I'm curious to know if there are kids in this community who are on growth hormone therapy to deal with short stature/ delayed bone age? If so, I'd be interested to hear about your experiences with it. (Has it been effective? How big a deal are the injections?)
If you've considered it for your child but decided not to go that route, I'd also love to know what the deciding factors were for you.
Thanks!
I did consider it with Mia when she was a year old and went to go see an endocrinologist. She commented, rather rudely, that there was no point in growth hormones until we knew if she was going to walk. At the time I didn't like her response but now that she is three and still not even close to walking I am glad we did not go with the growth hormones because we still carry her everywhere. She weighs about 25lbs and I am glad she is not any bigger until she starts to move around on her own. I know she will but I think we have quite a ways to go until we are there!
When it became obvious that Carson wasn't growing like other kids, people (random acquaintances, mostly) started asking us if we'd considered it. We hadn't...so we talked about it and realized it felt like we'd be saying, "you were made wrong, being short is bad, you need to be FIXED!" His pediatrician would have signed off on it if we'd pushed, but since it wouldn't change his delays, only his size, she didn't see the point.
A friend's son has received the treatments to help with his hypoglycemia, and it (maybe) worked, but it's compounded his other troubles so much she insisted that if Carson didn't NEED it that we should run the other way if anybody suggested we do it voluntarily.
I would be interested to know if growth hormones have helped anyone. As we see Kendall grow, it appears that she is going to be who she is going to be. I know that they are available for a reason and I am sure that they work to some degree, but our kids are different and no matter how much we feed Kendall, she can only tolerate so much. I believe that they are meant to be what they will be and I'm not sure that drugs will make them that much bigger/taller. Would love to hear otherwise!
This is a really interesting discussion. When (our) Mia was undergoing her initial genetic screening the doctor advised that he suspected she may have Turner's syndrome and talked to us at some length about the associated short stature and how this would be treated with growth hormone at some point in the future.
When the results came back and it transpired she actually had WHS I asked our paediatrician again about whether HGH would be on the cards for Mia further down the line. While he did not rule it out, his response was that it is not something that would be routinely prescribed for children with WHS. That's how it is in the UK anyway. The main reason being that physical stature is likely to have less of an impact on their physiological and social development when compared to more able children, such as those with Turner's. I suppose the subtext of this could be interpreted such that a child with a moderate to severe learning difficulty, such as is typical with WHS, is somehow less worthy of the treatment than a child with more 'normal' development - but that is not how I see it.
As with any medication, supplement or procedure; growth hormone comes with its own not inconsiderable set of possible side effects, and it is every medic's duty to ensure these risks do not outweigh the potential benefits. So, while Mia will almost certainly always be tiny when compared to her peers, as long as this does not impinge on her general well-being we are more than happy to delight in the revelation that the best things most definitely do come in small packages!
In case anyone is interested in learning more about this growth hormone question, I thought I'd post an update...
Within days of posting my original question about growth hormone therapy a couple months ago, I found out that my daughter was approved for it by our insurance company, and we decided to start her on it and see what would happen. (The approval process went faster than expected -- our endocrinologist did some research and found 16 previous cases of growth hormone having been used for WHS kids, with good results, and he was able to share this info with the insurance company.)
We went back to the endocrinologist today for the first time, and the growth benefit is clear. Her "growth velocity" (rate of how many pounds/inches she's growing per year) doubled for both height and weight. Of course, she's still below the regular growth curve, but it definitely seems like a good trajectory... starting to catch up.
What I'm most excited to share, though, is not about bone growth or height or weight. When she started in on the growth hormone, within two weeks we noticed a marked improvement in her muscle tone. She's just a much more solid kid - you could feel it when you picked her up. Four weeks after starting on it, she began walking.
And, until today, I didn't realize these things were connected but apparently they are... she also stopped vomiting and her reflux improved shortly after she started the growth hormone. The doctor today said that's because the sphincter at the top of the stomach is also a muscle, which is benefitting from the increase in muscle tone as well and therefore is better able to keep the contents of the stomach down.
Although I understand that it may not be for everyone, my conclusion at the moment is that this was a good call for us. In terms of the growth/height dimension, I definitely am not doing this because I want a tall kid (I'm pretty short myself!). However, I would love for her to be tall enough that her height won't be a barrier to functioning in the adult world someday (sitting in a regular chair, driving a car, etc.). At the moment, though, I'm happiest about these side benefits of the increase in muscle tone, and that feels like enough to make the nightly injections feel worthwhile!
(Now, we just have to keep waiting for those teeth! The doctor today assured us that they'll come when her bone age matures some more... but she's 21 months already and still no sign of them. Argh.)
Thanks for sharing you experiences Rachel, sounds like you're seeing some really encouraging results. We have an endocrinologist appt some time next month and I will definitely be asking him/her for their thoughts on HGH. Please keep us posted!
Thank you for very important information regarding growth hormone.
We would like to talk about the GH therapy with our genetitian, and then maybe with an endocrynologist. As far as we know, now such therapy is provided for any WHS child in Poland. We have searched for relevant literature, but with no success.
