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#20248 - 04/07/04 11:10 PM son with ichthyosis, concerned re 'normal' treatment
Ursula Offline
Member

Registered: 04/07/04
Posts: 6
Loc: Northern Ireland
Hello there,

I have been on this site many times over the past year and have only now registered. My 2 and 1/2 year old has ich -derm thinks it is x but not sure. no-one else in family has had this that I know of though I found out recently that a distant cousin had a skin disorder that was cured by drinking goat's milk(so could be link there)- which brings me to the reason for needing some good advice from those of you on this site. I'm in N. Ireland but Finn's treatment involves morning routine of a hydrating gel cream called double bass that has no urea or steroids or anything and a nightly treatment of yellow soft parrafin after his bath. Finn's skin is thankfully not severe compared to some I have seen but recently his arms are the worst and getting itchy. Today I had him at his dermatologist who he sees once to twice a year and who every time except the last one has been different. Anyway, I have a leaning towards trying more natural remedies as I am not happy to overload my son's skin in chemicals some of which (considering how much he is in contact with them) may even have carcinogenic links- parrafin). He has been taking a spponful of cod liver oil every day for about 6 months and the improvement has been great plus his spoonful of vitamins. He's a fantastic wee boy to drink the stuff because its horrible, but too young to take a capsule. On discussing his treatment with the derms 'trainee' doctor who we saw first after coming 120 mile, he did not actually look at Finn much. Then the dr we had the appt with was consulted for a few mins. Not wanting to seem like an ignorant mother (although I'm sure I appear to be) over here you're told whats wrong and how it will be fixed and that's it no question. I ventured to ask if any specific oils would be useful (as I have been massaging him with a very mild blend of almond oil with vit E, neem , camomile and lavender) to which I got the question " GTX or CASTRAL?" (oils for the smooth running of your motor in UK). I cannot believe that this is a correct way to treat a parent of a kid with such a skin ailment. Also derm wanted him to go on calmurid HC which having read about on this site previously was not happy with as mod steroid and skin thinning- also prefer natural treatment. I am griping I know but I'm the one who looks into these things in house. So to get back to point, Buffalo milk, I am hearing great things about this and wonder have any of you tried it? Rave reviews re eczema so I am assuming it would help ich also in some way? Also, aromatherapy oils - are the perfumed oils even though not synthetic irritating in small blended amounts? Is there any natural product that would help itch? I'm sorry - it seems cheeky to ask all these questions and me only new but I need to talk to those who know and not those who think they do. By the way I am not as cross as this usually!! Hope to hear from somebody and this site is a fantastic place for all those connected with ich as well.

seeya, Urs xo

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#20249 - 04/15/04 09:45 PM Re: son with ichthyosis, concerned re 'normal' treatment
Annamarie Offline
Member

Registered: 07/22/03
Posts: 64
Loc: La Mesa, CA.
Hi Ursula,
Welcome. I really don't have much to add to your post, because my son has a more servere form of ichthyosis. But as far as dermatologists go, I know what you mean. Right now I have a great one for my son, but initially had one that didn't take my concerns seriously. When I repeatedly told him about pustules my son got on the soles of his feet,(as many as ten or more sometimes daily) he said he found that hard to believe. Just be persistent about treatments for your son. You have every right to get frustrated with the daily issues that arise taking care of your son.

Buffalo milk? Where do you get it? Have you ever tried the salt baths? My son also does them, but not without me reminding him of it while he's already soaking in the tub.

I happened to be leaving Dublin with my boyfriend (actually already in an airplane for 3 hours)when the September 11,2001 attacks happened to the United States. We were turned back to the airport and stayed in Dublin for another five days before we could get home. Everyone there was wonderful to us. Very helpful and just incredulous that this had happened. Because I had a son with severe Ichthyosis at home I was especially distraught over everything. A supervisor at Aer Lingus, Mary Pepper, made sure I finially got on a plane, walked with me through customs, bought me a drink, and settled me into the waiting area to get on a flight. I will never forget her kindness.

Eventually I would love to get back and visit your beautiful country.

Annamarie

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#20250 - 04/17/04 04:12 AM Re: son with ichthyosis, concerned re 'normal' treatment
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Ursala
Thank you for your post and happy you found us.I would agree with Annamarie about some of the derm doctors shuffling us off as if our questions didn`t matter.If your doctor wants to determine if your son has x-linked ichthyosis, tell him to take a sample of blood and analyze it.If it is X linked, your son`s results will show a huge amount of cholesterol sulphate.Normal readings are 80-300 ug/ml. An X-linked reading will show 2000-9000 ug/ml.My sample was taken at the 2000 Philadelphia conference for the National Ichthyosis Registry and showed a reading of 5276.It is as simple as that.
As for your other questions,I would contact the Ichthyosis Support Group in the U.K or our foundation, FIRST.The ISGs website is isg@ichthyosis.org.uk.Our foundation website is www.scalyskin.org or info@scalyskin.org.I also have an itching problem, and the Lachydrin seems to take care of it just fine.Since your son is so young,I dont blame you for not wanting to use the acid creams.Also Ursula, check with Maureen Tierney, program director of our ich support network to contact other mothers.I hope this helps and if you would like to email me, my address is lesthan@aol.com. Take care and by for now.
Sincerely,
Les Avakian
_________________________
Les Avakian

