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Paula,
I can so relate to you email. Especially the word "despair". I do feel like that at times. If I hear a "thunk" at the other end of the house, I come running. If the phone rings at work and I recognize her school phone #, my heart is immediately in my throat.
The best thing that ever "happened" was when Chelsi was 4, she became toxic on Lamictal and Depakoe, became ataxic (couldn't even sit, let alone walk) and we spent 4 days in Children's at Seattle. The hospital was extremely full, so we ended up on the oncology floor. What an eye opener! Seeing children in all stages of cancer treatment....we came away with an "okay - we can do this...it could be SO much worse". I, too, try to keep things positive, but at times when things just aren't going well, it can be overwhelming.
I've asked her regular neuro to pull some strings...that I wasn't happy at all with the lack of care. We'll see how it goes.
Thanks for the email and take care.
Sue
----- Original Message -----From: Paula ThalmannSent: Saturday, January 19, 2008 2:44 PMSubject: Re: [Cent_Wa_Epilepsy_Support] New Member
Hi Sue,I really feel for you. It's so hard to watch anyone experience a seizure, and doubly so when it's your own child. That must have been really hard when she was a baby, and hard to watch her continue to have monthly seizures. Any seizure activity is too many as far as I'm concerned. For us, it's the "never knowing when it's going to happen" that's so unnerving. Does your daughter had any warning that she's going to seize or does it just happen? Although my son's seizures are nocturnal now, they can (and do) occur during the day without warning.Do you notice any pattern to her seizure activity? We've tended to notice a surge in activity around growth spurts. And, has your neurologist talked with you about hormones and adolescence? There is some data regarding increased seizure activity surounding puberty when hormones are coming into fruition. My neice (who's 34) had seizures growing up, but was seizure free for her adulthood .... until she got pregnant. Her neurologist told her it was not uncommon for seizures to resurface because of the hormone levels.Since his VNS surgery, we've noticed great seizure improvement during the day (only experienced one and that was right after surgery) as well as better sleep. My son's seizure activity is centered in his frontal lobe and it's not possible (at least with current technology) to pin point a certain default. In other words, we located the neighborhood but can't pinpoint the house. When he seizes, the activity affects his entire front right lobe. Breaks my heart. So. for us, the VNS is hopefully calming down the activity in his brain. We found out that he was having almost constant small seizures with build ups to big ones. My gut is telling me that the VNS is helping calm down those small seizures. I would love to be able to reduce his meds, but it's too premature to do that now. Reducing meds in the past has been disasterous, so we approach all of his neurology care very methodically. His seizures used to present with pain ... they likened it to being electrocuted. It was awful. At least now there's no or limited pain.Despite my sometimes overwhelming dispair, we definately look at the cup being half full. Life is good and we try to focus on all the things he can do. My hope for him, is that he'll enjoy life and find love and happiness. I have to think that yes he will. He's a true champion. And when I feel panic trying to take hold of me, I remind myself that if he has to endure this, then so can I. I will never stop trying to help him.Regarding the VNS appointment, how frustrated you must be having to wait so long. Even more so because they cancelled the appointment. How comfortable do you feel telling your current neurologist that you need him/her to be your child's advocate and get you an appointment NOW. We've had great success using that language. Um, although I openly admit that, um, I'm quite persistent in working with physicians. I definitely like the team we are working with, but gone are the days when I was submittingly polite. I'm still polite, but very persistent. :-)I noticed that your daughter takes Keppra. I had heard about others having success with it, but when we tried that last September for a few months, it didn't go well. We've found that Trileptal helps control the seizures, Neurontin helps control the pain, and tranxene overall subdues the electrical brain activity. One thing that was sooo frustrating just this past month was that a brand new generic Trileptal was introduced. Due to insurance, we had to switch. Normally I don't mind using generics ... in fact he takes the generic neurontin and tranxene. However, the switch to generic trileptal did not go well at all. I noticed he was "off" during the day, he could not wake up in the morning, he had stomach aches, experienced drooling, and had more nocturnal seizures. GRRRRR. So his neurologist had blood work done and sure enough, his trileptal levels had dropped over 10 points in just a one month period. The neurologist wrote a new prescription indicating Name Brand only and thankfully my insurance company honored that ... it still costs triple my copay, but it's doable. In just one week being back on the name brand, those symptoms have disappeared. Whew.Yikes, I just looked at the clock and need to scoot. Hope you have a great weekend. Look forward to hearing from you!Paula----- Original Message -----From: SUE OWNBYSent: Friday, January 18, 2008 4:57 PMSubject: Re: [Cent_Wa_Epilepsy_Support] New Member
She has her regular neuro there which we can get into anytime we wish...but we've been waiting for a specialist in mitochondrial disorders for this whole time. Had an appt. in October (scheduled 10 months out) and it got cancelled the week before because he was going out of town. I've heard the doctory at HarborView are good...and I just may look into that. Chelsi will be 14 in March and she's on Keppra and Zonegran. I can't say that drugs have EVER done anything for her. She's continued to have them since she was 10 months old. She averages 1 or 2 T/C's a month, which is 2 too many!Thanks for the link, I will check it out!Sue----- Original Message -----From: SherrySent: Friday, January 18, 2008 8:24 AMSubject: RE: [Cent_Wa_Epilepsy_Support] New Member Sue,
Why is the wait so long? Does she have to go through Children's? My
step-son (he is an adult, though) goes to HarborView Regional Epilepsy
Center. They have specialists in pediatric neurology.
http://pcs.hmc.washington. edu/Epilepsy/ AboutUs/index. htm
The only delay for his VNS placement was waiting on the state to approve
Medicaid coverage of the procedure! His VNS has helped, but he still has
way too many seizures. Besides the VNS, Lars is on Keppra, Lyrica and
Felbatol. He's just starting to ramp up on the felbatol and we've
definitely seen some changes there. However, it's a very scary drug and he
needs regular blood monitoring because of the potential of aplastic anemia
and acute liver failure.
We've been extremely happy with the care and concern that his neuro has for
him. The doc will do just about anything he can to help Lars get the
services he needs! "Nurse Lynne" is absolutely awesome!
Do take a look into the clinic.
Sherry
-----Original message-----
From: Cent_Wa_Epilepsy_Support@yahoogro ups.com
[mailto:Cent_Wa_Epilepsy_Support@yahoogro ] On Behalf Of SUE OWNBYups.com
Sent: Thursday, January 17, 2008 8:54 PM
To: Cent_Wa_Epilepsy_Support@yahoogro ups.com
Subject: Re: [Cent_Wa_Epilepsy_Support] New Member
Paula,
I so look forward to talking to you in the future. I have a 13 y.o.
daughter with seizures. I don't have much time to chat now, but I wanted to
welcome you to the group! I especially am interested in hearing about the
VNS. We've been on a waiting list for over a year to get into a doctor at
Children's hospital in Seattle to talk about it!
Best wishes,
Sue
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