Hi Guys,

Sorry I wasn't on sooner, we had computer problems yesterday. The keyboard and mouse kept freezing up. My husband had to look at it. I'm not totally computer savvy.

Well, we are now officially on the other side of the procedure! Katie was a TOTAL champ! She got to have a number of her favorite nurses while she was in, it was really sweet. She even had the same male OR nurse from the subdural strip surgery in April. He remembered her/us. Even asked if she had her angel pin on again! Can you believe that? Katie said yes and he said they would take good care of it during surgery. She was allowed to wear it on her gown during surgery again. For those of you who may not know, the angel pin that Katie wore for both surgeries was an identical pin (two that came on one card-you to keep one and give another to someone else) that she placed on her Grandpa's suit lapel, when he passed away 2 years ago. She kept the other. Also, the same neurosurgeon operated on her Grandpa a few months before his death. So it has been quite moving to have the surgeon work on first and third generations.

Here's the low down...I slept about an hour the night before surgery, funny thing I wasn't really even nervous, I think it was more adrenaline/anticipation than anything. Mike slept 7 hours, as did Katie. She was very calm when she went to bed. We prayed together and said that Katie had a whole new world ahead of her. She was humble and very thankful, as she has been the whole time. She was excited and didn't cry one tear.

Morning came, 5:30 am to be exact. She had her meds and her last drink of water. I got ready, then Mike and Katie. She went back to sleep for another hour. We left the house around 7:10 am and were in Day Surgery by 7:30 am. Come to find out our NS (neurosurgeon, from here on out) was stuck in traffic! So, we had Katie all gowned, urine sample etc. and were in a holding pattern. We played cards as we waited. We were all doing fine. Finaly got the call around 8:30 am to head down. Surgery was suppose to start at 8:30 am. Got down to OR holding and they did last minute vitals and gave her Verset (the relaxer) and she started to get a little groggy. Same stuff she had the last time. Our NS came out to talk with Mike and I and he held Katie's hand and asked if she was ready and Katie said "OH YEAH! I'VE BEEN WAITING ALL MY LIFE FOR THIS! LET'S GO!" We all laughed. Then I gave the NS a hug, he said he would shake Mike's hand rather than hug him, we laughed again and he said he had to go get ready and he'll see us again soon.
We prayed with Katie again, she was calm, we didn't cry and we said we would see her on the other side of the surgery. We were at peace. They rolled Katie away around 8:50 am.

The OR nurse (Jim) said he would call the waiting room (WR, from here on out) when the procedure was started. We got the call at 9:25 am that they had already opened the skull and were working on her. That about made my legs turn to noodles. He said Katie went under anesthesia fine and was smiling and joking until she went under. He said he would call again when they were further into the surgery. We got that call around 10:30 am. He said Katie was doind well and had minimal blood loss so far and that Dr. Mueller (NS) said things were going as planned. We told Jim to send our regards to Dr. Mueller and to touch Katie's hand for us. He said he would certainly do that and the next time we would hear from him was at "closing time". Maybe around noon or so. So as far as we knew, we had another hour and a half before we got a call. Mike ducked out of the WR around 11:25 am to run down to the cafe to grab a juice for he and I and wouldn't you know, Dr. Mueller comes in asking for "Katie's family". I look up and realize it's him! HOLY COW! It was 11:30 amd and the procedure was DONE!!! The NS resident was closing (staples and wrapping). Our NS asked where Mike was and I said he had just left to get some juice for us. The NS took me into a private consult room and said the surgery was over, Katie did well, he got to what he needed to, he took a little more from the frontal lobe (to get to the deeper part of the Hippocampus), Katie had minimal blood loss (100cc-about 1/2 of a cup) and required no transfusion (so none of the donated blood was used), and that she would be in recovery for an hour and go down for a CT scan to check for bleeding/swelling thereafter. They would let Mike and I see her in the hall before taking her to CT. I told him how thankful I was and he said, "Don't mention it, she's a lovely young lady, I was happy to be a part of this". I cried a little then. Mike came back just in time to catch Dr. M. at the door. They shook hands and Dr. M. asked that I fill Mike in, but did say that Katie did very well.

Mike came in and sat down and we looked at each other and couldn't believe it was OVER! 2 HOURS! We were told up to 4 hours. What a relief! Mike cried. We sat in the WR until Jim, the OR nurse cam in to tell us we could see her. We went out into the hall and she was laying flat, had oxygen on, both of the Anesthesiologists were with her and the NS resident (Dr. Andrew, from the last surgery) and Jim. Katie was a little groggy but when I asked if she could hear that it was me, she nodded slightly. We shook the hands of the Anesthesiologists, Jim and Dr. Andrew (I hugged Dr. Andrew) and they all said Katie did extremely well and the CT scan looked good. So we had to go back to the WR to wait until they got her situated in the PICU (pediatric ICU). That took about an hour. By now it was 1:30 pm or so.

Katie as on ALOT of morphine the first 2 days, then as needed (if requested by Katie with ok of nurse). She was off morphine completely by Wednesday am. The first 2 days were long and a little rough. She had her period and a catheter ontop of everything else. Poor thing. She had an MRI on Tuesday morning around 7:30. Our NS came in (in the afternoon) to tell us the MRI looked great and that he got all of what was needed. We said "good thing, cause we're not doing this again!" Dr. M. said, no need. We all smiled. Katie was moved from the PICU to the EMU around noon on Tuesday, not even a full 24 hours in the PICU! She was doing well. They allowed us to have a room in the EMU because there was one available. It was the room right next to the other we had been in twice. Extra window and a great view out to the horizon. Katie continued to do well on Tuesday unto Wednesday. Morhpine done in am on Wednesday and her head was unwrapped by Dr. Andrew (we can't pronounce his last name, it's Polish, I apologize to any who are Polish, don't intend to offend). Got the first look at the staples...35 to be exact. Good thing she had some with the first surgery, so I knew what to expect. It was a little gruesome looking. Dr. Andrew asked "is mom ok so far, we aren't losing her are we?" Katie and Mike laughed. I did fine! Honestly! Not even a tinge. My legs felt most noodley when the OR nurse told me they has just opened the skull, that really got me. The staples looked good so Dr. Andrew said he wanted katie to start some soft food, drink more and to get out of bed in the later afternoon. They had already removed the catheter on Tuesday am when she went for the MRI. So we were using the dreaded BEDPAN. YUCK!!! By the time Mike stayed the night Katie was able to walk to the bathroom, all he had to do was stand next to her and help a little with her undergarments, (because of 3 IV's coming from places).

