Replies to This Discussion

Permalink Reply by Gregoris Panayiotou on July 22, 2009 at 9:56am

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. Is this an indication of starting GH? I am confused!

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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Permalink Reply by Cheri Gunvalson on July 22, 2009 at 6:45pm

Our son Jacob who will be 18 in Oct has been on steroids for over 11yrs. He is very happy with the results of GH and testorerone cream. Prior to treatment he looked like a 11 yo. Now he looks like a 15-16 yo. He grew several inches and lost the cushionoid side effects, ie the puffy face etc. He walked until he was 15 1/2. When we saw Dr Wong and her team last Aug he had a long conversation with Dr Linda Cripe about how much more important to him to look age appropriate, even more important than the ability to walk. Good Luck! Cheri

Rhiannon Hubbard said:

How did they test the GH level in his blood? Was it a simple blood test or did he have a GH stim test done? (The stim test is done usually at the hospital over the course of several hours where they give different medications to stimulate GH production and then test the GH levels many times). The level of growth hormone varies constantly and just 1 blood draw isn't an accurate figure of the growth hormone levels so the stim test is usually required to see if a child is indeed GH deficient.

My son has growth hormone deficiency in addition to DMD (his growth was a major issue all his life, long before we realized he had a muscle problem) and his IGF-1 was always low until we started on the growth hormone treatment, I'm not sure if that is ALWAYS the case, but I believe IGF-1 tends to be low in kids who are growth hormone deficient.

Good luck getting all of this figured out for your son. I know some parents are looking to growth hormone treatment without a for sure deficiency when small stature starts becoming a major issue for the child.

-Rhiannon

Gregoris Panayiotou said:

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. Is this an indication of starting GH? I am confused!

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

• ▶ Reply

Permalink Reply by Gregoris Panayiotou on July 23, 2009 at 1:03am

Dear Rhiannon

Thank you for your answer.

The test for the time being was a simple blood test of GH. We are going to have the stim test soon and take our decision on what to do.

ohh one questions: Any side effects of HgH? What is reccomended follow up for boys taking HgH?

Greg

Thanks again

Rhiannon Hubbard said:

How did they test the GH level in his blood? Was it a simple blood test or did he have a GH stim test done? (The stim test is done usually at the hospital over the course of several hours where they give different medications to stimulate GH production and then test the GH levels many times). The level of growth hormone varies constantly and just 1 blood draw isn't an accurate figure of the growth hormone levels so the stim test is usually required to see if a child is indeed GH deficient.

My son has growth hormone deficiency in addition to DMD (his growth was a major issue all his life, long before we realized he had a muscle problem) and his IGF-1 was always low until we started on the growth hormone treatment, I'm not sure if that is ALWAYS the case, but I believe IGF-1 tends to be low in kids who are growth hormone deficient.

Good luck getting all of this figured out for your son. I know some parents are looking to growth hormone treatment without a for sure deficiency when small stature starts becoming a major issue for the child.

-Rhiannon

Gregoris Panayiotou said:

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. Is this an indication of starting GH? I am confused!

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

• ▶ Reply

Permalink Reply by Gregoris Panayiotou on July 23, 2009 at 1:04am

Dear Cheri

Any side effects of the use of HgH? What test should be done when taking HgH?

Greg

Cheri Gunvalson said:

Our son Jacob who will be 18 in Oct has been on steroids for over 11yrs. He is very happy with the results of GH and testorerone cream. Prior to treatment he looked like a 11 yo. Now he looks like a 15-16 yo. He grew several inches and lost the cushionoid side effects, ie the puffy face etc. He walked until he was 15 1/2. When we saw Dr Wong and her team last Aug he had a long conversation with Dr Linda Cripe about how much more important to him to look age appropriate, even more important than the ability to walk. Good Luck! Cheri

Rhiannon Hubbard said:

How did they test the GH level in his blood? Was it a simple blood test or did he have a GH stim test done? (The stim test is done usually at the hospital over the course of several hours where they give different medications to stimulate GH production and then test the GH levels many times). The level of growth hormone varies constantly and just 1 blood draw isn't an accurate figure of the growth hormone levels so the stim test is usually required to see if a child is indeed GH deficient.

My son has growth hormone deficiency in addition to DMD (his growth was a major issue all his life, long before we realized he had a muscle problem) and his IGF-1 was always low until we started on the growth hormone treatment, I'm not sure if that is ALWAYS the case, but I believe IGF-1 tends to be low in kids who are growth hormone deficient.

Good luck getting all of this figured out for your son. I know some parents are looking to growth hormone treatment without a for sure deficiency when small stature starts becoming a major issue for the child.

-Rhiannon

Gregoris Panayiotou said:

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. Is this an indication of starting GH? I am confused!

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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Permalink Reply by maxine Strydom on July 23, 2009 at 3:41am

Hi Cheri, please could you let me know, does the testosterone, or the GH in your opinion reduce the fatty look our boys seem to have. My son is 17 and still looks like he is about 13 and he is really not happy, we tested his testosterone which is very low, so he is now on testoserone injections but not on growth hormone. thanks so much Maxine

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Permalink Reply by Janine on July 23, 2009 at 9:21am

Greg,

We have seen no adverse side effect from growth hormone treatment.

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Permalink Reply by Cheri Gunvalson on July 23, 2009 at 10:07am

I am not sure which decreases the cushionoid sx as he did both. The testosterone also helps his bones and mature his private area which was important for him.

