Help....Baby w/CF and Reflux

[anonymous]

Hi everyone,I'm hoping someone out there has experience with a baby who has CF and Reflux. My little guy has been in the hospital for almost 7 weeks now. He is almost 6 months old and we just found out he has CF. He was diagnosed with Reflux at 10 days old and it was awful trying to keep his meals down. He was hosp. with severe edema after my ped told us nothing was wrong week after week of bringing him in because I felt something was wrong. <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> By the time we got him here, his liver was horrible and his kidneys were in shock. The dr.'s here said he was on deaths door. It's been a scary and rough ride, and we can't go home until he can keep 4 oz of formula/breastmilk down every 3 hours plus take enzymes in applesauce. Right now he takes 1-1.5oz of milk and is just starting to eat rice cereal (he hates the fruits). He gets the rest of his milk through a nj tube. I need to hear from someone that knows what I'm going through or has some advice, or hope. The docs mentioned a nissen/fundo or a permanent j-tube and both have me and my husband freaked out. We want him to have a normal life w/CF as possible and I can't see that happening with him eating via a tube in his stomach.Besides the eating issues he also has a horrible time pooping. He cries before, during, and after he goes. They don't see any blockages. And it's not hard stool. He's getting miralax and Reglan now but he strains so much trying to go. Sometimes it even makes him gag and vomit. I think the pushing causes a lot of his Reflux. He has slow motility. I don't know if this is Cf related or Reflux but the painful pooping does have his CF specialist baffled. Well sorry this is so long. I'm new at this and need some support. Anything would be appreciated.Thanks,Nedda (Hunter's mom)greg_n_nedda@juno.com

 

[Augustmoon]

Nedda,I don't know how much I can help, but I'll try <img src="i/expressions/face-icon-small-blush.gif" border="0">/ Have you tried to change his formula? What about adding rice cereal IN the bottle (this helped my daughter GREATLY). What about Zantac? These are some of the things that helped us (and others). I'm sorry you are having to go through this, I'm SURE it will get better! Sorry if I didn't help at all, just trying to think of things for you!

 

[anonymous]

Hello Friend,I know almost exactly what you are going thru. I just do not know how I can cover all the advice I want to give you thru the e-mail. I have a little boy that is almost 2 years old now. He was diagnosed almost exactly like yours. Thru reflux and lack of weight gain. This lead to 7 weeks in a hospital as well. If you want to send an e-mail to my personal acct at gerthigh44@aol.com with your phone number. I will give you the 1 to 2 hours worth of info you are requesting, as well as some good upbeat outlooks for your little one.A permanent G tube in the stomach sounds scary, but is a blessing from God. Many CF kids struggle because of lack of nutrition. With a G tube you will never have to worry if your little one is getting what is needed. Sounds scary, but is a wonderful weopon for a tired parent. We take our little one to the community pool and no one even notices (not that I give a damn) the little stomach button on my baby. Please call if you want, if not e-mail back on this site and I will do my best to assist.Andy in MD

 

[Drea]

Hi Nedda.I'm the mom of little girl with CF and reflux. My daughter was not diagnosed with either reflux or CF until she was 9 months old but she had the reflux from the begining. Rachel is on Reglan for her slow emptying and zantac for the reflux. she had to have a g-tube placed when she was 16 months old and had the nissan fundoplication then too. We hated the idea of the g-tube but when it came down to it, she needed it to gain and do well. She was just not growing and if your are not growing and your nutrition is low, the brain development can be effected. I know that you want him to have a normal life, but if his brain growth is slowed down because he doesn't get enough nutrition, he won't even have a chance at a normal life. With a g-tube, he could still be fed orally and then get the remainder of the feed through the tube. Also, with the tube you can give enzymes that way, instead of in the fruit. that is a plus too. Just remember not to depend solely on the g-tube for nutrition and he should be ok. When Rachel was little she wouldn't eat the applesauce either. try peaches or pears. the texture of the applesauce is gritty, it might be why the baby spits it out. I have a site and a page about reflux and a page about our experiences with the g-tube too. feel free to check them out at http://groups.msn.com/TeamRachelJaneAndrea