Wednesday late afternoon our NS (Dr. M.) came up to say that Katie might be able to leave sometime on Thursday if she met 5 criteria. 1.) Had to walk the halls 2 more times Wed. evening 2.) Had to keep 2 meals down 3.) Had to be off the IV's with enough fluid intake orally 4.) Have good urine output 5.) Have a bowel movement. We were told to expect swelling by Wednesday, and it never really happened. She had a little under her left eye and around her left temple, but that was it. We were told her whole left side of the face could swell up, her eye could swell shut (look like a bad boxing match) and she did FANTASTIC! She actually had more swelling with the subdural strip surgery.

Thursday am rolled around and Dr. M. and Dr. Andrew were in at 6:45 am and said Katie could go home if she kept breakfast down, the rest was fine. She didn't have the bowel movement, but they told me what to feed her and do, so he said he would write the orders for release, as soon as Neurology came in to check her out (Dr. Zupanc, our Epi). Dr. M. said Katie held the record for Craniotomy release, 75 hours in the hospital!!! After Dr. M. left, Dr. Andrew told us that Dr. M. is usually conservative with Craniotomy releases, but he feels strongly that Katie is fine to go home. (plus they asked how far away we live, and we said 20 minutes). So, Dr. Z came up around noon, we all hugged (she even hugged Mike, and she hugs tight and long for the wispy 5' 2" thing that she is, no wimpy hugs there) and we were out the doors by 12:45 pm.

PART 2 FOLLOWS TO NEXT POST

PART 2 (and I figured out how to do it without losing anything!!!)

All of Katie's neuro exams were good in the hospital and Dr. Zupanc feels that Katie will recover well. She gave me a little business about Katie's memory, on Wednesday night, when she came up to check on Katie. She said you can't always go by the Neurophysch report as far as outcome. She asked me how I tought Katie's memory was so far, and it was and has been fine. She remembered from day to day what nurses she had, what the different doctors talked to us about, she knew what the 5 criteria were in order for her to be released, she seems fine so far. We are glad to be HOME and on the other side of this.

My eyes are getting a little buggy, so I'll stop for now, and post again tomorrow about Katie's days at home so far. We have now been at home, as long as she was in the hospital! Can't believe it!

Katie just tried to call Ashley and she wasn't home, but her Dad answered and was thrilled to hear Katie's voice. He said the whole church was praying for her (he's a pastor). He said he wouldn't tell Ashley that Katie called, so it would be a surprise when Katie calls again, in another hour or so.

Thank you to all that have prayed for Katie and offered support as we prepared for this, we are truly blessed, more than we can ever begin to imagine. We continue to pray that the eventual outcome meets all of our expectations. However we know, it will be, what it will be.

Until tomorrow sometime...

I now know the strongest and bravest person I have EVER known and I am proud to call her my daughter Katie...

Many thanks,
Vicki

Fantastic! I am happy that things went so well. I really thought they would, but that's a hard thing to convince a person of before the event. I am surprised that it was completed in such a short time. Try and let things flow naturally from here on out. That may feel difficult, but this new post-op period is a time of growth and change for all of you. Remember when I mentioned that the pre-op process reminded me of preparing to have a baby? Well, the baby is here, and it is a change for the family. I think you may be able to find some similaities in there. Regarding memory and other progress, time is a big factor, and the changes Katie may experience may be so subtle that she may not notice. Memory should improve from what it was even before surgery, I think, over time and with the stimulation of a full daily life. Try and take things one day at a time, and if ever there was a time to practice that, it may be now. I am so glad you are home and safe. This has been some journey, and I am happy to have been a part. Phoebe Kay

vicki,

oh my goodness. please dont be offended when i say this, but i have absolutely nothing to say to that. i really think you said it all. there isnt anything i could say that hasnt been said already. sort of hard to explain. like i am at a loss for words from utter relief.

i have been checking every hour or for your new post and i literally cried when i read those two. its almost like a serene calming has finally come over everything and i am so happy for you. i know people had thier doubts about this procedure but you are her mother and you did exactly what you felt was right. kudos to you.

i know i dont know katie but would you please tell her for me that what she did was the absolute most bravest and noble thing anyone could have done for themselves. she is indeed the stongest person you know and i am so glad i found this board and was able to be a part in a true miracle. god bless you all.

:bouncing: :bouncing: :bouncing: :bouncing:

Vicki and Katie
I am sooooooo glad to hear that things went so well and are continuuing to be well that was such a relief to hear I feel a little better now after reading your story from beginning until now about this whole procedure as you know this is something that I my end up doing myself. Katie must be one amazing girl you both are sooooo lucky. take care and keep us posted

Katie & Vicki, :wave:

:bouncing: :D :bouncing: :D

WOW! is the only thing that comes to mind and that is sssooo lame! I sat at the PC this morning at 6:00 AM bawling with HAPPINESS for you! I couldn't even post... and I'm still tearing up reading it the second time!!!

I can't help but feel that God has great things instore for Katie (as I'm sure you do too). That this is all part of the Divine's plan!

Thank you so very much for sharing your extrodinary journey with us here. We so hope that Jake does not have to go through this, but knowing others who have went before offers great comfort...

Life is meant to be SEIZED! I use that word with intent and hope for all those who post here!

Keep us all posted as life unfolds anew for your family!


Love and light,

Lisa and kids

Hi all,

Katie has been doing just SUPER since the surgery. She has not suffered any memory, optic, or right side strength issues. All are A-OK!

She left the hospital with a scrip for Tylenol3 (w/codine) and we never filled it. She's been using regular Tylenol for the headaches she ocassionally gets. Maybe one per day. She does like it more quiet though. Loud noises both her.

Her days and nights were messed up for almost a week. Almost like having a newborn in the house again. She had to nap during the day when she got tired, so it messed up the nights. She was waking up at 3 am and staying awake until 6 am and back to sleep. The docs told me to let her do what she needed and it would all iron itself out. It has. This is the second day without a nap and she slept through the night with no problems.

She's feeling better every day. Laughing, cracking jokes, getting on her brother's nerves, mine ocassionally...but I am VERY happy to have her on my nerves! I won't complain. She has just been amazingly strong.

