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#27951 - 09/22/11 01:27 AM new diagnoses
Lizzy Offline
New member

Registered: 09/22/11
Posts: 2
Hi Everyone,
I'm a new mom to a baby with itchyosis. I feel horrible when I read some of the discussions on the forum, but also relief if that makes sense. I have a lot to read on how to take care of my son with X-link itchyosis. Currently I put CeraVe lotion on him and healing Aquaphor everyday twice a day. I also bath him daily, but I'm not sure if I should be. He has it All over his body and I'm soooo sad about this! He is such a happy baby and the biggest blessing ever in my life.
Please help me and give me advice to make sure I'm doing things right. I recently read on the forum about Aquaphor causing cancer and that makes me sick to my stomach that I could be putting my baby at this risk. Please help!!!

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#27958 - 09/22/11 04:14 PM Re: new diagnoses [Re: Lizzy]
jcarter
Unregistered


Hi.

How old is your son? What you are doing sounds great. It is the advice I was given from an experienced Mom. Make sure the bath water is lukewarm...warmer water can make the skin drier, and apply cream right after bath.

Julie
son - 4mo with XLI
2 brothers and 2 uncles with XLI

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#27959 - 09/22/11 09:23 PM Re: new diagnoses [Re: Lizzy]
MomofPrincesses Offline
Member

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
Welcome to the board, it is all so saddening and overwhelming at first but I promise it does get easier!! We used Aquafor several times a day for the first year of her life, we still use it when she goes through particularly dry spells. We also use Cerave and we love it, it is what has worked best for us!

I will say that the thing I have learned the most is there aren't any across the board right or wrong answers, its such a learning curve for each child. What works for mine, might not work for yours. That was my hardest struggle was I would ask, can I bathe her too much, can I lotion her too, can I lotion too little, and then answer I always got was "you just have to try it and see". So know that you are going to try some things and realize they don't work, or don't work well, and then you'll try things and think gosh I wish I had done that sooner! I will say this board has been the single greatest source of info anywhere, lots of us are friends on facebook and bounce ideas off each other. Most of us live all over the country so we see different docs with different ideas but all are willing to share their thoughts!

You can email me KatiNelson@ymail.com and find me on FB at Kati Hartselle Nelson and I will do whatever I can to answer your questions!!
_________________________
Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)

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#27960 - 09/22/11 10:05 PM Re: new diagnoses [Re: Anonymous]
Anonymous
Unregistered


Hi Julie,

Thanks, my son is 4 months old. It was diagnosed when he was 2 weeks old. My grandpa and uncle had it. I thought only boys could get it but from this forum I realize girls do too. I'm just really wanting to find and trust a doctor right now. I took him to the most popular derma doctor in my area and he wanted to put steroid cream all over his body. Another girl doctor spoke up and said she would never put that type of medicine on her baby. I was sooo thankful she was in the room cuz if not then I would of listen to him. I'm struggling with removing his scales. How can I loosen them up? Again, I still have a ton to read up on this site. I'm a teacher and I have to take care of two kids so I'm very busy:)

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#27961 - 09/22/11 10:07 PM Re: new diagnoses [Re: MomofPrincesses]
Anonymous
Unregistered


Thanks Kati, it is a struggle to guess at what works. I wish there was a simple answer but its clear that there isn't. I'm so thankful to get a chance to hear from other moms and use their ideas. I am on Facebook and will request you today:)...Thanks sooooo much!!

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#27968 - 09/27/11 01:04 AM Re: new diagnoses [Re: Lizzy]
cschaap Offline
Member

Registered: 07/06/09
Posts: 71
Loc: Crown Pt., Indiana
It is all so overwhelming in the beginning but know you are not alone and everyone here is so willing to help:) I was very overwhelmed with all the products recommended to try so I started with the things mentioned the most. I noticed a lot of people used Amlactin,aquaphor,dermal therapy products and some sort of over the counter cream (cetaphil,cerave,aveeno). Those are just a few:) I am also on facebook! Look me up...Candace Schaap. Bath time is key for us! Kenny gets a 45min. bath everyday and that is when we loosen up the skin and work it off the most. Hang in there:)
_________________________
My name is Candace. My son, kenny was born May 19, 2009 diagnosed with Lamellar Ichthyosis. My daughter Chloe was born June 4, 2011 unaffected.

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#27969 - 09/28/11 02:24 AM Re: new diagnoses [Re: Lizzy]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Welcome to the party!

Make sure you check out the free aquaphor thread. That one is a lifesaver when you're going through a $17 jar every week.

Unfortunately, try it and see is the best advice we can give. With 30 different types of ichthyosis, many of us are dealing with opposite problems. Netherton's skin is too thin. EHK blisters all over the place, LI leaves a trail of flakes and eye problems. XLI has the pregnancy issues as well as the skin issues, and IV folks are often told they have something that isn't even ichthyosis so end up stumbling upon us blindly.

The only stuff that's really in common is that we all have water barrier problems - lots of dehydration and overheating issues, and generally keeping the skin soft so it doesn't dry and crack. The majority of us do long baths, lots of scrubbing, add bleach to the bathwater to kill the bacteria, and find some cream or other that works for them. Beyond that, we pretty much just make it up as we go along.

Another thing you might want to look into is the FIRST foundation. They hold a family conference at the end of June every even year. Next year's will be in Denver. It is SOOOO worth it to come and spend the weekend and meet people of all ages that have been there and done that and can often answer whatever you want to know.
_________________________
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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