Wednesday, May 16, 2012
It's a cruel cruel world!
When Kline was about 6weeks, I remember sitting ( which I say jokingly, as I ripped all the way and broke my tail bone during his high forceps delivery, I "sat" on a pillow for a year) in the back seat of the car watching Kline sleep. I started to cry thinking about how little and perfect he was...and how I did not want him to suffer as we do here on earth.
I didn't want him to feel pain, mental, physical, or emotional. I wanted to spare him from the hard parts of life and only let him have the great moments. I weeped for what I thought my son may go through in life, I had no idea what was really in store for him.
This past year has been nothing but painful for Kline.
We started last summer off with Kline stepping on a huge price of glass. I mean the gash in his foot was 2 inches long by probably an inch deep. I rushed him to the emergency room and then had to hold him down as they stitched him up. The pain was incredible and we were both balling uncontrollably. It was the first time I had really seen him in uncontrollable pain. It was heart wrenching and I had begged god that that would be the most pain he ever had to experience, I guess god wasn't listening to my prayer. The recovery was miserable, he crawled for about 2 weeks and we got ride of all glass in our house! :-)
Then, in the fall, Kline started to complain about it hurting when he pee'ed He would hold his pee for 21 hours and run around the house all day in pain trying to hold it. He also, had developed a full body rash that the doctor's believe was strep even though he tested negative for it. (uh, red skin anybody?) Finally, after sonograms, blood work, urine samples, and a week of pure agony, a urologist took one second to look at his peenee and saw that his for skin was closing up on itself and created scar tissue. Which as we now know was From his red skin syndrome. Another terrible surgery on his penis and a god awful recovery. Note, nothing was ever done about the rash, once they discovered it was not strep they did not talk about his rash anymore. So, once again, I prayed that this would be the worst thing Kline ever had to go through, god still didn't listen!
Then, this past February, Kline got sick...his all over skin rash came back and way worse this time. He also had a hard time breathing and we went in to the doctors again. Once again, even though the tests said negative they said because of his rash he has strep. Not even listening to his lungs, because they were positive that the rash meant strep.
2 days later when the antibiotic did not work and he was way worse and so was his full body rash, we went back into the doctor and they listened to his chest, pneumonia. At this time, the doctor asked what I was doing for his "eczema".... I told her that none of the antihistamines and topical steroids we working any more, they burned him like crazy and that we had stopped them. She said, "well, you see what happens when you stop them, you did this to him!". Thanks doc, way to make a mom feel even more guilty!!!! And for the third time I prayed to god that he would be spared anymore pain in the future, I started to wonder.....god, did I do something to piss you off or what?
Well, after kline's pneumonia got better his skin never did! It just kept getting worse and worse. The steroids kept burning more and more. I emailed kline's allergist and was told that he knew the topical steroids would burn but they would not hurt him. That we should push through the pain and use them anyway.
At that point my husband and I decided to stop all topical steroids and start looking else where for help!!!
Which brings us to today, with him in the worst hell any of us have ever experienced! Topical steroid withdrawal is by far the worst pain any one in my family has ever seen. It is pure torture and I am praying so hard that this will be the worst thing my son ever has to go through! God I hope you are listening this time!!!!!! I really don't know if he could experience anything worse then this physically. So, we are almost in our 3rd month of withdrawal and he just went through a terrible week long flare, no sleep, unbelievable itching and burning, oozing all over, and
His ears even started to swell. I hope that we will start to see some relief soon, this next year can not go fast enough!
If I only knew, in that car 3 years ago , what he would have to go through because of the medicine I was going to be giving him. I wish I could go back in time and tell myself all that I know now. That is why I write this blog, in hopes that it will warn another loving mother of what hell their beautiful babies future could be if they go down the path Kline went down. No one should have to watch their baby suffer as we have to....day in and day out, there is no relief for my poor little baby.
Gotta run the itchy bastered has come again to torture my baby!
One sad sad mama, Loren
Please sign this petition! And help to warn others of kline's hell red skin syndrome! Thank you!!