We had an appointment with the neurosurgeon today and he removed the staples. Katie said a few of them hurt this time, coming out. Well, she had almost double the amount. But she held my hand, we asked questions to Dr. M and that kept her occupied. It was done before we knew it. She looks a little gross...in need of a good hair wash (tomorrow) and scalp scrub. We haven't decided what to do with her hair yet. Don't know if we should shave it all or just cut the other side of the head real short and have it all catch up.
That's probably what we'll do. I found super cute bandanas at Walmart before her surgery. Palm trees, flowers, stripes, really cute ones that she can wear to school in the fall.

The NS asked if Katie has had any seizures or auras and we said "no", VERY QUIETLY...they said if she had any over the first 2 months, they don't count. Just the brain returning to normal placing. He holds high hope for Katie. He said to her today, "Hey kiddo, I think the world of you, and I really mean that," and I got tears in my eyes. I told him we are thankful to him more than any words could ever express. We see him weekly for the next 7 weeks.

She did come home from the hospital on her full load of meds. They won't adjust anything until July when we see Dr. Zupanc for a check up. I have a feeling she'l be working her off of the Keppra first. When they wrote new scrips for us, upon leaving the hospital, they wrote for the larger mg of Lamictal (for less tabs to take), but left the Keppra at the lower mg (which means more tabs to take). It gives us the flexibility to come down off the Keppra.

Jennifer mentioned it best, there is a serene calming within our family. The edge has been taken off and now we wait and see where this all takes us. There are days where we just can't believe it is over, and that we are on the other side. One thing is for sure, we will never take this for granted. Katie has been given a gift, and she realizes that. I know in my heart, she will work every day at repaying the grace she has been given. She has shown her gratitude to everyone involved, including thanking Mike and I a MILLION times, (at least nearing that number) for doing this for her. We told her we would do anything for her...absolutely anything.

And it was with God's guidance, that we were able to do so. We give thanks.

Thank you all for being a part of our "little miracle" (thanks Jen)...and my profound thanks to Pheobe (K), for making the post that set me in motion nearly 21 months ago. I pray for all good and great things for all of our children. And just remember...NEVER give up hope.

I'll keep you posted as we move forward...

Vicki

Katie and I continue to pray for Gage, Jake, Jenny, Bonnie, Jessie, Megan, Robert, Lisa T, and Crystal...we are lifting you up!

Hope you feel it...in some special way. :angel:

Vicki

Hi Vicky & Katie

I have been looking daily for your return. Wouldn't you know my dsl was out for the last 3 days! I am so happy with the good news! I am so glad she hasn't had any seizures, our prayers answered. She is such a brave, special girl. It is so uplifting to hear her story. Maybe one day we will be going through this with Bonnie. I really am speechless, just very very happy for you. You have touched our lives and hearts.

Debbie :bouncing: :bouncing: :) :) :angel:

SO Good to hear how your brave girl is doing! I have heard from adults who have been through the surgery that the best results are when meds are left the same until at least one year after the surgery.

I do nto know if this is the same in the pede world.


So good that she is doing so well. I am sure there must be a serene calm. Hoping for NO seizures even in these first 2 months....


Prayers continue!

Vicki,

Thanks for your continued updates! What a relief your family must feel. There are days that I think what would I do with all the time I spend on research, drs appts etc... and I'm just not sure!

Keep us posted. I hope to post an update on Jake real soon. We see small changes daily. No earth moving, one time event to date... Just slow steady progress...

Love and light to ALL our children!

Lisa and kids

Hey LisaG,

Thank you soooooo much for the comments regarding Katie...I feel He has some awesome plan for Katie and we can only wait to see!

I posted to Jenny tonite too. I hope she does well on the Carbatrol. Taking meds twice a day makes life a little easier!

Take care and I will look for the update on Jake, Katie and I are praying for Jake and Jenny. Thanks for all of your support, your kids are lucky to have you for a mommy too! ;)

Vicki

wow!!! I'm soo soo soo HAPPY for Katie and for your family!!

CONGRATUALATIONS KATIE! :wave:

You are a complete trooper!! Talk about tough girl, haha. And you family seems to be holding out great as well.....the trooper family i call it! I've been following all of the posts and i must say, they make me feel warm and connected inside. The doctors seem very caring and generous, how nice it was to have the same doctor twice for katie. An yes......I laughed when I read about the polish pronouncation, I am part polish, so wow, those last names sure can be difficult...lol.

I wish Your family the BEST!! Katie is a very strong girl, and you are a VERY strong mother. I'm sure she has learned it from you! keep your spirits up!!! :angel:

can't wait to hear more
Julia
xoxox

oh yes......haha, I was teary-eyed when i read the posts. And ask ANYONE that is VERY rare for me. I don't cry or get teary-eyed often at all!! Only when is special and necessary. Tears of joy too! ;)

Thank you Julia, I appreciate you following our journey....we can hardly believe the "hard" part is over. Now we enter the "wait and see" period, which may be just as hard. We have up to 6 months before we will know where Katie stands.

I appreciate the kind words for katie and will have her read some posts today.
She has been blown away by the concern of people on the boards. "They don't even know me," has been her response. I told her that in their own way, they do.

And the Polish name thing...Dr. Andrew has every known consenant in his name! And probably doubles! It's pretty funny...we must not be the only ones that call him Dr. Andrew or Dr. B. And guess what? He was born and raised here, he didn't come from abroad.

Thanks again and continued good luck to you as well... :)

Vicki

I read your post re the removing of her meds. I am extremely surprised this would even be considered this soon after surgery. You do not want anything to happen to allow those healthy cells now not being stimulated by seizure activity to remember how to do it! They will remember easily especially since the area removed is also associated with memory. They have to learn how to function without the sz activity. You have to consider what the main objective was and never lose sight of that no matter how much the doc wants to see his/her success realized and no matter how much you may want Katie of meds. I think that you would be more disappointed if acting too hastily re the meds caused anything to occur that could jeopardize the ultimate success of her surgery. I feel sure Katie would be. That directly affects only her. Also and more importantly, what does she think? How did Ashley's doc handle this and what were the results? Even though no two cases are alike, I suggest that she talk to Ashley and you to Ashley's mom. Phoebe

Hi Phoebe,

The doctor didn't say they would in stone, it was just my thought as far as why they wrote the scrips the way they did. I know she (Epi) mentioned the high dose of Keppra Katie was on, but I don't think we will be having a med change any time soon. I should have wrote that differently in my post. We were told up to a year, with the possibility of a decrease before that, but not guaranteed. So we (and Katie) do know we are in this for the long haul. We have NO expectations at this point, as we are only 13 days post surgery. We need to keep the brain nice and calm so it heals properly and the healthy cells forge a nice new barrier so there is no cross over.

