My Todler Has Lyme Disease? No...really?!

I mentioned in my last post that we were the "good kind of busy" lately...okay this is not the good kind but here's one thing that kept me preoccupied this summer...my 3 year old having contracted Lyme Disease.

As a kid who grew up in the country and basically lived in the woods and tall grass, I had always been used to picking ticks off of myself every night as a kid.  I never saw a deer tick myself and figured that they are one of those things people worry too much about.  Plus I always wear bug spray anyway because mosquitoes LOVE me.

I know this post may be a bit lengthy and boring for my average reader, but I am posting a lot of detail for a couple reasons...1) just for my own records and 2) for anyone who may be google searching this stuff and could benefit from the post by identifying these symptoms on their own kids (or self)....hopefully saving them from the late stage horrors of Lyme's disease by catching it early.

DAY 1: So on Thursday July 25th Toby woke up from his nap with a high fever.  I did my usual "kid with a fever" routine...got out my "sick kid tote" which holds bottles of Tylenol, Ibuprofen, a thermometer, syringe for medicine, and a note pad to write down time, temps, and does given.

DAY 3: Saturday morning July 27th he still had a high fever (even while on medications, over 102).  So, we took him into our pediatrician's walk-in clinic (25 minutes from home).  There they did a throat culture (because he complained of his "chin hurting" while pointing to his throat), and told us "give it a couple days."

Monkey and two fingers...comfort...

DAY 5: A couple days later I made an appointment with our regular pediatrician (10 minutes from home) on Tuesday, July 30 because his fever was still going strong on day 5. Neither of my boys have had a fever that high for that long.

DAY 6: The doctor asked if he had any rashes, which he did not, and he just said to give it a couple days again. Or, if  were really worried, take him to urgent care for blood work.  He assured me that Toby was too hysterical for his nurses to hold him down and take blood at the clinic (he was terrified after the uncomfortable throat culture he had previously), that they don't have numbing cream like urgent care does for the needles (what?! It's a pediatrician's office!!), and that it would take days to get results back anyway.  So, since he was not concerned with 5 days of high fever, we waited. (In hindsight, we should have probably just taken him to urgent care! But even then they likely wouldn't have done the specific tests for Lyme.)

"Do I LOOK like I feel better?!??!"

During that time it was my mission to get him to pee at least 3 times a day which was hard.  He wasn't eating, and wasn't drinking.  I was lucky to see him pee once during an entire day, besides a wet diaper at night. I got him some Pedialyte and made him take tiny sips every few minutes and giving him freezer pops until he finally peed...YEAH!  Mini victory.  The nurses and doctors said we don't have to worry if he is peeing at least 3 times a day.  Aaah, false sense of security....

DAY 7: The next day, Wednesday July 31st I noticed a rash developing around Toby's eyes and on his chest.  It was no particular shape, but was red and I thought I'd better let the doc know because he had asked if Toby had any rashes previously.  I thought this might mean it was something else, and he said to call if I wanted to run anything by him and we could talk.  Never got ahold of the doctor but a triage nurse called back and said that since he was still peeing at least 3 times a day, the meds were lowering his fever, and the rash wasn't itching and bugging him, that I shouldn't worry and again, "give it a couple more days."

The face rash after it moved from around his eyes down to his nose and cheeks

DAY 9: Two days later, on Friday, August 2nd, the rash around his eyes had moved down to his cheeks, the one on his chest was staying the same, but more rashes started appearing all over his body...his back, his belly, his arms and legs.  These were a very uniform, round shape and got me worried.  He also was complaining that his arms and his legs hurt.  SO, I called the doctor and again was only able to talk to the triage nurse.  I described the rashes as being round and red on the edges, and purple in the center.  (Just completely forgot that this his exactly what the rashes are supposed to look like after a lyme infected deer tick bite) They were appearing all over his body and getting darker, and his arms and legs were hurting. I told her I had photos that I could email her of the rashes but she said they don't have email. (huh?!) Her reaction was .... guess what ... "give it another day or two.  Or maybe give it 3 days and then if the rashes haven't started to go away to bring him in for a look at the clinic.  (this is the point where I look back and get really angry...as I later learned that all of these symptoms are apparently CLASSIC lyme.)

DAY 12: On Monday Aug 5th when the rashes were not any better, I made an appointment for as soon as I could get in, the next morning (Tuesday).  But my plans for the day changed and I had to swap a Monday plan to Tuesday, so I figured I'd just take the trek back out to the walk-in clinic and wait it out so he could be seen right away that day.

Boy am I glad that my plans were messed up and we went in a day early! Had I waited until the next day, the rashes would have been almost gone, leaving nothing visual to diagnose...

The doctor who saw us that day knew her stuff and didn't try to pass everything off as "just some infection to wait out."  She immediately suspected Lyme's disease, and pulled up a photo on her tablet of the very rash Toby had.  Apparently we had not only not seen the tick that bit him, but he never had the original rash which (usually) develops at the bite site.  We were now on to later stages where the bite rash goes away (if there was one, which there isn't always), and other rashes appear on the rest of the body.

