Friday, January 4, 2013


While I hate to start the new year out on a somber note, that's pretty much what happened for us -- so that's the way I'm gonna tell it.

At 1:30 AM on New Year's Day, Little Miss had a bad dream. I brought her to our bed and snuggled her in -- and with no more fuss, she settled in and went to sleep.

Looking back, I'm grateful for that bad dream because it brought her next to me. Otherwise, I would have never felt the staccato kicks that woke me at 3:30 that morning.

Something was wrong. I mean Little Miss kicks me in bed all the time -- but those rapid-fire kicks? My spidey sense was all tingly. I fumbled for the light and called for my husband to wake up at the same time.

Little Miss was already mid-seizure. She had been laying on her back and choked on a bit of saliva as the seizure began and we struggled to get her airway open.

Less than a minute later, she relaxed and settled into that comatose after-seizure sleep. Her heart rate was high and thinking something else might be going on, I checked her temp. It was 97.7.

We watched her for a little while, but after assuring ourselves that she just needed rest, I flicked off the light.

At 4:30 we woke to a horrible noise. Little Miss was having another seizure. I ran for the emergency meds and my phone, but the seizure ended before our 3-minute "do or die" meds deadline. This time, Little Miss settled more easily and into a more restful sleep. We figured that the worst was over.

In fact, we got through the next 6 hours pretty well. Little Miss was tired -- but we all were. So we watched Beauty & The Beast and hung out on the sofa.

At 10:30, Little Miss had another seizure. When it ended, we called our parents to let them know what was going on and headed for the ER.

At the ER, we found that Little Miss had spiked a temperature of 102.7. She was given Tylenol and a series of standard tests (blood work, chest x-ray, etc.) to rule out infection. Everything came back negative.

But we still had to collect a urine sample.

Let me just say that this is the part where families who have children on the spectrum along with seizure disorders have it rough. We could not get the sample. And we literally tried everything. I mean, how do you explain to a child who doesn't understand toilet training that you need to collect a urine sample? It just doesn't work.

I won't go into detail, but the sample was collected. And the collection method was definitely our last choice. And the test was run, and we found out that it was all for a urinary tract infection.

A simple, run-of-the-mill, UTI that probably wouldn't have happened if Little Miss could just understand that she needs to learn to use the potty sooner rather than later. Or... if not avoid the UTI entirely -- if we could just get the little phrase "mommy, I don't feel good" and avoid the whole trip to the ER.


We've come a LONG way, baby... but we are already lining up the goals for 2013. Happy new year. At least the medical deductible is out of the way, right?


  1. Poor Little Miss! I hope she feels better.

    Mini Meerkat has had the flu and her fever was spiking to 105 with meds. I was worried she was going to have a seizure, but we made it through. Scary stuff.

    1. Ugh! I HATE when the fever gets that high -- it's like having a little ticking time bomb! I'm glad to hear you made it through OK -- no doubt with lots of cold compresses and ice chips. Happy New Year!

  2. Poor LM!! What a scary start to the New Year. You know, last spring was really the first time Tate started telling us when he legitimately didn't feel it took him until age 6. Even now we have to prompt to get down to the crux of the issue.

    Here's to hoping LM cfeels better soon!

    1. Well, that's encouraging at least. I think this is why I love having the community of other autie parents -- you can give me a little hope for the next stage. Thank you!

  3. Bless her heart and your's too. That all sounds miserable. Every single second of it. =(

  4. Poor Chicken !! Peanuts only ever had one seizer and it was the most frighting thing ever so I really feel for you having to see her go through that.
    Take care of yourselves xx

  5. Poor baby! How scary for you all. I hope she's feeling much better, now!

  6. So, this may seem like a dumb question but I'll ask it anyway. Were the seizures due to the UTI or was it coincidence? I'd definitely feel better if I knew that it was tied to the UTI and not unknown. I'm hoping that is it - period for seizures for the year (and following years...). She looks so vulnerable and pale but just like a sleeping beauty in that photo. She will get to the point where she tells you when something is wrong but the worry just never stops. Big hugs to you missy!

    PS- what happened to Google's spam catcher?! "Man boobs?"

    1. Thanks for the heads up on the spam comments, Karen. I saw them come through but assumed they were automatically filtered. They're gone now.

      We actually just had an update on all this last night -- LM's regular neuro got back from vacation (we had been working with his attending) and decided that since the first of the three seizures definitely was NOT febrile (I took a temp after the seizure was over and it was normal) -- that we should increase LM's maintenance dose of Lamictal. I feel a lot better with the increased coverage, but as always... it's just a "wait and see."