Tonic Seizures?

[donnajane]

We saw the Nureo again yesterday. He was great and spent quite awhile sitting on the floor playing and observing our little man. He was happy how he was interacting while playing but a bit concerned that when he moved the blocks away he just sat their and made no attempt to reach for them. He then said he felt although he was almost 11months he was quite a way of crawling or walking. We were told at 16months if he is not crawling the Nureo would be concerned. With the DVD I had sent him a few weeks ago he said he wasn't sure what one seizure was it was where he hunches forward fast like in a stomach cramp and arms go forward he does this several times in a row but Nureo said he wasn't overly concerned with it yet, he was though concerned with the ones where his arms go suddenly out to the side or upwards, nearly always in pairs, and he curls his feet when it happens but his main concern was the seizures where he goes to the side and looks vacant he said they look like Tonic Events. I have googled Tonic seizures but would love if any of you could explain them more to me as you have lived either through them yourselves or know someone who has. We are seeing the Nureo in just under a month and I have to email him weekly progress reports. He also has made sure I have his phone number if something happens and we need to speak with his urgently, that freaked me out a little but it also gave me comfort to know I have his Nureo a phone call away. At our first apt with him he mention he would know a lot more by the time our son turns one but now he said he may not know for a year as he may grow out of whateve is happening or he may develop a full form of "Epilepsy" I have a feeling he has a fare idea what is going on but doesn't want to say until he is more sure of it. I suppose with a bub this young only time will really tell. We know our son has "Shudder Syndrome" but these other Seizures he's doing are? The Nureo said your son is NQR (not quite right) but at the moment he feels its best to be "concerned but not alarmed" and wait and see. Our next apt is with his Paed at the end of Dec, then Nureo on 5th Jan, then his Allergist on 11th Jan, hopefully we will get some answers soon.
Thanks.
Donnajane

 

[Nakamova]

Hi donnajane --

I'm glad your neuro is a good one. Are he and your pediatrician consulting with one another? That would be ideal, since they could note if the seizures are causing any developmental issues. Has your son had an EEG? Is he on any medications for the seizures? If so, are they helping?

Tonic means "tension". In the case of tonic seizures, this means muscular tension. They can involve tensing of the jaw or neck, turning of the head, wide open eyes, jaw clenching. Sometimes they involve tensing/raising of the shoulders and upper arms, and/or the arms are pulled up and the fists are clenched in front of the face. They last anywhere from a few seconds to a minute. (In the case of tonic-clonic seizures, the clonic phase is just the first few seconds; the convulsions are the "clonic" phase).

The seizures you describe where your son hunches and his arms go forward also sound like tonic seizures, a kind involving what are called "flexor spasms." In these, the head flexes forward, the shoulders are lifted, the arms are flung outward and forward, and the thighs are flexed at the hip -- as might occur with a stomach cramp.

I think your neuro may be concerned about a possible diagnosis of Lennox-Gastaut Syndrome. I'm sure he doesn't want to alarm you unnecessarily (and I don't either), but you may want to do a little preliminary research on the syndrome on this site and elsewhere.

Best,
Nakamova

 

[donnajane]

Thankyou so much! I knew I would get a good explanation from one of you wonderful people. Your explanation sounds excatly what all of my sons "Seizures" are. He has several types but they all pretty much fit that description. He also goes vacant with some of them which the Nureo said is a concer. I will look up the syndrome you mentioned as I would rather be prepared but hopefully he will grow out of them but the Nureo, although he said he hope he would was not quite as convincing as he sometimes is.
Thanks again. I am just so glad I joined up this site.
Donnajane

 

[donnajane]

Sorry forgot to answer the questions you asked. Nureo sends Paeds updates. Paed is great when I see her but so hard to get her to respond when I email or ring her for urgency, ie son had a bad reaction to one of the new foods she put him on I emailed and rang twice but no repsonse. I spoke to Nureo re this and he gave me a couple of names of other Paeds who are closer to me but I feel there is so much history with the Paed and her only fault is not getting back to you, so still undecided if we will swap or not.
EEG's yes so far 3, last at just over 9 months. But Nureo isn't convinced as bub has only had his "Shudder Syndrome events" while on EEG. EEG just showed his startles, lots of them while he sleeps. Nureo is talking about doing another in a couple of months.
He has a ultrasound of his brain when he was around 8 1/2 months but they had trouble doing it due to his front fontanal being almost closed. The picture they got was all OK although the radiologist who did the ultrasound got to witness some of bubs events and said as a parent he would be pushing for an MRI.
No MRI yet. Paed has said she is a bit concerned that he may have a frontal lobe lesion and was anti him having an MRI until she saw the lattest lot of footage. Nureo has said there is time and he would rather wait as if there is anything there they have time as it would be very small. Also with my sons multiple food intolerances and his age they are a bit worried about the anesthetic so the older he is the better.
Not on Meds yet but Nureo has given me a script but said not to fill it until he either emails me or rings me and tells me to do so.
So basically keeping our eyes open for any changes and sending a weekly email to Nureo re whats happening and seeing Nureo monthly.
Your description of a Tonic seizure was so helpful. I showed my husband and he also thought it sounded so much like what our son does.
We feel just blessed at the moment that his events are very short, only seconds, and his is generally a happy little bub.
Thanks again.
Donnajane