Babycj

[Babycj2018]

Hello everybody! It makes me real happy to hear an not alone dealing with my sons Alagille Syndrome possibly! He was born at 33 weeks and 6 days so it has been a struggle he was in NICU for a whole month will be three months in two days and we are still stuck in trying to know what’s going they are still waiting on genetics but either way he’s showing facial features and heart problems and liver issues as well! It’s been so hard and scary for me he’s my first and first time ever hearing about this syndrome that just makes me question his future😔

[Declansmum]

My son had blood taken for genetics test and only 3 months later has it been tested. We're waiting on the results too. Was your baby put on special formula? I was told to stop breast feeding as he couldn't break down the fats in my breast milk. He's on peptijunior now and doing really well. I hope your son gets better too. It's a real struggle, I know. Make sure you get lots of rest yourself. Where are you from?

[Babycj2018 in reply to Declansmum]

Hello yes my son was changed to elecare it was the only formula he could tolerate due to a cow milks allergy! We are struggling very much because they find more and more as he grows he will have to go through heart catheterization due to pulmonary stenosis. There is still no set and stone answer about AGS, but his health indicates it’s there! And we are from New Mexico and it’s so hard to get treatment here since it’s a rare disease they really haven’t had many cases of it so it’s been one of the hardest struggles I’ve ever faced in life, but it’s one that’s totally worth it! I hope your son gets better too and has no problems like mine! Where are you from? And has your son had any findings that conclude?

[Declansmum in reply to Babycj2018]

My son has all the diagnostic criteria. Facies, butterfly spine, posterior embrotoxicosis, pulmonary stenosis and bile duct paucity. His most obvious problem at the time was severe vomiting, failure to thrive and jaundice. His conjugated bilirubin was elevated and then they ran tests and found a heart murmur which led to a whole myriad of tests being done, leading to this diagnosis. The gastroenterologist is now is primary doctor but he still has to see his cardiologist and opthalmologist every 6 months. I don't know for how long but I don't see it ending anytime soon. There's a big spectrum of the severity of alagille's so I'm hoping our sons are on the lowest end. Has your son's jaundice improved? I'm from Melbourne, Australia. We're very fortunate healthcare is free here. Is moving an option for you?

[Babycj2018 in reply to Declansmum]

Awwwwwwww i hope your baby gets better and all gets easier for you! And my son so far only has heart murmur and liver condition we are just waiting for genetics but I’m afraid as he grows he developes other things! And I’ve thought about it sad thing is that i don’t know where. I’ve been moved to Denver’s children’s hospital but nothing was resolved there either!

[Babycj2018 in reply to Babycj2018]

And his jaundice is getting worst little by little😔

[Declansmum in reply to Babycj2018]

There's an upcoming meeting in Cincinnati children's hospital.

"The 8th International Symposium and Scientific Meeting on Alagille Syndrome is the largest gathering of ALGS families, researchers and industry professionals in the world.

Join us and lend your voice to improve research and collaborate on real advancements in the science of treatments and a cure for ALGS.

We look forward to Connecting the Pieces with you."

I found alagille.org when I initially started researching about this disease. That's from the website. The Cincinnati children hospital seem pretty switched on about this. My son is currently taking daily vitamin k for his liver and had 3 large doses of vitamin D. He's not jaundiced at this point in time. I'm not sure if it has anything to do with that and switching to peptijunior formula (extensively hydrolyzed). There was immediate improvement in his bilirubin levels and jaundice since switching. Apparently the liver doesn't need to work as hard to break down the fats. I know the fear of growing up and developing more issues but on the bright side, the cardiologist said the stenosis may improve with age as the vessels enlarge.

I hope it helps you.

[Babycj2018 in reply to Declansmum]

Thank you very much it sure does! When is that happening in Cincinnati? And sadly my son will be getting heart catheterization to enlarge his pulmonary artery cause they said it was smaller than what it was when he was born😔 now he was just given a cat scan to make sure no artery is knotted around his esophagus! And how old is your son my son is only 3 months old today!

[Babycj2018 in reply to Babycj2018]

And my son has been taking adek which is a multivitamin that includes vitamin a,d,e, and k

[Lois-Cldf Partner]

Hi can I ask if you are from the UK?