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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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