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ds poor growth - growth hormone treatment, possibly costing 200 000 euros! Anyone's dc had GH treatment & can share experiences?

(10 Posts)
ErnestTheBavarian Thu 25-Sep-08 15:20:43

DS is almost 5. He's often mistaken for a 2 or 3 year old. His rate of growth has slowed to only about 2 cm per year, he's now 97 cm and 13 kilos (my 13 month dn is 11 k!)

Seen endocrinologist who wants to trial GH, tho he doesn't appear to be GH deficient, but thinks this might help. We have to apply for him to be accepted onto a trial, and if accepted, they will pay for the treatment for the 1st year, possibly 2. By this time it will be clear if it helps him or not. If it helps, we will have to continue to give him daily injections for his entire childhood - and been told to expect it to cost up to 200 000 euros. OMG

Has anyone had GH treatment for their dc? How was it giving the injections? How was the rate of growth? Was the treatment given on the NHS? Did anything else help or hinder?

I've been told estimated end height around 5 foot (or a bit less) with no treatment, but also that this might not work. Feel kind of helpless and worried for ds & increasingly skint too Worried also about him getting bullied, but so far, socially he's ok, but ends up being with children his own size, ie younger, which in turn I think makes him more immature/hampers him maturing iyswim

ErnestTheBavarian Thu 25-Sep-08 16:48:13

no one got experience of growth hormone therapy?

LurkerOfTheUniverse Thu 25-Sep-08 17:04:56

hello, sorry no experience of growth therapy
my dd, however is very similar weight & height and is nearly 6, but it has never been remarked upon when she has had check ups etc

should i be worried?!!

ErnestTheBavarian Thu 25-Sep-08 20:11:54

well, I've been worried about my ds for a long time, as he's significantly smaller than his peers, and his brothers. My pediatrician up til now kept saying not to worry while he was still on the %ile chart, but he dropped more and more, ad now isn't on it at all. Of my 4 children, he was the biggest and heaviest at birth. He was on the 50th %ile. Now he's no where near it.

I moved recently and mentioned my concerns to my new pediatrician, he agreed and he's been seen by a specialist.

If your dd is as small as my ds, I'd go back and ask tbh, and am surprised it hasn't been commented on. I get comments now all the time.

That said - I've just had a dd, she's only 3 months, so time will tell, but if she turned out also small I'd be inclined to leave it. A small girl imo will have fewer social problems than a very small man. And no way could we cope with 400 000 euros med bills. It still hasn't sunk in yet.

LurkerOfTheUniverse Thu 25-Sep-08 20:30:35

where are you based?

it is true about a small womann having fewer social problems than a small man.

my doctor said that my dd is underweight but that if she has energy etc then not to worry.

nightcat Thu 25-Sep-08 20:53:18

Does he have any other symptoms, either food related or secondary in terms of malabsorption? Poor growth can be linked to celiac and if there is a possibility that he might be celiac, he would dramatically improve by diet alone.

ErnestTheBavarian Fri 26-Sep-08 06:45:26

I know he's low in iron, so am going to really go for it re diet & pray hard. Never heard of celiac, but will look into it.

Lurker, if I had a 6 year old who looks the size of a 3 year old I would worry big time. Energy or no energy, there is something wrong if a child is so much smaller than peers, imo. And, as I learnt, it's not just the size, but rate of growth. My ds grew fine till he was 2, and since then his growth rate slowed to practically nothing. Not growing at al (or only a couple of cm) is NOT GOOD and should be looked into.

Good luck with whatever you decide, but I personally would be back and demanding investigations & referrals.

I'm in Germany btw. I was in Switzerland, where my doctors kept telling me not to worry, as he was still on the chart, so I had to sit back and watch him fall off the chart. Docs did eventually agree to investigations, but we moved before it came around. Came here and were referred to specialist immediately. Feel relieved to finally get ball rolling.

gagarin Fri 26-Sep-08 07:14:02

YOu could try contacting this organisation for advice and info? It might help your decision makng?

ErnestTheBavarian Fri 26-Sep-08 16:38:30

thanks gagarin, will have a butchers.

nightcat Sat 27-Sep-08 21:01:47

low iron/anaemia suggest malabsorption and could potentially be linked to celiac or gluten sensitivity

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