New to Community - Mom of a 15 year old son on Growth Hormone shots

Jamie - posted on 01/29/2013

Annie- I would love to hear about his experience. My 10 year old will be starting his shots Friday. How severe was the pain? Was physical therapy recommended by the doctor? I have a lot of concerns.

Annie - posted on 11/08/2012

Hi, looks like Kim may not be monitoring the site anymore... i was hoping to hear from her too! My son just started the shots, 2.5 months ago, we did all the tests and fought all the battles... i would be glad to share the experience... MY SON IS VERY EXCITED to be on the shots and has great expectations... I hope he is not disappointed... he is already thinning out, is not as tired, and his behavior at school has improved...

Annie - posted on 11/08/2012

Hi Kim! My son is 13 and just started the shots 2.5 months ago... he has seen some foot growth and and a bit of height already! He is hurting though... his feet hurt and his tendons are tight... i am hopign it is growing pains! I just got his signed up for physical therapy to try to help! I would really like to hear about your experiences with hgh!

Glee - posted on 10/02/2012

kim, are you still around? My son just turned 15 and his ped is referring us to an endocrinologist. I'm scared. He's short, but he's adjusted to it. He's always been 1%.

Heather - posted on 02/28/2009

No prob Staci! ;) I understand. Yes it is hard to see parents giving gh to kids just to make them taller when it's not necessarily needed. It actually ticks me off, cause it gives the rest of us that DO LEGITIMATELY NEED it a harder time with insurance companies,etc. I hated having to give my girls their shots when they first started them...knowing in my head that they'd probably be taking them the rest of their lives (if they're like me and don't produce their own gh as adults). I was told by my own ped endo that GHD wasn't genetic, but have found out just the opposite in my own family. I feel lucky that they never fought me to give them their shots, as I have seen posts by many parents and met others at the endos office that have to deal with that regularly. I know that if our 4 yr old has to take them, come May (which I'm pretty sure she will...as she's close to 5 yr old and only 33" and 33lb) that she will most likely be the one to fight me on it. She's my strong-willed one and quite the lil pistol. However, she has had the benefit of seeing her sisters take their shots and may surprise me by not fighting. I am glad that your 7 1/2 mo old is growing so well though! That's great news that she's not likely to be ghd too. There seem to be quite a few of us on this forum with multiple children with GHD.

Staci - posted on 02/11/2009

Heather~ By no means was I trying to convince moms not to give hgh shots if medically necessary:) It just upsets me to see parents putting their children through it when it's just because they are shorter than most in their class. I'm glad that my daughter gets them, even though it's a fight most nights. Just last night, we were measuring my 7 1/2 month old, and she's already just about as big as Storm was when she was almost 2. Thanks for your insight, and good luck with your girls:)

Heather - posted on 02/10/2009

Laura Wagoner,

I read your post and wanted to reply. I too started hgh shots at jr high age. I was teased a LOT prior to taking them. I was 4'2" tall and 13 1/2 yrs old. It was aweful. After all the gh testing was finished and deterimined I was ghd..I started the shots. I grew 14" over the next 3 years and fit in very well during my high school years. I consider myself lucky to have gotten them and grown that much during that time, considering most teen girls STOP growing between the ages of 14-16. Waiting til your daughter is 15 or 16 will probably be too late to do much good, since even with ghd, her growth plates may already close by then. However, these are questions you should pose to your endo. and soon.

Heather - posted on 02/10/2009

This is in reply to Staci Sessler- Hannen's urge for parents to think long and hard before putting their children on hgh shots. Yes, I agree that if a child is NOT ghd, to NOT put them on shots. A child should not be put on hgh just because they're shorter than their peers. That is something that one can learn to overcome and potentially gain strength of character from, depending on how they are raised. However, if they are legitimately ghd, then by all means put them on hgh. It is not JUST a matter of height in those instances...there are other medical concerns. Growth hormone, or somatotropin, is responsible for a whole host of other functions in the body besides just linear growth. Not having it causes other problems besides a lack of height and peers teasings a child. I too was ghd as a child and am also ghd as an adult. I have two daughters that are ghd and possibly my other two daughters (who are being seen in May for it). I speak from experience. There are a LOT of problems associated with the lack of gh in the body.(the Magic Foundation's site notes many of this if any are interested) Please don't ignore a legitimate problem because of fear of having to deal with giving your child an injection each night. The needles are NOT intramuscular and don't cause any pain. They are the same needles that many diabetics use to inject insulin multiple times a day. These needles are much nicer than the ones I had as a child. My daughters started to take their injections at the ages of 4 & 6 and handled them just fine...no fighting. I just told them they needed them and I gave them. It became a nightly routine as regular as brushing their teeth. At the ages of 10 and 12, they now give their own shots and probably could've started giving them a lot earlier. I've met kids that do. If your child is legitimately diagnosed with have ghd, then do not hurt them by NOT giving them what their body NEEDS to function properly.