We wouldn't do anything to cause a problem because we want to save the extra $50.00 a month in med copays! Noooooooo way! We know the meds she has been on worked well enough, so that is where we stay.

And come to think of it, I don't remember addressing Ashley's dad about the meds issue (current). He did say she was on meds when she left the hospital, but I don't know where they are at now. Ashley's surgery was January 9, 2004. She is in California now with her school choir for 2 weeks. Hope she's having fun!

Vicki

Hi Vicky
I'm so glad Katie is doing so well. Did she ever complain about the way Keppra made her feel? We are weening Bonnie off of trileptal, now it's just one at night. Starting Friday she should just be on Keppra, 1500 mg morning & 1500 at night. She doesn't like how Keppra makes her feel. She is having several seizures a day. As the trileptal dose gets lower the seizures are getting worse. I am scared to death what will happen when we take her off of the one pill at night. I am going to call her doc tomorrow. I want her off trileptal but I don't know how we are going to do it. Maybe she will just have to take it.


Debbie

Hi Debbie,

Katie hasn't had any issues with the Keppra. She hasn't complained about any of the side affects they list. She does have trouble falling asleep at night but part of that is due to an overactive mind. She thinks too much. We also think it could be the Lamictal.

Other than that, we haven't had any excessive tiredness, headaches, dizziness, balance issues, etc. Unfortunately meds affect people differently.
Katie was sensative to some of the other meds she took. Especially the Tegretol family. She had blurry vision and balance/coordination problems.

It sounds to me as though it's the Keppra that's not working. If she is on such a high dose, and still having many seizures daily, that would be my thought. Katie takes the EXACT dose Bonnie is, every day, and she was still having seizures prior to her surgery. However, they were only 4-6 (complex partial) per MONTH. She did have simple partials, some days 0, other days 2 or 3. She averaged 30-40 per month of those. So, we thought the Keppra wasn't working well enough on it's own so we added Lamictal in October 2003.

Keep me posted, we are praying for Bonnie. Are you going back to "NO" to see the doc again before school starts? We wasted so much time, years with the same neuro. Please check into that doc again (see if she was an Epi) or check into the University of Texas-Houston where our Epi's assistant did his Epi fellowship. He mentioned a doctor that he worked with that has been there awhile. I forgot the doc's name though, we had so much going on in the hospital.

Take care,
Vicki

Vicki and Katie..
I am so thrilled to hear that everything is going so well ((((())))) Its taken me days to post, because I could find no words to express how I'm feeling and here I thought I was ready.... but I find myself in tears yet again.... so even though this is short.. I send it with much happiness and joy... may God continue to bless your family :wave:

LisaT

How is Keppra making her feel? It could be that the level isn't high enough yet. Where is she in the process of increasing the dose? How many meds has she been on already and has her Epileptologist mentioned surgery as an option?
Re the insomnia, Keppra does that to me. I have to take it earlier in the evening rather than late at night. I will keep me awake. It reminds me of taking an antidepressant late at night. It will keep you awake due to the ations of thr med.. I take my p.m. dose of Keppra no later than 8pm. Hasn't been a problem at all. Phoebe

Thank you Lisa T...we appreciate the kind thoughts and we do feel truly blessed, every minute of every day that Katie is seizure free.

We see the neurosurgeon tomorrow again, so I'll have another update for everyone...

Thanks again, you have been with us from the start and I appreciate your continued support and taking the time to drop by and post... ;)

Vicki

Hi Vicky and Phoebe

Well I talked to her doc again today and now we are increasing the dose of trileptal again. We were down to only (1)300mg at night. As the dose of trileptal got lower she had more seizures and they were becoming longer. I was very nervous as to what would happen after Thursday when she didn't have any trileptal ( although this is what I wanted - no trileptal) She is having at least 4 seizures a day( she doesn't remember some and sometimes she just doesn't tell me). Now we are to add 1 trileptal in the morning for a week and then add 1 at night. After the first week we are to cut out 1 of the keppra's in the morning and 1 at night and then the same the next week. Then we are going to talk about putting her on Lamictal. We see the doc on the 9th.

I'm not sure what it is she doesn't like about keppra she just says she doesn't like it, doesnt like how it makes her feel, she can't explain it. Her vision does get blurry, she stays tired, sleeps all day if I let her. Her stomach has been hurting the last couple of days and she looks terrible,says its hard to breathe when this happens but not like asthma( she has mild asthma also ) maybe seizure related cause she is emotional when it gets like this.

Bonnie started out on Carbatrol, took it for years til her period came last Jan.
Then increased the carbatrol - things got worse
July/Aug last year changed to trileptal
Gradually kept increasing it
Nov added adderal - to counteract the side effects of trileptal & seizures BIG MISTAKE!
Dec took her off adderal lowered trileptal
Feb took off trileptal over 3 days for VEEG, grand mals in hospital
Added trileptal back
March Put her on Keppra w/ trileptal (this worked best) added birth control pill
May Took her off trileptal too quick - grand mals, bad seizures daily
added trileptal back
Started increasing keppra so as to take trileptal off ( had seizures daily)
June 5 started lowering dose of trileptal (more seizures daily and became longer ones as dosage decreased) took off birth control pills

I also added some vitamins and peanuts. It's a fight to get her to take them.

I don't know if it's the wrong dose or the wrong med, nothing seems to work anymore.

The doc at Childrens Hospital acted as if we needed surgery after the VEEG. Then when she did the MRI she said it didn't show where it was so we couldn't do surgery.

How high of a dose could she be on of keppra? She was already taking 1500 in morn and 1500 at night plus the trileptal 300 in morning and 600 at night. As the dosage was increased her vision was affected more.

The doc said it takes longer to get on Lamictal. I was hoping it would be straight for when school starts.

I'm looking forward to the update on Katie tomorrow. I'm so happy for ya'll.

Debbie

Hi Debbie,

Can you tell me what it is (was) about the Trilepaol that you and Bonnie have issues with. What does she experiance for side effects.

We particapated in a the Novartis/FDA drug study last summer for Trileptal in children under 3 years of age. Currently it's not available to kids under 3 in the US (although some drs are beginning to perscribe it). Jake has been on the max dosage Novartis would allow for several mth. We are in the process of weaning him from it using the Ketigenic diet, down 1/2 in a little less then 2 mths. I know that there could be balance issues, his neuro and EIP have both said they wish that he had been walking before we started it to see if some of his wagger/stagger walk is med related.

