Endocrinology/Human Growth Hormone anyone?

[2boyzmama]

Connor is finally getting a referral to endocrinology due to his small stature and slow growth. Anyone been there?

His syndrome is known to cause small stature and low weight, however he is on the smaller side of even his syndrome growth charts (varying between 20-35%) and he doesn't have any of the serious cardiac or digestive issues that are common. No heart surgeries, he's not on a g-tube. He does have primary immune deficiency that leads to repeated illness, but he's only been hospitalized a handful of times, significantly fewer than some kids with his syndrome.

SO...we all expect that he should be a bit bigger than he is. (just turned 3, he's 24.5 pounds and 33 inches tall)

Growth hormone deficiency is sometimes seen in his syndrome, so the geneticist finally put in the referral. His appt is May 6th (my birthday!).

What should I expect? I thought I read that the only way to do growth hormone tests is an overnight hospital stay with blood draws every hour overnight because growth hormone is secreted in your sleep...is that right? I need to research this again.

Is anyone's kid on growth hormone supplements? Did you research it much before starting it? Anything to pass on? Positives/negatives? Side effects? Results??

I've got 8 weeks to research this...I always like to go to these appts informed so I'm not blindsided!

[VisionaryMom]

My cousin (now 17!) has Turner's Syndrome, which means she produces no growth hormone. She started taking the HGH injections when she was around 6 and has taken them in various forms for years. There are some concerns. She did have open-heart surgery as an infant, and the biggest worry was that the fluid around her hard would get too thick (apparently this sometimes happens as a result). She went in for tests pretty frequently for a while to monitor how it was doing. Overall, though, the experience was positive for them. She's around 5'3" now and no longer taking the hormones.

[JavaJunkie]

My son his on HGH therapy. He doesn't produce enough growth hormone, with no underlying cause/syndrome. It does run in the family, however. His aunt also received HGH therapy as a child.

His testing required a few hours in the hospital, but they did the testing during the day. He was given a medication that stimulates growth hormone production. Then he had blood drawn at 30 minute(IIRC, perhaps it was 60 minutes? geesh, I can't remember exactly!) intervals over a few hours time. He had a hep lock so that he didn't get stuck anew each time.

He's been on the HGH therapy for a little over 2 years now, and has grown an average of about 4 inches each year. We have been AMAZED. His growth took off right away on the treatment, and hasn't let up. He hasn't experienced any negative side effects, either. He doesn't even get much in the way of growing pains, which surprises me.

My baby is needing to go to bed, but I'll be back on tomorrow. I'd be happy to share any more information. Feel free to ask any questions you may have.

ETA: I will go into more detail about what I learned when I researched HGH therapy tomorrow. There can be side effects. Our son was 10 when we started, and we definitely shared the negatives. We left the ultimate call up to him. His treatment requires daily shots, BTW...sometimes the treatment is only 3 or 4 shots/week.

[2boyzmama]

Thanks guys!!

I will be researching this more today.

Connor is small, below the growth charts for sure, but I just don't know how I feel about it, you know? First of all, the growth charts for his syndrome show that significant catch-up growth sometimes occurs around ages 5-6, and then these kids are just "small side of normal" vs "below the growth chart". So I might be tempted to wait until that age and see if he has any catch up growth then.

His RATE of growth has been consistent, he's always been on about the same curve, it's just that his curve is below the chart.

What does HGH do for weight? Right now his height and weight are very proportionate. I don't want him shooting up a couple inches if he doesn't gain any weight with it, you know?

[JavaJunkie]

Originally Posted by 2boyzmama

Thanks guys!!

I will be researching this more today.

Connor is small, below the growth charts for sure, but I just don't know how I feel about it, you know? First of all, the growth charts for his syndrome show that significant catch-up growth sometimes occurs around ages 5-6, and then these kids are just "small side of normal" vs "below the growth chart". So I might be tempted to wait until that age and see if he has any catch up growth then.

His RATE of growth has been consistent, he's always been on about the same curve, it's just that his curve is below the chart.

