at that doc visit. The PANDAS symptoms began two weeks later in Nov 09. He developed tics, OCD, ADD, regressive behaviors, just about every symptom possible beginning in Nov. 09. In Dec. 09, his CBC and ASO blood test showed his ASO titer was almost 600 and that his neutrophils were low. He was put on azyth from Dec. 15 until Jan. 31 (except for one week during Christmas). In mid-Jan., we all caught strep in my household, and my DS7 had an asthma attack. He started an exacerbation, but 5 days of prednisone stopped it. Except for some ADD challenges, he has been symptom free since then (mid-January), and he has not been on abx since Jan. 31. A blood test in late January showed his ASO titer had declined to about 400 (still high, but moving in the right direction).

 

I believe he would fit the "hyper-immune," Type 1 (or is it Type A?...From Dr. T's classification idea) PANDAS. That is, his immune system mounted a response to strep, but did not "stand down" once the infection was under control. Both a leading psychologist and a pediatric neurologist in the Phila. area stated that "his diagnosis is consistent with PANDAS."

 

My son has several severe allergies (including peanuts, penciillin and cephalosporins) and asthma. Given such good remission of PANDAS symptoms, and also his abx allergies, his doctors and I agreed that prophylactic abx might not be such a good thing for us, as he is already so limited in what abx he can take.

 

He has followed a fairly strict "anti-inflammatory" and immune-building diet since January....No articial sweeteners, food colors, or additives, almost no fried food, etc. He takes zinc, magnesium, and Omega-3 supplements, + a multi-vitamin and lots of fruits and veggies. He also eats yogurt and takes a pro-biotic every day. I give him ibuprofen any time he seems irritable (up to 2x per day). He takes zyrtec now due to tree pollen allergies. My own research as well as insight derived from this forum (esp., thank you Buster and Vickie and all you advanced members!) made me try whatever made sense to keep his BBB closed and build up his immune system, esp. regulatory T-cells.

 

On April 1, he developed croup in the middle of the night. Negative strep test (rapid AND culture). His pediatrician gave him one steroid dose to open up his airway. On April 6, he came home from school with a high fever and a sore throat. On April 7, he tested postive for strep throat, and he has been on azyth again since then (400 mg per day for 14 days). So far, throughout the croup and the strep, he has had NO PANDAS symptoms.

 

I expected he would start ticcing or washing his hands or stop wearing socks or something at the onset of a new strep infection. I expected that an exacerbation would follow any strep infection. Now I don't know what to expect. It's been 2 weeks, and I keep waiting for something. Yet, my DS7 seems fine. I will wait until next week (several days after stopping the abx) to take him for a strep culture to make sure it's all gone.

 

The neurologist said that my DS7's illness may be "self-limiting," meaning he might not have an exacerbation again. Could this be true?

 

Has anyone's PANDAS child ever had a case of strep that was NOT accompanied by a PANDAS exacerbation? How long after a strep infection before PANDAS typically recurs?

[Buster]

Hi Athena,

 

Extremely hard to say what is going on. It's possible the steroid burst had an effect -- it sounds like it was a single dosage but was likely quite a high dosage. Perhaps that was enough to prevent opening of the BBB or that you caught the strep so quickly after the 6th. Very hard to say. In our case, exacerbations were quite consistent with GABHS infections.

 

Best regards,

 

Buster

 

 

 

I have just registered in this forum, but I have been reading it for what seems like a long time now. I have learned so much from everyone, and I've agonized over the stories of your children as I addressed the issues of my own. I joined the forum and am writing now because for the first time I have a question that I haven't seen addressed in the past year's threads: Although clearly PANDAS symptoms seem to surface for many reasons not associated with strep, has anyone's child "successfully" had strep without a PANDAS exacerbation?

