Hi everyone. I was wandering if there... - Children's Liver ...
Hi everyone. I was wandering if there was anyone out there with alpha 1. My 10 week old daughter has been recently diagnosed.
Hello
Our 6 yr old son has alpha 1ATD too. He was diagnosed at 14 weeks after being referred to Kings College Hospital after a blood test at 8 weeks revealed it was more than just infant jaundice.
I totally sympathise with what you're going through right now and how scared you are feeling. We had a tough time accepting Matthews diagnosis and coming to terms with it all and although he was very poorly then he is now doing really well and is a very active, bright 6 year old. The future is Still full of unknowns and scares me but for now we treasure him and his current good health.
Matthew had a few prescription formula milk s until he was 1 yr old and had to have a high calorie diet at first due to malabsorption but iso ver that now. He has urseodoxycholic acid, vitamin K, dalivit drops and vitamin E as his meds. What does your daughter have? Where is she being treated?
I know it's a daunting time so feel free to ask any questions. Take care.
Natalie
Hi there
My son has Alpha1 ATD
He was diagnosed at 7 weeks old and were told he would not reach 10 without a transplant.
Pleased to say Reece has just started 6th form college and will be 17 in December. He has been off meds now for a few years and has had no transplant yippeeee
He is about to go through adult transition in January at Kings.
He also has cirrhosis of the liver and a severe nut allergy.
Life has had it's ups and downs but he is a fighter and never complains.
It was scary at first walking into the known but I do have to say it does get easier in time
Christine what a great reply to read 
so glad he's doing so well, especially after being told he'd need a transplant so young. We were told to prepare ourselves for the worst when Matthew was first diagnosed as he was so poorly so seeing him now astounding the doctors and us is fabulous. What soldiers we have
Long may Reece continue to do so well. You must be very proud. X
Very proud x
Our ill men certainly are soldiers x
Long may it stay that way
Hi there,
My 7 year old was diagnosed with Alpha 1 at King's at 10 weeks. As Natalie quite rightly says it is a scary time and you feel like your world has crumbled but you're not alone and I'm so glad you've found the CLDF website which I hope has helped you as much as it did us. I once heard a mum describe Alpha 1 as a sleeping lion, you just didn't know when it was going to wake up a pounce.
The liver unit you're daughter's under will have nurses you can talk to between appointments if you need them. Don't be afraid to ask them anything at all, you won't be the first to ask that.
Our son had a transplant in March 2012 and is doing really well.
Please feel free to ask anything you like. Sending hugs to your little one.
Lisa
Thankyou all for your replies. its horrible we all have to go through it but makes it a little easier to no u are not alone. Nancy was diagnosed with it when she was tested for jaundice. We havent really been told much about it other than nancy has the zz gene which we were told was more severe?
I find it hard not knowing what the outcome will be. Nancy isnt gaining weight very well so is on special milk and powder to help her.
She takes urso and vitamins e d k and a. And is alo on gaviscon due to reflux from the bottles.
Its great to hear some positive stories.
How do your children cope with it as they got old enough to understand that is one thing that really worries me.
Hey hope all is well my little boy kody has alpha-1 he is also ZZ.. The information at the bottom is all pretty much what we endured when he was that age..
rvhliversupportgroup.org/st...
This link is kodys story it just saves me writing it all out.. He is 3 now and starts nursery on Monday any questions you want to ask don't hold back as we are still on our rollercoster journey!
