Sunday, August 7, 2011
August 7, 2011 ~ Day 240
Diagnosed by Google...
This post isn't going to be written with fancy or elegant words, I just don't have it in me tonight.
Last night I rushed our younger son to the Emergency Room - for the second time in two weeks.
For several days he had been complaining about different odd symptoms.
Here is the Timeline of our events:
Monday, 2 weeks ago: His fingers were smashed in the front door causing two open fractures, surgery, splint, and 10 days of Keflex prescribed to prevent infection in bone
6 days later we notice that his eyes are red. Bloodshot, looking like pink eye but no crud coming out of the sides. No sticky stuff. It looks like an allergy.
On day 7, he begins to itch like crazy around his neck and head - so much that I call the pediatrician on day 8 and ask if he is having an allergic reaction.
"It sounds like a heat rash," the doctor says. This makes sense because it has been very hot outside. "Call us if it gets worse after he takes the next dose of the antibiotic."
It does not get worse, I do not call. Eyes are still red.
On day 11 he begins to complain of heel pain. "Mommy, my feet hurt. Mommy, it hurts when I bend my toes."
I tell him everything is going to be alright. Mentally I note the time and decide to call the doctor the next day if the pain continues.
On the morning of day 12 my son awakens me by bawling next to my bed. "Mommy my feet hurt me so badly. They hurt so much. I can't walk on them." He is sobbing.
I call the pediatrician. This time the nurse talks to another doctor, as our doctor is out for the day. "Sounds like tendonitis. When will you see the orthopedic surgeon about his cast?"
"Great, why don't you have him take a look at the feet while he is there. Until then have him keep his feet up, rest them and use a heating pad for discomfort. He can also take ibuprofen."
I tell the nurse, again, about the red eyes. "If they start to weep or ooze, call us back," she said.
Seven hours later I am giving my son a bath when I notice his feet.
They have the strangest looking rash on them I have ever seen.
There are multiple pale circles under the skin surrounded by blotchy red skin, almost in a honeycomb pattern. "What in the heck is that?" I wonder. The rash is on the soles of both feet, and seems to be spreading.
I try to think where I have ever heard of circle rashes - but all I know about target rashes related to lyme disease. I call the after hours nurse.
"Could be ringworm," she said. "Could be fungal. I'm not sure what it is, to be honest. You should call your doctor on Monday. Oh, and if it gets worse you can call me back but we'll probably just refer you to the emergency room or urgent care."
By 10pm my son is scratching at his feet madly. "Mommy they itch. They itch!" He begins to cry again. I suddenly notice that the rash is now on his hand too (the one I can see, not in the cast). Four or five large blotchy circles.
My gut is churning, and I know that all of this is just WRONG. Something is wrong.
Finally in desperation I turn to google.com.
I google the following: "symptoms red eyes, painful heels, muscle pain, circle rash on feet, itching."
Here is what I get from FamilyDoctor.Org:
20. Do you have a red, blotchy rash, with "target-like" sores or hives?
This could be ERYTHEMA MULTIFORME, a common rash caused by strep throat, viral infections and reactions to medicines.
So I google "Erythema Multiforme" and check images. All it takes is one photo to know that Google has helped me find the correct answer in five minutes to a problem it has taken six days for my pediatrician's office to consistently misdiagnose.
Then I take a moment to read about Erythema Multiforme, and my stomach drops.
Here is the page I read from the National Institute of Health... and here is the exact paragraph that got me into the car with my son at 11:20pm on a Saturday night rushing back to the ER:
"Mild forms of erythema multiforme usually get better in 2 - 6 weeks, but they may return. More severe forms may be difficult to treat. Stevens-Johnson syndrome and toxic epidermal necrolysis have high death rates.
When to Contact a Medical Professional
Go to the emergency room or call the local emergency number (such as 911) if you have symptoms of erythema multiforme. If a large area of the body is involved, it is an emergency situation."
My son's rash had appeared and spread to his hands in 3 hours. I had no idea how much further it would go. My heart began to race as I carefully put on shoes and a sweater, packed a bag with sweaters, a blanket and some books, dressed my son and got into the car.
"We're going to have another adventure, sweetheart!" I told him.
