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Elite Veteran
Posts: 1127
  
Location: Vancouver, Canada | Hello,
Has anyone had any experience with this, or information they want to share? I have just started looking into it for my undersized progeny.
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Expert
Posts: 3243
Location: Utah | Hi Susan,
I don't have any personal information on growth hormone therapy. I would be curious to hear what the endocrinologists and genetics people would think about your guys. Hopefully someone has some direct medical experience with this who can share with you.
How's Malcolm doing? I've been thinking about you! Hopefully all is well and his recovery is now going in the right direction... keep us posted.
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Elite Veteran
Posts: 1127
Location: Vancouver, Canada | Hi Carmell,
Well, I will certainly keep you posted. When Malcolm was much younger he had his levels tested and I think they came back normal. Like Braydon, Malcolm is well proportioned. At four years he weighs 23 lbs (with implants) and is 82 cm high (after surgery). His feet and narrow, his wrists are frail...etc. I want Malcolm tested and assessed again, as the docs are frankly puzzled over his size. I think his kidney function should be tested if it hasn't already been, to see if there has been a change. We've all been so focussed on getting the surgery done that we have let other things go (except for speech and hearing, which we've been addressing).
From what I've read of GH therapy, the bones elongate only, and they dont increase in diameter. However, when I checked with the ortho, who knew full well Malcolm's bones after working with them live, he though it was a fine idea to look into.
So I'll let you know. What I'd really like if for Malcolm to be hale and hearty instead of weepy and afraid to do anything. He just wants to sit and watch tv or better yet, play computer games. There's nothing I can force into him to recover his old spirit, so I'm going to focus on improving his physical aspect as much as possible.
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Expert
Posts: 1582
Location: Greenbush, Minnesota | Hi Susan ~
Emily's doctor had talked about growth hormones at one point. We did some blood work and an x-ray of her hand - something like a bone age scan - I'll have to look through her records to see what it was called for sure. Anyway, everything came back okay yet she was soooo skinny. Well, we decided to go for the g-tube in preparation for her evaluation for the titanium rib. The increased calories through the tube was just what she needed. Emily has never been a big eater and we have always struggled with that. Even now, she barely eats anything. We have had her checked for oral aversion, etc. and things are always okay. She does have a reflux and is on meds. for that. I am hoping that this will improve and at times it does and then she gets a cold or something and we go backwards again. At least at this time we can rely on getting the calories she needs in her through the g-tube. Prior to receiving her g-tube, her weight held at about 26 pounds for months - now almost a year later she weighs about 36 pounds. We have backed off on her feedings since surgery because she had gained enough so now we are trying to let her do a little more on her own. I'm sorry I can't give you any more info. about the growth hormones but I thought I would share this other info. Oh yeah, they did put Emily on a steroid/appetite stimulant for about 3 months once and she ate and ate. However, she got so 'fluffy' from it we stopped it. I'll have to post a picture of her during that time - I still can't believe how puffy she was, but it was fun to see her enjoying food! The doctor hoped that she would learn some new eating habits while she was on the med. but things went back to the way they were after we stopped the med.
I hope you can get something figured out for Malcolm soon!
Keep us posted!! 
Janita |
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | SUSAN,
AT ONE POINT WHEN ZOE WAS 3, GROWTH HORMONES WERE MENTIONED FOR HER...
THE (LOCAL) DOCTOR THAT MENTIONED IT HAD A SON WHO WAS ON THE GROWTH HORMONES,
BUT WE WERE IN SUCH A CRISIS AT THE TIME (PNEUMONIA) THAT I FORGET THE
DETAILS....BUT I DO REMEMBER HER SAYING HE WAS HAVING GREAT SUCCESS...
WHEN WE MET WITH ENDO THEN IN BOSTON, AND THEY MEASURES ZOES BONES, SHE HAD
JUST TURNED 3 AND SHE HAD THE BONE STRUCTURE OF A 18 MONTH OLD....BUT THEY
DID NOT FEEL SHE NEEDED THE HORMONES AT THAT TIMES, BECAUSE THE DELAY IN GROWTH
WAS FROM ALL THE FRAILITY OF HER HEALTH....BUT IT WAS NOT SOMETHING THEY WOULD RULE
OUT FOR HER, BUT THEY WOULD LET TIME TELL THEM MORE....
ZOE HAS GROWN, BUT I CAN TELL YOU THAT SHE LOOKS AND MEASURE AND WAYS, MORE IN THE
5 YEAR RANGE THAN HER ACTUAL 7 YEARS...
AND WE WILL AT SOME POINT IN THE NEXT YEAR OR SO BE MEETING AGAIN WITH ENDO...