Just wondering if part of his speech delay could be related to this med?!?

Thanks,

Lisa and kids

Hi Lisa

I read your post last night on lowering meds. It was late and I was going to reply today. The turning in circles stuck out to me. Bonnie, she is 13, has done that when having a seizure.

I don't know if my reasons for not liking trileptal are legit or not. I am very suspicious though.

Bonnie has always been a straight A student, never had discipline problems at school, liked by all kids and teachers(usually teachers pet), class favorite, homecoming queen, etc. When we started her on trileptal things just started changing. Her grades started going down (she didn't care about them anymore either, where as before she would cry if she made a B), she would get punish work in school, she got kicked off the cheerleading squad (not necessarily all her fault), wanted to hang with the wrong kids, etc. She just wasn't as nice to others as she really is.

She would be very defiant with me, tell me no if I told her to do something( if you told her no for anything she would become inraged), became suicidal( was always saying she wished she would die), very depressed, blurred vision, tumbling skills not as good anymore.

When we added adderal to counteract these issues they were just magnified.
Part of the school issues were because of a couple of teachers and not necessarily Bonnie so I'm not sure how much was meds and how much was the school. The school was putting a lot of stress on her by watching her, basically one teacher was stalking her,and that can cause more seizures. The extreme behavior was at home.

When we took her off the adderal and lowered the trileptal behavior issues got much better but she was still having small seizures.

We took her off trileptal starting on a Friday and last one Sunday morning, we had the VEEG on Monday. Well she had her first Grand Mal in the hospital. She was having them every 2 hours. They had to give her valium and another E med (dilantin I think) to stop them. She had never had this kind of seizure before, infact the doc was sending us for the test to make sure it was seizures and to find out what kind! Until that point her eyes would turn to the left and her head would turn also sometimes.

We put her back on trileptal until we got her dose of keppra up enough to switch her over. Again when we took her off of trileptal(again too fast),she started having GM's and her other CS were much worse. We put her back on trileptal and increased the keppra. We then started weening her off the trileptal and the S's got worse( not GM's just more often and lasting longer)as the dosage went down. Because of this I was really afraid the GM's would start again after we took the last pill away so they started her back on trileptal today.

I just really wonder if the trileptal is so addicting that she can't come off of it or is it just that her seizures all of a sudden became this bad. When we took her off carbatrol each summer in the past ( to see if she had outgrown the seizures) she never had GM's. Maybe I panicked too quick this time but I don't ever want her to have those kind of seizures again! Maybe she wouldn't have had any GM's, but with her seizures gradually getting worse I was scared.

The behavior problems were terrible on the higher dose of trileptal. Also, after the first set of GM's and we put her back on trileptal with keppra the seizures quit completely. Then trileptal was taken away,GM's again. Put her back on trileptal and the keppra was increased ( they thought maybe keppra wasn't at a high enough dose) the seizures continued. Why were they controled on the lower dose of keppra and the same amount of trileptal and not now. To me they get worse each time we take away trileptal.

I have put a post on trileptal before but only got one response and they didn't have problems.

On the lower dose of trileptal she got her grades back up and ended with straight A's again. I almost forgot one of the things that was affected was her cognitive skills. She would not do as well on things like testing on a book that was read, math problem solving etc. Her neurologist said she had another patient on trileptal that was having cognitive skills problems also.

Sorry this is so long, just wanted to give you some background on it. I really am very concerned about the trileptal.

Debbie

Hi Debbie,

Thank you so much for sharing Bonnie's story. I had caught bits and pieces of it, but not the whole.

I don't blame you a bit for the panic feeling as far as grand mals go. I simply hate the thought of them!

Jake's started out that way. His first night in the hosptial at 10mths. I had the pleasure of seeing him flat line during one! I have NEVER been able to get that sight and sound out of my mind, I'm sure I will carry that fear to my grave. I've never allowed them to leave an EKG hooked up long term during a stay since then either, come in, get your test and get out!

Funny you should mention the turning circles, I caught just the briefest of eye rolls last night when we were playing just before bed and then the circles... So, I was thinking the same thing. Daddy said he feels Jake's just on the verg of a massive breakthrough. With that said, we are tightening the controls on his diet.

We know there are areas we are out of compliance, an once of juice in a bottle with his meds twice a day, Keto NO-NO... a couple of extra grams of everything at each meal - meaning extra calories again Keto NO-NO... So we are not in a panic, Jake's at one of the very lowest ratios so there is planty of room for improved control!

It's just seeing some of the little crazy things he does. Someone pointed out to me that we have really focused on his hands and fine motor skills during therapy, and wondered if that isn't his preoccupation with hands. That he's trying to comminicate in the one area that we have worked the most in... Who knows!

Thanks for your help Debbie. Keep fighting the good fight!

Love and light to all our children!!!

Lisa and kids

Hi everyone,

Katie had her neurosurgeon appointment today and all is going very well. He is pleased with Katie's wound healing and more thrilled about no "activity", as are we! She also hasn't had many headaches lately and is tolerating a more normal sleep schedule (to bed at 8-9 pm and up by 8 am, with no naps).

He said she can have visitors, limited to local travel, lift up to 10 pounds, and we see him next month (2-3 weeks) with our Epi at a surgery clinic they have once a month. So, we get a little break in the action.

I'm looking forward to getting more info from the Epi at the next appt. As far as what she thinks and what we have to do as we move forward.

Everyday without a seizure is a true blessing...TBTG

Vicki

Hi Debbie,

I had no idea things were such a problem with her meds. I can't figure out why her seizures would be so up and down as well. I saw you decided to take her off the birth control. Have things been different since that was done?

Katie got sick of the peanuts too, but I kept telling her why they were important and she complied. I used it as part of her snack. I only had her taking peanuts the two weeks prior to her period. So she was off when she had her period, off for the first week after the finish of her period, then back on for the next two weeks leading up to her period again. Does that make sense?

I don't know anything about Trileptal. Katie is on Lamictal and it was a 7-8 week process going on to it. Katie takes 200mg am and 200mg pm. At first they increased by 25mg at a time. You need to watch for a rash that can be a sign of Stevens-Johnson Syndrome. Please read this online so you know what to look for. It can sometimes be misdiagnosed, according to things I read. It has worked well for Katie, in conjuction with the Keppra, but she was not seizure free. And Katie's seizures were always pretty much the same. Some may have been a little longer than others, but not by more than 5-20 seconds. The average length was 30-50 seconds.

