In remission from CIDP
AnonymousDecember 27, 2008 at 8:39 pm
I was really afraid of writing because somehow I feel as though it is a dream. I have been trying so hard to block the last 4 years and 7 months out of my mind.
Joey was 5 when he was diagnosed with CIDP. And this is our story.
When Joey was first diagnosed, he could barely walk, hold a cup, or straighten out his hands. The spinal tap that they gave him, tore us apart to watch. His protein was severly elevated. After the first dose of IVIG, he was able to straighten out his hands, and throw a ball. We thought it was magic and that was all behind us.
After about 6 weeks, he started to weaken again, they told us to return to the hospital and there our long journey began. The first year we spent almost a total of 9 months in the hospital. We were driving about 3 hours to Pittsburgh, for the closest childrens hospital. We were instructed that this was our only means of IVIG, so we went from driving every 6 weeks to every 2 weeks to get his IVIG treatments, because Joey was getting worse. The doctors were having us wait until he showed signs of sickness before treating him. He was not doing good. I was scared, so I started looking for alternative hospitals and doctors.
I was greatful that the doctors we had were helping us, but scared because he was getting worse. I found a wonderful doctor at John’s Hopkins in Baltimore. I set up an appointment the second week of January 2005 for his first appointment with him. I was so glad I did that because at Joey’s last hospital stay, the team of doctors told me that they did not know what else to do. The told me to take him somewhere else, they recommended Philadelpha. I told them I already had an appointment else where.
It was January of 2005 and I just gave birth 4 weeks prior to Joey’s little sister and we were on our 8 hour journey to Baltimore. The doctor there agreed with the diagnosis but not the treatment. He wanted Joey to get the IVIG treatment before he showed signs of sickness. He set us up so we could get his treatment every two weeks to start. He even told us that we could get the IVIG treatment at home. That did not work well because the nurses could not get a line started and we would always end up at the emergency room to get the line started. We did however find a place called the regional cancer center who gave ivig treatments.
Joey went from every two weeks to every eight weeks, over the past years. He had several set backs. There were times we had to make several trips to baltimore in a few months. Sometimes he would get a cold and he would need a treatment sooner than he was supposed to. Stress also seemed to play a factor.
On September 22, the doctor suprised us with the news that this was going to be his last appointment. We could not believe it. He said Joey was in remission.
He has not had a treatment since August 1st. And I feel like we were blessed.
I wanted everyone to know that has cidp and those that care for them, that there is hope and that anything IS possible. I also recommed getting involved in the treatment, document everything that you receive. I was writing the batch numbers down on the IVIG he was getting. Also I found out that they do make IVIG in littler doses that can be combined. I became involved. Because everyone can make a mistake.
I also found out that all insurances are different. I was lead to believe that we had to go to pittsburgh for an appointment for a refferal or our appointment in baltimore would not get paid for. We went in tremendous debt our first year. I learned the hard way.
I wish all of you receive the news we had gotten. I know that all cases are different, but with that there is different kinds of hope.
If anyone has any questions on his treatment or need advice with insurance, please don’t hesistate to ask.
God Bless and Merry Christmas.
December 27, 2008 at 11:16 pm
Hi Joeys mom!
How wonderful for You and your family. I dream that one day too we will have this news. Thank you for your phone # on my pm. I can’t wait to call you.
Dawn Kevies mom
AnonymousDecember 30, 2008 at 5:28 am
I am very happy to hear about your son’s remission. It is great news to hear that things came under total control. I am a strong believer that the human body does change at specific time intervals through life. Many kids with asthma and other problems simply grow out of them when their body shifts gears. Great News for everyone to hear and a wonderful story also. tim
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