York mum in limbo.

[Yorkmum]

Hi

Here I am introducing myself. My 12 year old son took ill in may this year. He had haematuria an enlarged spleen, portal hypertension , varacies in the portal vein and one kidney smaller than the other.

As yet I still don't know why this is happening ? His biopsy didn't look like congenital hepatic fibrosis and everything else has come negative for other things. He's not too bad tired and has headaches.

I'm going mad with worry. Still no answers. I know it takes time. Just feel like there is an invisible thing harming my child and feel powerless to do anything about it.

I know I should be positive. He is ! Just don't know what I'm battling against and I'm still in shock. How can your child have this for years and there be no sign.

Anyway that's us. In limbo. Would be interested in speaking to others who problaly know exactly as I feel.

[Grace2012]

Hi there,

I understand how you feel we have been in limbo for months with our baby daughter. I found out she had a cyst in tummy at 20 week scan and only got a diagnosis when she was a couple of months old. We've only recently got a plan for treatment, she's 5 months and were going out of our minds with worry.

As it happens our daughter is on the face of things a well girl so I can only image how you have felt with your son being poorly.

I hope you get a diagnosis soon as hopefully this will give you some answers and direction.

Just wanted you to know its normal how you feel and your not alone. x

[Yorkmum]

Thanks for the comments. I guess it's natural to think of the worst case scenario. He's back to school tomorrow and every time he doesn't want to do maths I get a phone call to come pick him up. I'm a student nurse and it's so hard to do my full time course. And work and look after everyone else. I get huge comfort knowing there are other people who know exactly how I feel. I hope your baby does well. X