Sunday, October 30, 2011

If it's not one thing, it's 20 others.

I blame myself for J's health. There is no denying that she got my bad genes. Obviously, there is nothing that I can do about it. I did everything right during my pregnancy but she still has JA and uveitis.

J went to a new PT on Friday. This one has worked with JRA kids for years. She worked at CHLA and worked very close with the rheumatology department there. I have put all my faith in Rose. She did things none of the other therapists did. She measures J's hips, knees, checked her back for scoliosis, which also runs in my family but so far J looks good-- WOOHOO!

After all this measuring I find out J's hips are a mess. She guards her knees which has tweaked her hips. She actually has contractures in her hips just like she had her in knee when she was first diagnosed. She still kinda does but it's not nearly as bad as it was. It's going to take a while to fix this but we will do our best to get J where she should be. J has lost almost all range of motion on her ankles and her hamstrings are really tight. All this explains why her hip hurts and why her back has started to bother her more in the last month. We haven't even assessed her upper body yet.

For now J has instructions to A) lay on her tummy for 30 minutes EVERY DAY with her toes hanging off the bed. I am to keep her legs parallel and make sure she doesn't rotate them out. Her hip bones are to be flat for the entire 30 minutes. B) the "runners stretch." Basically she will lean against the wall, one leg in front of the other, knees bent and feet parallel. It doesn't matter how close she is to the wall as long as she can keep her feet parallel. C) Hip flexor stretching. I get to make sure she doesn't rotate her hips and legs out. And D) this is the worst-- no more "pretty" shoes. No more flip flops, no more flats, no more bling. If you know J you know she LIVES for shoes. There was talk about getting her some arch supports and of we do I can see if she would be allowed to wear her other shoes once in a while. But for now it's a good pair of Nike cross trainers. If this doesn't help then I don't know what we're going to do.

We have orders for hip xrays next time we go see Dr. G. I have suspected she has arthritis in her hips for a long time but after seeing the new PT I'm wondering if it's everything else making her hips hurt. Either way it's related to the arthritis.

I know it's not my fault but I passed on my mess to her. I will do my best to fix her and try to take away the pain that she denies she has. Kids who are young when diagnosed with JA often say they don't hurt or they down play it. It's routine for them. No child should live in pain, EVER. I found out that J should have been going to PT on and off for the last 7 years. The reason she is so tight and has the  contractures now is because she did not get the therapy she needed. I should have pushed but I didn't. And look where we are now.

If you are a parent of a child with juvenile rheumatoid/idiopathic arthritis, ask about PT. Follow your gut and question your doc. It could save your child a lot of trouble later on in life. 

Sunday, October 23, 2011

Part 3-- The Infections

So, in my last post I mentioned we took the kids to the Science Center. Being in a public place like that is ASKING for an infection for people like J and I. And an infection did I get. Within a few days I was sick. So sick I was sleeping 16-18 hours a day. I had no idea what was wrong. I assumed it was the chronic EBV, epstein barr virus, and assumed I was in for a few weeks/months of being miserable. On Saturday 10/8 I was so bad that Rick kept taking my BP every 2 hours or so and it kept getting lower and lower. Finally he said enough and we were off to urgent care. IV fluids, blood work, xrays, a dose of toradol, an amazing NSAID might I add, and my pain was down to a 2. I didn't realize I was in that much pain until after I got the toradol. I was offered morphine but declined. Anyway, I guess my labs were OK but the doc asked one question that kinda threw us for a loop. He asked if I had recently come off steroids. Why yes, in July. Why? I was going into adrenal shock. I immediately got 2 doses of IV Solu-Medrol and was instructed to start prednisone again. Xrays showed I was also at the beginnings of a sinus infection. I needed to contact my rheumy ASAP. I had a neuro appt on 10/10 for the seizures and he made the appt for me with my rheum. On Tuesday 10/11, I got a call that radiology reviewed my xrays and I had pneumonia. 

It's been 2 weeks and I feel so much better. I can function again. I remember what I did that day. I'm not 100% but my 100% is probably different then a healthy persons 100%. I don't need to nap but I do need to rest through out the day and I need to be in bed at a decent time. If not, I suffer the next day. 

I have an infusion on today and I'm hoping I'm healthy enough to not relapse. That's my biggest fear right now. You don't realize how fast things can go downhill until it happens. I don't want the kids to see me like I've been over the last 5 weeks. It scares them to see me so sick and seizing. 

Oh, and we found out the cause of my seizures. My pain med, tramadol, AKA ultram. Tramadol can lower your seizure threshold and after 3 years we now know that is what causes my "episodes." So, no more pain meds for me. My rheumy doesn't like to give stuff out so I'm stuck with naproxen. If the pain gets really bad, and I'm hoping with my upped Remicade dose and increased frequency I won't have any, I can go to urgent care, the ER or call my rheum. 

That's where I'm at right now. I'm a whole lot better then I was a month ago.

The roller coaster known as ______________.

Everyone can fill in that blank. For us, it's autoimmune arthritis-- juvenile arthritis AND adult. Oh, uveitis and a few other AI diseases as well.

What people see when they look at Jordan and I are a healthy mom and daughter. They don't know the medications we need to take in order to LOOK healthy. Jordan and I are both on a biologic medication that is infused via IV anywhere from every 4 to 8 weeks. Right now Jordan is at 4 weeks and I am at 6. This particular medication causes our immune system to suppress which leaves us susceptible to infections.

Let me go back to my last post, Wednesday night part 1, the good part. I never did get back to the rest of what happened that night. See, I suffer from focal/pseudo seizures, depending on what doctor you are talking to. While we were waiting for our car after the Kings game my leg began to jerk. Withing 5 minutes I was holding on to Rick begging him to not let go of me because I knew I would fall. I don't know what triggered the episode but it got bad. We get out car and within minutes I'm seizing. Like an idiot, I didn't have my meds. Our goal was to get home. I seized the entire way which was about 1 hour. If I was an epileptic Rick would have called 911 or we would have went to the nearest hospital but there isn't much the ER will do for me.

We finally get home, I'm still seizing and Rick can't get me out of the car. There is no way I can walk so off to the ER we go. While at the ER not once but TWICE I was called a liar and Rick was told I was faking. This is why I hate the ER when I have these episodes. ER staff typically only see epileptic seizures. They don't see what happens to me. I won't go into what all happened, but in the end I got the med I needed and after a few hours I was home. 

This sets me up for who knows what over the next few weeks. I'm on this med that makes me loopy. I don't remember what happened for a good 2 weeks. I function but I have very little memory of what went on. We took the kids to the California Science Center on Monday, 10/3. It's one of their very favorite places. Best part, it's local and pretty much free. You make a donation and you're in. Too bad I don't remember most of the day. I know we had a good time and I know we went to dinner after. Unfortunately, looking back at the photos I remember a lot less then I thought.

J and Matty standing in front of one of the Apollo Capsules

Our 2011 family photo

My favorite photo of the day.
Me and my boy.

Part 3 to come. I know you can't wait ; )