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Growth hormone resistance

(15 Posts)
Iwanthertoloveit34 Fri 15-Dec-17 13:41:56

Anyone have any experience of growth hormone resistance?. DS has just been diagnosed and I'm looking for any support groups.

woosey35 Sun 17-Dec-17 20:16:12

When you say growth hormone resistance..what do you mean??
My daughter has growth hormone deficiency. On testing (insulin tolerance test) she was found to have no growth hormone detected in her blood.
Is this what you mean?

Iwanthertoloveit34 Sun 17-Dec-17 21:53:28

Hi my son had the insulin tolerance and it was found that he did produce growth hormone but his Igf1 levels were low. He has completed weeks trail with growth hormone injections but that showed no significant changes in igf1. So they think he has a resistance to growth hormone. More investigation and DNA testing is next . How's your daughter doing? Its a worrying time isn't it.

woosey35 Sun 17-Dec-17 22:31:46

Daughter is on growth hormone injections. She has adrenal gland failure too. So she takes hydrocortisone 4x daily and then growth hormone injections every night.
What were your sons symptoms? My daughter literally stopped growing up but seems as if she was being inflated with a balloon pump! She got rounder and rounder. She looked horrific!! Was so so sad to see!! The GH is helping her a lot. She is less tired and her cognitive function had improved too.

woosey35 Sun 17-Dec-17 22:32:40

Ps my daughter didn’t have any trial on the injections. She just went straight into them. Her growth hormone had been zero as well as her cortisol.
What’s his symptoms? X

dimples76 Mon 18-Dec-17 18:34:02

I would recommend the Child Growth Foundation (they have a Facebook group). My son is in the process of being diagnosed GHD and their helpline has been excellent

woosey35 Mon 18-Dec-17 19:27:22

Sorry to hear about your son dimples. I’m not on Facebook. I will google them though. How old is your son and in what way is he affected?

BlackSwan Mon 18-Dec-17 20:59:13

Hi OP - How old is your DS & how did he come to be diagnosed? I hope you get some answers soon. I can imagine this is very stressful. My son is on GH - woosy, like you he's also on cortisol (we're doing 5 times daily as he metabolises his hydrocortisone really quickly).
I would join FB just for the health support groups - I'm in Child Growth Foundation group too. For rare stuff, it's the best way of finding people with similar diagnoses.

Iwanthertoloveit34 Mon 18-Dec-17 21:32:08

Hi all,l my son is 4 apart from very slow growth from about 18 months he has no other symptoms. A longer trail on growth hormone has not been ruled out but at this stage they wanted to measure the effect growth hormone had on IGf1.His next appt with endocrinology is in April and the consultant hopes there will be some results from the DNA testing. As much as I was glad not to have to inject him every night, ( DS ask's every night if he has to have the 'pokey thing'it was disappointing to hear that growth hormone wasn't going to be the answer to his slow growth. I will look into the childhood growth foundation.

woosey35 Mon 18-Dec-17 21:43:30

Black swan..can i ask you what your sons diagnosis is?? Has he pituitary probs??
My daughter has Adrenal Insufficiency and growth hormone insufficiency. Has hydrocortisone 4x daily and GH daily. Would love to chat to a mummy who deals with the issues of hormone probs. So tricky when they get poorly. My little girl had crisis last week and ended up blue lighted to hosp. Just so so scary and lonely

BlackSwan Mon 18-Dec-17 22:21:20

Hi Woosey - I'm so sorry your daughter had a crisis. Was she with you at the time? Did you administer the injection yourself? I hope she has recovered well. Our son hasn't had a crisis ever, touch wood - but we keep the injection with him/us at all times. I know we have to be prepared. He was diagnosed with a pituitary tumour at 3 - he's nearly 8 now. He's on thyroxine as well as the GH & hydrocortisone. How about your daughter? Please feel free to PM me! Are you on any of the AI pages on FB? I think it's all useful.

woosey35 Tue 19-Dec-17 11:42:27

My daughter was with us. She vomited in the early hours. We gave her oral
Hydro but she couldn’t keep it down. I called the hosp for advice and they said repeat oral hydro but it happened again so we had to call 999. I was shaking so much trying to open the glass vial that I smashed it in my fingers. DH opened another one and I drew it up ready. When the amb arrived they were casually doing her Sats and observations etc when she vomited again and started feeling dizzy and weak. So they rushed her out to the amb and made me give the injection. I begged them to but they, quite rightly said, if I did it with them by my side then I’d be ok next time. I was so scared. This was her first crisis at home although she’s had crisis after having teeth out in hosp. She’s spent a lot of time in HdU.
She was diagnosed with AI at 2yrs, and then GHD a year ago. She’s also got repetitive anaphylaxis which is caused by stress....not good when you don’t make your own stress hormone!! This time of year scares me..they’re so vulnerable aren’t they. I do feel really alone with it all tbh as have no one who is going through the same. I don’t do Facebook as don’t like it. Be lovely to be in touch with you.
Has your son had surgery on his tumour?

BlackSwan Tue 19-Dec-17 19:36:57

Oh my that's so scary. I have never had to break the vial open - there's a gadget you can get to break the top off. Let me see if I can find a link. I'll send you a PM so we can get in touch. Just look in your mail box above. xx

woosey35 Tue 19-Dec-17 23:05:15

Lol yes I had one of those rubbery things to go on the vial to help you open it!! I still smashed it!! Lol

Iwanthertoloveit34 Wed 20-Dec-17 10:34:22

Hi I have just joined the child growth foundation, they are on face book but also have a website. I have already found them an amazing source of information and support and highly recommend them.

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