Overall, Zach is still doing pretty well. We have noticed that he simply cannot handle being on his feet for long before his heels and ankles begin to hurt. It isn't the end of the world, but it isn't fair to him when we go places, like Lego Land with our favorite arthritis families! It was so wonderful to see so many of our extended family members, as well as meet a few whom I have been typing to for years! It was tough on Zach, though. I never think to get him a wheelchair. We should have. Next time.
I'm not really certain where to start with Emily. The easiest part is Actemra. The first three doses seemed to give so much promise; they all bought her about eight mostly pain-free days. She has had five doses now, I think, but the last one only worked for about two days. We have spoken to our rheumy group about that, but for the moment they want to see if it will kick in. If it does not, I am not sure what our next step will be. She consistently hurts in her knees, hips, back, ankle, and shoulders. This is the worst that she has felt in quite some time. She is moving around less and less, because it is so difficult and her balance is off.
The other problem with her right now is the continuous headache. We have been on the runaround, which I am putting a halt to. I had mentioned it to our rheumy group the past month or two, but at the time it wasn't significant. More recently, she started pressing the issue more, so we have delved deeper. Our pediatrician had sent her for a CT of her sinuses. The CT came back that she was still congested, but also it claimed that her molar roots were spreading into her maxillary sinuses. Next step was the dentist. We had a panoramic done, which our dentist does not think looks as though the roots are an issue. He referred us to an oral surgeon. All of that is lovely and all, but I still did not have a reason, so we decided to see our pediatrician. She concluded that it is likely her TMJ joints in her jaw- the only joints that did not "seem" to be affected prior to this.
She also popped out here a bit ago to tell me that her chest is hurting again. We have established that it hurts when she breathes, so tomorrow we will dig out our nebulizer again. I will have to add that to the list of things that we discuss on Monday at the hospital. The wonderful thing about having the MRI locally is that we should have answers to our questions about her head on Monday- at least some! Hopefully they will be able to listen to her chest then, also. She is already on Symbicort and Singulair daily. I would like to add Spirulina, the natural blue/green algae. I have to make sure that it will not interact with her other meds.
Please keep us in your prayers, if you would. This has been a tough time. She doesn't want to do anything or go anywhere. I really feel that having our puppy is such a blessing to her. He has been so great lately, and he really helps to take her mind off of things, or at least he gives her something good to focus on.
One last thing: Zachary will be ten on Sunday! I am not sure where the time went, but he is so sweet, so smart, so funny and loving. I am so thrilled that he is my boy.
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Savannah has pain in her heels and ankles, too...mostly along the achilles. I got her an Convaid EZ Rider about a year ago because she just couldn't walk anywhere or even be on her feet too long without being in great pain. I keep it in the trunk of my car for when we have long shopping trips. It really helps and has been such a blessing!
Thanks, Jenny. My biggest challenge with a chair for Zach is... how to push two simultaneously? I have been trying to figure this out, but I am at a loss. I am thinking about trying to get him something that he can push himself, but that once again leaves us with a problem- his hands are hit hard. We shall see, I guess.Delete
I am glad that em is communicating to you exactly how she feels so that you can most effectively advocate for her. And I hope that you can get simple answers with solutions to help her feel better. I am so sad to hear that actemra is not as helpful anymore. Hope that turns around. And Zach is always in my thoughts and prayers too along with strength for you, Kevin and Ashley. Your family is such an inspiration and an example of true love and the power love can have. Hope Zach has an amazing birthdayReplyDelete
Much love to you all! Zach had a pretty good day. They were supposed to go camping, so I went to work. They ended up staying home, but he is happy hanging at home, so it was a good day for him. :) He's so silly.Delete
I hope you find clear answers for the headaches. Our dtr had "jaw headaches" and we finally did an MRI after she started having ear pain caused by arthritis in her jaw. She has significant damage but TMJ injections have been a help. The headaches are wearing. We are in the same boat with you guys in that pretty much all of her joints are impacted, she has crazy raynauds (uses nitroglycerin patches for that), and is officially dx'd with lupus along with arthritis and myositis. After we went through the injectible meds, she tried orencia and actemra. Currently she is using Rituxan and getting multiple sedated injections. 28 joints in the last round. I hope you find a med that works wonders!ReplyDelete
I would love to chat with you sometime. It sounds like our girl's are somewhat similar, which is relatively rare in the rheumatic world. We had tried nitro cream for the Raynaud's, but after she got frostbite at school, we put her on a calcium channel blocker, Procardia. Currently Em is also on Rituxan and Actemra, along with IViG to boost her back up. She did really well for a long time on Remicade and Rituxan. Orencia didn't work for her at all. She has only had 5 doses of Actemra, so we are hoping it will kick in soon. We still stand with the TMJ's being the only joints not affected, and no uveitis. That is it, though.Delete
I hope that y'all find a med that works very well, too! Thank you for your encouragement.