Shannon’s Story

    • Anonymous
      April 4, 2008 at 11:05 am

      Our family is US Air Force. All three of my girls were born “military babies” and we live in military base housing on Tinker AFB, Oklahoma City. We will live here for only eleven more days, at which time we will move into the house we just bought in SW Oklahoma City. On May 1st, my husband will have officially given his full twenty years to the Air Force, a veteran of two wars and four conflicts. He retires from one career, now four months into his second.

      My youngest daughter, Shannon, first became sick on February 28, 2007 [B]within 36 hours of receiving her first ever flu vaccine[/B].

      She was twelve years old.

      Hers was not the “typical” GBS… and that “square peg” became the epicenter of a [B]nightmare[/B], now more than a year ongoing. 🙁

      It began as weakness, and slight numbness, resulting in loss of control in her right hand making it nearly impossible to grip anything, including her pencil during class. The same sensation then developed in the left hand within three days, causing both hands to become equally involved. The weakness began moving upwards attacking both wrists almost simultaneously.

      Within ten days her left foot became weak with slight tingling that came and went. Two days later it had moved up to her ankle causing her to stumble off and on. It was ten more days before it also affected her right foot and moved upward to that ankle. By the time her legs were involved as far up as her knees, routinely collapsing beneath her, she was suffering from fatigue that caused her to sleep for up to twenty hours at a time.

      Though Shannon’s pediatrician acted quickly, sending a referral to a neurologist on our first visit, the medical insurance for military is considered an “undesireable” among specialists, and there was, quite simply, no “takers” to answer his call. Despite her doctor’s repeated phone calls directly to the Neurology department at the University of Oklahoma Medical Complex, no neurologist had been found [B]four weeks later[/B]! This didn’t shock me, however. I had been sick for ten years through five different “diagnoses,” all made by general practitioners who were “giving it their best shot.” This was also due to the complete lack of interest by any neurologist once they discovered the insurance I had. All of those GPs were wrong, as it turns out. Last November I was finally given an MRI, and then promply diagnosed with Multiple Sclerosis.

      During the four-week delay while our pediatrician begged for a neurologist :rolleyes: I researched every article written on every form of Guillain-Barre I could find on the internet. I became quite educated on the subject, just in time for OU’s Neurology department to comprehend the bottom-line in the many messages left for them by our pediatrician, and realize that they might have ignored a potentially serious situation in their apathy. The result was an audibly panicked call to my home from this very same, clearly disinterested, Neurology department, urging (actually ordering) me to rush my daughter to the emergency room of OU’s Children’s Hospital within the hour!… [B]five weeks after her symptoms had first begun[/B]. I was sure the panic I was hearing was an urgent need for them to cover their own hineys as soon as possible, and I regret that I did not follow my instincts and refuse that ridiculous demand.

      Instead I did as they asked, and subjected my daughter to a five-hour wait in an overcrowded ER, feeding her dinner from a vending machine and finally trusting her to the “soup-of-the-day” neurologist who might very well have been a neurology resident. Despite the information I detailed for him concerning the progression of her condition, and the article print-outs I had brought along (authored by neurologists from both the Mayo Clinic and the Cleveland Clinic) describing atypical forms of GBS most common among children, he made no effort to disguise his complete lack of interest in my opinion. He dismissed the very suggestion that Shannon could have some form of GBS, explaining that the paralysis of Guillain-Barre [B]always[/B] begins in the feet, symmetrically, and progresses upward, causing respiratory failure and the need for a respirator until it recedes in the opposite direction, also symmetrically. He also made sure to speak to me as if I were either mentally disabled, or English was my second language. He suggested an MRI which I knew I could not responsibly decline, and we left after being told it was normal. I couldn’t wait to get away from that pompous idiot and I considered demanding that he either return my wasted time to me, or use it to crack a [U][I]New England Journal of Medicine[/I][/U] maybe once-a-month! 😡

      Now, a year later, Shannon still suffers from extreme fatigue, and her GBS symptoms relapse and remit. She easily becomes ill with fevers, infections, and every virus that comes within a football field of her. She has missed so much school this year that I may have to fight the school board so that she can move on to the ninth grade, despite a GPA of 3.7! The stress, and misplaced guilt she feels is so great that she has had to start seeing a psychologist. And then last week, in another marathon attempt to find the answer to my daughter’s pain, I discovered the existence of CIDP. Now I believe I have found the answer. I hope I can be persuasive when I present this information to her pediatrician next week.

      In any case, I know that I am relieved to have found this forum.:)

    • April 4, 2008 at 11:41 am

      Hi Welcome,You probably would prefer to be welcomed into some other club, as would I!* But a nice club we are!* My son is 11, 10 when dx.* I too fought the battle with the docs.* Thankfully insurance was not an issue and I was able to move to different docs.* Our first neuro., considered one of the top peds neuros was a wack job, told us it was psychological and we probably push him in sports.* Second one a week later said cmt, a form of md, the third, our Godsend, by some miracle returned my call without ever meeting or talking to me when his secretary told him I was hysterically crying and my son could not walk.* On blind faith, he set up the er visit, spinal was done, and by 1 am we were getting ivig.* We have had a dx of gbs,cidp, gbs, and now finally cidp again.* The quick recovery in between the ivig and the long time between relapses initially perplexed the docs.* It is now a solid dx with monthly loading doses of ivig.* This will go on for a year before we spread them out, then another year and so on, with the ultimate goal of one day overpowering these autoantibodies.* If you ever need any help, or just a shoulder, you can call, I will private message you (top right hand corner of the page) my number.* Has your doc started a regular ivig schedule?* Be patient, once ivig is started and maintained, things get close to normal.* I just found 5 abstracts that I never before read that were very encouraging.* I could send them to you if you like.* Good luck and best wishes on this journey, and wait for others to answer any questions you may have.Dawn Kevies mom

    • April 4, 2008 at 11:51 am

      If you have the energy, there is a web site you can go to for compensation of injury from vaccines. The documentation leading up to the dx needs to have a tight connection between the illness and the vaccine. Just a thought.

      By the way, thank you to your family for giving up so much to serve our country.


    • Anonymous
      April 4, 2008 at 12:53 pm

      She’s never received any treatment?

      My daughter was 4 when dx’d with CIDP. It’s a long hard road but it does get easier.

      I’m in a hurry right now but I’ll write more later.