May 17, 2017

My Rare Kid Gets a Rare Muscle Syndrome

I haven't blogged in a week and a half but I have a good reason. Jake was sick. Not just your average run of the mill sick but sick. Warning LONG POST!
It all started Saturday May 6th when Jake was unusually tired. He was not complaining about not feeling well, he just wanted to sleep. Completely out of character for him. I think at one point he stopped what he was doing and said, 'Mom, I just need a nap'. He also didn't have much of an appetite. Then on Sunday he displayed the same behavior. Not really acting sick, just didn't want eat and was really lazy.
 Early Monday morning he woke up with a high fever and cold like symptoms. He said that his head and throat hurt. I stayed home from work with him while he rested. Tuesday morning he work up and still wasn't feeling the greatest but I had to get some work done so I brought him into work with me. He started to complain that his ear was bother him. I decided to bring him into urgent care and sure enough, he had an ear infection. By this time he is in much better spirits and I'm feeling like we might be in the clear. 
Wednesday morning Jake wakes up and can't walk. Of course I think he is being dramatic and wanting to stay home another day. Knowing I HAVE to go to work, I beg him to try to go to school. As he cries in pain, I bribe him with an art project if he can make it through the day. He agrees, because it's an art project and if you know Jake that is his achilles heel. Mind you he is hobbling and complaining about how much his legs hurt. Again, I think he is being dramatic. Not my proudest moment as a parent but how was I to know. 
Throughout the day his special ed teacher was keeping me updated through email how he was doing. He made it to 1 pm when the school called. Jake said that he tried but it hurts so bad he wants to go home. 
After an hour drive from work I arrived at Jake's school. By this point Jake is almost no longer able to walk at all. As I am practically carrying him to the car he says, 'Mom, can I still do my art project? I really tried to make it the whole day'. 
He spent the rest of the day and afternoon on the couch. Only getting up to piggy back ride to the bathroom . I thought to myself that this is the oddest thing and if he still isn't better by the next day I am bringing him to urgent care. 
The next day was worse and Jake couldn't stand and I couldn't touch his calves without him crying from the pain. Urgent care here we come. 
After 3 hours in urgent care they sent us to the ER. 
Jake was in so much pain that they were giving him morphine. When he started barking like a dog and meowing like a cat, the nurse thought he was feeling better. I said, um that is normal behavior for my kid. lol. 

After several hours in the ER(6 to be exact) and lots of blood work it was discovered that Jake had Benign Acute Childhood Myositis a rare muscle syndrome caused by strep. This syndrome causes severe calf pain. Since we were in the ER all day Jake slept comfortably on pain meds and I laid next to him and watched movies. 

The ER doctor contacted Children's hospital of Minneapolis and asked what the course of action should be. Children's hospital wanted him transferred in an ambulance to their hospital to be admitted. I asked if I could drive him because an ambulance ride that far is very costly and he is on pain meds and feeling ok for now. The doctors agree and we packed up and headed to children's. Little did I know that choosing to drive him would be a big mistake. 

When we arrived at Children's hospital I was under the impression that Jake would be admitted right away but because he didn't arrive in the ambulance we were put to the back of the line. 


There was a measles outbreak and then 4 critical cases in a row so we waited 4 hours to get back into the ER. My heart was breaking for Jake because the medicine was wearing off and he was so uncomfortable. By 2 am Jake was admitted and resting comfortably. 


The course of treatment for this rare syndrome is to pump fluids into the body to bring CPK blood enzyme level down to a safe/normal level. When Jake entered the hospital his CPK level was 6500. A normal level for a child is 60-400. Throughout the night and the next day Jake's levels trended down to an acceptable level where he could be released. 


And of course he got to do his art project.



I have major guilt that I didn't give him the benefit of the doubt and was so wrapped up in work that I didn't want to listen to him when he said he was hurting. It was an odd week but I am happy to say Jake is 100%. It came on fast and left just as fast. 

5 comments:

Bethie The Boo said...

What a whirlwind you have just been through. I've been thinking of you and wondering how Jake was doing. I am SO glad to hear he's doing better now. And I get the mom guilt, I would have done the same thing. My son is guilty of using things like "my knee hurts" just to get attention, so I'm sure I'd have told him it was nothing at first too.

And I'm glad he finally got his art project. <3

Beth
http://www.thebethnextdoor.com

Shooting Stars Mag said...

Aw, I'm so sorry to hear this. I'm glad that he's doing much better now, but that's got to have been really scary. Poor guy - I don't want to imagine how much that hurt. As for not believing it was serious at first - how are you to know? It sounds like a typical kid excuse to get out of school. It all worked out well!

Dominique @ Ohbeehave said...

Oh wow, how scary! Jake must be such a brave kid, going through all that, and even trying his best to go to school that day as well! I hope he is feeling so much better now, thank goodness they are able to work out what it was and treat him for it.

Anthea said...

Shame, this week must have been so scary. Glad that Jake is feeling better and the Dr's could find out what was causing the pain and treat him. Hope the rest of your week is calmer and Jake enjoyed his art project.

The Flynnigans said...

Holy crap lady, that's so scary!! Does it reoccur? I guess it can since it can come on with strep throat. Poor kiddo, seeing your child in pain just breaks you into a million pieces.
Try not to be so hard on yourself love, you did the best you could and like you said, how were you to know? Hugs my friend xoxox!

I'm glad Jake finally got to do some arts and crafts. :)