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Steroids and major tics...anyone tried


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Yes, I am without kids for a bit, so I am posting all the stuff that has been keeping me awake at night.

 

Our pandas doc's next plan for dd is to try a 30 day steroid taper. She has been on abx for almost 3 months, and not much help. I believe either there is no infection left, or it was viral, or still underlying and we're just not getting it. In any case, I am very, very afraid of steroids. I am afraid of making things worse. Psychosis, rages, tics, etc......

 

I am not comfortable starting them without a more complete workup (that will be another post :wacko: ) but wanted to see if anyone with a child with many tics had tried steroids successfully? WE have the ocd too, and if it were only ocd, I would probably be more inclined to try.

 

Also, why do them, if they are not a permanent fix....just a temporary?

 

What's better, 5 day burst or 30 day taper? I've heard steroids longer than 2 weeks can cause permanent bipolar disorder!

 

Can they help if you are not trying them right away? The major tics started 7 months ago, but the ocd, etc...has been longer.

 

Thanks for any input....and for putting up with my rambling...

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We tried a 2 week steroid dose for dd who had tics and OCD. The tics did get worse. Actually, much, much worse. However - after stopping the steroids her tics went away for good. We've been tic-free for a year. The OCD is still there, and as bad as it always has been. Her doctor said the reason her tics got worse was because she was "rebounding" and it was an indication that the steroids possibly worked. I never really understood that completely.

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My son did not have tics, but just wanted to say to only try things that you are comfortable with even if it's a PANDAS doctor recommending somethng. You're the parent, it's your child, you make the ultimate decision. Unfortunately, tics are sometimes one of the hardest symptoms to get rid of.

Edited by Vickie
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Guest pandas16

In my case both tics & OCD got horribly worse on steroids- then they went away completely. The doctor said that things get worse before better as the body is trying to rid itself of toxins and bad antibodies. I think it really depends on the kid. Sometimes tics are more difficult to get rid of, sometimes OCD. For me, OCD was more difficult.

Edited by pandas16
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We did a 5 day burst back in October when he tics were exploding. 2 weeks after, all tics stopped. He is just starting some behaviors again, and the antibiotics didn't seem to help, so we're considering another steriod burst. I share your concern about long term steriod use. He actually has asthma, so has been on steriods before for that.

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ok...my ds's are ticcers...sot that is the mainm, only symptom we work on...others like handwriting which stink i can deal with..and if he has other issues i can chalk them up to being what ever age, or being ill..they are so subclinical, i have a hard time noting them as a problem

but before i go to far let me ditto Vickie...no matter what doc you go to you are your own and your childs advocate...

 

the one i am on journey for is oldest 10 to be 11.

i think you kinda know my story...

 

so..after about 10 months of onset and no one giving him abx and trying other types of tmj and brain balance...we found high myco p..

 

start biaxin and steriod burst(5days) at same time...about 2nd day, i think i hear screech..by 3rd day. we definitley have screehces....

now was it the biaxin, steroid, herxing, yeast..idk.....biaxin in used for lymes...steroids lets lymes propigate..from what i understand there is herxing and woould not be surpised if that were true for pandas too...

steroids really let yeast take over...(mind you all the years that ds has been on abx ..i did not give probitots over the course of his 9 prior years...so i am sure his stomach was a mess going in)

it got pretty bad...screechs would set me off balance, ears ringing, of course crying..including constant movements

then 3 weeks post...it all calmed down to almost nothing..then 4th or 5th day it all rebounded...

 

the only time the screeches went away was towards the end of vanco or clyndamiec which we did 3 times...so we had 3 weeks reprieves each of those times

 

we were denied ivig in may-june...thought that means ,which i really felt would be better was to go for pex....

per waiting for an appointment...we did a taper...i thought that might hold, less reboudn with taper..but now knowing about yeast did it with diflucan...

well it was beautiful...as we continued it just got better and better, to virtually tic free...then school started one week after taper and things started to come back...

 

i do think a taper can work...i do think as a mom of a ticcer that i would strongly suggest doing difucan with it...i would strong suggest being on abx for a month or 2 prior to steriod...

 

why did ds come back...idk..after they came back i put ds on list for pex...and had tonsils out...things got better again and thought maybe that was the trick..but it could have been the clyndamicin... we are currently persuing lymes treatement...with original test..to me and my docs, we all thought it was neg...now that i know more, i should have done a followup test in a month or 2...and now we have a couple more pretty strong indications that lymes is with us.......

AND NOw...when i think back to this onset...(we have had 15 before that remitted with a standard course of abx)....he pulled his hair out one month before he started to tic(he has done this 3 more times since onset which has only lasted a month each and this onsest is going on 2 years)...his reason for pulling out hair is, he says he feels something crawling under his skin!!!!!

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kcdc3--how long had dd had the tics? can you pm me who your doctor is who did a 2 week taper?

 

We tried a 2 week steroid dose for dd who had tics and OCD. The tics did get worse. Actually, much, much worse. However - after stopping the steroids her tics went away for good. We've been tic-free for a year. The OCD is still there, and as bad as it always has been. Her doctor said the reason her tics got worse was because she was "rebounding" and it was an indication that the steroids possibly worked. I never really understood that completely.

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I have read that steroids increase dopamine, and dopamine increases tics.......that's what scares me.. And making things worse. I also have read that a full viral panel should be done first....ugh...

