Tuesday, April 10, 2012

Aphthous Stomatitis

Lily had been sick off and on, since January and we were beginning to worry.  She was looking pale, and just not acting like herself.  About every 2 weeks Lily would break out in a fever of 101 for 4-5 days.  We took her into her pediatrician who agreed something wasn't right. So we did some blood work and everything came back pretty good, her white blood cell count was a little high, suggesting she had some kind of bacterial infection.  So the Dr. prescribed her an antibiotic (Sulfa) to treat a Sinus Infection, thinking a Sinus Infection would explain the flare ups.

It was Day 9 (Thursday) of the antibiotic (it was a 10 day prescription) and of course, Day 9 was the day we left for our vacation to Malibu.  To break up the drive, we drove to Clovis and stayed with family.  Once we got to Clovis and all settled in for the night, I noticed Lily was feeling warm, and just so happened to notice 5-6 red spots on her tummy.  She was up all night, miserable as ever.  Those spots quickly spread to a rash covering her whole body.  We took Lily into the ER (Friday) to figure out the problem.  After a few hours there, we were sent home, the DR concluding that she was having an allergic reaction to her antibiotic and that besides the rash, she looked great.  We were baffled as to why she would still be running a fever, but he told us it was because her body was still fighting some kind of infection
(what he didn't know, nor seem to care about), but no need for any medicine, she should be able to fight it on her own.
 So we hit the road and headed to Malibu, hoping some IBprofen would reduce her fever and get her feeling better.  We got to camp, set up our tents and unloaded the van.  I watched Lily playing with her cousins for a minute and was concerned because she was not moving her neck at all.  I took her to Jared and he expressed concern as well.  We started to become very worried, and Jared and my Dad gave her a blessing and Jared drove her 25 minutes back into town to the nearest Hospital  (Friday night) while I stayed at camp with Kayson.

The Dr. wasn't convinced it was Meningitis, but didn't feel comfortable saying it wasn't either.  So they had to do some blood work and do a spinal tap on Lily.  What a brave little trooper she is.  My dad drove me to the hospital, but I missed the spinal tap by a few minutes.  Jared had to be the one to hold her down and from what I hear, I'm glad I missed it. We waited an hour for the results, which came back negative (THANK HEAVENS) and were sent on our way.  Again, the DR could not explain what exactly was going on with her, but assured us she was just fighting an infection.  He said her neck was probably just "kinked" from sleeping wrong on it or something.  Jared and I were still very uneasy...nothing made sense and everything seems so coincidental.  But we felt good knowing her spinal tap came back okay.
 We didn't get released from the hospital until around midnight, and the campground was already closed for the night, so we ended up getting a hotel.  It worked out nicely, because after a spinal tap, you must lay completely flat on your back for 12 hours so you don't get the painful headache that follows a spinal tap.  We were able to keep the hotel room dark and let her sleep in and when she woke up, the 12 hours had surpassed and she didn't get a headache.  She was so excited because she would kind of move her neck again too!  She's such a sweetheart, all she wanted to do was eat the hotel breakfast (she's obsessed with hotels and their complimentary breakfasts they serve) and go to the beach!! 

So we headed to the beach for the rest of the day and she seems to be doing okay.  Her neck was getting a little better and her fever broke.  The next day (Sunday) was about the same, she wasn't getting any better, but she wasn't getting any worse either.  Sunday afternoon I noticed she wasn't moving her neck again and we started to become very frustrated.  My mom had been telling me she thought we should call Dr. Jones, my childhood pediatrician in Clovis, who is an amazing doctor.  He's not with Kaiser so we would have to pay $150 our of pocket, but at this point we just wanted a resolution.  I called Dr. Jones at home and he so graciously answered and spoke with me.  He diagnosed her over the phone with aphthous stomatitis and said we should come see him in the morning.  So Jared and my mom drove 4 hours back to Clovis and woke up first thing Monday morning to take her in.  Dr. Jones saw her, had her open her mouth and called Jared over.  He showed Jared all the little sores in the back of her throat.  He was so thorough and was able to properly diagnose her with aphthous stomatitis.  It is basically ulcers/cancer sores in the mouth and back of the throat.  It's not contagious, it's a viral infection and unfortunately, it's recurrent.  She will battle this for at least 2-3 years.  He was able to explain a reason behind every symptom Lily was having:
-It's a viral infection that flares up every 10-15 days...hence why Lily was breaking out in a fever about every 2 weeks.
-It is very painful and so Lily was tightening her neck and shoulders, never relaxing them, that is why she couldn't move her neck.
-she was pale b/c all her white blood cells were going to fight this infection

Dr. Jones explained to us that if the Doctors would have just looked closely into Lily's mouth, they would have clearly seen the sores she had!  I can't believe something so routine and simple was overlooked with her regular pediatrician and 2 ER doctors.   

We went to Kaiser to fill the prescription and because Dr Jones was not a Kaiser doctor, they refused to cover the cost, but willingly took our $83 they charged us to fill it.  What a joke!

He put her on an antibiotic which is working wonders and we have our Lily back!  It's so good to see her coloring come back and hear her singing in the car and see her running around the house.

  I am SO thankful for Dr. Jones.  Medicine is truly a spiritual gift he has.I had tears in my eyes when my mom called to tell me that Dr. Jones didn't charge us the $150 office visit.  That is a good man, may the Lord Bless him.

1 comment:

Jenna said...

What an awful experience for you guys :( I'm so glad you got a good diagnosis finally! And I'm glad Lily is feeling better. Good job trusting your instincts, mama!