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#16158 - 09/24/06 02:10 PM hair loss
debbie upton Offline
Junior Member

Registered: 09/24/06
Posts: 2
Loc: hertford, englandunied kingdo...
hi! i have just come across the board and have spent the morning glued to all of the information. My son is now 13 and copes with his lamella ichthyosis brilliantly. Yesterday was the first time he had an experience of abuse from other youths in the park - but he is philosophical about it while i am pierced to the heart to think of him experiencing the prejudices of others.
Anyway, what worries me is that he seems to be his losing hair. it is becoming thin especially at the crown. we do wash it with an anti-fungal shampoo and try to remove scales but he is at an age where i can not scrub him anymore, he is desperate for the independence to take care of himself. He has scales on his head which are thick and a bit smelly. when the scales are combed off after softening, handfuls of hair come out. I am hoping it will grow back, but i think it is thinning as he moves through his teenage years. My husband's uncle had LI and he was bald before he was twenty.
Any ideas? Also, would like to know more about salt baths. What kind of salt and how much??

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#16159 - 09/24/06 11:09 PM Re: hair loss
Chrissie Offline
Member

Registered: 07/20/06
Posts: 122
Loc: The Gap, Brisbane, Qld Austral...
Hi Debbie

Great to see you on board here. I don't have ichthyosis or confess to have the answers for hair loss or the specific treatment with salts. My granddaughter has a form of ichthyosis, so that is one reason I am on here. The support here is tremendous. I feel sure others will be in contact with you.
I have a feeling Kotick(Jeff) may contact you, we both live in Brisbane,Australia.

May I suggest you contact an "absolute wonder" you have in the UK. I am a psychiatric nurse with adolescents and had the great fortune this year to do workshops with SIMON BLAKE from the UK. I can't speak highly enough about him and his devotion to the "rights of passage for boys to adulthood". He has great material on bullying amongst many other subjects and it is so refreshing to hear him speak with passion on boys. Thankfully he has taken great steps to crush the myth of the stiff upper lip that was imposed on men and boys.

As a teacher and mother Debbie, I think you will find his material of great use and maybe you can get him to come to your school. I think your son will benefit greatly too, from dealing with Simon.

I will give you a website for info on him http://www.ncb.org.uk/Page.asp?originx3059wa_9297010810013d91j8207454025

If this doesn't work "google" Simon Blake and you will find him.

Not sure if this helps but it is a fashion craze here for young men to have very short hair, they call it a No.1 cut. Our climate allows for that too. Maybe that will be ok for your son.

We all feel the pain for our children, I call it the "badge of motherhood". I do hope this helps.
My email address is glesga28@hotmail.com if feel I can help in anyway.

Warm regards
Chris born in Glasgow hence the email address. [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

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#16160 - 09/25/06 01:59 AM Re: hair loss
Kotick Offline
Member

Registered: 01/29/06
Posts: 205
Loc: Brisbane, Australia
G'day there!!

First of all, welcome to the Board, I hope you find it very useful.

I am 29 and have lamellar ichthyosis and I have had issues with my hair for many years. I still have a reasonable amount of hair, but have a few bald patches. I find that if I wash my hear then attack it with a fine tooth comb and a pair of tweezers (to poke through the thicker skin and help lift it up) I can keep my head relatively scale free. I don't go overboard and mostly do it to prevent the thicker skin causing the skin under it to rot. The fine tooth comb helps me to lift the skin and allow the hair to pass through it as I remove it. Takes a lil longer, but at least the hair stays on.

As for dealing with the lack of hair, I just treat it like my skin and don't let it bother me. I just make it look as presentable as I can and most people don't really make an issue of it.

Good luck with it all

Jeff

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#16161 - 09/25/06 03:40 AM Re: hair loss
shandra Offline
Dakota's mom Lamellar
Member

Registered: 10/07/05
Posts: 349
Loc: Cape Coral, FL
Hi Debbie and welcome

I am no expert at any of this. My son has Lamellar and he just turned one. I can tell you about the salt tho. We soak him in sea salt. It really works with him. When he was a few months old he had a real bad smelly head and thanks to the advice of people here, we stopped putting aquaphor on his head. Since then we have never had a problem with the smell on his head. He does have scales, and when he was born he had a full head of hair and then it all peeled off, but it has grown back in. Another suggestion for the smell on his head is to have him take baths in bleach and put it on his head also, it will kill all the bacteria.
Good Luck

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#16162 - 09/25/06 09:52 PM Re: hair loss
wva Offline
Member

Registered: 08/08/05
Posts: 401
Loc: Detroit, MI, USA
Hi Debbie,
I'm a 40 year old mother with LI. My scalp and my feet drives me nuts. I have heard of a few people on here using a little bleach in their bathwater and I just compare it to going in a swimming pool. You probably wouldn't use much in a bathtub though. I don't use bleach myself. I like to soak my scalp in my moisturizers overnight and wash it out the next day. It is a good idea to shower off and scrub the dry skin as much as possible then, run fresh water for a bath and add some sea salt to it. If you can't find sea salt maybe even some non-iodized salts. I like to add a good amount of salt (maybe 6 or 8 cups) and use about 1/3 cup of Skin So Soft bath oil on my body avoiding getting it in my hair because it makes it look greasy. Right when I get out of the bath I comb my scalp to get any loose scales out that I can. For me the hard part is stopping myself from combing it to the point of being painfully sore and even bleeding. With ich it is normal to have some flakes and dryness on the scalp. My scalp doesn't smell bad perhaps because I do keep it from getting too thick. As for the thinning hair I don't know what to suggest. When I was really young my mom used to curl my hair to try to hide the scalp because of how rude people would get. Maybe when he is older he could shave his hair off and have an easier time taking care of his scalp. But, that is much easier said than done. Hopefully it will grow back for him. I do have a decent head of hair (even though it is blonde, thin, and flat!). Good luck and God bless! [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

