http://cdhfamily.com/?p=337 Congenital Diaphragmatic Hernia Information and Support Tue, 06 Jul 2010 17:38:22 +0000 http://wordpress.org/?v=2.9.2 hourly 1 http://cdhfamily.com/?p=337&cpage=1#comment-67 Angela Wed, 18 Nov 2009 02:27:27 +0000 http://cdhfamily.com/?p=337#comment-67 We don't have CDH, but I can talk about Prevacid. Alaina used to take it, and Alyssa takes it now. It comes in pill form and is broken down in water or formula. You need a slightly larger nipple to get thru, and if you are using Alimentum- you have to dilute the pill in water- NOT the formula. It mixes weird. with Alaina, I had no problem getting the medicine in her. I put it in one ounce of formula and boom..done and done. With Alyssa, she uses Alimentum- so I can't put it in the formula. I use a small medicine bottle-- but a lot is left after she drinks it. Apparently, this is ok-- the doctor says it seems like more than it really is. Either way-- about 4 days after starting the Prevacid- both girls did so much better! I swear by it!! We don’t have CDH, but I can talk about Prevacid. Alaina used to take it, and Alyssa takes it now. It comes in pill form and is broken down in water or formula. You need a slightly larger nipple to get thru, and if you are using Alimentum- you have to dilute the pill in water- NOT the formula. It mixes weird. with Alaina, I had no problem getting the medicine in her. I put it in one ounce of formula and boom..done and done. With Alyssa, she uses Alimentum- so I can’t put it in the formula. I use a small medicine bottle– but a lot is left after she drinks it. Apparently, this is ok– the doctor says it seems like more than it really is. Either way– about 4 days after starting the Prevacid- both girls did so much better! I swear by it!!

]]> http://cdhfamily.com/?p=337&cpage=1#comment-66 Jennifer Tenney Mon, 16 Nov 2009 14:28:15 +0000 http://cdhfamily.com/?p=337#comment-66 Dakota used to have reflux pretty bad! Yeah, I said used to. She has pretty much grown out of it *knock on wood*. However, it peaked when she was 2-3 months. While we were in the hospital, it was bad enough that she almost, almost had to have the nissen fundoplication. The nissen fundoplication is where they wrap the baby's stomach around their esophagus. What happens with a lot of LCDH babies is that because the stomach was in the chest, after the surgery, the stomach is in the right place, but the flap or connection between the stomach and esophagus is too loose (I am probably not explaining this technically correct), so the nissen procedure is used to create a tighter seal between the stomach and the esophagus to the acids cannot rise. Shands does this pretty often because Dr. Kays is very afraid of a baby with sever reflux aspirating (refluxing then breathing in the milk/stomach acids), which could cause an infection in the lungs. After this procedure they are supposed to be unable to throw up, and even unable to burp, so a g-tube is inserted at the same time (a tube going to the babies stomach with a port on the outside of their tummy). The g-tube can be used to vent air and contents. Dakota had a GI study done where she drank barium and then they watched what happened. She did have reflux shown on the study, but it was just mild enough that we got out of the hospital without the nissen/g-tube surgery by the skin of our teeths. I remember at rounds the day after the study, the pediatrician said it was up to Dr. Kays but he thought she was going to have to have the surgery. But when Dr. Kays came to talk to us he said he thought she would be okay without it .... what a relief!!!! He said he was taking into account that Dakota was RCDH so her stomach was never out of place, so he was already leaning against the procedure for us. The procedure is very common and lots of CDHers have it, but I was glad we escaped without it. Also, I am a little confused because many babies still throw up after the nissen procedure .... if someone could shed light on why, I am very curious. Anyways, instead we got to go home on reglan and zantac as well. Dakota also really learned to like her medicine. We never increased the dose, we just let her grow out of it. At her peak she was throwing up or having attacks 5 or 6 times a day, poor baby. Now, it is like once every two weeks. I first phased out her reglan, then I phased out her zantac. I still have a little zantac in the cabinet just incase, but she seems to be doing fine. Dakota used to have reflux pretty bad! Yeah, I said used to. She has pretty much grown out of it *knock on wood*. However, it peaked when she was 2-3 months.
While we were in the hospital, it was bad enough that she almost, almost had to have the nissen fundoplication. The nissen fundoplication is where they wrap the baby’s stomach around their esophagus. What happens with a lot of LCDH babies is that because the stomach was in the chest, after the surgery, the stomach is in the right place, but the flap or connection between the stomach and esophagus is too loose (I am probably not explaining this technically correct), so the nissen procedure is used to create a tighter seal between the stomach and the esophagus to the acids cannot rise. Shands does this pretty often because Dr. Kays is very afraid of a baby with sever reflux aspirating (refluxing then breathing in the milk/stomach acids), which could cause an infection in the lungs. After this procedure they are supposed to be unable to throw up, and even unable to burp, so a g-tube is inserted at the same time (a tube going to the babies stomach with a port on the outside of their tummy). The g-tube can be used to vent air and contents.
Dakota had a GI study done where she drank barium and then they watched what happened. She did have reflux shown on the study, but it was just mild enough that we got out of the hospital without the nissen/g-tube surgery by the skin of our teeths. I remember at rounds the day after the study, the pediatrician said it was up to Dr. Kays but he thought she was going to have to have the surgery. But when Dr. Kays came to talk to us he said he thought she would be okay without it …. what a relief!!!! He said he was taking into account that Dakota was RCDH so her stomach was never out of place, so he was already leaning against the procedure for us. The procedure is very common and lots of CDHers have it, but I was glad we escaped without it. Also, I am a little confused because many babies still throw up after the nissen procedure …. if someone could shed light on why, I am very curious.
Anyways, instead we got to go home on reglan and zantac as well. Dakota also really learned to like her medicine. We never increased the dose, we just let her grow out of it. At her peak she was throwing up or having attacks 5 or 6 times a day, poor baby. Now, it is like once every two weeks. I first phased out her reglan, then I phased out her zantac. I still have a little zantac in the cabinet just incase, but she seems to be doing fine.

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