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#14934 - 01/18/08 05:39 PM Re: New member w/son with NS
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
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?
_________________________
Courtney
Mom to Julia

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#14935 - 01/18/08 06:04 PM Re: New member w/son with NS
wbreen Offline
Member

Registered: 01/14/08
Posts: 32
Loc: Dorr, MI, USA
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]http://www.ichthyosis.com/ubb/tongue.gif[/img]

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#14936 - 01/18/08 11:10 PM Re: New member w/son with NS
Elizas mom08 Offline
Member

Registered: 01/18/08
Posts: 55
Loc: Heartwell Nebraska US
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).]
_________________________
Lacy,Elizas mom possible C.I.E. 4-9-07
Brady 9-10-01
Hunter 7-11-05

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#14937 - 01/20/08 12:20 AM Re: New member w/son with NS
aylasmom Offline
Member

Registered: 05/29/06
Posts: 215
Loc: Waterford ,MI
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

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#14938 - 01/20/08 01:41 AM Re: New member w/son with NS
wbreen Offline
Member

Registered: 01/14/08
Posts: 32
Loc: Dorr, MI, USA
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!
Wendy

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#14939 - 01/20/08 03:08 AM Re: New member w/son with NS
aylasmom Offline
Member

Registered: 05/29/06
Posts: 215
Loc: Waterford ,MI
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. http://www.ichthyosis.com/ubb/Forum2/HTML/000980.html
Dawnn

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#14940 - 01/20/08 06:16 PM Re: New member w/son with NS
TMPOL_dup1 Offline
Member

Registered: 07/12/07
Posts: 138
Loc: Collingwood, Ontario, Canada
http://i244.photobucket.com/albums/gg5/tmpol/DSC02667.jpg

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

------------------
Myles' Mom
Myles born a collodion baby
Lamellar Ichthyosis
_________________________
Myles' Mom
Myles born a collodion baby
Lamellar Ichthyosis

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#14941 - 01/20/08 08:00 PM Re: New member w/son with NS
wbreen Offline
Member

Registered: 01/14/08
Posts: 32
Loc: Dorr, MI, USA
Dawnn,

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.

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

Wendy

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#14942 - 01/20/08 08:04 PM Re: New member w/son with NS
BraedensMom Offline
Member

Registered: 11/16/03
Posts: 55
Loc: Lincoln,Ne
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

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#14943 - 01/20/08 11:29 PM Re: New member w/son with NS
wbreen Offline
Member

Registered: 01/14/08
Posts: 32
Loc: Dorr, MI, USA
Tammy

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!

Wendy

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