Ferbral Seizure

Hi ladies,

(Long post, maybe scroll to the 2nd half if you know about blood sugar and/or seizures please)

I posted a few days ago about my 20 month old son having a seizure. It was the scariest thing that had ever happened to us. We were walking out of the front door to get into the car. Headed to plant shop at Home Depot. His dad was holding him. He was holding a balloon. My SO yells, “Babe!!” I look down the drive way, I see my baby. Eyes locked into the sky. Mouth open. Arms convulsing. Body stiff. I run down the driveway, my mind is running so fast.

We start screaming, “call 911.” I think maybe the yarn to the balloon wrapped around his neck so I check his neck. No balloon. I notice he is now purple. I keep telling myself, “no, I can’t let him die today. I have to fix this.” I think he may be choking, so I flip him over and start back blows. No change. I check his breathing again, nothing. So I start mouth to mouth.

After the second breath, I hear him breath. He’s less purple. And a ton of saliva starts pouring out of his mouth. I went to check his air way and notice his teeth are clinched so tight. Instantly, I knew it was a seizure. We have paramedics on the line. Neighbors are surrounding us. My 7 year old daughter is screaming and crying. My 11 year old son is in shock.

I keep my son in his side and rub his back. Talking to him. “It’s ok baby, you’re ok. You got this.” His father is in shock, squatting next to us. Repeating everything I say to the 911 dispatch. My baby was pale lips had some color. Skin was turning pink again. And he was making some noise.

The ambulance and fire dept. arrive. The whole situation felt like slow motion. It felt like it took 10 minutes. But I know it was FAST. I moved fast. The ambulance is literally one street away. They kept pushing “ferebral seizure.”

Now this is my unknown and I’m hoping some one here can share their two sense.

3 days before the seizure, my baby and I both felt under the weather. We both threw up one time that day. I still breastfeed but I’m also pregnant. I know my supply is going way down. He wasn’t as hungry. He wasn’t as thirsty. But he still ate and drank some. Looking back, I feel Horrible for not remembering exactly what he ate. He’s going through this cheese, banana and lunch meat stage. I’m sure he had a ton of those things. But he for sure hasn’t eaten nearly as much as he usually does.

I feel so bad, my milk going down, that being his comfort, him feeling off. He was still running around and playing so I chopped the throwing up to us just eating bad food from Starbucks. We were the only ones in the house who felt that way and also the only ones who had Starbucks that morning.

The next two days were fine. His appetite was still lower. But he was himself. We all

Noticed his eyes looking a little darker underneath. Right before the seizure, he ate some eggs. And was extremely thirsty. He asked me for cup after cup of milk. He never drinks milk. I figured he realized how yummy a cup of cold whole milk can be.

After the seizure, his blood sugar was 35. He also had low potassium levels. They couldn’t find a vein, both feet and one arms veins were blown. They couldn’t get him going on IV meds. So he drank 4 cranberry juices with added sugar through a syringe. And they gave him a shot in his thigh to help. His blood sugar came up to 53. They said it was still very low. We were transferred to the children’s hospital an hour away.

As soon as we get into his room, he has another seizure. We handled this one way better. The nurse asked us to record it which felt so violating and weird but I guess it’s a good thing to do. For timing and identifying which type of seizure is happening.

We fought in the hospital with his blood sugar, For two days. It would jump to 117. And crash down to 50 within 2 hours. He was on an IV glucose drip, EEG monitors, saline drip, and an open diet. He was asleep for about 16 solid hours. Only waking up for 3-5 minutes. He slept through all of the IVs, all of the finger and toe pricks, all of the well checks. It was horrible. But a side effect from the seizure.

Nobody could give us answers. Every doctor had a different theory. His MRI and EEG were perfect. The only thing off was his blood sugar. They told us low blood sugar can cause seizures. But his wasn’t low enough to cause a seizure. But they also told us anything under 70 is concerning. Anything under 50 needs serious attention. His was 35!? He also had one temp read at 99.5 (rectal) when we first arrived to the ER.

They also said that after a seizure, the blood sugar spikes. So after his first seizure it spiked to 35? Or...? Nobody wanted to address the blood sugar. Like at all. Even when it was around 54, 58, 64. They were stressing to get it up fast. Giving him cups of juice, crackers, applesauce, pudding, etc. But nobody could tell us why it was so low, even after eating and having the glucose shot+ drip.

They went straight to wanting him to start seizure medicine.

My questions were, how are we sure he wasn’t one of the few that are effected by low grade fever, how do we know low blood sugar has nothing to do with it, his diet has been off, he hasn’t been drinking as much, and his potassium was low- how do we know that all of those things combined didn’t cause it? I got no answers. Nothing. They wanted to start a spinal tap for infection!!?? He wasn’t showing signs of infection. Can anyone share anything? I’m constantly watching him, debating on how he looks, not letting him explore like before because I’m so worried he will have another seizure and I won’t be there to catch him.