Seizure

Ryan had a seizure yesterday. It was a bad day. 

I went in to get the boys around 7:30 AM like I usually do. Ryan was still sleeping, which is rare, but not totally unheard of. I went ahead and got Stokes and William up and changed to let Ryan sleep just a little bit longer, in case he was still tired. I did think it was a little unusual that he wasn't stirring, even though we were making plenty of noise. 

After I was done with Stokes and William, I went to Ryan's crib to wake him up and his legs were shaking a little. I chalked it up to stretching and muscle contractions when just waking up, but thought that it was a little weird. Then when he opened his eyes, he wasn't really making eye contact. I picked him up and took him to the changing table and he still wasn't tracking or looking at me. He only had his eyes looking to the side, as if he was totally focused on something. He didn't do any more shaking, but seemed really stiff. I just kept remembering what Dr. Taft had told us - we may not know exactly how the seizure will present, but it will make the hairs on the back of your neck stand up. Ryan's behaviors and positioning were just NOT normal and I could tell something was wrong. Luckily, Thomas hadn't left for work yet when this was happening so I called him in to see Ryan. He agreed that something was going wrong and we both agreed that I would call Neurology and talk to them and keep him informed. He left shortly after that for work.

I got the boys downstairs and fed Stokes and William breakfast. I read somewhere that you should not put any food or anything into the mouth of someone having a seizure, so I just held Ryan. I didn't know whether he was still having the seizure, or if that was even what it was in the first place. I wasn't sure if I should go to the ER. I was feeling totally lost. He fell back asleep almost immediately when I was holding him. Once Layla got there around 8:30, I immediately started crying telling her what we had seen from him and my concerns. At that point, I was still waiting on a call back from Neurology so I didn't totally know what to do. I got a call from Thomas and he said he was just too worried to be at the office and was getting his laptop and coming back home to work from the house to keep an eye on Ryan. 

Of all days, I had a huge meeting downtown. Executives from my company and my vendor's company had flown in for this meeting and I felt like I needed to be there - and was feeling torn. I was actually supposed to be downtown by 9:30 to host a few people for coffee and walk around downtown a little before the meeting started at 11, but I had to let them know I couldn't make it before 11. 

Thomas came back home and we took Ryan to our room and just held him and let him sleep. When the nurse from Neurology called back (we had called again in the meantime, trying to get some answers), she asked me what was going on, said that Dr. Taft would be calling us, and said we didn't need to take him to the ER and that everything was OK. Dr. Taft called about 15 minutes later and I once again described our morning to him. He agreed that it was probably a seizure and said it is very common for kids to sleep after the seizure and just to let him rest. He said he couldn't be sure that I had seen some of the actual seizure or whether I only saw the aftermath. He decided to up up Ryan's medicine dosage to try to prevent any future seizures. He told me to call him back if I saw any other seizure activity. We will keep our regularly scheduled check up appointment with him but did not have to schedule another appointment to come in sooner than that. 

We had been warned that due to Ryan's Pachygyria, he was most likely going to have seizures. We knew it was probably coming at some point. Just knowing that did not make the blow any easier to take. Thomas and I were both so worried about him all day. 

A little while after speaking with Dr. Taft, Ryan woke up and was focusing on me. He wasn't quite his usual happy self, but seemed to be more normal. 

I ended up going to my meeting, and felt OK about it since Thomas was going to be there with him all day. I told Thomas to let me know if anything else happened and told a few people in the meeting about our morning so that they could cover for me if I needed to leave suddenly. They were very understanding and encouraged me to go ahead and leave, but I felt obligated to stay and I knew there wasn't much I could do for Ryan at home. I knew Thomas was keeping a good eye on him and taking excellent care of him. MaSha also ended up coming over to help out and just provide an extra set of hands and emotional support. 

Thomas provided me with text updates throughout the day so I could have some peace of mind. 

Ryan slept a lot, and when he was awake he was a little grumpy.

Thomas holding Ryan right before I left for my meeting

Awake but not feeling totally himself

Poor little guy was pitiful - very sleepy and not feeling great.

Around 10:45 AM

I got a text in the afternoon that he had a fever (101.9) so Thomas called the pediatrician and they let Thomas give him some Tylenol to help.

sleeping peacefully

Thomas ended up having to give him a suppository in the afternoon and it didn't take long for him to have 2 dirty diapers. He must have felt a lot better after that because this is the picture I got!

Finally feeling a little better

Thomas said Ryan pretty much only ate apple sauce and bananas yesterday - would hardly eat any dinner or drink his water or milk. I have no idea what it actually feels like, but judging on Ryan's demeanor yesterday, I would equate the aftermath of a seizure to probably feeling hung over.

It's interesting that he had a fever yesterday and was a bit constipated. Each of those on their own can cause seizures. We try to limit his constipation by giving him stool softener daily and sometimes probiotics, as well as prunes and fiber-rich foods, when we notice he hasn't gone in a while. Dr. Taft warned us about that a while ago, and every so often it will be a few days in between movements for Ryan. I wonder if it was the combination of constipation plus the fever that caused his seizure. We may never know the answer, but can at least do what we need to do to keep his bowels moving.

Today is Friday and he seems to be completely back to normal today. He has his PT appointment this morning and it did not appear that he had regressed at all from a PT standpoint. I was really worried about this since he's been making such great progress lately, and we couldn't tell yesterday since he was so tired and not feeling great.

I hope and pray that this new medicine regiment will prevent any more seizures. If another happens, we will try a different medicine dosage, brand or combination or whatever else our Neurologist suggests to try to treat him the best way possible.

I worry about my sweet Ryan all the time, but yesterday was really scary. This was his first real seizure since we got his infantile spasms under control over a year ago.