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#25255 - 10/04/09 10:23 PM I need help!
cschaap Offline
Member

Registered: 07/06/09
Posts: 71
Loc: Crown Pt., Indiana
Ok, so I thought I was on top of things and that his face and scalp were just harder to deal with. I haven't changed anything in my routine and now his arms and legs look awful! Everything is building up so fast I cant seem to keep up. Is this just how it works and there is nothing you can do about it? Am I not doing enough for him?

So many people talk about how the scales just fall off with certain products they use, I have yet to see that happen with anything i have used.
I would never ask this for myself but I will do anything for my son, so... is there a way to get financial help? Will the government help at all? I would love to try all kinds of things on kenny but there is no way I can afford to just try things, hope they work and if they don't, buy something else.

I am really confused, nervous, scared. I thought if you stuck with your routine the scales wouldn't build up as thick. We were doing good, finally got rid of that collodion layer and now it's starting all over.
_________________________
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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#25256 - 10/05/09 12:33 AM Re: I need help! [Re: cschaap]
Sideshow_bob Offline


Member

Registered: 02/11/09
Posts: 61
Loc: US, Midwest
Candace
What you are seeing is probably a seasonal peel. Lots of people with Ichthyosis "molt" with the change of seasons, usually Fall and Spring. Increase the amount of moisture you are getting into the skin, either through a second bath or extra lotioning, and set up humidifiers in the main rooms where he spends his days. This will be your first winter with the condition, and you will find that his skin changes a lot as the weather changes. Watch out for cracks in his hands and feet, and don't get too worked up about the flakes. They don't mean you are doing a bad job, or are a bad mother, it means his skin is getting rid of a dry layer. That's all.

Some people have gotten governmental assistance, but I'm not sure how they did it. There are also people on the board always willing to do a product swap if you just ask -- what are you specifically interested in? If I have some of it, I'll be glad to send you some to try out.
_________________________
6 year old daughter with CIE (non-bullous)and a non-affected infant daughter.

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#25257 - 10/05/09 02:21 AM Re: I need help! [Re: Sideshow_bob]
KimNL Offline
Member

Registered: 07/31/08
Posts: 146
Loc: Holyrood, NL, Canada
Hi Candace,
I can completely relate to what you are going through. We are in our second year with Casey right now.
She does have seasonal shedding, it seems. This past spring, she had a really terrible spell but had a great summer. And now, it seems to be coming back again. We didn't change her routine or anything like that, it just started coming off in sheets (kind of).
Previously, we tried changing her routine but ended up back with her usual routine. There is no magic cream to get rid of it all, in my limited experience - just hang in there. I know it is hard to feel you are doing everything in your power with no positive results.
Thank God for this board so we can support one another!
Good luck
Kim
_________________________
Kim
Mom to Casey born Feb 17/08(?LI/CIE), Sara born Feb 18/06, and Kaitlyn born July 2/03
Casey has been tested positive for a genetic mutation in the ICHTHYIN gene (which is indicative of either LI or CIE)


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#25259 - 10/05/09 01:30 PM Re: I need help! [Re: KimNL]
MomofPrincesses Offline
Member

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
Candace -- I am sorry you are having such a hard time, I agree its SO expensive to try all of this different stuff! Try calling the companies that make the products, explain to them your situation, and ask if they have any assistance program that might help. They will at the very least send you coupons to cut the cost down some.

We still haven't gotten rid of all the collodion on Kallie's arms and legs and I am so ready for it to be gone. You have my number, if you ever need to talk don't hesitate to call me. I can't imagine going through this with my first, not that's its easy with the second but at least I am not worried about all the first time mom things on top of this skin stuff. Hugs and hang in there!!
_________________________
Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)

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#25260 - 10/05/09 05:12 PM Re: I need help! [Re: MomofPrincesses]
cschaap Offline
Member

Registered: 07/06/09
Posts: 71
Loc: Crown Pt., Indiana
Thank you so much for the encouragement! Everyone is always so kind and extremely helpful. I feel a little embarrassed that I get overwhelmed and worry so much. I really feel so blessed just to have Kenny, but my heart just breaks to see him go through this.
Thank you so much for responding to me and helping me through this. I am so thankful to have people to talk to who understand:) I will definitely try calling the companies, good idea, thanks!
_________________________
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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#25266 - 10/07/09 01:13 PM Re: I need help! [Re: cschaap]
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
I have two things to throw out there for your consideration... The big one is that I have noticed over the years that I develop an "immunity" to some products. I have had products that melted the scales off me like magic and then one day, it just doesn't work anymore. Sometimes you have to change around to keep the good results going.
I don't know anything about the state that you live in, but in Michigan, they do not combine their disability money with social security. What that means is that if you are disabled, you get a check from the state and a check from social security. I don't get SSI, but I do get a state disability check every month. It's nowhere near as difficult to apply for as SSI and it helps pay for the stuff I need for my skin.
Every state has a "rehabilitation" commission meant to help people with a disability (even Ichthyosis)and they may be able to point you in the right direction. Check out your state's website and search on disability and see what resources you can find!

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#25272 - 10/08/09 02:32 PM Re: I need help! [Re: Glori]
MomofPrincesses Offline
Member

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
Wow that's interesting, I might have to check into that for Kallie.
_________________________
Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)

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