We wanted to say thank you. For all your thoughts, prayers, love and support.

We also wanted to say thank you for sharing some of the most intimate details of your care or your children’s care. We received so many messages with so much helpful advice from triggers, to doses, to medical chart tracking and symptom tracking. Tools I had no idea existed.

THIS is what community is about. Where we can all support each other, learn from each other, lean on each other. Help each other.

It’s never easy to go through these things. Tatums diabetes was the same thing. I relied on so much help from social media. Now I try to support and help other T1D families and I try to help special needs families with what I do know.

Dustin and I make the very best team but even better bc of all of you. Thank you! 💙

I have not publicly shared this bc I wanted to get answers with out opinions first.
However, I feel like my community is such a wide variety of people and it includes some amazing special needs families that I would like to open up and ask some questions.

In January, Landon cried during the flu. We have not seen him cry since 2014. Didn’t think much about it, maybe he is getting more emotional, aging, etc.
He did it again in March. The spells started getting closer and closer and a pattern was established that it was during a shower. His Dr ruled it “shower induced seizures”.
We upped his meds and his last one was May 8.
Thinking all was well, we were surprised to find last week he had 2 convulsing seizures in a week. We upped his meds two more times.
Yesterday he had another shower crying spell for an hour. After essentially 2.5 months with out one.

I reached out to a couple of my friends who are epileptic. And his Dr told us today that each case Is different. But apparently this is super rare and his seem to be inconsistent and as she called it “untriggered”.

I’m so confused about this. We only get 30 min at a time with the Dr and i have so many questions.

Has anyone experienced this? The shower seizures, the crying, the unrelated seizures?
Does anyone have anything to offer me?

I will say, he is on a super low dose which we will be upping. They gave him a whole new protocol. So I’m not asking for any medicine related advice.

Just triggers, to see if I can find something I’m not thinking about or missing.
And even if you have nothing to offer, please pray for him. Landon has been super healthy. We are doing everything we can to manage, understand and treat.
And say a little prayer for my husband. It never gets easier to watch your child go through things out of our control.