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#15252 - 05/02/03 08:33 PM Soriatane for a 3.5 year old
toyahmiss Offline
Member

Registered: 05/02/03
Posts: 27
Loc: Etobicoke, ON, Canada
Hello
I have a 3.5 year old daughter who has an undiagnosed skin condition; it's probably CIE but the dermatologist has bandied harlequin and netherton's too.

The dermatologist has just suggested putting her on soriatane but having read about the bone spurs etc with accutane on this bulletin board, I'm now really concerned about giving her a related drug at such a young age. Plus at the moment she is confident in herself and making good progress at nursery; I don't want her to start getting hung up about her appearance to the public already.

Does anyone have any advice or comments that would help us?

Thanks

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#15253 - 05/02/03 11:17 PM Re: Soriatane for a 3.5 year old
Anonymous
Unregistered


Toyahmiss,
I'm sure you've read how I feel about retinoids, in fact I just came from the doc yesterday and saw a new xray of the big bone spur that is forming on the edge of my hip socket and the absence of cartiledge in the socket. In my opinion 3 1/2 years old is way to young to be on any form of retinoids. The only way I would consider giving a 3 1/2 year old retinoids was if it were relieve a life threatening situation, then the risks may be worth the possble side effects in the future. Since as you say she is confident and making progress at her nursery I see no reason to put her on them, it would only be a temporary relief with possible long term side effects.
Keith.

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#15254 - 05/03/03 12:24 AM Re: Soriatane for a 3.5 year old
rjbrown Offline
Member

Registered: 08/23/00
Posts: 39
Loc: henderson,ky,us
Hi. From what I read, 3 and a half is too young for soriatane. Most say to wait till bone growth stops.I have been taking it two yrs. and love it, however, I'm 52 and weighed the pros and cons carefully. Best regards, Randy

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#15255 - 05/03/03 08:12 PM Re: Soriatane for a 3.5 year old
mary bellucci Offline
Member

Registered: 09/29/00
Posts: 67
Loc: Edinboro, Pa. USA
My son is 17 and his doctors feel he is still too young to take any retinoids and I fully agree.

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#15256 - 05/05/03 04:34 PM Re: Soriatane for a 3.5 year old
toyahmiss Offline
Member

Registered: 05/02/03
Posts: 27
Loc: Etobicoke, ON, Canada
Thanks to everyone for their advice. Sometimes it is difficult to go against a specialist's advice but I feel much more confident about disagreeing now.

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#15257 - 05/05/03 06:49 PM Re: Soriatane for a 3.5 year old
KatieCakes Offline
Member

Registered: 05/05/02
Posts: 118
Loc: Boston & South Attleboro, MA, ...
Hello all, well usually me and keith have slightly different takes on retinoids [img]http://www.ichthyosis.com/ubb/smile.gif[/img] but in this case I fully agress with everyone..that is wayyy to young to start them. And if my skin hadn't improved so dramatically with accutane and without side effects (knocks on wood) i would say i started to young as well which was when I was 9.

Katie

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#15258 - 08/12/03 11:57 PM Re: Soriatane for a 3.5 year old
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
In my opinion, no one should take retinoids until they are past puberty and mature enough mentally and emotionally to evaluate whether or not the benefits are worth risking the side effects. While I haven't taken Soriatane, I've take Accutane and Methotrexate (spelling?) in the past.

On the Accutane my joints ached incredibly, and my depresssion became unbearable.

On the Soriatane, I couldn't eat at all and lost so much weight that I was ordered off it.

Katie is a very positive but rare exception to the rule in that as far as we know, she hasn't had any ill effects. The retinoids are ok when taken for short periods of time (such as to treat acne, which is typically what they are designed for) but for long term use, they can be quite dangerous in that they can cause life long side effects that can inhibit one's physical comfort.
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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#15259 - 08/13/03 05:59 PM Re: Soriatane for a 3.5 year old
Annamarie Offline
Member

Registered: 07/22/03
Posts: 64
Loc: La Mesa, CA.
My son was born prematurely 33 weeks with Harlequin Ichthyosis. At 16 days old he was started on Accutane. He was on Accutane for short periods throughout his infancy and early years. He was monitored closely with blood tests and x-rays. There did seem to be benefits initially with this, but over the years it was harder to tell, and the potential side effects were always a concern, and it was discontinued.

His Ichthyosis seems to get better and easier to manage as he gets older. The things that seem to be the most important as far as maintaining the condition of his skin are nutrition and aggressive skin care.

It has been a struggle over the years, and he has been hospitalized with infections many times, but seems to be getting better as he gets older.


