Posted By Posting
Jun 26, 2009
storywriter
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Marlana
(mar-lay-na)
new here... just looking for pople who can relate
Hi everyone -- I just found this website and forum. My name is Marlana (pronounced mar-lay-na). I have 2 kids, my older one (Elijah) just turned 2 years old, and my little one (AJ) will be 10 months old this weekend. AJ is the one with moderate-severe GERD (his regular pedi says moderate, GI Specialist says severe). We're still going round and round trying to help him. They just recently switched him to Prevacid and upped his Reglan dosage. We've seen great improvement with Prevacid vs when he was just on Zantac & Reglan, but he still has some struggles with reflux symptoms (especially at night time and naps). Well, I just wanted to say hello and hope to find a few people who can relate to what we are going through here!
Jun 26, 2009
storywriter
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Marlana
(mar-lay-na)
I also forgot to add... AJ goes against all the usual "statistics," for severe GERD according to his GI specialist. Despite his issues with reflux and how much he spits up, he still has gained a tremendous amount of weight and by his 6 month apointment already pushed up to 95th and 99th percentile for his weight. His GI doc is floored every time he sees his weight check. But at the same time, I can't get him to touch any baby food with a 10 ft pole! We give him our food to munch on (even though he's toothless), but he mushes it up and seems to enjoy himself... it seems strange! I don't know if he's picky, if it's a reflux thing, or just wants our food. Anyone know?
Jun 26, 2009
johnniesnewmommy
Welcome- You have found the right place. Everyone is terrific and the advise is wonderful. I just want to comment that If he is willing to eat regular table food- that is amazing. So many of these kids wont eat ANYTHING! I have 1 of them, he is having to start therapy to get him to try to eat. So chances are if he will eat table food just keep giving it to him. You might modify it some to make sure it's as healthy as possible. Does he have allergies? Sleep and nap times are always the hardest for us. Even though he is elevated in his crib he wakes often and gets really congested. I don't think it would matter if he was hung straight up and down from the ceiling - he would still get that way. Just so everyone knows, I would NEVER do that. LOL In my opinion, I think it has more to do with the fact that he relaxes when he sleeps so it allows the mucus to collect. It is horrible if he gets a chance to lay flat though. Just know we are here for you!
Jun 26, 2009
storywriter
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Marlana
(mar-lay-na)
Thanks for the response! I'm hoping the food thing sticks for him! His pediatrician seems optimistic about it... thinks the only reason he never wanted baby food was because his older brother wasn't eating baby food. I think it's funny that even before they turn one, their personalities come through and he's already wanting to do things his brother does! As for allergies, he doesn't appear to have any, but that's not to say he doesn't - they haven't done any tests for allergies, per say. When he was about a month old they tried Nutramigen (which worked great for my older son because he was "colicky," but no real signs of reflux other than that). We added the rice cereal to Nutramigen and AJ (reflux baby) just did terribly WORSE, so we went back to Enfamil AR and that seems to have had the most luck.. I don't know if there is any formula that would help more than AR if he's not milk sensitive. We're still trying to figure out how to get him 100% (as I type this, he just had a bottle and is incredibly upset now, throwing himself back!) He has good days and bad days... and this really should have been more taken care of, since he was diagnosed at 3 weeks old, but we've had some terrible experiences with the GI doctor's medical office and the Children's Hospital -- losing paperwork, nurses ignoring doctor's "stat" orders, losing TEST RESULTS.... just awful! I finally called and filed a complaint with patient relations earlier this week. Nearly 10 months of having my kid treated like "a number" with GERD as bad as his is unacceptable! (And lucky for me, the person in Patient Relations agreed!) Hopefully we'll start seeing him treated better now, and not just shuffled around like old papers!
Jun 26, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
Maybe the Nutramigen would have worked better without the rice in it. The rice seems to be a huge irritant to these babies.

The formulas that work best are Nutramigen/Alimentum or ELecare

If you want to add cereal, oatmeal works best.

Katie doesn't have milk issues but did fabulous on Nutramigen.

Check with your
doctor first!