When your child has active strep question..

[ajcire]

When your child has active strep when do you find you see the biggest affects of the pandas? During or after the infection?

 

My dr. ruled out strep based on titers which I have since learned here means nothing. That said a few days ago I noticed ds's throat clearing had come back and he had an unusual tantrum. I actually had thought that if I didn't know better I would think someone had strep in my house.. sure enough, yesterday I found out my dd has strep and the dr. (not the one I am seeing about pandas but my regular ped) took pity on me crying at this finding and told me to bring ds in to culture him. I know he did not expect it to be positive but it the quick strep test came back positive for ds too. So far really it's just the throat clearing and his almost now typical mood that he has... Our bedtime routine of him saying he's afraid to be alone.. it has not been any worse, just me having to promise to check on him and to hold a sign reminding me to check on him... he added one thing to that saying I need to keep him safe. But overall I keep waiting and wondering if maybe I am freaking for nothing.. is this all it will be or am I going to be in for a big surprise soon. I just keep thinking that I can deal with his moodiness and throat clearing and some eye blinking and checking on him till he falls asleep if this is it.

[amy s]

When your child has active strep when do you find you see the biggest affects of the pandas? During or after the infection?

 

My dr. ruled out strep based on titers which I have since learned here means nothing. That said a few days ago I noticed ds's throat clearing had come back and he had an unusual tantrum. I actually had thought that if I didn't know better I would think someone had strep in my house.. sure enough, yesterday I found out my dd has strep and the dr. (not the one I am seeing about pandas but my regular ped) took pity on me crying at this finding and told me to bring ds in to culture him. I know he did not expect it to be positive but it the quick strep test came back positive for ds too. So far really it's just the throat clearing and his almost now typical mood that he has... Our bedtime routine of him saying he's afraid to be alone.. it has not been any worse, just me having to promise to check on him and to hold a sign reminding me to check on him... he added one thing to that saying I need to keep him safe. But overall I keep waiting and wondering if maybe I am freaking for nothing.. is this all it will be or am I going to be in for a big surprise soon. I just keep thinking that I can deal with his moodiness and throat clearing and some eye blinking and checking on him till he falls asleep if this is it.

 

 

I can't remember... is your child is on any antibiotics?

[peglem]

When your child has active strep when do you find you see the biggest affects of the pandas? During or after the infection?

 

My dr. ruled out strep based on titers which I have since learned here means nothing. That said a few days ago I noticed ds's throat clearing had come back and he had an unusual tantrum. I actually had thought that if I didn't know better I would think someone had strep in my house.. sure enough, yesterday I found out my dd has strep and the dr. (not the one I am seeing about pandas but my regular ped) took pity on me crying at this finding and told me to bring ds in to culture him. I know he did not expect it to be positive but it the quick strep test came back positive for ds too. So far really it's just the throat clearing and his almost now typical mood that he has... Our bedtime routine of him saying he's afraid to be alone.. it has not been any worse, just me having to promise to check on him and to hold a sign reminding me to check on him... he added one thing to that saying I need to keep him safe. But overall I keep waiting and wondering if maybe I am freaking for nothing.. is this all it will be or am I going to be in for a big surprise soon. I just keep thinking that I can deal with his moodiness and throat clearing and some eye blinking and checking on him till he falls asleep if this is it.

 

For my daughter, the only sign I saw of a strep infection was the behaviors (OCD and raging). So, it was kinda simultaneous. But, I think she had undetected strep for years causing problems that were dismissed because of her autism dx (makes me wonder how much the PANDAS actually contributed to the autism). Before she was put on proph. Abx, we went through about 2 years of her getting swabbed +, course of Abx, behaviors returning 3-5 days after finishing Abx, & repeat ad nauseum. I'd get your son (and maybe your daughter, too) swabbed again 5-7 days after finishing the Abx- just to make sure he's really cleared.

[pmoreno]

When your child has active strep when do you find you see the biggest affects of the pandas? During or after the infection?

