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Steroids for chronic pandas....late stage pandas?


eljomom

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Not to belabor this whole steroids thing, but has anyone done steroids for a child (especially one with many tics in addition to some ocd), but after about 3 years of symptoms? Is it too late? Are steroids best only when caught in exacerbation early? From those who have been posting about the success of steroids, it seems like those who get them right away, pretty quickly after exacerbation, have success. Wondering if the ones who DON'T have success are the ones who waited years to get treatment? WE went about 2 years with some germ ocd---thinging dd was just a quirky pain in the patooty, to aabout 3 tics shortly after pneumonia (they weren't constant, and again, didn't alarm us, since many kids get transient tics....and NEVER knew about linking to illness), then the big explosion after the fever...head to toe tics, separation anxiety, more ocd, etc....but it has not stopped. It's been 14 months since then. So I do wonder if steroids would even help now?

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If it was me, I would want to discuss the situation with a neurologist, due to the ticcing severity. If your Ps doctor recommends steroids, then the next question I would want to know is IF it is not Ps, and we try steroids, are there any possible long term negative effects (ie., if ticcing might get worse but then go back down to baseline, then is there anything to lose in trying steroids?)

 

From reading your posts, I understand the lyme considerations, but has your child been identified as + for lyme?

 

If so, then LLMD would be my next move, to consult at least--

 

Sometimes we don't know until we try.

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Not to belabor this whole steroids thing, but has anyone done steroids for a child (especially one with many tics in addition to some ocd), but after about 3 years of symptoms? Is it too late? Are steroids best only when caught in exacerbation early? From those who have been posting about the success of steroids, it seems like those who get them right away, pretty quickly after exacerbation, have success. Wondering if the ones who DON'T have success are the ones who waited years to get treatment? WE went about 2 years with some germ ocd---thinging dd was just a quirky pain in the patooty, to aabout 3 tics shortly after pneumonia (they weren't constant, and again, didn't alarm us, since many kids get transient tics....and NEVER knew about linking to illness), then the big explosion after the fever...head to toe tics, separation anxiety, more ocd, etc....but it has not stopped. It's been 14 months since then. So I do wonder if steroids would even help now?

 

 

Did a doctor rule out rheumatic fever?

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I swear this is my last post because I feel like I am hounding you!

 

I remember asking Dr. K this same question....because my son had had PANDAS for 2 years before we found out what it was. First onset occured after strep when he was 3...he developed "quirky" germ OCD like you mentioned, and we too, let it fly right over our heads...just thought it was a phase. Everything resolved (he did get antibiotics for the strep...but we never put it together)....anyway, everything resolved and we never thought a thing of it again until 2 years later when he got strep and the **** hit the fan.....BAD! He did not get his first steroid taper until a year AFTER the "bad one", he was doing MUCH better at the time, but, he still showed improvement. The next burst was another year later when he started ramping up with tics from Pertussis...we quickly nipped that in the bud with a 5 day course.

 

So, as Dr. k says and from what I experienced..with A PANDAS child..if they are symptomatic...you still SHOULD see results regardless of duration of illness.

 

Okay....BYE BYE!!!! :lol:

Edited by P.Mom
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wickedmania....Nope. Curious why you ask? I have wondered that myself, especially since my father-in-law had it as a child, and died very young of a second heart attack....

 

Not to belabor this whole steroids thing, but has anyone done steroids for a child (especially one with many tics in addition to some ocd), but after about 3 years of symptoms? Is it too late? Are steroids best only when caught in exacerbation early? From those who have been posting about the success of steroids, it seems like those who get them right away, pretty quickly after exacerbation, have success. Wondering if the ones who DON'T have success are the ones who waited years to get treatment? WE went about 2 years with some germ ocd---thinging dd was just a quirky pain in the patooty, to aabout 3 tics shortly after pneumonia (they weren't constant, and again, didn't alarm us, since many kids get transient tics....and NEVER knew about linking to illness), then the big explosion after the fever...head to toe tics, separation anxiety, more ocd, etc....but it has not stopped. It's been 14 months since then. So I do wonder if steroids would even help now?

 

 

Did a doctor rule out rheumatic fever?

Edited by eljomom
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FWIW--DS had pandas symptoms on and off since age 6 and he is 15 now. We tried a steroid burst two years ago. Bad news is that he didn't get any relief, possibly because he hadn't been on antibiotics first and lab tests indicated later that he had had an active infection at the time when he was prescibed the steroids. However, the good news is that he has always been an active ticcer and there was absolutely no increase in tic activity. I know this is anecdotal and you would rather have real scientific info, but at least here is one case of ticcing not increasing from steroids.

