CIE infant - best scalp treatment?

Posted by: adnickel

CIE infant - best scalp treatment? - 08/21/03 02:55 PM

My daughter is 8 months old and has CIE. Her scalp flaking is a constant problem and looks awful. Does anyone have any suggestions on the best scalp treatment for a baby?
Posted by: Sirena

Re: CIE infant - best scalp treatment? - 08/22/03 06:13 AM

A baby is harder to deal with when it comes to her scalp. I use a metal dog comb to comb out a lot of the scales but even doing it myself have sore spots on my head which if washed right away really hurt. You might try warm olive oil or after a long soak gently combing out scales with a mens mustache comb. I have put lac-hydrin on my head when my scalp is getting bad before I go to bed and try combing out scales in the morning. The mustache comb may be gentler and not cause sore spots. As your baby gets older it will get a little easier. As hair grows you see the scales less and it is easier to keep it under better control. It is hard to comb out any baby's or toddlers hair so don't get discouraged. I think the FIRST website or this one also had good tips for dealing with the scalp. Eight months is such a fun age, they sure keep you on your toes once they statt moving around on their own. Have fun, it goes by so quickly. My daughter starts highschool next week. As cliche as it sounds it seems like just yesterday she was eight months and already cracking me up with her wonderful personality. Enjoy andTake care!
Posted by: adnickel

Re: CIE infant - best scalp treatment? - 08/22/03 02:21 PM

Sirena, Thanks for the input. I bought some Dermarest shampoo with 3% salycic acid and after one shampoo she is so much better. I'm going to go this route for now but may try the olive oil later. Thanks for telling me it gets better... sometimes I feel so worried about what the future years will bring, esp. when she goes to school and I'm not there to lube her up all the time. And you're right, 8 months is a great age, she is so cute and just beginning to crawl. Thanks for your reply! I'm so glad I found this website.
Posted by: Lisa Marie

Re: CIE infant - best scalp treatment? - 08/22/03 03:31 PM

adnickel - I have CIE am 31 and am completely fine, as your daughter will be also. I use a lice comb to scrape the extra skin off my scalp. It works wonders. I use T-Gel, but that would be too harsh for your baby at this age. However, every now and then I put baby oil on my scalp and sleep like that. Also I put conditioner in my hair and sleep with that. I find the skin is so easy to remove in the morning. I sleep with a towel on my pillow. You could try leaving the baby oil or olive oil as someone has suggested and put sheets where your baby sleeps that aren't the greatest, so you wouldn't care if they get greasy. Just a thought. Her future will be great. As she gets older and goes to school, she'll have a bookbag or pocketbook in which to keep little bottles of lotion on. I was very active in school and don't feel as if I've ever missed out on anything.
Posted by: Sirena

Re: CIE infant - best scalp treatment? - 08/23/03 04:01 AM

I am glad you found something you like. Is that shampoo a prerscription or over the counter? I have not tried that one. Is it stinky like the tar shampoos? It would be great if I could find something that prevents the build up of scales.
I have CIE too and almost adopted a little girl from India with lamellar ichthyosis. I worked on it for a year and found myself pretty attached to her even though I had not met her yet,. What I learned is that being a mother of a child with ichthyosis is so much harder than having it. Your daughter will do great with your love and support. It was my mom who got me throughj the rough times and I will be eternally grateful for that I had someone who loved me and adored me so much even though I was not perfect, she made me feel like I was better than perfect. She will have a wonderful life because she has you.
Take care,
S
Posted by: pauline5

Re: CIE infant - best scalp treatment? - 08/23/03 11:21 AM

Adnickel...

Sorry I didn't post to this earlier, my computer is not working at present, I am on another one right now...I was also going to suggest rubbing some olive oil into your daughter's scalp and leaving it in overnight...

And I didn't know that there was shampoo around which has sal acid in it...I must check this out for myself...I am glad it is helping her...

And everyone is so right when they tell you that your daughter will improve enormously with age...Things get much easier with age, and with experimentation and experience. Don't worry or look too far into the future, at this stage, just take one day at a time, and do everything you can to make her life comfortable and wonderful right this moment...

Regards Pauline.
Posted by: Angel

Re: CIE infant - best scalp treatment? - 08/25/03 03:02 AM

Hi Adnickel!
I also have an 8 month (and a 24 month) old daughter with Ichthyosis. They were originally diagnosed with Lamellar, but now have to see another dermatologist, as their current one believes they actually may have CIE. I just wanted to mention that you should tell your doctor that you are using the shampoo with Salicylic Acid in it, especially if your child is going to get certain vaccinations. I believe that it was when my oldest daughter had the Chicken Pox vaccination that I could not use the Salicylic Acid shampoo. I believe that it has something to do with the fact that Salicyclic Acid is the equivalent of Aspirin and should not be used in combination with certain vaccinations, so as to prevent Reye's Syndrome. I don't use the shampooo anymore, as I use Tea Tree Oil shampoo on both of my girls now. If it is working for you, that is great. I didn't find that it made a huge difference. It could have been the brand that I was using. Even the Tea Tree Oil shampoo, though, is not working as well anymore. I think the advice about the olive oil left on overnight is definitely worth a try! Take care!