 

My dr. ruled out strep based on titers which I have since learned here means nothing. That said a few days ago I noticed ds's throat clearing had come back and he had an unusual tantrum. I actually had thought that if I didn't know better I would think someone had strep in my house.. sure enough, yesterday I found out my dd has strep and the dr. (not the one I am seeing about pandas but my regular ped) took pity on me crying at this finding and told me to bring ds in to culture him. I know he did not expect it to be positive but it the quick strep test came back positive for ds too. So far really it's just the throat clearing and his almost now typical mood that he has... Our bedtime routine of him saying he's afraid to be alone.. it has not been any worse, just me having to promise to check on him and to hold a sign reminding me to check on him... he added one thing to that saying I need to keep him safe. But overall I keep waiting and wondering if maybe I am freaking for nothing.. is this all it will be or am I going to be in for a big surprise soon. I just keep thinking that I can deal with his moodiness and throat clearing and some eye blinking and checking on him till he falls asleep if this is it.

 

 

As far as how bad the symptoms will get - its anybody's guess. From personal experience, my daughter's were much worse the first episode - with a lot of angry outbursts, crying, not being able to fall asleep or stay asleep and completely fearful at night. More symptoms than I care to mention, then as she gradually got better, had a 3 month remission and restarted her second episode, it was mild compared to that, but it seems that the symptoms change, this time more eye blinking, squinting, spaciness, some night time fears but not as bad, continued sleeplessness but not as bad, difficulty concentrating on school work but not as bad. I've heard some parents here say that it was worse the second time - so as you can see it varies with each child and varies with each episode and sometimes even changes during the episodes. Gaby had more eye blinking and squinting at first (in August, Sept. Oct - that's gone now - post IVIG), but she still has sleep issues, talks to herself, has sudden weird outbursts yelling at the air, still doesn't do school work up to her old standards. She has recently tested neg. for strep, but has an elevated ASO, just outside of normal range. What may be causing her symptoms right now is not strep, but the yeast from the abx. she has been on since IVIG in Oct. I had an OAT test done and the results came back with a huge amount of yeast and a number of other things being way off. I don't want to say too much about it yet, until I disucss with the MD so that I can figure out why and what and tx options. Pat

[ajcire]

Thanks everyone.. I guess I will have to wait and see. I think I am just looking for a sure sign that yes this is pandas and well there just isn't one. He is much better right now so far even with the strep than a few months ago when my dd had it but he didn't test positive for it....that was more intense especially the sleep issues.

 

No, he has not been on any antibiotics but is now on duricef. I asked my dr. to give him zithromax and explained that it was what the other dr. said he would have treated him with if his titers had been high. My regular ped told me that there was controversy in using zithromax to treat active strep and that he understood them using it prohpylactically.. he told me that he would support whatever the other dr. thought I should do and that I could have the other dr. contact him. He said to call the other dr. and let him know what was going on and that he was putting him on duricef... I had to start the antibiotic yesterday but unfortunately the other dr. was not in when I called.. he will call me tomorrow they said but really... I don't know that he will suggest anything being that he said it was not pandas with the low titers (I will talk to him about that though!) and he might just feel that if ds's symptoms are manageable which I would say they are right now that I should just leave it..

 

Here is my question.. .I probably asked before but I don't even know anymore what I asked.. .

 

If this is pandas but I do nothing because it's manageable... and it stays manageable... am I doing damage to my son? Other than the fact that he might have a better mood if he didn't have this going on.. the throat clearing and things are not impacting him.. only driving his parents crazy at times but he doesn't seem to do it at school according to his teacher.

 

 

 

When your child has active strep when do you find you see the biggest affects of the pandas? During or after the infection?

 

My dr. ruled out strep based on titers which I have since learned here means nothing. That said a few days ago I noticed ds's throat clearing had come back and he had an unusual tantrum. I actually had thought that if I didn't know better I would think someone had strep in my house.. sure enough, yesterday I found out my dd has strep and the dr. (not the one I am seeing about pandas but my regular ped) took pity on me crying at this finding and told me to bring ds in to culture him. I know he did not expect it to be positive but it the quick strep test came back positive for ds too. So far really it's just the throat clearing and his almost now typical mood that he has... Our bedtime routine of him saying he's afraid to be alone.. it has not been any worse, just me having to promise to check on him and to hold a sign reminding me to check on him... he added one thing to that saying I need to keep him safe. But overall I keep waiting and wondering if maybe I am freaking for nothing.. is this all it will be or am I going to be in for a big surprise soon. I just keep thinking that I can deal with his moodiness and throat clearing and some eye blinking and checking on him till he falls asleep if this is it.

