Childhood Growth Hormone Deficiency support

Stacey - posted on 01/20/2013 ( 11 moms have responded )

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I'm looking for other moms or families dealing with something similar. My daughter was diagnosed in December after a long ordeal. I haven't really met anyone else that's dealing with anything similar. I have only found The Magic Foundation when I search online for support groups. You have to pay to get connected with other families, which is fine, I just don't have the $ right now to join. Hoping I can find some other mothers here to start a group.

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Stacey - posted on 02/22/2013

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Sorry I took so long to respond I've had a lot of stuff going on. The nurse told me that the pen needles actually hurt worse than the regular needle syringe. It could be worth a try and asking the doctor about it. The syringe we use has a 31 gauge needle and 8mm (5/16") in length. (The higher the gauge the smaller the needle) with the dose being a higher volume there aren't any that I know of that are very small, but it doesn't mean there isn't. I'm going to ask the pharmacist at work about it to see if she knows of any for that dose that are small. So far with my daughter I haven't noticed any growth. A little weight gain, but not a lot. They did tell me it would be a few months before we would see any growth. We go Monday to MCV for a follow up with her endocrinologist. Did they tell you to only inject his legs? I was told the areas for injection are the back of the arms, front and back of thighs, stomach (at least 1 inch from belly button), and her rear end. We rotate with all but the stomach. She doesn't want to do the stomach so I don't push her on it. I know it is hard seeing his legs look like a pin cushion, I'm sorry you have to go through that. With my daughter's we don't see where it's been injected. We were told the first year we would see 2-3 inches and I'm like you I really hope that it's all worth it in the end. It feels like there is no definite prognosis and its hard not knowing how all this will end. I joined that organization the magic foundation and I'm thinking about attending their convention they have over the summer. They do it every year in Chicago. They have a lot of things that seem like it would be helpful for both my daughter and for me. They also have a lot of helpful information on their web site. I tried to send you a private message with my email address. Idk if you got it or not. If you would like to exchange contact information I'm ok with that. Idk about you, but I don't really know anyone else that can really understand what I'm going through or that she is going through. That's pretty awesome that the company gave you the suoplies for free! That's unheard of for a company to be that nice or generous.

Jamie - posted on 02/11/2013

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I tried to post this reply already but don't see it so forgive the double post if it shows up.
He uses a pen device with a tiny needle with a 1.1 mg dose. It showed two different pens with his being the smaller of the two. My insurance has still not approved it, so the company has given us the medicine and supplies free until that goes through. I really don't know what to expect after that. Can you give me an idea of what to expect?
It has gotten much better now. He is helping me hold the pen and push the button which helps him remain more calm and feel in control, but sometimes he jerks and just causes more pain than necessary. But I don't think he would be able to do it otherwise. I think my pinching his skin hurts worse than the shot. I do think that partials will be a good option. We actually saw a young teenager at the doctors office with some and you couldn't tell.
Do you think your daughter has grown yet in height or weight? I was told to expect 4 inches on average as a growth from the 1st year of meds, so I am hoping that it won't take long to see progress. As I see the little marks on his legs while looking for a new site to inject, I just hope that the results will be worth it!

Stacey - posted on 02/10/2013

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Sorry the first shot went so badly! Have they gotten any easier? What needle/syringe are they giving you? And the dose amount? Depending on the dose you may be able to get a smaller needle. I'm a pharmacy technician so I can figure out if there is a smaller needle than what you're using. You can go into any pharmacy and buy needles/syringes and they're not very expensive. As he gets older can they give him partials until he can get implants? I was amazed we didn't have to hold my daughter down. The nurse was in front of her and kinda had her arm around her and my daughter cried and wailed. When I was done she hadn't realized she was stuck already. So thankfully no arguments every night! That is great there weren't any syndromes! One doctor is enough to deal with!!

Jamie - posted on 02/06/2013

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So, that was a horrible first shot! The nurse and I had to hold him down kicking and screaming. I guess it will get easier with time.
Anyway, the geneticist also released him because he doesn't think there is a syndrome- great news. So now we just have endo and ortho. His teeth issue is that the teeth will never be there. He will have to get implants once his mouth is finished growing which may not be until he is around 20. Right now its not too noticeable because he does have those main front teeth and a lot of kids still have missing teeth, but when he is a teenager I'm sure it will be noticeable. They're not doing braces yet but will eventually to keep those spaces open for implants. My 8 year old got braces a few months ago- at least we can space the two out!
Poor baby to think she was dying. I can imagine how scary it must be for them not knowing whats going on with all those doctors. I am thankful that my sons issues are minor.

Stacey - posted on 02/03/2013

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Oh and I forgot to add my daughter doesn't have nearly the amount of permanent teeth she should have. She had a bad under bite and they had to put braces on her. She just got the first phase off the same day we started her injections. They have to wait for more of her permanent teeth to come in to put braces back on and finish fixing her teeth. I hope the next appointments to well and find that you don't have to go anywhere but the endocrinologist from now on!

