Bad Days, Ice cream, and Brotherly Love!

   I think we're headed back to some bad days in the near future.   Molly has been clingy and crabby. I have a good feeling that we're headed to some bad days, maybe a fever episode. She doesn't want to play, she only wants to be held and cuddled (unless she's jumping on the sofa...which she's not allowed to do).  She's been having a hard time sleeping. She hasn't been eating much.  These are all things I've come to recognize happen just before a fever episode.  She should be due to have an episode in about week, so we'll wait and see.  In the meantime, I'll pray that she doesn't have an episode and if she does that it will be mild and easily controlled.  I'm also praying that if she does have a fever episode it doesn't cause a setback or additional joints to become inflamed. So, I ask that you pray for us.   She's been favoring her right leg again, her right knee was the first joint that was affected and what started this whole snowball.  That's what I feel like the last 6 weeks or so have been, a snowball that started small and started rolling down a mountain. 
   On another note, we now have successfully given 2 Methotrexate injections at home. Well....I did leave a bruise both times.  :(   I feel really bad about it, but I think I hesitated each time and I think she moved some.  Let me say...it's really hard to give an injection to a wiggly almost 19 month old.  My husband holds her on his lap while I give her injection, I feel like we need 2 more people to hold her down, LOL.  I have even more respect for all of the nurses out there who do this on a daily basis, they truly are awesome!  I am very thankful she gets over it pretty quickly and still wants me to comfort her, so she doesn't hate me. We haven't seen any side effects from it yet, but I assume as it builds up in her system over the next few months that we may see some of them. She also takes a folic acid tablet each day that she doesn't get the injection.  The whole family enjoys this because it means after dinner we all get ice cream! We have to crush the tablet and feed it to her on some type of food. We choose ice cream because who doesn't love ice cream!!  Our other 2 kids are loving it and so is Molly.  I have to tell a quick story about Will.  He truly is the best big brother and I believe God had picked him to be Molly's big brother, he is so caring and sweet.  Tonight after dinner we got the ice cream ready and put her special "sprinkles" on it, I started to feed it to her and she said "no, no, no".  I tried to let her feed it to herself and she said "no, no,no".   We're definitely headed towards the terrible two's, LOL.  Will came over and sat on the floor and started telling her  "you need to eat your ice cream, see like me.  You can do it! Come on Molly, you need to eat it!!"   It melts my heart how much he loves his sisters.  She did eventually eat her ice cream, giggling at her brother the whole time, they really do have the best relationship.   She also still takes Naproxen twice daily, she takes that with no issues at all.  I don't even have to hold her, she sits on the counter and takes it willingly.  She's learning to cope and so are the rest of us.
 

Better Days

     I'm excited to report that this last week or so has been full of much better days!  Molly has been back to her normal funny, busy, happy self.  She's been keeping me on my toes and for that I'm grateful! She has been into everything, putting the cat food in the water bowl, playing in the toilet (gross, I know), digging out all of my ribbon and unrolling it, you know, the usual toddler antics.  God has definitely answered some prayers!  She's been eating better and she's back to feeding herself. She's learned to take her pants off and oh what fun that is...I guess she just be running around with no pants for a while. That is, as long as she leaves the diaper on...or maybe I should just potty train her, she asks to go.

     We had her first eye appointment on Wednesday. Her eyes looked great!! Praise the Lord! The eye doctor asked about all of her symptoms and when it started, based on all of that info he said it was unlikely her eyes would be affected (effected?). That's great news! Although, the possibility is there, so, she will continue to have eye appointments every 3 months for now, just to be sure.

    She did get her first injection at home on Tuesday. We all survived, LOL, and she doesn't hate me!! Ok, not that I thought she would, but it's hard to stick my little runt of a child with a needle.   We'll have to do it again in a few days...not looking forward to it, but she's definitely a resilient child.  I hope she's beginning to understand that we're not trying to be mean, just trying to ease the pain...we talk about it fairly often.

I am truly enjoying and cherishing these better days we've been having, we don't know when Hot TaMolly will have another arthritis flare up and we're due for another fever in a couple of weeks. So for now, we're cramming in lots of fun play dates, park days, the splash pad, maybe some strawberry picking, and hours in the sun.

