I’ve been going through all the survey answers (thank you THANK YOU to those who took the time to fill it out!) and have been learning a lot. This survey is really going to help me plan future posts for you all and I’m super excited.
I also have been so humbled by all the kind words you all left for me there. It means more than you know, particularly this week. I love hearing the topics you’d like me to write about, but one person’s answer to this made me tear up. She said she loves to read updates about my daughter.
Thank you, anonymous survey-taker for making me smile and yes, cry a little. Had you written that just the week before, I would happily reported that things are great and she is doing awesome! But unfortunately last week all that changed.
For my new readers, my daughter E, almost four, has an autoimmune disease that causes her body to attack her own joints. It’s called juvenile arthritis and you can read more about her story HERE. I hate that is its called “arthritis.” Arthritis literally means painful inflammation and stiffness in the joints. Arthritis is really a symptom and because most people associate the term arthritis with the type that happens with aging and wear and tear (osteoarthritis), people have no idea that this disease is actually an autoimmune disease. A chronic one with no cure.
E has a mild case. It affects fingers on her right hand and her right knee. But we have fantastic doctors who have worked very hard to get her disease into remission and we were on the right track. Four months of no disease activity!
Then a couple weeks ago we had a busy weekend and we got back and the kids and I were fighting a cold. Thankfully it wasn’t too bad but then the next week E was fighting me telling me she was too tired to go to school because she didn’t feel well. I am usually a toughie and make her go. But for some reason I gave in and let her stay home.
Good thing I did. An intestinal virus hit her that afternoon and lingered a few days. No fever, no other symptoms other than fatigue and grouchiness. So on Friday she was feeling well so we decided to head over to Starbucks for breakfast before heading to school.
Getting her out of the car I noticed it. Red, swollen knuckles.
I grabbed her hand. Looked again and again. I started to freak.
“Ellie, do your fingers hurt?”
“No mom! Stop touching them!”
The tears started. I held them back. I got the kids out of the car and got a better look at her hand.
“What’s shit mom?” OOps. Note-to-self: Your child CAN hear you, stupid.
“Oh I mean shoot. Your fingers are swollen we need to call daddy.”
(See her middle and pinky? Pinky had never swelled before)
So I left him a message and message with our pediatric rheumatologist who called me back shortly after. We decided to up her dose of her meds and hope it gets her back into remission.
So why did this happen? After 4 great months? It was likely the virus she was fighting that triggered what we call a “flare.” Not only that but the change in weather (fall) can also affect things. The combo of the new cold temps (the cold weather can thicken the fluids in the joints, causing more stiffness. Why do you think all the old people more to Florida?).
Unfortunately, we’ve had another change. Up until now, Esella has done pretty well with her meds. She gets a once a week shot of a chemotherapy drug called Methotrexate that helps to suppress her over active immune system. When we first started the drug she would be a little tired and sluggish for a day or two after but she adjusted and was basically symptom free.
Methotrexate is a chemo drug, so it can have the same side effects. Nausea, vomiting, fatigue. The last two shots have made Esella vomit. Once before the shot, once after. In addition all last week (we gave her her shot Friday night) she was E X H A U S T E D. Which equals difficult, crying, attitude, etc.
And of course my husband was away, right? I was in survival mode. Thank goodness my in laws took the kids for several hours on Wednesday so I could breathe.
She seems to be better this weekend. Tired? Yes. But not nearly as bad as last week. Hoping she is adjusting to her new dose and we will be out of this funk!
Life can always be worse and we know that. Most kids we know with JA have more severe cases. Esella was also diagnosed very early which unfortunately, is not the norm for this disease. The rheums were impressed that we were in to see them just 2 weeks after our first doctor visit and just 5 weeks after her symptoms started. They said it can be a year or more for kids to get a diagnosis! Which means the disease can become worse and spread to more and more joints.
The type she has puts her at higher risk for eye problems (can you believe it? JA can attack the eyes!) so we are off to the eye doc this week. And the dentist. Should make for an eventful week! 🙂
Well…it’s Sunday and I think I’ll go play with my little ones. Hope you are having a great weekend!
Katie and E-we love you guys and hope E is back to feeling like herself soon! 🙂
LOVE YOU NICOLE! We need a play date. Our girls need to get together again and so do we 🙂 Miss you!
Jenn Alcorn says
I admire you and your family…I just can’t imagine what it must be like to deal with an ongoing illness affecting my child. You and your sweet girl are in my prayers.
