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Hi adoptmama, I'm not sure i can help much as I don't know GHT, but my ds2 had a very rare illness and I think a parents support group/forum is definitely the best and most useful resource. As to how you find the group/ forum, can you ask your endocrinologist? Our endo is at great ormond street hospital and I think the hospital itself gives out the forum details, and the website might too. Or if the growth hormone deficiency is particularly linked to a particular illness you could find a group for that illness (even if your dd doesn't have the illness) as I know the parents I know through my forum are always more than happy to help others with linked issues. I am sure this is all stuff you have thought of and what you need is a short cut through all this endless googling etc, but thought I'd answer just to encourage you to keep trying to find parents in a similar situation as it is definitely really helpful and gets you loads of insights the drs don't give you.
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!!!)