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Permalink Reply by Samantha Dearing on July 4, 2008 at 3:48pm

Alot of other people can fill you in on test to ask for, but as for the insulin, I would ask for the A1C...wait is that it? UGH!! I think that is the name, but someone else here will probably know!! Anyway, it will show the your sons average blood sugars for a 3 month time period!!

--Samantha

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Permalink Reply by Lori Ware on July 4, 2008 at 6:08pm

I agree, the big glucose test is GROSS and not necessary if the 3 mth test is on target. i did hear recently find out that steroids (not necessarily prednisone) can increase the chance of diabetes. I would check thyroid for sure as well.

Lori

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Permalink Reply by Jill Keenan on July 5, 2008 at 12:03am

Samantha--you are right-it is the hemoglobin A1c. While there are no guidelines to use A1c as a screening tool, it gives a physician a good idea that someone is diabetic if the value is elevated. Right now, it is used as a standard tool to determine blood sugar control in patients known to have diabetes."To explain what an A1c is, think in simple terms. Sugar sticks, and when it's around for a long time, it's harder to get it off. In the body, sugar sticks too, particularly to proteins. The red blood cells that circulate in the body live for about 3 months before they die off. When sugar sticks to these cells, it gives us an idea of how much sugar is around for the preceding 3 months. In most labs, the normal range is 4-5.9 %. In poorly controlled diabetes, its 8.0% or above, and in well controlled patients it's less than 7.0%. The benefits of measuring A1c is that is gives a more reasonable view of what's happening over the course of time (3 months), and the value does not bounce as much as finger stick blood sugar measurements."
I am sure this is more info. than you needed to know about this test, Patty, but figured I would quote you the info. anyway, so you can at least know what the normal ranges are when you get results, which I am sure the dr. would tell you anyway=) My son is only four and we are just getting ready to start steroids and this issue has me worried as my husband has Type 1 diabetes. (Not sure what it is with our family and "spontaneous" diseases--no family history of diabetes of any kind and no family history of dmd and I am not a carrier. My husband had a virus which "attacked" his pancreas when hes was 24--virtually shutting down insulin production.) I just think we all have enough to deal with, without adding diabetes to the picture!! Sorry I can't help with what other ?'s to ask=( Good luck and hope that his #'s come back in the normal range.

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Permalink Reply by Christine Piacentino on July 6, 2008 at 7:02am

Hi Patty,

My son has developed insulin resistance. We discovered it when we went to see the Dr. Rutter in Cincinnatti. When we went to to Cincinnatti, my son was 13. He had been on deflazacort for a long time at a daily dose. Apparently, kids on long term steriod use do develop insulin resistance. He was prescribed Metformin. He takes his medication twice a day in pill form. You need to build up to the dosage over a few weeks.

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Permalink Reply by Christine Piacentino on July 8, 2008 at 6:43am

Hi Patty,

We had a full range of tests performed. There are many issues that need to be followed by an endocrinologist. My son is also short in stature and has developed spine compression fractures due to steriods. While we were in Cincinnati a Thyriod Test , a Renal Panel , a liver panel, IFG-1, IFG-b3, fasting glucose, fasting insulin, HbA1c, a growth homone skin test and a 25 Hydroxy Vitamin D level. Bear in mind my son is now 14 and has been taking deflazacort since 2001. Because of the nature of the care we were getting I wanted to make sure that my son was seen by an encrocrinologist that works with Duchenne patients.

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Permalink Reply by Christine Piacentino on July 15, 2008 at 9:04pm

Glad I could help. Yes, please let me know how it goes.

Patty Sherman said:

Thank you very much. We have an appointment tomorrow morning & I am well-armed with my information ;-). I'll let you all know how it goes.

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Permalink Reply by Char Burke on July 20, 2009 at 1:38am

Patty - you may also want to check out a drug called metiformin - it is for weight control - an RX. Char Burke

Christine P. said:

Glad I could help. Yes, please let me know how it goes.

Patty Sherman said:

Thank you very much. We have an appointment tomorrow morning & I am well-armed with my information ;-). I'll let you all know how it goes.

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Permalink Reply by Gregoris Panayiotou on July 22, 2009 at 8:04am

Hi all

My name is Gregoris Panayiotou and I am from Cyprus. I have an 11 years old son with DMD. He is on Deflazacort from the age of 4 (six months after his disgnosis).

My son still walking, he is in a very good condition. We do have a problem with his height though. He is just 1,27 (age 11). He feels very bad about this. Have anyone of you tried Growth Hormone? If yes, then what is the outcome? I will discuss this issue with our endocrinologist soon, so I would like to know if someone had an experience with GH. His IGF levels are normal, but GH is very level is very low. Is this has to do with Insuline resistance?

Greg

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Permalink Reply by Donna Cicardo on June 21, 2012 at 5:40pm

Greg did you ever get answers to these questions.  you post was in 2009, its now 2012, how is he doing after 3 years.  I ask because my son is now 11, weights 130 lbs, on 30 mg prednisone and the weight gain just keeps creeping up.  we will see dr. wong in Cincinnati and i am hoping she will be able to help....any suggestions? thanks

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 Deflazacort from the age of 4 (six months after his disgnosis).

My son still walking, he is in a very good condition. We do have a problem with his height though. He is just 1,27 (age 11). He feels very bad about this. Have anyone of you tried Growth Hormone? If yes, then what is the outcome? I will discuss this issue with our endocrinologist soon, so I would like to know if someone had an experience with GH. His IGF levels are normal, but GH is very level is very low. Is this has to do with Insuline resistance?

Greg

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Permalink Reply by Claire Diemler on June 22, 2012 at 9:13pm

Donna, have you seen Dr. Wong before?  She typically prescribes deflazacort which seems to help with the weight issue.

Donna Cicardo said:

Greg did you ever get answers to these questions.  you post was in 2009, its now 2012, how is he doing after 3 years.  I ask because my son is now 11, weights 130 lbs, on 30 mg prednisone and the weight gain just keeps creeping up.  we will see dr. wong in Cincinnati and i am hoping she will be able to help....any suggestions? thanks

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 Deflazacort from the age of 4 (six months after his disgnosis).

My son still walking, he is in a very good condition. We do have a problem with his height though. He is just 1,27 (age 11). He feels very bad about this. Have anyone of you tried Growth Hormone? If yes, then what is the outcome? I will discuss this issue with our endocrinologist soon, so I would like to know if someone had an experience with GH. His IGF levels are normal, but GH is very level is very low. Is this has to do with Insuline resistance?

Greg

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Permalink Reply by Donna Cicardo on August 30, 2012 at 6:10pm

Greg, we finally saw Dr. wong, we are insulin resistant.  starting metformin swithcing to deflazacort.  I hope and pray it works.  Thanks.

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