Hello :) Parents of children with Kideny problems and insulin problems

[purplerat]

Hi everyone,

Just thought I would introduce myself to this section.

My son William was born with ARPKD (Autosomal Recessive Polycycstic Kidney disease) which means his kidneys are enlarged and cycstic and will eventually fail meaning Will will need a transplant in the future. He also suffers with hypertension (high blood pressure) and this is controlled by medication.

He also has hyper-insulinism, which means he can't maintain a stable blood sugar level and can drop dangerously low causing hypoglycemea and needs medication to control that as well.

We visit Great ormond street hospital every 1-2 months for check ups and also our local hospital. Does anyone else have a baby or child that suffers with Kidney or blood sugar problems? It would be nice to meet some other parents who are going through the same things as me.

x

 

[c1reid]

Hi,My daughter has a kidney condition called atypical HUS (haemalytic ureamic syndrome),at the moment its very well controlled (she takes enalapril but was also on atenelol) but this is uncurable and she may need a transplant depending on flare up of disease.It affects her when she's unwell,which touch wood hasnt been for a while, and unfortunately goes hand in hand with her main immune condition (ada-scids).She also attends GOSH.Im here to talk to if you need to xxx

 

[purplerat]

Hi c1reid,

Thanks for your reply. Its nice to chat to someone else who has had similar experiences to me.

I hope your daughter stays well and fights on without a transplant for a good while. Children can be so strong.

Thank you for the offer, if you ever want to talk to me I am here too x

 

[HopefulMi]

My baby was diagnosed with ARPKD today. They think her lungs are fine since we've only just got our last little bit of fluid and are at 28 weeks. I'd love to hear from you x

 

[purplerat]

My baby was diagnosed with ARPKD today. They think her lungs are fine since we've only just got our last little bit of fluid and are at 28 weeks. I'd love to hear from you x

Hey again, i have Pm'd you but also thought I would reply on here

If they think her lungs are fine they she should be strong little fighter. Normally ARPKD children dont die of the enlarged kidneys but of the underformed lungs due to no fluid and no space.

She has made it 28 weeks and is hanging on in there If the doctors feel she would be better off out than in, which is what happened to me then they will do whats best for her xx