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Donnajane, do u know of it's size??

Thanks to everyone for your replies, I am taking it all in.. I can't believe what a complex thing epilepsy is. It seems to be so different from person to person. I feel I have a long way to go before I understand it but I'm trying!
I hope my questions don't seem too silly!! I'm learning much more from people with real experiences like yourselves than I have through all the reading I've done.
Thanks again
 
Donnajane, do u know of it's size??

Thanks to everyone for your replies, I am taking it all in.. I can't believe what a complex thing epilepsy is. It seems to be so different from person to person. I feel I have a long way to go before I understand it but I'm trying!
I hope my questions don't seem too silly!! I'm learning much more from people with real experiences like yourselves than I have through all the reading I've done.
Thanks again

It is definitely overwhelming, so glad that you found cwe!
 
Not quite sure of the lesion's size. Would have to go back and read MRI report. His Nureo said its more important if it grows or alters. I don't think it is very big though but he is only 19months old.
He has an appointment with the Metabolic Unit is a few hours time and they are going to go over the MRI results and give us the Lumbar and blood results as well today so hopefully we will have more information.
Of course my little man is having a great day which is amazing but I sometimes wish he would have an episode or one of his strange periods in front of his specialist instead of them having to watch the footage.
 
I know exactly what u mean there! I'm glad my dd had one at school yesterday, just so somebody else has seen it!!!
 
Not quite sure of the lesion's size. Would have to go back and read MRI report. His Nureo said its more important if it grows or alters. I don't think it is very big though but he is only 19months old.
He has an appointment with the Metabolic Unit is a few hours time and they are going to go over the MRI results and give us the Lumbar and blood results as well today so hopefully we will have more information.
Of course my little man is having a great day which is amazing but I sometimes wish he would have an episode or one of his strange periods in front of his specialist instead of them having to watch the footage.

Any news?? :)
 
Feel like todays appointment was a bit of a waste of time. All of his results are still not back. The ones that are are normal. The Dr watched a bit of his overnight event footage and asked why the Nureo hadn't organised another overnight EEG. From the way the Dr was speaking and the fact that she asked several times when his next MRI was it was as though she thinks it the lesions causing his seizures etc. It was as though she discounted his other weird things which make no sense. His Paed has a child with metabolic issues and she says when she looks at my sons issues its has so many cross overs with this other childs file, other than the other child being quite disabled. She says things which are almost metabolic specific. When the paed was saying this though she didn't have his MRI results. Sorry I am a bit frustrated I even got asked why his Nureo was all the way on the other side of the city and not the children's hospital so I had to go through how we were dismissed by the nureo we saw there as my son "just having shudder syndrome" and how the hospital receptionist had recommended this other Nureo as they were private and we would be able to see them a lot easier and it would mean our little boy would see the same Nureo each time.
Although I wish had been having one of his bad days so they could see first hand what happens I was glad to have my little man be happy and have so much life and sparkle in his eyes.
 
Sounds like a frustrating day!

We managed to get an overnight EEG for the 4th of November which seems to be a long way off :(
 
Yes, that does seem a long way off, but here's praying that the test can be productive in terms of diagnosis and treatment. Know how frustrating that waiting can be.
 
Nov sounds like a long way off but it will come around quick enough. I have already started marking off the weeks until my sons next MRI on Jan 18th (the day before he turns 2).
I know its hard but try not to only focus on the EEG, I know at times I get caught up in my sons issues and it becomes like being in a bit of a bubble. I am trying hard now to enjoy life in general more and I although I still keep a daily log of what is happening and photograph or video any new events/ reactions I am now trying to focus on the great things he and my other 2 kids do as his condition is part of our life not our whole life!
Take care. Keep strong and remember there are other parents going through a similar time or who have been through it and are always here to chat
Donna
 
Nov sounds like a long way off but it will come around quick enough. I have already started marking off the weeks until my sons next MRI on Jan 18th (the day before he turns 2).
I know its hard but try not to only focus on the EEG, I know at times I get caught up in my sons issues and it becomes like being in a bit of a bubble. I am trying hard now to enjoy life in general more and I although I still keep a daily log of what is happening and photograph or video any new events/ reactions I am now trying to focus on the great things he and my other 2 kids do as his condition is part of our life not our whole life!
Take care. Keep strong and remember there are other parents going through a similar time or who have been through it and are always here to chat
Donna

Thanks Donna. Your so right. This has all come about in a matter of weeks for us so all very new but definitely have to remember the bigger picture :)
 
Yes, Donna, you're so right -- it's so easy to just get so wrapped up in the whole thing that the rest of life just passes by.