Heather - posted on 02/10/2009

I've got two daughters on hgh shots for the past 6 1/2 yrs now. Our insurance covered most and medicaid picked up our co-pays til this past year, when they refused to pay the copays for it anymore. We cannot afford even the copays. We were referred to the Bridge Program for help, but they were limited in the help they could give us. Now, our daughters receive co-pay assistance from Patient Access Network Foundation. They were approved for up to $5,000 assistance EACH for this year to help with copays and payment for supplies (syringes,alcohol swabs,etc). They have a website you can start the application process at. Just type their foundation name into any search engine and you should find it. ;) ---- Heather

Staci - posted on 02/09/2009

Rachel~ Good luck with the testing this month! I will keep you in my prayers. I hope you are finally able to get some answers!

Rachael - posted on 02/08/2009

Staci, I understand your point.  We are being tested for the deficency.. i think that is what will push us over to the shots or not

Despina - posted on 02/05/2009

Mu son is not een hes 7 GH for 4 years below the 3rd to 25th!

Staci - posted on 02/03/2009

PLEASE, think long and hard about giving your children growth hormone shots if it's not medically necessary. The fights we go through every night with our 5 year old bring me to tears. I too was one of the shortest in my class growing up, and yes, I was teased. But between being teased, and having to go through what my daughter does every night because she has to have them, I'd take being teased. If your children do not have a deficiency, there is a chance that they will have a growth spurt before too long. If not, and they are destined to be a bit shorter than their peers, teaching them self-confidence and self-reliance will go far. I have become a very strong woman, and even though am shorter than most, I am not afraid to stick up for myself and speak up when I need to. One of my best friends is only 4'9", and she too is one of the strongest women I know. Her parents got her involved in Tae Kwon Do (as was I) when we were young, and we spent many years in that, and it did wonders for our self-confidence. I urge you to look into something like that before doing something drastic like growth hormone shots. They are expensive, and most kids have to have them every night. I believe most insurance companies are hesitant to cover them, even if they are medically necessary. The risks to me outweigh the benefits if it's not necessary for them to have. Just my honest opinion, just thought I'd give you a perspective from someone who has had to deal with it the last 3 years:)

Tammy - posted on 02/03/2009

Hi - I'm so glad I found this site. I too am a mother to 11 and 12 year old boys. My oldest is in 7th grade and is easily 8 to 12 inches shorter than everyone in his class, girls included. My husband is short as is his father, so I know it is genetics. However that doesn't make it any easier to deal with. His personality is more intraverted and between that and his height, he is overlooked for many things. He gets along with the others in his class, however they still give him a lot of trouble about his size. Additionally, he loves sports however his height has held him back. We call him Mighty Mouse because he is very strong, but if he had the height more people would take him more seriously. Our other son is one of the oldest in his 5th grade class, however we have noticeds that most of the kids are rapidly passing him up. I don't believe he is on the path to be quite as short as his brother, but it will be close. My husband and I have considered growth hormones for the past several months. My husband who is only 5'3" has had to deal with the short jokes all his life - and it doesn't get any easier. So he is really wanting to get as much information about the shots as possible. If anyone one of you who have information about the shots, such as side effects, cost and how often and how long, we would greatly appreciate chatting with you.



Thanks.

Laura - posted on 02/01/2009

Thanks so much for posting.  Just today, my husband and I were discussing whether or not to talk to my daughter's doctor about growth hormones.  Emily is in 7th grade and is a good foot smaller than most of her classmates.  She is teased a lot and acts out often; she seems to overcompensate with her mouth, if you know what I mean.  She has been through a series of genetic tests and thank God they ruled out Turner's Syndrome and determined she has a delayed growth syndrome.  The doctor suggested we just wait it out and that she would start growing at about 15 or 16 and would grow until she was maybe 21-22.  However, she is having such a difficult time in school, we're considering talking to the doc about HGH shots.  I would so love it if you would share with me your experience with the growth hormone's.  We figured that the summer between 7th and 8th grade would be an ideal time because a lot of kids grow during that time and it would not stand out for her.

Thanks so much.

Lynn - posted on 01/24/2009

Have any of you seen any links between asthma medications and growth deficiency?

Kim - posted on 01/22/2009

You are an inspiration!  I'm sorry for your loss of the baby - there is not greater pain I am sure!  Sounds like you take each day as it comes and are doing all that you can to give her the best advantages.  I commend you for that!  I hope that you have friends and family that are near helping you through the tough days.  Where do you live?

