So last night...all snuggled up on the double recliner. Under fluffy blankets. Ice cream in hand. Heating pad. Placed just so. Warming both my neck & upper back.
J & I settled in to enjoy another episode of House. USA's been marathon-ing oldies.
We've liked House since Tanzania. It was one of the few American shows satellited in. And a much better watch than South African Idol!
::smile::
But back to last night's episode.
At the tail end. You know...right before the Team resolves the crisis. One of them threw out an idea that hit me right in the heart. Amber (yes...sadly I know the characters by name!) said it could be a....
Complex Partial Seizure
::all ears::
The patient swallowed a lot she explained. And then mimicked his swallowing.
Which looks so exactly like the swallowing Trevy does with each cluster that Jonathan & I stared at each other.
No longer in the mood for ice cream or heating pads...I spent the next hour googling various studies on complex partial seizures. Hating myself a little more with each new nugget of information. Information that I should have already known. How could I not have known? It's so classic...
I've mentioned before that it's like Trevy knows when a cluster is coming. That...I learned last night...is a classic clue for the onset of a Complex Partial. As are all the other things that my heart is tearing me up right now for missing...
...the way he quiets...like he feels it coming...
...the picking at his blankie. Pick. Pick. Pick. Pick...
...or if Blankie isn't near...squeezing his binkie instead. Squeeze. Squeeze. Squeeze...
...and the lip smacking. Constant swallowing. Until the cluster passes...
...even the rubbing of his eyes. I've brought this up time after time...but no one could make sense of it...and so it was ignored as an anomaly. But I always thought it was more. That it meant something. Sometimes he'll dig at his eyes like he wants to tear them out. Now I have no doubt that his vision is being altered during a seizure.
I am convinced that Trevy's clusters are of Complex Partial Seizures. Classic in all ways...except for the clustering.
Maybe this is why ACTH did not provide us with a miracle this time. If nothing else it certainly gives me Hope moving forward with Vigabatrin!
Dr. Neuro would like to wait until we're at full dose Zonegran...and fully weaned from ACTH...prior to beginning a Vigabatrin trial. We have three injections remaining...spread over the next two weeks.
***clarification*** Trevy does all of the above repetitive behavious during a cluster of as many as 40 seizures. These seizures/spasms also involve his right arm lifting (sometimes the left will lift as well), eyes rolling up & to the right & his head moving to the right. It's always always in clusters. Never less than 5. Usually more than 10. Sometimes in between seizures he'll make eye contact & even smile. Chugani emphatically states it is residule IS. Anything that clusters is IS. Our Dr. Neuro said the correlates were not as clear as the first time...but Trev definately had the beginning stages of hypsarythmia during sleep...although only in the left hemisphere. Soooooo...that leaves me wondering is this residual IS? Can IS also be found in complex partials? For instance in a child who responded to ACTH like Trevy...with an EEG that reveals a focus? I don't know. I'm not sure than anyone does or can. So much of IS is subjective. But I do know these behaviours are extremely obvious. And always associated with the clusters. Which is why I have hope that Vigabatrin will work. It's a frontline IS AND complex partial medication! ***
9 comments:
Wow. That's incredible. And in a way won't it be so much better? If there is any kind of better in all of this? Maybe the different med will be the trick? Shouldn't they be easier to control and less catastrophic than IS? Aarrggghhh!! I feel for you. It's so double sided.
The poor little guy...through all of this...and the vision...poor sweetie. The "aura" and feeling them before they arrive, that freaks me out slightly and I feel so helpless & sad for R because I can see that he knows too, BUT on the otherhand, when they get a little older, it will be so helpful for them in regards to safety and such.
Danielle....there is no guilt in this. None. Not an ounce. You have been doing your utmost best for your lovely little monkey. Your degree from the Harvard Med School has not been printed yet, so you have done phenomenally well in helping and advocating and educating and deciphering everything for Trevor. This medical school of hard knocks that we somehow enrolled in isn't quite as black and white as we need it to be.
I'm so excited for you guys that this could be a breakthrough for Trevor.
I'll be praying and crossing every single body part in hopes that it will help!
hugs,
Mrs. M
You would think that his most recent EEG would have picked up on that. I'm not much of an expert but I would think there would be a definite distinction between the patterns for a complex partial seizure and infantile spasms on an EEG. Something your doctor should have already picked up on...or not?
