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Forum -> Children's Health
Growth harmone deficency
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amother


 

Post Wed, Jan 27 2010, 8:08 am
My child is short. the harmone levels are low. stimulus test shows that child will respond to shots. wwyd???????????????
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Yocheved84




 
 
    
 

Post Wed, Jan 27 2010, 8:30 am
Be very careful with growth hormone injections! Get a true growth hormone test performed over a few-week period. Speak to a qualified endocrinologist. I have seen too many children develop or mimic symptoms of acromegaly as a result of the injected growth hormone (elongated jaw, elongated hands, issues with male bodily development) etc. Growth hormone levels oscillate. Further, this has to be strictly monitored.

How low is the level?

RS.
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amother


 

Post Wed, Jan 27 2010, 8:47 am
I went to 2 endo. both said he needs to be on gh shots. I saw the protien 1 growth harmone to be very low. the normal level is 115 - 178 my child had 85. after giving him a week of daily shots the numbers came up. In addition he grew in those 4 weeks as a result. His growth chart is way below the 0 percentile.
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Yocheved84




 
 
    
 

Post Wed, Jan 27 2010, 9:04 am
amother wrote:
I went to 2 endo. both said he needs to be on gh shots. I saw the protien 1 growth harmone to be very low. the normal level is 115 - 178 my child had 85. after giving him a week of daily shots the numbers came up. In addition he grew in those 4 weeks as a result. His growth chart is way below the 0 percentile.


It's not any of my business, but I would encourage you, if you're in town, to go to the Children's Endocrinology Dept @ Columbia-Pres (don't know if Daisy Chin is still there). There are so many endocrinologists out there, many good and many not so great. It seems like you've done a lot of work already, but growth hormone is something that has to be monitored very closely...and the ramifications of it (if administered in too high of an amount) aren't noticeable until after some of the irreversible side effects have taken place.

Those levels do sound low, but you don't want huge change to quickly...

Please, I'm not trying to scare you or anything, but am just nudging to make sure you get the best person possible to monitor him. I hope he feels better soon, and it seems like he already is. Smile
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natmichal




 
 
    
 

Post Wed, Jan 27 2010, 10:12 am
My son started GH injections 2 months ago, after we spend almost 2 years debating if we should do it or not. He was born very premature and never "Caught up" the height he was supposed too + started growing too slow to top it off (at 6.5 he has the height of his just 5 y.o sister). I know other kids his age who are his size, but after thinking it through a lot, we decided to go for it, for him.
I'll be honest- he hates the shots and we worked out a rewarding chart (one sticker a shot, one card every 10 stickers and he can 'buy' things from us with the special cards!)
BUT we went to the first check up 10 days ago, and he saw he had gained 1 cm (and 1 kg too- yay!) .. You should have seen how proud he was. He went to school the next day with a note to the teacher and shared it with the whole class.
While he had NEVER complained about being different before we started the shots (he also has glasses on top of being tiny, and some other issues) and we as parents definitively never brought it up , he has being talking A LOT about how he is now starting to look like a kid his age height wise, and has been putting much more effort in behaving like one of them (unfortunately including hitting when he's mad at something...).
His self esteem is going uphill. I never though he had a problem with it to start with, but now I see the difference I understand he was very good at 'hiding" certains things.
Again- this is our case and you have to be 100% sure your child needs it. Our sons will probably only need the shots for 3 years (just to catch up with his growth) and that's also something to take into account. We decided that ensuring our son's self esteem (not even mentioning chances for shidduch when he gets to that stage) was just worth it. We still have a looooong way to go , but so far, b"h , we're happy with our decision.
Good luck
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amother


 

Post Wed, Jan 27 2010, 10:22 am
maek sure to only give synthetic!!!! not human
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amother


 

Post Wed, Jan 27 2010, 11:58 am
op here. my son is 7.5 years and looks like a 4.5 yr. old. the bone age matured very quickly in the last 3 years although he did not grow much. he has 2 issues 1. he was born short at full term (weight 8.1 lbs and height of 18 inches. 2. he has a growth harmone diffieciency . I will call columbia. please give me the #. I greatly appreciate it, as I did not decide which dr. to use. thanks.
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shiradye




 
 
    
 

Post Thu, Jan 28 2010, 6:43 am
We are giving our 11 y.o. DD growth hormone. Some of the suggestions other posters have said are clearly coming from people who have not been through it. You CANNOT get GH w/o a prescription and supervision of a ped. endo. Here in Israel, there is a very long process to go through before receiving it, including a GH committee which has to approve (that is like getting 4 second opinions).
AFAIK, no one gives human GH, only synthetic. And the stuff is super expensive, kupat cholim pays all $2,000+ a month for it, and we pay a co-pay of $50 a month.
There is much more to giving GH than mere height, the endocrine system, heart and lungs are also affected. Please go online to The Magic Foundation for more info.
I also read a Binah article about it, which I scanned & I can email it to you if you want.
I feel confident about the decision even though we only started 2 months ago, and haven't yet been officially measured.
To natmichal, maybe your needles need to be thinner so it hurts less. For DD, it doesn't hurt at all when we do it in her stomach area.
B'Hatzlacha, please keep us updated.
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natmichal




 
 
    
 

Post Thu, Jan 28 2010, 8:00 am
shiradye wrote:
We are giving our 11 y.o. DD growth hormone. Some of the suggestions other posters have said are clearly coming from people who have not been through it. You CANNOT get GH w/o a prescription and supervision of a ped. endo. Here in Israel, there is a very long process to go through before receiving it, including a GH committee which has to approve (that is like getting 4 second opinions).