Staci - posted on 01/22/2009

Thank you Kim! We have to alternate her shots between her arms, legs, and bottom (her little tummy doesn't have enough fat yet!). In order to give her a little more control, we usually let her pick the spot, but after 3 years, she's already got soooo many little scar marks everywhere. She also wants to do anything to be able to grow, until it comes time for her to have it! On top of Storm, we also had a baby in 2006 that only lived 16 days, so when people tell me that God only gives you what you can handle, I'd like to tell him enough already! I'm just hoping that as Storm grows, we don't run into more hormone issues that she will have to take shots for. The doctors just don't know what will happen, as they really haven't seen anyone with all of the problems she has all at once. We don't even know if she will be able to have kids when she gets older. It will just all depend. We also have to watch for seizures, so I'm sure this will be a very long road with her. I'm really thankful she hasn't had any yet. Thanks for reading:)

Kim - posted on 01/22/2009

Wow!  I am blessed that my son handles his shots on his own.  When he first started, we didn't have the pen, just a regular syringe.  At that time, I had to give shots in his bottom but he has never fussed about it.  Being a boy with big friends, he would do anything to grow!!!  You have certainly had your hands full - it takes very special parents to deal with the health issues you have seen.  God put her in your life for that purpose!

Staci - posted on 01/21/2009

My 5 year old has been on HGH for a little over 3 years now...be thankful your son is old enough to understand why he needs to have them:) Storm was diagnosed with an ectopic pituitary gland shortly after birth (spent 25 days in the NICU, born at 42 wks), and also grey matter heterotopia, focal polymicrogyria, and dysgenesis of the corpus callosum. Besides her small size (she's the smallest in her pre-k class, and has been since she started 2 years ago, even though she's almost the oldest in her class now), she is doing very well, and you'd never know she had so many problems. Up until about a year ago, she was really good about getting them. Now it's a fight almost every night, usually with wailing and the mantra "I don't want to be big, I want to stay small!!!" And her dad and I chasing her around the house, holding her down, and hitting the pen as fast as we can to get it done and over with. I can't wait for the day she's big enough to do it herself! We are constantly bribing her, with promises that if she keeps taking them, she will get big enough to do things on her own, like go on the water slides and stuff. Good luck everyone with your quests for diagnoses!

Rachael - posted on 01/21/2009

yay.. we don't make close to that much

Kim - posted on 01/21/2009

I am not sure of the exact amount, but it's just over $100,000.00 per year combined household income.  They take it off last year's taxes.

Rachael - posted on 01/21/2009

in a way, I am hoping that the GH tests show a lack of GH... at least then we will have an answer.. but then at the same time... i don't know if I am ready for another battle with the insurance company

Kim, Do you know the income limits from teh pharm companies?

Kim - posted on 01/20/2009

We have worked with both pharm. companies for the meds.  Our insurance is not very great and with the expense, we exhaust our prescription coverage by March each year.  We have been able to receive grants through the manufacturer for the past two years to get free drugs when our coverage runs out.  It is worth the research and time - it gets confusing sometimes.  I don't think we will qualify this next year due to income limits so we just pray!

Christina - posted on 01/20/2009

Rachael..   I would  be in my glory  when Megan finally hits  in the chart ..    We will see ..   Hopefully I will get an answer soon from the insurance co and   start the GH therapy ..    Im still a bit iffy ..  but it seems like it will help her ..     I hope they are right ..   Her GH levels were non existant ...   She just had her MRI of the brain to check her pituitary gland ..   and I am hoping for the best..         

Rachael - posted on 01/20/2009

haha, Christina... I have never seen the bottom of the chart either....  I would be amazed to see 3%...

Christina - posted on 01/20/2009

How was it  in the beginning ..  were your girls excited??      How much have they grown so far..  ????

Christina - posted on 01/20/2009

Kudo's for u ..    I cant wait till my little girl ..   she's only 5   but she takes a hit in school..  everyone thinks she's a doll ...  and she comes home soooooooooooooo upset....    Im hoping when the insurance co approves her  gh shots that all that will b behind ..    We have never seen the bottom of the chart    yet alone above one ..    

Emily - posted on 01/19/2009

I have 2 girls on the HGH shots.  We have only been doing it about 8 months.  I am so familiar with the school CRAP that goes on.  My 10 year old had people picking her up and carrying her around like a baby and the teachers just thought it was cute.  She would come home devistated.  I've never seen what the 15% looks like on the chart.  Is it gorgeous???

Rachael - posted on 01/19/2009

how exciting!  M is only 4, but hasn't even seen the bottomw line of a growth chart he is so small. we are having GH testing done in Feb. I am hoping that it brings some answers