Wondering if there was anyone here whose son is taking growth hormone treatments and is older than ten? My son will be 14 next month is about 4ft. 5 and 78 lbs. He just had a stim test and is very low in growth hormone. We are in the process of getting the treatments authorized by our insurance company. I was hoping I could get some feedback from someone.

Thanks,
Janine

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Dr. Wong has several. She is seeing AMAZING results from the treatement. In addition to growth, the boy are all (to some degree) showing improvement (reversal?) of symptoms. One boy who has been non ambulatory for 1 year is now up and walking short distances with a walker!!!!
My son, age 6 is about the body size of a 3.5y/o. He will begin HGH next week. I am nervous, excited, etc

we are using a Pfizer product as they will fight the insurance and give you the hormone for free until approval. THey call this their 'bridge' program. Evidently this is the normal process at cincy. It sounds like you won't have any issues with ins. Good Luck!
Lori
Lori,

Thanks for the reply that is good to hear. I don't think we will have any issues with the insurance company as his results were very low but you never know
Hi Janine, My son Wyatt will be 11 yrs in August. He is on hgh prescribed by our pediatric endocronologist. We had FIVE 'reconsideration' letters, the last resulting in an agreement that there is a connection with Duchenne boys/growth issues and they agreed to cover the humatrope.
He has been on the hgh for almost a year now and he has bloodwork every three months to prove to the insurance company that his IGF1 level is still higher than it was in the beginning... He has maintained his level and has grown about 3 inches. Fight for this! I believe that it has been very good for my son.
He still is not as tall as his peers (nor his 20 month younger brother!), but it has helped so much emotionally for him to know that he has grown a bit. Wyatt is 4 ft. tall and weighs 69 lbs.
Hope this helps!
Joanne Keeley
Janine, I heard about the hgh being helpful from Dr. Wong as well- she was most interested in mobility improvement/stability and not height. It has just been a bonus for Wyatt...
Joanne
Joanne,

I know what you mean. His sister is five inches taller and she is three years younger. As he is almost 14 most of the other boys tower over him. It is just sort of depressing to have something else going on as well as the dmd. I did read that the most significant growth occurs in the first year of treatment. Does your son do good with getting or giving himself the shots?

Janine
Janine,
I just gave him his shot. He is good about it, but he will not give himself the shot. Luckily it is only a subcutaneous shot- I think he would give me a hard time about the vein!
It's really important not to skip doses for this therapy- He takes alot of different supplements and I would rather handle it anyway!
He takes his shot and his melatonin and the mix seems to make him sleepy- a bonus for me after a day of pushing his energy level UP! I stop all other supplements and energy enhancers by dinner time.
Joanne
Well we were denied. Reason, "the clinical information submitted for coverage of the above medication does not meet the treatment guidelines". Guess we'll be fighting this one.

Janine
Janine,
Have your Dr. check for the Pfizer product and use the bridge program that I talked about. We got the drug before our insurance approved the product. i can't believe you were denied with low growth hormone anyway!!
Lori

Janine said:
Well we were denied. Reason, "the clinical information submitted for coverage of the above medication does not meet the treatment guidelines". Guess we'll be fighting this one.

Janine
My understanding is that it was that particular type of growth hormone. Seems some insurance companies have particular ones they like and will approve. So they are not saying he does not need it. We are appealing and the manufacturer of the medication will give us a supply during the appeal process. The person at the doctors office says it is not all that unusual to get a deniel but she seemed to feel that it would be approved next time. If not we will go with a different growth hormone that my particular insurance company will most likely approve.

Janine

Janine
My son Nick is 9 and has been on growth hormone for 2 1/2 months--Pfizer bridge is providing the drug and working to get my insurance to cover it....the bridge program is amazing, yet my insurance has not received DMD-specific arguments for its use with our boys--I'd really like to see something come out of Dr. Rutter's and Cincy that Pfizer-Bridge and we as parents can present to our insurance companies that delineates the gains Lori speaks of in her post. This drug is incredibly expensive---Nick's best friend does not have Duchenne and has taken it for over a year because he was growth deficient, and the price of this treatment floored me even before I heard of Dr. Rutter! Whatever we can do to unite as a subset of the DMD community would be helpful.
My son Tim is 10 and has been on growth hormone for about a year. Recomended by Dr. Wong. This year he is not the shortest child in his class for the first time since preschool. We have also seen increased strength and the ability to do things he could not do last year. This summer he could go up and down the stairs of his friends house with no railings and no help. The increased strength and height along with weight loss has been great. He is so much more functional now and independent. We were lucky our insurance covered it but we did go with the manufacturer recommended by the insurance. This treatment does seem worth the fight.
Got approval. Just changed to another growth hormone and it went right through.

Janine

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