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#16163 - 09/26/06 12:24 AM Re: hair loss
threerxli Offline
Member

Registered: 01/14/03
Posts: 515
Loc: virginia
I wanted to say, that I am so happy you have found this website and board. I know from experience that it helps to talk (type) to someone that understands how you feel and what you may be going through. when I read your post, so many emotions came over me..and as a mom I cried when I read it. I have three boys with x linked ichthyosis, it is different than lamellar. With XLI, the skin adheres. When we descale the scalp, sometimes their hair comes off, but it also leaves a clean scalp for hair to grow in. For my boys, if I do not remove the scale, it keeps the hair from growing in completely. Funny as it sounds, sometimes if the scalp is especially thick, and I havent helped remove the scale, it seems to grow in the direction that the scale pushes it. With XLI, we do not have to remove the scale on the scalp more than two or three times a year. (for us, we live in a mild climate, the skin looks great most of the year) What we find works best for us is to place oil on the scalp, and then descale with a fine tooth comb. We usually place baby oil on the scalp after a warm shower or bath. (when they are sweaty) Then carefully lift the scales up and remove it from the hair. It doesnt bleed we only take the thick layers when they have practically started falling off on their own to begin with. My oldest son, which is almost 13, is into that "long hair" look. (much to my husbands and my dismay) It is much harder to get all of that extra skin out of his hair. SOOOOO, we descale (I wipe the extra skin on a towel as I go), then after, I use neutragena t-gel. This seems to keep his head from scaling longer, and head and shoulders to maintain (or any anti dandruff type shampoo, they have great scents now) To keep their hair from looking greasy, I wash their hair with dishsoap(we use palmolive) and only wash the hair, not the scalp-it really does strip the grease from their hair and make it fluffy and soft the next day. For their skin, my boys came up with this on their own- they hate to manage their skin it takes too long they say and they dont care. (boys !!!)
So, we use epsom salt because it is cheap, and easy to find. It is magnesium sulfate, there may be products similar to this, but this works for us. When they shower and their skin is scaly, they lather up with dove moisturizing cream, (non soap soap), then grab the epsom salt by the handfuls and use it as a scrub on the thickend areas. While still in the shower, they put lotion on after the salt(out of the water spray) and then they rub it in. This makes the skin ball up and roll off. They rinse and re soap themselves with the dove. This is down to 15 minutes for them-faster than I shower. When they get out they use lotion on their bodies, usually whatever is available, they dont care-I place Jergens extra moisture or vaseline intensive care out for them-they could careless. When they were younger we used Aquaphor and it works great, but they hate how thick it feels, and if they wont use it, its not worth having around. I have to say, this is not a daily process for them, only a bad skin day routine. (winter) Otherwise they only need dove and a shower (lotion follow up).
We started using the salt method when we spent a summer at the ocean (the Atlantic) about five years ago. At first their skin looked horrible, but then we realized that all the extra skin was falling off, and they looked great. We have used the salt water ever since. Sometimes adding it to their baths (if you can still get them to take a bath at this age) We add glycerin and oils to the water too, but follow up with the dish soap to remove the extra oils in the hair. I have no idea if this will help or not. My boys have XLI, not Lamellar. Welcome to the board!

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#16164 - 11/18/06 01:04 AM Re: hair loss
nancywilson Offline
Junior Member

Registered: 11/17/06
Posts: 2
Loc: New Albany, Indiana, USA
I would really like to discuss the bleach in bath technique you are using on your child. I am 29 with Lamellar Ichthyosis so I guess you could say I am an expert at this. I would very much like to say I think it is possibly harming your son and with him only being a year old, I would like to give you some info. nancycwilson17@yahoo.com

Quote:
Originally posted by shandra:
Hi Debbie and welcome

I am no expert at any of this. My son has Lamellar and he just turned one. I can tell you about the salt tho. We soak him in sea salt. It really works with him. When he was a few months old he had a real bad smelly head and thanks to the advice of people here, we stopped putting aquaphor on his head. Since then we have never had a problem with the smell on his head. He does have scales, and when he was born he had a full head of hair and then it all peeled off, but it has grown back in. Another suggestion for the smell on his head is to have him take baths in bleach and put it on his head also, it will kill all the bacteria.
Good Luck
_________________________
Nancy C. Wilson

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#16165 - 11/18/06 01:38 AM Re: hair loss
josiah26 Offline
Junior Member

Registered: 11/17/06
Posts: 2
Loc: New Albany, Indiana USA
My Name is Josiah. I am a 26 year old male with the same disorder as your Son. I was just wondering what type of medicine he is taking to help with the disorder. I Would be more than happy to help in any way I possible can. I know how how I felt when I was his age. I wish that I had know then what I know now. For example, Taking accutane has made such a difference for me that I Have begun to perspire which opens a whole new world up. I also find that drinking a lot of water and taking vitamins helps out a lot more than one would think.

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Josiah P. Wilson
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Josiah P. Wilson

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