A Step in the Right Direction

I think we took a step forward today. We went to see our family doctor and discuss the specialist’s findings. His office is going to see if they can hunt for a Pediatric Neurologist and Rheumatologist,  and hopefully find one closer to home with less of a wait time for an appointment. They’re suppose to call me back tomorrow and let me know what they find out. So on this issue I’m waiting with prayerful hope.

In the mean time he was willing to prescribe medication to begin treating the fibromyalgia. It feels a little odd being so happy to have a doctor prescribe medicine for my child. It’s contrary to how things should be, but also a part of the new reality we’re living in. He prescribed one of the new fibromyalgia drugs they’ve been advertising on TV. He wants Miss B to try it for two weeks and see if it provides any relief. I am praying that the medicine is effective, and we can see measurable results quickly.

The specialist last week also told us that many children with JPFS also have ADD, and if the ADD is treated, it can possibly provide relief for some of the JPFS symptoms. The doctor today also agreed to have Miss B evaluated to see whether or not she has ADD. School has been tough this year for Miss B. Not only the physical exertion and fatigue, but it has also affected her academics.

When adults talk about fibromyalgia they often refer to the muscle pain or the fatigue. Another symptom that is not discussed as often is something that is referred to by most fibromyalgia patients as “fibro fog.” It is described as having difficulty concentrating or sometimes described as your thoughts being “fuzzy.” As an adult it can be annoying, but something you cope with. For example, there was a week when I couldn’t remember my own phone number. I knew I should know it, but didn’t. I knew I could open my checkbook and locate it, but I shouldn’t have to. It seems like a silly little thing, however it was frustrating that I couldn’t clearly recall it in my mind. 

Now imagine being a student in class. You are already battling fatigue and are in pain because you have to sit still for 45 to 60 minutes at a time. The longer you sit, the stiffer you become, the more your muscles ache, not to mention the migraine headache which is exacerbated by the florescent lights. Then on top of that you are struggling to keep your thoughts focused on the words coming from your teacher’s mouth, but it’s hard. Your mind’s filing system just went on the fritz and your teacher’s looking at you expectantly for the answer to the question she just asked. You can’t retrieve the information she wants even though you know you should know the answer. That is want fibro fog can look like for a child. It’s unseen and unexplainable to a teacher because the child doesn’t understand it themselves.

When I left the doctors office today I felt hopeful. Hopeful that Miss B is going to get the help and relief she needs. Hopeful that the new medicine will be effective.

I know Miss B doesn’t understand it all. She hates going to all the doctors. She just wants her life back, her healthy life. When I told her we had an appointment today, she let out a frustrated growl. She said, “Can’t I go a week and a half without having to go to a doctor?” When I pointed out that it had been a week and half, she said then how about two and half weeks. After going to so many appointments and not finding any relief, I think she has lost faith in doctors (not that she’s ever really liked doctors in the first place). I think she thinks their main goal in life is just to shuffle you around from one doctor to the next saying they’ll help but it never actually happening. I keep telling her (hoping and wanting to believe its true) that this appointment will be different; today they’re going to take action. Well, today was different and today my hope is stronger than it was a day ago.

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