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#12610 - 07/09/08 12:43 AM Casey's face
KimNL_dup1 Offline
Member

Registered: 04/16/08
Posts: 34
Loc: Holyrood, Newfoundland, Canada
Hi all, Looking for some more advice here.
Casey is now 4 1/2 months old and we have our good and bad spurts with her skin condition.

Right now, it seems her face (which was really good) is now very ?papery for lack of a better word. Like crepe paper. I don't know what to do for it but it gets quite crinkly.

We are using cetaphil cream with glycerine and finishing up with Aquaphor (over face and body). Her wrists and ankles have gotten dry again too. I don't know why. It's been pretty humid here where we live.

We are still waiting for the next round of genetic testing results ( should have in next 2 weeks) but it seems more like CIE than lamellar, based on clinical presentation.

Anyway, any advice would be GREATLY appreciated.

Also, she seems to be itching now, which she never did before. What do you all do for that? I assume it's due to the higher temps right now, though we have airconditioning and humidity control in our house!

Sorry for the long note, but I need help, again!!

I'm loving the pics from the conference. I'm hoping to attend next time.

Thanks again,
Kim

Mom to Casey (?LI/?CIE), Sara and Kaitlyn.
_________________________
Mom to Casey (LI) - 2 months, Sara (2 yrs) and Kaitlyn (4 yrs)

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#12611 - 07/09/08 03:19 AM Re: Casey's face
ericalopez Offline
Member

Registered: 12/22/07
Posts: 38
Loc: san antonio, tx
My daughter has what seems to be lamellar. I bathe her in Johnsons baby oil body wash. After bath, I use 12percent lactic acid on all over except diaper area. Then I use gold bond softening lotion with shea butter and top that off with aquaphor for the barrier. The gold bond will help with the crinkling due to it softens the skin so it is more flexible. Hope this helps.
[img]http://i284.photobucket.com/albums/ll30/edgar1979erica/newpiclauren.jpg[/img]

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erica lopez
lauren 11-12-07
collodion baby
_________________________
erica lopez
daughter with LI-Lauren 11-12-07

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#12612 - 07/09/08 03:05 PM Re: Casey's face
KimNL_dup1 Offline
Member

Registered: 04/16/08
Posts: 34
Loc: Holyrood, Newfoundland, Canada
thanks erica,
when did you start using the lactic acid.

I was wnodering if casey was too young for the stronger stuff.

any advice on the itching?

Thanks,
Kim

BTW, Lauren is beautiful!

[This message has been edited by KimNL (edited July 09, 2008).]
_________________________
Mom to Casey (LI) - 2 months, Sara (2 yrs) and Kaitlyn (4 yrs)

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#12613 - 07/09/08 05:53 PM Re: Casey's face
charmed7 Offline
Member

Registered: 03/07/04
Posts: 165
Loc: Hartford, CT
I used to put aveeno oatmeal bath in my son's bathtub for the itching. Also, when it's hot and humid, he would get a few baths a day, which seems to help with the skin build up. There is also an Oil of Olay product that is a serum. That seems to help my son with the flakes on his face.

Charmed
_________________________
I have a gifted 14 year old boy with X-Link Ichthyosis, Type I Diabetes and Bipolor Disorder.
I have a 7 year old girl who is uncanningly healthy
I have a spunky 1 year old who doesn't quite understand the word "No" yet.

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#12614 - 07/12/08 03:28 AM Re: Casey's face
ericalopez Offline
Member

Registered: 12/22/07
Posts: 38
Loc: san antonio, tx
Her derm told us to use the lactic acid when she was about 4mnts and it has made a world of difference. I also due the routine 2x a day,am and pm. I let her sit in the tub for about half an hour, I feed her during her bath, thats keeps her occupied but I dont know how long that will last(haha). She still itches sometimes, when she does I just reapply the gold bond mixed with aquaphor during the day. You will be amazed with lactic acid, I also find the RX one works better than amlactic which is over the counter. Best wishes and hope this helps. BTW the pic was taken when she was 6mnts.