So we will be very grateful if you could let us know about any resources regarding growth hormone therapy in children with WHS. The information Rachel mentioned (the 16 cases) would be especially helpful.
We'd like to be prepared for the discussion with the doctor, as we guess it could be a difficult one, as the therapy is for sure expensive, not routine and not easily accessable.
If you wish to reply, our email is: iwplaszewska@wp.pl
Our geneticist brought up growth hormones but said he needed to do more research on it. I second Iwonas message ^.^ can u send me more info on the case studies too? Thank you!!
Hi Rachel. Thanks so much for sharing. We're very interested in the possibility of GH therapy for our daughter Ellye but I'm sure we'll find ourselves in a similar situation to Iwona as we live in Italy. We would also be very grateful if you could send us some information on the 16 cases. In the meantime, we'll show this thread to her doctors and see what they think.
My email deborahmcewen@hotmail.com
Wow - I wish I had actual data that I could just forward along to everyone! It sounds like this data is confidential and unpublished, and I never actually got to see it. However, it's clearly available in some form to doctors who request it -- so I can definitely check with our endocrinologist about sharing some of this data directly with other physicians. It would be great if we could simplify this process for our doctors, wouldn't it?! I will do that and report back...
My understanding (and this is a parent perspective, so I'm going to hope that I'm getting this mostly right) is that the drug companies which manufacture growth hormone ask patients to voluntarily turn over their growth records for research purposes. From their studies, you can see what the benefit of the growth hormone is (in terms of growth rate), and compare various populations within the studies. From what our doctor said, the WHS patients benefited slightly less from growth hormone than the general growth hormone therapy population (which he said makes sense because the issue in WHS isn't a straight growth hormone deficiency), but the gains were still significant enough to demonstrate a clear benefit. There are certainly limitations to the data from these studies -- for example, if a patient stops taking the drug, you wouldn't necessarily know why (because it didn't work? worked so well they didn't need it anymore? had side effects? switched brands? etc). Still, this was helpful data for us to have... if only to make the case to our insurance company that it would be a worthwhile investment to make!
Anyway, I'll try to get in touch with my daughter's endocrinologist and promise be in touch again soon. Glad to know that this could be helpful for others...
Thanks Rachel!! Spoke with my daughters endocrinologist and she seems quite keen on receiving the studies!! As I am too...^.~
If it is all for professionals to view only, I can pass my drs contacts to you to pass to your drs.
How old is your daughter now? Anyways, so happy to hear she's doing sooo well!!! ^.^
Dear Rachel,
thank you very much for your very comprehensive and detailed message. We have been searching for evidence on GH therapy in WHS but it looks like there is almost nothing published. We saw the genetist, who diagnosed Kinga. He was interested in the idea, and encourages us in searching, as evidence (even personal communication from specialists) is the condition for persuading the NHS experts to introduce the therapy. We would be very grateful, if you were so kind as to share the information yoy access. Of course, if it is confidential and professional only, we will send the specialist's address and / or ask the physician for a direct communication with his peer.
We will let know as soon as we access anything relevant.
It is great to know your daughter is doing so well!
Best regards,
Iwona and Maciek
Hi!
Sorry for being overly interested ^.~ but was wondering how things are coming along with the growth hormone therapy. Still hoping we can get the case study information too...our drs are hoping to get the info too! Thanks again Rachel!
My son Aldrick 24,was on growth hormone for 1 yr...according to his endocrinologist at the time it would increase his muscle tone, and also help with the bone density,that was the only reason we placed him on it, she also said he would grow and help him with puberty.The 30 ga.needles are just like the diabetics use for their insulin..they did not hurt him but had bruising in the different areas that I applied them. He had to take 1 twice a day.Morning and evening, after 1 yr.the endocrinologist we were seeing left the practice and therefore started seeing another pedi endocrinologist which tested his muscle tone and his bone density. The results were still the same as when he first started, his osteoporosis was the same,and there was no growth and never went thru puberty either.So,she said it was useless to continue the therapy.She stated we could continue on GH therapy but the outcome would remain the same,GH would not alter his genetics disposition.
To be honest I have never considered growth hormones, even though our daughter Ariarna has a short stature, she attends a special school for children with special needs & I feel society should just accept her the way she is :-)
Although I can certainly understand those that wish to do so, if doctors say that a child with WHS would benefit from GH it's worth a try, as everyone is different :-)
Hi Amariah was referred by her endocrinologist twice for growth hormone therapy but because her boneage (sp) came back normal for her age she was never given the injections. I am happy because although she is still considered "petite" for her age she is very big and healthy looking. I literally have to buy tons of clothes because nothing fits...ever. She is 12 yrs old and wears size 14 in kids clothing, size 1 in shoes and size 14 in kids or small in adults clothing. Let the children grow, I never thought she would get any bigger but she has and its amazing.
Taylor does not take any growth hormones. Our visit today showed Taylor on the normal growth chart at 38.8 inches. However, we are checking into the possibilty of early puberty and the doctor thinks that could be why she has grown so rapidly over the last 6 months as far as height goes. She is still not on the normal chart for weight.
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