Today, Anais had her first appointment with a pediatric endocrinologist, Dr Dewan, here in Las Vegas. It actually went really well and Jeff and I really liked him. We were hoping he would be open-minded about Human Growth Hormone and Achondroplasia since this seems to be a pretty controversial matter in the LP community. Much to our surprise he was really knowledgeable about achondroplasia. He said that there haven't been a lot of studies about the effect of HGH on achondroplasia but also said that since 2005, recent studies have shown very positive results. He felt that HGH treatment would definitely help Anais. He said that we should start treatment when she 2 years old since the growth from birth to 2 is mainly nutritional and not hormonal.The first 2 years of treatment are apparently the most effective ones. Anyway, we were pretty pleased and really feel good about Dr Dewan.
We want to do this for Anais because we feel like we should give her all the chances we can to give her a more "normal" life and more independence. I honestly don't really understand why this is so controversial in the dwarf community. We are not trying to "change" her, we are just trying to be the best parents we can and really do what we feel is best for her. I do understand that we can't all agree on how to raise our children, even when it comes to health issues.
{Christmas 2023}
4 months ago
9 comments:
I think it's important to do what you feel is best for your child and not worry what others will think. You will find many people in the LP world that are very set in their ways and not opting to look at the other side. I know this is still experimental bc I have spoken with our orthopedic doctor about it, but at least 2 years ahead of your decision there should be more information about it out there! Good luck!
I think very much like you-I probably will not do the HGH on Preston but I have visited with Dr. Paley for ELL down the road. Preston has had no complications with achon other than the never ending winter colds and ear tubes and his growth is on the high end of the charts. I have researched extensively and still have not made any final decisions-but when told he can gain an extra 12-15 inches, there is some incentive to look into it.
I still have many years to think about that, but I believe that each parent has the right to choose what they want for their child.
I am glad that your appointment went well. I am with you, I am not sure why it is so controversial either. To me it is a matter of helping your child overcome some of the hardships she will be faced. NOT trying to change them into something different.
I just made it to your blog - what a beautiful family! My son Trace also has achondroplasia, and we have a daughter, Taylor. Like Kim, I am also entertaining ELL, especially for Trace's arms, to make his life a little easier, and safer.
From what I understand, some of the controversy actually stems from proponents of the GH Therapy insisting that it be used on any patient with a short-stature diagnosis, whether or not any studies support the treatment. From what I've heard, although I've never been assaulted this way myself so I take it with a grain of salt, some of the supporters of GH therapy actually believe that you are damaging your child by not giving them the treatment, which in turn provokes a very hostile reaction from the parents who have decided against using GH.
A very good friend of mine was actually diagnosed with GHD or growth hormone deficiency, and with GH Therapy ended up at a much more average height (5'3", which ain't tall, but is much taller than 4'). On the other hand, all the studies I've read so far about GH therapy for achondroplasia, doing the same research for Caitlin, show gains in the short term, but no real additional height in the long term - meaning that they grow faster as adolescents, but that the final height still ends up being around the same. Now I'm not a doctor, although I was a pre-med student at some point, so while I understand what I'm reading pretty well, I may not have access to some of the newer studies that your doc may have - and one of the primary weaknesses in the studies that I was reading was that there wasn't enough long term data...
At this point, we've decided against doing ELL for our Caitlin, for a couple of reasons - one of which is seeing a teenager who'd had ELL who had been very athletic pre-treatment, but now a few years later was still not back to where he had been in strength. I don't know if that was an atypical situation, but it certainly didn't make the procedure look attractive to us!
Anyway, the most important thing is to do what you think is right, no matter what anybody else thinks. You are the best advocate for your daughter - you know her better than anyone else, and you have her best interests at heart more than anyone with or without an opinion does!
I went to the same appointment and went through the same internal debate. In fact http://howlifeismeasured.blogspot.com/2007/07/human-growth-hormone.html is the link. Anyway, through this whole journey, only you will know what is best for your child. We were actually kinda of lucky, our endocronologist told us that HGH wouldn't really do anything for Owen so we didn't even have to make a decision. Good Luck with whatever you decide. I know you will have no shortage of opions as to what you should do but it's more important to know where to go for support!
Love the blog! (I added to mine)
Cat
Alex, feel free to add us to your blogroll, I'll add you guys to mine as well!
Alex, You have always been someone I have looked up to. You are always thinking of your family first. Your one of the best parents I have ever seen!
With that being said, I know your intentions for Anais are good.
I absolutly would do this for my child. I think the more independance and freedom you can give a person is only a good thing.
thank you Sarah!
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