Before I talk about our day and the general health of my family, I would like to ask for prayers for all of our juvenile arthritis friends. Some are suffering from severe systemic affects of the disease, some are suffering from psychological affects, and some from related conditions (because dontcha know that having one autoimmune condition can open up a whole new can of worms). One friend who is only around Emily's age is having his colon removed. He's only between 10-12. We have friends who suffer from more autoimmune diseases than you have fingers on your hands. Painful GI related diseases, and of course other systemic diseases. The worst that we have seen is Dermatomyositis, which is horrible, but I know that some suffer more than what we've seen.
Emily asked me yesterday what would have happened if she didn't get treated for her DM, if they didn't know what it was or if we hadn't changed doctors. I had to explain to her that not only can it affect your internal organs but it can also affect swallowing and breathing. She did have some esophogeal dysphasia (weakened throat muscles). If she wasn't treated shortly after she was, she likely would have required a breathing tube until the inflammation was under control and the muscle tissue was rebuilt. This is what DM kids face, and while there aren't a few million of them, there are too many kids suffering. Please pray for all children with autoimmune diseases. They are a terrible way to have to live.
We are very blessed that, while Emily has her share of challenges and hard times, she isn't suffering the way that many kids are right now. Not to say that she has it easy- she does not. But she's not doubled over in pain 24/7 or losing blood constantly, she can eat and sleep and walk. That's a pretty good day right there. We continue to deal with the chronic sinus infections. She has another few days of antibiotics. Our hope is that this round of IViG will kick in and boost her immune system up more. Her Igg counts on her labs from yesterday looked pretty good, but next month when she gets her Rituxan next (along with Remicade & IViG all in one day, likely overnight) they will drop so it's important to continue to boost her Igg. This is how it works a bit: Remicade blocks anti-TNF alpha, Rituxan wipes out the 'B' cells. The combination wipe out the immune system. IViG builds the immune system back up. Things like the particular form of sinus infection that she has are caused by the immune system being too low. If we can boost it enough she may shake this thing yet. They ran the IViG over 4 hours again so I'm a bit worried, but it's a different dose & a different brand. Apparently they use one brand for outpatient & one for inpatient. Outpatient's get the brand that causes fewer side effects. Here's hoping. If she's going to react then it should happen between 3-5 today.
Otherwise she looks good. She's had some back, ankle, knee, shoulder and toe pain, but they are not visibly swollen or red. We discussed her Prednisone taper and the scare that we had, and we are now working on going from 1.25mls to 1ml. (3mgs).
Camp called us today to talk about our applications. They said that they won't release who is accepted until May 1st but I don't think they called me last year, the only year that Emily didn't get in. They confirmed that they received all of our paperwork from us, our pedi & our rheumy's, so hopefully they will both be accepted! As much as we'll miss them we know how good it is for them. I love them so much my heart melts! And that's about it for now. I have to steal a quick nap. The day after hospital wipes us both out. Good day to ya :)
*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!
Tuesday, March 27, 2012
March doctor & IV appointment
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