I found that my son starts tending to walk with feet unparallel. Toes tend to in-side direction (He used to walk with feet straight or a little bit out-side direction as other people.).

I question if it is because of night splint.

Anybody can give me advise ?

Very much thanks.

Trinh

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Hi,Trinh

How is the going with your good boy?Hope he is doing well.My boy,Kamau is 8yrs old now.I am starting him on Prednisolone today.I must admit am really scared of taking this step because i dont know how he will respond to it.I am really praying the mood swings don't come to this lovable son of mine.And all the other side effects scare me to no end.But given the benefits,it is something that i have decided to do and take a step of faith.How has your boy been responding to it?How much was prescribed for him?My son will be taking 5mg two times daily.I would have loved to get him on Deflazacort but we dont have it in Kenya and getting it from Canada or the US is quite a process.Hope to read from you soonest.

Wainaina Muiruri,

Nairobi,Kenya

Hello, you need to go to the orthopaedist and use insoles, both at home and when you go out.

Dear Wainaina,

Thanks for sharing with me.

I understand your concern on Prednisolone, but we - parents have no other choice.

My son has taken Predni since end Feb. '11; started with low dose and now nearly 0.67mg/kg/day. Doctor recommended to take one time after breakfast. Heard that it's most effective. You can ask your doctor and other parents if they have same recommendation or not.

Initially, he got more active; scalf became softer (we do stretch too.) Though, my son shows some decline now. It's getting more difficult for him to do stairs.

Mood swing was not an issue for my son. But he is getting an appertite. Besides, I think tooth change takes longer time than normal (though he takes D3 too).

He increased 3.5kg in nearly 14 months with Predni ; a little over weight even though we carefully change to healthy food such as skimmed milk, more vegetable, more fish, less fat, less red meat, less salt,.... We actually concerned about weight gain and just decided to change to Deflazacort. Same as you, I cannot get Deflazacort in Vietnam. We order to Canadian pharmacy ; but they are afraid the medicine cannot reach our country due to some reason. So, we ask to deliver to USA where my brother lives then he sends to us. We expect to get medicine in a couple days. I pray it helps.
Hope you can find something from our experience.

Pray for your boy. 

Trinh
 wainaina muiruri said:

Hi,Trinh

How is the going with your good boy?Hope he is doing well.My boy,Kamau is 8yrs old now.I am starting him on Prednisolone today.I must admit am really scared of taking this step because i dont know how he will respond to it.I am really praying the mood swings don't come to this lovable son of mine.And all the other side effects scare me to no end.But given the benefits,it is something that i have decided to do and take a step of faith.How has your boy been responding to it?How much was prescribed for him?My son will be taking 5mg two times daily.I would have loved to get him on Deflazacort but we dont have it in Kenya and getting it from Canada or the US is quite a process.Hope to read from you soonest.

Wainaina Muiruri,

Nairobi,Kenya

 

Thanks Blazena.

Can you explain me more about insoles ?

Trinh
 
Blazena Kaderabkova said:

Hello, you need to go to the orthopaedist and use insoles, both at home and when you go out.

HI Trinh

Good to hear your boy is well.We got  a prescription of 5mg once daily and not 5mg x 2 as i mentioned in my earlier email.Since my boy is 24kg,does it mean that will be 0.20mg/kg?If so,will it then not mean this is a bit low to start with?What dose did your boy start with?And my son's doc is talking of giving him prednisolone for only ten days in a month.I do not know if this will have any therapeutic effect or not,so i guess i will need to discuss it further with him.Thanks and have a blessed day with your son.

Wainaina

Dear Wainaina,

My son started at around 0.58mg/kg/day. Doctor once tried one day on/one day off dose, but my son show clear decline. So we return to daily dose. There are 1 day on / 1 day off ; 10 days on / 10 days off ; high dose at week-end, daily dose. It depends on each boy and doctor's point of view also to apply which one. Personally, I think 0.2mg/kg/day is low. But you should follow-up how your boy re-act to the steroid.

Trinh
 
wainaina muiruri said:

HI Trinh

Good to hear your boy is well.We got  a prescription of 5mg once daily and not 5mg x 2 as i mentioned in my earlier email.Since my boy is 24kg,does it mean that will be 0.20mg/kg?If so,will it then not mean this is a bit low to start with?What dose did your boy start with?And my son's doc is talking of giving him prednisolone for only ten days in a month.I do not know if this will have any therapeutic effect or not,so i guess i will need to discuss it further with him.Thanks and have a blessed day with your son.

Wainaina

Dear Trinh

I also think 0.20mg is low,i think the doc too is worried about the side-effects.I will monitor him for the whole month and see how his system reacts,then based on that i will suggest we raise the dose.

My son is getting his wheel chair this week as he can no longer walk due to weak muscles and his tendons have shortened despite the stretches;but we are still continuing with the stretches.I will need to also get our doc to prescribe Deflazacort and see if i can get it from Canada too.I understand its side effects are a bit milder compared to prednisolone.It is a terrifying experience having to see our kids go thro this,but we must have hope.Thanks.

Regards

Wainaina

Dear Wainaina,

I am so sorry that your boy can no longer walk. Then I believe that his dose is too low. Need to talk with your doctor.

Pray for yr son.

Trinh

Dear Trinh

Thank you for the info and prayers.I will talk to my doc and see if he can go higher.Hope he will agree.Thanks again and have a great week.

Wainaina

The recommended dose in the Lancet was 0.75mg/kg for prednisolone(as far as I am aware?).

Our son is on 15mg daily doses of Deflazacort. We get it through the United Kingdom, and is a very easy process.

Braedan is 6 years old, and has been on this for just over a year and tolerates it very well. No signs of anything out of the ordinary, and his energy is great.  He is not the typical kid though. He is very strong, but tight.  Constant stretching is on our regiment daily.  We also swim twice a week, which is really good for him too.

Dear Tammy,

We order through Canadian pharmacy. It just arrived yesterday. We found it was made in India not Canada. Which origin do you get through UK ?

Tks,

Trinh
 
Tammy Henegar said:

Our son is on 15mg daily doses of Deflazacort. We get it through the United Kingdom, and is a very easy process.

Braedan is 6 years old, and has been on this for just over a year and tolerates it very well. No signs of anything out of the ordinary, and his energy is great.  He is not the typical kid though. He is very strong, but tight.  Constant stretching is on our regiment daily.  We also swim twice a week, which is really good for him too.

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