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#10473 - 05/24/05 06:32 PM topical steroids
Laurensmom Offline
Member

Registered: 12/29/04
Posts: 212
Loc: north billerica, massachusetts...
Hi everyone,

My dauhter Lauren in 13 months old and has Harlequin Ichthyosis. Most recently her derm recommended we use a mild topical steroid Tridesilon (Desonide is the generic name) on her torso, arms and legs for treatment of her redness and to help with itch. This is to be used over the acquaphor which we apply otherwise. Our pharmacist seemed surprised that we were to use it on a regular basis (2-3x/day) and over such a large area. I am having a hard time finding any information on the use of steriods with this age group and diagnosis. What are your experiences? Should we be concerned about its use? I look forward to hearing from you. Thanks in advance.

Shannon

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#10474 - 05/24/05 07:30 PM Re: topical steroids
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
Hi Shannon,
My name is Lisa. I have three kids, two of which have Lamellar Ichthyosis (ages 3 and 1 year). We tried the desonide lotion with my son when he was a baby. It really didn't seem to help him so we stopped using it. It didnt seem to bother him but it didnt do anything for him either. I dont remember how often we were to use it but I do remember being told not to put it on any skin that looked somewhat normal and to only use it when he was especially red. I also think that we were told to only use it for a short period of time. I supose everyone is different but from what I was told, it was virtually harmless to use on him as directed by our dermatologist. I also had the same concerns about it and I was told that it was no big deal and it was very mild. You could always double check with your daughters derm. and mention the comments from your pharm.
My daughter is also 13 months old (born April 28, 2004) but we have yet to try any prescription ointments on her.
The only other prescription we used on our son was Elidel and it didn't seem to help him much either and it burned his eyes if we used it above his shoulders so we stopped using it as well.
Best of Luck!
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#10475 - 05/24/05 09:14 PM Re: topical steroids
Laurensmom Offline
Member

Registered: 12/29/04
Posts: 212
Loc: north billerica, massachusetts...
Lisa,
Thanks for responding so quickly. We, too, were told by the derm and the pharmacist that Desonide was mild and only slightly stronger than the over the counter hydrocortisone lotions. She does not seem bothered by it, but to date I see no difference in her skin's appearance or in her itching. Have you ever used lactic acid on your little ones? We have been offered in the past something less than 5% compounded in an otherwise benign lotion and have not yet tried it. It may be our next step and Id love a parent's opinion. Thanks again for reaching out. It is always appreciated.

Shannon

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#10476 - 05/24/05 09:25 PM Re: topical steroids
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Laurensmom
Welcome to our group and happy you found us. The most educated harlequin moms I know are Annamarie Gonzalez and Patty Steinitz. Annamarie is the mother of Ryan Gonzalez and she has posted many times here on the bulletin board.Patty is the mother of Hunter Steinitz. Contact Jean Pickford or Maureen Tierney for information on contacting Patty at info@scalyskin.org or (215)631-1411.I hope this helps Laurensmom and good luck to you.
Sincerely,
Les Avakian
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Les Avakian

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#10477 - 05/24/05 09:53 PM Re: topical steroids
Laurensmom Offline
Member

Registered: 12/29/04
Posts: 212
Loc: north billerica, massachusetts...
Les,
Thank you for your welcome. I have found the group very helpful, from both a practical and emotional stand point. I have actually corresponded with Patty via email and have had a recent opportunity to talk with her on the phone. The entrie community has been very supportive and I look forward to continuing our relationships.

Thanks again,
Shannon (Laurensmom)

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#10478 - 05/25/05 12:54 AM Re: topical steroids
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
Quote:
Originally posted by Laurensmom:
Lisa,
Thanks for responding so quickly. We, too, were told by the derm and the pharmacist that Desonide was mild and only slightly stronger than the over the counter hydrocortisone lotions. She does not seem bothered by it, but to date I see no difference in her skin's appearance or in her itching. Have you ever used lactic acid on your little ones? We have been offered in the past something less than 5% compounded in an otherwise benign lotion and have not yet tried it. It may be our next step and Id love a parent's opinion. Thanks again for reaching out. It is always appreciated.

Shannon


Shannon,
When my son was born, I remember our dermatologist spoke to us about one day using Lactic acid when my son was bigger but he has not mentioned it again. I dont know if he hasn't mentioned it again because its not necessary or because my son is not big enough in his opinion yet. We actually just went to the dermatologist yesterday and there was no mention of changing our routine or trying anything new. The kids both look pretty good and I work so hard to make sure they are always moist and comfortable. Our discussion yesterday with the dermatologist was mainly about overheating in the summer because our son gets pretty red pretty fast in anything above 80 degrees or so. Other than that it was the usual, "They look wonderful...your doing a great job." [img]http://www.ichthyosis.com/ubb/wink.gif[/img]

In regard to you speaking with Patti...if you could either pass this post on to her or email me with her email contact that would be wonderful. I have been thinking about trying to contact her lately. When my son was born, they mentioned in the NICU that the last baby born with the membrane was born about 8 years before my son and that the baby's name was Hunter. The nurses told me all about Patti and Hunter and said that they were sure she wouldn't mind me contacting her but I guess I felt a little funny calling somebody out of the blue that didnt know me so I didn't put much thought into it. When my daughter was born last April, one of my nurses actually knew Patti and Hunter and she said that her daughter was friends with Hunter but that they had moved from Pittsburgh to Florida. My husband just recently changed jobs and when he was talking to on of the guys in the office, they were talking about our kids and there was mention of our younger two having Ichthyosis. A few days later, the guy came back to my husband and asked again what the name of their skin condition was and said that he knew a little girl named Hunter who used to go to their church that had Ichthyosis. Small world I suppose LOL. Everyone who knows or knew Patti and Hunter says about how nice they are and now I am wishing I would have contacted her when my son was born 3 years ago. I came across these boards when my son was younger but never posted or read much until now. I recently came across them again and saw a post that I could contribute to so I posted and I am finding that I am enjoying these boards and talking to other moms who do the same thing I do all day.
Lisa
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#10479 - 05/26/05 02:58 PM Re: topical steroids
RobbysMom Offline
Member

Registered: 10/14/04
Posts: 26
Loc: Michigan
My son has a very different form of ich, we've been using steriodal medications on since he was about 5. If you do use them and they work, make sure you read application directions (thin layer better than thick, wash your own hands or you are medicating yourself, etc.)

I had another derm who made an interesting recommendation -- when trying new lotions, creams etc... you can test effectiveness by applying only to one area. We have a tough time telling if a change in lotions was making a difference or if it was changes in the weather or something else. I wouldn't do this w/o discussing it with your own derm first. I think steroids may be one medication you do NOT want to do this with.

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