More new events! Whats going on!!!!!

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

donnajane

New
Messages
313
Reaction score
0
Points
0
My poor little man. On Thursday night he had clusters of small events while he was alseep in my arms after his 3am bottle. He would suddenly arch back body totally stiff and do a small scream/cry then relax then repeat the event again usually 4 or 5 times then he appeared to settle for around 5min and it started again, another break and then again another cluster this time he woke up distressed. He finnally seemed to be over them so I put him down but I could hear him have what sounded like another cluster from my room, I went down and he was sleeping through them, don't know how. He did wake up again a short time later and stayed awake.
He seemed totally fine in the morning like nothing had happened so I took him to child care, at my work. Just after 11.30am a very distressed call from Child Care especially when I could hear the distress in the carer’s voice. Hearing the description over the phone of what happened made me quite worried. Him appearing to have no balance then not be able to not move, his left hand being “stuck” over his eye, child care have noticed this once before but this time they said it appeared to go quite a bit longer. This happened after he woke up and his bed was soaked. He had been having one sleep a day but the last 2 days wanted a morning sleep. On Friday he was tired very early. Whatever happened happened for quite awhile. After I took him home he didn’t want to or couldn’t walk. It took him until around 3pm to start walking again and come back to being more like Harrison although he was switching between being very agitated to playing and laughing.
I rang his Nureo who was quite worried as well but said he was almost waiting for this for my son to start to show us what was wrong. He asked me to email him next morning and let him know how he was. I did this and he rang and I explained he was a lot better today but had had another smaller version of the event but this time it just seemed to be his balance. He said he wanted me to continue to watch him and ring him on Monday and he may organise another EEG. He did say though that if he has a bigger event like Friday to email him and it will go to his phone so he will call me and get me to bring him into the hospital. I so wish they would bring him MRI earlier. My little man is only 15 1/2 months old and to see him not remember how to stand or even move freaked me out. He isn't on any meds as his Nureo wants his condition to present itself first so they can work out the best way to treat it as no one is really sure what is going on. Going to purchase a baby monitor with night vision tomorrow so I can record him overnight to show the Nureo what he does.
My son has unexplained slow brain waves on the back right of his brain which makes me worry even more with these latest event. Nureo said it may have been a longer seizure or it may have been part of his brain didn't wake up. Wouldn't an MRI be better than yet another EEG at this stage it will be his 6th in 8 months. No MRI though yet.
Donnajane.
 
Well, the EEG is good for showing abnormal brainwaves and where they originate. The MRI is more about if there are any structural issues -- scars, lesions, etc. In my case, there was nothing on the MRI, but the EEG was "classic" for epilepsy. So it depends a bit on what they're looking for. There is no minimum age for an MRI, so if the neuro is searching for answers then he should do every relevant test in the book, right? Has there been any input from his regular pediatrician?
 
Thankyou so much. This will be his 6th EEG. All clear except for the last which showed a slight slowing on the back right and also his eyes rolled when the lights were flashed but they could see very little movement in his brain waves when they rolled. He has an MRI booked for July 13th and this is partly to look for what might be the cause of the slow brain waves. Both his paed and GP who were anti him having an MRI before are saying what hasn't he had one yet. I will ring his Paed Monday and hopefully she will then contact Nureo and push for an earlier MRI. He had the worst night last night and I didn't think they could get any worse. He seemed to being having events/spasms off and on for a lot of the night. We went and got an infared camera for tongiht so we can now film what is happening for Nure.
The hospital we have had his last 3 EEG's at uses at "hat" with the elctrodes on it for kids but I sometimes worry that it doesn't seem to cover the same amount of area as when he had the electrodes attached individually at the other hospital. He hated having them attached so the hat is quicker but I sometimes wonder if the reading might be slightly different with individual electrodes. I know I am probably just grasping at straws.
Thanks again.
Donnajane
 
I don't think you are grasping at straws -- I don't think it can hurt to ask if a different EEG set-up might be more accurate. Though the symptoms he's experiencing seem to be so clearly seizure-related, I wonder if they can draw any conclusions even without a confirming EEG. I'm so sorry things have been getting worse for your little guy, and I hope the doctors will move quickly at this point to help.
 
Back
Top Bottom