Sunday, October 3, 2010

Keira's seizures are always triggered by eating and drinking now.

The were just spontaneous (occurring without any triggers), but this is where they are at now. This is part of a study I found and I am putting it here so I can decipher it.

"Seizures induced by eating are characterized by seizures closely related to one or several aspects of eating. The clinical triggers of a seizure are usually stereotyped for each patient, but patients may have some points in common. Rare patients have seizures at the sight or smell of food; others may have them immediately after a heavy meal, suggesting gastric distension as a trigger (Gastaut and Poirier 1964). Seizures with eating are typically focal motor seizures, with or without auras or automatisms of temporolimbic type, and are almost always related to symptomatic epilepsy. Seizures induced by eating are usually associated with localized or regional EEG epileptiform activity either from temporolimbic structures or from suprasylvian regions in association with larger lesions. EEG epileptiform activity that is generalized from the start is rare.

Rémillard and associates suggested that patients with temporolimbic seizures activated by eating have fewer spontaneous attacks and are more likely to have such attacks from the onset of their epilepsy than are patients with extralimbic, usually suprasylvian, seizure onset who have less constant activation by eating. Patients with suprasylvian seizure onset usually have more obvious extratemporal structural lesions and possible activation by specific thalamocortical afferents (Remillard et al 1998). They may also have seizures with other forms of buccal stimulation such as tooth-brushing or kissing. Koutroumanidis and colleagues reported a case of adult-onset sensitivity to toothbrushing only, with normal imaging and interictal left frontal epileptiform activity, and suggested that this was cryptogenic reflex epilepsy (Koutroumanidis et al 2001). A prevalence of approximately 1 per 1000 to 2000 epileptic patients has been reported (Vizioli 1962; Nagaraja and Chand 1984). The unusually high figures reported for Sri Lanka seem related to an idiosyncratic definition and to ascertainment methods (Senanayake 1990)."

Seizures with eating are typically focal motor seizures, with or without auras or automatisms of temporolimbic type, and are almost always related to symptomatic epilepsy.

3 comments:

Danielle said...

Okay. So first things first. Take a deep breath.

Good in air in. Bad air out. Good air in...

Next. And remember...I'm 3 years deep into epilepsy. Which means my heart has already run the gamut of emotions on some of the things that yours is raging through. This is how I can say things like "my son has half a brain" and not even flinch anymore! :)

Now comes the advice. Cause I just can't help myself!

* print that study and take it with you to Boston!

* focal epilepsy is NOT bad. If you have to have epilepsy. It means that surgery is a potential option.

* I was sure...and don't have enough time to research more. But there is a syndrome called lennox-gastaut. I noticed one of the investigators of the study's name is gastaut. I doubt it's coincidence. But I do not know if Keira would fall under the LGS umbrella. You might want to check out the LGS Foundation...they have a parent forum. I would join and aks questions of other parents. The more you can educate yourself before Boston - the better!

xoxoxo

I feel like such a terrible friend! No gumdrops and lolipops advice from me! It's all work...and facts!

Buuuuut...I LOVE Trevy! LOVE him! I watched him today...being Trevy...in the midst of typically developing 2 year olds all of which FAR surpass him skill wise. And yet...he was the one I couldn't take my eyes off of! I love that kid! There - that's my sugar for ya! ;)

...danielle

kristen said...

Oh, you ARE sunshine and Lollipops!! LOL
I will bring the study down along with my list of concerns and questions, but from what I have read and saw on the LGS forums she fits more into IS than that at this point. She is 11 months old and no drop attacks. She also only had spikes on her VEEG when she ate and got sleepy. None while doing anything else.
I was just excited that I found SOMETHING that talked about eating and drinking induced seizures. I wonder if she is too young for a VNS? I could put the magnet over her for it to work. lol
If it comes to surgery we will do it, but we are taking one step at a time.
Regardless, we need to figure this out and I am counting the days that go by slowly.
AND how could you not love that Trevy? He is so cute!!!

kristen said...

Dear friends and family, do not freak out and think that Keira is having surgery at this point. Danielle is simply trying to help me trouble shoot and figure out what the heck is going on so I can bring up as much as possible with Dr. Expert next Tuesday. :)

I am also thinking of bringing up using a feeding tube for liquids until she is able to have VNS or get the seizures under control via meds. (if that is what she needs) She is still 18 pounds soaking wet and has not gained an ounce since her 9 month check up. (she has lost weight) She will be 1 year on the 19th. Not to mention she has not had ANY genetic testing. So there is a lot of info to find out and discuss.