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All though we have been down this Pandas road for quite awhile and tried many treatments including IVIG, we have never until recently done a steroid burst. We are in day 3 of a 5 day burst. The good news: no worse tics as I had feared, the bad news: not any better yet. For those with tics, what was your time frame for improvement? Is a five day even enough for improvement? Thanks!

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how timely....i tried twice today to do a poll about ivig and tics and i can't figure it out

 

let me first answer with what i know....per our burst in winter..it took 21 days to see about 3-4-5 days of mild, mild tics...it was fantastic.....per doc k..not sure if it is just in relation to diagnostic test...up to 4 weeks to see effect

 

if i may ask ...because moderate to severe side of tics are our problem....

 

how old is your child?

how long from onset till you did ivig?

how long ago did you do ivig?

do you think the trigger this time was strep, myco p..dont' know?

is this the 1st ivig?

 

AND PLEASE anyone with tics.as main presentation...could you please answer any of these questions.....i feel like as soon as i can get approval.....i am pretty sure we are doing this....

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Fixit,

 

To answer your questions...

 

My DD is 14 now. Her initial onset of PANDAS was at age 2.8 and although she had only 1 tic back then (rages were primary problem), it worsened over the years, particularly in prepubescent years. Prior to starting first (high-dose) IVIG at age 12 she had full-blown TS (both motor and vocal tics). Her trigger was definitely strep -- anti-DNASE B was 2750. We did not see any changes for 2 1/2 months and then we saw a 90% reduction in tics. This improved to 95% reduction. We redid high-dose infusion in March 2010 and once again, it took 2 1/2 months to kick in. The last tic is now gone. While rages and OCD have worsened after being re-infected, tics never got worse since initial IVIG infusion.

 

I wish you luck with your IVIG!

 

Nancy

 

how old is your child?

how long from onset till you did ivig?

how long ago did you do ivig?

do you think the trigger this time was strep, myco p..dont' know?

is this the 1st ivig?

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All though we have been down this Pandas road for quite awhile and tried many treatments including IVIG, we have never until recently done a steroid burst. We are in day 3 of a 5 day burst. The good news: no worse tics as I had feared, the bad news: not any better yet. For those with tics, what was your time frame for improvement? Is a five day even enough for improvement? Thanks!

 

We did a 5 day burst in April, and saw improvement on day 8...and it was dramatic improvement! To date, her tics have not returned how bad they were pre-burst, although they have started to increase a bit over the past few weeks. Not sure if the increase is simply the burst finally wearing off, or something else.

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8 days PAST last day of burst, so, on day 13 from the start of the burst....the tics disappeared. It can take a bit for the inflammation to go down...hang in there......you are not even close to failure.

 

I, too, would love to hear your take on IVIG...and what Dr. K has to say about your son not being cured by it. Sorry, Bmom....I am just skeptical of his claim of cure.........

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We are 18 months past IVIG. Things were better past the IVIG, but not smooth sailing as I had hoped. My son had just turned 10 when he got the IVIG. Tics seem to be the hardest one to be successful with. Since the IVIG, my son had strep and H1n1 and a few other things that made healing more difficult. Teeth also seem to cause him problems(loosing and cleanings). His last problem was set off by losing two teeth and an ear infection back to back. Usually we would just up Augmentin and things would settle. We had changed antibiotics though a few months prior and even though he is back on the Augmentin, he seems to be still having trouble. Dr. K says there are some kids that need IVIG 2 (usually around 9-15 months post and usually older kids with tics). We seem to in some ways fit that pattern. Most of the other Pandas doctors don't really see ivig as a cure. More of a treatment. A lot of the illnesses that use IVIG also use it more of a treatment than cure. Hard to say. We are weighing our options at this point. I am feeling that it is worth it to give ivig another shot if needed. My thoughts are that I do not want him to have permanent damage and feel it is the best chance to avoid that and heal. These are difficult choices to make for our children. A few doctors that we have spoken to have said to start trying tic medications instead. I am not sure what the best choice is. For the long run, I am leaning towards another shot at ivig.

Edited by bmom
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Unfortunately nothing good to report yet. We have finished it and today is day 6(one day past the last steroid pill). It sounds like many have had a delayed response. Hoping that is our case. Please send us positive thoughts.

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Hoping for good results for you! Really, with my son...it went from tics, to nothing...there really was no inbetween....it was amazing!

 

How bad are the tics right now?

 

Hang in there......you still got time!!!!

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Our DS9's main presentation is tics - he was on a 5 day steroid burst (60 mg prednisone a day for 5 days) and was a completely different child on day 6. Totally calm, focused and still. The tics began to return in a small way after a couple of days, and now they are still around, although they are 'smaller' than they used to be (mostly facial). The spring is always the worst time for him because of his allergies so his level of tics right now is good compared to previous years. The other issue for him, which is mild anxiety, went away too and is still not back, 4 months later.

 

We did a second burst a couple of months after the first and did not see the same results with the tics.

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Tics are probably moderate at this point. While on Biaxin, they we closer to moderate more severe as there were more going on. They are changing weekly and he seems to have two going on right now. They change in severity daily and sometimes hourly. We have found a neurologist in town that said she would do IVIG according to Dr. K's protocol. We meet with her tomorrow to follow up with what she wants to do after talking with Dr. K. Thanks for the good thoughts.

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