 

Here is my son's story:

 

My DS7 was diagnosed with PANDAS in Dec. 09. He had repeated strep infections the prior school year (Oct. 08, Feb. 09, Mar 09, April 09, May 09), and these were always treated with 5 days of azyth. Then he presented with a strep-like rash on his face in mid-Oct 09, but this was treated only with an antibiotic creme. No strep test at that doc visit. The PANDAS symptoms began two weeks later in Nov 09. He developed tics, OCD, ADD, regressive behaviors, just about every symptom possible beginning in Nov. 09. In Dec. 09, his CBC and ASO blood test showed his ASO titer was almost 600 and that his neutrophils were low. He was put on azyth from Dec. 15 until Jan. 31 (except for one week during Christmas). In mid-Jan., we all caught strep in my household, and my DS7 had an asthma attack. He started an exacerbation, but 5 days of prednisone stopped it. Except for some ADD challenges, he has been symptom free since then (mid-January), and he has not been on abx since Jan. 31. A blood test in late January showed his ASO titer had declined to about 400 (still high, but moving in the right direction).

 

I believe he would fit the "hyper-immune," Type 1 (or is it Type A?...From Dr. T's classification idea) PANDAS. That is, his immune system mounted a response to strep, but did not "stand down" once the infection was under control. Both a leading psychologist and a pediatric neurologist in the Phila. area stated that "his diagnosis is consistent with PANDAS."

 

My son has several severe allergies (including peanuts, penciillin and cephalosporins) and asthma. Given such good remission of PANDAS symptoms, and also his abx allergies, his doctors and I agreed that prophylactic abx might not be such a good thing for us, as he is already so limited in what abx he can take.

 

He has followed a fairly strict "anti-inflammatory" and immune-building diet since January....No articial sweeteners, food colors, or additives, almost no fried food, etc. He takes zinc, magnesium, and Omega-3 supplements, + a multi-vitamin and lots of fruits and veggies. He also eats yogurt and takes a pro-biotic every day. I give him ibuprofen any time he seems irritable (up to 2x per day). He takes zyrtec now due to tree pollen allergies. My own research as well as insight derived from this forum (esp., thank you Buster and Vickie and all you advanced members!) made me try whatever made sense to keep his BBB closed and build up his immune system, esp. regulatory T-cells.

 

On April 1, he developed croup in the middle of the night. Negative strep test (rapid AND culture). His pediatrician gave him one steroid dose to open up his airway. On April 6, he came home from school with a high fever and a sore throat. On April 7, he tested postive for strep throat, and he has been on azyth again since then (400 mg per day for 14 days). So far, throughout the croup and the strep, he has had NO PANDAS symptoms.

 

I expected he would start ticcing or washing his hands or stop wearing socks or something at the onset of a new strep infection. I expected that an exacerbation would follow any strep infection. Now I don't know what to expect. It's been 2 weeks, and I keep waiting for something. Yet, my DS7 seems fine. I will wait until next week (several days after stopping the abx) to take him for a strep culture to make sure it's all gone.

 

The neurologist said that my DS7's illness may be "self-limiting," meaning he might not have an exacerbation again. Could this be true?

 

Has anyone's PANDAS child ever had a case of strep that was NOT accompanied by a PANDAS exacerbation? How long after a strep infection before PANDAS typically recurs?

[peglem]

Its also possible that he had post infectious encephalitis, instead of an autoimmune disorder.

[thereishope]

Welcome to posting. When he had previous strep infections (except for the rash), did he always get classic symptoms like a sore throat and fever like he did with this past one?

 

For my son, so far his PANDAS symptoms have been the signal that he has strep since he does not get a sore throat or fever. So, I suppose I don't really know how long he had strep for before PANDAS kicks in. Also, I suppose if my son continues to be asymptomatic with strep, he could in theory, have strep w/o PANDAS and I would never know.

 

I would bring all family members in for strep tests right now. Make sure no one will reinfect him. Let's hope all stay well in your home! Please keep us updated on this!

[Stephanie2]

I have heard that some strains of strep are more problematic than others (Buster could go into more detail on this if I am right). You bring up an interesting scenario, though. I really do believe that both of my neices (my brother's daughters, my brother had kawasaki as a child) had pandas at one point with unexplained sensory and separation anxiety, etc... Then when my neice got strep throat (they caught it very early) I was surprised that there were no pandas symptoms. Maybe they caught it early enough or maybe I was wrong that she ever had pandas. As for my kids, my 5 year old always seems to get pandas symptoms before the sore throat (couple days), and my 2 year old sometimes just gets pandas symptoms with no signs of illness.

