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Lessons Learned by a P-kid Mom
from Laura B.

Well Ed, you said you wanted to hear my son's story of how we found out he had psoriasis so here you are.  [See Another Good A&D Report & Child Scalp P -Ed.] This is Hunter's story:

When my son was born, I was in Heaven.  My labor had been quite easy, even though it lasted for almost twelve hours.  He was so beautiful. Even at birth, he had these gorgeous dark eyes and long lashes that just made me melt.  He had a lot of dark hair that was the envy of everyone.

At about one week, I noticed that he had a very red “diaper rash.”  The doctor said that it was a simple Staph infection and gave me medication to treat it.  Little did I know that this infection would change not only my son’s life, but my whole family’s  as well.

I took the medication home and in a few days the redness went away. However, within a week it returned with a vengeance.  It even started to migrate up his back and down his legs.  At this time, I also noticed that his mild “cradle cap” was getting so bad that I could no longer brush his hair without large chunks getting stuck in the comb and pulling out his hair.

I took him in to the doctor who was on call because my regular pediatrician was out of town.  She said that is was a yeast infection from the antibiotics he’d been given to combat the Staph.  She gave me a cream and I was off.

Over the next two weeks I saw three different doctors and all of them gave me different reasons and prescriptions for the little red creature with a crusty scalp that my son was becoming.  The redness from his bottom was migrating again and I also noticed that his “cradle cap” began to migrate downward as well.

Even though it was August and quite hot, I would keep my Hunter wrapped in blankets and hats to hide the awful redness and spots that were taking over his body.  I was not ashamed of my son, I just got tired of the stares and the comments from other people including family members.  I was even accused of mistreating and abusing him.

Finally, the last straw came when I was changing his diaper and saw blood.  I couldn’t find a cut or anything around his diaper so I thought it might have come from my hand.  That is until I saw it again in his next diaper the next day.  I went searching over every inch of my son’s body, in every crevasse and crack until I found it.  A one and a half inch split or slice along one of the fat folds at the top of my son’s left leg.  It looked as if someone had taken a razor blade and perfectly cut it.  I started crying hysterically.  I couldn’t take it anymore.

I called the doctors office and they fit me in later that day.  I was determined to know what was wrong with my beautiful little boy and I was not going to leave until I knew.  Luckily, my regular pediatrician was back in the office.  I took Hunter into the exam room and unwrapped his little six-week-old body from the blankets.  When the nurse saw him, she couldn’t hide the shock on her face. I knew then that I was in for a long visit.

She smiled after regaining her composure and quickly left the room.  I knew she must have told the doctor to come in as quickly as he could because it usually took about 15 minutes to be seen and he came in far less time.

Dr. H. took one look at my son and left the room without saying anything.  He then returned with two other doctors in the practice. They looked at my son for a minute, then left.   Again, my doctor returned with two different doctors who looked and left like the previous two.

A few minutes later my doctor returned with a large medical textbook. He opened it and showed me a picture of a young child who looked like a larger version of my son.  The doctor told me that he had good news and bad news.  He said that he was pretty sure Hunter had psoriasis.  But my son was not a typical case.  He said that children this age very rarely get it and he had never seen it this bad on a baby.  (My son was 90% covered at this point.) He also said that it typically ran in families, but there is no known case in ours.  Dr. H. said he’d seen P while in his residency program but honestly had no idea how to treat it.

He then got on the phone and proceeded to find a pediatric dermatologist for us to go see. In Utah there is a very good children’s hospital.  My doctor called there and after getting the run around by various secretaries learned that a pediatric dermatologist had just started at the hospital and was to begin seeing patients the next day. Then he found she was booked solid for the next three months.  He told the secretary that he was a doctor and needed her paged immediately.  A short while later she called him back.  Dr. H. explained Hunter’s situation and she said that if we could be in her office tomorrow morning, she would see my son.