CHILDREN ARE AMAZING...I REMEMBER MY NEPHEWS, BEING, HEALTHY AS HORSES, AND BEING JUST
LITTLE WISPS...MY GIRLS WERE BIGGER THAN THEM AT POINTS, BUT BOYS SEEM AT POINTS TO JUST TAKE OFF
IN GROWING....
I LOOK FORWARD TO HEARING MORE ABOUT YOUR DECISION....
GOD BLESS.....
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Elite Veteran
Posts: 1127
Location: Vancouver, Canada | Thank you all for your stories. I will keep you all posted as we go in for an assessment. I am not sure the endocrinologist will want to do anything but we will see.
It certainly is the case that we have all had more to worry about than just growth!
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Elite Veteran
Posts: 1127
Location: Vancouver, Canada | Hello all,
Just to follow up, unless Malcolm's blood test indicates that his hormone levels are abnormally low (the difference between normal and nonnormal is easier to detect as kids get older), then we will NOT be trying the growth hormone route.
Unless the child is hormone deficient, or the child has a specific problem (like Turners) which is known to respond to this therapy, one could be giving shots to your child every night just to speed up growth without increasing overall height.
Like potty training, you can start early or you can start later, but you will end up at the same point.
Is this certain in Malcolm's case? No. However, pokes every night to a child terrified of needles from already having too many in his life? Not at this point.
We'll see the doctor yearly to make sure that things are going well. Meanwhile, I can't deny that we've gained two inches and 2.2 lbs since surgery. And Godwilling, this will only get better!
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | DEAR SUSAN:
I AM SO HAPPY TOO HEAR ABOUT THE WEIGHT AND HEIGHT GAIN...AND AM HAPPY THAT MALCOLM
WILL NOT HAVE TO ENDURE THE POKES...
BEST OF LUCK AND PRAYERS FOR SURGERY ON TUESDAY..... |
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Regular
Posts: 97
Location: Dayton, OH | This is superb news for Malcolm! That is a tremendous weight gain for a little guy with feeding issues!
I don't know if it's any encouragement, but Ana has feeding "issues" as well, and we have run ourselves ragged getting tons of professional evaluation and advice. Not much of it was helpful. My friend went with me a visit to the Feeding Team. We spent almost the whole day in evaluation with several specialsts. At the end of the eval the Feeding Team doc came in real professional and official. He checked Ana over and then gave me his thoughts and suggestions. We got in the car, and I kid you not, my friend said "was that doc for real?" um-hm, why? "Well, we just spent the whole day here going through all these questions and watching Ana eat and all the doc could do was tell you exactly what you told them all day long." Pretty much that's the way a lot of our visits go or they want me to do something ridiculous like write down everything she was offered to eat for a month and how much she ate of it or if she refused it.... It's frustrating.
I think every child is different when it comes to eating and then when you add stuctural deformity to the mix, the feeding "issues" we work thru with them just get more complex. It often boils down to moms/grandmas/caretakers knowing our children best . I've come to the conclusion that Ana eats the most when I offer food every couple hours. Much to my dismay, it's not when I dance and sing or do the "choo-choo train coming around the bend" act to get her to open her mouth so I can slip the spoon in! I'm sure ya'll know what I'm talking about! Ana has gained 2# since last August! Gracious! What a tough row to hoe and we've got the whole field ahead of us.
I'm really glad Malcolm is gaining weight. I'll pray that his tender little spirit is restored. Bless him Father and use him mightily.
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Elite Veteran
Posts: 1127
Location: Vancouver, Canada | Thanks Melanie,
2lbs! Wow, that's a great achievement!!!
Every few hours is what we do too, with William, who is started to eat less well now that he is growing.
You know, we went through the process of assessing what Malcolm ate for a month when he was about two. He was emaciated, and I struggled so hard to get him to eat more. I drove myself crazy.
We wrote everything down for the nutritionists. It turned out he was not eating quite enough, so they told us to use Pediasure (I had already started using Carnation Instant Breakfast). I give Malcolm 1 or 2 bottles every night and it helped before surgery.
After surgery, his appetite is much better.
Anyway, thanks for the encouragement!
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Member
Posts: 10
Location: Atlanta, GA | Hi Susan from Susan!
My Emily had an extremely slow start with feeding when she was born in 1995. We met with a nutritionist in our geneticist's office who prescribed Alimentum formula (switched to Pedia Sure as she got older) mixed with rice cereal, a protein powder, vitamins, and Thick-It. One of the many reasons Emily couldn't feed well was because she had/has nasal reflux (her food easily comes out her nose). She couldn't manage foods/liquids with a thin consistency. Once she got to textured baby food and then table food, there's not stopping her now! She can eat steak as well as I can! Her chromosome deletion (Monosomy 8P-) keeps her tiny but she's very healthy in most other ways. We've struggled for years to find food that is high in calories/nutrition with the least amount. Good luck to you! |
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Growth Hormone Therapy