 

Stephanie

Welcome to posting. When he had previous strep infections (except for the rash), did he always get classic symptoms like a sore throat and fever like he did with this past one?

 

For my son, so far his PANDAS symptoms have been the signal that he has strep since he does not get a sore throat or fever. So, I suppose I don't really know how long he had strep for before PANDAS kicks in. Also, I suppose if my son continues to be asymptomatic with strep, he could in theory, have strep w/o PANDAS and I would never know.

 

I would bring all family members in for strep tests right now. Make sure no one will reinfect him. Let's hope all stay well in your home! Please keep us updated on this!

[Athena]

Its also possible that he had post infectious encephalitis, instead of an autoimmune disorder.

 

Hmmmnn...We're pretty sure we were dealing with PANDAS. For example, he started with hand-washing and a severe facial tic. Another "classic" PANDAS symptom seemed to surface every day in November, so that by the beginning of Dec., my DS7 could not dress himself, brush his teeth, tolerate socks, long sleeves, or anything black. In a short period of time, his OCD symptoms were quite severe. His math scores in school went from 100% in Oct. to 79% at the end of Nov., and his handwriting deteriorated dramatically.

 

In Nov., I didn't know anything about PANDAS, and his pediatrician first suggested a psychiatrist. Although I studied all I could get my hands on about OCD at that time, I had great reservations about beginning with a psychiatrist and I asked what else could we do....So we got that blood test done. Even though his December strep culture was negative, my son's pediatician gave me 8 days of azyth when the ASO titer came back so high. After one day, my son started wearing socks again. By day 6, all tics and notable OCD symptoms were gone. I could not believe that an antibiotic could make all that madness go away. We took him to a well-regarded pediatric OCD psychologist just after starting the abx, and she said that abx doesn't make traditional OCD remit, and that we were dealing with PANDAS. He was off the azyth for a week over Christmas, but on New Year's Eve he started to tic and ramp up again. We immediately resumed the azyth, and again the symptoms disappeared...until we all got strep mid-Jan. Over about 5 days, he started ticcing and hand-washing and having intermittant rages. He was still on the azyth, but we added prednisone. On "day 6" (after 5 days of prednisone), he came downstairs mid-morning, fully dressed, and asked for breakfast. He told me he was done with the OCD and "all that stuff"...and that was the end of that.

 

Although I don't think he had post infectious encephalitis, I remember wondering if he was truly "autoimmune." I sent an email to Dr. Kovacevic in December to ask if anyone was ever "cured" by abx alone. He replied that this is possible, especially if the first episode is treated aggressively, but relatively rare. This response from Dr. K was the reason I requested that my son stay on azyth for at least a month. Although I realize the "A" stands for "autoimmune," maybe PANDAS doesn't start out as autoimmune, but the body learns to attack the basal ganglia only after repeated opportunities to do so.

[Athena]

I have heard that some strains of strep are more problematic than others (Buster could go into more detail on this if I am right). You bring up an interesting scenario, though. I really do believe that both of my neices (my brother's daughters, my brother had kawasaki as a child) had pandas at one point with unexplained sensory and separation anxiety, etc... Then when my neice got strep throat (they caught it very early) I was surprised that there were no pandas symptoms. Maybe they caught it early enough or maybe I was wrong that she ever had pandas. As for my kids, my 5 year old always seems to get pandas symptoms before the sore throat (couple days), and my 2 year old sometimes just gets pandas symptoms with no signs of illness.

 

Stephanie

Welcome to posting. When he had previous strep infections (except for the rash), did he always get classic symptoms like a sore throat and fever like he did with this past one?

 

For my son, so far his PANDAS symptoms have been the signal that he has strep since he does not get a sore throat or fever. So, I suppose I don't really know how long he had strep for before PANDAS kicks in. Also, I suppose if my son continues to be asymptomatic with strep, he could in theory, have strep w/o PANDAS and I would never know.

