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#15967 - 07/21/08 09:37 PM What kind of ichthyosis?
LittleMia Offline
Junior Member

Registered: 07/21/08
Posts: 3
Loc: Fairfax, VA, US
>>Please note that we made a few changes to our original post here. Thanks, all, for your support.<<

Hello everyone. My husband and I have been reading this forum since our baby was born but never send any message. I just decided to register now and just let you know our situation.

First, I wanted to thank all of you for this wonderful forum. It helps me a lot when I feel bad or think that I did something wrong or when I ask why my little baby, why not me? Is she going to suffer when she grows up? Is she going to feel rejected? I know we are not alone and that we are lucky that our baby is doing well.

Our baby girl, Mia, was born with ichthyosis. Although the doctors first told us that she might have KID syndrome, after waiting for 3 months to take vision and hearing testing, they have discarded that. Thanks to God.

She is now almost 10-months old but we donít know yet what kind of ich she has. We live in Fairfax, VA and have a dermatologist checking on her, but so far after almost 6 visits, he hasnít told us anything yet or given us any special treatment. He only says that she has a "mild case."

Her skin is dry and she has very marked lines in her hands, inner elbows, underarms, neck, and tummy. These areas have the lined and wrinkled look of elephant skin. Her palms and soles are the areas which peel the most. Her back and bottom look almost normal and feel almost as smooth as our skin. She hasn't ever bled or blistered, and her skin has never opened at any of the lines. So far, we can see that she sweats easily but only visibly does so on her nose. We never see her sweat in other areas, though the bed sometimes feels humid under her back and head when it's warmer in the house at night. We've been careful in the summer heat, but she has not shown classic warning signs of overheating. We'll have to watch her as she becomes more active and independent, I'm sure. Iíll try to post a picture of her, so you can see her.

Anybody who sees her may think that she is a ďnormalĒ baby. However, when you get closer and touch her is when you notice that something is not okay with her skin.

Currently, we only apply on her over the counter cream Cetaphil (actually the walmart version) once a day, per doctor recommendations. It seems to keep her moist enough for her skin to appear as we describe it. We started with Aquaphor, then Cerave and now Cetaphil. Her skin looks better now in summer but still we cannot skip a day without the cream because then it gets drier. She gets cream after a bath, of course, whenever that happens. The dermatologist said that going to the pool should not be a problem, and she has shown no ill effects of her trips there other than extra wrinkling while in the water. After a bath and cream, she's as usual.

We have our next appointment with the dermatologist on August 12th and this time my husband and I want to get more answers about her type and the best treatment for her. We donít have any problem in our skins. None of our families have any case of ich that we know.

Is there any way to get genetic testing done to find out her type of ich? Is it recommended? Should it be only for her or for the three of us? Is this kind of testing covered by regular insurance policies in any of your experience?

Best,
Yesi, Matt and Mia

[This message has been edited by LittleMia (edited July 21, 2008).]

[This message has been edited by LittleMia (edited July 21, 2008).]

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#15968 - 07/22/08 12:24 AM Re: What kind of ichthyosis?
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
It would be hard to figure out what type she has without a photo and a little more information. Was she born with a Collodion Membrane? Does she blister? Does she have any darker scales? Fine white scales and flaking?

I can tell you that cream once a day is probably not going to do it. We also use Cetaphil cream but we use it ON TOP of a lotion. I honestly can't imagine that alone would do much of anything for my kids let alone just once a day. The best thing we ever did was find a good lotion. Lotion sinks into the skin and then to keep it there during the day, the cream is great. At night we use lotion again and to hold it in during the night we use Aquaphor. I can't imagine life without Aquaphor and a good lotion. Frequently dermatologists have no clue what they're talking about when it comes to a rare form of Ichthyosis. They do their best but they just don't know in many cases. When our son was born we were told to stick with Aquaphor. After some time had passed and we felt more comfortable stepping out of doctor recommendations, we found a good lotion (we like Curel Ultra Healing but you may find something you like better...just do a search for lotions and you will find a ton of ideas). Our son never looked better when we finally started to use a lotion...best thing we ever did! We used lotion all during the day and Aquaphor at night. In the past two years or so we've been using the Cetaphil cream during the day on top of the lotion. Always be sure to put something on her after a bath. Whether that be Aquaphor or a cream...something should always but used after a bath. I suspect you will see a great deal of improvement if you use something at the very least twice a day (once in the morning and once at night) and incorporate a lotion into your routine (maybe Aquaphor for night time as well).
Feel free to email me if you have any other questions.
Best of Luck to you!
Lisa
Lisa
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#15969 - 07/22/08 02:04 AM Re: What kind of ichthyosis?
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
This is not to make you feel worse ... When you doctor says "mild," this is probably incorrect. Mild and severe are relative. Everything is milder compared to Harlequin, but this relationship has no practical application for your case. There is one absolute standard of "mild," and that would be "mild" Vulgaris, which is what the vast majority of ich cases are. But mild Vulgaris, by virtue of it being "mild," does not have heat intolerance, sweating or overheating issues. Most people with mild Vulgaris do not have concerns or issues to trouble them to come on this website and this board. Once in a while we get some inquiry about cosmetic issues related to the scales or lines or "mosaic shins" on the lower legs from those with mild Vulgaris. But, generally, that is the extent of their involvement.

