We had an early morning today. On the happier side, we saw two hot air balloons on our way to the hospital! It was a really neat experience for the kids! By the time we got to the interstate, we had come fairly close to one of them, certainly closer than they had ever come before to one.
I'll start with Emily because our month has been difficult with her. She had gotten a sinus infection just before we went for her meds two weeks ago. We started her on antibiotics only a day or two before. I wasn't overly worried because she was receiving her IViG that week. Usually that would boost her immune system up enough to kick an infection. I was surprised to see that her IgG count (immune system) was up around 700- normal. Hmmm... I thought that surely with a good IgG and added IViG, she would be just fine pretty quickly. That was a Thursday and Friday hospital visit. We also finally had the hand MRI done during that stay, though only for one hand.
By Monday she felt worse. We went back to her pediatrician, who increased her Augmentin from 1.5 teaspoons to 2. She also insisted that we give Emily Xopenex in her breathing chamber every six hours. The very next day her pedi called me on my cell phone, from her cell phone, on her day off to make sure Em was doing ok. She informed me then that her breathing was so bad that she considered sending us to the ER, but opted instead to check up on us, and ask us to start using the nebulizer. I had lent that to my parents, so I borrowed it back from them. Em was seen that Wednesday. Her breathing sounded much better after 4 rounds of albuterol in the nebulizer. Phew! Not out of the woods yet, we were asked to bring her in on Friday for a CT scan of her sinuses. We couldn't get a Friday appointment, but we were able to have them done on Saturday morning. I am so glad that we did! By this Wednesday, since she still wasn't feeling any better, I called our rheumies, wondering what we should do about her infusion the next day? I also called our pediatrician and had them fax the CT results to our rheumies. I had six calls to and from the hospital, between the nurses from the infusion room, to the RN that helps keep the rheumies on the same page.
The end result for this was an infusion of IV antibiotics before her Actemra. The RN had at one point called me and said that her head was still so full that she didn't feel comfortable telling us to come in, but the doctor's ordering the antibiotic changed the game. She also said that apparently, the roots from Emily's molars are growing into the maxilliary sinuses. I found that to be rather interesting. She had a CT of her sinuses a few months ago, and nothing was said about that then. On my list of questions for next time I will have to ask if this is possibly a result of the stunted growth from her steroids. I am assuming that her face and jaw are not growing as well as they should be, so this would make sense. Thinking about the advice of a friend, I believe we will ask them to refer us to an endocrinologist. (Thanks, KPM!) I hope to have more answers on Monday when we go back to the hospital to see the ENT. I have no clue what the answer will be to the molars getting into her sinuses. As my husband said, that explains the pain that she has had in her jaw lately. On the bright side, she can now feel the Actemra working. She was wiped out, but she felt better last night.
The other thing with her is the MRI of her hands. I was extremely happy to see that there is no joint deterioration, but there is tenosynovitis. At least now we know why they hurt so badly so much of the time. We received her TENS unit this week. We will have to use this to help that.
Zach's appointment was much less complicated. The end result with him is, while there continues to be signs of progression, there is not enough cause to change medicines. I am happy with this. I really do not want to try Humira, mostly because of the burn. He is experiencing swelling in his right knee and left ankle, but not really any pain. Occasionally his knee will hurt, but his ankles are worse. He also has a spot in his back, but it doesn't bother him often. However, they are not bad enough yet, which is fine with me!!! His psoriasis isn't so bad either. He has a spot on both elbows, and his head is starting a bit, but I also held his meds this week because he has been sick, too. I am glad that one of them is stable.
The funny thing about having two sick kids is that, since Zach is so much more well than Emily, it is hard sometimes to remember that he is sick, too! It would be lovely if he would hit remission. We will never lose hope.
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Friday, February 22, 2013
Appointment for Zach, and test results for Em.
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I am happy to hear about no deterioration in her hands and that her breathing is somewhat under control. Praying hard for Em. Glad the docs are getting things aggressively and doing things right. As far as Zach goes,I continue to pray for him too. I hope no Humira in his future too. Praying for remission for both of your babies.ReplyDelete
Danielle, your family is always in my thoughts and prayers. Keep hope strong for both yur kiddos. Miss you.ReplyDelete
Humira hurts, no doubt, but it was a miracle for G. Best thing actually, and helps with the eyes too. Im sorry you guys are still dealing with so much, but happy that you may be seeing endocrine!ReplyDelete