So last week I told everyone about Sadie being sick with some sort of a GI bug. Come to find out the Dr thinks she was in some sort of a "metabolic/mitochondrial crash". I don't really know how she came to this conclusion, but that's what she said. I explained everything that happened, the time period, what we did, and how she responded. Dr. said it sounds more like a "crash" then a GI bug. She said that if she wouldn't have come out of it or if we would have done blood work while she was sick all of her levels that are associated with mitochondrial disease would have been way off. I had a choice to have her blood drawn to see if her levels are back to normal. If they aren't normal then we can see how such a "short lived crash" affects her body by how far off her numbers are. I choose not to have her blood drawn because 1. she is doing much better, still a little off, but better and 2. she has horrible veins. The last time they drew her blood, it took 20 pokes. Ridiculous! I was not with her while this was happening because she was under anesthesia at the time for a procedure. They are lucky she was out and that I wasn't with her or it would have been stopped. So anyways, that is why I didn't have her blood drawn.
So for those that are wondering what a "crash" is, I don't really know. I can tell you what she was doing. It started with her just being fussy, a little gaggy, but she was doing ok with her food. Then she became a little more sleepy, wasn't making eye contact, wasn't doing any of her new skills she's been working on, was becoming increasingly gaggy, wasn't being her normal easy going self. Then she turned to lethargic, couldn't tolerate her food (or pedialyte), no wet /dirty diapers, was very pale and waxey looking, and she was extremely fussy. Lethargic and fussy in the same sentence doesn't really go together, however it was like she was really out of it, but she wasn't comfortable. Make sense? So after this went on for the entire day she calmed down and fell asleep. She slept, and slept, and slept. While she was sleeping I was giving her pedialyte in her g-tube, which she was accepting and not gagging on. So I kept her hydrated while she slept. She slept for 32 hrs straight! It was crazy. She would wake up while I changed her diaper and put her in different positions and then she would fall right back to sleep. After that 32 hrs she woke up and was wide awake, alert, making eye contact, cooing, giggling, and was tolerating her regular formula. It still took her a while to get back into working on her skills and she was pretty stiff, but she came out of that by the next day.
So after that conversation is when the Dr came up with the fact that she thought it was a "metabolic/mitochondrial crash". She said all that going on with no fever and that she popped out of it after the electrolytes (pedialyte) were given does not sound like a GI bug, but a "crash". What?! I've never heard of this and I am an RN. Why didn't anyone (Dr) tell me to look for something like this? So after I got over the fact that I've never heard of this, I asked what I was supposed to do. She replied that next time this happens I need to take her to the hospital and get IV dextrose and a lot of IV vitamins. OK, good to know this now.
So over the weekend I asked my coworkers and googled m/m crash and no one has heard of this. So is this something my Dr made up? Does she just have experience with other kids and this is what works for them? I'm not sure. I did find other parents that have described very similar situations with their children that have a mitochondrial disease and they do call it a mito crash, but there is no official medical articles/journals that describe a "mito crash". After that conversation I felt very guilty about not doing more, but at the same time I brought her out of it on my own and she is doing great (except for the cough). So I decided that there is nothing I can do about it now, and I learned something new about the disease and my daughter. I can only go forward from here.
PS. Another lesson learned from Sadie!
So for those that are wondering what a "crash" is, I don't really know. I can tell you what she was doing. It started with her just being fussy, a little gaggy, but she was doing ok with her food. Then she became a little more sleepy, wasn't making eye contact, wasn't doing any of her new skills she's been working on, was becoming increasingly gaggy, wasn't being her normal easy going self. Then she turned to lethargic, couldn't tolerate her food (or pedialyte), no wet /dirty diapers, was very pale and waxey looking, and she was extremely fussy. Lethargic and fussy in the same sentence doesn't really go together, however it was like she was really out of it, but she wasn't comfortable. Make sense? So after this went on for the entire day she calmed down and fell asleep. She slept, and slept, and slept. While she was sleeping I was giving her pedialyte in her g-tube, which she was accepting and not gagging on. So I kept her hydrated while she slept. She slept for 32 hrs straight! It was crazy. She would wake up while I changed her diaper and put her in different positions and then she would fall right back to sleep. After that 32 hrs she woke up and was wide awake, alert, making eye contact, cooing, giggling, and was tolerating her regular formula. It still took her a while to get back into working on her skills and she was pretty stiff, but she came out of that by the next day.
So after that conversation is when the Dr came up with the fact that she thought it was a "metabolic/mitochondrial crash". She said all that going on with no fever and that she popped out of it after the electrolytes (pedialyte) were given does not sound like a GI bug, but a "crash". What?! I've never heard of this and I am an RN. Why didn't anyone (Dr) tell me to look for something like this? So after I got over the fact that I've never heard of this, I asked what I was supposed to do. She replied that next time this happens I need to take her to the hospital and get IV dextrose and a lot of IV vitamins. OK, good to know this now.
So over the weekend I asked my coworkers and googled m/m crash and no one has heard of this. So is this something my Dr made up? Does she just have experience with other kids and this is what works for them? I'm not sure. I did find other parents that have described very similar situations with their children that have a mitochondrial disease and they do call it a mito crash, but there is no official medical articles/journals that describe a "mito crash". After that conversation I felt very guilty about not doing more, but at the same time I brought her out of it on my own and she is doing great (except for the cough). So I decided that there is nothing I can do about it now, and I learned something new about the disease and my daughter. I can only go forward from here.
PS. Another lesson learned from Sadie!
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