New to EHK

Posted by: Shirlil

New to EHK - 12/23/03 05:54 AM

Hi all;

My 2 1/2 week daughter Lily has been diagnosed with EHK. We really do not know what to expect. Our Dermetalogist has told us that the he cannot tell how severe or mild her case maybe. Only time will tell. Can any one tell us what a mild case or sever case maybe?
Posted by: Anonymous

Re: New to EHK - 12/23/03 01:17 PM

Shirlil,
I don't think you will be able to tell for at least a few months. A mild case would be minimal coverage on the body, usually the worst spots are any parts of the body that flex/bend, like elbows, hands, knees, feet and neck. A severe case would be like mine I suppose, pretty much total coverage of the body and very thick at times. I notice that you live in LA, so do I. I'll try and email you, my email address is keithx1@earthlink.net I'm sure I'd be able to meet with you if you would like.
Keith.
Posted by: Veronique

Re: New to EHK - 12/23/03 03:06 PM

Hello,
I never met anyone whith EHK, except my daughter Karlijn who will be 2 years old next february. So I really do not know wether she is supposed to be a mild or severe case. I do know that the soles of her feet and her hands are clean (and always were), which makes it 'mild' from our point of view, but is merely a mather of the type of EHK your dealing with. I do know that the first months where the hardest, with lots of blistering and infections, but now the EHK is mostly discomforting rather than painfull. Only problem we have is finding her good shoes. But you have some time left before you need to worry about that.. All the same: we tried leather shoes like our dermatologist advised, but found she would simply refuse to walk on them, since it hurt to much (it's the only time she gets blisters nowadays: wearing the wrong shoes or boots or socks that are too tight.), now we simply use what we know as 'surfing shoes'which are great, but too cold in winter. As it isd snowing right now, I do hope I can find some woollined boots, which I presume will be fine. Only I did not see them in size 22 yet.. (smallest I saw were 3 sizes to big). If you want to read our experiences, you find them in the 'mothers caring for..'section of this bulletin board. It was written in something of a melancholic mood, so it tends to be a bit negative, but on the whole we find the condition of Karlijns skin something we can manage (some days better than other). Hope the people she comes to contact with in the future can, too. Between the worries, don't forget to enjoy your little girl. If you like I could e-mail you some pictures of Karlijn.
Veronique
Posted by: Shirlil

Re: New to EHK - 12/23/03 03:43 PM

Thanks Keith and veroneque for the reply. It is good to find people you can talk to. At what age does the affect uaually show up and does it stop at stop point or can it keep progressing over time all her life? Also what do you guys do to control the thickening or blistering? I have heard that EHK usually does not affect the face, is this true from your experience. Any input can help.
Posted by: pauline5

Re: New to EHK - 12/23/03 04:05 PM

Hi Shirlil

My name is Pauline, and I am an adult who has EHK, when I was born, I was just very red, and fragile tissue like skin...with blisters, and infections,

But within a few years, the skin toughened up somewhat, and covered body with scales...and by the mid to late teens the scale can diminish a fair bit, but everyone is different, so it is really unfair for me to give you a generalised picture...

For now all you need to be concerned about is keeping your daughter comfortable, protecting her from hard, rough or sharp surfaces which can rip or blister the skin, keep finger nails short...

My mother would bathe me in virgin olive oil when I was a baby...Very dilluted salt baths may help, although be careful that it is not too strong...

I feel that the face is not particularly affected unless people who have EHK, have thickened souls of feet and palms of hands like myself...But really my face is the clearest of my whole body, so long as I try and keep the scale under control, and don't scratch it...

that is another thing, try and not let your daughter overheat, especially at night, this will increase the chances of her scratching herself raw, and causing the blisters to spread...

Just a cool cotton sheet should suffice...or a very very light blanket...if need be some pure cotton mittens might help prevent scratching...

If I think of anything else I will let you know...it is 3am here, should get to bed...

Regards Pauline.
Posted by: Deidra

Re: New to EHK - 12/24/03 01:57 AM

Hi Shirlil,
Congratulations on the birth of your new baby!! I am the mother of an 11 year old boy with EHK. As someone already told you, The first months are the hardest. I am so glad you found support already. I know when I first talked to other people, I thought I had met family.
Evan's condition is considered mild to moderate. His soles and palms are not affected very much. In the first months, his skin was very fragile and tore off easily. At first, we never even put Evan in a diaper. We would lay him on a waterproof pad or use cloth diapers that were wrapped over as loosely as possible. By the time he was ready to get out and about, he was able to wear disposables.
We did not have problems with infections too much that first year.
Evan's face is fairly clear. It does look dry and flaky around the mouth if it doesn't get lotioned up good every day. His joints where he bends is the thickest.
I guess that is enough for this post. Also, e-mail Keith. I have met him once at a conference and he was a great help to me and Evan just loved him and his wife Bev. Please feel free to e-mail me at dandee15@msn.com if you would like to talk some more.
Deidra
Posted by: Shirlil

Re: New to EHK - 12/24/03 05:04 PM

Hi all;

Thanks for all the posts and responses. You do not know how much you have already helped us, or maybe you do. It is amazing how little the doctors tell you, I guess they do not even know. Our doctor suggested to us to register with the "National Registery for Ichthyosis and Related Disorders". Their web site is "www.Scalyskin.org".

Veronique, I would love to see soem pictures of your son. Here is my e-mail address. rasgari@msn.com
Posted by: Veronique

Re: New to EHK - 12/28/03 02:34 PM

Hi,
Yes, Karlijn's face is pretty 'clean'as well. We did have some trouble getting the thick scales from her skull however. But when she was a few months old we started using lard to remove the worst. Which helped tremenduously but also smelled very bad... After only 2 times of using it she looked like a different baby however. I really regret we didn't take before and after pictures... When the scales where somewhat in control we stopped using lard (from the pharmacist, mind, not the butchers!)and now we use baby-oil only once a week, which is in our case sufficient to keep it to a minimum. (Just let it soak overnight and wash it out) But that will be of later concern. What I think might be of better use now is the diapering I used, and still use during the daytime. The dermatologist told us not to use cotton diapers, as I had intended to. But disposables caused terrible blistering, so me and some nurses in the hospital decided to experiment with cotton.Well you can't have your baby being naked all day outside of the hospital, can you? (well in the summertime you can..) .I'm not sure what kind of non-disposable diapers are availlable in the US, but here they mainly consist of a square piece of cotton, folded into a triangle and then pinned together. Mosly those diapers are covered whith plastic diapercovers. Needless to say those plastic coverings are out of the question. Also the egdes of the diaper tend to rub the skin to hard , but then we started to fold them 'inside out' and used tape to keep the diapers in shape. As a coverage we use very simple H-shaped pieces of fleece, which is folded around the diaper. When the skin gets a little stronger, you can even tuck the legparts in a little. Use very soft liningtissue in the diaper, so it will not rub to hard. When I wanted to have some covers (first we used a disposable several sizes to large over the cotton diaper as a coverage, which helped, but also made karlijn look like a pear with hardly any legs. Difficult to fit clothes on!) I found some US sites, one of which which was called sew-you-own-diapers. Maybe someone there might be able to help you find out what might work for your girl. I'll be sending those pictures right away.
Veronique