Hope this helps.
Annamarie

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#15260 - 08/14/03 03:49 PM Re: Soriatane for a 3.5 year old
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
Yes, my lamellar icthyosis has improved with age. Part of it is because I have learned better methods to take care of it, and the other bit is simply age.
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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#15261 - 05/29/07 07:15 PM Re: Soriatane for a 3.5 year old
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
Hello,
I actually have EHK but was diagnosed with CIE as a child. I am now 35 and have taken Soriatane since I was 17. I didn't start before then because my father (happens to be an orthopaedic surgeon) knew better. The drug can have an effect on the growth plates.
While I credit my standard of living to Soriatane I think that starting it should wait until the late teens or early twenties.
I hope this helps. [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

[This message has been edited by Sarah Helen (edited May 29, 2007).]
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#15262 - 06/02/07 04:28 AM Re: Soriatane for a 3.5 year old
momof3 Offline
Member

Registered: 04/12/07
Posts: 209
Loc: SJ, CA USA
I know this is a rather old topic, but I'd love to add my two cents. Because our son Dane is not yet diagnosed, my husband and I were desperate to try just about anything (already did the whole homeopathic route). Anyway, our derm thought it'd be a great benefit to Dane (2 at the time, now 2 1/2), to first try Methatrexate and then if that didn't have good results, to try Accutane. He told us the Methatrexate dose was about 1/50 the strength a cancer patient would take, so after much thought we tried it. Dane turned white after one dose, but lab results proved it was too hard on his liver (enzymes went up to 750, normal shouldn't be above 50). Thus, we tried the Accutane. We only saw improvements on his hands and feet (no more skin build-up), but it completely dried him out (which he is already) and he began to get even more bouts of MRSA (which he is still battling). We gave it the good 10 week trial, and took him off after he started whinsing when I'd pick him up. I'd bend down and gently pick him up from under his armpits and he'd say "OW Mama!". The derm tried to convince us to keep him on it, but we just took him off on our own. My husband and I are independent thinkers (my husband is an orthodontist, so he has a medical background along with his dental background). We really looked into and discussed the pros and cons of trying these treatments. I think it really comes down to the fact that we were just grabbing on to that last bit of "What if this is treatable" and gave it a shot. No more for us. Dane probably does have Netherton Syndrome (although he did not test positive), so the best thing for my family to do is to treat his skin as best as we can, wait it out, and continue to pray for a treatment for all forms of ichthyosis. I'm sure many adults are getting great results from the same treatment, but our bodies change so much from infancy to adulthood. If we could do it all over again, we would skip the trial and save it for another time.


Good luck. I hope this was of some help to you.

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#15263 - 06/21/07 06:02 AM Re: Soriatane for a 3.5 year old
ola Offline
Member

Registered: 09/11/05
Posts: 48
Loc: egypt
[QUOTE]Originally posted by momof3:
hi momof3
my daughter is also 3y with LI her derm. refused retenoids before 13y but he stared local retenois in the most thick scaly area ,they are useful. as I am a dentist I have my medical reading so, I WAS ADVICED TO GIVE HER betacarotene wich is the precursore of vit. A in the body to give the same effect as VIT A do u have any idea about it? again I send mail to Dr. Tirant in this link {www.psoriasisandskinclinic.com}and he promise me with management ichthyosis can u go such link and told me your opinion specially that your husband is a dentist too
best regard
ola
_________________________
ola

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#15264 - 07/23/07 06:14 AM Re: Soriatane for a 3.5 year old
momof3 Offline
Member

Registered: 04/12/07
Posts: 209
Loc: SJ, CA USA
No, I hadn't heard of using betacarotene, but it does sound less toxic than using Acutane. We are currently seeing a specialist at UCSF who did mention the benefits of using Tazorac as well for thickened areas of skin. We have another appt. in 2 weeks and I'll ask her about the betacarotene. I looked over the website you mentioned, and I don't doubt that this doctor has helped people with herbal remedies. I have a friend that truly believes in using herbs for wellness, I just can't say that I've had as much luck with them. Dane seems to be very sensitive to certain herbs. I'd proceed with caution, but maybe try very small doses at first, and not more than one supplement at a time. Dane really has a hard time digesting many herbs, but that might just be him. There's another website I came across last year (I think it's www.themerryclinic.com) who also swears by their herbal remedies. I have to admit that the topical cream and scalp oil was very soothing to Dane's skin. I was too worried about trying the oral supplements, as Dane was on many medications at the time and I've always heard that it's not good to take herbal treatments while taking prescribed medications. Does your daughter take any other medications? If not, you may consider trying the supplements in very small amounts.

Quote:
Originally posted by ola:
[QUOTE]Originally posted by momof3:
hi momof3
my daughter is also 3y with LI her derm. refused retenoids before 13y but he stared local retenois in the most thick scaly area ,they are useful. as I am a dentist I have my medical reading so, I WAS ADVICED TO GIVE HER betacarotene wich is the precursore of vit. A in the body to give the same effect as VIT A do u have any idea about it? again I send mail to Dr. Tirant in this link {www.psoriasisandskinclinic.com}and he promise me with management ichthyosis can u go such link and told me your opinion specially that your husband is a dentist too
best regard
ola

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