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Re: [IPk] Consultant Appointment

Hi Sue

As Jackie has said, my children were born with Congenital Hyperinsulinism, 
www.hi-fund.org , which basically is the opposite to diabetes.  They were 
both born hypoglycaemic and could only keep their blood sugars up with a 
constant glucose drip, medication and a ng feeding tube.  So my first child, 
Ellie, had 95% pancreas removed at 3 months of age, but that did not work, 
she was still hypoing constantly and so she had a full pancreatectomy at 6 
months of age.  My son, Tate, had 95% of his pancreas removed at 3 weeks of 
age.  As a result they are both diabetic, but that is much safer than 
before.  Are you taking enzymes to digest your food?  Both Ellie and Tate 
take Creon with every meal they have.  Do you find you are sensitive to 
insulin ie. your dose of insulin in ratio to your weight is lower than most 

I have never spoken to an adult with a pancreatectomy, I am so glad the pump 
is working out for you.  My daughter really wants one, at long last :)

Best wishes
Julia Killengray
----- Original Message ----- 
From: "Jackie Jacombs" <email @ redacted>
To: <email @ redacted>
Sent: Wednesday, May 21, 2008 11:13 PM
Subject: RE: [IPk] Consultant Appointment

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> Hi Sue
> Just jumping in here in case Julia is not about.  Julia's children Ellie 
> and
> Tate were born with a condition called Congenital Hyperinsulinism
> http://www.endocrinology.org/sfe/endocrinologist/end08111.pdf
> We have another parent on the UK CWD with the same condition who now has 
> an
> insulin pump.
> How are you doing at the moment Sue.  Is the job going ok?
> Jackie
>> Hi Julia,
>> I was interested to see that 2 of your children have had most of their
>> pancreas removed. I had my pancreatectomy in August, 2000.
>> I only know 1 other person who has had this operation done.
>> Do you mind me asking the reason that your children had to have this
>>  surgery? I had gall stones, and had my gall bladder removed. I continued 
>> to
>> have
>> attacks   of pancreatitis, and was eventually diagnosed with chronic
>>  pancreatitis. I had frequent hospital admissions, so i took the decision 
>> to
>> have the
>> surgery. I have been so much better since the surgery.
>> I have been on the Medtronic 512 pump since February 2006. I  had fight 
>> to
>> get my pump. My consultant has been excellent, but was a  little anxious 
>> at
>> first as he had never put a patient on a pump before, who was  minus 
>> their
>> pancreas. It is working out well.
>> Also, as well as having had my pancreas removed, i am a children's nurse.
>> Currently i work on the children's assessment unit and short stay ward.
>> I hope you manage to get pumps for Ellie and Tate. Please keep us 
>> informed.
>> Sue
>> .
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