Does anyone dose their child on steroids every third day, or a four day on three day off, instead of every other day or daily?

 

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We do a Friday & Sat. dose only.  Not exactly what you are saying but close.  It has worked well for us.

Melissa what is your dosage and how old is your son?  I am wondering because our son is on an every other day dosage and he has really bad side effects from this regimen.  Thanks so much.

We have been on 10 days on 10 days off for about 3.5 years. Side effects have been there but manageable.

We are in Netherlands and as far as I know 10 Day on/off is the standard protocol in NL.

Jordan is on 50ml's of  liquid prednisone (which is prednislone). I think, again THINK, the conversion is 120mgs.   He is 10 and weighs about 83lbs.  We started it when he was 2, Jordan was diagnosed very very early.  (at 9months)  Jordan's case is a little different (not that every boys isn't) but he also has an actual diagnosis that is from a Neuro psych exam that took 6months and almost 6hours a week of Extreme ADHD as well as cognitive impairs and some OCD tendencies. (they used another term for the cognitive impairs but I HATE the 'R' word)  So Jordan is also on Metadate, a slow release ADHD medication.  It is a pretty small dose, 20mgs a day. We have rough days sometimes on Sat, Sun, and a little on Mondays.  I feel that its more towards the end of the day when his ADHD meds are wearing off.  But because Jordan has been on it since he was 2 I just feel as though its part of his personality.  I have dealt with it for so long that it doesn't phase me.

His DR told us when he first started taking it the reason she does the weekend dose is that the side effects then will not be as bad at school. (hence behavioral issues)  I didn't look but where are you from and who do you see?  I would wonder though if you are having bad side effects if you did switch to the weekend dose if that could possibly make Sat and Sun worse for you and most importantly him?  No child wants to act the way this stuff can make them act, its just so hard.  I have never heard of the 10 days on and 10 days off like Tulika said above, but sounds interesting and I wonder if that would maybe be worth checking into.

We also do the Fri and Sat larger doses and it seems to work well. His vertical growth seems to be normal and has no behavioral issues with the drug. I would also take calcium since the steriod depletes the bone. Our son broke his leg last year and I wish we had asked for a bone scan and started him on the calcium sooner.

Please,let me know what to do if I decided to switch my son who is on 10 days on/off 30 mg to daily regimen but, with smaller dose?I mean in case of deterioration, and daily regimen will be the best choice,so is it easy to put him on 21 mg instead of 30 mg (as example) and how to do this?Is tapering this dose will be needed?note that 21mg /day is more than 30 mg 10 days on/off!

I wish my point is taken.

 

Please,answer is needed!

Moein - have you spoken to your neuromuscular provider about this?  what have they said?

Hi Kathi,

I didn't decide yet to switch him,but I am just asking to know if it is easy to switch or dose needs to be tapered.

In other words,I would like to know if 21 mg/day is considered to be > than 30 mg evey other 10 days so no needs to reduce the dose gradually!

Moein - Your neuromuscular provider will need to calculate how many mg/kg your son is receiving with each dose.  Based on that calculation, they will decide whether to taper the dose.  Is your decision to possibly change dosing schedules based on convenience?  Or is there a different reason? (I'm just curious)

You know,I am just worry to see deterioration,but I am fine with the 10 days on/off and I pray to God that this regime is going to be the right one mainly because  my son gained height and he is okay so far.

I am just worried about my son,therefore I like to give the worst case scenario and know what to do before this might happen (hopefully NO for all of our sons.

This is such a difficult decision.  Your son may maintain his physical function longer on daily steroids, but the side effects (being shorter) may be worse.  Likewise, he may lose some of his physical function on the 10 days on/10 days off, but he may have decreased side effects (gains in height).  For some boys, height is a really big issue; for others, it is not.  There is no perfect answer, unfortunately.  In the end, you will just have to do what is best for your son and your family.  I am happy to help in any way that i can.  It is just not easy.

Moein,

If I recall correctly when my son switched from 10 day on 10 day off to daily the doctor just gave us the mg dosage he was supposed to take and we just simply started giving him that daily. No tapering off required.

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