Growth in children after neuroblastoma treatment


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11-12-09 04:02 AM
Lester S.
Growth in children after neuroblastoma treatment


My son was diagnosed with stage IV neuroblastoma when he was nine months old in 2000. He went through a year and a half of treatment, including chemo, radiation, surgical removal of masses, and a bone marrow transplant. He has been in remission since this time, thank god. At ten years old, he doesn't seem to be growing on pace with the rest of his friends. Our doctor in Portland has recommended an endocrinologist see him, with which my wife and I agreed. I try to keep him out of hospitals as much as I can, as he has an understandable aversion to them.

I am hoping someone here has some knowledge regarding growth issues for children following neuroblastoma treatment, and options to counter them. I do not want to come off as petty, knowing that my son being alive is the greatest gift I have ever received, but I also want him to have the best life he can, and if there is anything we can do to help him.

Know this, our doctor in 2000 told us that was really no chance that our son would survive. Have hope, miracles happes.

Thanks in advance,

Lester S.

11-25-09 12:54 PM
Jennifer Click
Re: Growth in children after neuroblastoma treatment

Hi Lester,

I don't think you are being petty -- after all that your son has been through, he deserves the best quality of life he can have and you are trying to get that for him.  You're just being a good Dad!

We are in a similar situation now with my daughter Carolyn, who was dx in 2003 at 4-and-a-half years old.  Since treatment she has always been smaller than her peers, but the docs said if she was staying on her growth curve (about the 25th percentile) then she was fine. I noticed in the last year or so that she didn't seem to be growing much at all. She has been seeing an endocrinologist since she was 2.5 years from dx, but due to other issues we had going on, she hadn't seen that doc in over a year, so when we finally went back and discussed growth issues.

Carolyn's endocrinologist (Dr. Sklar at Sloan-Kettering) explained that NB kids tend to be smaller because the chemo is so harsh.  In addition to that, the radiation to the tumor bed usually hits part of the spine and that part of the spine won't grow.  If a child has TBI as conditioning for transplant, that can also affect growth.

When we looked at her growth curve, it did seem she had dropped down to about the 15th percentile, so we did some testing and found Carolyn is deficient in growth hormone.  I discussed therapy with Dr. Sklar and with her on oncologist and decided to start treatment with Norditropin (a nightly injection -- not nearly as bad as GCSF shots). She has to see Dr. Sklar every 3 months for a year -- if she stays on it another year he said we could space it out to every 4 months.  He also said we would be able to tell within 6 months whether or not it is working for her.

If you are considering growth hormone for your son, you probably should see the endocrinologist soon -- Dr. Sklar said that at 11 years old, Carolyn was almost too old to start growth hormone therapy.

Hope this helps!

Jen Click (Carolyn's mom -- dx 1/03, NED 7/03, OT 10/04)

12-02-09 10:33 AM
Re: Growth in children after neuroblastoma treatment

 Dear Lester,

My daughter was diagnosed stage IV at ten months old in 2003.  She is now seven and by far the smallest girl her age.  She is the average size of a four year old!  Three years behind her peers.  She seemed to stop growing completely shortly after her treatment but then has been growing along her own curve ever since.  A few years ago we had her growth hormones checked with an endocrinologist at Johns Hopkins and she was found to be deficient.  Our endocrinologist at Sloan Kettering said that he didn't think it was a hormone issue but one of NB treatment.  We decided to try HGH anyway but after a few months on them Amelia was getting severe headaches.  We took a month break then started up again and had the same problem.  We decided at that time that this was not an acceptable way of life and stopped the injections. I don't think she was on the HGH long enough to say it impacted her growth but I wonder what her growth curve would have looked like given a year of treatment.

Recently our long term follow up doctors have suggested that we re visit the HGH idea again.  I am on the fence.  I know Amelia would like to be bigger but I don't think she understands that the whole process just might not have any effect other than possible side effects.  What did you find out about your son?  What did you decide to do?  Have you heard from other kids like ours on this subject other than the response here from Jen?  I would love to hear more from parents whose kids were tested for growth hormone deficiency and what they have experienced.  There is just not enough data on LT stage IV survivors who were diagnosed as infants.  It's great to be here but there's a lot about these kids that's so unique.

Hope to hear more about this "little" subject.