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Khloe

Khloe

Khloe harderWhen Khloe was one year old we found small round bald patches on her fore head.  We took her to the pediatrician for examination. The pediatrician didn’t know exactly what it was so they referred us to a specialist. A year went by and we had been to numerous specialists but none of them wanted to give us a diagnosis of what they thought it was. Meanwhile her hair continued to fall out and her nails (both fingers and toes) were becoming thick and deformed.

We were stressed out and didn’t know what else we could do so we started looking outside the normal area of doctors and insurance. My wife and I are not rich but that didn’t matter the only thing we wanted was a healthy child. We talked to everyone we knew and asked them to tell everyone they knew. We had all kinds of ideas, suggestions, home remedies and none of them worked. We talked to as many family members as far back as we could to see if anyone else had it or any signs of it, but no one could remember ever seeing it. So of course we turn to the all-powerful internet.  The internet had all kinds of illnesses and diseases and now we were scared for her life.

All the begging and pleading won’t fit in this article so we’ll just continue on. One day a friend that we didn’t think could help us called. The friend had a friend that knew someone with a rare illness. That person applied to a local doctor that travels the world trying to find cures and treatments for rare diseases.  After long days and nights of calling every number we could find we finally found them. When we called the office to apply we were informed that you must be referred and that it’s a cash up front establishment.

Finally an appointment (2 months later) with a doctor that we think is going to answer all our questions and cure our little girl. We waited two hours in the waiting room with no one else in it, but we were patient. We were moved to an exam room and waited some more. After a while a nurse came in and asked us some information about what was going on and got a patient history, then we waited some more. The doctor comes in and the first thing he says is “I can’t and won’t help you”. First my mouth drops open and then the anger builds up to where I thought I was going to beat the s--- out of this doctor. My wife asks why with tears in her eyes and he says because it’s alopecia areata. We still had no idea what he was talking about. The doctor explained to us that it was an autoimmune deficiency and that he wouldn’t take our money. Still a little lost he continued to explain, telling us that there are treatments but no cure and that he knows a doctor that would treat her and accepts our insurance.
 
Well another day and another doctor visit but today we have a name. We walk into the doctor’s office and it’s just another waiting room.  Khloe is full of energy and running around looking at all the magazines. The waiting room is filled with elderly people and we were the only young couple and khloe is the only child in the whole building. The nurse opens the door and calls Khloe’s name and it was like she just won a contest she yells they’re calling my name and runs to the door. This type of behavior had never been seen before in this office and some people didn’t know what to do or say, while it brought smiles to others. We were moved to a patient exam room where a nurse took some vitals and asked us what was wrong, Then we were back to waiting. Khloe still filled with energy wanted to draw with some pens she seen on the desk. My wife pulls an information pamphlet down from a shelf and gives khloe a pen. My wife and I were talking not paying any attention to khloe and the doctor walks in. Khloe has somehow gotten a hold of a surgical marker and has drawn on the desk, the chair and the wall. We didn’t know what to say, then the doctor bends down and tells khloe that the drawn is pretty and that she’s doing a great job. We knew right then we were in the right place to get answers and hopefully help our little girl.

We talked for a while with the doctor as khloe continued to draw on everything. The doctor educated us on what the autoimmune was and what types of treatments there are.  The doctor called in another doctor to look khloe over then we met the rest of the staff. Everyone was and still is super nice to us. We left the doctor’s office with answers and a treatment. The treatment was a liquid steroid that we apply to her scalp. After a few weeks we started to see hair grow but not without side effects. Khloe was only sleeping four hours a day. We were still going to her normal pediatrician but more frequently to monitor her health. After a while we noticed that Khloe had stopped growing, her weight and height never changed. Khloe was four years old but only as big as a normal two year old. Khloe’s body got use to the steroid and then her hair started falling out again. Khloe is almost five and she has no hair, no eyebrows, no eyelashes, and no nose hair. We have tried several treatments and none of them seem to work. Khloe is aware of what is going on and we teach her every day about it, while telling her it’s ok to be different.  So far Khloe is still an ever happy, outgoing, wonderful child but next year she starts school and we have no idea how to deal with that.

My wife and I have decided to send her to a private school and we’ve already spoken to the school’s principal. The school has already had a case of alopecia in the past but that was with a boy. We have a meeting with the teacher that the school thinks is going to be best suited for Khloe.  We also looked into getting her a wig to wear to school, but at this time she doesn’t want it………………..

Thanks for being there for people like us in a time of need. The Harder Family

 

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