Friday, September 16, 2011

Haley's Endocrinology appointment

Haley had a follow up appointment with the endocrinologist today.  After her appointment back in May 2011 with this endocrinologist, she had some blood work and a hormone stimulation test done to see if she was going to need growth hormone medication.  Well the results from those tests were all normal, but the doctor is still recommending her to go on daily growth hormone shots.  Haley's rate of growth in regard to her length has been consistently way below the 5% percentile on the growth chart (see her chart below).  She is very short and small for a 2 year old.  Though I'm so happy that she has finally made it to 20 pounds!!!  The doctor told us that children who are born so prematurely such as Haley usually need the growth hormone to help them catch up despite having normal growth hormone levels.  The doctor feels that Haley will benefit from the growth hormone therapy.  We are nervous about it since it will require daily shots until she reaches puberty.  We do want Haley to be able to reach her height potential so we are going to move forward with the process of starting her on the growth hormone shots.  If any of our blog readers have any experience with growth hormone therapy and have any advice for us, we would be so glad to hear from you.  

Haley's Length for age growth chart
Haley

Haley
  

19 comments:

  1. my son was always small - didn't get on the growth chart until he was SEVEN!!! he had the stimulation tests and was always normal. it wasn't recommended that he have growth hormone.
    he is now grown (31) and is 5'7". a short man but there are many short men in our family. why introduce another treatment to haley when she already has so much going on? it won't affect her final height if she's not deficient.

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  2. I agree with Wendy. My daughter is almost 3 (in December) and is 24 lbs. She was 16 lbs at one year and probably around 20 lbs at two years. Growth hormones were never even mentioned at her appts. What is more important is that she is growing and it looks like Haley is too on her own curve. I was the exact same way as my daughter, except worse. I was 14 lbs at 1 yr. I have always just been petite, still am. They did testing when I was little to guess what my adult height would be and they were right on 5'4".

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  3. I sent you an email to the address that is linked to your blog.

    Everyone's decision on whether or not to proceed with HGH is so very personal. Every child is different and their medical history plays a significant part on whether or not to go forward. No one would choose to give their child shots just because they are "small". There is so much more to it.

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  4. My husband was on them too. He started on them much later(11years). He's still a short man, but it did help.

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  5. I just wanted to tell you I find you and your family so inspirational! I also have a Kayla, she's 19 and a surviving twin, so I love your choice of a name.

    I really wish we had been offered the growth hormone you spoke of. She also very tiny, and weighed 23 pounds when she started school.
    She's 19, fully grown, and about 4 feet, 9 inches tall, so I am sure you're doing the right thing for your girls.


    If it's any help, my Kayla is hard of hearing, is almost blind without her glasses, and has a problem with her hips, so she never took regular PE. However, she made the A/B honor roll and graduated high school last year. She just started college last month.

    Your girls are going to have a wonderful future, I'm sure of it! Good luck!

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  6. she'll be a short adult, but so what? Especially for a female, short stature isn't really an issue. I would be very leery of a daily shot just to increase height by a couple inches. JMHO!

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  7. I don't have any advice or experience with growth hormones but I have twin girls also. They are 2.5 and I have one that just hit 22 pounds (almost) and one that is almost 24 pounds. We see a dietitian and have worked hard for those 22 pounds and 24 pounds. I just wanted to say I know how hard it is to have little one that need to gain weight and just seems like they can't. Good luck!!!

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  8. I would do some research, that makes me nervous to commit to hormone treatment this young, especially when she has a lot of challenges already. I don't know anything about it though.

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  9. My brother started growth hormone therapy when he was 12 or 13. I've given him his shots a few times, and it's pretty easy. It's an injection pen device and it has a cover so that you can't see the needle go in. (Which would be a problem for me! lol!) He does say that it hurts, but he has very little body fat. It hurts less when done in a place with a little pudge. The shots have really helped him get on track for his age. He's 16 now and about 5'4".

    He does really hate having to do it though. He says it hurts. I'm not sure I'd want to do it if it weren't necessary.

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  10. Although I'm generally pro-medical-advantages, and I (not a doctor) agree that she's really small, I question the statement that children who are born so prematurely generally need growth hormone. Maybe they're at increased risk of needing it, but I doubt it's more than 50% of micropreemies who are requiring these hormones.

