Vitamin E injection

[Stacian]

My daughter is nearly 3 and has PFIC 2. She has been taking vitamin E suppliments since she was diagnosed but we have just been told her levels are so low she needs an injection of vitamin E. Does anyone have any experience with this thanks

Stacey x

[Gemob]

Hiya. My daughter has pfic too and has an injection for vitamin e once a month. I think it's quite common among pfic kids. Our community nurses do it for her but I go to hospital only because my house has always been a safe place. It hurts her a little but she is fine with it! If you have any questions ask away xx

[Stacian in reply to Gemob]

Thanks ks both for your reply... Gem hope you don't mind me asking but how old is your daughter?... And where are you with her condition?... We are going up to to Birmingham for our transplant assessment next week and as you can imagine we are Terrified xx

[Gemob in reply to Stacian]

She's 7 now and she has her biliary diversion and she is stable for the moment. She struggles to gain weight so has a feeding tube. Can i ask what mutation your daughter has? X

[Stacian in reply to Gemob]

She has PFIC 2...we have never had any further genetic testing only told that its was down to both her father and I having the mutated gene... Is this what you meant? Xx

[CROC]

My daughter has Alagilles. She also takes large doses of Vit E orally but it’s not quite enough so she has monthly Vit E injections. Alpha Tocapheryl Acetate for both. She’s fine having them & it works. Best wishes, Claire

[Stacian in reply to CROC]

Thanks for your reply... It was very reassuring xx

[MI-grandma]

Hi, how is your daughter doing now? My granddaughter first showed signs of liver disease at 6 months. She had been perfectly healthy until then, no unusual symptoms whatsoever. She's now 13.5 months old and still in the process of being diagnosed. Her pediatric GI thinks it's a form of either PFIC or BRIC. I think they already ruled out type 1, but I'm not sure what other type she has. Right now, her liver enzyme numbers are improving with ursodeoxycholic acid. Nobody in our family or my son-in-law's family has ever had liver disease. We're hoping it stays mild because we don't ever want her to become ill enough to need a liver transplant.

[Stacian]

Hello sorry for the delay in reply, I don't come on here a lot lately. She is doing very well, we underwent the transplant assessment which determined her liver is functioning as well as it can her blood levels are normal.. The only symptom. Is itching... We decided not to go ahead with transplant while she is well, as it would only be to help the itching.

If you have nay other questions I am. Happy to answer them

Hope everyone is doing well xx

[Hannahailu in reply to Stacian]

Hi Stacian, my daughter also has PFIC 2, and she also got deferred for transplant as she seems doing ok but her itching is becoming unbearable especially at night. How do you deal with your kids?

[Stacian]

Hi... Molly's itching is also unbearable especially at night. We manage to distract her some of the time with toys or going outside but most of the time she is frantic and distressed... There is nothing really that helps...I'm sorry this is not very helpful xx