Monday, September 15, 2014

summer surprise (our Lyme story) **warning, this post is VERY long!

Things are finally starting to settle back into a bit of a routine around here after a crazy summer.  With two out-of-state weddings, one family reunion, and three kids going to camp I knew I wanted to keep the rest of the summer low key, but apparently God had a different plan.  We had a couple of big unexpected things this summer, and then of course the kitchen remodel, which obviously we chose to do, but the timing of it all ended up being much different than what we had originally planned for.  I had hoped to start the kitchen right after the first wedding in early June and have it finished by the time we went of vacation in July.  Instead we didn't start the kitchen until after our July vacation and at the same time got our second big surprise of the summer...

It began the first day of our vacation.  We had just gotten to the condo we would be spending the next 5 days in and I was unpacking the cooler when I heard one of the kids say "Tallulah, your cross-eyed!"  The conversation continued among all the kids and finally my husband called me over to look at Tallulah's left eye that was suddenly turning inward.  We quickly did a little Internet research and found some concerning causes for sudden eye turns.  It was Sunday night, so there was nothing we could do right then, but first thing Monday morning I put a call in to the eye Dr that Max has been doing Vision Therapy with for the last 9 months.  The Dr said that he wanted to see Tallulah as soon as we returned from vacation, but that we did not need to cut our vacation short to come back then.  So we made an appointment for that Thursday at noon. 

As the week progressed her eye turn get worse and she developed severe headaches and double vision.  My sister-in-law is a nurse and did some quick neurological tests and said that she didn't see any signs of anything neurological, so we just treated with ibuprofen and waited for our Thursday appointment.  When we went to the Eye Dr he spent a full 2 hours with us, giving up his lunch break to do a very thorough exam.  He confirmed that her eye was in fact turning in about 30 degrees which would cause major double vision and possibly her headaches.  He saw no signs of restriction of movement, which would indicate a 6th nerve palsy, but recommended we see our pediatrician as soon as possible and request an MRI just to be sure there wasn't something going on he could not see.

The next day we saw our pediatrician.  In the 24 hours since the appointment with the Eye Dr Tallulah had developed a small amount of restriction in her left eye and after a phone consult with the neurologist our Dr. decided that it was some form of 6th nerve palsy.  Tallulah's neurological exam was otherwise normal and the pediatrician said it was probably just a result of some virus Tallulah had had and it would resolve on its own.  But, she scheduled an appointment with the Neurologist at CHKD (Children's Hospital of the King's Daughters) for the following Friday just to be sure there wasn't something more going on. 

Once we were home and Tallulah was getting a bit more rest than on vacation the headaches lessened in intensity a bit and the Glasses the eye Dr had prescribed were helping a bit with the double vision, but she still was not feeling well.  Most days she would tell me she just didn't feel good.  She couldn't say why or how, she just felt crummy.  In all of this she never had a fever or rash and as far as we knew had not had any viruses or sicknesses in recent weeks or even months. 

So, while we waited that long week for the Neurological consult I decided to call some Dr. friends who might be able to give me a little insight into what might be going on.  It just so happens that our friend Scott is an optometrist and his Wife Lori is a neurologist.  Both Lori and my sister (who is a nurse) recommended that I push to have an MRI done before the Neuro consult so that the Dr. would have the results in hand and we wouldn't have to wait even longer to know exactly what was causing all this (especially since the appointment was on a Friday).  So I called our pediatrician back and asked if she could order the MRI to be done before Friday and she was able to get Tallulah Scheduled first thing Thursday morning.

Remember, while all of this was going on, our Kitchen was being gutted and our wall torn down.  There were people in our house constantly and I could not leave any of the kids at home alone, so they were being drug along to all these appointments.  We were also gearing up for Regan to begin Challenge A (Classical Conversations 7th grade program) and I had a day and a half of parent orientation meetings to attend.

Thursday morning Tallulah and I headed to the hospital bright and early (the hubby stayed home with the other kids for a few hours but had a meeting he count not reschedule so he dropped them off with a friend who had graciously offered to watch the other 5 until I could pick them up).  The procedure went smoothly and we were home sooner than expected.  The pediatrician called later that afternoon to let us know that the results were normal.  A sigh of relief.  It must just be a virus that had somehow affected her 6th nerve and she would hopefully get over it sooner rather than later!  I was still anxious to meet with the Neurologist and hopefully get some more answers about the true cause of Tallulah's 6th nerve palsy.

The next morning the kids and I all piled into the van and headed back to CHKD for the neurology appointment.  It was awful.  The big kids waited in the lobby while I took Tallulah, Addie, and Emmy back to the exam room.  Emmy, who just turned 2, is quite a handful these days, you know the kind that when you say come, they turn and run as fast as they can in the opposite direction, and Addie is always my needy child who is having a very hard time learning to wait patiently until mommy is free to talk to/help her.  The Dr examined Tallulah and saw the same eye turn and restrictions that everyone else had seen.  I shared my concerns/desire to know what is at the bottom of all this and did my best to stay engaged and present in the conversation while at the same time holding a squirming two year old who desperately wanted to leave the room and even at one point having to chase the 4.5 year old down the hall while the Dr. was mid sentence!  It was not my best mothering moment, for sure! 