Hmmm...that is quite the mystery. I always thought that if it clustered that it was IS. But the things that Trevor does...that does not sound like IS. Have you asked Dr. Chugani about this?
So much for being able to snuggle up and have some down time...ugh!!!
You guys have more questions than me! *smile* I added a clarification onto the end of my post...I'm also going to try & catch his next cluster on video. Buuuut...here's the basics...Trevy does all of the above repetitive behavious during a cluster of as many as 40 seizures. These seizures/spasms also involve his right arm lifting (sometimes the left will lift as well), eyes rolling up & to the right & his head moving to the right. It's always always in clusters. Never less than 5. Usually more than 10. Sometimes in between seizures he'll make eye contact & even smile. Chugani emphatically states it is residule IS. Anything that clusters is IS. Our Dr. Neuro said the correlates were not as clear as the first time...but Trev definately had the beginning stages of hypsarythmia during sleep...although only in the left hemisphere. Soooooo...that leaves me wondering is this residual IS? Can IS also be found in complex partials? For instance in a child who responded to ACTH like Trevy...with an EEG that reveals a focus? I don't know. I'm not sure than anyone does or can. So much of IS is subjective. But I do know these behaviours are extremely obvious. And always associated with the clusters. And clusters of 40 seizures cannot be good for his little brain...even if it's complex partials. Which is why I have hope that Vigabatrin will work. It's a frontline IS AND complex partial medication!
No, clusters are never ideal, that's for certain. But maybe the complex partials are easier to treat? The vigabatrin? I'm still hopeful and optimisitic for Trevor that if they indeed are complex partials they'll be easier to treat.
When you had EEGs done,did the Nuero conduct video monitoring as well? That was really helpful for our docs to see how the seizures present. I know you're great at getting them on video at home, which is brilliant.
We're cheering you on from chilly Canada!
M
I will give some conflicting information/observation.
First, I wonder if older kids with IS have a "different" IS?? I say this because Austin also had strange mannerisms, I guess in hindsight sorta complex partialish. Maybe this is why they had such a hard time diagnosing Austin's IS? He also knew when clusters were coming. Maybe in the older kids (over 1) the IS just looks a little different. Not to say it's not cp, but I too have never heard of anything other than IS (maybe myos) clustering.
Austin's complex partials definitely were't anything to be confused with IS. He had the same mannerisms, spaciness, picking at clothes, clenching fist, each time, no cluster of any extensor/flexor muscles.
That said, the Vigabatrin worked for Austin's IS and myos, but didn't seems to prevent his complex partials. Which is why we finally weaned him.
I hope this helps more than confuses! And I'll add the caveat that each child is different! :)
HUGS
Ok, the bad friend that I am...I have to send you the partial seizure disorders book.
Also, my friend that I told you about mentioned something about myclonic clusters. I'll give you any of the info she gives me of course.
Hmmm...could it be mylenation is more developed after 12 months that the spasms appear more on one side? I thought that it was weird that Kay's appear to be on one side too. Although, I was also taking the video from the side that was flexing, so it may have looked more like that on the video. It always looks diff in person. Anyway...going to send you that book on Monday.
Crazy that CPS was on House. I was looking on Discovery Health tonight. You know there's nothing about IS on their site. I think we need a "Mystery Diagnosis" or a special or something :) That would promote some awareness!
Shanna- it's funny that you mention Mystery Diagnosis. I was watching Saturday night's show and it was a repeat. The story is about a little girl named Daphne (she WAS part of the IS group). She had IS, but also had something called Moya Moya Disease. So they talk about the IS, but not in great detail. They also talked about the Moya Moya Disease ad her surgery at Stanford. I think the best part about the episode is they show Daphne's Mom Jenny reading Broc's IS page!
everything happens for a reason, right? i hope that whatever u find out - it brings u guys some peace! i hate hearing that u're always 2nd guessing urself, feeling guilty & wondering if u've missed something...u've done way more than most mothers would do - and u shouldn't feel one ounce of guilt if it does turn out to b the partials....u sat down to watch that show for a reason - maybe something the docs should have been able to see, but didn't & God needed u to see that show...praying for u as always!!!
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