My children on growth hormones AMA

amother

Thu, Nov 07 2019, 9:03 am

Reading the other thread and reading many threads on this topic here. I find that a lot of people have misconceptions about growth hormones. Why they are used and if they are good. After years of going to doctors and questions about my child's health we discovered she was growth hormone deficienct. And the progress she has made on them has been amazing. The research that I have read and people who I have talked to have made me understand a lot more about growth hormones in children and what they do. Seeing some people say I will never do that is very concerning because it's not fair for your child to just say that without understanding what they are really there for. ( Possibly facing long-term side effects from not using) I would never recommend someone to use growth hormones for no reason good reason or because it's cool to be taller. It's very expensive we're always fighting with insurance company. We have to go to the doctor very often for progress they have to do blood regular to make sure everything's okay. And it's a daily shot you have to remember to take it I have to pack it up when you go away has to be refrigerated. So just so you should know 2 children on them now oddly enough for a very different reason one is growth hormone deficienct. And one is labeled ISS .

amother

Pearl

Thu, Nov 07 2019, 9:23 am

What are the reasons why you're giving it? when did you realize you should be doing something about said reasons? how did you do your research? where'd you start?

amother

Thu, Nov 07 2019, 1:41 pm

amother [ Pearl ] wrote:

What are the reasons why you're giving it? when did you realize you should be doing something about said reasons? how did you do your research? where'd you start?

I am going to answer in 2 post one for each child I will start with my growth hormone deficienct child .
It really started before she was born she wasn't growing well in utro. When she was born she seemed fine I didn't think to much into it. she did breastfeed she had issues and did some bottles also. At about 7 months she stopped nursing on her own and thats when it all got really bad.( interesting I read babies can get some hormones from Mommy's mik)
She was constantly sick always at the Dr very delayed. So really a lot of different things going on. At about 9 months her growth curve was flat and by 12 months it was dropping.now being small and not growing are not the same even with short parents. We ran from specialist to specialist doing all different sorts of tests trying to find an answer. At one point they took out her adenoids and tonsils hoping that will help ( and outher reasons) and it didn't do much. At about two and a half we did go to the endocrinologist and the initial blood work didn't seem as though she was not growth hormone deficienct . She went from ages 2-3 with no growth and no weight gain and no answers. Finally the GI put her on an appetite stimulator medication hoping that would help and also we add feeding therapy hoping that would help. And that's when she started gaining weight and we were happy with the progress. At her five-year-old visit the pediatrician noticed her weight was catching but her hight didn't only not play catch-up but was slowing again. So back to the endocrinologist we went and at that point we did the growth hormone stimulation test. Where my endocrinologist thoght that my daughter was more of an ISS Bec of her blood work. Shockingly enough when we got the results back she was super deficient she wasn't making nothing but she was really low. They like to see numbers above 10. 7 to 10 is kind of a gray area she was a little over 3. At that point we were sent for a brain MRI to make sure nothing is growing on the pituitary gland making it not produce enough. Bh there was nothing on it but they did see on MRI what was causing her deficiency. Our insurance approved it without an appeal which is crazy amazing and just shows how badly she needed it. She is also considered SGA which means she needs to take a little bit extra to help. If I can show you a picture of my child who was tiny had a baby face and just did not look her age at almost 6 to what happened once we started was amazing. Starting to grow and change was amazing was also kind of hard emotionally for me seeing my " baby" just start changing so fast . We had to switch endocrinologist my new Dr loves looking at her old chart cuz it's just so amazing. I see her around friends now and she is at a similar hight. a lot of people asks so why don't I just stop now she's growing. And the answer is if I stop the meds her growing stops . Her overall health is better she's not always sick anymore. For now we need to do at until her bones close then to do you another stimulation test. Since adults who don't produce enough growth hormones lack muscle and tend to get very exhausted easily. Also another interesting fact is her bone age is not delayed when you are mature that in your peers you hope your bone age is delayed that usually shows a late bloomer.

snowflake1

Thu, Mar 04 2021, 7:56 pm

Hi OP
I know this is an old thread but I found it recently. My daughter is going to be starting growth hormone and I have so many questions. I was wondering if I could private message you since you sound like you have a lot of experience
I completely understand if you’re not comfortable

amother

Thu, Mar 04 2021, 8:09 pm

snowflake1 wrote:

Sure would you like me to send you a pm

amother

Blonde

Thu, Mar 04 2021, 8:38 pm

Following, in case this thread gets revived. We’re considering growth hormone therapy for my child, possibly children. I’m so uncomfortable with it, especially since people keep saying “they still have plenty time to grow!”