He see's Dr Wong and Dr Rutter (endocrinologist) I believe they did a GH stim test and other testing. His GH was not that low but he wanted to grow taller and look older so we tried it.

The only side effect was with increased growth his scoliosis curve increased.

maxine Strydom said:

Hi Cheri, please could you let me know, does the testosterone, or the GH in your opinion reduce the fatty look our boys seem to have. My son is 17 and still looks like he is about 13 and he is really not happy, we tested his testosterone which is very low, so he is now on testoserone injections but not on growth hormone. thanks so much Maxine

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Permalink Reply by Kim Maddux on July 31, 2009 at 5:34pm

Hi -

My son is going to see Dr. Wong next week. Last year she told my husband that we would probably start growth hormones after this visit. I have read every word on this topic and boy was it helpful and informative. I read all about the insurance issues. I wonder if our insurance will cover it, Anthem. We are in Northern CA. If anyone knows, please let me know. A few questions I do have...minor details. Is it a daily injection? In arm, leg or where. Is it like giving an allergy shot? I used to give those to myself years ago? Do we get the GH at our local pharmacy or is it ordered and shipped to us? Just curious...I know I would find out eventually but just thought I would ask. My son has a HUGE fear of shots, so we have to work through this fear with him.

Thanks again for all in the info on the topic. It is amazing. I can't imagine what we would do without it.

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Permalink Reply by Jessica on August 4, 2009 at 5:16pm

I am sorry to sound naive but is growth hormone much different then steriods? If so what kind of side effects. My son is young, only 2 and a half. He is predicted to have beckers through his genetic test.

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Permalink Reply by Gregoris Panayiotou on November 30, 2009 at 7:09am

Dear Rhiannon

At last George had the 6 hour GH test and the GH levels seem normal. But we want to try the growth hormone anyway. Our Endocrinologist is skeptical about the dosage, since he does not have any previous experience with boys with DMD.

Did Carter's HG levels normal too when you started GH?

Our doctor asked for the possibility to talk to a doctor that he/she has experience with GH with boys with DMD. May I ask who is your doctor and if I can have his/her e-mail or a phone number to contact him/her? At which medical center or hospital is he/she working? I would be very greatful to have these info if possible. My e-mail is greg@logosnet.cy.net so you may send these info to my personal e-mail if you like.

Thanking you again

Gregoris Panayiotou

Rhiannon Hubbard said:

No problem Greg,

We spent a few years looking into GH for Carter before we started. There really are very few side effects of GH. For Carter many of them were positive; it increased his appetite (he was always underweight and at risk of getting a g-tube), his coordination, and of course his linear growth as well. Our endocrinologist monitors his IGF-1 level to make sure it doesn't get too high (some feel high IGF-1 levels can cause tumors, but only if they're very high for an extended period of time) we do blood work to test his IGF-1, IGFBP3, thyroid, testosterone, and metabolic levels every 4 months. One thing Dr. Wong mentioned when we saw her in May is that we will need to be extra dilligent about stretching since he will have 'quicker' growth and we'll need his tendons to keep up with it. I know Dr. Wong has been seeing a lot of boys lose the puffy face look that some get from steroids. Our endocrinologist said the most common 'side effect' they see is actually infection at the injection site due to parents not following the right procedure when doing the shots. This of course is easily avoidable and we've never had any problems at all with the injections.

Carter was WAY below the growth chart when we started treatment and hit the 3rd% after just 6 months. Instead of flat-lining and getting further and further from the curve his chart actually went straight up. He's now been maintaining at the 25th% and our goal is to keep him at that curve and reach an adult height of 5' 7 1/2". Without treatment they were predicting an adult height of around 4' 10".

Gregoris Panayiotou said:

Dear Rhiannon

Thank you for your answer.

The test for the time being was a simple blood test of GH. We are going to have the stim test soon and take our decision on what to do.

ohh one questions: Any side effects of HgH? What is reccomended follow up for boys taking HgH?

Greg

Thanks again

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Permalink Reply by Gregoris Panayiotou on November 30, 2009 at 7:29am

Dear Lori

We have been discussing the GH treatement with my son's endocrinologist for some months now. He is still skeptical on starting the GH treatement. My son is 11 yrs old with DMD taking daily deflazacort. He is very short bt his GH are normal (after the 6 hour test). So my doctor need to talk to some other doctors that have much more experience on GH treatement on boys with DMD taking steroids.

So can our doctor contact Dr. Wong? At which medical center does Dr. Wong work? It would be very helpful to have our doctor (Dr. Skordis) contact Dr. Wong.

Thanking you in advance

Gregoris Panayiotou
Cyprus


Lori Ware said:

For a quicker response you may want to email her nurse Andrea Mynatt-Norman Andrea.Mynatt-Norman@cchmc.org, Andrea will get you whatever info you need from Dr. Wong.

Lori

BeritSofie said:

Hi everyone

Can anyone please give me Dr. Wong's email adress ? Have been reading this thread and find it very interesting for our boy, 9 years old. Hasn't grown much the last three years, and we also have a weight issue (steroids?)

Berit

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Permalink Reply by Gregoris Panayiotou on November 30, 2009 at 7:33am

Dear All

Where can we find Dr. Wong? How can we contact her? Our doctor here in Cyprus needs to contact some other doctors that have much more experience on boys taking steroids and are under GH treatement, before he will start the GH treatement to my son.

Can anyone help please?

Regards

Gregoris Panayiotou
Cyprus

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