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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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