 

I would bring all family members in for strep tests right now. Make sure no one will reinfect him. Let's hope all stay well in your home! Please keep us updated on this!

 

Well, occasionally he had a sore throat and fever, but more often just a rash on his face or a headache/stomach pains. Last year, very often his 11 year old sister would get strep and he would test positive, too. This April was the first time in a long time that anyone actually had a high fever and a red, sore throat. I tested myself and my 11 year to make sure we didn't also have strep. Negative. We will likely all get tested again early next week, just to be sure we are all clear.

 

Maybe if a kid can get strep and not have PANDAS symptoms, then it was never really PANDAS in the first place. Maybe Nov., Dec., and Jan. were just a bad dream. I don't think so, though. I'm thinking either we kept the BBB closed just as he caught this case of strep and we treated the strep quickly, or possibly his immune system has recovered and relearned what to do with strep. Maybe both. ....Or maybe next week I'll have bad news about a new exacerbation!

[Athena]

Hi Athena,

 

Extremely hard to say what is going on. It's possible the steroid burst had an effect -- it sounds like it was a single dosage but was likely quite a high dosage. Perhaps that was enough to prevent opening of the BBB or that you caught the strep so quickly after the 6th. Very hard to say. In our case, exacerbations were quite consistent with GABHS infections.

 

Best regards,

 

Buster

 

That's what I was thinking...A lucky case of croup indeed! I have learned from your posts here and on the PANDAS network that controlling inflammation is a key to controlling PANDAS.

[thereishope]

I was asking about the strep symptoms to fish around if maybe it could be the strain. Now, I remember there being a poster TracyRee that asked this same question once. Her son tested + w/o PANDAS symptoms and she was asking when the PANDAS symptoms would surface. But I cannot remember if they ever surfaced or the timeline. I'll try to pull up her post.

 

My guess is his BBB is in good shape or it's the strain. Either way, great news!!!!!!!!!!!!!!!!!

 

 

 

Well, occasionally he had a sore throat and fever, but more often just a rash on his face or a headache/stomach pains. Last year, very often his 11 year old sister would get strep and he would test positive, too. This April was the first time in a long time that anyone actually had a high fever and a red, sore throat. I tested myself and my 11 year to make sure we didn't also have strep. Negative. We will likely all get tested again early next week, just to be sure we are all clear.

 

Maybe if a kid can get strep and not have PANDAS symptoms, then it was never really PANDAS in the first place. Maybe Nov., Dec., and Jan. were just a bad dream. I don't think so, though. I'm thinking either we kept the BBB closed just as he caught this case of strep and we treated the strep quickly, or possibly his immune system has recovered and relearned what to do with strep. Maybe both. ....Or maybe next week I'll have bad news about a new exacerbation!

Edited April 19, 2010 by Vickie

[thereishope]

Here's Tracy's thread...

http://www.latitudes.org/forums/index.php?...amp;hl=tracyree

[Athena]

Thank you for this thread link....I wonder if TracyRee's child ever did have another exacerbation. (...and I sure hope not!)

[tired mom]

I have just registered in this forum, but I have been reading it for what seems like a long time now. I have learned so much from everyone, and I've agonized over the stories of your children as I addressed the issues of my own. I joined the forum and am writing now because for the first time I have a question that I haven't seen addressed in the past year's threads: Although clearly PANDAS symptoms seem to surface for many reasons not associated with strep, has anyone's child "successfully" had strep without a PANDAS exacerbation?