What does HGH do for weight? Right now his height and weight are very proportionate. I don't want him shooting up a couple inches if he doesn't gain any weight with it, you know?

My son has always been on the thin side. HGH therapy is supposed to reduce body fat, but that hasn't been an issue with us. DS is still on the thin side, but he is gaining well in proportion to his gains in height.

He was always short and his growth was never "normal". But over time, he steadily dropped lower and lower on his curve--he stopped growing on his own little curve. He hadn't been on the chart for years. He's on the chart now, but still under the 5th percentile. Just him getting back on the chart was an amazing thing, though! The fact that we can now measure his height in INCHES for a year's growth, vs. centimeters, is incredible.

Also, my DS is 13. We started therapy when he was just shy of turning 11. His bone age was 9 the last we checked. This means we have a decent amount of time for HGH therapy before his bones fuse.

As you probably know, HGH therapy isn't exactly a popular choice depending upon whom you ask. LOL But each family needs to decide for themselves. To us(me, dh, and ds), the benefits were worth the risks. Luckily, ds has had no side effects. Joint pain, trouble sleeping and headaches are very common. He hasn't experienced any of those. The serious side effects(diabetes, and abnormal organ growth which can cause heart problems, etc...) are seen when HGH therapy is given to a child that produces a sufficient amount of GH on their own. So that is not a worry for us, period.

Anecdotal, but ds has been incredibly healthy since we started the HGH therapy. He never had severe health problems, but he did have chronic sinus infections. We did all the allergy testing(FOUR times, because the doctors couldn't believe that he didn't test positive for allergies! LOL), we eliminated common allergens from his diet(milk!) and environment anyway. He had surgery for sinus polyps when he was 6 years old--the youngest patient his doctor had ever done that surgery on. We didn't choose surgery willy-nilly either, believe me. Anyway, he continued to have sinus infections after the surgery, but getting rid of those polyps and enlarging his sinus cavities helped lessen the frequency a bit and enabled better drainage. Before surgery, he had pockets that were completely blocked and filled with constant infection. So I don't regret doing the surgery, as difficult as that was for him. But since starting on the treatment, he has had ONE sinus infection(which actually occurred last month). So yes, this is quite possible completely coincidental...but giving him a hormone that he was not producing enough of on his own definitely hasn't hurt him, at least.

Feel free to ask any other questions you may have!

[VisionaryMom]

Originally Posted by 2boyzmama

Connor is small, below the growth charts for sure, but I just don't know how I feel about it, you know? First of all, the growth charts for his syndrome show that significant catch-up growth sometimes occurs around ages 5-6, and then these kids are just "small side of normal" vs "below the growth chart". So I might be tempted to wait until that age and see if he has any catch up growth then.

His RATE of growth has been consistent, he's always been on about the same curve, it's just that his curve is below the chart.

He does sound small, but you know, my son wasn't that much bigger. Around 2, we were having lots of medical issues and were on special diets, and his growth just kind of stopped. That concerned our docs more than him being small, so I may be tempted to do what you're considering and hold off for a bit.

[half-pint]

My son has been on GH since 18 mo (now 3.5 years old) due to Prader-Willi Syndrome. We have had no negative side effects. It has improved his muscle tone greatly and his gross motor skills have improved. Don't know if this is an issue for your son but this can be a positive side effect.

Another issue the the cost. DS's dosage is fairly high - i don't know what is the average dosage would be for your son. In general, it is pretty pricey stuff (our dosage would be in the $900 a month category) Some people find that if they have even a 20% copay it can be a burden. Insurance companies do not like to pay for it but often the drug companies - such as Pfizer - have a bridge program where they will pay for the drug while you and they battle insurance. There is a group called The Magic Foundation which has various listserves on yahoo that can guide you through some of the ins and outs of GH treatment and dealing with insurance companies.

Compliance with the injections can be a problem - we are having some trouble lately but there are suggestions and techniques to make it easier.

Good luck! The endo should be able to explain it all better than I can.