I don't mean to sound like an alarmist Debbie, especially after what we have gone through. I understand that not everyone's situation is going to end up in a diagnosis for surgery, but it sounds to me as though Bonnie NEEDS a specialist. If you are having those type of problems with meds and her seizures change or are changing, I would think your neuro would step aside and do what is right for Bonnie, by recommending she go to a major facility that has an Epileptologist on board. You have time before school starts and I think when you have your next appt. (July 9th?) you should address this with your neuro. "WHAT IS BEST FOR BONNIE, RIGHT NOW?"

I understand it is hard to leave a neuro that you like, but this is about Bonnie, not the neuro. You can still keep her, but get a referral to a specialist. We dealt with the same type of stuff for 3 or 4 years, which is what lead me to these boards, in search of other options. Look at where we are now, 21 months later. I would never have guessed a part of my daughter's brain would be removed in order to stop her seizures! It still blows my mind.

Don't waste a bunch of time, like we did. If you have decent insurance, make the move. Check things out, make calls to different hospitals, clinics, universities, etc. Contact the Epilepsy Foundation for your area. Start laying some ground work. You won't know what can be done for Bonnie until you set the ball in motion. Search and search and search. Go for it, I sure am glad we did. Even though we don't know what the future holds for Katie, we are very optimistic!

If you would like help, I have the time now...just let me know, I can also ask our Epi if she knows of a collegue in your "area" at our next visit (July sometime). How close to New Orleans are you?

All my best to Bonnie and we continue to pray for her daily,

Vicki

Posted twice , web site not responding

Hi Vicky

Thanks for your help and concern. I feel Bonnie is going down that same road also. I know when three different meds don't work it's not good. Her neuro in New Orleans is very good her name is Dr Tardo. We are about a hour away. When they did the MRI she said we couldn't do surgery. The neuro there did ask me if Bonnie's doc had tried giving the meds 3 times a day. So maybe that is an option. I am going to talk to her neuro here about going back to N.O. I know you have to have a referral from another doc but since we've been there maybe we don't need another one. I haven't seen any real change yet since off of the birth control this is her first period since. I am going to start researching places around here and other options. Thanks for your help, if you can ask your epi if she knows any around Baton Rouge, La. that would be great.
Right now we have good insurance but I don't know for how long. My husband was disabled 2 years ago and we have been on cobra, it runs out in a few months. I am self employed and I have been looking for a policy but when you have a child with epilepsy it cuts down the choices, we have to get her doc to fill out some papers. I know La has insurance for children but it may not cover something like this. But we will find a way if it is needed. Hopefully we will be able to find a policy just maybe have to pay more.
Maybe if I tell Bonnie to just eat the peanuts those weeks she will be more open to it. Thanks for the tip.
I am so happy about Katie's progress, no "activity" is so wonderful. Her sleep schedule is great. I wish Bonnie would get on that. She wants to sleep all day!
I've told Bonnie she needs to read some of these posts. Maybe it will help her to take it all more seriously. Until this year we always thought she would outgrow the seizures. The actual seizures were not so bad in the past, the meds were the problem. Things have changed this year! We started increasing the trileptal and she still has had 3 already today. I think it takes a week for it to get built up in your system.
Thanks again for your help, any info or web links are helpful. :angel:
I keep Katie and your family in my prayers. God Bless

Debbie

Hi Debbie,

Do you know why the doc said surgery wasn't an option? Did they give you a specific answer? Are Bonnie's seizures pretty much the same every time she has one? Other than when they go GM? Have you noticed her eyes moving to one side, head turning to one side or only one side of her body moving (like the right arm or hand only)? Unless they found something that absolutely tells them surgery is not an option, I think you still have reason to go forward. I wouldn't settle for one VEEG that lasted only a day or two. I would ask for another over a few more days. I know you are probably nervous about the GM thing, I know I was too, but you have to stay focused on what you are there for. That was my motivating factor. MANY MANY MANY people are fine when they have GMs and there are people who have them all of the time, without incident.

I found out today that our next office visit is July 21st. If I'm able to get a message to our Epi before then, I will try! She is VERY busy and not easy to get to. I have to got through the proper "channels" for communication. But I will try. She is the person that will know where someone with experience is.

We always had hope that Katie would outgrow her seizures too. As time passed though, the chances became more slim. She was well controlled up until the age of 12-13. That is when he** broke loose. It has been an up and down battle since then. The last 3 or 4 years.

I know what you mean about insurance. We own our own business and applying for or changing insurance is a "paper" nightmare. We had to document everything...which took me HOURS to compile, only to be rejected because of Katie's "pre-exisiting" condition. Epilepsy is one of the health issues that cost insurance companies a lot of money, over a long period of time. We currently have an HMO that we pay $2,000 a month for our family policy. Isn't that unreal? And we still have a $30 office copay and a $25 med copay. ROBBERY! So don't ask if we feel guilty using some of their money for Katie's surgeries...we have paid into this for the last 10 years! That adds up.

I don't know what to suggest to get Bonnie motivated in her helping to manage her E. Have you discussed this with her doc? I know we discussed counseling before, but you need to find someone who deals with E patients or at least deals with chronicaly ill type people. There is so much in dealing with E that people don't even realize. That's why I'm glad Katie is looking into the health field, hopefully they will be more tolerant in employing someone with E. There are many issues ahead...employment only being one. I started to look into the issues over the last 18-24 months. There is a website that discusses people with E and the hurdles that you could encounter. I'll have to check my favorites and see if I saved it. It was very interesting.

Phoebe may know what I'm talking about. If she reads this she may have some input or know of websites too.

Hang in there Debbie, I will do whatever I can do, to help you and Bonnie...
and continue to know that Katie and I pray for her daily :angel:

Vicki

Hi Vicky,

Bonnie's are always pretty much the same, eyes go to the left and progress, depending on how bad they get, head to the left, body turn in circle to left, etc.

They said that since nothing showed on the MRI they couldn't do surgery, they had to be able to pinpoint where it was. They did'nt need to put Bonnie under any sleep deprivation, exercise, etc. She started having Seisures when they were putting on the electrodes (?) and then she had them every 2 hours till they stopped them with med. I don't know that I could put her through that again. They weren't mild ones. She felt she was retarded, ( her words ) etc. The last time she had the GM's at home she said she couldn't breathe.

She could deal with having the little ones since the med doesn't stop them completely but I know that is just allowing them to get worse.

