I think my Grandson has Biliary Atresia. Looking for information. Hopefully some positive stories. What to expect. First plan of action.
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@jeffsmock – Welcome to Connect!
How old is your grandson? What has happened to make biliary atresia a likely diagnosis?
You and the parents must be so worried.
Where is he being evaluated?
If it’s diagnosed early there is a great chance he will develop normally. Unfortunately, the best outcome involves a liver transplant.
Let’s see if someone else will respond to your post.
Grandson is a little over 1 month. They are from Cedar falls Iowa. Couldn't get him to gain weight, he actually lost some. His is stool white or cream colored. The had said maybe his gallbladder and liver aren't communicateing very well . More blood test this week.
Poor little boy! I’m so sorry. It must be very scary for the parents.
Is he at a major university hospital?
No he is not the hospital. Waiting for blood work. Thank you for asking.
Here is one link where you can learn more about the condition:
Thank you very much. As I am trying to get my wife into Mayo too.
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That's awful about your poor wife and grandson! But you can't get any better place for care for both of them than the Mayo Clinic! I live in Washington State so it's impossible for me or family members to go there but we do use their website for medical information. It's been very helpful.
That's too bad about your wife losing weight! Has she tried eating ice cream, pudding or custard? Those would possibly be soothing and easy on her stomach.
I'll remember you all in my prayers.
Thank you very much. Yes I tried to give my what she wants to eat. She doesn't have a appetite . I kinda have to force her to eat a couple of bites before I give her any meds. I pray my grandson is getting better, we will know more after his new blood work and ultrasound. Thank you again.
I understand what your wife is going through by not having an appetite. I'm 76 but when I was 26 I had the most awful migraine headaches! I also had no appetite due to the medications that I was taking for my migraine pain. I was taking Meprobamate and Tylonel with Codeine #4 every four hours. I lost a lot of weight and simply had no appetite. My mom would fix me a steak which I just loved and I could only take about 3 bites and I would feel full and couldn't eat anymore. Your wife is probably experiencing the same type of thing. You want to eat but you just can't eat much. Mom and I prayed for 2 years before one day the headaches were simply gone and never returned; thanks to God. I returned to normal and gained my weight back. I never had to take another pill for Migraine pain. You might want to research the medications your wife is taking to see if they may be causing her appetite to disappear. (You can do this with confidence on the Mayo Clinic website.) If you find that any of her medications have that side effect maybe her doctor could prescribe another similar medication without that side effect.
Best wishes and I'll remember you all in my prayers.
Thank you very much. Yes she on a lot of meds . Some can affect her apitite. They have switched what they could. Thank you for the prayers. I pray all the time.
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