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erica lopez
lauren 11-12-07
collodion baby
_________________________
erica lopez
daughter with LI-Lauren 11-12-07

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#12615 - 07/12/08 03:04 PM Re: Casey's face
KimNL_dup1 Offline
Member

Registered: 04/16/08
Posts: 34
Loc: Holyrood, Newfoundland, Canada
Thanks folks,
I am using the Aveeno in her bath, which I think helps but the itching seems to be really bothering just recently and we haven't done anything new.

Erica, is the lactic acid mixed with anything? Does it have a "product name" or just ask for lactic acid?

I have an appt with our derm at the end of July so hopefully, he'll prescribe the lactic acid. ALthough, he seems to be want to be ultra-conservative.

Wish me luck!

Cheers, Kim
_________________________
Mom to Casey (LI) - 2 months, Sara (2 yrs) and Kaitlyn (4 yrs)

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#12616 - 07/12/08 04:50 PM Re: Casey's face
jds Offline
Member

Registered: 12/23/05
Posts: 432
Loc: Austin, Texas
You can use AmLactin which is the generic form of LacHydrin. I do not know the lactic acid content but it is over the counter.

As far as a cream with acids in them to help remove scale, when JD was younger we used Calmol 20 or 20. You could get it at a pharmacy but it is not a perscription. It has urea in it.

You will have to try severla different acids and see which works best for you. The ones I hear mentioned most often are lactic acid (AmLactin), urea (Carmol 10/20), salycidic acid (found in St. Ives Scrub for Blemishes). With a docotor's prescription, you should be able to go to a pharmacy that will mix compounds and get exactly what you want. For example, if you think you need a slightly higher level of lactic acid... you could have the amount of lactic acid you need mixed into a lotion/emollient base (mixed with aquaphor or eucerine, etc.). You would need your doctor write out the exact percentages on the perscription.

I hope what I just said was accurate and made senses. If not, I'm sure someone else will post a better explanation.

When our little one gets itchy we use Eucerine Calming Cream or Aveeno Skin Relief with Menthol. I prefer the Aveeno because it is not as thick but the Eucerine isn't as smelly.

I know several mom's give their children benidryl (antihistimine). Sorry my spelling is horrible.



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Tammy (caregiver)
******************
toddler son
lamellar ichthyosis
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Tammy (caregiver)
******************
toddler son
lamellar ichthyosis

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#12617 - 07/13/08 02:41 AM Re: Casey's face
ericalopez Offline
Member

Registered: 12/22/07
Posts: 38
Loc: san antonio, tx
Her derm prescribed lachydrin but with ins they give me ammonium lactate cream 12 percent. It is not mixed with anything. I also forgot to mention she sleeps with a cool mist humidifier every night. At night she sleeps in sleep and play pajama, this helps keep her moist through the night(room must be cool though).

------------------
erica lopez
lauren 11-12-07
collodion baby
_________________________
erica lopez
daughter with LI-Lauren 11-12-07

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#12618 - 07/21/08 11:16 PM Re: Casey's face
KimNL_dup1 Offline
Member

Registered: 04/16/08
Posts: 34
Loc: Holyrood, Newfoundland, Canada
Thanks everyone!
Her itching seems better, not sure if it has anything to do with what I'm doing, though - lol.
I've been trying the LacHydrin for about 5 days now and her body seems MUCH better but her face only slightly. Frustrating - and now it seems her eyelids are pulling a little.
I have a derm appt next week. Hoping to have more genetic results back too!
_________________________
Mom to Casey (LI) - 2 months, Sara (2 yrs) and Kaitlyn (4 yrs)

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#22346 - 08/12/08 12:48 AM Re: Casey's face [Re: KimNL_dup1]
KimNL Offline
Member

Registered: 07/31/08
Posts: 146
Loc: Holyrood, NL, Canada
Thanks everyone.

I have a new issue now (hoping you all have some ideas here):
Just lately, Casey's face seems to have "broken out" on her forehead and into her hairline. They are raised spots, very much like tiny pimples. I'm wondering if I'm clogging her pores with her regimen? Any ideas?? ANd her face is still "crinkly" although somewhat improved with the lac-hydrin.

Update: Genetically, she is negative for the TGM1 gene and for the two ALOX genes - not sure where we go from here.

_________________________
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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