Wednesday, January 26, 2011

{Benign acute myositis}

*Check out that post title. I had some other names for the post title today but thought it best to keep it with the scientific name for those who will inevitably be searching the internet (like I was) so they can find this site and get more info. A thorough description of what happened will be given as well for those wanting more information*Ella woke up yesterday morning crying in pain and telling us she couldn't walk.

Let me back up to earlier that morning, around 3 A.M. to be exact, when we woke to Ella screaming in her room. We found her in the middle of her room crying in pain and saying she couldn't walk but needed to go to the bathroom.

We thought she had experienced a leg cramp or perhaps both her legs were asleep. We calmed her down, took her to the bathroom, put her back in bed and she went back to sleep.

In the morning I woke up curious to see if she could walk. Not wanting to draw attention to her legs (didn't want to remind her) I asked her to get up and get ready for school. As soon as she attempted to stand she fell down, screaming in pain (and scared I'm sure) saying she couldn't walk.

That's when we began to worry.

We called her doctor and spoke to the in service nurse, who got a hold of our pediatrician who indicated to bring her in ASAP.

After a long morning of evaluations and blood work we were able to come home (thank you to our friend who watched our kids). The blood work results were completed in the afternoon and all tests proved normal except for an significantly high level of Creatine Kinsase which told of severe inflammation of her muscle tissue. This made sense since her legs were painful to the touch in her calf muscles.

The doctor diagnosed her condition as Benign acute myositis.

"Benign acute myositis. In benign acute myositis, a young child suddenly develops severe leg pain and cannot walk normally. These symptoms are dramatic and frightening, but they usually disappear within a few days. Benign acute myositis usually occurs in children who are recovering from the flu or some other respiratory infection caused by a virus. Doctors are not sure whether the child's muscle symptoms are caused by the virus itself or by the body's immune reaction to the virus."

This made sense since she was getting over an upper respiratory cold. We were somewhat relieved that we now knew what she had and could go from there.

The doctor had set up a room in the pediatric unit of the hospital last night for Ella. She wanted Ella's system to be flushed with IV fluids overnight hoping that would help rid of the protein build up and help dissipate the build up of the virus.

When Ella heard she would have to go to the hospital and get more needle pokes she was not happy (earlier that day when doing blood work they had to fish around for a vein and poked her 3 times = not fun. Even the old lady getting labs done next to us was crying along with Ella because she felt so bad for the kid. Ella kept repeating through tears "This is not fun. This is not fun". When the nurse finally finished getting all the blood she needed she told Ella "All better!" to which Ella tearily asked "I can walk?!!". Perhaps the phrase "All better" would've been best to use).

Hearing that more needles and a night at the hospital was waiting for her she got up and took a few steps before she fell again...which actually was a marked improvement from the beginning of the day. We asked the doctor if there was any way we could keep her home, of course giving her fluids and monitor her from here. She contacted Loma Linda Pediatric ICU - they have seen more cases of this - and they said because her levels weren't in the 10000's and she had taken a few steps we could keep her home.

We were to give her fluids and monitor her urine. If her urine was brownish in tint we would have to take her to the ER because her kidneys were failing.After a long night of pushing fluids and bathroom visits Ella woke this morning and is able to walk a bit. She's unbalanced and still in pain but way better than yesterday for sure!

Today more labs will be done to check her CK levels. She should be walking much better by the weekend.

I will admit it was a bit scary seeing my child in that much pain and not be able to walk. It's crazy how our bodies try and defend the nasty viruses out there in the world.

I am so grateful for modern medicine that allows things like this to be identified and treated. I kept imagining what it would've been like before they knew what this condition was...it would've been much worse.

Ella is otherwise happy and bored. She's very VERY sad that she is missing school...her favorite place to be.

My arms are sore and hopefully getting a bit more toned.

29 comments:

Debbi said...

Gosh! I am crying just reading this, I have been so worried for you guys! I am glad she didn't have to stay at the hospital last night! I wish we could do more for you! Give little Ella (and YOU!!) a big hug from all of us, we are very concerned!!! We are praying for you guys like crazy.

Ginna said...

Oh Erica, how scary! How glad I am to hear that she's ok. I would've been so frightened. And spending time in the pediatric units of hospitals isn't much fun.
Our little guy had an elevated reading on one of his newborn screening tests and I had to take him in for some tests. It was pretty awful and scary. Turned out well for us and I'm so glad it's turning out well for you. I hope she bounces back soon. What a sweetheart.

Kalli Ko said...

yikes so scary! Glad she seems to be feeling better.

Ginnie Coleman said...

I am so sorry Erica...I cannot imagine the scenarios that were running through your head! I will keep Ella in my prayers for a continued recovery.

Pattersons said...

oh ella!!! poor baby girl...i'm so sorry she's experiencing this pain...and missing her favorite place to be:) please let me know if we can help with anything. and tell ella we're thinking of her and she's in our prayers:)

Anonymous said...