The next morning we saw the woman who has since been Hunter’s and my God-sent. To this day, this woman, Dr. V., is the only doctor my son likes.  She looked at my son and took pictures.  She told us that she was pretty sure that our insurance company would try to deny the bills, saying that children don’t get psoriasis.  She told us not to worry and she would help us get them to pay for everything they should. She explained exactly what psoriasis was, what treatments were available and told us honestly what the odds were with our son.  She ran blood work and a biopsy to get a proof positive diagnosis so that the insurance company couldn’t deny the claim.  She told us how she would like to approach the treatment and encouraged us to find out as much information about it as we could.  She even told us about the National Psoriasis Foundation and said they would be the best help.

The treatment started out with tar baths and shampoo, Lotramin to help with itching, A&D ointment to moisturize and drops for the occlusion treatments to his head.  As the years went by we have tried the steroids, Desonide, Tazorac, Dovonex and  countless other creams and goops.

Now my son is seven years old and on UVB treatments which have been another miracle.  We have a home unit that Dr. V. found and had donated to us. My little man loves doing them.  During the summer he gets natural sunlight and the only drug I use on him is the occasional Dovonex for a spot and tar shampoo.  Then the light treatments start when it gets cold.  I don’t want my son on steroids and other drugs. I know they help, because we have used them in the past.  But I also know that he will most likely have this for his entire life unless a cure is found.  If something that is as simple as sunlight works for now I will use it to keep him safe from the side effects of the other drugs.  Drug companies don’t test on young children like my son so I don’t want to risk his health on a chance.  When he gets older he may have to take cyclosporine or methotrexate.  He may even get psoriatic arthritis.  But I know that if it happens, it happens.  I can’t change it.

Yes, in a way I have psoriasis too.  I am the one who has bathed him, put the creams and goops and medicine on, and I have been the one to take him to the doctor.  I have gone to his school and talked about it to the students and even educated the school nurse about it. I have watched him scratch until he bled and then I have soothed him for hours on end during the night so he won’t scratch more. I have watched and had my heart break when people have stared at him and been cruel to him.  I have cleaned up the flakes, the blood and the stains.  I have heard him cry at night when he thinks no one can hear.  I have cried at night when I think no one is listening. He has told me that he hates me for causing this to happen.  Yes, I have even blamed myself for his condition and sadness.  I have also wished that I could take it away from him and put it on myself so he doesn’t have to suffer.

However, now when I look back on his life, I wouldn’t change a thing. If he didn’t have psoriasis a lot of different things would not have happened.  I don’t think I’d have the special closeness that I have with him.  I know when he hurts and he doesn’t have to say a word. I have a special bond with him that only his P could have created.  I love to feel his skin, plaques and all, next to mine because I know that it is him.  Most people would say that I feel this way because I am his mother.  I say that I feel this way because he is my son.  God saw that I needed him, psoriasis and all, and gave him to me.

What we have gone through is nothing compared to what we have learned. I have a seven year old who is compassionate about the feelings of others, who knows and understands how cruel it is to tease and who stands up for people who are being treated poorly.  I look at him and wonder if I will ever be as strong.  He has taught me so much.  I don’t look at others and judge them anymore.  I look and try to see what a person’s heart is worth not what their appearance is like. I was always told that growing up but I don’t know if I even really understood it or even practiced it.  I know now that a person’s skin may be their largest organ, but their heart, mind and soul are of more value.  After all, a person’s skin always falls off in the end.

I hope this helps other people somehow to understand what it has been like for me and my family for the past seven years.  Maybe someone else will learn something from us and be stronger for it in the end.  I know I am.

Thanks for the laughs and the website. -Laura a.k.a. PsorMommy

*****

Ed’s Response:  No, Laura.  We thank you.  I’m so glad you shared this and that yours and Hunter’s story will be a part of this place from now on.  It will be referred to frequently.  Whoever reads this cannot help but become stronger.  -Ed

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