I don't want to sound like a braggert but I do want to keep you all informed of Katie's progress...to put hope into the hands of others...that surgery is a viable option.
KATIE HAS BEEN SEIZURE FREE 3 MONTHS TODAY!!!
NO seizures OR auras! She's made it through 2 menstrual cycles with no activity before or after and both cycles started "ON TIME", within a day of her schedule! (28 day cycle) No peanut therapy. Hasn't been on peanut therapy since the week before surgery (June 7, 2004).
This is the longest stint being seizure free since late 1999. It is amazing to go ONE day without an aura or seizure, much less 3 months. We have tried not to become complacent nor take any of this for granted. It can happen very easily. I am trying to relax and realize that when Katie calls for me in a certain tone of voice now, it's not because she has the aura or feels a seizure coming on. I have never told her, all of these years, that she indeed had a certain tone that would alert me.
Katie is doing SUPER...physically and emotionally. She lost the 10+ pounds she put on between the 2 surgeries due to the limited activity she was allowed. She started power walking the middle of July. How nice to have 10 pounds drop so quickly! UHG! To be 16 again!
She is back taking piano lessons and has a week of school under her belt. So far, so good. A few bumps in Algebra II/Trig. Didn't realize they started with a little bit of Geometry, which was her nemisis last year. But she told the teacher about the month of school missed, back in April with the first surgery, so she will get a little extra help here and there. He's a super nice teacher! The kids are really enjoying the new school, so far. A little more relaxed than the previous one.
Our faith remains strong and we remain hopeful for the future. Katie has an EEG set for September 24th at 7:45 am. The Epi will compare the previous EEGs with this one and see where her brain activity level is at. Then we have an appointment set for October to meet with the Epi to discuss our options. Start to remove meds at that point, wait until Christmas break (my thought), wait until the end of the school year, etc.
By Wisconsin law Katie can take drivers ed now. Seizure free 3 months. We are not pushing that right now...at all. It would make my life MUCH easier since a ride to school is an HOUR, round trip for me. BUT, Katie would never forgive herself if something should happen to Andrew, while she was behind the wheel. I told her that she has been SO patient all of these years...6-8 more months is nothing. I told her to tell the kids at school that we said she had to be 17 to get her license. Blame it on us, for conversation sake. Actually, that is how we feel, as parents. My husband and I were both 17 when we got our licenses and feel we were more mature waiting the extra year. It wasn't because of our parents, it was our choice.
Thank you all for your care and concern for Katie and our family. Who would have ever known this is where we would be. There are days I can hardly believe the surgery is actually over, that we are actually on the other side of it all.
I am so truly thankful...there just aren't enough words to express our gratitude. GBTG!
Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.
Has it been three months already? Wow. It doesn't seem like it should be that long. I am so happy for all of you. Congrats to Katie. Taking everything one day at a time is a great way to ease back into the swing of things. I wish you continued success. Phoebe
I am so happy for Katie and your family, brag all you want. She deserves it! I can understand thinking about waiting for the holidays to adjust her meds. we are at the next step now and I am scared to send her to school, I think we'll start it on the weekend.
She has plenty of time to drive, and your right, blame it on the parents. I personally think everyone should be 17. There are more cars on the road now, compared to when I started driving!
Keep us posted on her progress. Again, I am so happy for her.
What fabulous news!!! I am so glad that she is doing well...
My 2 cents on the med wean? The best results I have read are from those who DO NOT TOUCH meds for one year post surgery...DO not know why that is the magic number. If she is doing so well, I would wait for the school year (flu season, too) to be well over. JUST my opinion, though!!
Great idea on waiting a touch for the driving. We also have a long drive for school for Anna. 1 hour 20 minutes round trip for me, UGH>.. it is tough, but that would also be a LONG 30 minute drive for a new driver too....
Thanks for the update! Jumping up and down for joy along with you!!!! YAY for Kate!
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mom of 2 teens who have battled seiuzres.
I have read the same info on holding steady with the meds for up to a year also. There was a comment made in regards to why they might be willing to move sooner with Katie, only there was sooooo much info flying at that appointment that I don't remember specifically WHY. I don't know if it was because they felt confident in the removal, her type of seizures, all of Katie's test results...
