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.
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.