Megan x
Hi megan. Kodys story sounds pretty simular to nancys. We had to go to Birmingham children's and we were told she had ba then at the last minute diagnosed alpha 1. The team at Birmingham are amazing. I think im just expecting to much I want to no what's going to happen next but I no thats not going to happen
Jo x
Hi, I'm sorry to hear about your daughter, My son Benjamin was diagnosed in July 2012 at the age of 3 with Alpha 1 (ZZ) Since finding out we have been tested, Myself, husband and our 2 yr old are all carriers (MZ). Ben had very bad wheezing from 6 weeks old and was put onto a ventolin inhaler diagnosing him with asthma, this didn't improve and after many trips to the drs he was referred to our local hospital for tests, they found that his liver enzyme level was high and referred us to Kings, this is when we were told about the Alpha1, It took along while to sink in but I think the worst was that you don't know what the future holds. His liver is currently all ok and he now has checks every 12 mths. CLDF have been very helpful and supportive, I also joined another group Alpha 1 UK Support Group, I hope all works out ok and if you have any questions please feel free to contact me
Cathy xx
Hello again, yeah Pat is a lovely man makes you feel very at ease.. kody would see him quiet regular still it's just hard as wee are from Northern Ireland but he runs a clinic in our local children's hospital and then Kody has another two consultants here just to keep an eye on him when dr.mckeirnan isn't around.. Alpha-1 has now give Kody cirrhosis or the liver and portal hypertension he has to get an operation next month to get banding down to relieve pressure on his veins 
as I say we just take it as it comes though kody is pretty laid back and takes everything in his stride (typical man).. I hope Nancy and Benjamin are both doing well! It is a very scary time just being diagnosed, but Nancy is in the best care possible keep us all updated please.
Take care
Megan x
Aww poor kody sounds like he is really going through it. How was he diagnosed with cirrhosis of the liver. I worry as nancy has had jaundice for nearly 11 weeks it is getting better though. Really don't know what is normal for alpha 1 and what isnt. Xx
They were able to just by physical examination and through blood test, he also gets ultra sounds regularly to just to keep on top of everything.. Kodys belly is quiet distended as his liver and spleen are so swollen! I'm pretty sure at around 11 weeks kody was at his worst with jaundice, then he got the NG tube and started gaining weight that's when I started to see big changes in him he is still very small and still on high calorie milk to keep the weight on.. Alpha-1 is so unpredictable that's why I take every day as it comes.x
Hi my son Leigh is nearly 17 and is ZZ Alpha one.He was diagnosed at 5 weeks old at Birmingham Children's Hospital.Leigh has kept very well over the years and apart from being on Vit A/D/E/K as a baby and a special milk I used to make for him he's not had anything since!(((hugs)) I can remember Leigh being diagnosed all those years ago and the worry and the isolation I used to feel(no internet back then!) but the most important thing to remember is your not alone and the support available now is wonderful x
At five weeks Leigh had very pale stools and yellow eyes and a swollen side which you could notice upon changing his nappy.For me as I was 20 and he was my first child the whole experience I found very hard to deal with and I had counselling and it triggered depression for me.Leigh is a very sensible lad he's always been told by Dr Kelly that he can only drink within the legal limit and that he can't go out binge drinking with his peers etc.Leigh is a very grown up lad and he understands completely his condition so he's never rebelled when he was younger he used to ask me "why am I different?" but i simply explained it to him that everyone is different for me depression will always be a part of my life and we all have something that makes us special else the world would be a boring place if we're all the same and actually these things needn't be negative.
Hi all, I just wanted to say that as well as other groups people have mentioned on this thread, if you're on facebook there is a group called Liver Mums where you can talk to other UK Mums.
If you're under King's there is also a group called King's Kids.
Both groups have events coming up where you can meet other liver kids or parents too x
My daughter Harriet was 4 weeks old when she was diagnosed at Leeds, at first they thought it was BA and then after hiss scan found out it was alpha 1, she is a zz
She was really poorly when little especially around feeding she would go ridged with pain then have the worst Diorrehea and sickness and scream,
She was very small, very yellow with a huge abdomen,
She's on the same meds as everyone else, and went thank fully to yearly appointments for the first time in 6 years this year,
We are getting the problems with questions now and needle phobias are an issue which she is getting therapy for,
I wouldn't worry yourself to much about the questions they will ask, just concentrate on asking the questions you need to get your head round it all and getting the help you need to allow you to be as confident as you can be about dealing with doctors and professionals,
Good luck with everything xx
Hi thats amazing you have gone to yearly appointment bet you are so pleased. Nancy has just started not to take her bottle and when she does has started to b sick now and again. What did the do to help harriet? Not sure if its a phase or her illness xx