When there are overheating issues or blisters issues, related to any type of ich, I would consider it "severe." When your child seems to have overheating issues and can sweat on the nose only, you have a severe case, probably Li or CIE. I would begin with this assumption prior to any genetic test confirmation.

I cannot answer if there is a range of severity within Li or CIE. But as long as there is ANY overheating issues involved, then for all practical purposes the case would be severe.

Good luck to you.
_________________________
Don't ever lose hope when
there is a promised land, and "sweat" dreams

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#15970 - 07/22/08 03:04 AM Re: What kind of ichthyosis?
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Yesi, Matt, and Mia
Have you contacted our Foundation for Ichthyosis and Related Skin Types? The website is www.scalyskin.org and you can contact Jean Pickford or Moureen Wenik at info@scalyskin.org or phone (215)619-0670.They can send you out information about ichthyosis. Also we have an Ichthyosis Support Network that can put you in touch with ichthyosis families. I hope you get the answers you need. Take care.
Sincerely,
Les
_________________________
Les Avakian

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#15971 - 07/24/08 07:33 PM Re: What kind of ichthyosis?
scotsmum Offline
Member

Registered: 08/25/07
Posts: 88
Loc: scotland, uk
Hi, I would agree sounds most like CIE, my 3yr old son has CIE, although we have never been given a definite diagnosis-derms have said most likely CIE. From reading others posts and also seeing some pictures I do tend to describe my sons as a mild case of CIE, he was not collodian, is not v red and doesn't peel much. But although I say mild CIE it is not mild in general, Promiseland is right 'mild' vulgaris is prob the only ich that can be classed as mild. My son is v dry and itchy all the time, has fine white scaling, some thickened areas and v scaly scalp. I use cream/ointment 2-3 times daily and sometimes through the night if he is really itchy. My son also only sweats visibly on his nose, so far. What I also notice when I, for example, hold another childs hand is how soft their skin is.
The FIRST website mentioned is good and has descriptions under types although there can be variations between individuals with same type. Prob good idea to maybe repeat your post on general discussion.
best wishes

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#22300 - 08/09/08 04:07 AM Re: What kind of ichthyosis? [Re: scotsmum]
TMPOL Offline
Member

Registered: 07/30/08
Posts: 44
Loc: Collingwood, Ontario, Canada
Hi, My son Myles "Master Myles" to some, was born with a Collodion membrane and subsequently was diagnosed with Lamellar.

Contrary to what was said above, Myles does have a "mild case" as anyone who saw him at the conference can confess. Laben, Jackson also have "mile cases". and it was great to see these wonderful children interact.

Myles was tested at 7 months and they isolated the mutated gene that Rene and I passed on to him. The test is not at all harmful and i would completely recommend it.

We live in Canada and therefore it is covered by our provinicial health care system (did i mention we pay 13% sales tax on EVERTHING to have this system?)

I have not seen pics but would welcome them - you can see many pics of Myles on here and you tell me if Myles resembles Mia.

This is the best place in the whole world of ICH and i feel so grateful for the BB - if it wasn't for this BB, we would be lost.

Kisses to all
T

_________________________
Tara, Rene and Myles
Myles born May 22nd 2007
Lamellar Ichthyosis

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#22302 - 08/09/08 02:52 PM Re: What kind of ichthyosis? [Re: LittleMia]
MISFIT2012 Offline
Member

Registered: 08/09/08
Posts: 20
Loc: Utah
They can do a skin biopsy, but trust me I had one done as a kid they are a bit painful. As far as I know that's the only way to know for sure. I have lamellar and it is pretty obvious. I get the dark "plate" scales everywhere. From what you have said I dont think your baby has lamellar.
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