Steroid question....again

[OTSMITH]

Well , we just started a month long predisone run at 5 mg a day. It is our first. I am a bit torn with this and am looking for support/advice good or evil. I am concerned @ side affects and long term gut dammage. My daughter has SC and the chorea is doing well but her OCD is really complicating things for her. Will the predisone address the complusions. Is this worth it?

[dcmom]

My daughter's experience on the steroids was very good, and I would/will try again. She did four weeks- 2 weeks treatment, 2 weeks tapering off. In 4 days all of her issues were gone- she has ocd! Unfortunately she was exposed to strep during the taper down- so she had an uptick of symptoms, but the rages didn't come back. We didn't have any side effects. I would stick with it...

[OTSMITH]

DCMOM,thanks for that.im gonna share your story with my husband. One day someone should organize a retreat for all of our families on this forum to have a chance to meet in person. Would be great---

[Kayanne]

We also did six weeks of prednisone...5mg daily was the taper dose for week four--it was supposed to be our last week, but we saw excellent results right at the very end, and Dr. L extented the 5mg daily (as per our request) for two more weeks--we wanted to be sure we were really hitting the brain inflammation hard.

 

Our daughter is 6ys old and was 42lbs at the time--she started at 20mg 2X/day for week one; 10mg 2X/day for week two; 5mg 2X/day for week three; 5mg/day for week three; and that dose was extended for two more weeks.

 

Her side effects were also minimal (some raging behavior the first week or two, but she was already fighting us a lot prior to the pred, and a couple of pimples)...and she was brought back to us completely. We are currently not seeing any PANDAS behaviors at all. She had a difficult time making decisions...it was like obsessive thoughts were "shutting her down". She seemed ADD at first, and right before the steroid she was more autistic like--no socializing, competely withdrew into herself, startled easily.

 

I'm just wondering why your dose is so low? Is it because you are concerned about side effects...or is you child very small?

 

What "gut issues" are you concerned about with prednisone? I know it can upset the stomach, but I didn't think it was a permanent thing...maybe I'm wrong.

 

It is definately not a drug to be administered without real consideration, but so are all the treatments for PANDAS.

 

Like DCmom, I too, would try it again If she has another episode. I think it is a first line treatment that can be tried on new cases/mild cases prior to jumping right into IVIG or Plasmapheresis/PEX.

 

Good luck!

 

~Karen

[OTSMITH]

Thanks Karen for that indepth respone, well my daughter is 4 and weighs 35 lbs (your daughter sounds lean). So I guess that is why the low dose, also maybe her dosing is different for Sydenham Chorea (although , I believe she has PANDAS). Did your daughter gain weight and get the 'moon face" puffiness? my daughter can not wear clothes, socks or shoes, she has to pick her nose before speaking to someone and has chewed off all her hair,literally. She says her brain wont let her stop and "mommy, PLEASE make this go away!!!!!!!"---thanks for the support, helpful, J

[memom]

She says her brain wont let her stop and "mommy, PLEASE make this go away!!!!!!!"--

 

How heartbreaking. My daughter is 17 and can relate to that statement. We are almost done with week 2 of a 5.5 week taper dose. She to has Pandas, OCD (severe) with chorea (mild) being her primary symptoms. She is also on Augmentin 1000mg daily. The combination has helped already. No side effects yet. There have been some other side benefits. Her sinuses are clear as a bell (first time in a long time!) her breathing great, and her eczema is gone! Her thinking is clearer, focus better, OCD not gone but minimal repetitions and able to start using the tools she has learned with CBT over the past year. The shear volume of the OCD thoughts is much diminished. I haven't seen her this good in more years than I can count (probably 5 or 6). I am almost scared to start the taper as we have just started seeing the benefits (first 4-6 days seemed worse in some ways).

 

My daughter shared as she has been getting better that when she is in a bad Pandas time, she can't not do what her brain is telling her, no matter how crazy it seems. Sammy on saving sammy mentioned the same thing on the Matt Lauer interview. Let her know that it is because her brain is swollen and you are trying to fix it. That may help her to understand.

 

My daughter at 120lbs is on 50mg a day for 14d (30AM, 20PM), then will go to 20daily, then 10daily then 10 every other day. 5mg a day seems low to me to despite the size of your daughter.

 

Good luck. Hang in there.

