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#15181 - 07/18/01 03:41 AM how young is too young?
olivia Offline
Junior Member

Registered: 07/17/01
Posts: 3
Loc: miami, fl-usa
I have a daughter with bcie, she's 3 years old...her doctor has suggested the possibility of using retinoids to treat her skin...my husband and i have been doing some research on the subject but we have yet to here from anyone who is using these drugs on someone so young...some of the testimonials i have read here are very promising while others are discouraging...our doctor tells us that none of his patients on these retinoids have had any side effects...we want only what is best for our daughter...if there is anyone who can tell us more about starting at such a young age,please feel free...we are listening to everyone's opinion.
thanks,
olivia

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#15182 - 07/18/01 12:32 PM Re: how young is too young?
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
Olivia,

My best suggestion is for you and/or your doctor to contact FIRST (the Foundation for Ichthyosis and Related Skin Types). You can reach them at 215-631-1411 or on the web at www.scalyskin.org Talk to them about putting your doctor in touch with someone on FIRST's Medical Advisory Board. FIRST's MAB members are all derms who are experienced with ichthyosis and most are experienced with using retinoids for treating ichthyosis. One of them can give you and your doctor some more insights.

This is a very personal decision. Only you and your family can make the "right" decision for you (so try not be unduly swayed by people who either say "yes, do it now!" or "omigod, what are you thinking, of course not!" and I think you'll hear both). I think what you're doing (trying to gather as much info as you can) and then making a decision, is a good approach.

I personally took Accutane for about 14 years, starting when I was 13. I personally have mostly good things to say about my Accutane experience (and happy to tell you more than you want to know about my experiences! [img]http://www.ichthyosis.com/ubb/wink.gif[/img] ).

What I've generally heard people say (like at FIRST's national conferences--the next one is in Seattle in 2002) about age to start retinoids with a child is that they try to wait a little longer than 3 years. The things that you're most concerned about are bone changes. The most serious side effect that's seen with some frequency with people who take high doses of retinoids for long periods of time is bone changes (most likely: calcium deposits, bone spurs, on joints). There's some thinking that since a small child's bones are still growing so fast, you should be extra cautious about introducing retinoids at an early age.

Also, a small child may not be prepared to deal adequately with other side effects (in terms of being able to recognize them, communicate them, or care for themselves to deal with them).

I might ask your doctor some follow-up questions about his experience with retinoids.
  • Why were his patients on retinoids--for ichthyosis or for other things (like acne)? People who take retinoids for severe acne typically take *much* lower daily doses than someone who is looking to improve their ichthyosis. Also, people with acne only take retinoids for a limited period of time (I think 2-3 months is common). People with ichthyosis take retinoids potentially indefinitely. It's a very different management program, managing the retinoid treatment of someone with ichthyosis vs. someone with acne or some other issue.
  • When he says that none of his patients have had anyside effects (that's a very strong statement), this makes me wonder if he's either 1) not really used retinoids very much in his practice, or only used them for treating acne or 2) is only referring to the more severe side effects, like bone changes.

    I don't know anyone who has taken retinoids for ichthyosis who hasn't had some side effects. For me, they were mostly limited to "annoyance" type issues: very dry lips (needing chapstick all the time), peeling of the skin from underneath my finger nails, and nose bleeds. Lots of nose bleeds. Mostly they were very short and easily controlled, but I did end up in the emergency room one night in college after my nose had been bleeding from both nostrils heavily for about 3 hours. Not to be gross, but most of them happened totally spontaneously--I wasn't picking nose, my nose hadn't been hit by anything, etc. Nosebleeds would just start, anytime, anywhere. At age 13 and up, I considered this an annoyance--a small child might find this much more traumatic.
  • How exactly does your doctor propose managing your daughter's treatment? How often will she have blood work done (to monitor triglyceride levels, which tend to elevate with retinoid use)? How often will she have x-rays to monitor whether she's experiencing any bone changes? How much of her body will be x-rayed (and I'm not implying that more is necessarily better--have to balance the risk of bone changes with the risks of x-rays).

