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#14925 - 01/17/08 07:01 PM
Re: New member w/son with NS
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Member
Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
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Hi! It's good to see you here! My name's Courtney, and my 2-year-old has NS. She was diagnosed when she was 4 or 5 months old, and since then I've been hanging around this site; it's really been a life-saver. If all goes well, my husband, daughter, and I should be at the Chicago conference this summer, so perhaps we'll see you there! [img] http://www.ichthyosis.com/ubb/smile.gif[/img] You can post pictures by first creating an account with a photo hosting website (like photobucket.com); then uploading your digital pictures into your account on the website; and then copying and pasting the URL it gives you after you upload into the reply box on this website. The picture should show up then. Here's my daughter and I right around Christmas: [img] http://i90.photobucket.com/albums/k277/CShellAK/orn5.jpg[/img]
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Courtney Mom to Julia
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#14928 - 01/18/08 03:57 AM
Re: New member w/son with NS
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Member
Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
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Hi, Wendy! Welcome to the club!
I'm Jennifer. I have a husband and 2 boys with ichthyosis-en-confetti, plus an unaffected girl. I'm in Chicago and we'll be at the conference this year. In fact, I'm working hard at getting raffle prizes for the Saturday night dinner party. I hope to see you there - it really is worth the trip, especially with a little guy like you have.
Jennifer
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Jennifer Ichthyosis-en-Confetti Type 2 Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected. I also have an unaffected daughter, age 8.
email: jennifer at confettiskin dot com facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"
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#14932 - 01/18/08 03:20 PM
Re: New member w/son with NS
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Member
Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
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Tyler is such a cutie! My husband's in the Army too, we're stationed at Fort Meade in MD.
Julia had a LOT of problems in her first 1 1/2 years - particularly with failure to thrive. With NS, most kids need more calories than normal, and Julia just wouldn't grow on a regular intake. At 8 months old she was about 8lbs! Around 8 months old, we began doing night NG feeds (nasal-gastric; we would insert an NG tube at night and then take it out in the morning), and she gained weight immediately. She hasn't done the feeds for about 4 or 5 months now, and is able to take by mouth the calories she needs (which at this point is about 1,500/day!!). She's had issues with her sodium levels; pancreas function (not sure if that's related to NS or not, it's a nonissue currently, was resolved); and skin infections.
Our main issue right now is feeding - she has an oral aversion from the tube feeding, so she's in feeding therapy to learn how to eat table food. Otherwise, she's a happy, normal kid!
[This message has been edited by CShell (edited January 18, 2008).]
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Courtney Mom to Julia
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#14933 - 01/18/08 04:44 PM
Re: New member w/son with NS
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Member
Registered: 01/14/08
Posts: 32
Loc: Dorr, MI, USA
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I think the sodium thing does have to do with the NS. When Tyler was born ( he was a month early)you could tell right away something was wrong. His skin was bright red and very dry and peely. His first night at the hospital, they had a difficult time keeping his temp stable, he wasn't able to regulate it on his own. They sent him over to the Children's hospital in Grand Rapids and there they found his electrolyte levels and sodium levels were off the charts! The doctor told us he had never seen levels so high (that made us feel wonderful, NOT!) He had jaundice plus was having trouble urinating too. He was hopitalized for 10 days before they released him. By then his sodium & electrolyte levels were normal(thank god) and he was peeing normally. He was 7 lbs when he was born, and when he was released he was a little over 6 lbs. Since then he too has been slow growing. Around the age of 3 mths he began vomiting up his formula. We tried different formulas, tried adding cereal into his formula, tried burping him after every ounce, but whatever we tried it seemed to come up! His pediatrician put him on Prevacid and that seemed to help. It finally stopped around 5mths of age. He now is around 15 lbs and is a very good eater! He still spits up every now and then, but otherwise he's getting quite a belly on him [img] http://www.ichthyosis.com/ubb/smile.gif[/img] The only concern feeding-wise I have with him is that he is VERY gassy. I have never heard a kid fart so much in my entire life! I don't know if its the formula he's on (he's been on Enfamil EnfaCare) or if its the introduction of solids. Any ideas? [This message has been edited by wbreen (edited January 18, 2008).]
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