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P.Mom---you are NOT hounding me. I appreciate your insight....always have!

See, with my dd, I don't think the germ ocd ever went away. Then again, she was almost CONSTANTLY SICK from 3 years of age (interesting that her immune panel was normal....has had pneumonia 4 times too!). URI/ear infection/cough...pretty much monthly for years. So maybe never a shot to "heal" or "remit" once it started (the ocd). So when you say 2 years since onset, you mean onset, then remission of symptoms until explosion, right? So when it hit 2 years later, you got right on it, right? I'm talking NO REMITTANCE in over 3 years.

 

Did you go see Dr. K? I thought I knew who your pandas doc was......

 

 

I swear this is my last post because I feel like I am hounding you!

 

I remember asking Dr. K this same question....because my son had had PANDAS for 2 years before we found out what it was. First onset occured after strep when he was 3...he developed "quirky" germ OCD like you mentioned, and we too, let it fly right over our heads...just thought it was a phase. Everything resolved (he did get antibiotics for the strep...but we never put it together)....anyway, everything resolved and we never thought a thing of it again until 2 years later when he got strep and the **** hit the fan.....BAD! He did not get his first steroid taper until a year AFTER the "bad one", he was doing MUCH better at the time, but, he still showed improvement. The next burst was another year later when he started ramping up with tics from Pertussis...we quickly nipped that in the bud with a 5 day course.

 

So, as Dr. k says and from what I experienced..with A PANDAS child..if they are symptomatic...you still SHOULD see results regardless of duration of illness.

 

Okay....BYE BYE!!!! :lol:

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thanks lynn...I trust tried-and-true anecdotal just fine!! Has anything helped him?

 

FWIW--DS had pandas symptoms on and off since age 6 and he is 15 now. We tried a steroid burst two years ago. Bad news is that he didn't get any relief, possibly because he hadn't been on antibiotics first and lab tests indicated later that he had had an active infection at the time when he was prescibed the steroids. However, the good news is that he has always been an active ticcer and there was absolutely no increase in tic activity. I know this is anecdotal and you would rather have real scientific info, but at least here is one case of ticcing not increasing from steroids.

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Right now it looks like Clarithromycin is bringing him back to about 50%. IVIG, no lasting help. CBT, a bit of help and we are restarting it now. We decided to trial Tenex, but due to the incredible incompetence of our new (soon to be ex) pediatrician, we can't get clearance for it.

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HAHA.....Dr. Kovacevis was our first PANDAS doc we saw.

 

Yes, you got it right..onset, remission, and then expolsion 2 years later. (we now look back and realize he would have little bouts of "stuff" during those 2 years of "remission") No, we did not get right on it...we did not know what the heck was happening to him...we had never heard of PANDAS. Took about from August (explosion) until January to really get a diagnosis and it was then he (they) were put on proph. antibiotics. But, in the meantime, I had done research out the wazoo (like we all have) and just knew what we were dealing with, so, until I found a doc to put him (them) on proph. antibiotics, I did everything I could to get my hands on some abs.....so, explosion in August with strep...2 rounds of abs to clear strep....no treatment for 3 months (still mild symptoms that would wax and wane....motor tics developing (previously only had vocals)...various evolving tics)......250 mg a day of Amox. in December.....ran out for a couple weeks before on PEN VK in January. That is just the beginning of it all...the first 6 months...there was lots to come after that.

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eljomom- I have read some of your posts, and it is possible that I may have missed some pieces of information. I noticed in one of them you talked about your daughter having recurrent pneumonia when she was younger. My daughter is also not a "typical" PANDAS presenter although her brother is. She exacerbated last november after recieving the flu mist. We did strep titers which were only slightly elevated. My daughter did not respond to Zith either. Her immune tests were normal. Wasn't till Dr. M tested her for Myco P. that we figured it out. Her IgG and IgM for Myco p was very high. Even though many kids with myco p will respond to zith, my daughter did not have much response. Wasn't till she was switched to Biaxin that we started to see changes.

 

Funny thing was that I had even talked to her pediatrician about all the pneumonia and asked if this was normal and she blew me off. Now I realize that she was harboring systemic myco p which explains alot of the behavior she had at that age as well. It wasn't until after the flu mist that she got completely out of control. She has been on antibiotics for about 4 months and had 2 IVIG's and finally we are seeing recovery.

