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Growth Hormone Treatment

(2 Posts)
adoptmama Wed 20-Feb-13 14:31:50

My DD has very low growth hormone and is consequently very short for her age (3). At her most recent visit with the endocrinologist it was found she had only grown 2 cm in last 6 months. Dr. plans on starting growth hormone treatment after next 6 monthly check if she has not grown substantially as well as doing further testing to identify any underlying genetic issue (she has a number of other health problems).

I wasn't so keen on GHT as her final projected adult height is not 'so' low, but our pediatrician has told me it is not just about 'final height' but that her hormone levels need to be at certain levels for other health reasons. Obviously I can hit google and find out more about why she needs the treatment, what it entails etc. but can anyone recommend any good sites to save me hours of trawling? Or even any online support groups with forums? I don't live in the UK so being able to discuss the situation with fellow English speakers would be helpful.

Also I do remember reading that the treatment involves daily injections: does anyone know if this is standard or if the frequency of the injections varies from case to case? (Crossing fingers to hope DD does not need daily injections!!!)

thanks

tangledupinpoo Thu 21-Feb-13 16:22:56

Hi adoptmama, sorry you and your DD are going through this. Yes, I can recommend two good sites / organisations. The first is British, www.childgrowthfoundation.org and the second is American, www.magicfoundation.org . The first has a really good website, and a helpline, and discussion forums. They've helped me lots over the years, and in particular when my DS was first diagnosed. The second was good for information. I think there are facebook support groups attached to both as well.

(BTW, pretty sure GHT is always daily injections as it mimics what goes on in an average person's body. But my understanding is that the devices for administering it are very sophisticated nowadays and it is not nearly as traumatic as most parents think it might be. We have so far avoided the need for GHT but it may be needed as DS gets older.)

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