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Default May 26, 2020 at 08:34 PM
  #1
My poor 15mo old is going to be tested for a possible seizure disorder. I'm feeling torn that this wasn't done a year ago! There's so many different types of seizures and symptoms, we honestly thought it was her quirky way of falling asleep. We're thinking maybe Infantile Spasms or Absent Seizures.. but it could also be dystonia. I'm crossing my fingers and toes it's just a quirky behaviour but unlikely. Her uncle and grandfather have grand mal seizures and have been medicated for life. Her uncle outgrew it as a child.

Gee, when it rains, it pours!

Since Covid19 began, there's been 2 (non-related) deaths in my family.. I've realized I'm in an abusive relationship.. my in-laws were in a serious car accident.. my special needs adult son is bored out of his mind because his workers have been in quarantine.. my daughter had Roseola.. my grandfather celebrated his 102nd bday without his family.. and my anxieties have been on high.

What's next??
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Default May 26, 2020 at 10:44 PM
  #2
Wow that sounds like a big load to handle. I’m so sorry you’ve had to go through this at all, especially during the quarantine.
Take it one day at a time. That’s all some of us can do.
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Default May 27, 2020 at 12:41 AM
  #3
Quote:
Originally Posted by lady411 View Post
Wow that sounds like a big load to handle. I’m so sorry you’ve had to go through this at all, especially during the quarantine.
Take it one day at a time. That’s all some of us can do.
Thank you so much. That really means a lot to me!
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Default May 27, 2020 at 11:43 AM
  #4
It does sometimes seem like when it rains it pours! I will keep you and your daughter in my thoughts today. You are not alone. Sending you a hug, too.
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Default May 27, 2020 at 12:21 PM
  #5
I’m sorry a lot for what you and family is going through. Hope the test for your daughter to be as less grave as possible. Thanks god, she has a mother who cares a lot about her.

All the best for her and you!

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Default May 27, 2020 at 12:42 PM
  #6
I hope your daughter gets the right treatment if in fact test shows what you suspect. Thinking about you and your little one
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Default May 27, 2020 at 08:27 PM
  #7
We took her to emergency the other day. I was hoping they could run an EEG right away since seizures are in the blood line. It was the weekend and EEG was closed. The appointment is set for next Monday with a follow up app with her new ped doctor.

What we're seeing is her contracting her arm/leg/torso muscles, prior to her falling asleep. We initially thought this was her self-soothing way of falling asleep. She's been doing this several times per day since she was about 5mo old? It's kind of cute.. and never did it occur to me that it could be medically related.

When I research symptoms, all that comes up is Infantile Spasms, Myoclonus Seizures, Absent Seizures, and Dystonia. I've suspected my partner has facial dystonia (although it could be due to years of drug use prior to our relationship) and I've mentioned already about the seizure blood line.

Then last night, I came across a forum, NetMums, who talk a lot about these exact behaviours their children exhibit, and only when in a highchair, carseat, and stroller. Many of them had a series of tests done that came back clean. A couple of them said their doctor called it "self-gratification".. a soothing behaviour their child enjoys and will grow out of. I'm starting to think this is it, afterall. I am so relieved but will still go ahead with the upcoming EEG. We've been documenting and taking videos.

Our daughter only does this in a carseat, stroller, and highchair, too. The concern was triggered when her face started going red and the behaviours escalated to mealtimes (oppose to just prior to sleep). She also just started raising her arms above her head (twice) which is a symptom of Infantile Spasms. Other than this though, she's developing really well. I'd say her gross motor and language development is even advanced, which contradicts IS.

I'm not a Hyperchondriac. I'm usually pretty good at ruling things out and don't get overwhelmed with Google searches.

I'm really hopeful that it's just a self-soothing behaviour which is apparently quite common. I have 3 children and 12 nieces/nephews. I've NEVER seen this behaviour before and it was really hard to find information about it.

I'll update this post once I know more from the doctor.

Thank you for your support!
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Default May 28, 2020 at 07:02 PM
  #8
Oh man, that IS a lot to handle at once. I really feel for you. Yes, one day at a time. One step at a time.

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Default May 29, 2020 at 01:01 AM
  #9
Thinking about you and your little one
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Default May 29, 2020 at 11:23 AM
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Default May 29, 2020 at 04:07 PM
  #11
Thank you everyone!
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Default May 29, 2020 at 09:38 PM
  #12
Of course I received a voicemail tonight saying the EEG on Monday had to be cancelled and rebooked... (sigh)
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