I remember our epileptologist gave us a word of wisdom a few months ago, "It's about living with epilepsy, not having your life controlled by it."
 
new article

I get the "Epilepsy Therapy Project" newsletter online, and just today an article was published: "Seizures and Brain Tumors - A New Approach to Treatment?"

Perhaps the moderators could post the link in the research section?

The article has to do with a study on a type of brain tumor called a glioma.

Of the patients in this study, 42% had seizures related to the tumor.

They discovered that the patients that had seizures had higher levels of glutamate concentrations in the gliomas and altered glutamate transporter expression.

The researchers are hopeful that this research "perhaps may shed light as to how to manage seizures and epilepsy in patients who do not have any tumors at all."

I"n an accompanying editorial by Drs. Rüegg and colleagues, the editorialists find that this study aligns with recently published animal data showing that glutamate increased in certain animal models and seizures can be abolished by applying a blocking agent that stops the transporter from working."

"This blocking agent, known as sulfasalazine, is a well known and currently approved drug for inflammatory bowel diseases and used by gastroenterologist. By the same mechanism, glioma growth can also be inhibited. Perhaps taken together, this potentially suggests, at least according to the accompanying editorial, that sulfasalazine might be tested as a seizure-suppressing agent in patients who have tumor-associated seizures. Since these seizures are often resistant to typical anti-seizure drugs, perhaps looking at a different approach to management would be beneficial in this particular instance."
 
Perhaps the moderators could post the link in the research section?

Done!
And at this point, you should feel free to post such links/articles yourself -- no need to ask a mod. (Let me know if for some reason the links don't show up for you).
 
Thanks KarenB that is really interesting. A glimoma is one of the things they think my sons lesion may be. Will look up the link after this and then attach link next time I email his Paed. After really bad run a couple of weeks ago our little man is amazing us all yet again. Still has a few small issues but nothing major. Its weird but at these times I am sometimes more nervous as I am hoping he is "growing out" out of what is happening, don't know if you can grow out of a brain lesion though, but then I sadly know often after a good spell like this things can become quite bad again hopefully they won't.
We are off to see his GP this week to organise for an ultrasound on a swollen gland he has had on the back left of his neck for almost 6 months. It has changed and it feels like it is spreading under the lump, bit hard to explain. Nureo and Paed dismissed it months ago but GP said it might be worth looking into. We agree, especially now its altered, nothing really adds up with our little man so hubby and I feel we need to get everything like this checked as its amazing where the pieces of the puzzle are comming from. Will probably have to book appointment back at the children's hospital for his ultrasound as the radiology clinics only have a person come once every couple of weeks to do paedeatric radiology and would rather someone who does it all the time.
Hubby and I had the most wonderful night tonight watching our 3 kids play ball together. (Eldest is boy 5, then girl 3 in Oct then our little man almost 20months.) They were so funny chasing after the ball together but the eldest 2 are so caring of the youngest and making sure he had a turn as well. They don't see his issues as anything but part of him, no different than having red hair or brown. The eldest does worry a bit when he is really unwell but otherwise he's just his little brother who annoys him sometimes and who loves to copy him. Our little man is special not because of his issues just because of who he is.
Donna
 
Hi! My daughter's seizures are exclusively in her sleep. She has partials and T/C (before awakening when she has them). I just wanted to let you know you are not alone in your journey to find answers and help. I pray for all of our sweet kids everyday!!
 
Hi! My daughter's seizures are exclusively in her sleep. She has partials and T/C (before awakening when she has them). I just wanted to let you know you are not alone in your journey to find answers and help. I pray for all of our sweet kids everyday!!

Thanks Lisa
My daughter wet the bed last night which has me wondering what's going on in her sleep.
I also just filmed what I think is an absence seizure hmm
 
Hi

Im from perth , do you live there or are you just visiting? also who have you been seeing at the pmh? I have found tricia the epilepsy nurse a very good go to person for info if you are feeling unsure and she has just helped me try to sort out my issues for my 5 year old.

Another thing to look at finding is a group called epilepsy action, they know sooo much when it comes to different types of seizures and treatments ect.I have dealt with tina furse she is lovely.

I hope that helps and if you eed any other info for perth stuff please give me a shout i'd be happy to help :D
 
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