3 year old son with Alpha 1

Hi my name is Cathy and my 3 year old son has always had problems with asthma and breathing since birth, he was finally referred to Hospital for tests as he was not responding to asthma drugs very well, after having Bloods taken his liver enzyme level was high so they referred us to Kings in London, this is were we found out that Ben has Alpa 1 Difficiency, Myself and husband are carriers and we are awaiting the results of my 1 year olds bloods.

This has come as a big shock and apart from getting so many coughs and colds and infections during the winter he is a happy healthy boy. Love to speak to anybody else who has this condition xx

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  • Hi Cathy,

    I'm sorry to hear about your little boy. I had never heard of this condition until I went to the Auckland transplant centre and they put that I was a carrier on my results form to take home. I have liver disease for a different reason but it was even a shock to me to find I was a carrier. I'm sorry no one who is dealing with the disease has replied to you but most liver diseases have common symptoms and than others pertinent to them. When I used to work part time many years ago I too got more colds etc than other people. I don't now but I am house bound now.The other problem i have had is many many tooth infections and than once they come out I get a gum infection--dry socket and have even had septicima due to a root canal not being done properly. So yes people are more susceptible with liver disease.

    I guess you want to know how long your son will remain healthy for and as no one has replied yet to your post I hope the doctors can answer your questions. I have never met anyone with the same liver disease as me and it would be great to talk to someone. I hope someone will see your post sometime in the future.

    best wishes to you and your lovely wee boy

    Vickie

  • Hi, cathy, we r in the same position as you, our baby Finley was taken into hospital at 7weeks and transferred to Leeds Childrens hospital liver unit where they did loads an loads of tests! We've just had the results back for 4weeks which confirms Alpha 1, he's only 17weeks now so we are still totally shocked an not sure how to feel! CLDF have been great as have our close family and friends, although alot of people haven't got in touch or said anything which really hurts. All we can do is take each day at a time and wait for each consultant appointment every 3 months!!finley also has an older brother Callum who is 3 on Sunday so we r waiting to get him tested for the same disease, he had had undiagnosed health issues going on for years, so we will just have to wait and see.it's nice to speak to other families in the same position so u know your not on your own and we hope you are managing the best u can with lots of support. Sorry I can't tell u anymore as it's all new to us too.Hannah

  • Aww sorry to hear to all of u above... My lil junior now weeks has alpha one he has been thro hell and times not always easy to stay strong has a parent... Junior has regular appt one month maybe more and see kings every 3 months... On lot of med.. But lil monkey learning to spit it out lol..so i would like speak to other familes too...i have read booklets but dunno understand wat happens when older so i been living day by dayxxxx

  • Hi Cathy

    Sorry for not responding before have only just started coming on here. My husband and are are both carriers of alpha 1 ATD, but only found out when our little boy was diagnosed at 16 weeks old. We had a real fight getting him the right tests, and he only got them thanks to our wonderful health visitor who fought the gp and hospital to get the tests. Anyway, upon them finally doing the split bilirubin tests at 8 weeks we were immediately admitted to our local hospital until kings could see us the next week, although they were advising over the phone. We then had regular visits to kings, every month, then every 3 month's for bloods, biopsy etc then a final diagnosis. It completely scared and floored us too but everyone at kings, including the clinical nurses and dieticians and also the CLDF have been great with treatment, advice and just listening when needed. I am pleased to say Matthew is now a happy, hyper 5 yr old and apart from his meds you wouldn't know there's anything wrong. He seems to suffer with his tonsils a far bit, not sure if related and not great at gaining weight, but he is a fussy eater lol but all good apart from that. We are now down to 2 yearly visits to kings so hopefully you'll progress the same way as time passes. My only advice is to take kings clinical nurse number to every Dr / local hospital appts. They have advised me so many times to give Matthew ibuprofen but luckily the clinical nurse at kings told us early on NEVER let him have it. Ive had several arguments about this and now just tell them to ring kings who set them straight that I'm right!!

    Anyway, sorry I seem to have waffled on, lol. Good luck, lots of good health wishes and hope i can help with any questions or just reassurance it does get easier to live with. Xxx

  • Hi Cathy,

    I have two son's and they both have alpha 1, my youngest was ill as a baby and we were sent to kings and after lots of tests they diagnosed alpha 1 he was 4 months, after this me and my husband got tested and were both carriers. We were advised to get our other son tested we thought he would be fine as he has not had any problems, but it turns out he has it too, we were devastated when we found out about the youngest didn't know anything about it or what the future held. It was about 5 months after that we found out about the oldest even though the hit us hard too we knew alot more about it so it didn't seem quite so bad just unfair really! We do just live day to day and just make the most of the boys while they are well as you never know what might be around the corner. We have just been to an information day in Bristol organised by the alpha 1 awareness charity as it is the 50th anniversary this year of finding alpha 1, it was really interesting they had a speaker called professor David Lomas who has been working on a cure for alpha 1 for 20 years they have done alot or research on stem cell it's amazing what they have done, they have also done other research in medicines that could someday be a cure. It was a very positive day and hopefully this will happen in our children's lifetime.

    Lisa.

  • Hi Cathy,

    I also have a 3 year old boy with alpha-1 he was diagnosed at 7 weeks.. Me and my partner are both carriers but went on to have a healthy baby boy this year (chances of that) Kody is actually doing well ATM probably for the first time ever he is striving :) but he hasn't had it easy I'll tell you

    that! If you want to ask any questions fire ahead that's what we are here for :)

    rvhliversupportgroup.org/st...

    That's kodys story, it needs updated as a lot has went on in the last year but it will give you a bit of an insight :)

    Megan x

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