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DD not growing but test showed normal Growth Hormone level...

(12 Posts)
fernzmal Thu 22-Sep-16 18:14:27

DD, 12, has had two cancers (two different types of leukemias) and had a bone marrow transplant three years ago. The doctors noticed in Sept last year that she hasn't been growing as well as she should be, and she underwent a stress test which showed that she is not deficient in growth hormones. So we still don't know why she is not growing. She is scheduled to undergo two more tests next month, the insulin test and the glucagon test to doubly make sure that she really isn't GH deficient.

Don't know what I am looking for here, as her complicated medical history probably means I might not find anyone with similar experience, but I was wondering if anyone else's DC had had growth issues and it WAS NOT due to GH deficiency?

Or if it was not, did they try GH injections anyway, and did they work? As we have been to two different hospitals and one suggested we could try GH anyway if we were really keen, although it might work and it might not, and they are very expensive.

Although DD is not keen at all, having spent much of her life being prodded and poked and having blood samples taken almost everyday, yet at the same time, she is deeply envious of all the tall (and popular) girls in her year....

Also, it is linked to her pubertal development, as she has yet to start her periods, and the doctors say she may have issues with her ovaries due to the chemo and may need to start taking estrogen, but in small doses first, as estrogen will start to fuse her bones and then she won't grow anymore.

She also may have ostopenia (brittle bones) due to the chemo and is prone to fractures, and is currently on high-dose calcium and vit D3. All this is linked, and they have taken an x-ray of her hand last year, to check her bone age and it is in line with her actual age. Just took another one on Tuesday, but the doctor has not informed me of the result yet.

Anyway, I don't know what I am looking for here, just some words of encouragement maybe from anyone who has gone through similar issues before....and it is all still a bit confusing for me, so maybe someone who has been through this path can help to shed some light...

TroubleinDaFamily Thu 22-Sep-16 18:19:16

I have no real knowledge but didn't want to post and run.

A bone density scan is the least invasive thing I can think of.

fernzmal Thu 22-Sep-16 18:22:42

Thanks much Trouble, she had one done last year but may need to do another one this year sometime...

You need a bone age Xray very soon to know how much growth she has left. If she is 4.10 to 5ft, maybe it's been not worth treating with HGH?

Poor girl, no wonder she's had enough.

My DD had growth issues not due to GH deficiency (although the didn't do the gold standard test I've since heard of). DD was discharged as our family is short. Sadly she had an advanced bone age, but for some inexplicable reason we were told it was her actual age.

She stopped growing at 12, so that's why the bone age is so important. Not making adult stature has had serious mental health consequences so I would advise that you go private for the bone age xray if they won't do it quickly on the NHS.

If she isn't going to grow much more, you have time to prepare her for that, which will so much better than not knowing.

Wishing you both well.flowers

yeOldeTrout Thu 22-Sep-16 18:34:16

Just how tall is she now?
Given all her treatments, as long as she gets near a typical adult height (so maybe 4'11" or taller?) then I would be content myself to not intervene further.

I read that the post-transplant drugs (immunosuppressant?) were thought to suppress growth in some kids. There is a girl at DC school with organ transplant - the girl is 9yo but very slight & small (her mother is neither).

Ladybunnyfluff Thu 22-Sep-16 18:40:55

It would seem likely that your daughter's growth issues likely come from her medical history (what a brave fighter!).

But could it be that your daughter also has just plain constitutional or idiopathic short stature? These children would not have growth hormone issues.

My daughter is considered to have constitutional short stature and grows very slowly and is subsequently plotted considerably below the growth charts for both growth and weight; but since she is considered healthy in other ways so far (she's 3) paediatricians are happy to let her grow on her own vague (and it really is a vague) growth curve.

Sorry if that's no help though just thought it may be possible.

Miloarmadillo1 Thu 22-Sep-16 18:47:47

Can't help much but it's nice to find others with growth issues. My 2 yr old daughter had the glucagon test today. She had enormous doses of steroids as a baby (as treatment for epilepsy) which stopped her growing and she's off the charts small. We had a year of 'it's just the steroids, she'll catch up' before they decided maybe it wasn't and she won't. At the moment the jury is out whether the steroids have permanently wrecked her pituitary or if she has an underlying condition that is causing both issues. I'd be very interested to hear of any experiences with growth hormone as it's our next step if this test agrees she is deficient (she has low GF1)

lasttothebar Thu 22-Sep-16 19:30:12

My son was very small and had all the tests for growth hormone etc and they found no problem with the results but he was started on growth hormone which he takes every night since he was about 7. He is now nearly 15 and still on it he is still small for his age but taller than he would have been without it. When they first start the growth hormone they do a trial period to determine if it having an effect and they won't continue if they don't think it makes a different.

flutterby77 Thu 22-Sep-16 21:41:33

My son has a condition called russell silver syndrome which causes growth and weight gain problems (he is not on the percentile charts for either and never has been) but he is not growth hormone deficient. He just doesn't use the growth hormone he has efficiently and will require growth hormone treatment at some point. I recommend that you contact the child growth foundation, they are the experts.

MissSmiley Thu 22-Sep-16 22:50:00

Sorry to hear about your daughters illness.
Probably not related but my son who is now 9 flat lined on his growth chart after we found out he had the gene for coeliac disease. It's in the family so they were all tested. He had no other symptoms apart from not growing. He had negative antibodies and biopsy but he does have two copies of the gene. He was put on a trial gluten free diet and grew. Two and a half years later he is now back to 50th centile.
I suppose it could be something completely unrelated to her other issues.

Bichonsrock Fri 23-Sep-16 10:10:18

Hi my dd is 12 and has not grown in 2 yrs, we've just found out she has hypothyroidism, the auto immune type and this is the reason why.

Bichonsrock , that's good that they have found the cause. How did they work out the cause? I'm worried they never found the cause of my DDs short stature and advanced bone age. Medics had told me it was constitutional meaning she'd grow longer but it turned out it was opposite😦 I've just been diagnosed with under active thyroid because of high antibodies. I Hope your DD now catches up on lost height. If you're worried about her height, you should get a bone age Xray. If it's advanced, she might not have much growing time left, but if she's very short, they can slow her bone maturity to give her extra growth time if they act quickly. My DDs bones fused at 12 because of untreated advanced bone age. I really hope you have a good cliniciansmile. So good they found it.

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