OT- Growth Hormone Therapy?

[karenTX]

Hi there!
Is there anyone who has a child, hopefully a girl, who is on growth hormone therapy? My DD's endocrine doc wants to start her on GHT soon and I have lots of questions. I have found some neighbors and friends of friends that have boys on GHT but am really needing to find a parent of a girl to ask some questions to. This is such a hard decision to make with so much information out there!! Thanks so much!!!!!

 

[Erica09M]

I think it would probably be a great idea to find a message board dedicated to this topic directly, because this can be a very sensitive/controversial topic, and I wouldn't want someone to say something rude.

((HUGS)) I hope you find the information you need!

 

[karenTX]

Believe me, I have looked at a ton of boards regarding this topic. But seeing as I've been part of the DIS for 10 years, I feel I can ask here too. There are more helpful and supportive people here then rude ones.
Not to mention, there is nothing shameful or embarrassing about being on GHT. We all do our best as parents.

 

[Erica09M]

Sorry, I wasn't saying anything negative. And I wasn't saying you couldn't ask here. I just thought that the best support might not necessarily be here. But if you feel that there could be, then that's great! That's all that matters

And like I said before, I hope you find the information that you're looking for

 

[karenTX]

Thanks for the PMs y'all!! I'm trying to get back to you asap. Thanks again for the support!!

 

[ireland_nicole]

Hi; my Endo recommended it for my DD who is also SGA after being a micropreemie. We decided not to go forward, though; primarily because she also has autism and wouldn't fully understand the shots. Not sure if it's helpful, but just wanted ya to know there was someone else in your boat.

FWIW, both my brothers were on GHT d/t a form of pituitary dwarfism that my DS may have inherited, so we'll be revisitng the whole question again soon.

 

[pnutallergymom]

We just started GH with my DD 3 about 3 months ago. She has Noonan Syndrome, so it is one of the indicated therapies for use. She actually isn't growth hormone deficient, but we decided to move forward to gain the benefits of increased muscle tone, bone density, and hopefully some weight gain. She is on Tev-Tropin. She gets .275 daily. We are monitored very closely by Endo and her cardiologist.

Just wanted to let you know that there was another Dis'er here going through the same thing!!!

Good Luck!!

 

[karenTX]

Hi; my Endo recommended it for my DD who is also SGA after being a micropreemie. We decided not to go forward, though; primarily because she also has autism and wouldn't fully understand the shots. Not sure if it's helpful, but just wanted ya to know there was someone else in your boat.

FWIW, both my brothers were on GHT d/t a form of pituitary dwarfism that my DS may have inherited, so we'll be revisitng the whole question again soon.

My dd was a micropreemie too, 29 weeker (stopped growing at 26) 1 lb 10 oz. She's SGA/ISS and we're going to be testing for GHD soon. Our insurance doesn't think SGA/ISS is a reason to cover GH.

We just started GH with my DD 3 about 3 months ago. She has Noonan Syndrome, so it is one of the indicated therapies for use. She actually isn't growth hormone deficient, but we decided to move forward to gain the benefits of increased muscle tone, bone density, and hopefully some weight gain. She is on Tev-Tropin. She gets .275 daily. We are monitored very closely by Endo and her cardiologist.

Just wanted to let you know that there was another Dis'er here going through the same thing!!!
Good Luck!!

I'm really hoping it'll help with her bones & weight gain too!! May I ask how your doing on the shots? Do you use a numbing cream or any other tricks? I've read about Elba (?) cream or using ice.

Thanks so much!!! It's nice to know we're not alone!!!

 

[momma2minnie]

KarenTx

I don't have any advice, just wanted to say your little one is absolutely adorable! She looks so happy! Best wishes to your family!

 

[pnutallergymom]

KarenTx,

The shots are really easy. We use small insulin needles. I gave one to myself with saline before giving it to her, just to see how it feels. Honestly, it was a teeeeeny, tiny pinch. There are certain spots you can give the shot, usually the upper part of the arm (fatty part) and the upper part of the thighs. You aren't supposed to give it in the same spot all the time, so we just rotate. Left leg for a week, right leg for a week, etc... You wash the area with an alcohol wipe, pinch up the skin, and give the injection and hold for 5 seconds. Brigitte doesn't even feel the shot, she is more annoyed by the "pinching of the skin part." I know alot of friends whose children are on it, and they give it at night when the kids are sleeping. This isn't my personal preference, but everyone has their own way.

I don't think that Emla cream is necessary at all. I wouldn't even take the time to use ice. Really, it doesn't even hurt. We make a routine out of it, and like I said, she fusses because she knows its coming, but doesn't flinch when the inj. goes in...at all, I've watched and paid attention to her reactions. We make sure to give a good hug and read a story right afterwards. We have been told that giving it at night is better than the day, as there has been research that kids grow a bit more if its done at night. We also give it at the same time each night too.

Alot of insurance companies deny the GH. The actual pharmaceutical company which you will end up getting the solution from, will also help file the paperwork correctly after you are denied the first time.

Oh, the other thing, is that everything is delivered to the doorstep every 12 days. Each vial has to be refrigerated, and is good for 2 weeks. They will send you your GH, alcohol wipes, syringes, and a sharps container. It is very, very easy.

Good Luck. Hope this helps!!

 

[karenTX]

You are Fantastic pnutallergymom!! That is exactly what I needed to hear!! Glad to know that the shots are no big deal, pain wise! I think my DD will fight at first then get over it in about a week or so. That seems to be her normal pattern. Is it bad that I hope she is GHD so I won't have an insurance fight? Thanks again for all the info!!!!

Thanks momma2minnie!!!!