 

 

As far as how bad the symptoms will get - its anybody's guess. From personal experience, my daughter's were much worse the first episode - with a lot of angry outbursts, crying, not being able to fall asleep or stay asleep and completely fearful at night. More symptoms than I care to mention, then as she gradually got better, had a 3 month remission and restarted her second episode, it was mild compared to that, but it seems that the symptoms change, this time more eye blinking, squinting, spaciness, some night time fears but not as bad, continued sleeplessness but not as bad, difficulty concentrating on school work but not as bad. I've heard some parents here say that it was worse the second time - so as you can see it varies with each child and varies with each episode and sometimes even changes during the episodes. Gaby had more eye blinking and squinting at first (in August, Sept. Oct - that's gone now - post IVIG), but she still has sleep issues, talks to herself, has sudden weird outbursts yelling at the air, still doesn't do school work up to her old standards. She has recently tested neg. for strep, but has an elevated ASO, just outside of normal range. What may be causing her symptoms right now is not strep, but the yeast from the abx. she has been on since IVIG in Oct. I had an OAT test done and the results came back with a huge amount of yeast and a number of other things being way off. I don't want to say too much about it yet, until I disucss with the MD so that I can figure out why and what and tx options. Pat

[EAMom]

Hi Erica,

 

Did your dd have any strep symptoms (aside from your son's throat clearing!) when you brought her in? Just curious. If she didn't it's likely both your kids (like mine) tend to be strep carriers...they get strep without the typical symptoms (sore throat, fever etc). It's great you were on the ball with getting both kids cultured!

 

Azith. is more effective for strep carriers than other abs.

 

Our dd's symptoms got worse with 2mo. of untreated strep carriage after tooth extractions...but the ped. rheumatologist said nose picking, and dental cleaning can cause the same thing...strep gets released from the throat/mouth into the bloodstream (causing worsening of PANDAS symptoms.)

 

Anyway, be sure to get repeat cultures about 3 weeks after stopping antibiotics. If you culture too soon after abs, you may get a false neg.

 

One thing I realized about PANDAS is that it affected my dd in more ways than I initially thought. For example she now has a fine motor tremor (even though she's on 250mg azith./day) which gets worse when around strep.

 

Whether your son is being negatively affected by not treating the PANDAS aggressively is a bit unknown as different kids seem to react differently...there don't seem to be good studies out there discussing whether certain kids develop permanent neurological damage (chronic tics, ocd into adulthood etc) b/c of PANDAS. Certainly, it's no fun having PANDAS...bad moods, motor problems, tics. Also, some people have found that subsequent episodes become less responsive to antibiotics.

 

Unfortunately, there are a lot of unanswered questions here

 

I would also like to add that your son's low titers are irrelevant if you have PANDAS behaviors that correlate with postive strep cultures (in either child). I hope your doc eventuallly realizes this!

[ajcire]

Hi Erica,

 

Did your dd have any strep symptoms (aside from your son's throat clearing!) when you brought her in? Just curious. If she didn't it's likely both your kids (like mine) tend to be strep carriers...they get strep without the typical symptoms (sore throat, fever etc). It's great you were on the ball with getting both kids cultured!

 

Azith. is more effective for strep carriers than other abs.

 

Our dd's symptoms got worse with 2mo. of untreated strep carriage after tooth extractions...but the ped. rheumatologist said nose picking, and dental cleaning can cause the same thing...strep gets released from the throat/mouth into the bloodstream (causing worsening of PANDAS symptoms.)

 

Anyway, be sure to get repeat cultures about 3 weeks after stopping antibiotics. If you culture too soon after abs, you may get a false neg.

 

One thing I realized about PANDAS is that it affected my dd in more ways than I initially thought. For example she now has a fine motor tremor (even though she's on 250mg azith./day) which gets worse when around strep.

 

Whether your son is being negatively affected by not treating the PANDAS aggressively is a bit unknown as different kids seem to react differently...there don't seem to be good studies out there discussing whether certain kids develop permanent neurological damage (chronic tics, ocd into adulthood etc) b/c of PANDAS. Certainly, it's no fun having PANDAS...bad moods, motor problems, tics. Also, some people have found that subsequent episodes become less responsive to antibiotics.