 

Ellie

[Debbie1]

We are currently on our second round of steroids. Our first was in December 2008. The first time we did a very high dose for a week. The second time we used Dr. Latimer's protocol - a lower dose over 1 month. Both times we consulted with our pediatrician and an endocrinologist before starting the steroid. They both agreed that the dose was safe for the peroid of time we were using it. Dr. L. and our ped both said that if we needed to use the steroid every six months to control the automimmune response that it would be safe to do so. (Although I really hope we won't need to!)

 

We are happy we gave it a try - she got back to 100% the first time and we have seen significant improvement in our second round (we are not finished yet).

[EAMom]

Yikes! I agree with the others that the dose (5mg) sounds really too low. In this study, they used 2mg/kg/day for SC http://linkinghub.elsevier.com/retrieve/pi...887899405005436

 

We just did a short steroid burst...I believe it was 1mg/kg/day x 6 days. 25mg/day for a 54 pound child. But, many do higher doses (for longer times). I certainly wouldn't go any lower than 1mg/kg/day. For us, we were trying to nip an exacerbation in the bud while we were waiting for IVIG (which was already scheduled). For others, who might be trying to really get a bad situation under control...or..... if they don't know if they are going to do IVIG, then a longer course (like Kayanne) could be more appropriate.

 

IMO, I would not be concerned about long term side effects even at the dose/length of treatment that Kayanne used.

[Kayanne]

Well , we just started a month long predisone run at 5 mg a day

 

OTSMITH,

 

I just thought of something while writing another post, could you be mistaking 5mg for 5mls?

 

Because if you are giving 5mls, then depending on the concentration of the medication...you could be giving more mg. I have experience with 5mg/5ml concentration and a 5mg/ml concentration---at this concentration 5mls would really be 25mg--which seems right.

 

Yes, my dd6 was only 42 lbs when she was in an episode in June, but she had lost weight becasue she was refusing to eat, and at school, she couldn't focus at all to even eat her lunch...I felt like I was punched in the stomach when I unpacked her lunchbox two weeks ago, and there was one bite taken out of her sandwich...turns out she didn't like it...Whew...I think we all have those "OH NO" moments.

 

~Karen

[Kayanne]

We also did six weeks of prednisone...5mg daily was the taper dose for week four--it was supposed to be our last week, but we saw excellent results right at the very end, and Dr. L extented the 5mg daily (as per our request) for two more weeks--we wanted to be sure we were really hitting the brain inflammation hard.

 

Our daughter is 6ys old and was 42lbs at the time--she started at 20mg 2X/day for week one; 10mg 2X/day for week two; 5mg 2X/day for week three; 5mg/day for week three; and that dose was extended for two more weeks.

 

Her side effects were also minimal (some raging behavior the first week or two, but she was already fighting us a lot prior to the pred, and a couple of pimples)...and she was brought back to us completely. We are currently not seeing any PANDAS behaviors at all. She had a difficult time making decisions...it was like obsessive thoughts were "shutting her down". She seemed ADD at first, and right before the steroid she was more autistic like--no socializing, competely withdrew into herself, startled easily.

 

I'm just wondering why your dose is so low? Is it because you are concerned about side effects...or is you child very small?

 

What "gut issues" are you concerned about with prednisone? I know it can upset the stomach, but I didn't think it was a permanent thing...maybe I'm wrong.

 

It is definately not a drug to be administered without real consideration, but so are all the treatments for PANDAS.

 

Like DCmom, I too, would try it again If she has another episode. I think it is a first line treatment that can be tried on new cases/mild cases prior to jumping right into IVIG or Plasmapheresis/PEX.

 

Good luck!

 

~Karen

 

Sorry, I was going by memory, and I posted the wrong dosages that were prescribed for my daughter.

 

She was about 42-44lbs in June

 

Dr. Latimer's perscription was:

 

Day 1--20mg

Week 1--10mg 2X/day

Week 2--5mg 2X/day

Weeks 3 & 4--5mg daily

Weeks 5 & 6--5mg daily (this was the extended time)

[OTSMITH]

Ohhhhh Crap, do I feel dumb. okay she is taking 30 mls a day for 30 days weighing in at 35 lbs. Does that sound better?

 

She is complaining of stomach ache, our Dr. prescribed Zantac for that. She is ALWAYs starvin (that is coming from a kid that NEVER eats, so it is almost comical), and has becomes slightly more aggitated. (feel bad for her lil brother)

 

we are only on day and I look forward to this chapter being over. We are switching from shots to oral prophylatics, because the shots were soooo tramatic.

 

Thanks for helping set me straight, you ladies are wise---Jenn