As far as I'm concerned, we have to pay for a full bottle of pills or half a bottle. It doesn't matter. We aren't saving any money and we know Katie is ok with the meds (minimal side affects), so why create another problem, after coming so far. We'll listen to what they have to say. We really don't want to do anything SOONER than Christmas break. I'm not sure how long of a wean we're looking at with the 3000mg of Keppra. That's the one she wants to work on first. She's also on 400mg of Lamictal daily.
We'll see...I'm not in any hurry, really. The slow but sure win the race...
Thanks for your well wishes, comments and you stay safe on the road too! I thought I had it rough at the one hour mark. I don't think my bladder could take an hour and twenty! I'd probably have to become good buddies with the Citgo station along the way...
Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.
Another month has gone by and we celebrated Katie's 4th month of being seizure free, post surgery! She just finished another menstrual cycle (2 days late) and made it through without seizures or auras. What an incredible blessing!
We have the Epi appt. on October 20th to go over the EEG and what the months ahead hold, so I'll be back to fill you in. (I'm sure I'll be back sooner than that tho!)
Take care and we continue to pray for our E board buddies...you know who you are!
Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.
We hit another milestone this month...5 months seizure free!
Katie is doing super. School is going well (with the exception of two classes where she has a very low B or C average) and she has made some nice new friendships.
She is trying out for the basketball team tomorrow and has been getting back to TaeKwonDo, for exercise. Andrew received his "numbers" from his first season of football, that was cool. And they both finished helping with the school play last night.
We continue to pray for our E board buddies and realizing every day without a seizure is an awesome day!
Giving thanks daily and never taking this incredible gift for granted...
I wish all of us a month where E awareness reaches the minds of many and that ignorance is erased.
Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.
Thanks for the update on Katie. Good luck on the try outs! I'm sure she is so glad to be back doing the activities she likes. Thank you for keeping eveyone in your prayers, we also continue to keep Katie in our prayers. Thanks again for all of your help.
I am just finishing my testing to see if I am a surgical candidate. I would love to chat with you about the surgery. Did you daughter have the WADA test?
Today marks Katie's 6th month of being seizure free! It continues to amaze us. She is finished with her Keppra (as of Thanksgiving morning) and is on Lamictal as monotherapy. The first time in 4 1/2 years that she has been on monotherapy.
I hit a little bump in the road last month. I had a biopsy done on a mole that we have been "WATCHING" for the last 6 or 7 years. The dermatologist said it still looked fine and I said I was tired of watching it and he agreed to remove it. WELL, he said any time something is removed it needs to be sent to be looked at. He said it should be fine and that I would hear from him if we needed to discuss anything, otherwise he would send a letter in the mail. The removal was Nov. 30th and I came home to a voicemail (last night) from the doctor himself, asking me to return his call. What a lovely feeling I had in the pit of my stomach! I called at 3:00pm and he didn't get back to me until 5:30pm.
The mole was "suspicious" and had 3 of the 6 characteristics that aren't so good. So, we need to remove more area to make sure we get it all (about the size of a quarter, as deep as the fat layer and sutures to close). I'm scheduled for Dec. 28th. It is in an area that got NO sun, EVER! You need to watch those moles!!! It is located on my "baby pooch" above the crease of my upper left thigh. A very diffcult spot, and tender. I think we have gotten to it in time, but it was the fact that I insisted that it be removed, that put me where I am. Another check in the corner for being proactive/aggressive on your own part!!!
Take care all...haven't seen some of you guys on in awhile, but I've been thinking of you.............
Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.
I'm so glad about Katie's continued success. I hope Bonnie will get on just lamictal soon. We are going to try decreasing the trileptal again over the holidays. We have the lamictal up to 100mg in the morning and 100mg at night. I was a little worried about decreasing the trileptal during exams so we are waiting for the holidays.
I know that feeling in the pit of your stomach. Two years ago I had some melanoma removed from the top of my nose. It was just some brown spots. It didn't look like what I thought it would. We had taken a biopsy a year earlier and it didn't show anything, I guess that was wrong. The surgery messed my nose up but thats a small price to pay. I haven't had any problems since. I had to wait a year before insurance companies would talk to me for health insurance.
