Chronic Inflammatory Demyelinating Polyneuropathy

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).

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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

bicycle. We honestly just thought he was just more interested in a game or TV or something and may have been being a little lazy. He was acting totally normal otherwise.He has this silly way that he walks, or so we thought, and we can’t quite remember how long he has been walking like this. We have an opinion that it’s been progressing since some time in January. But he definitely didn’t learn to walk this way and used to walk much better.I had also noticed that he was so much slower, unsteady, and taking forever to get in the car. He is 4 so he has his own free will obviously and sometimes I thought he was just being distracted or just didn’t want to do it. It has been such a gradual thing that nothing like sticks out as like “the” moment that it all started happening.

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).

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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!”

Ok. So that nerve conduction test and his EMG were the most traumatic events of my life. They were awful… like Frankenstein awful. Wes and I left there saying “if those tests don’t show us something, then we might have a panic attack” because they were that bad. He had those done on March 22. He had a physical therapy evaluation on March 23 and that was my breaking point. He was 51 months at the time and had regressed to a 34 month old. It was horrifying, terrifying, devastating, and it felt like I was losing my kid.
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So even though that day was my worst day, it was also my greatest day. After I had come home with Eli (after being showered with all kinds of kindness from my boss James, Amber, and Joley) after the evaluation, I was laying in bed just sobbing honestly. I didn’t know what to do or who to talk to, so I just had to wait.
About 40 minutes after I got home, we received a phone call from Eli’s neurologist, Dr. I, and she said without a doubt she knew what he had and it was treatable. After those words were spoken, I was sobbing again, but for a whole new reason. Treatable.
We have been completely been covered with prayer, gifts, donations, laughs, and understanding from all of our loved ones. It’s been incredible.
Since then we have been spending 5 days a month driving to and from the treatment center at Children’s Medical Center in Dallas. He had to go thru 6 rounds of treatment (1 round = 5 consecutive days) of ivig treatment.
Looking at him now you would never even know a thing was wrong with him. The reflexes that he lost are back. He is performing at the level a kid his age should be performing at. He can walk in a straight line and do every single test that he failed his first time around. He knows tons of new words. haha… he talks about his veins, his treatment, which hospital they are going to, which side his iv goes on this time around, and knows that he has to stay hydrated and tells us that constantly.
He is amazing.
We could not have done this without you. We could not have done this without Jesus. Thank you so so much.
xoxo,
A
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5 responses to “Chronic Inflammatory Demyelinating Polyneuropathy

  1. He is amazing. So are you, Amanda. I teared up the first time I read about it on fb, and again just now. I’m so glad he’s better!!!!!

  2. Oh my. What a sweet story amanda!! You are so strong…I just can’t even imagine going through all of that. Your family is so awesome!

  3. Eli is amazing. You are amazing. GOD IS AMAZING. I cn still remember bawling like a baby because i thought he had a brain tumor. PTL for complete healing!!!!!!

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