{"id":512,"date":"2012-03-19T07:53:00","date_gmt":"2012-03-19T07:53:00","guid":{"rendered":"http:\/\/admin.patheos.com\/blogs\/rebeccafrech\/2012\/03\/how-did-we-know.html"},"modified":"2014-08-22T15:49:04","modified_gmt":"2014-08-22T20:49:04","slug":"how-did-we-know","status":"publish","type":"post","link":"https:\/\/www.patheos.com\/blogs\/rebeccafrech\/2012\/03\/how-did-we-know.html","title":{"rendered":"How Did We Know?"},"content":{"rendered":"\n<\/head>

People keep asking me how I knew that something was wrong with #4, something bad enough for doctors and emergency rooms and visits to Children\u2019s Hospital.\u00a0 I know what they are really asking.\u00a0 They want to know when we saw the train headed for us and what did it look like?\u00a0 They want to be able to jump out of the way.\u00a0 I know because I\u2019m a hypochondriac mom and the tale of #4 would have me crazy every time someone had a bump that swelled.\u00a0 (I really do fear the next big catastrophe.\u00a0 It\u2019s part of my charm. You\u2019ll have to trust me on that.)<\/p>\n

So here\u2019s what our speeding train looked like:<\/p>\n

What we now know is that Juvenile Arthritis is an autoimmune disease.\u00a0 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\u2019s began with a nasty ear infection when she was 2 1\/2.\u00a0 Prior to that, she had a normal and boring medical chart.\u00a0 After that, it got interesting.<\/p>\n

It all began with Malignant Otitis Externa, we think.\u00a0 That\u2019s a fancy name for a nasty outer ear infection.\u00a0 Her ear swelled up until it looked more like a fist than a little girl\u2019s ear, and there was a dark purple ring of infection which spread out into her hairline and around onto her cheek.\u00a0 Antibiotics stopped the infection, but not the chain of events which would take 5 years to end in Arthritis. (We think.\u00a0 This is all conjecture based on her medical history, but her Rheumatologist thinks we\u2019re right about it.)<\/p>\n

For the next 5 years, #4 had what we called \u201cflash fevers\u201d.\u00a0 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.\u00a0 Not quite as common, but just as mysterious were the rashes which would come and go as well.\u00a0 She was never quite healthy but not really sick either.\u00a0 Her doctor was puzzled, but as #4 was able to do everything she wanted to do, we honestly didn\u2019t look too hard for answers.\u00a0 The fevers were puzzling, but didn\u2019t interfere with her life.\u00a0 He told us to keep and eye on her, and we did.\u00a0 She looked like a normal little girl to us.\u00a0 I don\u2019t think I wanted to admit that there was something wrong with her, but I now will admit that I knew it.<\/p>\n

When she was 6, my brother got a MRSA infection in his hand which landed him in the hospital for 2 weeks.\u00a0 He was a single dad, and my nephew came to stay with us.\u00a0 The day my brother came to get his son was the day I admitted the truth about #4.\u00a0 I had a newborn in my house, but I didn\u2019t worry about him. I stood on the front porch like a crazed woman and yelled at my brother \u201chow dare he put #4 in danger.\u00a0 She\u2019s medically fragile.\u00a0 She gets all kinds of weird sicknesses and we have to be careful with her. What was he thinking to endanger her that way?\u201d\u00a0 Medically Fragile.\u00a0 No one had ever called her that.\u00a0 I had no doctor to back it up.\u00a0 I just knew.\u00a0 There was something wrong with her immune system and we had to be careful.<\/p>\n

Fast forward to the beginning of this January.\u00a0 The pieces started to fall into place when she woke up with this:<\/p>\n\n\n\n\n
<\/a><\/td>\n<\/tr>\n
It looked like a swollen toe.<\/td>\n<\/td>\n<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n

It looked like a swollen toe that she couldn\u2019t remember hurting.<\/p>\n

Then it looked like a swollen toe that never went away.\u00a0 It started to go down, but never really did.<\/p>\n\n\n\n\n
<\/a><\/td>\n<\/tr>\n
9 weeks later.<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n

That\u2019s where we get to the knee.<\/p>\n

<\/a><\/div>\n

You can\u2019t see it so well in this picture. Let me see if I can help.<\/p>\n

<\/a><\/div>\n

See how the good knee has a knee cap and the other one doesn\u2019t?\u00a0 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.\u00a0 The joint kept tightening until she could no longer get it straight.<\/p>\n

This is what sent us to our family doctor who referred us to an orthopedist, Children\u2019s Hospital, and a rheumatologist.\u00a0 It felt like blinding speed which took us from an active child to one with a chronic debilitating disease, but it wasn\u2019t.\u00a0 It was years in the coming.\u00a0 It\u2019s just the tail end of it which was fast.<\/p>\n

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.\u00a0 She\u2019s on NSAIDS and methotrexate and we\u2019re still waiting for improvement.<\/p>\n

That\u2019s what our speeding train looked like.\u00a0 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.<\/p>\n

Sometimes hypochondriac moms are hypochondriacs because we know the enemy is here\u2026.we just don\u2019t yet know what to call it.<\/p>\n<\/body><\/html>\n","protected":false},"excerpt":{"rendered":"

People keep asking me how I knew that something was wrong with #4, something bad enough for doctors and emergency rooms and visits to Children\u2019s Hospital.\u00a0 I know what they are really asking.\u00a0 They want to know when we saw the train headed for us and what did it look like?\u00a0 They want to be […]<\/p>\n","protected":false},"author":1979,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-512","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"yoast_head":"\nHow Did We Know?<\/title>\n<meta name=\"description\" content=\"People keep asking me how I knew that something was wrong with #4, something bad enough for doctors and emergency rooms and visits to Children's\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link 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