They both had IUGR. Is that what your child/ren had? I was under the assumption that IUGR wouldn’t have long term effects.

amother

Orchid

Thu, Mar 04 2021, 8:45 pm

I’ve had two sons on growth hormones, one for idiopathic short stature, the other for Shox gene deficiency. It’s really not a big deal. If your child needs it, do it. You’ll probably have to fight the insurance company but most doctor offices will help. With my son with the Shox deficiency, it was approved immediately. My other son is done with the injections, after close to ten years. He’s about 5’6” though he may still grow. If I hadn’t done it, he might not have made five feet. B”h no negative side effects.

snowflake1

Thu, Mar 04 2021, 8:48 pm

amother [ Blonde ] wrote:

Yes that wd b grt

amother

Fri, Mar 05 2021, 8:08 am

amother [ Blonde ] wrote:

One of my kids on gh was iugr and small for gestation age she is also growth hormone deficient have you done a stim test yet ? Don't listen to "people" kids don't always have plenty of time to grow your bones can close before your done growing. And it can lead to outher issues. What questions do you have? My baby is tiny iugr my pediatrician not worrying this time Bec we know we probably just need growth hormones. My daughter is way healthier since we started. My outher child is iss so it's different she started was short but we were hoping late bloomer but she started developing at a young age and having her puberty spurt. My dd who's deficient also developed on the early side but not too early the crazy part is my helth insurance wanted to lower her dose years before Bec she has so much time. She's been using gh for 7 years and counting

amother

Blonde

Fri, Mar 05 2021, 9:22 am

amother [ OP ] wrote:

What’s a stim test? We did regular bloodwork and nothing concerning. Bone age was actually 2 years ahead! We’re waiting to see an endocrinologist but there’s a long wait. Dc is 8.

amother

Fri, Mar 05 2021, 9:51 am

amother [ Blonde ] wrote:

What’s a stim test? We did regular bloodwork and nothing concerning. Bone age was actually 2 years ahead! We’re waiting to see an endocrinologist but there’s a long wait. Dc is 8.

It's a growth hormone stimulation test it's like a three-hour test where they constantly take your blood work and use different medications to make your body produce your levels of growth hormones so they can get idea of if you're deficient or not.I'm not exactly sure how it works but according to like insurance anything over 10 is passing between 7 and 10 is kind of like a gray area my dd who's deficient her highest number was 3.( My dd who iss peaked at 13) if your son is short and his bone age in ahead it actually shows a bigger issue than if it was delayed would be good that shows that you're probably a late bloomer. Did your pediatrician order these tasks has he's never seen an endocrinologist before. If your child fails the stim test before they go on growth hormones you have to do an MRI of the pituitary glands to make sure there's no tumors or anything on it. Sometimes also your pituitary can be small. In our case because of everything the insurance never denied my dd

amother

Fri, Mar 05 2021, 9:53 am

One more points my daughter's blood work didn't look terrible they thought she was ISS not growth hormone deficient and they were surprised after all tests what her issues where. She was 2 when we first went and 5 when they did the stim test and started gh treatment

amother

Blonde

Fri, Mar 05 2021, 11:14 am

amother [ OP ] wrote:

if your son is short and his bone age in ahead it actually shows a bigger issue than if it was delayed would be good that shows that you're probably a late bloomer.

I’m assuming there’s a typo here. Can you explain?

And yes my pediatrician ordered the bloodwork and bone age. That way we have a head start with the Endocrynologist. He’s never seen an Endocrynologist before.

Regarding the stim test, my son doesn’t sit still. I don’t know how we can do a three hour test Sad

amother

Fri, Mar 05 2021, 11:22 am

amother [ Blonde ] wrote:

Showing a bone age ahead of your age is a sign of growth hormone deficiency. If you're going to just delayed it's usually a sign of a late bloomer. You can watch videos your hooked to an iv you can't run around also some of the medications they give you make you tired to stimulate nighttime levels of growth hormones when it's usually higher

amother

Turquoise

Fri, Mar 05 2021, 11:23 am

I’m dealing with kids who are unusually tiny too.
One is seeing an endo.
The other one I have to speak to his pediatrician about having him see the endo too.
This is a very helpful thread because I’m definitely concerned.
They both had sga and/or iugr suspicions in utero.

snowflake1

Fri, Mar 05 2021, 11:24 am

Before doing the bloodwork I would see the endocrinologist a lot of times they ask for much more in-depth labs and then you’ll have to get him stuck again this is what almost happened to us and then I decided to ask
Regarding the stim test do you allow watching on a device because that is how we got through it.

amother

Blonde

Fri, Mar 05 2021, 11:29 am

snowflake1 wrote:

The endocrynologist actually asked for the labs. He did fine with the bloodwork so I’m not concerned about him having to be pricked, but I don’t want this to be delayed further.
Yes I’m ok with him watching. Where is the stim test done? Endocrynologist’s office?

amother

Blonde

Fri, Mar 05 2021, 11:34 am

I’m wondering, then, if growth hormone therapy is so simple, why isn’t it done more often? Do I take my other child as well? Slightly less small for age, but also like smallest in the class. Similar age. I want transparency. Why isn’t it done more often than it is?

amother

Fri, Mar 05 2021, 12:02 pm

amother [ Blonde ] wrote:

It's not simple not everyone who's small goes to an endocrinologist qualifies for growth hormone . Also a lot of kids are on it you just don't realize

amother

Babypink

Fri, Mar 05 2021, 1:29 pm

amother [ Blonde ] wrote:

My daughter is 7. At her last checkup she was in the 1% for height...Basically almost off the chart for her age. Shes the shortest in her class as well.
The doc recommended we focus in nutrition and give her calcium supplements every day. If at age 8 she didn't gain in % height then he'll order all bloodwork and bone growth tests.
He did tell me that majority of his patients do not go on growth hormones once the results come in? Duno if its cuz of unknown side effects of hormones...