It is all such a blur, but I do remember this clearly... after a lot of back and forth and many interruptions he finally said "I think you need to take your kids home, leave them there, and bring Tallulah back to the ER for a Spinal Tap, CT scan and blood work." 

And here is where the panic set in... you know that moment when you want to pick up your child, run out of the doctors office with your ears plugged screaming "I can't hear you, I can't hear you..." and pretend nothing is wrong?  (I've had that feeling once before, and it was when they told me my 19 day old baby girl (Emmy) had Pyloric Stenosis and was going to need emergency surgery.)  I told the Dr there was not way I could do that because there was no one for me to leave my kids with and wasn't she improving anyway?  Maybe we could wait and see if things got worse, or what if I brought her on the weekend when my husband was home and there were no men working in my house?  The Dr said it would be better to go during the day (and not of the weekend) but to let him know what we decided so he could call ahead and let them know we were coming and what tests needed to be done.   I called my husband panicked and confused but we finally decided that we would follow the Dr's advice and go the the ER that afternoon.

I tend to second guess myself once we get to the Dr when it comes to sickness- "maybe I just imagined the symptoms"  or "its really not that bad....".  So all I could think on the way to the hospital and while we waited for the testing to be done was "am I just some crazy mom who's making a big deal about nothing?"  "what if the tests show everything's normal and I've put Tallulah through all this (MRI, CT Scan, Spinal Tap, IV, Blood work) for nothing?"  But, at the same time, between the appointment with the neurologist in the morning and our visit to the ER she was starting to show signs of 6th nerve palsy in the right eye too.

When the results for the Spinal Tap came back with an opening pressure that indicated some sort of meningitis and a high white blood cell count in the spinal fluid, in some ways I was relieved to know that there really was something going on that was hopefully diagnosable and treatable.  There were other blood tests that pointed to some sort of infection in the brain as well. 

From our very first appointment with the eye Dr the idea that Lyme disease could be a possible cause of Tallulah's symptoms had been discussed.  Some said it was a possibility, others said they did not think so.  No one had seen Lyme present with the symptoms that Lu had, but now that the Spinal Tap results had come back with signs of infection they decided that Lyme actually seemed the most plausible cause.  Early in the summer Tallulah had found a tic on her head, but she never had any bulls eye rash (that we had seen anyway) or fevers or achy joints etc.  

When they came out of the room and told me the Spinal Tap results they also told me that we wouldn't be going home that day.  Tallulah would be started on IV antibiotics and would to be admitted to the hospital for anywhere from a few days to a few weeks!  There was still a lot of confusion and unknown at this point and I wouldn't be able to talk to the neurologist and infection disease doctors until the morning. 

By this point we were both starving.  Poor Tallulah hadn't been allowed to eat anything since breakfast because of the drugs they used during her procedures.  I ran to the cafeteria to grab something quickly before they closed for the night and we waited for our room.  It was a long night which lead to a long weekend and then a long week all waiting for results of the many labs they had drawn.  Luckily Tallulah responded well to the antibiotics and the Dr's decided she could continue treatment at home via a PICC line.  We were able to go home after only 2 nights in the hospital. 

We finally got the lab results back over a week later.  Everything came back negative, except for the Lyme test.  She tested positive for many of the Lyme titers they tested for.  Although I am not glad that my daughter had/has Lyme, I was relieved to know what the cause of her symptoms was and that we were already partway through the recommended treatment.  She ended up receiving 24 days of IV antibiotic treatment before the PICC line was finally removed on August 25 (the same day our kitchen was completed).  She just had her final follow up with the infectious disease Dr. today and has made an (almost) complete recovery.  Her last blood tests showed great improvement and she is no longer having any double vision.  She is showing very little restriction of movement in her left eye (the right eye issues cleared up before we finished the IV treatment, since they were the last to present).

There are lots of differing opinions on treatment for Lyme disease and I am still reading and researching to decide whether or not we will pursue any further, holistic treatments.  Part of why I wanted to write our entire story here is because our experience was so different than what is most expected with Lyme.  Lyme disease is serious and can have have lifelong side effects.  Even though I sometimes doubted my mommy intuition, I am glad that I pushed for the Doctors to pursue the possibility of Lyme despite their initial rejection of the idea.

Whew!  that was a long post!  Kudos to those of you who made it through the whole thing!!!  I promise I will try and post something a little lighter/less serious in the next few days :)


Courtney said...

i am so glad that you figured it out--- even though it was a long stressful event. When you got to the PICC line, i really felt all sorts of tingles. Signing a waiver for my husband to have that and watching it was really tough. He said that having it pulled out was the weirdest feeling ever. When it rains, it pours, i'm glad the storm is over --- good luck in the next steps and enjoy your new kitchen!

Nan VanKlaveren said...

Wow! What a story! GLAD you figured it out, but I can only imagine how stressful it all was. I wish I'd been around to help you with your other kids, because I surely would have! Blessings to you!!!

Lory Horne said...

WOW, I knew she had been sick, but I did not realize that it was lime disease. I am glad she is doing well and has recovered. The positive outcome of this is that now the doctors will know that it does not always present itself in the same way. It may help to save other children from the same distress.


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