    I started with blood work every 8 weeks, and x-rays every six months. After getting a "comfort" level that I wasn't experiencing any changes (over 2 or 3 years' time), that backed down to blood work at the beginning, and near the end, of a treatment cycle (do a search on this forum on "drug holiday"--that's another issue altogether when managing retinoid use for ichthyosis. There's some thinking that if you take breaks, "drug holidays", you reduce your risk of serious side effects...rather than taking a retinoid continuously, without ever stopping).

    Also, keep copies of your x-rays (pay to have your own personal copies). Then take them with you when your daughter has new x-rays taken. It's very important for the technician reading the films to be able to compare with previous x-rays. The first signs of bone changes resulting from retinoid use can be very subtle (re: possibly dismissed as normal, or something else). If you go to the same hospital for the x-rays every time, they should theoretically have them on file. But why take a chance? Keep your own file and take your personal file with you for them to use.


Hoi. That's what comes to mind right away (I know that was kind of stream-of-consciousness. Sorry for being so disorganized).

I hope some of the other mom's will respond here. I've heard several moms say that they're waiting until social pressures really seem to make retinoid use more necessary (also at an age when the child can understand more the risks and rewards, and actually ask to be put on retinoids). Seems like 10-13 years old is the range I hear a few people shooting for.

But there are definitely people out there who have started their children on retinoids very young (at least as young as 3) and as far as I know, have been very happy with their decision.

I hope some of those parents will see this and take the time to respond with their thoughts.

Very best of luck in your decision.

Laura


[This message has been edited by Laura Phillips (edited July 18, 2001).]

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#15183 - 07/18/01 09:13 PM Re: how young is too young?
olivia Offline
Junior Member

Registered: 07/17/01
Posts: 3
Loc: miami, fl-usa
LAURA, THANK YOU SO MUCH FOR YOUR RESPONSE...MY HUSBAND AND I ARE NOT 100% CONVINCED ABOUT THIS WHOLE RETINOID THING ESPECIALLY ON SUCH A YOUNG CHILD...WE ARE HOPING TO FIND OTHER METHODS WHICH WE CAN CONTROL HER ICHTHYOSIS...SPEAKING OF WHICH...YESTERDAY I READ ABOUT A DOCTOR IN ECUADOR WHO IS DOING SOME KIND OF THERAPY WITH THE INMUNE SYSTEM AND ICHTHYOSIS PATIENTS...I HAVE TRIED TO REACH HIM BUT HAVE BEEN UNSUCCESSFULL...DO YOU KNOW ANYTHING ABOUT THIS? IF YOU DO PLEASE LET ME KNOW I AM VERY INTERESTED IN LEARNING MORE.

THANK YOU,
OLIVIA

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#15184 - 07/18/01 11:27 PM Re: how young is too young?
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
Olivia,

I think the same doctor of whom you speak may have emailed me at one point, saying he thought he had a cure for ichthyosis and did I want to know more. Well, of course I was both interested and highly skeptical. I checked out his website, but it didn't have much info about his treatment of ichthyosis (and my spanish was rusty enough that I didn't understand all of it either). I asked him to email me with more information in English, and I never heard back from him.

If you're able to find out more about him or his work, please let us all know. Would be interesting.

L

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#15185 - 07/19/01 05:50 AM Re: how young is too young?
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Laura and Olivia,Dr. Angel Ramirez was first brought to my attention after chatting with Paula from Santiago Chile. She has lamellar icthyosis and gave me the sites of his studies. The site is www.inmunomodulacion.cjb.net.It was written in Spanish, and my high school Espanol is a little rusty. I wrote to Dr. Ramirez at ramirez@telconet.net and asked him to send his studies in english, which he did.His data base was 63 patients and claimed he had great success through discovery of an inmunomodulator, which stopped the chronic inflamation of ichthyosis patients skin.It was my understanding he uses the body`s own defense mechanisms.Hope this helps. Good luck everyone.
_________________________
Les Avakian

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#15186 - 07/19/01 12:40 PM Re: how young is too young?
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
Hey Les--

Did he email his study to you (do you have it electronically)? Can you email it to us?

