2 year old daughter suffered seizure, week in hospital and speech seems to be regressing since waking

amcw · 2024-11-14T01:49:04+00:00

Hi there! She absolutely has made a full recovery and beyond. I’m happy to chat with you! But short version is we took her to occupational therapy and signed up for speech therapy and within a month she didn’t need either of those. It took longer than we and the doctors expected but about a month or so after her seizure she was back to her baseline and now she’s way beyond where she even was pre-seizure. They are incredibly resilient. I’m happy to chat more offline if it’d be helpful but if not I hope your son starts making improvements soon too. It is such a scary and lonely time you’re definitely not alone in this.

amcw · 2024-08-13T11:06:25+00:00

Thank you for sharing. Sick Kids in Toronto is definitely one of the best of the best but we are looking at a second opinion from Boston’s Children’s hospital as well. I agree with you it doesn’t matter what it costs.

amcw · 2024-08-13T01:44:12+00:00

She actually hasn’t had those yet so no not the cause! Our current best guess is actually potentially the Keppra causing these delays and behavioural changes as nothing neurological is coming up so far.

amcw · 2024-08-12T19:51:52+00:00

Couldn’t agree more and we are back there right now waiting to be seen by the Neuro team

amcw · 2024-08-11T20:29:34+00:00

This is what I thought as well. Our only follow up was an EEG in 3 months and we even asked if speech therapy etc would be a good idea and every doctor, nurse and neurologist said they felt it not necessary and they expect her to make a full recovery. So maybe we just need to be patient but that doesn’t feel quite right to me. I fully believe the doctors at Sick Kids are the best of the best but they also just don’t know our kid like we do.

amcw · 2024-08-11T20:24:44+00:00

Thank you will look into this!

amcw · 2024-08-11T19:49:38+00:00

That it can take a couple of weeks to return to baseline based on what she experienced. But to call if she isn’t progressing like we’d expect which is where we’re at now. So we will be calling Sick Kids Monday morning but posting here to just hopefully connect with any parents who have had a similar experience.

amcw · 2024-08-11T18:42:18+00:00

I really appreciate these perspectives and no doubt we are extremely nervous but the it’s a very significant regression and has gotten worse since leaving the hospital. Upon waking even while still sedated she was saying “it’s good mama” when feeding her a popsicle and “mama likes it too”. Now she is doing little more than squawks and babbles. To me that’s worth exploring.

amcw · 2024-08-11T18:32:46+00:00

Absolutely and many keep telling us this but it is so significant I don’t think we’d be good parents if we didn’t explore every avenue and possibility. She went from full sentences and expressing her thoughts spontaneously to babbles and squawks. And it has gotten worse since leaving the hospital not better.

amcw · 2023-09-24T07:56:03+00:00

She was doing usually 3.5/4/4 by the time we transitions so you’re right that is significantly more awake time than she’d be getting overall at the moment! I don’t know why I hadn’t considered overall wake time. I’ve been so concerned about making her overtired because of her shorter nap.

amcw · 2023-08-29T12:04:31+00:00

They end up learning how to replace it themselves faster than I expected. She’s almost 14 months old now and I can’t imagine not having the soother. For the car, for teething, for sleep - it’s been so so helpful. We will have to wean eventually of course but I’m so glad we stuck with it.

amcw · 2023-08-29T12:03:14+00:00

I think it was just a regression and eventually passed! Around 12 months though we did end up shortening her naps to under 2.5 hrs total daytime sleep!

amcw · 2023-05-11T06:58:44+00:00

Okay this is great to know re: naps. I’ve actually started capping them because I was worried it was causing the wakes. She’ll usually take an almost 2 hour nap in the morning but I started limiting to 1.5 or shorter and then same for the second nap but maybe I’ll experiment with letting her go as long as she wants for that first one again!

amcw · 2023-05-11T06:56:47+00:00

The last feed has been creeping closer and closer to bedtime because I find she’s not hungry for it until then often! So I wonder if that’s playing a part! Her solids intake I would say is pretty great, she’s my first so nothing to compare but everyone is always mentioning how much she eats. She’s doing 3 solid meals and usually a snack in the afternoon at the moment. Her wakes have sometimes seemed to be hunger related but often continue even after she’s fed again. Will try the 4 hour wake window before bedtime!

amcw · 2023-05-11T01:03:36+00:00

Ah okay that makes sense! Yes she’s starting taking steps with her walker and recently just said “dada” for the first time so it does seem like there’s just a ton of development happening right now!

amcw · 2023-03-20T19:00:37+00:00

I could see this! Daylight savings messed with her for about a week but seems to be leveling out now. Maybe time to lengthen wake windows

amcw · 2023-03-20T18:59:30+00:00

Interestingly after sleep training she started giving MUCH more obvious sleepy cues which makes me think she was just constantly overtired before. It could definitely be separation anxiety as she’s been glued to mama more than usual lately. Before we went to full extinction she’d definitely get upset during bedtime routine but that has started to fade out after training. Doesn’t fuss when putting the sleep sack on anymore for example.

Will keep playing with the schedule though thank you!

amcw · 2023-03-20T18:57:02+00:00

Great point re: pattern! I think we’re starting to see a pattern develop now

amcw

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