 

You may have already tested for this. If so, sorry to make you read this whole post. Just wanted you to know that even though lots of kids do great on Zith (my son as well), there are a few that will be non-responders. Most doctors love Zith because of its immune modulating effects, but if it isn't working it isn't working. I was shocked at the difference in my daughter when we switched.

 

Anyway, Just thought I would add in my 2 cents. Best of luck....

 

Dedee

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we tested her myco p igg and igm (dr. t ordered it after a phone consult). both were negative. when i looked back at her records and saw all the pneumonia, then saw people posting about myco p... i thought we'd figured it out.

 

eljomom- I have read some of your posts, and it is possible that I may have missed some pieces of information. I noticed in one of them you talked about your daughter having recurrent pneumonia when she was younger. My daughter is also not a "typical" PANDAS presenter although her brother is. She exacerbated last november after recieving the flu mist. We did strep titers which were only slightly elevated. My daughter did not respond to Zith either. Her immune tests were normal. Wasn't till Dr. M tested her for Myco P. that we figured it out. Her IgG and IgM for Myco p was very high. Even though many kids with myco p will respond to zith, my daughter did not have much response. Wasn't till she was switched to Biaxin that we started to see changes.

 

Funny thing was that I had even talked to her pediatrician about all the pneumonia and asked if this was normal and she blew me off. Now I realize that she was harboring systemic myco p which explains alot of the behavior she had at that age as well. It wasn't until after the flu mist that she got completely out of control. She has been on antibiotics for about 4 months and had 2 IVIG's and finally we are seeing recovery.

 

You may have already tested for this. If so, sorry to make you read this whole post. Just wanted you to know that even though lots of kids do great on Zith (my son as well), there are a few that will be non-responders. Most doctors love Zith because of its immune modulating effects, but if it isn't working it isn't working. I was shocked at the difference in my daughter when we switched.

 

Anyway, Just thought I would add in my 2 cents. Best of luck....

 

Dedee

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wickedmania....Nope. Curious why you ask? I have wondered that myself, especially since my father-in-law had it as a child, and died very young of a second heart attack....

 

Not to belabor this whole steroids thing, but has anyone done steroids for a child (especially one with many tics in addition to some ocd), but after about 3 years of symptoms? Is it too late? Are steroids best only when caught in exacerbation early? From those who have been posting about the success of steroids, it seems like those who get them right away, pretty quickly after exacerbation, have success. Wondering if the ones who DON'T have success are the ones who waited years to get treatment? WE went about 2 years with some germ ocd---thinging dd was just a quirky pain in the patooty, to aabout 3 tics shortly after pneumonia (they weren't constant, and again, didn't alarm us, since many kids get transient tics....and NEVER knew about linking to illness), then the big explosion after the fever...head to toe tics, separation anxiety, more ocd, etc....but it has not stopped. It's been 14 months since then. So I do wonder if steroids would even help now?

 

I asked because you said symptoms developed after a fever. Did he at the same time have any joint/bone pain? Our son has had a similar pattern, been diagnosed with PANDAS, but the possibilty of rheumatic fever has been mentioned and he is going to see a cardiologist just to check out his heart.

Did a doctor rule out rheumatic fever?

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no...never even talked about ruling it out. I did mention my father-in-law. Wonder what symptoms are.

 

wickedmania....Nope. Curious why you ask? I have wondered that myself, especially since my father-in-law had it as a child, and died very young of a second heart attack....

 

Not to belabor this whole steroids thing, but has anyone done steroids for a child (especially one with many tics in addition to some ocd), but after about 3 years of symptoms? Is it too late? Are steroids best only when caught in exacerbation early? From those who have been posting about the success of steroids, it seems like those who get them right away, pretty quickly after exacerbation, have success. Wondering if the ones who DON'T have success are the ones who waited years to get treatment? WE went about 2 years with some germ ocd---thinging dd was just a quirky pain in the patooty, to aabout 3 tics shortly after pneumonia (they weren't constant, and again, didn't alarm us, since many kids get transient tics....and NEVER knew about linking to illness), then the big explosion after the fever...head to toe tics, separation anxiety, more ocd, etc....but it has not stopped. It's been 14 months since then. So I do wonder if steroids would even help now?

 

I asked because you said symptoms developed after a fever. Did he at the same time have any joint/bone pain? Our son has had a similar pattern, been diagnosed with PANDAS, but the possibilty of rheumatic fever has been mentioned and he is going to see a cardiologist just to check out his heart.

Did a doctor rule out rheumatic fever?

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