Seizures, Seizures, Seizures GO AWAY

So Sean as you can see from my title had more seizures this past week. He had 3 with in 36 hour period and they were a little different than his usual ones we have seen.

Two of them happened at school and one at home. His eyes rolled to the back of his head which they have never done before. It totally scared EVERYONE who saw them his aid, teacher, and me.

I called the neuro and they had us come in on Thursday the seizures happened Tuesday and Wednesday. We can not figure out anything that triggered them he is not sick no fever, cough, sniffles, nothing, hasn't had a growth spurt not sleep deprived.

We are nervous because of the new feature of his seizures the eye rolling. He is on trileptal right now of 4 ml twice a day and now he is taking 5 ml twice a day.

He has lost a couple of pounds since the last visit which he is just thinning out, his neurological exam was the same as last time which is good news.

We have to take him in for a sleep deprived EEG this Tuesday. We have to put him down to bed at 7:00 tomorrow night and wake him up at 2:00 AM and keep him awake until all of the leads are on his head. How are we going to do this and how I am I ever going to sleep again.

I got a part time job at the nursing home which I am excited about (that is another post) and have to work tomorrow from 3-11 PM and than have class Tues night 6-10 PM and work Wed 3-11 PM, class Thurs 6-10 PM and Fri AM I take my state boards test. Sat I have my Math test and I am working 3-11:0)

Life is definitely chaotic right now. I am stressed out.... to say the least!

In utero stroke and how far we have come

Do you remember, I can not believe we are almost at our 1 year anniversary of finding out Sean suffered an in-utero stroke, has closed lip schizencephaly aka a whole in his brain, the seizures epilepsy, the right side hemiparesis cerebral palsy, the sensory issues and much much more, and some stuff we still do not know.

Here is my original post March 1st, 2008 talking about our story, coming here to vent, cry, show frustration, and break down. How could my baby my unborn baby have a STROKE? Yes you read that right I wrote that then and I still right that now. So many people, doctors, and the society still do not know that no matter the age how young, how old STROKE can affect you. While I am still an emotional mess, Sean, Patrick, and I have come a long way from where we were.

Sean started with going to therapy through Early Intervention we went to physical therapy, occupational therapy, aquatic occupational therapy, speech therapy, and developmental therapy.

Now that he just turned 3 he started the Early Childhood Special Education program in our school district and is getting therapy privately through our insurance too. He gets occupational therapy, speech therapy, and social skills, behavior, coping and sensory help all at school. He gets occupational therapy and aquatic occupational therapy through our insurance on top of what he gets from school. So he still keeps us VERY busy. But I love Sean, we love Sean and will do what ever we need to to make his life better, him better, and him to be a happy boy.

We are very blessed to have Sean and I know GOD only gives people what they can handle and from the beginning we new how strong and what a fighter Sean truly was.

The neurologist thinks Sean's stroke happened in my first trimester because of his brain not developing correctly during brain development which is why he has a hole in his brain. He is also suffering from seizures. Complex partial seizures and if you saw some of my recent posts he is starting to have them again:( Although we are adjusting his Trileptal and hopefully that is all Sean needs for them to stop. I can not put him through another EEG it was hard on all of us, but we will if we have to.

Sean seizures are happening in the temporal lobe, and frontal lobe, and his seizure happened in the parietal lobe and the aka "hole" in his brain is affecting all three.

Sean amazes us daily, weekly, all of the time. The things he thinks of, the things he says, the things he does. He can count to 18 now, knows his entire alphabet by recognition, his shapes, colors and so much more. I know there are a lot of difficulties he has and goes through but I truly feel there is nothing he can not do, and I will never let anyone tell me he will NEVER do something because that is not true. Some of the things he has already done are amazing and I know he will continue to do more and more things that will amazes us and hopefully some of you too. I know that things may be harder for him than most but we have learned to go at his pace and love every moment of it.

I know we are not quite at the actual anniversary yet we are close enough and I have been thinking about a lot of this and a lot of things lately and wanted to get it out here!

Sean will have a life long diagnosis but he is a survivor, and my hero and I am glad that I have become friends and met a lot of you. You all have made this easier on me and my family.

We had some answers and just needed to learn more about what those answers meant which lead to more and new questions which some are still not answered and some may never be.

Cheers to a new year, with lots of new joys, new tears, new ideas, new friends, new meetings, new awareness, and new me. I am going to try and be less of a worrier and more of an optimist and learn to live each day to the fullest and embrace everything and not worry what could go wrong but live with what we have and show everyone in my life how much they mean to me.

Thanks and much love

Erin

Seizures, Meds, and going to a pedi hemo/onco.

Well sorry for the delay in updating about Sean's pedi neurologist appointment. It has been a crazy few days I had to go down town for work last night and I just figured out how to get online from my lap top and don't have much time till have I to be in my next meeting.

So the pedi neurologist said that Sean is having seizures he is having complex partial seizures and we need to start medication but since I am down town till Sunday we are going to start on Monday so Patrick and I will both be able to be home and be together.

The pedi neurologist said because of the history, the mri, what the mri showed, the eeg, and the activity he was able to see on the eeg, and what we are describing he says he is indeed having them and the medication should help.

The eeg I guess was not a complete waste of our time with Sean not falling asleep, was nice to not have to put him through another eeg at this point. We will have to do more to see how the medication is working and will have to have repeats and a bunch of blood work to check his blood levels from the medication but if this will help him it is something we need to do.

He also said that things could be happening with out anything noticeable to us or anyone around him as well. He said that the activity could be causing some of his acting out and behavior. Yes I know he is in his "two's" but some of it is just off to us.

We have to go back and see him again in six weeks. He answered all of our questions to the best he could.

It was also really nice to see everything on the MRI. He showed us the stroke on the MRI films and also the closed lip schiz. Basically there is an area of Sean's brain that is not together. It is in the same area of where the stroke happened and it was amazing to see it. He doesn't know if this part of his brain where it is not together what it could mean but for it to be watched. He said that he thinks the stroke happened sometime between month 1-5 gestation because of the closed lip schiz.

He said we are at a slight risk for other pregnancies but he is more worried about Sean's protein c and protein s levels because they are both low and we have to go see a pedi hemo/onco. and I need to go thru all of this testing too. So once you feel you get more answers they give you more unknowns.

I know this is short and I am sorry for the delay. But I will post more soon.