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Oct 12, 2016
Our little dude, Luke, is almost 7 years old and he's a witty, joyful, intelligent child. He is extremely curious, active and friendly.
Unfortunately, Luke inherited a trifecta of illnesses that have been impacting his quality of life more and more as he gets older. He has asthma, severe allergies and extreme eczema. For the first few years of his life, all of these issues were relatively easy to control. Sadly it seems that every year at least one issue becomes worse and affects his daily life. [And mine, but that's OK with me, though I wish he were just able to live a totally "normal" childhood.
Luke's allergies and eczema have been so bad over the last few months that these seemingly "mild" illnesses have become a major part of his life. At the end of his past school year, we ended up having to home school him because his eczema and allergies were making it very difficult to work and he also had to miss quite a bit of school either for doctor's appointments or simply due to the effects of his problems.
Over the summer, he seemed to be doing a bit better so we re-enrolled him in public school. Brandon and I both believe that the school experience is very important and we want him to have that. However, about 6 weeks into his first grade year, we ended up going back to home schooling . He was constantly irritated by his sore skin and the medications he has to take for itching are quite sedating-- and when Luke is tired he becomes very moody. He also was unable to play outside at recess with friends because the heat severely exacerbated his skin irritation. Of course, this was problematic in school, coupled with the fact that he could not refrain from scratching himself to the point of bleeding. He also has contracted staph twice due to the open wounds he causes.
In case you're concerned that we don't do enough to control his symptoms, I'll share our usual daily routine... Once per day he receives Flonase and Zyrtec. He takes Hydroxizine on an ass needed basis every 4-6 hours. If that hasn't helped the itching he will receive a dose of Benadryl. Occasionally he is given a short course of oral steroids.
At least 3 times per day. more if needed, I spend about 45 minutes to an hour applying topical meds to his skin. First, any broken skin is treated with ether Mupirocin or Bacitracin, depending on what appears to be working best. Then, I apply either Triamcinolone, Desonide or Mometasone to any areas that are affected [avoiding his groin, lymph nodes and face]. I apply Protopic to his face as needed.
Then. I cover him in extremely hydrating cream [the tub of thick, thick Eucerin or Vaniply. If he remains itchy, I also apply hydrocortizone ointment. Finally, all of this is then "insulated" in a layer of either Aquaphor, Vaseline or Lansinoh [yep, the breastfeeding cream.
Finally, he is dressed in a long-sleeved shirt and pants. When it's at its worst, he will also wear the Eczema specialty clothing [one is like a "shrug" that fits like a small jacket [made of very soft cotton] that covers his hands like mittens. Other items we use are little tube-like pieces that cover the elbow and knee creases which tend to be the most severely affected.
Then when we're not completing this routing, we work on his school work and/or I attempt to keep up with the housework. So, Luke's illnesses may be perceived as minor-- they do require lots of time and patience!
Just in case your curious, Luke is allergic to the following and this is NOT a complete list:
Peanuts Eggs Milk Soy Wheat Penicillin Rocephin Bactrim Cockroaches Cats Dogs Several types of grass Several types of trees Many, many types of pollen
I know there are many more but I can't recall off the top of my head....
We're currently trying to raise enough funds to at least purchase Luke's Epi-Pen, if you're so inclined, you can donate by clicking the link to his GoFundMe page here: