Tuesday, October 25, 2011

Not My Typical Post

 You might want to sit down for this one..it may be long. I am not sure where my words are going to take me tonight.  Let me start by taking you back almost 5 months.  We had just arrived here in Virginia and we were driving to the Title company to sign our papers to buy this house.  On the way there Emily says, "Mama, what is this in Lucy's hair?"  She was sitting in the back next to Lucy playing with her hair.  I told Lucy to unbuckle at the next stop light and come show me.  She came up front and showed us and Pete and I knew instantly that we were looking at our first tic bite.  I was PANICKED!!  I did not know what to do.  Pete tried to get it off her...but that sucker (literally) was so stuck to her head.  I pulled into a grocery store parking lot and ran in to buy tweezers and rubbing alcohol.  I came rushing back to the car and Pete had called his mom.  She quickly googled tic bites and told us what we should do.  Get it out and clean the area.  Even with the tweezers we had a really hard time getting the tic off of her.
 Finally we got it off and Pete and I were both pretty freaked out.  It just felt..awful.  We had been in Virginia a total of 3 days and this was NOT what I wanted to be dealing with.  Prior to moving here a friend of ours knew a young girl who had severe Lyme's Disease.  She was in a wheelchair and looking at years of recovery.  After hearing that story and finding out Lyme's comes from tics I told Pete..."No thanks to Virginia!!"  But telling the Coast Guard that his wife had a fear of tics was not going to work. 
 Anyway, life went on.  We proceeded to pull lots of tics off the kids this summer and for some reason NONE of them were as bad as that one Lucy got back in June.  Something about that tic made me feel...worried.  This is the point in the story where I may want to remind myself to always listen to myself.  A few weeks later Lucy started telling me she had headaches. Mostly they seemed to be in the morning and not last long.  There would be a few days of complaints and then they would go away.  During this 3 week on and off period I told Pete, "Hey, remember that tic bite?  I wonder....."  But the headaches went away and I just figured all was well.  About 1 month ago she woke up one morning saying her arm hurt.  She could not lift her left arm and getting dressed was really painful for her.  I just figured she had fallen and sprained something.  Lucy is like a jumping bean that never lands well when jumping..she falls ALL the time.  Having an injured arm would be of no surprise.  But that too, magically, went away!!  Well, actually it went away and then came back.  I was not linking this to anything yet but thought it might be wise to haul her into the Dr. to get an x-ray to see if she had fractured something.
 But then poof..gone.  No more arm pain!  During this time period Lucy would wake up some mornings  saying her neck hurt.  I just figured she slept on it wrong and I felt validated because it always went away.  Well, Monday morning Lucy woke up stood up and collapsed on the floor.  She started crying and calling for me.  I went in and found her on the floor.  She said her legs hurt and she could not walk.  I thought she had slept weird and her leg had gone numb.  I started rubbing her legs and she cried in pain.  I kept trying to coax her into being OK and getting up and walking it off...but she was really hurt and would not even attempt walking.  I looked at her knee and it was pretty swollen.  Well what in the world???  She had raced up the stairs the night before right at bedtime.  We walked all over our neighborhood Sunday and she was FINE..nothing happened.  All of a sudden I was TERRIFIED.  That tic bite, Lyme's Disease!! I had heard of this...I had heard of kids not being able to walk, feet being numb, hands tingling.  I called for Pete, "Can you come carry Lucy downstairs she says she can't walk."  He came up and I said ..."Do you know what I think?"  He said, "Lyme's?"  That was it.  He thought it too.  All of a sudden I added it all up. I looked back 5 months and saw each ache as the symptom that it was.
 I have not established a Dr. for the kids here yet.  We have not needed one and I kept putting it off.  I am not a "take kids to the Dr. often mom". Well I started calling every Dr. I could get a number for.  With each call I was getting more worried. Nobody could see me..they all were not willing to see a patient for the first time on such short notice.  I will reserve my irritation for the medical community for another post.  Nevertheless, I felt more and more scared.  Lucy was truly in pain and the worst of the worst was flying around my brain.  I told Pete, "I am taking her to the ER!"  All the kids were pretty panicked.  Lucy not walking is like the most unbelievable thing and they were seeing it.  I pulled myself together and went to the ER.  I got there and the nurse asked what was wrong..."My daughter has Lyme's and now she can't walk."  They asked if I knew for a fact she had Lyme's and I said, "Not for a fact fact...but I know!"  They were sweet.  They took me right back and I told everyone who walked in that hospital room every detail of every symptom for the last 5 months.  They each agreed...sounds like Lyme's.  That is where my knowledge began and ended...now what? Why is she not walking?  What is happening?  Is she OK?
 She got blood draw and tests were run, x-rays taken and her little body got poked.  So where are we now?  Her actual Lyme test won't be back until next week.  But all the other blood tests that were run show the signs and markings of Lyme's.  She had tons of fluid in her knee joints and that is what was making her unable to walk..it just hurt.  Having joint issues is a big indicator of Lyme's.  Her blood work showed elevated levels that indicated inflammation and that too is a sign of Lyme's.  So....what do we do??  She is being treated for Lyme's which is a simple course of antibiotics for 4 to 6 weeks.  She has to see an orthopedic Dr. to keep track of her joints and the fluid that has built up.

Bottom line is... she will be fine!!  While she is on Motrin she is walking around and feels much better.  The swelling is still there and I am still worried.  But really, she will be fine.  Lyme's shows itself in many different forms.  Lucy never developed the rash or flu like symptoms that is an indicator after a tic bite.  It seemed to go right for her joints.  She may have some of the joint pain for up to a year after treatment for Lyme's, but she will be good as new pretty soon.
I could write another 2000 words on Lyme's and what I now know.  But I know some people have it a lot worse and things could have been a lot worse for Lucy too.

 Last night I was a wreck.  The Dr's at the hospital were great..but I left not feeling like I knew all that was going on, plus Lucy was still NOT walking and in  great pain.  We went to another Dr. today and she made me feel better.  And Lucy began feeling better too.  I have more follow up appointments and I will keep you posted.

 I have felt so guilty for not listening to my own self 5 months ago and then as we went along when those little situations came up.  I knew something was not right about that tic.  I just got "that" feeling.  I am just so glad the God led us to figuring it out sooner rather that later. 

She is tucked into bed right now feeling better.  Thank you God!

15 comments:

  1. What a scary situation! I'm so glad you're starting to get answers, and we'll keep you all in our prayers.

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  2. Wow, Lisa! How scary! I've lived in SC/NC almost my entire life, and I never pay much attention to ticks. In fact, I'm so used to seeing them that I frequently notice them on the kids clothes before they ever attach. I'm so glad that Lucy didn't get the worst of the symptoms, and I hope she's completely healed quickly! Hooray for mama's instinct and the still, quiet voice of God.

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  3. Wow That is very scarey! What good intuition you had though in not waiting longer than you did. Adding those little things up would be hard for anyone to figure out what was going on. So glad that things will be ok though! God was truly looking out for you all.

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  4. I'm totally paranoid about ticks - so glad Lucy will be OK!

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  5. We are praying for her and glad she will be okay. You are a great Mom and all your kiddos are so lucky to have you. Please keep us posted and we will continue to pray for her quick recovery.

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  6. How scary! I'll be praying for little Lucy. Hang in there Mom. It'll all be ok.

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  7. please don't feel guilty, you are doing the best you can, you couldn't know before. now you are doing what you can. praying here too for sweet lucy (love all the photos of her) and you too mama. no more guilt now. :)
    xxx

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  8. Bless her heart...praying for healing...Peace be with you...

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  9. My brother and I both had Lyme Disease as children and other than a couple of weeks of medicine and lethargy, we're perfectly find now and have no problems (at ages 25 and 18). As scary as it was to know we had a "disease"... of all of the ones to have, Lyme isn't so bad!!! Don't worry - this too, shall pass!!!

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  10. How scary! Thank God she's going to be okay.

    Praying for her ... and for you. Sick babies take years of mommy's life, or at least it can feel that way.

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  11. how terrifying! we've had 2 cancer scares with my kids, both turned out okay. prayers for lucy (and mommy)

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  12. Ug, those ticks. We live in CT, next to the town of East Lyme.....they are everywhere. I'm sorry that you had to watch her through the symptoms, but glad that she and you are on the mend! Tick Check every night!!

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  13. oh my gosh! How scary and I am so sad you all have had to go through this, especially Lucy! Thank goodness for the internet and for the all of the literature that is out there on Lyme disease because his diagnosis could have totally been missed! I am glad that she will be ok!

    Love, Jenny

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  14. God Bless you my friend!! And kiss that sweet Lucy for us!! We will keep you all in our prayers, I am so glad that everything is going to be ok!! I can only imagine what you guys went through and are going through. Keep us updated!!

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  15. Lisa, I had to come back and read your post again. We spent about 30 hours in the hospital last week with Benjamin and it was determined that he has Lyme's disease also. For him, his only symptom was a sore and swollen knee, but he could still walk on it. I took him to the regular doctor about 24 hours after discovering it and she panicked, thinking it was something else. She sent us directly to the ER. There we were told, "best case scenerio" would be Lyme's! That doesn't sound good to me, but apparently, the alternative was even worse! Benjamin is now on antibiotics for 28 days and is already doing much better. I hope Lucy is doing well too. How scary!

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