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Growth Hormone Treatment - pease share
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amother




Seashell
 

Post Thu, Oct 14 2021, 11:05 pm
amother [ OP ] wrote:
Because my son talks about everything. And if he’ll need to do it there or at any of the family’s homes.


How often is he by other people's homes overnight? And if you're with him you take him into a room and give it there. It doesn't need to be a public announcement.
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amother




OP
 

Post Thu, Oct 14 2021, 11:05 pm
amother [ Seashell ] wrote:
So we kept on hearing that it's no big deal, doesn't hurt.
But for my son it was really painful and I was surprised because everyone made it sound so easy.
But the truth is you get used to it. It's not pain free but the gains are tremendous.
Again, the needle prick didn't hurt, it was the medicine going in.
I think it's better to be realistic and be honest with the idea that it may hurt.


Did you reward your son in the beginning for taking the injections?
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amother




OP
 

Post Thu, Oct 14 2021, 11:06 pm
amother [ Seashell ] wrote:
How often is he by other people's homes overnight? And if you're with him you take him into a room and give it there. It doesn't need to be a public announcement.

Not often but in case it happens. But if it’s ok to skip night here and there I’d rather skip it than deal with my in laws.
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amother




Seashell
 

Post Thu, Oct 14 2021, 11:19 pm
amother [ OP ] wrote:
Did you reward your son in the beginning for taking the injections?

It wasn't necessary, he's 13 and he really really wanted to take it so he can grow. He's the shortest in his class and his younger brother is the same height as him. It was starting to affect his confidence. So he was very motivated to take it.
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amother




Copper
 

Post Thu, Oct 14 2021, 11:23 pm
Same as other posters. BH worked beautifully. My son is so happy he has grown BH! To address your comment about family members. I have family members that are very resentful until today that although the Dr suggested GH their parents refused. They would have felt much better given the opportunity to be taller.
Depending on the injection area my son felt some areas were just more painful for him.
May you have clarity and amazing results.
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amother




Copper
 

Post Thu, Oct 14 2021, 11:41 pm
Also
Sounds like your son’s results were similar to ours and after consulting with a few Dr’s we were told by one that is a friend that this is not a matter of option - determining your child’s height. since the patient is lacking a hormone you give it- hope that helps your questioning family members.
All the best!
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amother




OP
 

Post Thu, Oct 14 2021, 11:46 pm
amother [ Copper ] wrote:
Also
Sounds like your son’s results were similar to ours and after consulting with a few Dr’s we were told by one that is a friend that this is not a matter of option - determining your child’s height. since the patient is lacking a hormone you give it- hope that helps your questioning family members.
All the best!


I agree on a personal level.

But they’ll be down my throat with horror stories, attempting to have me go “natural”, and blame every challenge my son will ever have on this.
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amother




Bellflower
 

Post Fri, Oct 15 2021, 12:00 am
amother [ Copper ] wrote:
Also
Sounds like your son’s results were similar to ours and after consulting with a few Dr’s we were told by one that is a friend that this is not a matter of option - determining your child’s height. since the patient is lacking a hormone you give it- hope that helps your questioning family members.
All the best!

I took my child to an endocrinologist also. I was told the same . If the child is deficient then theres nothing to discuss. You give the hormones . My child is not deficient but this child will be short. I csnt decide what to do. I thought if child isnt deficient then it wont help much. Isnt that how it works ? Please explain . Thanks so much
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amother




IndianRed
 

Post Fri, Oct 15 2021, 12:36 am
amother [ Bellflower ] wrote:
I took my child to an endocrinologist also. I was told the same . If the child is deficient then theres nothing to discuss. You give the hormones . My child is not deficient but this child will be short. I csnt decide what to do. I thought if child isnt deficient then it wont help much. Isnt that how it works ? Please explain . Thanks so much


Depends on the child and the issue. My child is not deficient- there is a chromosomal issue that is associated with short stature. Therefore, we give the hormone and Thank Hashem everyday that it is working!
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amother




Catmint
 

Post Fri, Oct 15 2021, 12:55 am
My oldest took growth hormone for awhile. We took him off to monitor his growth and be is growing nicely now on his own. But it also looks like he might be hitting puberty early. Our endocrinologist is monitoring and said she can give him something to slow that down if need be.
His younger brother still gets the shots every night. He still seems super short to me, but according to his growth chart he is definitely growing.
One thing we asked our doctor was to calculate the dosage for 6 nights a week instead of 7 nights. We give ourselves Friday off. It also gives us a buffer day so if we miss one for some reason, he gets one on Friday and still had the full 6 days of shots.
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amother




Chartreuse
 

Post Fri, Oct 15 2021, 1:49 am
amother [ Bellflower ] wrote:
I took my child to an endocrinologist also. I was told the same . If the child is deficient then theres nothing to discuss. You give the hormones . My child is not deficient but this child will be short. I csnt decide what to do. I thought if child isnt deficient then it wont help much. Isnt that how it works ? Please explain . Thanks so much