 

Unfortunately, there are a lot of unanswered questions here

 

I would also like to add that your son's low titers are irrelevant if you have PANDAS behaviors that correlate with postive strep cultures (in either child). I hope your doc eventuallly realizes this!

[ajcire]

My daughter had a sore throat.. she is 4 and told me that her throat always hurts.. she has had strep in the past but usually with fever. This time no fever. The dr. said her throat was raw. My son did not have any symptoms although I think he did say one time the other day his throat hurt but that was the end of it.. The other times he had strep he had no typical symptoms.. he had pink eye one time and the other he was just checked because everyone else in the house had it.

 

I just posted another thread though and the good news is that the dr. I saw for the pandas said that even though he originally said that the titers were low and that ruled it out that what I am seeing with the changes and the positive throat culture overrides the titers. He is willing to prescribe 3 months of zithromax (2 times a week for the 3 months).

 

I am getting nervous though.. he has a dental appt the end of january for a cleaning.

 

 

Hi Erica,

 

Did your dd have any strep symptoms (aside from your son's throat clearing!) when you brought her in? Just curious. If she didn't it's likely both your kids (like mine) tend to be strep carriers...they get strep without the typical symptoms (sore throat, fever etc). It's great you were on the ball with getting both kids cultured!

 

Azith. is more effective for strep carriers than other abs.

 

Our dd's symptoms got worse with 2mo. of untreated strep carriage after tooth extractions...but the ped. rheumatologist said nose picking, and dental cleaning can cause the same thing...strep gets released from the throat/mouth into the bloodstream (causing worsening of PANDAS symptoms.)

 

Anyway, be sure to get repeat cultures about 3 weeks after stopping antibiotics. If you culture too soon after abs, you may get a false neg.

 

One thing I realized about PANDAS is that it affected my dd in more ways than I initially thought. For example she now has a fine motor tremor (even though she's on 250mg azith./day) which gets worse when around strep.

 

Whether your son is being negatively affected by not treating the PANDAS aggressively is a bit unknown as different kids seem to react differently...there don't seem to be good studies out there discussing whether certain kids develop permanent neurological damage (chronic tics, ocd into adulthood etc) b/c of PANDAS. Certainly, it's no fun having PANDAS...bad moods, motor problems, tics. Also, some people have found that subsequent episodes become less responsive to antibiotics.

 

Unfortunately, there are a lot of unanswered questions here

 

I would also like to add that your son's low titers are irrelevant if you have PANDAS behaviors that correlate with postive strep cultures (in either child). I hope your doc eventuallly realizes this!

[TiredMom]

Hi Erica,

My 10yr DD has PANDAS. After over a year of searching for a Dr willing to prescribe antibiotics, I suddenly found 2. One prescription is a dosage I see commonly posted here - 250mg per day. The second Dr prescribed 400mg every 3 days - I haven't seen this before. I saw in your post that your DR" He is willing to prescribe 3 months of zithromax (2 times a week for the 3 months)". May I ask what the dosage is? It seems there are options in azith dosage, and I'm wondering what the DRs base this on? Thanks! Peggy

[ajcire]

I haven't picked up the script yet so I honestly don't know but I will be picking it up later. I will let you know what the dose is. It sounds like my dr. is doing more of the every 3 days.. he basically told me to pick 2 days a week.. like monday and Thursday. He told me to pick up a probiotic too although he said it likely won't be a problem on his stomach.

 

 

 

Hi Erica,

My 10yr DD has PANDAS. After over a year of searching for a Dr willing to prescribe antibiotics, I suddenly found 2. One prescription is a dosage I see commonly posted here - 250mg per day. The second Dr prescribed 400mg every 3 days - I haven't seen this before. I saw in your post that your DR" He is willing to prescribe 3 months of zithromax (2 times a week for the 3 months)". May I ask what the dosage is? It seems there are options in azith dosage, and I'm wondering what the DRs base this on? Thanks! Peggy

[EAMom]

Hi Erica...

I also replied to your other post before seeing this one...

since your son (and dd) are currently strep positive, my opinion is that you should start Azith. daily (even if it's only for 5 days).

 

The 2x weekly is a prophylactic to prevent a new infection...I don't think that will be enough if an infection is already established?? Perhaps check with an immunologist (that is my guess as to what kind of doc would know this.)

[ajcire]

To answer the question of the dose it is 200mg.... so it sounds lower than what some are saying.