Stacey - posted on 02/03/2013

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I can completely understand wanting to get it started because the unknown really is scary. the nurse that caame and walked us through it said some people give the shot to their kids while they're sleeping. with my daughter i took the approach that she have say so in where she gets injected each night. I feel like she has to go through this and I feel like she needs to have control over something. She has the say in certain places she doesn't want to get injected. Originally she didn't want to be injected in her rear end or stomach. I convinced her to try her rear and I only pushed that because I knew it would be the least painful and I promised if she didn't like it then we would never do it again. It turned out that's her favorite injection location. She still won't do the stomach and that's ok with me.

I am guessing the syndromes are probably the ones her doctor spoke about. They tested her for something called turners syndrome and I think that is one of those genetic disorders along with pradar-willi syndrome. One of them has to do with a chromosomal issue. I've done a ton of research on everything pituitary related. It somewhat helps that my ex husbands sister was diagnosed with a micro adenoma (tumor on the pituitary gland) a couple years ago so I knew a lot of symptoms which was one reason I was certain something was not right with my daughter. If they haven't done an MRI or ruled out other syndromes you may want to ask the endocrinologist about the medication being ok in the chance it is one of the other syndromes. My daughters doctor waited until everything was ruled out because if there were a tumor the injections would cause the tumor to grow and she would have needed oral medications instead. There are extra precautions listed on my daughters meds for the turners and pradar-willi syndromes. But each med is different to some extent. Hopefully your son's scoliosis isn't a symptom and instead an unlucky coincidence. My friends daughter that had scoliosis also had two heart surgeries and a pace maker put in. The poor girl was crying before her back surgery and asked why these things keep happening to her. It was heart breaking. My daughter thought she was possibly going to die and that was why she had to get all the tests done. It was very hard hearing her say that. I hope the nurse doesn't reschedule your next one. If they try to reschedule you I'd ask the doctors office if you can come in and be shown how to do it. They shouldn't be rescheduling people that way. I think they forget that it may be normal day to day stuff for them and forget for us it's very hard and anticipation makes it worse.

Jamie - posted on 02/01/2013

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The nurse has put off her appointment to come help with the first shot till next week- 2nd time its been put off. We are just ready to get it going and get all of unknowns behind us. Yes, I think I will call his orthopedic doctor and check on that- good idea. My son was also seeing a neurologist due to hyper reflexes-as of this week they are still high but not increasing, so that dr said we don't have to come back-yay! He has a geneticist appointment Monday and I am hoping that that dr will say the same thing... our pediatrician originally referred us because he was concerned that there was a syndrome associated with his short stature, scoliosis, and lack of many permanent teeth. Anyway, I appreciate the information and would be interested in anything else that comes up and how things go for y'all.

Stacey - posted on 01/31/2013

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My daughter also is in the 3rd percentile and has severe adhd. The mood changes were positive mood changes. She had horrible mood swings and was extremely irritable. She still can be irritable but nothing like she was before she started her injections. I was terrified of the injections and she was as well. A company called growth solutions sent a nurse to our house and walked me through the first one. It went way better than expected and isn't nearly as bad as either of us expected. The needle we use is very small and I imagine it'll be the same needle they choose for your son's injections. I was told to expect growing pains but if it was any severe pain to contact the doctor immediately. She has had slight knee pain but nothing that she found to be bothersome. I haven't heard anything about physical therapy in anything I've read so maybe there was something else with the other case. My friends daughter had scoliosis but it was severe so they had to do surgery. If your son's isn't too bad you may want to ask about a back brace to help limit the curvature during the first year. Or at least ask the doc if it would help. We go for her first follow up feb 25 and I have a ton of questions for the doctor.

Jamie - posted on 01/30/2013

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He has growth hormone deficiency too. He is 3rd percentile for height, wears an 8, he is 60 lbs, and also no signs puberty. I didn't know to expect any mood changes! He also has adhd- so only I sure hope its positive changes if it all! He also has a slight curve in his spine- scoliosis. I am also concerned that with the typical sudden growth caused in the first year of meds his curve may get worse. He will be on omnitrope. I am terrified of doing the shot wrong. I also ran across another mom who posted something about the pain from growing and needing physical therapy- again, not something I knew to expect. But her child may have other conditions that she didn't mention. I am so glad to be able to discuss this with someone else. I have searched for other parent's stories so that I can know what to expect, but not much look.

Stacey - posted on 01/29/2013

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My daughter is also 10. We've been doing the shots for about a month and a half. She's taken to the routine without too much fuss since the needle is so small that we use. She is on tev tropin, is that the one you guys will be using? I noticed positive mood/behavioral changes almost immediately (within a day or so of first injection). Unfortunately my daughters is fairly bad. Since I'm short I couldn't get her doctors to take me seriously when I brought up my concerns. So she's now 10 and just now getting what she needed all along. She's only 45 pounds and just now getting out of size 6/6X and hadn't been showing any beginning signs of puberty that she should be showing. Does your son have growth hormone deficiency or something else? She was tested for several other growth disorders before the final diagnosis.

Jamie - posted on 01/29/2013

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My son, 10, will start his shots this week. I don't believe his is a severe problem, but enough to need the therapy.

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