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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I switched our son from daily deflazacort to ADT ( Alternate Day Therapy) in May 2009 to see if this would give him a growth spurt over the summer. I was prepared knowing he would become weaker on the every other day regimen vs. taking his steroid daily. I was fine with this since I knew it meant he wouldn't have to keep up with his peers over the summer holiday. I was simply trying to give his glands, kidneys, and liver a break while hoping for a growth spurt in the process. My goal was to return him to the daily dosing regimen a week before school resumes in August.

The outcome, he's only gained 2 cm since January so my goal of him gaining in height was not met.

You may want to have a look at the growth rates of those boys taking weekend or 12 day on 12 day off steroid regimens.

When last checked, our son's gh level was fine. So, I'm a bit worried over what giving gh injections to my son would do to him since his levels are within normal limits. I hope Dr. Wong plans on publishing something related to this informal trial so that then parents can make an informed decision and other neurologist will then be able to back up her recommendations. It sounds like a promising treatment and we all ( parents) have been waiting with baited breath for years now for something promising to show up. I just don't want to keep adding thngs to our son's routine not knowing how all of these supplements and medications are reacting with one another. It has me worried at times.
One other thing I would like to see is how the GH treatment impacts the heart. We all know that our boys will have heart problems sooner or later...has Dr. Wong followed the boys on GH long term? Does she intend to publish the data? I think that it is very important to look at that very carefully before the treatment is recommended to a boy with normal GH levels.

Tina said:
So, I'm a bit worried over what giving gh injections to my son would do to him since his levels are within normal limits. I hope Dr. Wong plans on publishing something related to this informal trial so that then parents can make an informed decision and other neurologist will then be able to back up her recommendations. It sounds like a promising treatment and we all ( parents) have been waiting with baited breath for years now for something promising to show up. I just don't want to keep adding thngs to our son's routine not knowing how all of these supplements and medications are reacting with one another. It has me worried at times.
What have you read on HGH affects on the heart? Interestingly our 17 yo who was on HGH for a little over 1 yr ejection fraction on the echo went from 50 (still normal range) to 45 in the past 2 1/2 years.

Ofelia Marin said:
One other thing I would like to see is how the GH treatment impacts the heart. We all know that our boys will have heart problems sooner or later...has Dr. Wong followed the boys on GH long term? Does she intend to publish the data? I think that it is very important to look at that very carefully before the treatment is recommended to a boy with normal GH levels.

Tina said:
So, I'm a bit worried over what giving gh injections to my son would do to him since his levels are within normal limits. I hope Dr. Wong plans on publishing something related to this informal trial so that then parents can make an informed decision and other neurologist will then be able to back up her recommendations. It sounds like a promising treatment and we all ( parents) have been waiting with baited breath for years now for something promising to show up. I just don't want to keep adding thngs to our son's routine not knowing how all of these supplements and medications are reacting with one another. It has me worried at times.
Does anyone have any names of their HgH medication(s) so that we parents who are looking into this can investigate further? I would really like to look into this only because Joshua's predicted outcome will be 5'2" as a maximum height. He can blame it on me as I am short... but he looks half his age. Thank you to anyone who can help!

Naomi
Seph is on Genotropin

Joshua's mom said:
Does anyone have any names of their HgH medication(s) so that we parents who are looking into this can investigate further? I would really like to look into this only because Joshua's predicted outcome will be 5'2" as a maximum height. He can blame it on me as I am short... but he looks half his age. Thank you to anyone who can help!

Naomi
There are several references for "GH and the heart", you could just google it. You can find quotes like "cardiac complications of GH in children without cardiac disease are rare. Continued observation to ensure that GH therapy has no long-term effects on cardiac anatomy or function in children is necessary.". My question is, how do they affect the heart of DMD boys with normal GH levels.

I would like to see some data published; I assume Dr. Wong has some data since she is recommending GH treatment even to boys with normal levels.

Cheri Gunvalson said:
What have you read on HGH affects on the heart? Interestingly our 17 yo who was on HGH for a little over 1 yr ejection fraction on the echo went from 50 (still normal range) to 45 in the past 2 1/2 years.

Ofelia Marin said:
One other thing I would like to see is how the GH treatment impacts the heart. We all know that our boys will have heart problems sooner or later...has Dr. Wong followed the boys on GH long term? Does she intend to publish the data? I think that it is very important to look at that very carefully before the treatment is recommended to a boy with normal GH levels.