Actually once we went to the endo, did all the tests and decided to go for it, it went pretty fast- maybe because ds was born at 26 w with IUGR (and the rest...)- we got the ishur from the kuppa within a week. That's one more of these times where I'm thankfull that in Israel they take care of kids like mine!

shiradye wrote:
I feel confident about the decision even though we only started 2 months ago, and haven't yet been officially measured.


ds had to go for a check up exactly once month after we started, and we have to go again one month later...

shiradye wrote:
To natmichal, maybe your needles need to be thinner so it hurts less. For DD, it doesn't hurt at all when we do it in her stomach area.
B'Hatzlacha, please keep us updated.


We use the smallest needles available (6mm), but ds is extra sensitive. We tried getting to the stomach but he so ticklish and so thin I can't grip anything - so we're left with arms and legs. Maybe I'll try offering to do the stomach again (also as from last week he refused to even try)

Thanks for good wishes
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shiradye




 
 
    
 

Post Thu, Jan 28 2010, 8:45 am
Nat, which doctor did you use? We are using Dr. Hirsch.
DD did 2 blood tests which were torture, clonidine and glucagon. I am not familiar with the test your son underwent.
Probably your child got it quickly, and had different tests because of his young age. DD makes some GH, just not enough.
Let's keep in touch!
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natmichal




 
 
    
 

Post Thu, Jan 28 2010, 8:59 am
Shira- His dr is dr Topper- who is also a regular ped. (and hence has torim within a week- not 6 months!)
Ds had an r-ray of hs hand taken, various blood tests, stool test (to make sure it wasn't a GI problem!) and then clonidine which was "not nice" to say the least (he had the saddest face for four hours strait and he's a very smiley kid usually).
After that, it was up to us to decide if we wanted to give him the Gh or not, and then ask for the ishur from the kuppa.
Whole process took around 6 months- partly because we did not want to rush, and partly because we had a long wait for the clonidine test.
For sure- keep in touch!
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shiradye




 
 
    
 

Post Thu, Jan 28 2010, 9:26 am
Michal, We did all those tests too,--bone age, clonidine & glucagon, and it also took us 6 months to get it going. But it took 4 months to see the dr. to begin with, even though he is also a regular pediatrician. We saw him for 1 1/2 years before he recommended the tests, getting measured every 6 months. When her growth slowed down, we did more tests. Did Leah the "nurse" also come to your house? You use the Nordipen?
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amother


 

Post Thu, Jan 28 2010, 9:33 am
op here. If we decide to give our son the shots, we will give something that is given through a new device. a pressure machine. It actually works with pressure. not a needle. less painful. it's called click2. maybe you can find a link on line. we have affinity through medicaid and in our case they will pay for this.
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amother


 

Post Thu, Jan 28 2010, 9:36 am
http://www.justgrowth.com/me/e.....x.jsp
actually this is the link
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natmichal




 
 
    
 

Post Thu, Jan 28 2010, 9:39 am
shiradye wrote:
Michal, We did all those tests too,--bone age, clonidine & glucagon, and it also took us 6 months to get it going. But it took 4 months to see the dr. to begin with, even though he is also a regular pediatrician. We saw him for 1 1/2 years before he recommended the tests, getting measured every 6 months. When her growth slowed down, we did more tests. Did Leah the "nurse" also come to your house? You use the Nordipen?


It took just a week to see the endo, and since our reg. ped (who is a development ped and has experience with preemies) had been tracking ds' growth for over 1 1/2 years every 2-3 months, the endo sent us for tests right away.
We use the genotropin pen and Sabina came to our house.

OP- the pressure machine sound really nice but I don't know if we can get it here.I should try and check even though as is the kuppa is paying so much of the expenses - I doubt they'll pay for something esle if it cost even more...
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natmichal




 
 
    
 

Post Thu, Jan 28 2010, 9:48 am
amother wrote:
http://www.justgrowth.com/me/en/sitemap/sections/devices/cool_click/cool_click_FAQ/index.jsp
actually this is the link


http://www.genotropin.com/cont......aspx


this is the site for what we're using... it seems very similar. Your pressure pen does involve a small prick too. The only difference I see is that the word "needle" does not appear, and you have a slightly smaller entrance point than we do with the geno. pen.

Am I right?
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amother


 

Post Thu, Jan 28 2010, 9:51 am
I don't know.
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shiradye




 
 
    
 

Post Thu, Jan 28 2010, 10:12 am
We use this one:
http://www.novonordisk.com/the.....n.asp
I never heard of the pump either.
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natmichal




 
 
    
 

Post Thu, Jan 28 2010, 10:20 am
shiradye wrote:
We use this one:
http://www.novonordisk.com/the.....n.asp
I never heard of the pump either.


it looks just like the geno.pen... just the one we use allows to switch the panels so ds gets to choose a different color/pattern for the injection... makes him happy , so why not?
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shiradye




 
 
    
 

Post Thu, Jan 28 2010, 12:32 pm
natmichal wrote:
shiradye wrote:
We use this one:
http://www.novonordisk.com/the.....n.asp
I never heard of the pump either.


it looks just like the geno.pen... just the one we use allows to switch the panels so ds gets to choose a different color/pattern for the injection... makes him happy , so why not?


We didn't get to choose which pen to use, the doctor prescribes, we buy. DD is 11, she almost does the whole shebang by herself and at her age, she doesn't need the different panels to make it exciting.
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