This Sucks!

So Rylan was almost seizure free a MONTH! On Dec. 22nd would have been a month without a seizure, but then he had one on the night of the 21st (so close!) and ever since he has been having them. And now he has developed a new type it seems. . .
Yesterday we dropped him off at our babysitters (which is my hubby's cousin) and she sat him at the kitchen table to eat breakfast she heard him start crying and went to check on him he was gripping the high chair arm so tight she had to pry his hands off the high chair and when she got him out and picked him up he was so stiff he was still in the sitting position. I called his neuro and the nurse said it definitely sounds like a seizure :( I am so bummed right now, i was hoping his seizures wouldn't change at all. Please keep my little man in your thoughts and prayers, he has been dealing with a lot lately.

EEG and Seizure Activity?

Rylan just had his second EEG and he did not take it well at all! He was good up until we had to leave and the whole ride up there all he wanted to do was sleep :( so i had to keep waking him up and he would get so upset with me. He tried to hit me a couple of times, but wasn't successful. Then when we got there he was okay up until we had to hold him so they could get the electrodes on his head (which was alot). He got so upset that when it was time for him to go to sleep he had a hard time. At one point he was messing with the electrodes on his head so she had to wrap him up in a blanket so his arms were in the blanket and then he fell right asleep. I think he just wanted to cuddle. We did all that and his results came out normal which is good, just wishing we had more of an answer to his issues :/ 

I have been asking around and it seems that his eye rolling when he gets water in them is not normal for most. I have not talked to the neuro about this yet, but will the next time i call up there. I also have a video of him having a CPS with hand movement too that i want to email to them and have them check it out. 

Good News is: He hasn't had a seizure for 8 days now! :) But, i'm not sure if i am reading to much into this, sometimes he has weird breathing when he is sleeping (which i noticed the day of his eeg when we got home) and he has been having a lot of saliva in his mouth, last night it just kept coming out, and i am not sure what to think of it, because he also fell asleep for a few minutes at 8 o' clock and that was not like him. I am hoping it wasn't seizure activity, because before he fell asleep he was acting weird a few minutes before. I couldn't get him to stay straight up he was kind of acting like a drunk person, and he kept falling down to the ground. 

Well for now that is all the update i have on my baby boy ♥

Updates

I last posted about Rylan's doctor appointment and how they upped his medication to 7.5ml twice a day. I have been noticing a pattern with upped meds. . .it works for about a couple of weeks and then they start slowly coming back! I hate it. It's not affecting him to bad right now, but if we don't get this under control it could affect his learning :/ I don't want to see him struggling through school. It just breaks my heart. This may be because he is only two years old but sometimes he is so tired all he wants to do is sleep, i am really hoping he outgrows that stage because he can't be sleeping in school when he gets school aged. I am planning on putting him in preschool when he is 3-4 years old, hoping that helps him. 

He is also scheduled for another sleep deprived EEG for Monday morning at 10:45 a.m. I was hoping for a longer one so we have a better chance at catching one but for now i will take what i can get for my little man. He apparently may be having them at night while he is sleeping. My mother in law had him over night one night she seen him have one. His eyes opened and he was staring then his eyes started rolling back, and then he fell back asleep. I just want real answers. I am tired of not knowing if these are really seizures or not because now the neuro has put doubts in my head. He is pretty positive these are seizures but there is still that doubt lingering there. 

It sucks to see your child not be there :( Every time he has one my heart stops. I am calm on the outside and freaking out on the inside and it is just a horrible feeling to have. No child should have to go through this. But i do have a lot to be thankful for. It could be a lot worse.

I am not to happy at the moment. More confused than anything, but needless to say i am getting Rylan a 2nd opinion if it's the last thing I do. If a doctor is not sure about their diagnosis then they shouldn't diagnose someone and then treat them until they know for sure, especially with a child!! I took Rylan to his check up with the neuro, and after seeing a video i emailed to him he said it was hard to say whether or not that these are actually seizures. But he is keeping him on the meds and still not doing an eeg unless he has more after the upped meds. That is NOT good enough for my son! I want a doctor who is pro-active in my son's health care, not someone who THINKS they know what it is. I want them to be 100% sure of the diagnosis before they mess my son up with meds and the side effects. GRRRR!

