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snowy56

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Relationship to Diabetes
Parent of person with diabetes
Hi, I am a mum of a 12wk baby who is on diazoxide for hypoglycimia and hyperinsulism just looking for some support and also wondering if there are any other parents out there who has a child on the same medication. My husband has also been diagnosed as diabetic too so I feel like blood sugar levels are ruling my life 😱
 
snowy56 said:
Hi, I am a mum of a 12wk baby who is on diazoxide for hypoglycimia and hyperinsulism just looking for some support and also wondering if there are any other parents out there who has a child on the same medication. My husband has also been diagnosed as diabetic too so I feel like blood sugar levels are ruling my life 😱
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Hiya

I think I can help you, alot 🙂 Your baby, as you know, has a very rare, generally genetic, medical condition called Congenital Hyperinsulinism. So does my daughter. She is now 10 years old. We began our journey with CHI on the day she was born. We tried diazoxide and it didn't work at all, we tried Octreotide and that didn't work. She eventually at 4 weeks old or 5 weeks old had her pancreas removed and then within a week had her first insulin injection. However she has what I call type 1 with bells on because she has the CHI tendancies. Her tiny bit of pancreas doesn't work.

Anyway I help run the UK Support Group for CHI. I also started a charity for CHI along with my friend who has two children with the condition and our nurse and consultant from Gt Ormond Street Hospital.

Where was your baby, which hospital are you under ? We are in touch with pretty much the whole of the CHI community in the UK, there aren't many of us but enough that we can support each other.

I really feel for you and I totally and utterly understand. Firstly take a look at our charity website www.hi-fund.org. My daughter's story is on that website under Jessica in Children's stories. My friends children are there as well, Tate and Ellie. We wrote the website with our fabulous doc at GOSH.

We are also part of the hyperins email group. This is a worldwide email group which is a huge support to all HI families all over. I have many friends in the USA, Australia and Europe from there. We also have a website which is www.sur1.org. There is loads of info on both sites. If you want to join that email group then this is the page it is on :
http://www.sur1.org/links.htm

It is the first one.

We are having a meeting in October at GOSH for all CHI families. It is not totally organised yet and no date confirmed but it is in the pipeline as we had a charity meeting a couple of weeks ago. We also have an xmas party where the whole family can come and that is right near GOSH as well.

If you want to PM me, please do and I'll give you my email address and my phone number and you can call me if you would like or email me.

I hope I have helped and made you realise you aren't alone.

Take care 🙂
 
wooooop adrienne i knew you'd be around xxx big hugs hope all is good with you and J xx
 
Thanks Am. I got an email from Northerner and a phone call from Bev so I hotfooted it straight over ! We are fine thanks, just up to our eyes in things at the moment. x
 
hoping you and J have a lovely summer break x🙂
 
In case anyone was worrying, Snowy has been in touch and we are emailing.

🙂
 
Ah thats nice 🙂 Its great to see the support 🙂

Hope things go well for you Snowy and your daughter x
 
Hi, thank you all for your messages and thank you Adrienne!!!! I'm very relieved at last to find people who have heard of the medication for a start. Hope everyone is well and looking forward to the hols.
🙂
 
Hi snowy, Im so glad you have found Adrienne she is a great help and helped lots of us mums in lots of ways.. x
 
Gemma444 said:
Hi snowy, Im so glad you have found Adrienne she is a great help and helped lots of us mums in lots of ways.. x
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Awww you are making me blush ! I love helping when I can. 🙂
 
Adrienne said:
Awww you are making me blush ! I love helping when I can. 🙂
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haha sorry.... If it wasn't for you and bev I would not of know what MDI or pumps were and to ask our DSN to change jacks regime, she has been brill though and change things straight away for us and the hospital are now going to put all new dx children on MDI straight away. Pumps could take 12 months but dsn said hopefully 6 months. That what they told Gabi last week. hope she doest mind me saying that. x
 
Gemma444 said:
haha sorry.... If it wasn't for you and bev I would not of know what MDI or pumps were and to ask our DSN to change jacks regime, she has been brill though and change things straight away for us and the hospital are now going to put all new dx children on MDI straight away. Pumps could take 12 months but dsn said hopefully 6 months. That what they told Gabi last week. hope she doest mind me saying that. x
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Wow that is an awesome move on the part of the hospital. I really really hope that they follow this through and stop using mixes. I would love to see all hospitals follow that. The great hospitals already do that.

🙂
 
So agree with Gemma - if it wasn't for you guys then I never would have pushed for Katie to go onto MDI . Your support has been fantastic.
 
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