My son, Eli, who is 4, was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) on March 23, 2012. (I will be uploading some videos and pictures of him but he is literally in treatment right now as I type this and he has the ipad, which they are on).
Here is an excerpt that I posted on fb on March 15, 2012. “For a few weeks Wes and I have been making the comment that Eli has seemed more tired lately. He didn’t want to go on walks with us for very long and he didn’t want to ride his
On Sunday, March 11, I was just totally in disbelief at how he was walking. It’s not like he was all of a sudden walking erratically but it was just at a moment where I was like, “Wes, watch him. This is not normal.” So we had him practice walking. My mom called around that time and I told her what I thought and she had the same concerns.
We went to his regular doctor on Monday, March 12. She is incredible and amazing and I can never have enough good things to say about her. She has literally walked with us through every step. She obviously had some concerns and started calling her trusted neurologists and had us go to the hospital that evening.
Eli was admitted that night and went through a CT scan (all clear), an MRI (everything looked as it should), a spinal tap (all was normal except he had elevated levels of proteins), regular blood work and urinalysis (totally fine there too).
He worked with a physical therapist who felt like there was some weakness in his muscles. Cause still unknown and will have follow up appointments.He had a lot of blood drawn today, March 14, which they will send off for a lot of different things. They are mainly looking for immune disorders or anything abnormal in his blood. Those results will take a week and some more probably.He will also be getting a nerve conduction test (EMG) to test his peripheral nerve systems and see if there is something going on there.
Everything cognitive and personality wise is totally the same. He’s his same happy go lucky kid he has always been.
He walks in a way that you would probably describe as him being silly. He kind of moves his arms back a little and leans to the right a lot where it looks like his left hip juts out a little. He doesn’t really walk in a straight line. He kind of gravitates toward the walls eventually or will just end up holding your hand. His balance is really off. He stands really wobbly and takes a second to get his stance steady if you want to like throw a ball to him or something. He also has been stumbling a lot lately when he is walking.
We are hoping for the best in these results. They have told us that they might not find anything, so we will just have to see.
Thank you for your prayers, loving words, and hugs and gifts! We are so grateful!! We are very ready to know something or for him to just start getting better. :)
Lots of love!”