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#20251 - 04/17/04 09:33 PM Re: son with ichthyosis, concerned re 'normal' treatment
Ursula Offline
Member

Registered: 04/07/04
Posts: 6
Loc: Northern Ireland
Hi Anna Marie, thanks for giving me some advice, sometimes its hard to know what to do for the best as this is a learning process for us all - i want to try know as all mums do how best to deal with the ichthyosis. The bath salts you were talking about, I actually use coarse sea salt mixed with some of his aveeno oil as a type of scrub or exfoliator, (only once a week and very softly), but his skin is amazingly soft when he gets out of the bath, and while he's in it the sea salt is melting in the water and hopefully helping his skin. I haven't a clue about cholesterol sulphate so I am going to as lesthan about it.

You must have been scared out of your wits to be stuck in another country when the horror of 9/11 happened. I can't imagine what must have been going through your mind. I didn't believe it when I saw it first.

I hope you do get a chance to get back here for a holiday, we love visitors and have many links with your country as I'm sure you know! Up North here where I am it's very hospitable and not half as bad as you may think!

How old is your boy? I'm actually thinking about going into nutrition and all sorts of things to try and help alleviate his condition. Anyway, thanks for the reply and good luck with everything> (Oh, Buffalo milk was only available in England and was costing an absolute fortune to get it sent over so I'm trying goats' milk at the moment which is reported to be much better for those with skin disorders than cows' milk for reasons to do with the breakdown and types of fat they contain in the human body). Hope to talk again soon,

Bye
Ursula xo

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#20252 - 04/20/04 08:15 PM Re: son with ichthyosis, concerned re 'normal' treatment
Annamarie Offline
Member

Registered: 07/22/03
Posts: 64
Loc: La Mesa, CA.
Hi Ursula,
My son Ryan just turned 18 in March. Like you I'm always trying new things on his skin. I just bought some Aveeno bath scrub with oatmeal, and he didn't even want to try it. In his bathroom I keep a huge glass container filled with sea salt and another one with ground oatmeal and powered milk, both for the tub when he soaks. Unfortunately he never does it unless I prompt him to.

You are doing great, keep on doing what you are doing and just be open to trying new things.

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#20253 - 02/26/05 11:47 PM Re: son with ichthyosis, concerned re 'normal' treatment
gail Offline
Member

Registered: 02/12/05
Posts: 18
Loc: england
Hi. Both of my boys used to have lachydrin a few years ago, but as I live in England and its so hard to get doctors stoped it and I just use double base gel now but its not much good.
My 7 year old is always ichy and keeps taking off his teashirts.
gail

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#24199 - 04/16/09 09:28 PM Re: son with ichthyosis, concerned re 'normal' treatment [Re: Annamarie]
rdavid Offline
New member

Registered: 04/16/09
Posts: 2
Loc: Chicago
Hi, Annamarie.
I just watched a video of you, Ryan and your doctors. I am a neonatologist caring for a 4-month old with harlequin ichthyosis who is about to go home from the hospital. (I have lots of help from dermatologists -- skin conditions are not my specialty.) His parents speak only Spanish, so I end up doing lots of translating for them, but I am really at a loss what to tell them much of the time. Do you know any Spanish speaking families who have dealt with this condition and might be available to talk with the parents of my little patient Jose?
Richard David
Chicago

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#24204 - 04/17/09 03:18 AM Re: son with ichthyosis, concerned re 'normal' treatment [Re: Ursula]
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Welcome RDAVID
Thank you for posting. If you have the time, you can also contact Jean Pickford or Moureen Wenik at our ichthyosis foundaton FIRST at: info@scalyskin.org or you can call (215)619-0670. Our website is:www.scalyskin.org. I havent spoken to Annamarie or Ryan in awhile and I hope they will see your post. Take care RDavid and by for now.
Sincerely,
Les
_________________________
Les Avakian

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#24211 - 04/17/09 07:41 PM Re: son with ichthyosis, concerned re 'normal' treatment [Re: Les Avakian]
rdavid Offline
New member

Registered: 04/16/09
Posts: 2
Loc: Chicago
Thanks. I'll send try contacting them.
R.D.

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#26280 - 04/25/10 01:52 AM Re: son with ichthyosis, concerned re 'normal' treatment [Re: rdavid]
ams Offline
Member

Registered: 04/24/10
Posts: 7
hi ursula
i am affected with iv but by gods grace my three year old son is safe till now.even he showed somE symptoms on one of his legs at the earlier stages.wht we did is we used to apply milk cream on his body half an hr before bath.i can refer to my recent posts in alternative therapies as "milk cream very effective".
Then i used to apply sebamed body milk after the bath.i use serbamed soap only for him.these sebamed products are really good for children.i dont know whether it will work for every one.but my son had very mild scaly skin condition.it will work good if u start using it earlier.u can try out heavy creams of cousre that will work for ur child.even u prefer a natural remedy right??

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