I thought we had dodged this bullet

I thought Ryan was "too old" now to develop seizures.

I may have been wrong

2 days ago Ryan came home from school and his bus driver and aide thought he had had a seizure. They found him unresponsive and shaking. He didn't come around for 3-4 mins. I called his doctor and she wanted me to bring him straight to the ER. To check for things that might have caused a seizure ......... dehydration, infection etc. He hasn't been sick recently but had been upset at school all week which is very unlike him. Had he been feeling unwell and we hadn't known? Dam you GATAD2B for making my child non verbal!

After a long wait in the Belfast Royal Childrens Hospital ER we saw the consultant and learnt he didn't have a fever and all his labs looked normal. We took him home and were told to follow up with his pediatrician.

Seizures scare me. I've seen how they can be uncontrollable. I've seen how they can rob a child of their current skills and warrant medicine that can slow or stop the acquisition of new skills. I've seen how they can take a childs life!

I thought we had dodged this bullet

I thought seizures were not known to be related to Ryan's gene mutation, but through Facebook have found out that 5 of the known 20 GATAD2B kids have had seizures.

That's 1 in 4


Not great odds after all

We will know more after we see the neurologist and have an EEG.


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