You may remember when I wrote about my 9 year old having an episode of alopecia areata last summer. It was heart-breaking and gut-wrenching for me. The spot filled back in after the treatment the pediatric dermatologist gave us to use and I prayed and hoped that it would be the end of it, that it was just a one-time thing.
And that, combined with our family history of autoimmune disease, along with my sensitivity to being told “nothing is wrong with you” when you know that “something absolutely is wrong with you” led me to write this email to her teacher a few minutes ago:
How was Shana today?
She said she wasn’t feeling well this morning (after I’d gone to work of course) and her bonus-dad didn’t think she was bad so we both encouraged her to go to school. It seems that the last two years she’s had quite a few mornings where she wakes up and doesn’t feel well yet when she stays home then she seems fine within a short amount of time and the whole day I”m thinking “she could’ve gone to school!” I hate to not believe her (or even make it seem to her as though I don’t believe her) because I absolutely do believe when she says she doesn’t feel well, but I don’t want her to miss school unnecessarily (and know that she’s not at all the kind of kid that would do it to “skip school!”)
The concern that I have is that she is now the 4th generation of women in our family (at least – those are the ones we know of – are there are several in each generation with our issues) that have various autoimmune diseases. I’ve struggled a lot the last few years with my own AI disease, and this past May Shana had her first episode of alopecia areata (complete loss of hair in a spot that is due to autoimmune disease process – the immune system essentially shuts off the follicles – the first time it was about a quarter). It had not even begun to grow back yet when she finally got to the pediatric dermatologist that August. With the medication she was given it did grow back in and fill in. I prayed that it would be a single “fluke” occurrence with her and that it wasn’t the beginning of a life of autoimmune issues, but last week when getting her hair cut our stylist found another spot. This one is smaller – about the size of a dime – but it’s definitely there and definitely a recurrence of the process within less a year.
Long story (not really) short, she already shows signs of autoimmune disease and I know that many, many other AI disease begin as “I don’t feel well” – that’s certainly how mine began – with me saying that I wasn’t right yet for years I was told by doctors and those around me that there was nothing wrong. The problem with these diseases is that they’re often not diagnosed until 80% or more of the effected organ is damaged already – they’re so hard to detect in the early stages because they’re often invisible. Well she already has one that IS visible – the alopecia, and with many people with AI when you have one specific AI disease, there are often others that come join party.
So I think I’m struggling a little more than most parents with the frequent “I don’t feel well.” She’s not the kind of kid to make things up or use it as a way to get out of things so I believe that she doesn’t feel well, yet she doesn’t have any “normal” symptoms – no fever, cough, throwing up, etc.
Today was the first day we’ve ever “pushed” her to go to school when she complained of in the morning of “not feeling well” and I’ve had a hard time all day with the decision – I just don’t want to be missing signs of invisible processes, but I also don’t want her to miss unnecessarily. I told her to let you know if once she got there she needed to go back home…I was hoping she’d get there and after a bit of time bounce back into her normal self.
So basically, can you just let me know if she ever seems to be “off” from how she normally is – today in particular – so that I can figure out if this is something I should pursue with her doctor or not.Thank you a ton for all you do for my girl! 🙂
And it was made even worse by the fact that I wasn’t there (I was already at work – my husband was home and did check her for fever and visible signs of illness – and even up to bedtime last night she was bouncing around and eating like crazy – I even remarked to her about how hungry she must be because she kept eating!) Oh, and add in that she texted me a picture of sad face crying as proof that she was sick.
I think any parent would struggle with this “do I let her stay home or not” thing – but I think I’m having an especially difficult time with it when I combine my history of illness (along with the many, many stories of people that suffered, even in childhood, and weren’t “heard” or taken seriously) with the fact that she already is showing autoimmune activity.