    Courtney (mom to 23w5d twins born May 2006)

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  11. I have NO experience in this whatsoever, but I would get a second opinion.

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  12. I also suggest a second opinion before moving forward with the growth hormones. Having said that, it is ultimately your decision. You know your child better than anyone else, and you should do what you feel is the right thing. Whatever your decision is, I'm sure it will be the right one. Mommy's instinct is seldom wrong.

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  13. You can email me personally at deidrag2000@yahoo.com, if you would like. One of my triplets was very growth restricted in the womb and was subsequently born very small for gestation. He has never really done anything dramatic on the growth chart and has always had low tone/fine motor issues. He's 8 now and we finally started growth hormone about 8 weeks ago. He's on the charts now and his overall muscle strength has greatly improved and his fine motor has improved. His appetite has also improved. It has been wonderful for him.

    I have to disagree with the other poster that it won't effect final adult height because my understanding from the endo is that you can expect an average of 2 inches added to final height even if it is more of an insufficiency issue rather than a deficiency of hgh.

    Not only that ...we got insurance approval so I really have a hard time believing that insurance would cover such an expensive treatment if it were not going to help with final adult height.

    The injections are also no big deal....it's the smallest needle I have ever seen and it is only a subcutaneous injection.
    Deidra

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  14. I would also get a second opinion. That is a big comment to make and you want to make sure you are making the right one. Since she is a medically involved child you should think about the prediction of how big she is going to be. If you are still going to be caring for her as an adult, smaller is size would be better. JMO

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  15. My triplets are small too (born at 29.6 weeks). The one thing my pediatrician always stresses is that their growth should be on a nice curve. It looks like Haley's growth is on a beautiful curve. She is continuing to grow, just not "on the chart." I would definitely get a 2nd opinion. Injecting your child with *anything* unnecessarily just doesn't seem right.

    I would also add that insurance companies cover all kinds of unnecessary and harmful treatments. That's not to say this one is because I don't know anything about it specifically, but I certainly wouldn't say "it's ok" just because 1. the dr. says so and 2. the insurance company will cover it. Definitely get a 2nd opinion. If the 2nd opinion says to do it, then do it. If the 2nd opinion says no, then get a 3rd opinion to know for sure!

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  16. I have a daughter who is very small for her age and was a preemie and a twin. Even though she has never been on the growth chart our pediatricians say as long as her growth curve looks good and is in a a good path it is just her growing pattern and it is okay.

    I would pray about it as a couple and get a second opinion if it was me. She is a cutie!!

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  17. I have a nephew who had leukemia at age one and has been on growth hormone for years. He is now 23 and still only 5' 4". How does a person know if growth hormone helps or not? A second opinion is a great idea.

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  18. You've had a lot of comments on this! Here's my two cents: 1. You have some time to think about this since she's only two. 2. A second or third opinion is well-warranted. 3. It's possible that her height is short because she's not eating enough. In that case, maybe you should work on the nutritional aspect, especially if you look at how Rachel is growing better with the feeding tube. I have two girls that are quite small for their ages. One was just born small full-term and the other is a 23-weeker who has kidney problems which affects growth. It's been hard to get them to eat enough, even the full-term one. She just doesn't want to eat as much as her body needs to grow well. The 23-weeker has a feeding tube so I have a lot more control there. As they have gotten older, it has gotten easier to get them to eat better although we still have a ways to go. Good luck!

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  19. My 3 yr old son is a fraternal twin & just started growth hormone last month. It is definitely a personal decision, but one we thought long and hard about. He has never been on the growth chart, and is currently <1% for height and weight. At almost 4 yrs old, he is only 24 lbs & 36 inches. He's had every test done & seen every specialist, but no answers were ever found as to why he's do small. The main reason we eventually decided to the hormones is wanting to prevent issues with peers. He would be the size of a 3 yr when entering kindergarten, and we didn't want peers to call him a baby. We felt if there's something that can help, we wanted to at least give it a try. You can always stop the shots if you don't want the commitment. He has done great with the injections....looks forward to a reward each night! Good luck with whatever decision you make!

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