Eye rolling-scared

grbnik

Hi all,

 I have posted on here for about a year and a half about my daughter's eating refusal and speech delay.  However, now something scarier has occurred.  

Last Sunday night, DD was asleep in her crib for about an hour.  She normally thrashes around, as does my DS, so I don't think much of it when she moans in the middle of the night and I hear her moving, because she goes pretty much back to sleep (I was worried at first, but my DH said that I wasn't letting her cry it out, and she was already way past the age to keep getting her).  I should add, she is almost 18 months.  For the last week, she has had a horrible cough, and ran a little temp, and just felt gunky.  Last Sunday, after she was asleep for the hour, I heard her bang her arm (maybe) twice on the crib slats.  That was abnormal, as it was one after another, so I went to check on her.  She jerked a bunch with her arms (not rhymically) and her fingers twitched.  I put my hand on her fingers, but they kept twitching.  They did so every 4-10 secs for a min, then a min off, then would repeat.  Her arms and legs (not together, just independent) thrashed for about 2 hours, then she slept pretty calmly (except for the fingers) for about an hour, then started moving again.  She would also readjust her sleeping position during this.  

So, I looked up myoclonic spasms, felt better about things, and my DH told me I was of course overreacting.  Then, on Monday, she dropped her head slightly, and stared at my husband twice in a row.  We could break her stare, and she just started laughing.  My husband said she was mimicking him, because he did this look to her all the time.  Okay.

THen, Tuesday and Thursday, at dinner, she rolled her eyes twice in a row.  It lasted maybe a second.  On Thursday, it was when I put a bit of frosting on her finger.  She was oriented afterwards, and didn't seem to be affected.  I called our Ped, and she said to keep an eye on things, and if it got worse, she would order an EEG.

Then, Friday, she did the eye rolling thing again, but it wasn't at dinner.  It was afterwards.  She had her bangs in her face, so I didn't know if that caused it or not.  But, normally if something is in her eyes, she rubs at them, not rolls her eyes in the back of her head.  

Saturday, she did it twice at dinner, and finally my DH saw it.  He thought she was rolling her eyes in a circle, I thought she was rolling them back (we were at different angles).  She did it twice again, for about a second, and with a bit of hot dog (the skin was burnt).

Then, today at lunch, she dropped her head and eye rolled about 6-7 times.  I tried to get it on camera, but didn't get the majority.  It seems to be happening in more frequency.  Last night, I googled and found Glucose Transporter Type 1 deficiency, which includes a lot of the symptoms that I see with my daughter:  microcephaly (not diagnosed, but her head hasn't grown in several months, and she is down to the single digits from about 50%), speech issues, sleeping issues and these irregular eye movements.  I am freaking out, for so many reasons.

I called the Ped, and she is going to try to get us in for an EEG tomorrow or Tuesday.  She said a one hour, but I from what I read it really isn't a good reflection to do a one hour test.   I asked about a 24 hour test, so she is going to call neurology and warned me about the sleep deprivation.  Of course, my husband is going out of town for a week for work starting Tuesday, so I have called my dad to come help with my DS.  He is not the typical grandfather, so we will see how this goes.

Please, has anyone else dealt with this?  I am so scared.  It is starting to happen with more frequency.  The sleep is still disrupted, and I just don't know what to do.  I stay awake at night now watching her.  I work full time, and have very little time off left.  I don't want to send her to daycare, because what if they aren't catching it there (they haven't seen anything, but they also have 5 other 18 month olds to watch).

Please, what could this be?  Seizures?  Strep (my husband looked up this possibility)?  Tics? Nothing? I am so scared of what is happening to my baby.

jraustinrdh

I dont have any advice but i will pray pray pray.

birdie_1010

As I was reading your post, the first thing that came to mind was myoclonic sleep spasms.  My also four year old received this diagnosis almost 2 years ago after completing a sleep deprived EEG and ruling our seizures.  As it was disrupting h

grbnik

Thank you both very much.  We are in a horrible state right now, and just awaiting the EEG.