Angel
Posted by: adnickel

Re: CIE infant - best scalp treatment? - 08/25/03 09:00 PM

Sirena, the shampoo is called Dermarest and I got it at the grocery store. It says it is for psoriasis. Her little head looks almost normal for the first time since she was born. Let's hope it keeps up.

It's hotter than Hades in Texas right now and I think the high use of A/C is making her condition worse. Any thoughts about this? It seems like her skin was better when I could get her outside in the humidity (which we have plenty of here in Texas).
Posted by: Sirena

Re: CIE infant - best scalp treatment? - 08/26/03 05:23 AM

AC is very drying. drinkikng lots of water, a humidfier inside might help. I have to use one here in Alaska when it gets really dry, of course not usually due to air conditioning. You could try turning down the AC and supplementing with a Misti-mate. It is not dry here today though, went to the state fair and it poored rain all day. My kids and I were drenched by the end of the day, cold too. Can't complain though, we had a really nice summer. I start back to work tomorrow after having the summer off. I am always excited tomeet my new class but and sad to see the summer end. Ours weather wise is so short. What is your little girls name? I have a 14 and 10 year old both great kids. Take care and have a nice day.

------------------
Michele Menzia
Posted by: Chandra

Re: CIE infant - best scalp treatment? - 08/29/03 05:39 PM

Three things:

AC: yes, it can dry you out just as bad as electric heaters in winter. Having a decorative table top water fountain in every room helps put moisture back in the air and for some reason it doesn't cause mildew/mold probelms like a humidifier can. Even a fish tank is a good idea, and of course, the humidifier.

Using scalp treatments overnight: Keith Charsha mentioned that he got a nasty scalp infection after keeping a shower cap with scalp treatment on overnight. I mentioned this to my derm, and she agreed that it isn't wise to do the treatment overnight due to infection risks. HOWEVER, as long as you do use the scalp treatment for two hours or so, with a shower cap or something to keep the moisture in, and then when done you wash your scalp/hair thoroughly, you shouldn't be at risk for an infection.

Vaccinations: keep the derm and the pediatrician informed of everything your daughter uses for her skin, and chat with both about any adverse reactions that might occur with those products before getting any vaccines. Sometimes the docs forget if we don't remind them, after all, they have an awful lot to remember for us as it is.
Posted by: libby

Re: CIE infant - best scalp treatment? - 02/15/07 04:00 PM

I need help for my daughter who is 11 1/2. Her scalp is beyond bad right now. She has very long hair, and I really don't know what to do for her. T-sal (sp?)and Feeling Flaky by Burts Bee's aren't really doing anything for her at the moment.

There is a rumor going around in Claire's school that she has lice. She, of course, does not have it, but because of the flaking, kids think that she does. I even got a call from a parent saying that her daughter noticed something crawling around on my daughters head. Claire is completely mortified and quite hurt actually that this girl didn't come directly to her and discuss it right then and there.

Thanks in advance for your suggestions.

Libby
Posted by: sideshowbob

Re: CIE infant - best scalp treatment? - 02/15/07 07:15 PM

I would ABSOLUTELY tell your daughter's teacher and the principal about this rumor, and have it squashed immediately. Kids can be so nasty, and your daughter has enough on her plate without that.

As for the scalp, we use Sebulex dandruff shampoo for her really bad scalp days. It is a strong salicylic acid and sulfur shampoo, but it STINKS. I would use it on Friday night when she doesn't have to go anywhere for a couple of days. Seriously, it smells that bad. We put it on our daughter's head and let it sit for at least five minutes -- for really bad scaling, you might need to let it soak longer. It is so strong it burned my daughter's neck, so I always put a layer of Aquaphor on the back and sides of her neck before she gets in the bath. Follow the shampoo with Curel lotion in the hair and comb with a fine tooth/lice comb to remove scales.

I've also heard of African-American women pouring olive oil in their hair, wrapping their heads in a turban, and sleeping in it overnight. You then wash out the oil for the daytime so your hair isn't greasy. Don't know if that one works, but if you try it let me know!
Posted by: libby

Re: CIE infant - best scalp treatment? - 02/15/07 10:47 PM

Hi Sideshow,

I was just @ CVS and they don't have Sebulex. Where else might I find it?

I probably should have gone to the higher ups, but that would probably just put more attention on Claire, which she does not need or want.

Thanks,

Libby
Posted by: sideshowbob

Re: CIE infant - best scalp treatment? - 02/16/07 01:54 AM

Riteaid has it: http://www.riteaid.com/sitesearch/index.jsf

I actually had it ordered for me at Walgreens the first time I used it.

You know what? Riteaid is the only place I can find that carries the Aquaphor baby wash, too. Seems they are the most icthyosis friendly store in my town! Weird.

I hope things get better for y'all; that is such a crappy thing to have happen to her.
Posted by: libby

Re: CIE infant - best scalp treatment? - 02/16/07 04:18 PM

The next time I am out and about I will check out other drug stores.

Thanks,
Lib
Posted by: aylasmom

Re: CIE infant - best scalp treatment? - 02/17/07 08:31 PM

My daughter is 9 months old with CIE (we think...) We have really liked the olive oil- I put it on and leave it a while, and the scales seem very easy to remove after- Preventing them is another story- Haven't really found anything that works that great- Dawnn