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MomtoAdamAndTyler

New member
After reading topic after topic I feel that is now time to join. Please fogive me if I say something that is not accurate, or if I have questions that I should know the answer to. Our family is new to CF. Like many parents of children with CF, we were not aware of being carriers. We were blessed with fraternal twin boys in February(our first children). One of our boys, Tyler, was born with MI. At that time we were told that babies born with MI have a 95% chance of having CF. After two long weeks of waiting for test results and praying that he was in the 5%, tests came back saying that he does have CF. At that time, we then sent in tests for his twin brother Adam, two weeks later the tests came back telling us that Adam is only a carrier. We are very thankful for this. Tyler spent 6 weeks in the hospital recovering from surgery and is home now and doing well. He is so happy to be home with his brother!! (and his mom and dad of course) He is just the sweetest baby, we couldn't ask for more. Tyler is doing great (showing no lung distress), he takes his enzymes and is gaining weight like a champ! He almost weighs as much as his brother. Tyler does still have a bit of jaundice, which concerns me since he is now 9 weeks old. They are monitoring it on a weekly basis, it seems to be staying around 7.1. I know babies born with MI, can have prolonged jaundice. Has anyone experienced this yourself or has your child had this? It concerns me because the potential of there being liver problems. Any information that can be provided would be great.

Just recently I have been able to start talking about Tyler and CF, and now am researching like crazy... At first I was just upset and could not get into the details, now I am realizing it is better to talk, even if your angry and sad. We are trying to focus on the positives. This site has made me feel better. There are so many of you with CF that have been living full lives and are such exceptional people, as I know Tyler will be.
 
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Ratatosk

Administrator
Staff member
We were in the same situation. Didn't know we were carriers. Our son had to have surgery because of MI. Spent 4 weeks in the NICU, home for one night and ended up in the local hospital for another two weeks on IV antibiotics because of a bug he picked up while recovering. He was put on actigall (bile salts) early on -- cherry flavored stuff three times a day. He did have elevated liver levels when he was on TPN after his surgery, but apparently things are fine now. Has your doctor suggested that for Tyler's liver problems?

I spent the first year worrying that our son would end up back in the hospital with another bowel obstruction. He was a terrible eater. Maybe he associated food with pain. Who knows. And then I was so stressed out about whether he was getting enough or too many enzymes. We'd ask what normal poop was supposed to look like and would be told "oh, you'll know". No, I don't know, that's why I'm asking.

Welcome! Liza max's mom
 
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JazzysMom

New member
Well Melissa I welcome you since I am another Melissa. Its a bit overwhelming & new so I suggest getting a log & jotting down every thought, idea, question or problem & then the answers to it. Its a good reference. Very often we dont want to talk about CF & the problems that come with it, but no matter how strong we are at some point we need to. I was dx when I was 7 & for the most part didnt have a need to talk much. Until last year & this year......eventually everyone cracks. Its best to try & teach people not to shy away from the topic. Tho this is just my opinion & I am sure you will get others that opppose mine. In the meantime take one day at a time!
 
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MomtoAdamAndTyler

New member
Thanks for sharing your story with me. It helps me realize we are not alone. Tyler was also on TPNs for some time after surgery. They did mention that this could be the problem. They say at this point it is something to watch. How long did your some have elevated liver enzymes?
 
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anonymous

New member
Welcome Melissa!

I am the mom of a 4yr old daugther with CF. My only suggestion is to try and stay as positive as you can but at the same time be realistic about it all. I also got involved with fundraising which has made me feel like I am doing something to help.

Good luck with everything!
 
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rcq925

New member
Welcome Melissa. This is a great place to come for answers to questions. There is also another board on Yahoo Groups that is all mothers to infants and toddlers with CF that may be beneficial to you. IF you go to yahoogroups.com and seach for CF Infants and Toddlers, you will find it!
 
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Ratatosk

Administrator
Staff member
I know his levels were elevated still when he had his 3 month appointment. Don't recall if they were after that -- our local clinic isn't great about telling us lab results and I always request them and have my mother-in-law review them -- she's a retired nursing instructor.

His primary physician has all his patients on actigall to keep their gallbladders happy. He's almost three and I know when they examine him, they always push on his abdomen and then remark, well, I don't feel his liver. Which I figure is a good thing.
 
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Salli

New member
Welcome Melissa, I was the same, no history of CF ever in either families and boom, there you go, my first baby - CF. It's incredibly hard to deal with in the first few weeks but as time goes on it gets a little easier. I agree with anonymous, be positive but also realistic however hard that is sometimes. Archie was jaundice for the first 8 weeks approx. and then he was fine. We didn't treat it with anything. Its great that you found this sight - I find it incredibly helpful and wealth of information which you cannot have enough of. My advice is to research everything so you know a lot about CF and find out what other people are doing so you can compare and have faith that your CF team are doing the right thing.
 
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NoExcuses

New member
You're certainly not alone.

My mom has 10 brothers and sisters. I have over 20 cousins. No one has CF but me <img src="i/expressions/face-icon-small-smile.gif" border="0">

Welcome to the forum. We're happy to have you!
 
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anonymous

New member
Welcome! Sorry to hear that your son has cf. My son was also born with meconium illeus. He was on TPN for 10 days until enemas finally cleared his intestines. They put him on Actigal before he was sent home when he was two weeks old. At three months they told me he had liver disease because his GGT numbers were still in the 400's and his liver was a bit enlarged. I was shocked. His liver enzymes GGT numbers went down to 14 within a few months after that and have stayed down. His liver is a good size and soft. I am told that is important. The one thing I have learned that there is not a lot of info about liver disease. From what I have heard others say, many are on Actigal for many years and do well. It just needs to be monitored.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
 
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CFTwins

New member
Welcome to the forum! It's good to see another "twin" mom on here. There are a few others too! My twins are 14 months old and both have CF. They are doing great (finally both gaining weight as of this month). They are fun and happy... and chasing each other all over the house. It's amazing how much they play together even when they are little. You'll love having TWO... even if now you are still getting over the sleepless nights!

Both of mine had MI and spent 2 months in the NICU. Our daughter Maren had liver problems for quite some time, but finally when they put her on Ursodile and made her go from breastfeeding to Pregestimil, it cleared up. If you ever have questions... just e-mail or post!

Stacy
 
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