 

[anonymous]

Nedda,I know exactly how you feel. My daughter was diagnosed with reflux at 2 months and started on Zantac which helped for a little while, but then stopped. She ended up starting to aspirate formula into her lungs which landed us in the hospital for respiratory issues. After several tests, we did the Nissen Fundoplication surgery and went home thinking our problem was solved, only to land back in the hospital 2 days later with respiratory issues again and this is when the prediatric pulmonologist did the test for CF, just to rule it out. Well guess what, it was positive and our roller coaster began when she was diagnosed on 6-1-04. She had a g-tube placed after the surgery, but we only use the g-tube for burping, not feeding and we will be getting it out in the next few months when she no longer needs it for burping. My daughter has been a brand new baby since the Nissen surgery and getting the enzymes. She is now eating rice cereal and taking her enzymes and eating 6 ounce bottles of formula about every 3-4 hours. SHe is happy and content! SHe smiles all the time!! And she is gainging weight!!! SHe was born at 6 pounds 12 ounces and at the time of her surgery on 5-24-04 she weighed only 9 pounds 3 ounces. She was 9 pounds 8 ounces when we left the hospital on 6-8-04 and yesterday at her check up with the surgeon she weighed 11 pounds 11 ounces. SHe has gained over 2 pounds in three weeks! The surgery and CF diagnosis have been the answers we were searching for. Please talk with your doctors and the surgeon, the surgery may be the best option for you as well. Please feel free to e-mail me at Quaintancer15@msn.com.Becky, Mom to Hayley, born 2-20-04 with CF and Nathan, born 1-15-01 without CF

 

[anonymous]

Hi everyone, Thanks for all your input, it's great to hear from someone that has already passed some of our milestones. Hunter did take enzymes in some rice cereal mixed with breastmilk at a feeding today!! It had to be a little runny otherwise he'd gag on it as soon as it hit his tongue. Got him up to 50'cc of milk at one feeding. Between feeding him and holding him upright to prevent the vomitting, I get about 30 minutes to eat, go to the bathroom, or pump (if he doesn't fall asleep in my arms). As a result I've all but lost my milk supply. I'm lucky to get an ounce out every 3-4 hours. It has me worried because he's finally starting to eat again. Any advice on getting the supply back?My husband is against the nissen until he is at least two yrs old and has proven he's not going to outgrow the reflux. He'd rather see him with a j-tube. I like the idea of the nissen because even when he doesn't eat by mouth, if his intestines are full from a tube feed he still vomits bile, and I'd like to keep feeding him by mouth and not have to hold him 21 hours out of the day. I am afraid that it would be done for nothing because his vomiting is so forceful it would undue the fundo. I guess we won't know unless we do it. I am an awful decision maker. It takes me forever to decide what to eat or wear, so these important decisions have me on the verge of a breakdown. I've always been the type to feel guilty over the littlest things, and I just want to do what is right for him. It's hard because my husband and I don't agree at this point on what that is. I did notice everyone seems to mention a g-tube in there posts, and we were told he would need a J-tube if it was done. Is it pretty much the same thing? Same success rate ? Same mechanics? Well I really do appreciate each of your replies, thanks so much! I thank God that I've found this forum and you all!! Nedda (Hunter's mom) - 5 1/2 mo'sgreg_n_nedda@juno.com

 

[Drea]

Nedda, hi, a g-tube goes into the stomach, a gj- or j- tube goes in through the stomach and then down into the upper intestines (jejunum) If you do not do the fundo and the reflux is not at least partly controled by the meds, a j-tube would be safer than a g-tube because the feed would not sit in the stomach and then come up the esophogus, it would have bypassed the stomach all together. The problem with that is then the baby doesn't make the associations with hunger and feeding and you might have issues later on with eating/not eating. I hope this helps.Andrea