A mom with questions

[Msimpson]

My son is almost three years old. Within the last few months he has been observed having anything from a slight hand tremor to his entire body shaking. He has had episodes where he will wake up at night or from a nap crying uncontrollably and nothing we do will soothe him. After 30-45 minutes he will eventually calm down and be fine. We recently saw a neurologist who suspects he may be having some type of seizure, but his EEG came back normal. He is speech delayed so when he wakes up crying in the night he can't tell me what is wrong. He is typically a very happy easy going child. Is this behavior typical after a seizure? This is all new territory for me so any feedback is appreciated.

 

[RockerMama]

Has he had a sleep study yet? That is my first recommendation if he has episodes during sleep.

Has he had any blood work done? Low iron can cause tremors, mild to extreme.

I have an almost three year old who has Sensory Processing Disorder(which caused speech delays until we figured it out), and moderate to severe sleep apnea. He will wake up SCREAMING, shaking, and unresponsive. The apnea jolts him awake, but he isn't really awake.

I am so not knowledgeable about all things seizures, though there are some wonderful people here.

I hope you can get it figured out!

 

[Msimpson]

He has not had anything done other than the EEG. The neurologist isn't ready to put him through a lot of tests just yet. She wants us to monitor him for 3 months and keep a log of anything that we see. We will follow up with her in June. It is just difficult not knowing what is wrong and he can't tell me.

 

[donnajane]

My 15month old has something called "shudder syndrome". He was shaking 150+times a day. Sometimes it was his arms going stiff and shaking fasts, other times his arms would shake and his eyes open wide and neck go stick and other times he would arch back while shaking etc. He would often wake himself up doing this. It started when he was around 7months. He episodes have now decreased to hardly any somedays but sometimes he still has large clusters. He also has developed a few other weird and wonderful quirks. He had 4 clear EEG's and his 5th around a month ago came back with a slight slowing on the back right side of his brain and this time they also were able to capture his eyes rolling back when they used the flashing lights. He is slightly slower developmentally but given what he's had going on I think he's a champion. His Nureo has booked him in for an MRI in July and he also has an appointment with the Genetcis centre, at the children's hospital to look into if a Metabolic disorder is causing what is happening to him. (Shudder Syndrome is only a small part of his symptoms.) When I googled what Shudder Syndrome says it sounds so minor but when you see my son doing it it doesn't look very minor. The Nureologist at the Childrens Hosptial even asked if he could use the footage of my sons "events" to show at a conference as he'd never seen such good footage of "shudder syndrome"! My sons is not on Meds at this stage yet we were given a script several months ago by the Nureologist he is now seeing just in case he needs it. We are not to fill it though unless Nureo either rings us or emails us to do so.
I hope you find some answers soon. Re your log yes they are helpful but for us vidoe has been great as the Nureo has been able to see his eyes during his events and as he says for him the eyes hold the key in helping him work out what type of event it is.
Donnajane.