I'm curious about this too. We are in middle of considering GH and was told the same.
To those that posted that you gave GH and your child is "growing nicely"...was there a hormone deficiency or the like to begin with or do you give simply for cosmetic reasons?
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amother




Starflower
 

Post Fri, Oct 15 2021, 7:15 am
The brand that we are on is called Norditropin and it does not have to be refrigerated it can last out of the fridge for three weeks. They recommend doing it when it’s room temperature it is more comfortable. Also, sometimes people have a reaction to a certain brand my doc said the Norditropin rarely causes burning.
For those that it is burning their skin it might be worth checking if they could change brands
Also, as I used to inject myself as a child I learned that some parts of your skin are just more sensitive so I will put alcohol on a very big part of my skin and tap a few places with the needle you can usually feel where it’s going to hurt my daughter started doing this as well
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amother




Seashell
 

Post Fri, Oct 15 2021, 8:14 am
amother [ Starflower ] wrote:
The brand that we are on is called Norditropin and it does not have to be refrigerated it can last out of the fridge for three weeks. They recommend doing it when it’s room temperature it is more comfortable. Also, sometimes people have a reaction to a certain brand my doc said the Norditropin rarely causes burning.
For those that it is burning their skin it might be worth checking if they could change brands
Also, as I used to inject myself as a child I learned that some parts of your skin are just more sensitive so I will put alcohol on a very big part of my skin and tap a few places with the needle you can usually feel where it’s going to hurt my daughter started doing this as well


I have an expensive good insurance and they didn't want to pay for norditropin until we try at least 2 other medications. My son was going to sleepaway camp and I wasn't about to start experimenting with different kinds so we just said forget it. Besides, the significant copay would double and the dr said that the refrigerated ones work best.
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amother




Seashell
 

Post Fri, Oct 15 2021, 8:15 am
Currently my son is on Nutropin Nuspin. Anyone else's child is on the same? Do they have burning too?
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amother




Khaki
 

Post Fri, Oct 15 2021, 8:41 am
amother [ Seashell ] wrote:
Currently my son is on Nutropin Nuspin. Anyone else's child is on the same? Do they have burning too?


My son is on that for almost five years. Never complained about burning. And neither did my other son who no longer does injections.
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amother




Seashell
 

Post Fri, Oct 15 2021, 8:44 am
amother [ Khaki ] wrote:
My son is on that for almost five years. Never complained about burning. And neither did my other son who no longer does injections.


Does he inject it straight from the fridge?
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amother




Maize
 

Post Fri, Oct 15 2021, 10:13 am
My son is extremely short but the test came back negative, he does not have growth hormone deficiency and so insurance denied us. I kind of pushed it out of my mind but this thread is having me think about it again…is there any way to get them to change their mind and approve it?
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amother




Cornsilk
 

Post Fri, Oct 15 2021, 10:42 am
amother [ Maize ] wrote:
My son is extremely short but the test came back negative, he does not have growth hormone deficiency and so insurance denied us. I kind of pushed it out of my mind but this thread is having me think about it again…is there any way to get them to change their mind and approve it?


If your son meets FDA guidelines for short stature, which he probably does if your endo recommended GH, you can ask them to file an appeal with the insurance company. Many offices will help with this appeal (called an internal appeal), but not all do. Depending on your insurance, you can sometimes get GH directly from the company while you go through the appeal process. You can call the GH manufacturer for more information on that. If you have Medicaid or TriCare they usually won't cover the GH during the appeal process.

If you are still denied after the internal appeals (I think there are two) then you can file an external appeal. The insurance company will send you instructions for how to apply when they reject your last internal appeal. I don't think any physician's office helps with that, but you can find help online on what to include. MAGIC foundation may be a good resource too.

I filed a successful external appeal.

If your external appeal is denied, I think you can request something called a Fair Hearing, but I don't know for sure. Most manufacturers also offer discounted medication based on financial need. Google the manufacturer name and financial assistance to find out more.
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imaima




 
 
 
 

Post Fri, Oct 15 2021, 10:51 am
amother [ OP ] wrote:
What do you do when they go away overnight, when they’re young?

I don’t think I can trust him yet to do it by himself - he’s very young, but I cannot either rely on my in laws family to help when they’re adamantly against such things (even if we go the rav route). My kids rarely go, but if they do… I guess I’m just thinking of all the what if’s right now. I don’t want to panic in the moment.


Just tey to avoid these situations. Corona makes it easy to distance from people.
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amother




Starflower
 

Post Fri, Oct 15 2021, 2:58 pm
For anyone that is in New York Dr. Notto at Phelps fights for kids that are short. He will fight with insurance he is very passionate. He is a little bit strange but if this is the issue that you’re dealing with he is the right person to go to if you have been denied by insurance
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