The second she said "Lyme" a chill ran through my body as I thought about our friend who was diagnosed VERY late and is suffering insanely from this horrific disease.  A few minutes later she brought in another doctor who confirmed her suspicions.  From there she had the nurses take a couple vials of blood for testing (this was awful for poor Toby...especially when I had told him they were only going to look at his rash!).  It took me and three nurses to hold him down to take blood.  :-(  The doc said it would take a couple days to get the blood tests back, but thought we should begin treating him "immediately."  She called in a prescription and we left.

Being that the plans with my boys had changed that day from lunch and playing at McDonald's Play Place to getting needles stuck in Toby's arm, I tried to salvage what was left of the morning by taking some Culver's from the drive-through over to a picnic table at a nearby playground.  While there I got calls from both the doctor and the pharmacist letting me know that they do not have the medication in stock, and no pharmacy around had it either.  It is apparently very rare and nobody carries it.  (Since Toby is allergic to penicillin he couldn't have the usual meds)  It would take another day to have it ordered in.  The pharmacist was SHOCKED that our insurance covered this medication, as most do not.  And I was slightly shocked to see that our share of the COVERED price was over $300.  But when you have priceless kids to treat, you whip out the credit card!!

DAY 13: The next day, Tuesday Aug 6th, his rashes started to go away.  At this point I'm just so glad that I had brought him in a day early so the doc could see the telltale rash!  I shudder to think that if I had listened to the triage nurse, I would have thought that everything was fine with the rashes going away and may have canceled the appointment!  Toby was complaining a lot of his knees hurting, so I called the pharmacist to see if I could give him Ibuprofen, if it would react with the meds he would hopefully be taking later in the day.  It was approved so that gave him a little relief.  His meds came in and the moment the pharmacist called I loaded the kids in the car and we had it in him within 20 minutes.  The medicine is thick, grainy, and while fruit flavored, Toby HATED it.

That afternoon after his nap things got bad.  He literally couldn't walk across his little bedroom, screaming and crying that his knees hurt. I carried him to the couch where he spent the rest of the day moaning, crying, shaking... and I pretty much did all the same things just from having to watch him.  I called the doctor's office to see if there was anything more I could give him for his pain (nope, Ibuprofen was it apparently).  They informed me that it was going to get worse before it gets better.  Well, at least I knew that it was supposed to be worse...

A friend suggested a warm epsom salt bath, so we tried that.  He was screaming so hard because he didn't want a bath, holding his legs up out of the water.  Eventually I got him to lie back for a few minutes, but you just can't explain to a hysterical toddler the benefits of relaxing in a hot tub! It's like explaining how good a nap will feel when they are over-tired!  Ugh...When I lifted him out of the tub and tried to stand him on the floor for a minute to dry him off his little legs just crumpled to the ground.  "I can't stand, it hurts Mommy!"

More of the horrible medicine he hated and off to bed.  For his story I picked a little Mickey Mouse board book that he loves and knows every word by heart.  Whenever we read it, I will start each sentence and he'll finish it.  Not tonight.  He seemed like his mind just wasn't there...he'd just shake his head and wouldn't speak.  I tried pointing to things in the pictures and asking him what color it was.  He'd stare blankly, then worriedly shake his head, and sometimes mutter "I don't know."  This stuff was really scary.  I pet his curly head, did his bedtime prayers for him, gave him tons of kisses, and let him rest.

A couple hours later he had a 104.5 temperature.  I gave him Ibuprofen and didn't sleep much but at least he finally did!

DAY 14: The next day (Wed, Aug 7) things started looking up...well, at least he wasn't screaming and howling in pain and didn't have a fever anymore.  I felt slightly better about having to leave for the day (my face painting "super bowl" as I painted at a county fair that week).  But from Daddy's reports he was able to go to the park playground (with lots of rests between walking), and spent a LOT of time playing games on my ipad.  He forced down the meds but didn't need any ibuprofen.

DAY 15:  On Thursday, Aug 8th I got to be home with the boys as my mom manned the fair booth.  I took the boys to visit the fair and for the first time in over a year we had to bring a stroller.  Toby loved the fair, but was pretty tired by the end and couldn't stand out of the stroller for too many minutes at a time.

The most likely place he could have been bitten was on a play date a couple weeks earlier where we were playing in tall grass and climbing trees.  It was totally my fault for not inspecting him for ticks afterwards.  Of course I doubt I would see a deer tick, most likely the nymph which is the size of a poppy seed, when I'm used to spotting larger wood ticks.  So, I TRY not to beat myself up too bad for it, but let's just say that on our family camping trip that followed, both boys were thoroughly bug-sprayed and tick-checked daily!!

Today you'd never know he had Lyme (thank you, GOD!!).  Luckily we caught it JUST in time.  I hear so many horror stories of people who have had it for years.  Now we just pray that he doesn't have any long term problems from this.  But, the lesson to be learned is this...be sure to use bug spray before and check your kiddos after playing a lot in the tall grass or woods.  And if your gut tells you something bigger is wrong with your kid, ignore the nurse on the phone and just take your child in to see a doctor!  I hope this post helps someone else to either identify the rash and symptoms, or encourage them to get a second opinion before it's too late!