New member w/son with NS

Posted by: wbreen

New member w/son with NS - 01/17/08 04:29 AM

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!
Posted by: CShell

Re: New member w/son with NS - 01/17/08 07:01 PM

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][/img]

You can post pictures by first creating an account with a photo hosting website (like; 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:
Posted by: texlex99_dup1

Re: New member w/son with NS - 01/17/08 08:57 PM

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,
Posted by: wbreen

Re: New member w/son with NS - 01/18/08 01:51 AM

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!
Posted by: Hearsay

Re: New member w/son with NS - 01/18/08 03:57 AM

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.

Posted by: wbreen

Re: New member w/son with NS - 01/18/08 04:11 AM

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][/img]
It's really hard for him missing so much of Tyler's first year.
Posted by: momof3

Re: New member w/son with NS - 01/18/08 07:22 AM

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!

Posted by: immystique

Re: New member w/son with NS - 01/18/08 02:56 PM

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

Re: New member w/son with NS - 01/18/08 03:20 PM

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).]
Posted by: wbreen

Re: New member w/son with NS - 01/18/08 04:44 PM

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][/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).]
Posted by: CShell

Re: New member w/son with NS - 01/18/08 05:39 PM

Funny you should mention the vomiting; Julia had projectile vomiting issues, and I know at least 1 other kid with NS that has as well. Jules was on Prevacid for 3-4 months, and we slowly weaned her off and so far so good. She had an upper GI done and they couldn't find anything wrong, so the docs assumed it was either reflux or a learned behavioral thing (I mentioned in my previous post her issues with eating).

I'm not sure about the gas! We have very little experience with baby food here, we've gone straight to introducing table foods lol It could be the formula, have you tried something hypoallergenic?
Posted by: wbreen

Re: New member w/son with NS - 01/18/08 06:04 PM

Yeah, we tried some of those hypoallergenic formulas, but he would NOT drink them! I don't blame him; have you tasted them?! Blah! Maybe if I added some chocolate syrup [img][/img]
Posted by: Elizas mom08

Re: New member w/son with NS - 01/18/08 11:10 PM

My child is 9 mos. old and they believe she has C.I.E and she dosen't eat either she should be eating baby food 3 times a day but we are just now working on 2 times a day she was really gassy and she would get constapated often so the doctor put her on MiraLax

[This message has been edited by Elizas mom08 (edited January 18, 2008).]
Posted by: aylasmom

Re: New member w/son with NS - 01/20/08 12:20 AM

Hi- I thought I would say hello since I am also in Michigan.My daughter Ayla is 20 months old with CIE. Where is Dorr?? We are near Pontiac- Welcome to the board- Your little one is a cutie! Dawnn
Posted by: wbreen

Re: New member w/son with NS - 01/20/08 01:41 AM

Hi Dawnn!
Dorr is a small community in-between Kalamazoo and Grand Rapids. Very country and very lovely. I would love to see pics of your little one sometime! By the way, do you know of any good derms here in Michigan? I think mine is a total idiot. She's clueless when it comes to ichthyosis!
Posted by: aylasmom

Re: New member w/son with NS - 01/20/08 03:08 AM

Personally I haven't found dermatologists very useful, and we actually have stopped going altogether. The one we keep around for good measure is the Head of Pediatric Dermatology at Henry Ford Hospital (Tor Schwayder). He was recommended to us by another derm. He is slightly more knowledgeable, and doesn't simply regurgitate whatever he just read after googling "ichthyosis" on the web...(LOL!) University of Michigan is where we started out. Ayla was transferred to the NICU there after birth. It's a great hopsital, but they told us right off the bat that Ayla was the first collodion baby they had treated in quite some time. I just started a new job though (I am a nurse tech in the birthing center where Ayla was born), and I am going to need to utilize a Detroit Medical Center affiliated doctor, so I will let you know if I stumble across a good one. Sorry that wasn't very helpful. Here is a link (if I copied it correctly) to a recent thread with pics of Ayla. She is 20 months old.
Posted by: TMPOL_dup1

Re: New member w/son with NS - 01/20/08 06:16 PM

Here's a pic of Myles and I, i hope this works....

Myles' Mom
Myles born a collodion baby
Lamellar Ichthyosis
Posted by: wbreen

Re: New member w/son with NS - 01/20/08 08:00 PM


Your daughter is adorable! I can't even tell she has anything wrong with her skin from those pics!
Are you guys planning on going to the conference in Chicago this year? If so, I hope to see you there! Oh, and thanks for the info on your dermatologist experiences. From what I'm gathering on the BB, my experience is not too uncommon, unfortunately.

Nice to meet you! Love your little guys cheeks! How old is he?

Posted by: BraedensMom

Re: New member w/son with NS - 01/20/08 08:04 PM

Hello Wbreen,
Just wanted to welcome you. I have a son who is 8 almost 9 who has nethertons syndrome. WE have been through alot but I can tell you it gets so much better as they get older. Braedens skin has improved sooo much. On his really good days his skin looks totally.
He is a normal healthy Boy, he is very inteligent and started playing Basketball this year. He is small for his age but that has never held him back. His nickname in the neighborhood is Big "B" .If you should ever have any questions please feel free to e-mail me at anytime. Tammy
Posted by: wbreen

Re: New member w/son with NS - 01/20/08 11:29 PM


Knowing that it gets better with time does make me feel better about it all, thanks! I probably will take you up on the emailing! I'm happy for you that Braeden is doing so well!