Her neuro in New Orleans was Dr Tardo. She was very good. Check out the web www.medschool.lsuhsc.edu/epilepsy_center/ and let me know what you think. She is not listed as the epileptologist but she is the director!

I was researching some things last night, have you ever heard of taking GABA?

Katie and Bonnie's both got bad at the same time. Good old hormones!

I thought my insurance was bad at $972 a month! I would die if ours was what yours is. All of our savings since he was disabled are going on insurance.
I wouldn't feel quilty either, insurance companies rob you. It's to the point just save your money you would pay them and pay your own medical. That's provided you don't have something major. And who wants to take that chance.

We did talk with her neuro here about counseling and were maybe going to talk to someone in N.O. but things got so bad we couldn't. Bonnie has always wanted to be a plastic surgeon. I guess that is probably out now, unless they completely stop. I just can't tell her that right now. She may change her own mind and then it's her wanting to do something else instead of not being able to do something because of E.

I know this sounds so negative and I don't mean for it to. God also blessed Bonnie with so much. She is beautiful, smart, athletic, great personality ( when meds aren't affecting it)etc. E is something she will overcome.

Thanks for your help I looked into the epilepsy foundation there is not a chapter near here and I have started looking at some other hospitals. I found lots of research trials going on.

Thanks so much, I am so happy for Katie, who knows Bonnie may be where she is in another year.

Debbie

Hi Debbie,

Katie is now 3 weeks post surgery and so far so good...she is healing well also!

I have read about GABA along with Taurine (both amino acids) and their affect on controlling seizures. Information and results have been mixed. I thought about trying the Taurine before the GABA because their were less side affects and areas of concern.

Some of the AEDs that are out specifically target the GABA receptors in the brain, that is how some of the meds were developed. I don't know a lot about it, but some. I thought I read that there are a couple of new AEDs possibly in development or are already, with regard to GABA. I think I read it in my Prevention magazine over the last year.

I would definately check with your neuro before adding GABA. It also does something with HGH (human growth hormone), which I don't remember either. Some of this info must be online somewhere.

I read the info on LSU and the E prgram there. It sounds as state of the art as ours. I guess I would just check into the fact that you had one doc versus another. I noticed that there was a Dr. Shannon McGuire, that was specifically listed as a "Pediatric Epileptologist", and not a Pediatric Neurologist. I would contact someone there regarding that.

I also think you are a long way from being dismissed from the surgery option. There are soooooo many other tests that they have not even spoken with you about. They are listed on that LSU website. One MRI does not rule everything out, especially if it wasn't that one MRI I mentioned that Katie had done. A"spli" MRI, or something like that. It is much more detailed and measures different things within the brain. What about the MRI said "no" to surgery? Any specific info she gave?

I'm not saying Bonnie's situation will end up in a surgery diagnosis, but there is much more work to be done yet. I would also question the EEG findings. Did it show "all over" brain activity, right away, or after the seizure started? Did it show where her seizures were ACTUALLY starting from?

From what you described, about Bonnie's seizures, they seem to start on the right side (because the eyes and head go left...where Katie's eyes and head went right and the seizure focus was on the left side). I'm not a doctor obviously, but going by what I have learned and the similarities to Katie's seizures. If Bonnie's are classified as "Complex Partial".

Then you can read online, what is located in the right hemisphere of the brain and see where/what the seizures are affecting. ie: mood, emotion, etc. Maybe that is why they feel they can't do surgery, it could affect that area. You need to ask LOTS of questions yet. Maybe that would explain Bonnie's moodiness as well, if the seizures are originating in the right frontal lobe? Hmmmmmm...just a thought.

Contact the Epilepsy Foundation nationally, they can still connect you to the "nearest" place to receive info from.

Have a safe 4th of July and talk to you soon!

Vicki

Hi Vicky
I'm so glad to hear Katie is still doing so well. I have been a little worried since you haven't been on in a while.

They have never really given me any detailed explanation about the EEG. We just had a normal MRI done. They did mention something about doing one with dye, but they did not do it.

When I asked about the Vens?( the thing they put under your skin in the neck area to help control seizures, not sure the name) they said it wouldn't work for her. Couldn't do the diet because she wouldn't stick to it. They said she couldn't have surgery because the MRI didn't show anything.

After the Neuro in N.O. saw the VEEG she seemed to be thinking surgery, we immediatly had the MRI and then she said she couldn't have surgery because it didn't show where it was coming from.

I do think maybe it is the frontal lobe. Her first diagnosis was focal partial seizures then it changed to complex partial w/secondary generalization. I am going to ask a lot more questions next week!
She has had a headache in one spot on the left side a few times.

If you could list some questions I need to ask, "all over" brain activity, right away, or after the seizure started? where ACTUALLY starting from?
I would really appreciate it.

Thanks again for your help.

Debbie

Hi Debbie,

I have to get to bed, but popped on for a few minutes. I'll look through my book of stuff for Katie and give you some ideas of the ?'s we asked our Epi.

Andrew has football stuff in the morning, hopefully I can get it posted for you sometime in the afternoon. I know you have the appt. soon, July 9th?

Remember...Don't give up! :)

Vicki

HI DEBBIE! :wave:

I have a bunch of stuff that I will post in the am tomorrow. I have some books for you to check out and questions for your office visit. Some of the questions may not be able to be answered by your Neuro, they may need to be looked at by the specialist. I have a call into our Epi too, but she is on vacation this week! UHG! So I won't have any info for you there, unless one of the NP can answer or Dr. Schwabe (the one who did his fellow at Univ. of Texas-Houston). Chances are Dr. S is VERY busy with Dr. Z being gone.

I will post tomorrow, I PROMISE! Unless the computer crashes...I shouldn't have said that! ;)

Talk to you soon!

Hope Bonnie's been doing ok...let me know!

Vicki

HI EVERYONE!

I hope you all had a safe, enjoyable and very patriotic holiday!

We are at week 4 post surgery and Katie is continuing to do well! Her hair is coming in more quickly this time, compared to the lsat surgery and every day she is seizure free is incredible! I am not taking it for granted one bit.

I have a question for you guys...Katie has been having trouble sleeping over the last 2 weeks. We tried to wean off of the Melatonin at that point.

IS IT POSSIBLE, THAT WITH THE LACK OF SEIZURE ACTIVITY, SHE JUST HAS MORE ENERGY AND THAT IS WHY SHE IS HAVING A LITTLE MORE TROUBLE GETTING TO SLEEP? Since her brain is not in a constant state of firing, and not having auras or complex partials, that is all I can think of. We have cut back to no sugar after 4 pm., limit sleep to no more than 9 hours, and waking before 9 am. Poor kid, it's summer vacation! We're trying different things.

