Epileptic Event - Epilepsy?

[donnajane]

My 10month old son has his Nureo unsure as to whats going on. When he was 7 1/2 months old he started locking his arms, opening his eyes wide and then shaking intensely, for up to 5 sec. He often has them in cluster the most over 100 times a day but usally 20+. He also has a slightly different version where he also arches back. He was admitted to the ED after he had a cluster which went on for 30minutes one night. The Drs were sure it was form of seizure when I showed them footage of what happened and originally wanted to do an MRI but as he had Bronchiolits decided against it as the risk of giving him an anaesthic was to great. He had an EEG, but of course had no episodes during it, and this came back fine. He was referred to Audilogy as one of the tests the Nureo did was to ring a bell and my son did not respond at all. His first Audiology test he was starring vacantly and having his shakes for the entire test. We were told they were very concerned he had Major hearing loss so booked him in for a second test a few days later. This time it was while he was sleeping and he had no eiposdes during testing. This test showed he had great hearing so we were told while having his episodes he couldn't hear. I was able to get more footage and his Paed asked for him to have a 24hr EEG as she was concerned something was not right. Again he had only a few minor episodes while on the EEG, nothing showed up. The nureo's in hospital said it was "Shudder Syndorme" . We were sent home and told all would be fine and he would eventually grow out of it. I mentioned while in hospital re his becoming "vacant" and as i did not have footage they seemed not to worry.
My little boys episodes increased to the stage of having up to 150 one day, he also now at times "vagues" out and falls sideways when sitting, sometimes he will stop in the middles of playing and his head will just go down then he will start playing again, his arms can suddenly jerk upwards or outwards out of his control often repeated a few times seconds later and we have notice on a couple of occasions him having repeated blinking then looking very confused afterwards. We are now seeing a private Nureo who when we showed him the video was concerned as to what is happening. He showed another Nureo a video of him falling sideways and he agreed it looked like an Epileptic Event. The Nureo gave us a script for Epileptic meds but said not to get it filled or use it until he said we needed to. He ordered another EEG as he explained how babies brains can grow so much over a month that what it showed back then may not be the case now. This time bub had quite a few "Shudders" while on the EEG but nothing showed and the EEG came back clear. The nureo said an MRI is another option but at this stage bub hss had a clear EEG and his head ultrasound was normal so if there is anything there they had "time". We are seeing his Nureo again in a few weeks and emailing weekly updates as well as sending him footage of any "events" we are unsure of. My little boy doesn't fit any set criteria so his Nureo isn't sure whats going on so is going to discuss his case with a group of Paedetric nureo's at a meeting on Tuesday. Our little boy is normal 95% of the time and unless you watched him you wouldn't know the "event' are happening. He is slower developing than our other kids but given whats going on we have been told his developement is fine and at the bottom end of normal compared to our other kids who were at the top end of normal.
Sorry for the long post. Just couldn't stop once I started. All I want is someone to work out whats going on with out little man so we can help him as we are scared at how his "events" seem to be developing.

[Nakamova]

Hi donnajane, welcome to CWE!

I am sorry for what you are going through with the diagnosis for your son. It certainly sounds like absence seizures are occurring, but I also understand the reluctance of his doctors to prescribe a powerful med for an infant if it isn't absolutely necessary.

Have the neurologists mentioned a dietary approach at all? One that has had great success with absence seizures is the ketogenic diet, or a less strict version, the Modified Atkins Diet. You can read more about it here: http://epilepsymoms.com/diet-related...s-parents.html

Best,
Nakamova

[donnajane]

Thankyou so much for the reply. Unfortunately my little boy has multiple food intolerances and at this stage we have only found 5 vegies he can eat. So long as he eats them on different days, once per day. He is also having a special Allergy formula. We are hoping he grows out of his intolerances and have an appointment to see a specialist Allergy Gastro in Jan. His Paed originally thought his problem with food might be linked with his "events/episodes" he is having and this has still not been ruled out. Just hoping the Nureo's discussing my sons case today can figure something out.


Thanks again.