The Rest of the Story

    Here is the rest of the story, at least until today.  Once we agreed that Molly may have a Periodic Fever Syndrome (PFS), then we brought her to her pediatrician each month so she could document each of her fevers.  On one occasion she had an ear infection and on another she had pneumonia even though she had no cough. A little over a month ago, on April 5th, we woke up early to go to our local farmers market. I picked Molly up, still asleep, and put clothes on her. Well, I noticed she wouldn't stand up, at all! I thought maybe her leg was asleep, so we loaded up in the car and went to the market. She rode in the wagon the whole time, but seemed to be ok. When we got home I tried to put her down and she just cried and cried. She still wouldn't stand up, I tried bribing her to walk to me and she wouldn't.  So, off to the wonderful ER we went.  When we got there her right knee was swollen and hot to the touch.  The physician's assistant that we saw thought it was probably an injury, the X-ray came back showing inflammation but no breaks or fractures. I asked about infection, he said he didn't think that was likely, that it was probably just an injury.  That was Saturday, by Monday she still wouldn't walk on it, although she would crawl on it. I took her to the pediatrician, who drew some lab work, her white cells were slightly elevated (so it wasn't leukemia, thank God!), her rheumatoid factor was negative (so we didn't think arthritis), and she was slightly anemic.  We were then referred to an orthopedic doctor.  We saw him on Friday, and as Molly likes to be different, her knee was no longer swollen, she had started walking again and seemed back to "normal". He did a hip x-ray and it came back clear. So, I was told it was probably just an injury and she was on the mend.
      The following Monday, I noticed she was limping again. I checked her knee was huge! I took a picture of it this time.  I called the orthopedic doctor Tuesday morning and went to see him that afternoon.  I showed him the picture and he took a look at her. Then he went and called our pediatrician, the ER doctor, and consulted with several other orthopedic doctors in the practice. Their consensus was that we needed to go to the ER to have her sedated to draw fluid off of her knee to check for infection.  Luckily, they didn't have to sedate her, but they weren't able to get any fluid off either, which was good and bad. It was good that it wasn't a septic joint which would have meant a transfer to Children's Hospital in Dallas for surgery and it was bad because there was still no answer as to what was going on with her.  I had been told numerous times at this point that she was "an unusual case". We joked that she had Molly Jordan Syndrome (MJ syndrome), she just likes to do things her way and be the 1 in a million!  I'll add that when we got to the ER that day, she had fever again.   We were told we need to see a pediatric rheumatologist.  We went home. I called our Pedi's office the next day and they got us a referral to see a rheumatologist at Children's Hospital in Dallas. 
       We went to see the rheumatologist on April 23.  We went through her medical history and by the end the doctor thought we were dealing with 2 separate issues, a PFS and juvenile arthritis.  :(  Not the answer I was hoping for but already had a feeling that's what it was. We were given quite a bit of information, they drew lab work to check inflammation and some other things, and blood for genetic testing (for the PFS).  We got a prescription for Naproxen to be given twice a day and instructions to call if anything changed. And the doctor referred us to Scottish Rite Hospital for Children, where they have a large juvenile arthritis clinic. Well...the next week Molly started waking up at night screaming pulling and tugging at her elbow. So I called to inform them.  Then over this past weekend around May 2, she got another fever, although it was a lot less severe and came down quicker. Then about May 4th she started waking up pulling on her ankle/foot.  I called to ask if I needed to take her to her pediatrician for the fever or just let them know so they could document it. Well then I got a call asking if we could be at Scottish Rite Hospital for Children the next day.
        So off we went, back to the Dallas area which is about 2 hours from where we live.  We saw the same rheumatologist that we saw at Children's. She said they wanted to put her on Methotrexate (which is an extremely low dose of chemo! eek!), I was thinking it would be another oral medicine.  Wrong!! Now I'll be giving my sweet baby an injection, at home, each week.  At least it's not daily.  And a dose of folic acid on the days she doesn't get an injection, which is a pill we have to crush and give her in some sort of food.  So far so good, but I haven't had to give her an injection yet. I'm really dreading that, but I'll do whatever it takes to help her feel better and lead a normal life.
         So for now, we think she has a form of juvenile arthritis and a periodic fever syndrome, which again is unusual. She doesn't like to follow the rule book, LOL!