Tina said:
So, I'm a bit worried over what giving gh injections to my son would do to him since his levels are within normal limits. I hope Dr. Wong plans on publishing something related to this informal trial so that then parents can make an informed decision and other neurologist will then be able to back up her recommendations. It sounds like a promising treatment and we all ( parents) have been waiting with baited breath for years now for something promising to show up. I just don't want to keep adding thngs to our son's routine not knowing how all of these supplements and medications are reacting with one another. It has me worried at times.
Xavier was always at 75-90% for Ht from birth until we started him on Deflazacort at age 4.5, then he absolutely came to a halt. He then fell off the chart since then. We did the 6 hour test for GH levels in December and he responded to 1 medication minimally (not significantly) and did not respond in any way to the other. So for him, we are pretty sure he never had a GH problem prior to the steroids, but our endocrineologist felt it was important to start the GH for bone strength. We do not go to Dr. Wong, so we are not part of her studies. We started on Nutropin and due to a change in insurance we just switched to Norditropin. We have seen good results so far, he is very happy to be growing taller than his 4 year old sister (who is following the same growth pattern he was on and is 90%) and have seen no decrease in strength with his growth at this point
Is there really a difference between any of the medications? I went to www.drugs.com and looked them all up to find all of them with the not only the same symptoms, but the same generic name as well. Have any of you found a difference between one or another with any of the kids though?

Naomi
For us our Endocrinologist preferred to either use Nutropin or Norditropin, we started on Nutropin at his choice, then 3 months into the treatment it went non-preferred on our insurance plan and our co-pay went from $50 to $125 for a 90 day supply which we were ok with considering how much the stuff costs to begin with, but our Dr. said he really didn't care which one we used and knew that the $75 in savings could be used elsewhere so we switched to Norditropin. I'm not sure why he prefers those 2 over the others. We have not see a difference, but we have only been on the norditropin a short time. Xavier does say the norditropin does not hurt as much as the Nutropin going in, which we had been told by another family that had made the same switch.

Joshua's mom said:
Is there really a difference between any of the medications? I went to www.drugs.com and looked them all up to find all of them with the not only the same symptoms, but the same generic name as well. Have any of you found a difference between one or another with any of the kids though?

Naomi
Indeed very helpful information for me all of this discussion!! Thank you everyone who share their experiences with GH shots.

My son is going to have the 6 hours test in a few weeks and we may also start the injections with GH. Is GH has any side effects on the heart? What is your experience with this issue?

Thanks again

Greg
Hi Jennifer,

How much did your son grow since starting GH? Is he on the chart now? My son is also 75-90% at this point (22 mth old), I am sure that his levels are normal. How can you get the insurance company to approve it if your son's levels are normal? Just thinking for the future, he is not on steroids at this point.

Thanks,
Ofelia

Jennifer Shumsky said:
For us our Endocrinologist preferred to either use Nutropin or Norditropin, we started on Nutropin at his choice, then 3 months into the treatment it went non-preferred on our insurance plan and our co-pay went from $50 to $125 for a 90 day supply which we were ok with considering how much the stuff costs to begin with, but our Dr. said he really didn't care which one we used and knew that the $75 in savings could be used elsewhere so we switched to Norditropin. I'm not sure why he prefers those 2 over the others. We have not see a difference, but we have only been on the norditropin a short time. Xavier does say the norditropin does not hurt as much as the Nutropin going in, which we had been told by another family that had made the same switch.

Joshua's mom said:
Is there really a difference between any of the medications? I went to www.drugs.com and looked them all up to find all of them with the not only the same symptoms, but the same generic name as well. Have any of you found a difference between one or another with any of the kids though?

Naomi
What is the average height of a teenage boy that has been on Deflazacort for a number of years who hasn't taken growth hormone? If Kelvin doesn't stay too short, I'm looking at the health part and I guess I have not worried yet at all about his height, even though, he is clearly one of the shortest boys in his class. I'm sure he'll worry about it, but I am hopeful that he'll remain healthier longer. I have also read many items in the past that say that the shorter a boy is, the better off they are for walking etc. due to their stature. I read that there are a few children with dwarfism with DMD who did well longer, since their muscles never elongated as much, so they had better balance, etc. Michelle

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