Peaks and valleys. Ups and downs. For most of us, for better or worse, life has a series of peaks and valleys. A rhythm of struggles and triumphs that we learn to cope with or embrace. Moments that we learn to accept and others that we rejoice in and celebrate. It has been 4 months since my last post, and at that point I gave a basic recap of Chloe's situation from her diagnosis with EoE through some serious valleys and back to what seemed like a return to a little bit of a peak. I haven't sat down to continue the updates since then not because I haven't had news or projects or recipes to offer, but because as much as I have needed to write I haven't been able to squeeze a single spare second of time out to do so. I have 3 drafts started with patterns and tutorials and 2 with new recipes, but looming larger than any of those is Chloe. She is getting really sick. Again. And this time I really have no idea what we will find.I know that many EOS kids have a tougher time fighting off routine illness and can require a little extra time to bounce back. And Chloe has had her share of that recently. But she has also had another extended episode of being generally unwell. This is at least the 3rd significant episode of this kind that we have seen with her, and each seems to be worse than the last. She was ill this way shortly before her hospitalization this summer, and it is likely a large part of what landed her in the hospital that time. People develop fungal infections all the time. They don't spend a week hospitalized and 2 months on a feeding tube as a result. It stands to reason that for her, that infection was the straw that broke the camel's back. She crashed so hard because she was so depleted before the infection started. We thought at the time that this was due to the struggle to control the eosinophilic disease, and that prior episodes of the same malaise were due to the same thing, which had not yet been diagnosed when we first saw her this way. This time around she is worse off than before and while she has had a small EoE setback, it cannot explain whatever is going on right now.
As of Thanksgiving, Chloe was still having pain with swallowing and she was starting to get generally cranky again. She had another set of biopsies done and an overnight test for reflux. The biopsies were clear which was good since she has been on an altered diet as well as the steroid. The reflux test, called an impedance probe, showed us clearly that she needs an adult dose of PPIs. So we made that change to her medication and took her off of the erythromycin (for the gastric delay) and antihistamine (also an appetite stimulant if you recall) since she is maintaining her weight, and one was causing tummy aches which she doesn't need any help with while the other wasn't really effecting her appetite. Fast forward a few weeks to January 1st, and she reported that she could swallow without pain! She was starting to look pale and her temper wasn't the best, but finally no throat, chest and stomach pain! 3 weeks later, we stopped the steroid to see if the diet changes were enough. They weren't. The throat and chest pain returned, so she is back on the steroid again for now. This I can live with. She also managed to have a the flu not once but twice AND strep throat twice, all in the last couple of months. This I can also live with. However, through all of these ups and down in November, December, January and February she has remained generally short tempered and very fatigued. Her headaches, both migraine and regular, have gradually increased to the point of being a daily problem. On good days, Chloe can stay awake until 5pm before she crashes for the night. On bad days, she takes as many as 3 naps and goes to bed at 6:30. Some days she gets up and plays, even runs around in the yard for a little while, and other days she never gets off the couch except to use the bathroom. The most recent symptom is a gradual development of and increase in joint pain. First her legs hurt. She came down with the flu which of course can make you achy, however she could barely walk some days and was asking to be carried to the bathroom. Perhaps the flu achiness combined with her other joint pain was too much together. Then the flu was gone and she still complained of pain in her knees and hips. Now she also has pain in her elbows and one shoulder. When the doctor asked how she was feeling she just said "Everything hurts." Usually she gets around fine, but if extended walking is necessary, across a parking lot for example, she can't make it without being carried part of the way. Every now and then she has a day when she seems a little clumsy because her knees are so sore. Those days are usually the ones that also require multiple naps. In addition she has been running a low grade temp, right around 100, off and on the entire 4 months, specifically at times when she had no other reason to be febrile.Since all of this has been consistent before, during and after all of her routine viral illnesses, and since we can recognize it as something that we have seen before, we took a trip to the pediatricians office. Chloe cooperated by falling asleep in the exam room and looking excessively pale, as well as having a low grade fever and reporting the body and joint pain. He agreed that it is all cause for concern and got started by ordering blood work. Now the results are rolling in and I am hoping to hear from him today as far as what he thinks it all means, and if he has a simple explanation for it or if he needs more testing done or to refer her to a specialist of some kind.
Until then, we will all be keeping our fingers crossed that it is nothing too serious, and I will be working on ironing the kinks out of those tutorials, patterns and recipes. Family, friends, members of the EOS community and other readers alike, I always welcome your questions and comments!
