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owensmom
Posts:123
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Posted:09/14/2007 2:05 AM |
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Owen has been having seizures since July, he has been taking Depakote and now he started taking Lamictal which he won't be to his target dose of that until min November. His seizures are simple partial seizures. I was wondering if anyone else is having or has had these kind of seizures and what medication they are on. These just don't seam to be doing the trick to get rid of them completely. I'm waiting on a call from our neurology office but I know they are just going to say wait until he is at his target dose. Also, I have a hard time getting him to take the medication, it has to be sprinkled on food and whatever I put it on or in he knows right away. He is only 2 and a half.
Thanks
Cyndi (Owen's Mom)
www.caringbridge.org/visit/owenlyons
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camaxnick
Posts:15
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Posted:09/14/2007 2:58 PM |
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Nicholas has been diagnosed with Complex Partial Seizures in both temporal lobes. I have to admit that I really don't understand the difference between complex and simple partial seizures. It has to do with how the seizure progresses through the brain or something like that. Anyway, Nicholas takes Trileptal, 3.5 mL twice a day. He LOVES taking it. It is a white liquid that tastes pretty good. We put it in an oral syringe so he gets to push it in himself. It's become a game to see how fast he can take it. Nicholas' dose is actually quite high, but labs show that he is tolerating it well. If the dose is lowered, the seizures come right back immediately. His seizures manifest themselves in different ways. At their mildest, he scrunches up the right side of his face and holds it for a moment. At their worst, he falls to the ground and can't move or talk. His eyes stay open, and I think he can hear me. But he doesn't respond. His neurologist has not found any cause for his seizures so that is still a mystery.
Hope this helps. Lara
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owensmom
Posts:123
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Posted:09/14/2007 3:41 PM |
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With Owen's seizures just looks like he has the hiccups and his right hand jerks a little, nothing big they last for 5 min and he gets any where from 1-4 a day. He also gets them while he's asleep and those seam to be worse, he grinds his teeth and jerks more. His are caused from scar tissue. He just looks so sad during them but he bounces right back afterwards. I'll post again after I hear back from them. On a different note I just got a call from Make a Wish they are starting his referral. That should be fun. You went to Disney on Nicolas right?
Cyndi (Owen's Mom)
www.caringbridge.org/visit/owenlyons
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camaxnick
Posts:15
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Posted:09/14/2007 3:46 PM |
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Yes, Nicholas chose Disney for his Make-A-Wish trip. We stayed at Give Kids the World. Wow! is all I can say. No one could wish for everything that they did for him. The nice thing about his wish was that my other two children were treated like royalty as well. They went through so much when he was diagnosed too. Make-a-Wish and Give Kids the World do a fantastic job putting the wishes together.
Have fun!
Lara
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owensmom
Posts:123
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Posted:09/15/2007 12:10 PM |
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Neurology called yesterday and said what I thought that they would, wait until he is at his full dose of Lamictal and go from there. They suggested getting the Lamictal made into a liquid compound but he could only use that for a few weeks because once he is at his target dose it will be like a half a cup 2 times a day. I still can't get him to take his meds at night. I'm running out of ideas as far as what foods to put it in that he will eat. They don't want to change him from the Depakote because it is time released capsules so they work great (if taken) for kids. Well thanks for "listening".
Cyndi (Owen's Mom)
www.caringbridge.org/visit/owenlyons
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owensmom
Posts:123
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Posted:02/29/2008 2:52 PM |
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Well it has been 8 months since Owen started having seizures, they still aren't under control. They started him on Depakote first then added lamictal, that didn't work so then they took him off the Depakote and added Felbatol with the Lamictal, that didn't work it made them worse. So now he will be taking Lamictal and Keppra. Owen will have another EEG in about a month or so once he is at his target dose of Keppra. Just wanted to let everyone know what is going on. Other then the seizures he is doing great.
Cyndi (Owen's Mom)
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owensmom
Posts:123
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Posted:04/08/2008 4:57 PM |
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Owen hasn't had a seizure for a week now, his MRI came back clean so we couldn't be any happier. He is currently taking Keppra, Topamax, and weaning off of Lamictal. Owen has a PET scan set up for Friday.
