Hi everyone!

Our son Tyler is 8mths old and was finally officially diagnose with NS after DNA testing. This website is great knowing that there are others out there that have his condition and understand what we're going thru. Are any of you planning on going to the conference in Chicago this year? I was thinking of it since its not that far away from me.
Also, how do you posts pictures here? I've seen some of your children and would love to show off Tyler!

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]

Hi and welcome. My name is Becky and I'm 36 years old and I also have NS as does my brother who is 1 year older than I am.

Please feel free to email me, I would love to chat with you, and help with any questions that you may have.

Hope to hear from you soon,
Becky

Hey, thanks for replying back! Your daughter is adorable! She has such a sweet smile! During these 2 years of her life, what kind of difficulties or problems related to her NS have you had?

Thanks for showing how to upload pics! I hope you enjoy Tyler's pics. I know I enjoy looking at his cute face, but I think I might be a little biased! LOL!
Wendy
[img]http://i256.photobucket.com/albums/hh164/wbreen/tyler058.jpg[/img]
[img]http://i256.photobucket.com/albums/hh164/wbreen/tyler049b.jpg[/img]
[img]http://i256.photobucket.com/albums/hh164/wbreen/midgetylertina2.jpg[/img]
[img]http://i256.photobucket.com/albums/hh164/wbreen/MarkTyler.jpg[/img]

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

The conference seems like a great way to meet others! What kind of activities have they done at previous ones? My mother and mother-in-law plan on coming with me to the conference. My husband Mark won't be able to attend because he just began his deployment(he's the handsome fellow in the uniform w/Tyler!) He's at Ft. Hood, TX right now and then he heads over to Iraq. He won't be back home till next January [img]http://www.ichthyosis.com/ubb/frown.gif[/img]
It's really hard for him missing so much of Tyler's first year.

Welcome!! Your little Tyler is so precious! Our 3 year old son Dane is yet to be diagnosed, but NS was long in the running. It was recently ruled out, but we're still left without any definitive answers. The people on this board have helped in so many ways. I know you will find comfort and support here!

-Suzanne

How adorable! He looks like he's daddy's little man--he even has the same "hairstyle" lol!

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).]

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).]