Congenital Hyperinsulinism

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Jennifer256
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Posted: Tue Jun 15, 2010 9:08 pm 
Post subject: Congenital Hyperinsulinism
Hi was just wondering if there is anyone on here who also has a child with this condition?
x x
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Jennifer256
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Posted: Sun Jul 11, 2010 8:14 pm 
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Well I guess nobody does!! Very Happy

It is thought to affect 1 in 50,000,00 births, and in my opinion women should have more information about it and babies blood suars should be tested when born and before going home.

If anyone would like to read about it please follow the link, the link is for the GOSH site were as Archie gets his treatment with NORCHI which is the northern england specialist centre that operates between manchester childrens hospital and alder hey and they do not have a website yet!

Jen x x

http://www.hi-fund.org/
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Weasleywannabe
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Posted: Sun Jul 11, 2010 9:03 pm 
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Hello,
Thank you very much for your link. I followed it and read some of the children's stories. I knew nothing about this condition.

Please feel free to ignore these questions if you would rather not answer, but how is Archie doing at the moment? Has Archie had some of his pancreas removed? Is he on lots of meds?

Thank you very much
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Jennifer256
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Posted: Sun Jul 11, 2010 9:13 pm 
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Hi
No I don't mind answering questions! The more people that know about this condition the better.

He was lucky as he didn't have to have his pancreas removed and he also feeds orally (not great but manageable) alot have a g-tube for feeding (a hole and tube directly into the stomach)

He is on a lot of medication and is now doing really well, after 3 months in and out of hospital.

We are hoping he is one of the really lucky ones that has the transient type and will 'grow out' of it.

Jen x
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Scottb
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Posted: Tue Sep 28, 2010 3:16 pm 
Post subject: Daughter Just being diagnosed with CHI
Hi There,

We are two distraught parents whose 4 month old daughter has just been diagnosed with congenital Hyperinsullinism. We are currently in QMC in Nottingham and are entering our third week. We are expecting the results of the genetic tests which are being done at Manchester, to determine if it is focal or diffuse disease. Our daughter is being fed every 3hrs via an NG tube as she has totally refused the bottle, is on Diazoxide to suppress the insulin and is having Polycal added to her milk to increase her carbohydrate. The team here are liasing with Manchester on a dailly basis and we are currently trying to stabilise her blood sugars and minimise her vomiting which is as a result of the regular force feeding.

I don't know why I am writing to you really, I suppose it is just to know that there is someone out there going through what we are, we just need to know that if this is the diffuse case and she does not have the surgery to remove the legions on the pancreas can you have a quality of life with your child? how do you manage?

At the moment it seems pretty dark and desperate for us, its our first child and we are in agony, we are considering contacting GOSH to see if we would be better in there, but the endocrine team in Nottingham insist that Manchester is of an equivalent standard to GOSH and they are going throught the same processes as they would, but we just need to know our child is in the right hands.

We need some hope that this is not the end for us and we can have a quality of life with our daughter,

Thank you for reading this,

Scott x
Jennifer256
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Posted: Sat Oct 16, 2010 8:34 pm 
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Just replied to your pm, sorry for the delay not been online much this week x x
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christip1981
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Posted: Sun Oct 17, 2010 1:29 am 
Post subject: Re: Congenital Hyperinsulinism
Jennifer256 wrote:
Hi was just wondering if there is anyone on here who also has a child with this condition?
x x


YES!! my baby is 8 months old and im looking for other parents to speak to that are in the same "boat" as me.
Jennifer256
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Posted: Sun Oct 17, 2010 8:21 am 
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Not many of us are there?! You can add me on facebook if your on there - Jennifer Perry - Liverpool network
There are a few of us that keep in touch on there!


How are you doing with it all? I found it hell to begin with but managing now! Expecting another little one so can't all be bad lol
Jen x x
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christip1981
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Posted: Tue Oct 19, 2010 12:38 am 
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[quote="Jennifer256"]Not many of us are there?! You can add me on facebook if your on there - Jennifer Perry - Liverpool network
There are a few of us that keep in touch on there!


How are you doing with it all? I found it hell to begin with but managing now! Expecting another little one so can't all be bad lol
Jen x x[/quot

we are doing fine. our son is 8 months old and has been on diazoxide since 2 months old. He was born 5 weeks early with a blood sugar level of 8. he weighed 8lbs. 1 oz. he spend 8 days in the NICU on dextrose. the day he was being released we asked the doc if we could have a blood tester for home. he said it was not necessary, that was all behind us and sent us on our way. he had to be fed every 2 hours. he was home 5 days....before our world changed forever. I woke up to feed him at 4am and he was clamy, cold and unresponsive. He was rushed to the ER where his blood sugar was less than 20. He was transported to another hospital where he spent 10 days before being transfered to Chicago (we live in Indiana). he spent 1 month in chicago. Came home with a feeding tube and had to be fed every 3 hours. diazoxide every 8 hours and diuril every 12. HE had genetice testing done and it was deteremined that he is eligible for surgery. waiting for philadelphia to call....
christip1981
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Posted: Tue Oct 19, 2010 12:48 am 
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[quote="Jennifer256"]Not many of us are there?! You can add me on facebook if your on there - Jennifer Perry - Liverpool network
There are a few of us that keep in touch on there!


Jennifer, I am on facebook. having trouble finding you.......
LauraG
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Posted: Thu Dec 09, 2010 3:59 pm 
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hey jenifer i didnt no archie had this but im glad hes doin well:)
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stevie1989
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Posted: Sat Oct 27, 2012 12:25 pm 
Post subject: baby with chi
My son Archie who is 7 weeks old has been diagnosed with chi , we are currently for a pet scan to find out if its diffuse or focal , he will have to have surgery either way as he's unresponsive to the medication , I hope I get good news
Jennifer256
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Posted: Sat Oct 27, 2012 12:35 pm 
Post subject: Re: baby with chi
stevie1989 wrote:
My son Archie who is 7 weeks old has been diagnosed with chi , we are currently for a pet scan to find out if its diffuse or focal , he will have to have surgery either way as he's unresponsive to the medication , I hope I get good news


Hope your doing ok, it does get easier!! Were are you?

There is alot of support on facebook, if you search children's hyperinsulinism uk there are alot of us there ranging from my Archie who never had a pet scan or the op to families who have had the op for both focal and diffuse, you will get alot of support and knowledge of them!

http://www.facebook.com/#!/groups/137059853012784/

If you pm your name I will search and add you on fb and add you to all the groups.

If there is anything I can do to help, just give me a shout, I remember the hopsital days all too much and know how traumatic it can be.

Big hugs to you and your family xx
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stevie1989
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Posted: Sat Oct 27, 2012 5:49 pm 
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Thank you thats very kind , we were at the RVI hospital at Newcastle for 4 weeks now we are down Manchester been here for 3 weeks , my name is stevie- leigh Carr , so how is your little boy doing , what medication is he on ?
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