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Living with Polyneuropathy CIDP, GBS, & CMT

Heartbroken, Depressed, Grief

Hello everyone. I hope you are doing well today. I am the mother of a child recently diagnosed with CIDP after an initial diagnosis of Guillain-Barre’ Syndrome.

I have been meaning to document the events that have unfolded in our families’ lives but have not had the time or opportunity to do so until today. I have struggled to find many/any resources for this disease and I would like to contribute what information we can about what we have encountered since the onset of this rare and mysterious illness. Perhaps the pool of data will increase and a unified theory may emerge, or at the least I can give an eye-witness to how this happened to us and perhaps others out there.

In January of 2016 my son began limping for no reason. He was 4 years old at the time and extremely active. We have two older children, he is our youngest. We are no strangers to minor injuries.

My first reaction was to check his feet for splinters, Why else would he be limping? He complained of no pain when I asked him. Did he step on a thorn in the back yard? His feet were flawless when I examined them. I decided to ‘wait and see’. With 3 children ranging in age from 4-12, not one had ever died of a limp before. I was quite sure as the days went by that it would disappear.

To my perplexion and dismay, his limp continued and became more pronounced, more noticible. I began wondering why it had not gone away, what was causing it? Why is there no pain? I could only try to answer that question with my own ideas…are his legs growing at different rates and now one is longer than the other? I measured each leg from hip socket to ankle, exactly the same size. Why is this happening?

Within a week to two weeks, he began falling to the floor for no reason. The first few times were not immediately raising new questions, kids fall. He would say “Whoopsy-Daisey!” and laugh. Rapidly though, within 3 days, he was falling up to 8 times a day. I could no longer deny that the falling and limping were related, and not something my splinter-hunting or leg-measuring were capable of curing.

One more thing began to happen that was the last straw. He could not get himself up from a sitting position from the floor. Never before had that ever happened to him. My heart was crushed to see him struggle in vain, to crawl to the nearest piece of furniture to assist him in pulling his body up.

As many a preliminary curiosity leads us, I turned to Google. “Son keeps limping and falling” I searched. As we all know, this turns up a plethora of suggestions that are not helpful or accurate. Just buying time I suppose, to stave off panic and the realization that there was something desperately wrong with my little baby. My pride and joy. My whole world began to turn dark as a black cloud emerged upon our lives.

Finally, I confided in my sister that I was baffled and afraid about what was happening. She, a Registered Nurse, validated my fears and suggested I take him to the Emergency room. It was the day we were to find out beyond a shadow of a doubt that there was something very, very wrong that would affect our son’s health for the rest of his life. Ready or not, here I come.

At the ER, we were evaluated in triage and asked a million questions. He was examined thoroughly. After 16 hours of waiting, the Doctors admitted they did not have the capability to properly diagnose him and we still had no idea what was causing his symptoms. We were transferred to Texas Children’s Hospital by ambulance. It was a terrifying experience for many reasons.

When we arrived, we were taken back right away. Pediatric neurologists were summoned and consulted with us back to back. Our family members arrived and we all began the waiting game again. An MRI and a lumbar puncture were performed. I didn’t have time to react, I was going on fumes of adrenaline.

The lumbar puncture came back showing normal proteins. The MRI however, showed something more sinister that led doctors to conclude that he was suffering from “Guillain-Barre’ Syndrome”. I could not pronounce it. They asked repeatedly if he had received a flu shot to which I always responded in the negative. I wondered why they kept asking that, later to find out the relationship between the two. In our case, it could not have been caused by the vaccination because he had never received one.

Well, it seemed everything was going to be okay for a minute. Guillain-Barre’, although severe as it can present, is curable. We were assured we had caught it early and that with a 5 day treatment regimen of IVIG, he would be good as new in no time. Hallelujah!

I felt the relief of knowing that my son was being treated with the best medication this Earth had to offer. Eureka! Guillain-Barre’ it is by golly.

To be continued…