 

Here is my son's story:

 

My DS7 was diagnosed with PANDAS in Dec. 09. He had repeated strep infections the prior school year (Oct. 08, Feb. 09, Mar 09, April 09, May 09), and these were always treated with 5 days of azyth. Then he presented with a strep-like rash on his face in mid-Oct 09, but this was treated only with an antibiotic creme. No strep test at that doc visit. The PANDAS symptoms began two weeks later in Nov 09. He developed tics, OCD, ADD, regressive behaviors, just about every symptom possible beginning in Nov. 09. In Dec. 09, his CBC and ASO blood test showed his ASO titer was almost 600 and that his neutrophils were low. He was put on azyth from Dec. 15 until Jan. 31 (except for one week during Christmas). In mid-Jan., we all caught strep in my household, and my DS7 had an asthma attack. He started an exacerbation, but 5 days of prednisone stopped it. Except for some ADD challenges, he has been symptom free since then (mid-January), and he has not been on abx since Jan. 31. A blood test in late January showed his ASO titer had declined to about 400 (still high, but moving in the right direction).

 

I believe he would fit the "hyper-immune," Type 1 (or is it Type A?...From Dr. T's classification idea) PANDAS. That is, his immune system mounted a response to strep, but did not "stand down" once the infection was under control. Both a leading psychologist and a pediatric neurologist in the Phila. area stated that "his diagnosis is consistent with PANDAS."

 

My son has several severe allergies (including peanuts, penciillin and cephalosporins) and asthma. Given such good remission of PANDAS symptoms, and also his abx allergies, his doctors and I agreed that prophylactic abx might not be such a good thing for us, as he is already so limited in what abx he can take.

 

He has followed a fairly strict "anti-inflammatory" and immune-building diet since January....No articial sweeteners, food colors, or additives, almost no fried food, etc. He takes zinc, magnesium, and Omega-3 supplements, + a multi-vitamin and lots of fruits and veggies. He also eats yogurt and takes a pro-biotic every day. I give him ibuprofen any time he seems irritable (up to 2x per day). He takes zyrtec now due to tree pollen allergies. My own research as well as insight derived from this forum (esp., thank you Buster and Vickie and all you advanced members!) made me try whatever made sense to keep his BBB closed and build up his immune system, esp. regulatory T-cells.

 

On April 1, he developed croup in the middle of the night. Negative strep test (rapid AND culture). His pediatrician gave him one steroid dose to open up his airway. On April 6, he came home from school with a high fever and a sore throat. On April 7, he tested postive for strep throat, and he has been on azyth again since then (400 mg per day for 14 days). So far, throughout the croup and the strep, he has had NO PANDAS symptoms.

 

I expected he would start ticcing or washing his hands or stop wearing socks or something at the onset of a new strep infection. I expected that an exacerbation would follow any strep infection. Now I don't know what to expect. It's been 2 weeks, and I keep waiting for something. Yet, my DS7 seems fine. I will wait until next week (several days after stopping the abx) to take him for a strep culture to make sure it's all gone.

 

The neurologist said that my DS7's illness may be "self-limiting," meaning he might not have an exacerbation again. Could this be true?

 

Has anyone's PANDAS child ever had a case of strep that was NOT accompanied by a PANDAS exacerbation? How long after a strep infection before PANDAS typically recurs?

I can relate some information that I was given and I hope this is not the case for you. My dd first exacerbation came and went at 10 years old. When it came back at 12 (I can recall the day) I realized she had been sick 6 weeks prior with a bad throat infection(no swab)that required steriods for swollen lymph nodes. I was told just recently by a Dr. that the symptoms would have presented themselves much quicker but because of the steroids at the time it held it at bay for 6 weeks. Keep a close watch. Back then I was unaware of Pandas and just followed the regular course of antibiotics.

Edited April 19, 2010 by tired mom

[thereishope]

You can do 2 things. Pull up her topics by clicking on her name in the thread or you can send her a message asking and a notification of that will be sent to her email.

 

 

Thank you for this thread link....I wonder if TracyRee's child ever did have another exacerbation. (...and I sure hope not!)

[memom]

[i suspect the steroids headed it off with closing the BBB. Just my theory given my dd17 history. I think why my dd17 had such a different case of onset was because she also has asthma and has had steroid bursts throughout her life for the asthma. It had been years since she had one, then a series of strep again with explosion of symptoms at 15yo. I suspect she has been pandas for many year previously but steroid inhalers, steroid bursts occassionally and antibiotics when respiratory viruses showed up.

 

Ellie