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Steroid burst in 14 year old


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I am familiar with the 5 day steroid burst. My 7 year old son is going to do the 5 day burst for the first time ever. We are also going to try it with my 14 year old daughter, but Dr. T is using a higher dose b/c she is an adult weight (130 #). I was wondering if anyone has used this higher dose with an older child and what the results, good and/or bad, were.

TIA.

Colleen

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My son is only 11 but is very big (130 lbs) and is on a 30 day tapering dose which started at 40 mg./day for 7 days. It has worked wonders for his mood and behavior with no ill effects. However, he caught a cold yesterday and today his legs are killing him. I think this is probably bone marrow working overtime to pump out antibodies since he is significantly immunosuppressed now as this is day 26 for him on pred.

 

 

 

 

I am familiar with the 5 day steroid burst. My 7 year old son is going to do the 5 day burst for the first time ever. We are also going to try it with my 14 year old daughter, but Dr. T is using a higher dose b/c she is an adult weight (130 #). I was wondering if anyone has used this higher dose with an older child and what the results, good and/or bad, were.

TIA.

Colleen

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My 12 yo daughter (145 lbs- thank you, risperdal!) did 60 mg x 7d, 40 x 7d, 20 x 7d, 10 x 7d

my 11 yo (125 lbs) is just starting week 2 of same schedule.

 

I am wondering if 250mg zithromax is enough for these weights?

 

Colleenrn-- are you one of the multiple PANDAS kids people?

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Colleen-

 

I am so sorry to hear you are having to do steroids- I hope things arent' so bad...

 

I am not sure what a medrol pack is, but, I am a strong advocate of a 4 week, tapering burst. My doc uses these as part of a treatment plan, and many of us have found long term remission from this type of RX. (my dds are little, so my dosing wont help, but I think it would be done by weight?).

 

I really don't think a 5 day burst is enough, at all.

 

Good luck, and keep us posted!

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Thank you for your responses! Yes, I have 4 children with PANDAS. None of my children have ever taken any steroids, so I am excited but nervous to see how it helps.

Dr. Trifiletti said we could start with a shorter course and just see how it goes. My children were exposed to strep over a month ago and even though we increased their Zithromax, two of them are still having problems.

My 7 yo will just do the 5 day steroid burst, but my 14 year old will do the larger dose. I will pick it up today, so I am not sure of the doses for my 14 yo.

 

Emuls-

Zithromax 250mg/day is a low dose for your children's weight. A treatment dose for that weight is 500mg/day. Were your children ever on a higher dose? If not and you are thinking it is not enough, you may want to talk to your doctor about increasing it. My niece weighs 65 lb. and her very conservative pediatrician doses her at 500mg/day as a treatment dose. My 14 yo weighs 130 and she has taken up to 750mg/day, as have I (I weigh a lot more than 130 :) Even my 80 lb. son takes 500mg/day as a treatment dose and between 250-375 as a prophylactic dose.

 

Colleen

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My daughter is 14 and because of her violent rages I was so afraid to try a steroid burst. I was told by a few doctors that it could easily make the rages worse. So I waited until she was hospitalized in a "controlled environment" (NOT!) to try it. That was 11 years after her initial onset of symptoms, which included rages. Boy do I wish I had tried a steroid burst all these years! We did a 30-day tapered dose (starting with 30 mg bid) and after two weeks she was back in remission. Colleenrn, I am hyper ventilating thinking that you have 4 children with PANDAS! I am hoping the burst helps your daughter!

 

Nancy

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I would concur with dcmom about the longer steroid course being a good idea. I know not every doc does it that way. we did not see improvement until day 10 of steroids- but was it due to 10 days of med or 10 days of beginning to heal- who knows?! I am only at day #8 with my second child affected by this mess!

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Dr. Trifiletti said we could start with a shorter course and just see how it goes.

 

Colleen, I agree w/the other posters about a longer course of steroids. Do you think it would be possible to push for an extension if you children are not having any significant side effects on the high dose? Five days just feels like it is stopping the medication before it can truly do it's job...just my general thoughts--obviously, it is between your family and your doctor to really decide.

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Karen,

He gave my 7 yo one refill, so he could take it for 10 days. I think I am going to see how they do on it, b/c maybe we could do a whole month of a tapered dose and this week could just bne their first week of it if he would extend it.

 

My niece and nephew did the 5 day steroid burst without benefits. The next time they did it, it was for a month and they started seeing results in week 2.

 

Can you do a 5 day steroid burst, stop and wait a week, then do a whole month of a tapered dose?

 

Does Dr. T usually just do a 5 day burst? I know Dr. Latimer uses a longer course.

 

I feel like I never know if what I am doing to try to help my kids is the right thing.

Colleen

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Karen,

He gave my 7 yo one refill, so he could take it for 10 days. I think I am going to see how they do on it, b/c maybe we could do a whole month of a tapered dose and this week could just bne their first week of it if he would extend it.

 

My niece and nephew did the 5 day steroid burst without benefits. The next time they did it, it was for a month and they started seeing results in week 2.

 

Can you do a 5 day steroid burst, stop and wait a week, then do a whole month of a tapered dose?

 

Does Dr. T usually just do a 5 day burst? I know Dr. Latimer uses a longer course.

 

I feel like I never know if what I am doing to try to help my kids is the right thing.

Colleen

Dr. T only prescribed 5 or 6 day courses for my dd when she was under his care. It would take 10-12 days to kick in and she'd get 5-10 days of relief from it. We did that monthly for 3 months, I think. It was not enough to sustain relief. Dr. B prescribed a 20 day taper (started with 40mg, ended up with 10mg) which he then extended at my requets to get us up to the IVIG date. (20 more days) The extension was only 10mg every other day but it brought her great relief coming on the end of the taper.

 

Angela

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Karen,

He gave my 7 yo one refill, so he could take it for 10 days. I think I am going to see how they do on it, b/c maybe we could do a whole month of a tapered dose and this week could just bne their first week of it if he would extend it.

 

My niece and nephew did the 5 day steroid burst without benefits. The next time they did it, it was for a month and they started seeing results in week 2.

 

Can you do a 5 day steroid burst, stop and wait a week, then do a whole month of a tapered dose?

 

Does Dr. T usually just do a 5 day burst? I know Dr. Latimer uses a longer course.

 

I feel like I never know if what I am doing to try to help my kids is the right thing.

Colleen

 

I am not positive, but I think anything beyond 7 days must be tapered down...so I wouldn't give your 7yr old the refill unless you have an extension for the tapering doses over the next week or two.

 

I don't know for sure if you can stop and wait a week, and then do a whole month...I don't see why not--other than it is interrupting treatment---but you may be lucky and see results in 5 days with permanence...and not have to go on...I wish we all had a crystal ball!!!

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