Thank you Jenn. It means more than you know to see your comments about my E. Thank you for supporting us! And thank you for the prayers 🙂
Even though our children’s journeys are different…there are still so many parallels. And I couldn’t help giggling a little at your potty mouth. Whenever I see a seizure I always cuss. I can’t help it. There is just something about a disease attacking my child that brings out my potty mouth. Daddy cusses at the mower. Which is probably why Trevy recently cusses at his bubble mower. 🙂
I agree…I love all the speech tips and ideas…but I also like heart connecting with your personal side.
Darn you Danielle….you’ve got me crying now!! Thank you, thank you thank you. I’m glad I made you giggle. 😉 Thinking back it made me laugh too…which I needed! I love that Tervy is cussing at his bubble mower. What a miracle he is! I LOVE IT! 😀
Not the news I was expecting to see. Let’s all hope and pray that she will adjust to her new dosage and it will bring it back to remission. Thinking of all of you
Thanks Peg. No,not the news we wanted wither but we are thankful that we at least have the resources to help her. Thanks for stopping by, it means a lot!
Thanks Peg. No,not the news we wanted either but we are thankful that we at least have the resources to help her. Thanks for stopping by, it means a lot!
You’re a strong and resourceful woman – you GOT this! Thoughts to you and E
Hey Kristy. Thanks! I don’t feel strong but I just have to be sometimes! Hope that little beauty of yours is well!
Bea, OT says
I’m so sorry to hear about your daughter’s jra. I hope she goes into remission again soon. I suffer from fibromyalgia, another autoimmune disorder, and the change in weather and illness flared things up for me too. Hopefully, she’ll feel better soon.
I really enjoy reading your posts! My son suffered a stroke at birth and is now having some speech delays. Your posts give me great ideas about how to encourage more speech.
I was reading your original post about your daughter and I really connect to that part about working with many different children with a variety of diagnoses but not jra. I felt that way when I realized I had never worked with anyone who suffered a stroke at birth as an OT. Isn’t it interesting how life sometimes turns out?
Bea, OT says
I just realized I’m old school and realize it’s now called ja not jra! Sorry!
Bea, OT recently posted..More than words…
Bea, welcome! I’m sorry to hear about your little one, and sorry to hear about for fibro. I hope it doesn’t flare up too much for you. And as for your son, I hope my site can help you out a little. Please let me know if you need anything. I’m happy to have you here! 🙂
Suzanne Herman says
Hi, I commented once before that I am an “old” SLP with lifelong JA (though my doctors snicker when I say this since I am no longer Juvenile). I have also noticed over the years that illnesses tend to flare up the joint issues. It can occur pre-illness, during, or sometimes after. So when I get achy I usually start expecting one of two things: a weather change or an illness (then I start taking Zicam, gargling, taking more Vitamins… whatever seems to target the current bug going around to try to minimize my illness). I also have joint damage in an ankle due to a high school injury (a “magnet” that draws the arthritis to it) and I generally cannot walk long on vacations before collapsing in pain. I have finally learned to ask my doctor for prednisone to take while I am on vacation (short term doses once per year) and find that it makes a HUGE difference in being able to stay on my feet and enjoy my vacation. Don’t know if these tips may or may not be pertinent to the needs of your little one in the future but just thought I would share them as it took me many years to figure out strategies that work for me in my particular circumstances.
Suzanne thanks so much for your insight 🙂 I’m sorry you have dealt with this so long but thankful for your support!
Katherine Collmer says
Katie, my heart goes out to you and your little one. Yes, maybe there are “worse” things happening to others; but for you, this is the worst case. So, just know, that it’s ok to lean on those who care for you and to let yourself be human:) Please keep up posted!
Katherine THANK YOU. Sometimes it is hard to remember that I am allowed to be human. 🙂 I’ll be sure to keep you all posted!
I agree with the others who have commented here, I love your blog content on speech and language, but I do also love the glimpse into your heart and mommyhood. Bless both your hearts! I also giggled at your potty mouth! Gotta love it when those words slip out! I hope she feels better ASAP!
Trina recently posted..September Happenings
Trina, thank you for your kind words. She does seem to be doing better this week! And yes….I am pretty good about the potty mouth except when these things happen! LOL! 😉 Hope you and your boys are doing wonderful!!
I used to always tell my eye doctors that I was at risk for iritis (and when I was little had to go to a specialist because of that risk). But now they don’t even seem to care. I guess they figure because I haven’t gotten it yet, it is not going to happen(?).
CC recently posted..Conference scheduling disaster. Again.