Laura

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#15187 - 07/20/01 01:39 AM Re: how young is too young?
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Laura, I have a copy of the report in English from Dr. Ramirez, that he sent me on January 20, 2001.His email address is ramirez@telconet.net. The report is 8 pages long and talks about his findings, studies, and his patients.His definition of immunomodulation is the adjustment of the immune response at a wished level;in his words, if the answer of the immune system is exaggerated (allergic) diminishes it, or if it is low (immunodeficiency) increases it.He must be using the immune system as a way of fighting off the chronic affects of ichthyosis.My problem is I suffer from C.I., not to be confused with C.I.E.If you would like I could send it snail mail, or inform me how to retrieve an email from Jan. 20.2001.Snail mail might be quicker than trying to enlighten me on the technical and electronic components of our times, but I will give it a try. LOL. Take care Laura, by for now.
_________________________
Les Avakian

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#15188 - 07/20/01 01:53 PM Re: how young is too young?
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
Hey Les--

Hopefully your nephew will be able to scan it. I think after people see this, you're going to be getting a lot of requests for it!

In the meantime, I'll email you my mailing address so you can just send me a hard copy.

Laura

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#15189 - 07/23/01 11:08 AM Re: how young is too young?
Lisa Marie Offline
Member

Registered: 01/04/01
Posts: 168
Loc: NY
Les - Laura is right. I would absolutely be interested in reading the doctors findings.
That would be great if you can post the results.
Lisa

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#15190 - 11/06/01 09:56 PM Re: how young is too young?
REBECCA Offline
Member

Registered: 11/05/01
Posts: 17
Loc: South Wales (U.K)
Hello my name is Rebecca my daughter Rhiannon is 5 years old and she has E.H.K. our doctor put her on neotegison when she was 2 but it had no effect , now that she is older he wants to put her back on it. my husband and I are undecided. first time round they did blood tests every 6 months they did'nt do any xrays , they did warn me about some of the side effects like dry lips, liver changes , but I was'nt told about bone changes Ithink my husband and I will have to do a lot more research before we make our minds up.
Thanks
Rebecca.

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#15191 - 12/27/01 04:14 AM Re: how young is too young?
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
2 things

I'd love to read that doctor's report and I can scan it, Les and then email to you and Laura and anyone else.

Second, I personally was put on Retinoids at the age of 12 I believe. I suffered quite a few side affects and in my opinion, it is not wise to give such drugs to anyone who has not yet gone all the way through puberty.
At the age of 3, a child is still growing so quickly and going through such an intense development cycle that taking a drug that has such horrible potential side effects and that is not required to continue living and functioning is too dangerous and not worth the risk.

Find out what the name of the drug is, and what dose he would wish to prescribe, and whether or not he would wish to modify the dose over time and by how much. Then, go buy a pharmacy guide or use one in the library to look up the drug and its effects. Scour the internet for information and THEN make a decision. Do not take the doctor's word for it, especially when he says none of his patients have had side effects. If that's the case, then I doubt he's ever treated more than 3 people with the drug, and if so, the dose was very very low and only short term.

I know I'm a real pessimist on the topic of drugs, so always consider what I say about them as the worst case scenario. I would simply rather see us all aware of the risks we run. On the other hand, I do not wish to stymie anyone's efforts to seek out treatment.
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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#15192 - 12/27/01 08:13 PM Re: how young is too young?
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Lisa and Chandra:
The article I saw was a study by Dr. Ramirez from Ecuador. He uses the immune system to help the affects of ichthyosis. I will send you the site.I hope it helps. Take care and by for now. Les
_________________________
Les Avakian

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#15193 - 01/01/02 04:59 AM Re: how young is too young?
Elise Offline
Member