[urchin_grey]

Bumping because I'd like to know how your appointment went!

We are looking into this ourselves and I keep going back and forth about the hormones... But DS is 25lbs, 34in and he just turned 5.

[2boyzmama]

Hi Urchin!

The appt went well. Thanks for bumping this actually, it reminds me that I need to call the dr to get the results of his bone age scan.

The dr had read his whole chart and reviewed his labs before we got there. We talked about his history and the prevalence of gh deficiency in his syndrome.

The dr basically said that all of his labs so far have been normal, so there's nothing that suggests a deficiency. His growth has been consistent, even while it's been really low (in other words, he has been on the same percentile line, not falling off significantly. He's been between 0.66%-2% since 9 months old) The only test that hadn't been done is bone age, so they did that at his appt. Assuming the results of that are also normal, he's going to just monitor Connor.

So we have another appt in 6 months, basically just to check his height/weight. He also wants me to ask the geneticist for any new publishings on gh deficiencies just in case there's anything new that he doesn't know about.

By the way, this dr was fantastic, he came in the room, saw Connor on the floor reading a Star Wars book, and immediately sat down to read the book to Connor! Before he even introduced himself to me! It was nice to see a dr spend the extra time reading a book to my kid, you know? There was no rushing at all, he took the time to play with Connor and answer my questions. It was great!

[2boyzmama]

The Endocrinology nurse called back, Connor's bone age is 1-2 standard deviations behind, which suggests a constitutional growth delay, which is what the dr suspected. He said that at Connor's age they expect to see 43 ossification centers, and Connor had 35.

So, with all labs normal, bone age behind, and his growth steady, it appears there's no growth hormone deficiency, and he'll just be a slow grower.

[AndVeeGeeMakes3]

Originally Posted by 2boyzmama

The Endocrinology nurse called back, Connor's bone age is 1-2 standard deviations behind, which suggests a constitutional growth delay, which is what the dr suspected. He said that at Connor's age they expect to see 43 ossification centers, and Connor had 35.

So, with all labs normal, bone age behind, and his growth steady, it appears there's no growth hormone deficiency, and he'll just be a slow grower.

, right?

[2boyzmama]

Originally Posted by AndVeeGeeMakes3

, right?

Yes, I think it is good.

I mean, it's good that nothing is "wrong", but this is one thing that, if it was "wrong", then we could "fix" it, you know? It seems that so much is like that for Connor...something is not quite right, but not wrong enough to be fixed.

He has hearing loss...we can't aid him.
He has a palate issue...we can't correct it.
He has pulmonary issues...we can't correct them.
He has gastro issues...we can't fix them.
He has an immune deficiency...it's not the type that can be supplemented.

See a trend??!

But really...I do know that he's very lucky, all things considered. He's doing really well, and is very happy/healthy.

[Cinder]

We went through all of the tests with Janelle when she was 3 (3 years old, 21lbs, just below 30" tall...which looks to be wear Travis will be as well in 3 months since he is 19lbs and around 27"-28" right now)...her HGH was normal, they said we could still try growth hormone, sometimes it works even if there is no reason for the growth delay, but it was like a 10% chance of it working, so we decided no, we didn't want to try it. We did end up during the same round of testing finding out she had severe obstructive sleep apnea, so we took out her tonsils and that helped a ton, she got into the 3rd% for height at 4, and now at 7 1/2 is in the 25th% for height (but didn't get to the 3rd% for weight till 7 years old, and now at 7 1/2 years old is off it again)... But, thus far, Travis shows no signs of sleep apnea like she did, so that's not a good solution for him.

We also have the issue of both Kincaid and Travis have hearing loss, and we know Kincaid's can't be helped, still going through testing with Travis...but most likely the same thing...auditory processing disorder, fails all hearing tests, Kincaid is obviously to all his teacher's/therapists/doctor's doing more lip reading than actual listening now at 6, and Travis has 1 word at almost 3, but about 30 signs with new ones every day...

It would be nice to be able to fix something and we don't have any where near as may issues as you are dealing with.