Hi all

My name is Gregoris Panayiotou and I am from Cyprus. I have an 11 years old son with DMD. He is on daily steroids (Deflazacort), since the age of 4.

Our main problem at this point is that he is short, only 1,27m instead of ~1,40m. He feels very sad about this and all his friends are teasing him.

I am trying to find a way to help him with this problem, except reducing or stopping steroids. He had blood test of growth hormones. His IGF-1 is normal but the GH is very low.

Have anyone of you faced this kind of problem? How did you resolved it? I am going to speak with our endocrinologist soon, but i need your experience on this.

Thanks

Greg

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Dear Janine

Thank you for the link to the discussion. I will study this!

Greg

Janine said:
Dr. Wong is putting many boys on growth hormone even when their levels are within the normal range. For her it is about Quality of Life and the side effects of HgH are very low. My son is in fact on HgH for steroid induced short stature. He was so short that our insurance is paying for it even though his levels were normal. In many boys, if not all, Dr. Wong is also seeing functional improvement..some very minor, some a good bit.

Hope this helps!
Dear Lori

Yes the information is very useful to me and thenk you!!

I am very seriously considering starting HgH to my son. As for the cost I have to consider how to cover it. Here in Cyprus we do not have any insurance that can cover such things, but our goverement may cover the cost, but I have to proove that this is something essential for my son.

By the way: What are the side effects of HgH? And what is the cost of such HgH treatement?

Thanks again for the information.

Greg

Lori Ware said:
Dr. Wong is putting many boys on growth hormone even when their levels are within the normal range. For her it is about Quality of Life and the side effects of HgH are very low. My son is in fact on HgH for steroid induced short stature. He was so short that our insurance is paying for it even though his levels were normal. In many boys, if not all, Dr. Wong is also seeing functional improvement..some very minor, some a good bit.

Hope this helps!
When other parents talk about their DMD boys being "short", how short are you talking? For example, my son Kyle who was diagnosed April 2008, just had a check up and I believe he was in the low 50th percentile. To ME that seems short given the fact that my husband is 6'0" and I am 5' 9". Our other two kids have always been in the 90th percentile or higher. On the flip side, my parents are only 5'5"-5'6"; so I don't really know if I would call him short at this point??? He is also on deflazacort and has been since July 2008.
Thanks, Donna
Donna,

My son has been on growth hormone treatment for about one year now. He is growth hormone deficient and was off the bottom of the growth chart. He will be 15 in a couple of weeks and is 4ft 8in tall.
My son, when starting HgH, was 6.5y/o. He was in the 3rd percentile in height and not growing at all. His bone age was 3.6y/o. So, basically he looked like a 3-4 year old. He is now 7.5 and has grown 3 inches (approximately), so is still a good head or so smaller than other boys his age.

Greg, I don't know if you are going to find anyone to tell you that HgH is "essential" for your son. For Dr. Wong at this point, it is a quality of life issue that is showing other great benefits, but they are all observational. She was wanting to do an 'official trail', but I am not sure where she is with that.

As for the cost, it is expensive! I am not sure of the exact cost, but someone in the $20,000 or more per year range (and I may be on the low side).

Good luck!
Lori
I consider my son "short". He's below the 3rd percentile for height (was closer to 25th before starting steroids). His twin brother (fraternal) is over 6" taller.

Donna said:
When other parents talk about their DMD boys being "short", how short are you talking? For example, my son Kyle who was diagnosed April 2008, just had a check up and I believe he was in the low 50th percentile. To ME that seems short given the fact that my husband is 6'0" and I am 5' 9". Our other two kids have always been in the 90th percentile or higher. On the flip side, my parents are only 5'5"-5'6"; so I don't really know if I would call him short at this point??? He is also on deflazacort and has been since July 2008.
Thanks, Donna
Dear Donna

Short means that the height curve of the boy is almost flat during the years. My son is below the 3rd percentile, outside the chart!! He is 11 years old and he has a height of 127cm (4' 2.5") so he is short for his age. I am tall and my wife is normal in height so my son would be around the 50th percentile if not taller by this age (4' 8").

As for Kyle it has been only a year or so that he started steroids. It is too soon to see any significant reduction in his height. But in the next few years his height curve will be flattened considerably. Please keep an eye to his height.

Greg

Donna said:
When other parents talk about their DMD boys being "short", how short are you talking? For example, my son Kyle who was diagnosed April 2008, just had a check up and I believe he was in the low 50th percentile. To ME that seems short given the fact that my husband is 6'0" and I am 5' 9". Our other two kids have always been in the 90th percentile or higher. On the flip side, my parents are only 5'5"-5'6"; so I don't really know if I would call him short at this point??? He is also on deflazacort and has been since July 2008.
Thanks, Donna
Dear All

Thank you for your answers to my questions :)

One think that remains is the side effects of the use of HgH. What are the side effects?

I heart about high blood presure. Is this true? Should my son have to do any analyses when we will start with HgH?

Greg
Greg,
I don't remember talking about high blood pressure. I remember the endocronologist telling me there is an increase risk of diabetes, but it is less than what you get with steroids. Additionally there is the benefit from HgH of weight loss, which reduces the risk of diabetes on that front. Other than that, I dont' recall any other being discussed.

Hope that helps some!
Lori

Gregoris Panayiotou said:
Dear All

Thank you for your answers to my questions :)

One think that remains is the side effects of the use of HgH. What are the side effects?

I heart about high blood presure. Is this true? Should my son have to do any analyses when we will start with HgH?

Greg
Donna,

A couple of studies showed that DMD boys are shorter and have lower bone density even w/o steroid treatment. Of course, after starting the steroids these problems become significantly worse. I do not recall if ALL boys in the studies were shorter and had low bone density, I think MOST were (unfortunately), compared with their non-DMD siblings.

Donna said:
When other parents talk about their DMD boys being "short", how short are you talking? For example, my son Kyle who was diagnosed April 2008, just had a check up and I believe he was in the low 50th percentile. To ME that seems short given the fact that my husband is 6'0" and I am 5' 9". Our other two kids have always been in the 90th percentile or higher. On the flip side, my parents are only 5'5"-5'6"; so I don't really know if I would call him short at this point??? He is also on deflazacort and has been since July 2008.
Thanks, Donna

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