My son is 12 and hasn't grown in 3 years.....He is on Deflazacort and his last labs showed he isn't making growth hormone. His docs want to start growth hormone injections and I am nervous about the side effects. I read that there can be cerebral swelling and hip dislocation. I also heard it can make them fall more and they are harder to lift and take care of after they grow so quickly. My son has learning disabilities and doesnt notice or mind that he is shorter than his peers so I wondered what would be the benefit of these injections? It seems like all side effects and not much good. Is anyone's else's son on growth hormone injections and have you had any trouble with it? Did it make it harder to help take care of them at home also?
Yep, your likely correct Amit.
The multidisciplinary Goblins at Cinci., have a good handle on HGH therapy. After 4 days of intensive testing, you get to sit down with folks who will allay your worst fears and guide you onto a therapy regimen. However, implicit is the "continuing to be seen" at the facility where they will monitor your son.
Oh, an if you cannot afford the $4,700/month medication, then they initially will set you up with a third party lender who will cover the costs. In exchange for covering the costs, you have to agree to give up your "rights" to medical privacy and they get to use any and all medical data any way they see fit. Read the HGH medical expenses contract they try to make you sign before you leave the hospital...
It took 5 months, but we eventually got our insurance to cover the costs, with no release to "unspecified data recipients". So, how might one conduct a drug study on the effects of Drug X on DMD patients, and still avoid all of those noxious FDA rules,regulations and consuming paperwork associated with a clinical trial??
I guess I have a general question to ask.. In the USA, how frequently was Human Growth Hormone Therapy given to DMD kids prior to 2006 and with what efficacy? I cannot find it in any medical literature searches and I did search exhaustively for almost 8 months after we stopped giving it to our son.
Oops Keith , did not mean to go tangential there...
I think you got me wong. I not a believer in therapeutic nihilism. Perhaps, took me out of context on the ethical nature of the HGH in DMD patients. As every family has to make its own decisions on treatment for their juvenile children, it's incumbent upon the physician(s) to not "overtreat" a condition.
At best HGH has visibly temporary benefits; a competent endocrinologists who choose to increase the DMD patient's body size, is perhaps, less than candid with patients and parents about pulmonary, cardiac and immunologic,etc., bylines that accompany the disease. Complications and medical conditions attributed to DMD in aforementioned systems, yep, absolutely, treat those as aggressively as possible.
My son has a disease (DMD) that with 100% assurance, will soon enough, terminate his life via compromised muscle system complications. A physician who might "frequently / regularly" prescribe and encourage (yep - encourage) an over-treatment of the disease is to my way of thinking, unethical. But I suppose to have an extra year with my child on a ventilator, getting 24x7 medical care, daily watching his quality of life diminish, dragging his poor body and spirit through the final death rattle of a personage divested of their humanity.
Yeah, that might be acceptable.
So,yeah sure, I guess your right HGH, it's hardly unethical, just saying.
I believe the trial showed no improvement in heart or muscle function, however the lead investigator did say longer trials may be needed to see benefits in those areas.
Thanks Michael. I am generally in agreement with you. Our concern is primarily due to my son's height. If the side effect of HGH is faster decline due to muscles not keeping up with height gain then that would be unacceptable to us. We also wonder if there was any benefit in bone strength (better or stable dexa numbers) as a result of HGH for people who took it.
Would appreciate more comments from other parents on this.
Hi Amit, the last dexascan for Jon was in 2009 and it looked good. As I recall, the doctor also did tests for Vitamin D & calcium and we cut down on the Vitamin D to 800 / day. If there were any benefits for bones they were masked by already daily regimen of calcium, V-D , etc. But we have had Jon on a multiple vitamin and supplement since around 1999. Poor kid gets stuffed with about a 10 pills every day, morning and night, and it doesn't even improve his taste in music or grades in college.
After all these years, I quit being angry, frustrated, and looking for that silver bullet cure. If Ataluren had come along when he was 4 or 5, maybe today he would be playing ball games, but it didn't start until he was 14 in the pre-pre-drug trial 90 days long in 2006, then shut down until 2009... too much history.
Anyway, kids are a mixed blessing; like new cars, nice to get one, but expensive to maintain...
My son will be 8 this month, he has DMD. He was diagnosed with a growth hormone deficiency- keep in mind he had very very very low readings of this growth hormone (this was prior to the start of deflazacort). He faithfully took the shot for 2 years due to this deficiency. This was not about height. He does not care about that. He took the shot like a champ, not a single issue. it is not like a shot at the doctors it is pretty much like the insulin pen. when we went to learn to do it I asked what it felt like and I was allowed to try it on my self- no HGH injected. haha I am so glad I asked. we never noticed any side effects. the worst part is waiting fro the insurance process, finding the pharmacy, the co-pay------yuck. My son has 2 insurance and it just took months to set up.
we were told that in the past (more than 20 years ago)) some patients with DMD actually had a positive response to the shot- a bit more strength and there were some studies advocating for further testing. Then more recent studies disagree.
Without going on I will fast forward. We have in the last 18 months tried a period of him on and then off the shot to see if there was a benefit. we were advised to continue the shot (he was gaining a lot of weight when off the shot and not growing as much), but have decided to stop it. we are also in the process of weaning my son off of deflazacort as well. I am fairly certain this is not always looked at as the best decision within this community, but everybody reacts differently and my son is just not benefiting from things as other boys have. Of course there are more factors involved as well. right now we are sticking with the less is more approach.
For those out there whose son has been on the HGH already, how many inches did they grow over what period of time?
For everyone that has a son on HGH, how much did they grow and over what period of time?