 

i do think that is a good idea to get panels done...then you have an idea what to really go after.....

but start with those that are typically listed here.....you can test till the cows come home...start with some of the more known triggers...and check vits d, b, ferritin, mag

thyroid...things that are common and help support immune system

if you have been doing abxs you should check liver enzymes when you go in...every 3-6 months....most children don't have problems as they process stuff so fast...but you can be sure and feel better about how you procede

 

include igg subclasses and cd57(labcorp only)

and i think you know the other ones.

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Fixit--why Labcorp only for CD 57?? We had it done thru Igenex, and it was high!!! Like 243....

 

 

I have read that steroids increase dopamine, and dopamine increases tics.......that's what scares me.. And making things worse. I also have read that a full viral panel should be done first....ugh...

 

i do think that is a good idea to get panels done...then you have an idea what to really go after.....

but start with those that are typically listed here.....you can test till the cows come home...start with some of the more known triggers...and check vits d, b, ferritin, mag

thyroid...things that are common and help support immune system

if you have been doing abxs you should check liver enzymes when you go in...every 3-6 months....most children don't have problems as they process stuff so fast...but you can be sure and feel better about how you procede

 

include igg subclasses and cd57(labcorp only)

and i think you know the other ones.

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you might want to read lymes board...

as far as i know the only one is labcorp.. i haven't heard reports on the igenex version

 

http://www.researchednutritionals.com/information.cfm?ID=200

 

CD57 markers can also be expressed on other kinds of cells, including T-cells, so it is important to distinguish between CD57+ T-cells and CD57+ NK cells. Clinicians need to be aware that many testing laboratories claiming to perform the CD57 test are actually looking at CD57+ T-cells rather than CD57+ NK cells, which are the cells of interest in chronic Lyme disease.

 

and mind you...if you don't think its lymes and feel you have investigated enough and your mommy gut says back off, that's ok...

we let it go for another 8 months...and maybe the fact we did more abx during that time has released some more lymes particles...don't know...but now it seems to be screeming at me, when i combine the most recent tests...past tests and past and present symptoms and knowledge of symptoms ds is just starting to talk about...

(he's a guys guy...pulling teeth for any info)..and i don't want to feed him info..i want him to explane his own condition to me w/o prompting him or making suggestive influences..

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Yes, I am without kids for a bit, so I am posting all the stuff that has been keeping me awake at night.

 

Our pandas doc's next plan for dd is to try a 30 day steroid taper. She has been on abx for almost 3 months, and not much help. I believe either there is no infection left, or it was viral, or still underlying and we're just not getting it. In any case, I am very, very afraid of steroids. I am afraid of making things worse. Psychosis, rages, tics, etc......

 

I am not comfortable starting them without a more complete workup (that will be another post :wacko: ) but wanted to see if anyone with a child with many tics had tried steroids successfully? WE have the ocd too, and if it were only ocd, I would probably be more inclined to try.

 

Also, why do them, if they are not a permanent fix....just a temporary?

 

What's better, 5 day burst or 30 day taper? I've heard steroids longer than 2 weeks can cause permanent bipolar disorder!

 

Can they help if you are not trying them right away? The major tics started 7 months ago, but the ocd, etc...has been longer.

 

Thanks for any input....and for putting up with my rambling...

 

I guess it was my post recently that scared you...sorry! We did 30 day taper and it did take the tics away (95%) so I guess it was worth it. Yes we had the worst psychotic rages I have ever witnessed. 4 hours one night (but that night I gave ativan and I think it doubled the rage). As the taper went down, so did the rages, and risperdal helped us get through it. My son is now off the steroid and he is also off the risperdal. We have only had one rage since then and I think it had more to do with a gut bacteria that developed recently. I do fear that we did some permanent damage, but so far it is not looking like we did. I guess I would have to say that both the tapers we did with our sons (ds6 and ds3) were successful in that we got the outcome that we were looking for and it seems to have lasted (so far). We are now managing him with weekly azith which is keeping the pandas symptoms 95% gone.

 

Hope that helps. Sorry if it scares you. Most kids do not experience that level of psychosis with steroids. Oh, the other thing is that we (doc and I) think it was possible that it happened due to a drug interaction (ketoconozole and prednisone). the keto raised the steroid in his system too high...

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Fixit--why Labcorp only for CD 57?? We had it done thru Igenex, and it was high!!! Like 243....

 

 

I have read that steroids increase dopamine, and dopamine increases tics.......that's what scares me.. And making things worse. I also have read that a full viral panel should be done first....ugh...

 

i do think that is a good idea to get panels done...then you have an idea what to really go after.....

but start with those that are typically listed here.....you can test till the cows come home...start with some of the more known triggers...and check vits d, b, ferritin, mag

thyroid...things that are common and help support immune system

if you have been doing abxs you should check liver enzymes when you go in...every 3-6 months....most children don't have problems as they process stuff so fast...but you can be sure and feel better about how you procede

 

include igg subclasses and cd57(labcorp only)

and i think you know the other ones.

 

 

 

Regarding why LabCorp is recommended for CD57 ... First off, Quest doesn't have it. I was not aware that IGeneX did it, but won't dispute whether they might. Look, they specialize in lyme, it would make sense for them to have the test. There is at least one other company that does it, I don't remember the name. But, LabCorp used to be the only one, or, sort of, it was actually started by a specialty lab and then was sold to LabCorp. But, historically, LabCorp and their methods has been around the longest, they were initially the ones the lyme docs were using. So now, it is the LabCorp results that they can better put into context with other patients. It might be that a slightly different method would tend toward higher or lower results, so, sticking with LabCorp is a way to eliminate one reason for variation in the results.

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