Registered: 09/17/01
Posts: 28
Loc: Lynnwood, Washington
Olivia,
I second what Laura has to say and want to add one more thought to this complex and vexing question. I also have LI. I have tried retinoids for a short with good results. I went off them because we were starting a family. I am considering taking them again now that I am through but have not made the "plunge" yet.
I am a clinical psychologist and so I tend to think not only of the physical side effects but also of the psychological ones. The fact is at this time there are no "cures" for ichthyosis, only management. Retinoids give sort of a Cinderella effect. You look "normal" until you go off them. I will point out 3 problems with using retinoids at a young age in addition to what Laura has so well pointed out.
1) there is now quite a bit of evidence that Accutane in particular contributes to depression. I have studied this quite a bit and if you are interested I could send you some references. Depression is a sometimes overlooked but very serious side effect for those who suffer from it. There is less evidence for depression associated with Soriatane and others but they are related and the research is not out yet because they are newer drugs.
2) Retinoid use side effects are cumulative and some of them (bone changes) are stoppable but not reversible. There is a general concept among those of us that use them that there is a limited amount of time these drugs can be used. When you hit the "limit" and the side effects are too great you need to give them up. Those who start young use up this "allotment" early and have fewer choices later. Of course other less toxic treatments may become available... it is all a gamble.
3)A young child generally is not so concerned with their physical differneces and if they are not pitied and are supported and loved they can adjust fairly well and develop a healthy sense of self with their differences. Trying extreme things to improve appearances sends a message that they are not ok in their "natural" state. It is very difficult to get over feeling "not good enough" without drastic treatments. I always wonder what happens to people who use retinoids and then have to go off and adjust to their skin all over again. I know from experience and from talking to others that this can be difficult. I would imagine that it is especially difficult if a person had no memory of life without retinoids. I believe that it would be wiser to use them at 13 than 3 for many reasons. I hope you are able to get to the conference in Seattle and discuss this further with the many people and parents who have gone down this road before you. We all wish we could take a pill or do even an extreme treatment that would give us a cure or even an improvement but right now it is all hard choices. Keep up the good work. I believe little things add up to make things a lot better. By little things I mean things that make a bit of improvement such as: using humidifiers, vinyl sleep suits, eye ointment and eye shades, cool vests, the best lotions and creams, flax and omega oil supplements, a healthy diet, drinking lots of water, bath additives like salt and oils, regular exercise etc... Kudos to you for your hard work, worry and love you put into parenting. You parents of these sweet special children are real heroes... keep up the good work. Elise

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#15194 - 01/09/02 06:36 PM Re: how young is too young?
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
Elise,

All VERY good points. The emotional aspects of using/not using a retinoid are HUGE. For most of my treatment, I took drug holidays. Going OFF of Accutane was the HARDEST thing to do every year. I've met people who just can't bring themselves to EVER go off (emotionally) once they've started.

Thanks for bringing that aspect into the discussion. Definitely an important part of the decision process.

L

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#15195 - 01/10/02 12:44 AM Re: how young is too young?
Lisa Marie Offline
Member

Registered: 01/04/01
Posts: 168
Loc: NY
I wanted to say that Laura is absolutely correct. I have been on Accutane for 14 years and the thought of going off it is painfull to even think about - seriously. I take far less medicine than ever, but the fact that I look "normal" and am living a life as if nothing is wrong with me causes me to be "adicted" to this drug. I know when I am ready to have children I must go off of it, but I tell you this. There have been many times that I wish I had never gone on Accutane because I WAS happy before. You don't miss what you don't know and you adjust accordingly. Now I know I am going to have to put much more time into my skin care each day and look very different. For me it is a miracle pill - but a pill with a price. It's a huge huge mind trip that I believe a person should make on their own. And a child needs to develope and have an inner convidence that a pill shouldn't give so that if one day she does go on it, then it will be to physically feel more comfortable not to escape this disease.
Just my thoughts.

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