It's good you caught it early and took charge of what you wanted done. Best of luck.
Thanks for the supportive comments regarding the mole/melanoma. I should have had it removed 3 or 4 years ago!!! I'm really mad now that I know how easy it was to have done. UHG!!! A little shot of nummer, they cut it out and you care for it awhile...big deal. Now I have to go through a BIGGER deal. I think I'm going to ask for anything suspicious to be removed. I'm really most mad at myself, for not asking sooner. Why watch something like that? I'm super glad to hear that it all worked out well for you too...that is the most important thing. Insurance woes, what are you going to do. Been in that boat since Katie's diagnosis. You know...
I've been thinking about Bonnie! How's school going for her? We have gotten more recent feedback on Katie. She does seem to show some short term memory issues. Right now we are working on reinforcement techniques. Reread, go over, etc. The teachers have been so patient and kind, we are very grateful. She also seems to be working on developing a "boyfriend" situation. This would be a first. Andrew says "he's a good guy"...that helps, I think. And, like Bonnie, he's a Senior. Why not shoot for the top, right?
Take care and thanks for checking in on us...wishing you all the best and hope you had a Happy Thanksgiving...it definately had an even bigger meaning for us this year.
Vicki
p.s. Good idea to wait until after exams and during a break to do the decrease of meds...
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.
I am so happy for you. I have gone 1 week, and that is good for me. I am 27 and I have epilepsy, I do doctor at the Mayo Clinic, as a mother I have a favor to ask of you. I am a mother of 2, and I am married. My family is wonderful although this is new to us. Since April I have had over 150 seizures, and well I am going to ask for your help in educating me. I am on 3000 mg of Keppra, and 500 mg of Dilantin a day.
I am more than happy to help you with whatever you need...I have a few questions for you...
1. Which Mayo are you at? Minnesota? Are you seeing an Epileptologist?
2. What type of seizures do you have? Anything that sets them off? (lack of sleep, stress, lights, hormones, etc)
3. Did you have an injury? Or did they just start out of the blue?
4. Have they said why so many seizures since April? Do you have auras? (feelings before a seizure) Do they come in clusters? (where you have a short time without, then they come many in one day)
5. Do you notice any difference around your menstrual cycle at all? (more seizure activity)
6. Are you happy with the information you are getting from the doctor? Are they attentitive to you? (especially since this is new, are they answering your questions) You can request a social worker or psychologist from the clinic, to sit in and help, if you feel the need. Make sure they have worked in Neurology before tho. The clinic should know that, they usually have one that already works with them.
7. Have you started reading info online? That is one of the best things to do.
If you can please fill me in...and it is wonderful to know that you have the support of your husband and family, that is THE most important thing. Stay strong, keep your head up...and one day at a time...congrats on ONE WEEK! That IS a big deal...celebrate it!
Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.
Sorry, I've been gone so long! Wonderful news about Katie, I'm so glad it has worked out so well for her. Now you say you have noticed some issues with memory? Nothing major I hope?
I'm sorry to hear about your situation. December 28th is when you go in, right? I'll keep you in my prayers!!
Are you ready for Christmas? My kids have their school play on Tuesday, I can't wait.
I've missed all of you guys so much, but I just don't have the energy to get everything done. I sleep so little that when I do finally sit down in a chair I fall asleep instantly. My Topamax has been upped to 300mg and has been really difficult on me. Memory wise, eating wise (lost 40 lbs so far), fatigue,on and on.... but enough whining I just wanted to touch base with you and tell you how happy I am about Katie!!!
Take care Hon!!!
Lisa T
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Everyday we learn something new! It may not be important or news worthy, but it should remind us all that no one knows everything!
*Katie* 3 Month Mark!!! Seizure Free! 
Re: *Katie* 3 Month Mark!!! Seizure Free! 
Re: *Katie* 3 Month Mark!!! Seizure Free! 
HAHAHAHAHAHAHAHAHAHA!!! 
My Topamax has been upped to 300mg and has been really difficult on me. Memory wise, eating wise (lost 40 lbs so far), fatigue,on and on.... but enough whining 
I just wanted to touch base with you and tell you how happy I am about Katie!!!
