Absence ...
May 19, 2006 at 5:05 PM
by Ashleigh
I'm writing about my boy.
We found out in May last year that Seb has a lesion on the left side of his brain near the corpus callosum.
Apparently it had been present since birth and resulted from a stroke either in utero or during birth or shortly after birth. He had an MRI last year which clearly showed the lesion and he had physiotherapy to help him with the asymmetry in movement which resulted from the lesion. At the time the neurologist said that he had little to no idea what might happen to Sebastian in the future, but that we must observe him carefully for any signs of epilepsy.
In December I wrote this in my diary about him:
Sebastian had a peculiar episode this morning where he was fine up until after breakfast. I asked him to put his coat on and then he complained of feeling peculiar and having a choking sensation. I made him lie on my bed and he started crying and screaming about feeling strange and how he felt strange in his neck and his tummy. He went on about all kinds of things, then started shaking and shivering and said he felt very cold. I took his temperature and it dropped below 35C. His heartbeat and breathing were very rapid. He went into his bed and went straight to sleep in a very deep sleep. His eyes were rolling and he was very cold and still. Eventually I woke him to take him to the doctor and he doesnt recall much of the episode at all. Once we reached the doctors office he was fine, other than looking a bit pale and listless.On Monday and Tuesday this week he had two 'absence seizures'. He was being closely observed at the time as he was being tested both for the Dutch CITO tests and for the gifted program I mentioned a couple of weeks ago.
So, unusually for six year olds, he had a teacher all to himself instead of spread out among 25 children.
The first time it happened, on Monday, he missed a page of his test and wasn't writing or paying attention to the spoken questions. The teacher asked him what he was doing and he was unresponsive to her. He looked perfectly normal, except for fidgeting intensely and his eyes were open but he didn't respond to her waving her hands in front of his face or touching him on the face to get his attention.
When he 'came to' he was shocked and upset that he had missed a page of the test. This all lasted a couple of minutes.
The teacher thought it was strange, as he is usually very receptive to learning, but she didn't say anything to me in case it was an isolated incident.
On Tuesday he was with the Special Ed. teacher and he stopped responding to her during a test. She couldn't get him to respond at all so went and called the class teacher who came and confirmed it was the same as what had happened on Monday. It lasted a little longer the second time, but he was fine afterwards. He can't remember anything that happened during the time he was with the Special Ed teacher except the first question she asked him which was about multiples of 2.
On Wednesday they spoke to me about it and I communicated with the hospital. Yesterday the neurologist called me and spoke to me about the situation and said that it did sound likely that Sebastian had experienced a couple of seizures and that he'd need to have an EEG.
Today the hospital phoned me and the EEG is scheduled for 30 May.
The Epilepsy Helpline in the UK was very helpful and they're sending me some booklets written for children about having the EEG and also about dealing with epilepsy.
It sucks intensely. This new situation could mean that the lesion has spread, it could mean that there are brain cells being affected that weren't affected before, but what it definitely does mean is that life just got harder for poor Sebastian.
Comments
I am hoping that it's nothing serious, and the EEG will help to give some answers. I imagine it must be very frightening!
Thinking of you all.
Ash...I sorry to hear this. I remember you talking of this before. It must be so worrying not knowing what the future will bring. Sending lots of (((((hugs))))) your way. I hope you everything goes as well as it can for the tests.
Oh my gosh, Ash. I just don't know what to say, other than that I've got all my fingers crossed that this is NOT bad news. You've had so much to cope with, for far too long. My hugs to Seb, and to you, too.
The unknown is the scariest place in the world, especially when it involves your child. Hugs and prayers from me for you and your family.
So, so sorry. There's nothing worse for a parent than feeling helpless in the face of a child's medical condition. I'm praying for you all.
Sorry to hear about Seb. Hope the tests go okay and he gets the help/medication he needs.
(((Hugs)))
{{{{hugs}}}} Ash. I'm so sorry to hear your news. I hope the EEG goes well and maybe it's a temporary stage or can be treated easily. It's so hard when things like this happen.
I send you my support and I hope your son can get best help.The child is the most worthful in our life.
Ulla in the north of Sweden
Ash, your family will be in my prayers *hugs* take care of YOURself ok? Sebastian needs you to be there for him.
Poor little guy to have to go through this and I'm sorry for your family to as well. My neighbor has epilepsy but I don't understand it all fully. I'll be praying for Sebastian and hoping the test will give the DRS all the information they need to treat him best.
Hi Ashleigh,
I'm reading your blog since some time ago. Today, I'm impressed about your son situation. I hope you and he can get enough forces to go on, day by day.
I don't have any words...
Hugs for you and your family.
Ash I'm so sorry to hear about Sebastian. We to have an epileptic in our family. It is hard on her but she still has a very normal life. I'm sending very positive thought your family's way. I hope you get some definite answere.
Dear Ash, I have just caught up with your blog after an absence of a week or so, and I am horrified to read your news about little Seb. I always get the impression from your blog posts that he is the light of your life, and this is so sad for you all. Make the most of your blog friends here; keep us up to date with Seb's progress. You can see you have lots of friends around the world in cyberspace who are concerned for you and your loved ones. {{{HUGS}}}from Oz.
I hope all is as good as it can be in this really difficult time. Life sure throws some shit around and I'm sorry you and Seb copped it! I'll be thinking of you and wishing you well.
Oh Ash, I'm so sorry to hear this. It must be so scary for you all. {{{{{{{{{Big hugs}}}}}}}}}}}}} for you and Sebastian - you are in my thoughts.
I hope the EEG gives you some answers and if it is epilepsy, that it can be easily controlled and doesn't interfere too much with Seb's life.
Take care...
May 19, 2006 5:14 PM