Tuesday, August 27, 2013

Adventures in Wonderland...

Here is our story of Alice in Wonderland Syndrome. Our real life "trip the rabbit hole".

October 2011 was an eventful month for us, health wise. I had the unpleasant experience of having a bulging disc in my lower back accompanied with an illness that put me in bed for weeks.

In addition to MY health troubles, my daughter Elaine was 6 at the time and she was also sick with the same illness. She got the worst of it, in my opinion. She had a fever of 103 every night for 10 days, then I finally caved and gave her Tylenol. Then her LOW body temperatures every night started. Despite me sleeping with her and having a heating pad on her all night her temperature did not go over 90-91* till morning came and her fever of 103 returned. I was never so thankful for a child to have a fever than those 2 or 3 mornings. Her low temp was considered mild hypothermia!  Hers turned into pneumonia and SHE choose to have 2 antibiotic shots vs. taking oral antibiotics. I like to let my children help direct their health care and learn to trust what their bodies are telling them.

But this story is mostly about my middle son, Collin. He also was sick with this same illness. We were tired all the time, we ran fevers at night. All three of us. Collin however started screaming bloody murder at night. He'd go to lay down and just the act of moving his covers sounded like a freight train was coming through his head. He would say things like, "mom your nose is HUGE!" or "why are you so far away?" When I was inches from his face. His senses were all out of whack, as if he was in Wonderland. The floor was uneven, to him. He lost all sense of time.

I took him to the doctor with no answers, no tests ordered. I think she thought we were making it up. I searched the Internet for some answer to what my son was experiencing. That is where I found Alice in Wonderland Syndrome. It listed TWO known causes. 1. a brain tumor or growth and 2. The Epstein Bar virus (EBV), commonly known as mono.

We returned to the doctor armed with my knowledge of the syndrome and demanded he be tested for EBV. He tested positive, of course. It fell into line with all the symptoms we were all having. Tired, fever, etc.. But the doctor didn't think it could be that, as the kids spleens were not enlarged.

EBV has no treatment, you wait it out. There is treatment for complication such as pneumonia like Elaine was unlucky to get, but not for EBV itself.

Elaine also had a few episodes of Alice in Wonderland Syndrome, but not as severe as Collins. He continued to have episodes almost every night for about 2 weeks, then it tapered off to 3-8 times a month for the next year ish. He's also developed "flapping" like an autistic child would do when he is upset or excited. So, we believe that to be also caused by his EBV.

So, that concludes our story about our trip "down the rabbit hole". It was the most worrisome and scary moments of motherhood for me, to date. Including Corey (my oldest) being diagnosed with a benign tumor in the neck of his right femur. I was irrational myself with illness. I would call my sister telling her I was dying, that we must of all caught something off our calf. Add to it my child having symptoms doctors could not explain, I was frantic!

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