"Okay Mommy. What are the doctors going to do to me this time?"
* * * * * * *
My boy, who was itchy and uncomfortable but in calm and good spirits, drove to our local Children's Hospital ER and arrived in only 18 minutes this time. Unfortunately there was a long wait, but he was extremely patient and we read stories from the "Shrek" fairytale book given to him by his uncle for Christmas.
He lay his little head on my lap and rested while I prayed.
I've tried very hard throughout these past weeks to focus on positive things when I am feeling worst to try to raise the energy I am sending out into the world to a better place. It doesn't do me OR my kid any good to have me sit around freaking out about unknowns.
We told knock knock jokes and while mine were limited to jokes about oranges and bananas I heard on the playground when I was a small child, his were much more creative with a typical punchline of
"Butt-Butt poo-poo! HEEEEHEEEEHEEEE!!!!!"
For once I didn't tell him to stop the bathroom talk, because it felt better for both of us to be giggling and being silly together than fretting and being anxious. I laughed out loud at his jokes, which made him happy and he laughed even harder.
I also asked him to tell me about his favorite memories of times we'd spent together as a family.
"I loved when we went apple picking Mommy. When we baked the apple pie."
"Let's do that again this year!"
"That would be great Mommy. And I loved when we went to the island on the boat."
"Well we're going to do that again in a few months!"
"I want to swim in the water with my daddy. Will my cast be off by then?"
"Yes buddy. It definitely will."
I tried hard to envision him doing all of those things with us - hale and hearty and happy and HEALTHY.
The nurses and doctors could not have been more loving or sweet with him and all of them commented about how cute he was and how they could eat him up with a spoon. The doctor told him he was going to be a real heartbreaker in a few years, and all of them were comforting and kind to both of us.
When we answered the nurse's questions at triage and I showed her the papers about the erythema multiforme, she nodded and said, "I think you may have correctly diagnosed him, Mom."
Sure enough, after a thorough examination the doctor on duty in the ER confirmed that indeed it is erythema multiforme.
"My biggest concern at this point," she said, "Is that his eyes are involved. I would like you to see an ophthalmologist on Monday morning to make sure there isn't anything serious going on in there. We want him to keep that great vision."
She then let me know that we are in for a long haul. It may take anywhere between 2 and 6 weeks for this problem to clear up and even then, it may recur throughout his life. We have to watch him carefully to make sure his skin does not blister and ulcerate, that it does not slough off. (Horrible.)
According to the doctor there may be many causes for it - including mycoplasma (which we know our family has had a lot of lately), viruses, ibuprofen or the Keflex that he recently took. Once he is fully recovered we will need to begin working with an allergist to find out what he is allergic to, to see if there is an allergic root to the hypersensitivity reaction.
Unfortunately there is no real treatment for erythema multiforme. Because...
...just like his mommy's myriad problems, my kid's problem is autoimmune.
Which means I am probably going to have to take him at some point to see either my rheumatologist or my lyme doctor, to find out if I am at the base of his troubles.
Unfortunately, and it make me feel no end of guilt, I likely had all of my current chronic bacterial infections while I was pregnant with all three of my children. Who knows how this affected their developing little bodies. It might explain a lot about my challenged pregnancy with the baby girl...
* * * * * * *
So this is where we are now. The wonderful doctors and nurses discharged us at 2:40am. We drove home safely and I bathed my kid from head to toe (except for the casted arm) and then put him to bed. I lay awake until after 4am, trying to breathe. Trying to think happier thoughts about our future as a family.
Trying to let go of this mountain of worry that is hanging heavy on my shoulders.
I don't have a happy ending, nothing philosophical to say.
All I know is that I love my three kids a million times more than I ever believed possible before I became a parent, and I would cut off my own arm if I thought it would ensure them a long, happy and healthy life.
In my darkest hours I still believe in the power of prayer and the importance of changing my heart and thoughts into a positive direction. I believe that things happen for a reason, and I am holding on to see the greater reason behind all of these recent events.
For those who know our family, and even those who don't, if you are reading this post I ask you very humbly if you would be willing to pray for our little boy.
You know what they say ~
To the world you may be just one person, but to one person you may be the world...
This precious kid is, along with his darling siblings, my world.