Cyndi (Owen's Mom)
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owensmom
Posts:123
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Posted:05/31/2008 1:05 PM |
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Owen had his PET scan in April and it looks like surgery is in our near future. We meet with his neurologist and neurosurgeon on June 13th and surgery is scheduled for June 19th. From what I understand they will be taking out the scar tissue caused from a previous surgery and the area around it. Owen has been on a lot of different medications.... Depakote, Lamictal, Felbutol, Topamax, and Keppra. None of them seam to work for him. His seizures stopped for about a month but came back so it looks like surgery is going to be the only way to control the seizures. They will be doing a MRI right before the surgery, he was due for his next one July 7th. Oddly enough we aren't even worried about that. We want to get this all under control so Owen can enjoy his summer. Just thought some of you would want to know what is going on.
Cyndi (Owen's Mom)
www.caringbridge.org/visit/owenlyons
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owensmom
Posts:123
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Posted:06/12/2008 12:39 AM |
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So, surgery is on hold for now indefinitely. The whole left side of his brain is
very active with seizure activity, so they are assuming that everything has
moved to the right side probably since his first surgery. It wasn't just
the are by the scar tissue like we thought, he was probably having this
activity way before the seizures started. His first EEG from a year ago
and the one in March show no changes, so they aren't getting any worse.
His symptoms have probably changed because of the different medication he has
been on. He has plenty of room to change on medication and he can go up
on the Keppra 4 times what he is taking now. With Owen already having
right sided weakness he might loose what use he already has. They can't
guarantee anything so he said why worry about it now lets try and get the
seizures under control and help Owen improve in the areas that he needs help
in. Now this is news I am happy about. I wish there was a quick
fix for his seizures but there isn't so lets not make things worse. Yeah
if he starts to have 100 seizures a day and it starts interfering with his
life then we will talk about it, but for now we all agree this just isn't what
Owen needs.
Cyndi (Owen's Mom)
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wkershaw
Posts:1
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Posted:06/18/2008 5:05 PM |
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Cyndi,
Sorry to hear about the seizures and the drama that goes along with them. Jazmine had a small bout with seizures. We were lucky, they were being caused by some other medication she was on. Surviving has its bumpy roads too, but remembering last year (I read your posting) it really puts things into perspective. Thanks for the updates.
Wendy (Jazmine's Mom)
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owensmom
Posts:123
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Posted:06/24/2008 3:07 PM |
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Okay, so here we go.... It looks like Owen will need surgery and it will be in October unless we decide to do it sooner. The whole left side of his brain has constant seizure activity. There is not much else we can do, we have spoken with a number of neurologists, neurosurgeons, epileptologists, neuropsychologists, and a few oncologists we have covered all our bases and it is all points to surgery. It will be a hemisphrectomy, scary word isn't it? They will do a resection of the left frontal lobe and a corpus callostomy where they basically disconnect the left side from the right side. Here is a link to check it out more....
http://en.wikipedia.org/wiki/Hemispherectomy
With everything Owen has been through we have tried to avoid doing this, I have spoken with a few families who have had this done and they have reassured me that this is the right decision for us. Owen will not lose anymore of his normal functions, it might take him a month to fully recover from surgery but he should only be in the hospital for not even a week. All the parents that I have talked to have all had the same neurosurgeon that we are going with in Milwaukee, Dr. Lew. I know a few of our AT/RT families know him quite well. They expect Owen to do wonderful with the surgery and be seizure free forever. I just wanted to keep everyone up to date. We have already been down a long road and now it has just gotten a lot longer and has a bunch of twists and turns.
Owen has his 2 year tumor free MRI on July 7th so keep your fingers crossed!!!
Thanks,
Cyndi (Owen's Mom)
www.caringbridge.org/visit/owenlyons
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owensmom
Posts:123
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Posted:07/29/2008 7:22 PM |
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Owen will have his surgery this Thursday the 31st of July. It is a functioning hemisphrectomy, this should get rid of the seizures once and for all. Owen has been having seizures for a year now and no luck controlling them with medication. He is having it done At Children's Hospital of Wisconsin in Milwaukee by Dr. Sean Lew. Owen should be back to himself in a few days, it might take a little longer then that for everything to turn back to "normal" but by the end of August Owen should be back to 100%. So please keep him in your thoughts and prayers, I will be updating his caringbridge site while we are in the hospital. Wish us luck!!
Cyndi (Owen's Mom)
www.caringbridge.org/visit/owenlyons
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