My friend had that when he was young. It happened every time after he got a bad cold. It stopped in his teens. And he his now 26 and fine and active. Poor Ella.

The Chick said...

I totally had this as a kid. I think I was maybe 13 or 14 but it felt like I worked out my calf muscles SO much that they were sore and I couldn't walk. My doctor chalked it up to a codeine allergy (I had been taking it because I was sick) he gave me a steroid shot and I could walk the next day with a little bit of soreness. I haven't had it since, but I have been avoiding codeine (as i've proven to be allergic to other pain meds as well, vicodin). So keep an eye out for that just in case. My doctor could've mis-diagnosed me all those years ago but like I said, I haven't had it since and turned out just fine :) Hope she feels better soon!

Melanie said...

Poor Ella and poor Mommy. Sounds terrifying!

J and C Stubblefield said...

best wishes to ella...and you all. I am so glad you know what it is, and everything can get better soon.

banananutmeg said...

:( hope she gets well soon! So frightening!

hays said...

What troopers the two of you are! Sending you all well wishes!

The Perry Family said...

Oh my gosh!! Hope she has a speedy recovery and will definately be praying for you guys!

Meg said...

That must have been so scary!! Glad she seems to be doing better!

Andrea said...

That is so bizarre! I have never heard of that before! Thankfully she will be feeling much better sooner than later I hope. That is really cute that she misses being at school. Well wishes sent your way :)

PS: On a totally different side note, I am actually really liking the Bachelor this season. Some of the girls are a but wacky, but I really like Brad the 2nd time around.

Cristy said...

Erica!!!! That is so crazy and sad! I can't even think too long about that crazy old nurse poking that poor child that many times without starting to get very angry. GRRRRRRRR!!!!! Jim just called and told me the details of your chat. So scary! We will keep you all and of course Ella at the forefront of our prayers. Love to you all. xoxo

Karin said...

Poor thing! And poor mom, too. That would have scared me to death. Hope she's as good as new very soon. We'll be praying for her!

Mayday said...

Poor thing! I hope it goes away quickly, I can't even imagine that happening. What a crazy thing. Good luck Ella!

Cassie and Mitch said...

so sad! poor ella, i bet she was terrified! glad she is getting better

Lisa and Rustin said...

Oh my goodness!! What a trooper...or should I say trooperS!
AMEN for modern medicine. So glad you are back at home and on the mend!

Leilani G said...

Poor sweet Ella...I can't imagine how scary that would be for her as well as you and Bret. I'm so glad she will be ok. It sounds like she was so brave when getting her blood drawn.

Allison said...

So sorry for sweet Ella. I saw on facebook she is feeling better. I hope that continues and she can return to school (since it's her favorite place) soon! :)

Sarah said...

Erica!!! Oh my goodness! I can't even imagine how scared you must have been at Ella not being able to walk. I am so glad that it's something she'll recover from quickly. I am so sorry about all the terrible blood draws, there is nothing worse than seeing your child in pain. I hope this all passes ASAP! You will definitely be in our thoughts and prayers. Love and hugs to you both!!

Jessie said...

Poor girl! That is so scary! I am glad that she is starting to feel better! I have never even heard of that before!

Hope she's back to her normal self soon!

and yes, modern medicine is fantastic!

Slice of life said...

Been away in Scotland, no internet access there. So I have only just read this.

We are both beaming "get better soon, Ella!" vibes from England.

Hope all are feeling better and you have a good weekend to make up for it!

Bethany said...

Thank you for your blog post. We had a similar wake up from our 7 year old son this morning when he couldn't make it to the bathroom. Very scary when you get past telling them their legs probably just fell asleep from sleeping funny and you realize it's something more.

We're waiting on a call back from the doctor... hoping we can avoid the needles. It was good to know that it is a possiblity but home care is too. Thank you.

Anonymous said...

Is there something that can be done to prevent this? Or is this something that we will have to deal with every time she gets a virus? My little one had it last November for the first time at 3 yrs old. Here we are again at age 4 going thru it again.

Definitely scary to go thru not to mention frustrating not being able to make your little one better. :-(

veena bhashyam said...

Oh my god! We are going through exactly same situation . It's my son who is 5 years old . Your post got me so much relief . I am so terrified and scared seeing my son suffering in pain . Thanks for writing your experience it gave me so much courage to face this situation .

Anonymous said...

My daughter went through this exact same situation 6 months ago...and again on Halloween! Did your daughter ever experience it more than this time?

Anonymous said...

My 10-year old son was just released from the hospital yesterday after having been admitted for the night. It was his second time experiencing this...he was five the last time. My daughter also was hospitalized for it five years ago and her condition led to kidney failure. Scariest three days of my life. I am happy that your daughter is fine.