So here's what our speeding train looked like:
What we now know is that Juvenile Arthritis is an autoimmune disease. Sometimes they just show up on their own, and often a really bad virus or infection will kick it off. Looking back through her medical history, it looks as if #4's began with a nasty ear infection when she was 2 1/2. Prior to that, she had a normal and boring medical chart. After that, it got interesting.
It all began with Malignant Otitis Externa, we think. That's a fancy name for a nasty outer ear infection. Her ear swelled up until it looked more like a fist than a little girl's ear, and there was a dark purple ring of infection which spread out into her hairline and around onto her cheek. Antibiotics stopped the infection, but not the chain of events which would take 5 years to end in Arthritis. (We think. This is all conjecture based on her medical history, but her Rheumatologist thinks we're right about it.)
For the next 5 years, #4 had what we called "flash fevers". We now know that these fevers of 102-104, which would hit her suddenly and disappear within an hour or two with no other symptoms, are symptoms of auto-immune issues. Not quite as common, but just as mysterious were the rashes which would come and go as well. She was never quite healthy but not really sick either. Her doctor was puzzled, but as #4 was able to do everything she wanted to do, we honestly didn't look too hard for answers. The fevers were puzzling, but didn't interfere with her life. He told us to keep and eye on her, and we did. She looked like a normal little girl to us. I don't think I wanted to admit that there was something wrong with her, but I now will admit that I knew it.
When she was 6, my brother got a MRSA infection in his hand which landed him in the hospital for 2 weeks. He was a single dad, and my nephew came to stay with us. The day my brother came to get his son was the day I admitted the truth about #4. I had a newborn in my house, but I didn't worry about him. I stood on the front porch like a crazed woman and yelled at my brother "how dare he put #4 in danger. She's medically fragile. She gets all kinds of weird sicknesses and we have to be careful with her. What was he thinking to endanger her that way?" Medically Fragile. No one had ever called her that. I had no doctor to back it up. I just knew. There was something wrong with her immune system and we had to be careful.
Fast forward to the beginning of this January. The pieces started to fall into place when she woke up with this:
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| It looked like a swollen toe. |
It looked like a swollen toe that she couldn't remember hurting.
Then it looked like a swollen toe that never went away. It started to go down, but never really did.
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| 9 weeks later. |
That's where we get to the knee.
You can't see it so well in this picture. Let me see if I can help.
See how the good knee has a knee cap and the other one doesn't? It was just as swollen on the outside as the inside before they drained it. (That was over a month ago.) The drained part never refilled but the other never went down. The joint kept tightening until she could no longer get it straight.
This is what sent us to our family doctor who referred us to an orthopedist, Children's Hospital, and a rheumatologist. It felt like blinding speed which took us from an active child to one with a chronic debilitating disease, but it wasn't. It was years in the coming. It's just the tail end of it which was fast.
As of today, she has 4 joints involved: the knee, ankle, and top of the foot on one leg and the toe on the other. She's on NSAIDS and methotrexate and we're still waiting for improvement.
That's what our speeding train looked like. A long slow series of unexplained fevers and rashes which never lasted long enough for the doctor to witness, and then the swelling and contracture.
Sometimes hypochondriac moms are hypochondriacs because we know the enemy is here....we just don't yet know what to call it.
10 comments:
I have a (grown) daughter who's also always been kind of sickly. Nothing ever really diagnosed. A mother sometimes just 'knows' something's wrong, and never stops worrying. I wish you and yours good luck, there's really no other special hell than worrying about the health of your child.
Thank you for your post. I too have been accused of being a hypochondriac mom. I've "fired" several doctors that weren't willing to "listen" to me.But, when faced with making a medical decision about our son, a very smart pediatric oncologist once told me, "Sometimes it's not about the science. Sometimes it's about your gut. Afterall, you're the Mom and we're just the doctors."
You, #4 and your family are in our prayers.
I pray for that little baby....I'm so sorry!
Autoimmune diseases don't just come as one disease. If you have one autoimmune you usually have others that pop up.....
Poor little baby, heavy little cross!
A swollen knee like your little girl's is what gave me my diagnosis of RA. But I'm a grown woman and not a young girl so I really sympathize with her as she just wants her life back to play and do the things she used to. I honestly believe she will get there or reasonably close as the medications are so much better now than just 25 years ago. I take methotrexate. The rheumy told me that very rarely that methotrexate is given alone. Most people take two meds. But hang in there. My knee is almost back to completely normal but it did take close to a year. Don't be alarmed. I had that swollen knee a whole year before diagnosis thinking it was a knee injury. Your little girl will feel the difference. It just takes time. God bless you all.
I just wanted to let you know that #4 is constantly in our prayers. As a runner (with knee issues), I cant even imagine what she is going through. Every run I take now- especially my long ones- are done for #4. My BFF is doing the same. We are asking God to take our prayers and energy and channel them into healing for #4, so that one day, she'll be out there running (even if it isnt physically with us since we are several states away!).
Continuing to send prayers and love your way.
Bless her dear heart!
My experience was that it took some time to find the best combination of drugs. My doctor tried different combinations until I ended up on three different ones that finally became the magic mix - an NSAID, another drug called Plaquenil, and a steroid called Medrol. Those three kept my JRA pretty stable most of the time for years.
Then, with my first pregnancy I was able to go off of all of them - truly amazing. Later I had to restart the steroid, but have never had to go back to the others (I do take Ibuprofen when I have a bad day), and have been on a very low dose of that steroid for years now. I never would have believed it when all of the JRA nightmare started. I will pray for wisdom for your doctor to find just the right things for your daughter!
I saw a similar train hit my #1. Juvenile diabetes is also an auto immune disease, also takes years to come on and the tail end hits at blindingly fast speed. We've been told by his endocronologist (sp?) that his condition, too, was brought on by some kind of infection years before. I knew there was something terribly wrong, too, but not even my husband believed me.
Juvenile diabetes is not nearly as debilitating as RA but it does put quite a crimp in a 12yo (as well as the family's) life when he has to watch every bite he puts in his mouth, calculate carbs, and give himself shots all day, and at night. Modern technology makes it possible for him to be a little freer--he now has an insulin pump, so he is constantly being medicated. At 17, it has become a way of life. He says he can't even remember what it was like to eat anything without thinking about it and calculating how much insulin to take. His future, while better than Type 1 diabetics of a few decades ago, is going to be wought with all kinds of complications.
I don't mean to sound like I'm trying to outdo you--I'm not, I swear. I just wanted you to know that there are others who've had to stare down that train. It's not pretty, but moms have to grit their teeth, take it head on, and pray. You can do it--You have to.
Love you, you're in our prayers!
Please look into the GAPS diet. GAPS can heal autoimmune diseases. My family of nine has had phenomenal success with the diet. We have been on it just over a year.
Blessings,
Teresa
I have a grown daughter who was diagnosed at 13 with JRA. The only thing that stopped the progression was Embrel. I don't know if they give that to children, but I thought I'd throw it out there. They also tested her for Lyme disease at the beginning. God bless.
My daughter is 15months. She is also #4. She has the exact same looking swollen toe as your #4. Just on the other foot. We are going to the rheumatologist tomorrow. I pray for you and your daughter and your family as you travel on this journey. I hope we get an answer tomorrow. I love the part where you say 'Sometimes hypochondriac moms are hypochondriacs because we know the enemy is here....we just don't yet know what to call it'. I cried when I read that. You hit the nail on the head.
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