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Six-year-old Responding Only to Steroids
from Betsie

Ed: I’m a new reader. I have a 6 year-old son with P. I hate to see him so young with this. Luckily he is not bothered by his appearance — yet. I am sure someday he will be.

We have been to 3 different doctors for this. The only meds that work are steroid-based and dangerous to use regularly. I am now trying Flaxseed Oil as a last resort. The last doctor did tell me to use lotion on his body 2 to 3 times a day. We use all fragrance free soaps, detergents, etc..

Is P caused by stress at all? I know very little about P and am trying to find that miracle cure so that my son doesn't grow up compelled to wear long pants in 90 degree weather to hide his legs and body.

Do you know anything about DesOwen?

I know Dovonex makes his P much worse.

We have tried about 5 different meds so far, nothing has really worked except the steroids.

Can you shed some light on this for me? Thank You. -Betsie

*****

Ed’s Response: Hi, Betsie. Your son most likely isn’t going to have to worry about wearing long pants forever. By the time he’s a teenager chances are very good P will be cured — or at least permanently thwarted — by safe drugs targeted at the specific cellular processes that manifest P. So, your task is to get him through the next decade or so.

It sounds as though your 3 docs have been very sensitive to your son’s tender age. If DesOwen is the only topical corticosteroid he has used so far it indicates your docs are reluctant to hit him with the high-powered formulations upon which many of we adult flakers depend (DesOwen is a mild topical corticosteroid). This is surely a wise approach, because even the efficacy of corticosteroids wears out.

Many flakers have tried flaxseed oil and some percentage of them respond positively. It does no harm to determine if your son is among the lucky ones who do benefit from flaxseed oil. You have probably already learned that managing P is a lot like playing the table game, Clue. You start out with lots of possibilities — people, rooms, weapons — and you proceed to rule them out, one by one, as potential murderers, crime scenes, and murder weapons. Flakers start out with an abundance of possible treatments — many traditional, many more homeopathic — and, one-by-one, they rule them out as effective in their case.

The advice you have received to use lotion on your son three times a day is also wise. While moisturizing only reduces P for a very small percentage of flakers, it helps curb the itching. Children your son’s age have a hard time not scratching when they itch, and scratching exacerbates the P lesions. Any therapy is likely to work better if your son can refrain from scratching or picking at the lesions.

But there are many, many therapies you have not tried, yet. Perhaps the most common therapy for children with severe P is light therapy: UVA, UVB, or PUVA (a combination of the drug Psoralen with UVA light treatments).

I encourage you to join the National Psoriasis Foundation and request these booklets right away:

Overview of Psoriasis Treatments

Young People and Psoriasis: Infancy through Adolescence

A Guide to Understanding Psoriasis

Also, when you join request a copy of the book, Psoriasis: A Patient’s Guide by Nicholas Lowe, MD, FRCP.

Note: There is no set membership fee for NPF. You can join by paying whatever you can afford. For more information (and a list of their other print resources) visit their web site.

Finally, very soon (this Fall or Winter) the NPF is going to have a tremendous web site for P-kids and their parents. You may have to be a member to enjoy all the benefits, but your son is at the age where he will derive maximum benefit from this new and engaging on-line program, which will serve him throughout his school years. Just another reason to join!

Good luck and stay in touch with us. Let us know how your son progresses. -Ed

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