Any mother of multiple children will tell you that having one child sick causes a dread in the pit of your stomach because it is almost inevitable that the sick child will be healing just as the next child is coming down with what the first one had. From there it is a marathon for Dr. Mom 24/7 until the domino effect has reached the last one standing. For special needs parents there is an added insanity to this race.
Much like a new mom bringing home her first baby you are on high alert for foreign and added germs. You wash your hands and everyone else's until you have to send someone to the store for more soap! Clorox wipes, bleach, vinegar, and baking soda (whichever your weapon of choice may be) is at the ready. When you are not checking foreheads, pushing fluids, or making soups you are cleaning sheets, carpets, "puke pans" or throwing away emesis bags.
Yesterday Aidan woke up with a fat lip. No big deal right? Unfortunately no. He has had random allergic reactions, in the form of hives and wheezing, over the past two months. There has never been a rhyme or reason to it and I have yet to figure out a culprit. Unfortunately, the fat lip that was big enough to look like a duck bill was enough to make that gut feeling or "mom instinct" wave the flag and head to the doctor.
Going to the doctor is enough to cause a full-blown panic attack. Fortunately, our pediatrician is someone that I am proud to call a friend. I love to visit with her and I trust her immensely. The problem is not her, nor her office, nor the realization that diagnoses come from doctors offices and hospitals. The cause for alarm comes from all of the germs that we will interact with on our way to see her. Despite their very clean office, there are always germs lurking. And despite our best efforts we almost always bring some souvenir home with us.
Some of you may be saying "so what, it makes your immune system stronger." And several years ago I would be saying the same thing. In fact, when my children were very little I did not separate the ones who were sick with chicken pox because I wanted it to be done and over with while they were little and better able to handle it. But now, sickness and germs are treated like the plague.
You see, many people are susceptible to seizures while they are sick and running a fever. These seizures do not make you epileptic. They are called febrile seizures and are often times non-epileptic febrile seizures. So as you can imagine, a little girl who already has a handful to hundreds of seizures every day, sickness only makes life that much more complicated and dangerous. Add to that the not-so-simple fact that Avagrace has trouble regulating her body temperature and we can get into serious trouble very quickly.
From the time Avagrace was born she was very finicky about her body temperature. She was like Goldilocks and liked everything "just right." As a baby I remember her sweating. She would sweat in the car-seat, she would sweat if I had her in too many layers, and she would sweat for no apparent reason. Then she would be too cold and literally shiver. Fortunately her internal temperature has never faltered. She has never been hypothermic and she has only had an actual fever a handful of times in her 9 years of life. Unfortunately, a few years ago she stopped sweating everywhere except her head and even there it is a very small amount. Still, every time she gets overheated her seizures increase. Then after she has a seizure she is so cold all she wants to do is cuddle under a mountain of blankets. We just have to be sure to time the removal of said blankets in enough time so that she doesn't get overheated again.
In the summer she wears a cooling vest. It is literally a cotton vest that has pockets to hold ice packs. And in the winter she wears several layers so that she can take off and put on as needed. Cardigans are her favorite.
Aside from her temperature issues, germs are especially hard to fight. Her body is already use to high doses of strong medications that are in fact to high for adults like me. So her body does not always cooperate with antibiotics. Just last month she had to have two rounds of antibiotics just to battle a UTI. And every time her immune system is battling some germ, her seizures are able to break through much easier and her seizure stats multiply very quickly. The two and a half days of her UTI Avagrace had over 300 seizures.
We currently have two kids, my husband, and I who have sore throats, headaches, and nausea. And I am trying to sanitize everything as well as keep the kids at a reasonable distance from each other so that hopefully Avagrace will not catch whatever this is. So today for epilepsy awareness I wanted to share that a simple cold or UTI could in fact steal my daughters life. It isn't something that you are warned about when you first hear the diagnosis. It isn't even anything that you will typically read on awareness websites. Yet every parent of a child with intractable epilepsy will tell you to say no to germ sharing!
It makes me think twice before I run to the store to get that one thing that I can't live without when I am fighting 'just a cold'. I know full well that it is not always possible to stay at home. My husband does deploy and I have five kids. But if you have the option to quarantine your germs I am sure that there are plenty of families who are battling rare disorders, cancers, and the like that will thank you! And I know that those families, like myself, are also thankful for things like antibacterial wipes and hand sanitizers that I can carry with me to help fight germs when a sink and soap are unavailable.