. . .and another seizure. . .

Rylan hasn't had a seizure since Sunday Oct. 2, 2011. I normally do not let Rylan cry his self to sleep for that very reason, that he could go into one and i knew i should have listened to my gut (always happens that way) I just ignore it and then i feel bad afterwards. I was trying to get him to take a nap because he was really crabby that day, and i could tell he was tired. I put him in his pack n play and closed the door and walked out while he is just wailing away. He was REALLY upset. He was tired but he did not want to sleep. So after 15-20 minutes of listening to him cry I went in the room, picked him up and got him to calm down. I swear he was sleeping because of the way he breathes when sleeping he sounded just like he was a sleep but when i looked at him his eyes were wide open. I sat down with him and started rocking him in my arms and he goes backwards in my arms, and I tried to get him to lay against my chest again but his whole body was tensed. He would not relax his body so i had to hold him so he wouldn't fall backwards and the whole time he was having a Complex Partial Seizure. I had never seen one like that before it really worries me that his are changing into the big ones :( in which time i would freak out. I would not know how to handle one. We have his appointment with the neuro on Nov. 1st so I will be discussing this with them.

I just wish it will all go away for him. I do not like to see him like this, and it doesn't seem like his meds are controlling them that well either. I just have to keep hoping that one day they will find a cure for this so everyone effected by Epilepsy will be cured.

Antother Seizure :(

Well we went a whole week without a seizure and now they have returned :( It seems like this will never end. Last night he was really crabby he got up on the couch and asked for a blanky and that was it. . .I covered him up and a few seconds later he went into a seizure. I do believe he had one back to back and after the second one he fell asleep.

I feel weird calling them seizures because when people hear the word seizures they automatically think convulsing when that is not the case in all seizures. There are seizures where the person will stare for a few seconds at a time but have multiple seizures daily and then there are the seizures like my son's Complex Partial Seizures where he loses consciousness and he stares he also has lip smacking with his and moves his hands sometimes. I will post a video of Rylans.

http://www.youtube.com/watch?v=UkMh64jZkOY

3rd one this week!!!!!

So these seizures are starting to get more frequent. Last night I gave him his meds (per his neuro). He was throwing a fit to take a bath so I was giving him a bath and he normally will stay in there and play for a while, but not last night. As soon as I washed him up he wanted out. So i took him out and laid him on the couch wrapped up in a towel. I went to get him a diaper and his nighties, well before I could even start looking for his nighties I hear Tony's grandma say "I think he is having one of his seizures" So i stopped what I was doing and checked him over and made sure he was ok. I put his diaper on and he kept crying for a blanket so I got him one and not even a second later he was sleeping on the couch. My poor little boy I hate these things, I am hoping after he has been on his meds a couple days they will stop. But, they were starting to come back before I took him off of it for his rash so I don't know what is going on with it. November 1st is his next neuro appointment unless we get into this other one at Childrens Hospital. Guess we will see.

Bad Night ;(

We had a bad night last night too :( Something I will never get used to! It started out as the normal CPS, but then he did something different. I really hope his seizures aren't changing into the scarey kind. He started with his stare and then his lips were smacking and his eye's were blinking fast. It also looked like he had some small twitches :( Still waiting on a call back from his doctor though. This just makes me a nervous wreck!! I can't stand it. I want him to be better not worse, and it started coming back while on his meds. Why does it have to happen to my little guy, I just want him to be better so he doesn't have to go through this.

He is doing much better!!!

I am redoing my blog since i can't seem to find my other one LOL. BLAH. Rylan is doing pretty well with his seizures lately. He had a small one last Saturday and then that Monday for some reason he was extremely tired. He took a nap at the baby sitters for 5 hours!!! That is the longest he has slept during the day :/ It was probably just an off day for him because after that he has been fine. We switched him from Trileptal to Tegretol because he was to sensitive for it, and it has been working out really well for him. So far the only side effect he has on it is he gets really crabby and emotional right after i give it to him, it eventually goes away, but it can be all night too. But I will take it rather than him be the zombie he was being while on Trileptal. So that's all I have so far on Rylan.