Seizures, seem more like the biggest problem them Hydrocephalus

Kadyn's seizures, although well controlled under Ketogenic diet are no match even with a low grade fever. It seems when his temp goes up his body just can not handle it. It is safe for me to say that Kadyn's seizures scare me more than his Hydrocephalus and shunt does. I honestly would prefer his shunt over seizures. Perhaps this statement comes as a shock to most. As a parent I want my son to be to have the quick, feel better fix, and honestly when his shunt malfunctions he gets that. Although soreness after surgery yes, but headache free and it's all fixed. Seizures take days to heal from. Kind of like a bad chest cold or flu. Seizures are so hard on his brain and take so much from him. It's like watching the life being shook from his body. Let me recap Wednesdays events.

Harvey and I were enjoying after Christmas shopping. Oh, the excitement i got knowing that all these pretty 75% off lights were going to be on my house next Christmas. The chuckle inside me thinking, you know how many paid full price for these, and here I was, practically stealing them! I even got my nephew a birthday gift from the Christmas gift sets! (Insert evil laugh) I love after Christmas shopping. Kadyn of course went with us. He was good the whole time, drinking his bottle, kicking his stroller, stopping to say HII or DADA once in awhile. We leave and drive home and Kadyn is full of noise and just loud. Making me laugh when his Daddy jokingly tells him to stop yelling that we can hear to think. (Whatever that means though lol) So we get home, and Harvey carries Kadyn inside and sets him on the living room floor and goes and grabs our treasures. Kadyn was talking and then all the sudden I hear snoring (clue number 1) I think nothing of it, other than he was just out and he might of just decided he was tired and fell asleep. So Harvey takes his coat off and puts him in his bed, hands him his bottle and we go downstairs and be sure our lights work. Took me maybe 10 minutes and then something was pulling on my heart. I look at Harvey and he goes whats the matter and I just say, something is wrong with Kadyn. Now that I think of it, it was odd that he just passed out like that...so I run upstairs into his bedroom and there I see him, trying to eat but his little arm seizing. I knew it. I yelled down stairs for Harvey and he came up. I laid Kadyn on the living room floor. His seizure had not taken over his whole body so I did what any parent would do. I prayed. I prayed the seizure would not take over his body. I prayed the illness out of him. I prayed my heart out. As I kept asking for the time. 1 minute.....felt like 10 minutes. I waited. As the seizure took over his body. I saw my sons life just being shook right out of him. Asked for the time again, 2 minutes into the seizure, then I think, Only God knows how long he has really been seizing. 3 Minutes, rubbing his back then thinking, oh goodness where is my phone!!! 4 minutes. Get up and start packing his bag, by now the seizure has gotten stronger and has progressed through his whole body. I can't wait any longer. 911 is called. I am calm in explaining what is going on. We just moved, this 911 dispatcher does not know me. He says you are awful calm for your 4 year old to be seizing, and I just say well sir if you have children, my sons seizures are like their scrapped knees, they happen a lot. Now please send me an ambulance. Waiting for the ambulance seems to take forever. I am pacing the floor while Harvey is tending to Kadyn, unsure if my heart if gonna burst while I see the color fade from Kadyn's face. Lips are blue, I blow air at his face, to try and give him a bit more oxygen. The blue fades a bit and I hear the emt in the house. I get up and tell them he needs oxygen and he needs it now. (by the point I have gotten Kadyn in just a tshirt) I grab a blanket throw it over him as emt carry him to the truck. They tell me they need to establish a line to give him Valium. I let them know he can have 2ml but they look it up anyways. Oxygen is established and now to stop the seizure. By now we are 15 minutes into the seizure. Im sitting in the back of an ambulance, watching my new neighbors peak out their doors. (Welcome to the neighborhood?) They look up the dosage to double check, and of course I knew I was right. They get an iv established (surprisingly the first try) and they give him the medication. He slows down but he does not stop. I inform them that he never just stops, that his seizures stop like a train. Slowly but surely they will stop. The Emt decide to give him another 2mls of Valium, even when i asked them not to. Then Kadyn feel in a deep sleep, his o2 stat dropped into the 80's and off to the nearest hospital which is by where I used to live (15 minutes). By then Kadyn's O2 levels were stating at around 92 to 87. Debates on intubating him were thrown around, I asked if we could just try nasal canula first. Thankfully that got his o2 to stay at 94. Then off the Childrens. Another ambulance ride, and still Priority one. Get there and straight to trauma bay. Where his heart rate was in the 200's and o2 dropped again. Thankfully they were able calm him down and get him stable. Asleep he stayed for hours. A deep deep sleep. His pupils were no bigger then a pin head and his snores could be heard through out the er. We were finally put in a regular er room when he could stat 97 on room air. Which only took about an hour.


Thankfully this was all due to a low grade fever, possibly still suffering from last weeks illness. It was possibly too soon to take him out, and it was rough on him. We stay over night at childrens since he had such a rough time with the amount of Valium they gave him. We were sent home early in the morning with instructions to follow up with Neurosurgery in 6 weeks. In which I will not be as Kadyn is getting an MRI later today and I will be following up on Monday with them. Good enough for me!



Pretty much most of Kadyn's seizures are this eventful. It takes a lot of him, but he recovers so quickly. That night when he woke up you could hardly tell besides the paralyzed left arm and leg that he had a seizure. He was moving his right side, smiling and talking and saying hi. He did regain movement on the left side. The paralysis is normal after a seizure of such magnitude.


I can not wait to get this MRI done and over with and hopefully everything goes smoothly!