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SANDRA LEE
10-22-2001, 06:19 AM
Dear Shanna,
My baby also had the horrible diaper rash that spread over her entire body.Within her 1st week of life. My pediatrican was baffled.
He made a crucial mistake. He sent me to an adult dermatologist.He gave me steroids that were too strong.

At 4 weeks I took her to the childrens hospital of philadelphia emergency room.
They were in shock when they saw her. She was the only child ever admitted to dermatology through emergency.They did mouth,skin and anal biopsies and cultures. Kylynn was diagnosed wih severe psoriasis.

Kylynn is 12 years old now. Her psoriasis still covers her arms,lower legs, scalp, face,and ears. She doesn'thave the traditional psoriasis on her elbows and knees. As she has gotten older the psoriasis spotsom her body,thighs and buttocks.As a baby these aeas were completely covered.

Listen to your Dr. because he knows the proper amounts of steroids to administer. All topical steroids need to be used sparingly. They are absobed into the blood stream through the skin. Drs. are always concerned with systemic absorbation. This means the steriods being absorbed into the blood stream and distributed to the organs and so forth. My daughter has been thoroughly tested through immunology and endocrinology. She shows no signs of systemic absorbtion.These creams and ointments are a hit or miss game. Kylynn has been able to tolerate some while others burn. We discontinue use of the painful ones.I would rater her have the psoriasis than the pain.

My daughter suffers with unexplained skin infections. These require iv antibiotics.

It is thought that the psoriasis all started with an allergic reaction to a yeast diaper rash at birth. She had thrush in her mouth and throat.

Although she is still covered with psoiasis, life is good. The other children are usually curious and usually nice.When people are curious it is important that we take the time to educate them. Then the next time they see someone with a skin disease they will be more intelligent and better informed.

I have taught my daughter and her sisters to play the "glad game". Be glad for what you have and stop freting about what you don't have. This past summer my daughter was able to attend skin camp in the Pocono Mountains of Pennsylvania for free after we heard about it on the kid's website. And she was recognized in the National Psoriasis Foundation Poster contest. Her poster is now a coloring picture.And she is the only girl in her school that can spell the hard word "psoriasis".

We don't let psoriasis rule her life.

Good Luck.
Sandy

Shana Hansen
10-23-2001, 06:15 PM
Dear Sandy,
WOW, I feel like I just want to reach out and hug you. It is so wonderful being able to hear stories from other parents and know that everything works out. This is just a quick note to say thanks. Lillian has had a bad breakout and has another abcess on her bottom so are running to doctors.
Take care
Shana

SANDRA LEE
10-24-2001, 06:15 AM
Dear Shanna,
I spoke with my sister in Texas. She works in a hospital in Fort Worth. She said you are using a GREAT HOSPITAL. FYI,we still use CHILDRENS HOSPITAL OF PHILADELPHIA, Dr. Honig is our Doctor. He is the head of Dermatology.

I wish you the best of luck with your daughter. I know it can be frustrating, it just takes time.

Take Care,
Sandy

elliesinger
10-25-2001, 05:07 PM
Sandy,
I just had to write, because I've read so many e-mails from Kylynn on the message boards. You should be so proud of her -- it's clear that she is a wonderful young woman. I'm very glad to see you here, too, because parents like you are such an important resource to the rest of us. Congratulations on the great job you've done of teaching your children about what's really important in life.

Ellie's mom, aka Jennifer

PJ Leary
10-27-2001, 11:05 PM
WOW Shanna..

Great job! Please let us all know more about how you all are doing.

PJ

SANDRA LEE
11-02-2001, 07:06 AM
HI EVERYBODY,
Kylynn and I are traveling to New York City on Tuesday to meet the President of The National Psoriasis Foundation.

Wish us luck!!I'll let everybody know what happens.

On Monday we are going to CHOP to see her bone tumor doctor. She might need a surgery. We will let you know.

Let's keep Shana and Family in our prayers.

Take Care,
Sandy