Sunday, December 13, 2015

It's never as easy as I think it's going to be.  We ended up taking the whole week plus a bonus weekend! By Thursday afternoon he had not seized so I thought we were throwing in the towel.  His medications had been adjusted and readjusted to try to 'force' a seizure and it just wasn't happening. It was a strange feeling to be disappointed because he HAD NOT had a seizure. His doctor asked if we could stay a few more days to see if it would happen because we really need to know where his seizures are coming from in his brain.  Since we were already there we decided to go ahead and stay.  

His last EEG was in February of 2013, I believe.  In the past, Luke's EEG's have been fairly normal which is interesting given the structure of his brain in the first place and his epilepsy.  His EEG has changed, though, now showing 'epileptic spikes' coming from the back of his brain - the occipital lobe. These spikes are coming at all times we discovered no matter what medicine he was on and how much of the medicine...meaning that as the doctors messed around with his medicine this week he consistently had epileptic spikes with more activity during sleeping hours. Even without having a full blown seizure, the doctor was fairly certain that was probably where his seizures originate from.  It's really interesting to us, though, because that is one area in his brain that is NOT affected by polymicrogyria (PMG).  So it's essentially just about the only area that is not malformed but it is the area the doctors felt his seizures were probably coming from.  

Anyway, I will try not to turn this into a short novel!  So by Saturday I thought that the whole week had been in vain.  They had an answer...well probably they did but they didn't know for sure.  Frustrating!  Luke had been a champ but I felt bad because he hated having his head wired and rewired and was ticked off when they had to place his IV or even touch it.  He was tethered - literally - to a wall in ONE room for an entire week.  He did really well with it but I was really hoping for solid answers so that the likelihood of having to repeat the experience was slim!  

Of course, as you can probably guess, he finally had a seizure Saturday night.  His seizures are for sure coming from his occipital lobe of his brain.  The scary part that I found out today was that while he was laying on me and sleeping, according to the EEG reading he had been seizing for TEN minutes without me even knowing it.  He sometimes vomits after or during a seizure and he choked a little and I looked at him and saw his eyes deviated.  Keep in mind that we were in a room where someone was watching him via video at all times - not just me - and neither of us knew anything was amiss.  His seizure started in one side of his occipital lobe and stopped and moved to the other side.  All together he was seizing for about 45 minutes.  

As he gets bigger his seizures are becoming even harder to recognize.  He was having conversations with us and laughing and tooting (truly one of his favorite activities!!) while he was seizing.  His eyes were deviated the entire time he was talking to us. The doctors who were on call were not convinced and had the neurologist who had been seeing him all week pull up his EEG at home to read it before they administered emergency medication.  They kept telling me his seizures were atypical which we already knew!  

Lately before he has a seizure he has been telling us things like he feels funky or the lights look strange or something looks strange.  The doctor said that with where his seizures are coming from that would make a lot of sense.  

Since he is now having a lot of epileptic spikes in that area with or without medicine, his neurologist also wants us to get him tested by a neuropsychologist.  From what I understand she wants a baseline cognitive test to tell us if these spikes will eventually start causing regression.  This will help her determine how aggressive she wants to be to stop the spikes.  

Surprisingly, we went into the hospital on three medications and we walked out on just one. His EEG didn't show a change when he was on or off of those medications.  So we are going to try it and see how it goes.  We are nervously excited because the less medication we can get by on the better!  For now we have to wait and let his little system get back to normal.  If he continues to have break through seizures his doctor now has more information to decide the best way to treat his seizures.  

Our little charmer made lots of friends in the hospital and also decided he wanted to be an RN, too, like all of our wonderful nurses!  Everyone did a wonderful job trying to make his week go by quickly!  Thanks for all the texts, emails, visits and well wishes.  We are so thankful for all of our support!!!
Ms. Heather was wrapping his puppy's head just like him!  He was helping with the tape.

Ms. Amanda certainly needed help taking blood pressure!  His puppy was very healthy!

Trying to figure out how to bust out of the 12th floor....

When you're stuck for a week, you always have time for a little yoga!

Both puppies ended up needing EEG's.  They were very, very brave.

This is what intentional sleep deprivation looks like :(    

He wanted everyone who came in to write their names on the board.  Ms. Micah was one of our EEG techs and he added her name to the board.  

1 comment:

  1. MY BABY DEFEATED SEIZURE
    I have to share this story; it could help someone out there. A mother, father or loved one facing stigma caused by epilepsy and seizure. There is hope. Thank you to the Admin of this blog for sharing this story.
    Joan was born a healthy baby until after 6 months when her seizure started. We took her to the hospital where doctors diagnosed her of seizure disorder. She had more than 50 grand-mal seizures in a single day. It was terrible for our little angel. Doctors gave us Pharma meds upon meds. (Phenobarb and Keppra) which caused her more complications. She was so young that the side-effects were really bad on her. We went back to the hospital where doctors told us that she might not survive more than 24 months. I and my husband went in search for better treatment that will reduce her complications and keep her alive. We never gave up on her. We started searching for at least a treatment without Pharm meds. Fortunately for me, I came across a testimony shared by Brenda Coker on how her baby was cured from epilepsy using HILTON herbal medication. I followed the email she shared and also read Dr. Mohan blog. We realized that there was hope for our baby. We started HILTON treatment, she responded very well, and became Seizure free after 5 months of Herbal medication. Joan is 5 years now and never had any seizure. She survived doctors’ predictions of 24 months.
    As a mother, I am here to encourage people with seizure or epilepsy to contact Doctor Mohan for a cure read more about his Herbal meds via www.seizurecure.blogspot.com

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