Any input would be appreciated! Phoebe, are you out there? I haven't heard from you in awhile. What are your thoughts on this?

Also, Katie DEFINATELY is more alert and has more energy since the cessation of her seizure activity...even with still being on the Keppra and Lamictal.

Epi/Neurosurgeon appt. set for July 21.

Thanks guys...you mean alot to us! ;)

Vicki

:p Hi Vickie! It's me, Lindsey. Remember me? I haven't checked this board since I last responded to your post about Katie regarding my experience with brain surgery for seizures (back in May, I think). Anyway,
I suddenly thought of Katie and I am so glad I stopped by to hear how well Katie is doing and how wonderful her surgery went!!! Fantastic news. Her surgery went similiar to mine but I can relate some to the energy thing. I remember that I didn't experience a lot of trouble sleeping afterward. However, during the day there was a DRASTIC change in my energy levels (once I was recovered. Maybe 2 weeks post op). I had to constantly be doing something. Anything. Constantly up and about in the house ( I couldn't drive yet and I was almost 19 at the time) cleaning or closing doors or whatever. This is why I eventually started running every day. I had to release some of that energy, lol! :) Anyway, it might be that she has more energy and it could also be just changes in her body. Surgery like that takes a huge toll on the body. I didn't get a period for about 5 months following mine. I wouldn't really do anything for it. It will just take time for her body to adjust to whatever is causing it (more energy or just physiological changes). You could always use a sleep aid for a temporary fix but I remember it took some time is all. I do remember being absolutely freezing because I had no hair! :) They shaved my head completely.

I'll check by here again and see if I can help anymore. Glad she is doing so well. She sounded so brave (and so did her parents!) :)

Take Care!
Lindsey

Vickie- I wanted to comment on one more thing. Memory. After my surgery, they determined I didn't lose any memory. I recalled things minutes after awakening from surgery (a friend called me the night before my surgery and when I woke up from surgery the next day I told my mom about it. It was one of the first things I said to my mom and I remember the look of relief on her face knowing I had my memory. I can still see her face. :) ) Anyway, the only thing I lost in my surgery was 15% of my peripheral vision on the left side. Not even noticeable. That's all they could determine at the time. But, I don't know if it's just age (I just turned 33 a few weeks ago) or what but I think I did indeed lose some memory. Short term mostly. I think it just took 14 years to find out. It could be total coincidence too, I suppose, but in my heart, I don't think so. It doesn't cause me daily problems or quality of life issues. I was capable of graduating college (elem.ed) just fine, lol. I just know that sometimes I watch things on tv or read something and seconds later if I didn't pay VERY close attention, I'll forget it. Like reading the ticker at the bottom of news shows. I see something of interest and get ready to tell my husband and before I can start telling him, I've forgotten part of it. Little things like that. Nothing major but I think I did lose more memory than they originally thought. I don't mean to alarm you at all with this as everyone is different and every surgery is different. I thought my perspective 14+ years post op would give you some insigh on it. :)

Best wishes!

Lindsey :)

Hi Lindsey,

I just spent 35 minutes typing a response to you and lost it! UGH! Second time in 2 days. Before I post again, I want to make sure my computer will take this, if not, I'll wait until tomorrow to reply again...sorry.

And the red ANGRY face doesn't even begin to describe some of the words that flew minutes ago... URGH!

Vicki

Hi Lindsey,

I was TOOOOOOOOOOOO busy today to get on and re-write my novel to you, please check back tomorrow and I promise I'll have it for you...check in the later afternoon. Our son Andrew is applying for his first job, he's 14. So I've been helping him fill out the ap and coaching him on how to approach the manager, what to say, smile, eye contact, posture, politeness and how to ask if he can check on the status of his application.

Katie is a little jealous, because she can't do anything this summer. BUT I told her that she has a LIFETIME to deal with work. I would like to have Andrew get a part time job so Katie can have some peace and quiet. She's my "peace" child. Andrew is the OVER energetic one who needs challenges, or he can get bored. Both at opposite ends of the spectrum. Katie really wanted to get her CNA license this summer to work at Children's Hospital, but she can't lift over 10 pounds. So she couldn't lift or help with a patient. She's bummed.

Anyway, I have had a full day of baseball, board game cheating, mowing the lawn, trying to help start the push mower, and chasing squirrels off the dog gone bird feeder. They just don't get that they aren't wanted!!! I went through a bunch of golf balls today and only came close to one squirrel's beeehind! :D

Talk to you tomorrow! Thanks a bunch again for checking in with us!

Find any stray golf balls, they're probably mine! :D

Vicki

Hi! You did have a busy day! Best of luck to your son in his job hunting. :)
I almost lost that HUGE post I posted for you back before Katie's surgery because it was too long. Forunately, I cut and pasted it to my email and then re-cut and pasted on here. I've had that happen before so I feel your pain and anger! I don't blame you at all, lol!

I'll check back a little later. Just remember not to make it too long or post in two seperate posts or else you might lose it again. :)

Have a good day. I need to take my kids outside to play.

Lindsey

Hi Lindsey!

Man this better not get lost! I think it was our DSL that caused the novel to disappear. When I clicked to post, the "cannot find server" page came up. And I was sunk at that point. From now on if I have a long post I'll paste to a word program, so I don't lose it. That way I can post whenever. I kept hoping the "refresh" button would work, not a chance.

So, here it goes: I had just spoken with our Epi's nurse practitioner re Katie's energy level and trouble falling asleep. She said it could be a few different issues. It could be post surgery physiological changes, lack of seizure activity (not making her tired all day), meds may be affecting her differently now that she isn't having any seizure activtity or the meds are just too high for what the need is now. But she doesn't want to do anything until our Epi comes back and fills her in. We have an appt. on July 21 with the Epi and the neurosurgeon. I'm sure I'll hear something next week though.

They did check Katie's peripheral vision daily, along with a neuro exam daily. Katie's peripheral is fine so far, but who knows until an eye exam is done for sure. She doesn't notice any changes at all. I worked for an optometrist for a short time and even the 15% loss you mentioned is not that significant. Mant people drive with poor peripheral vision. Just need to turn your head more often.

As far as Katie's memory...we were most concerned with that because of the fact that she had tested with having "bilateral" memory centers. She had memory in both hemispheres. She had to have the WADA test to see which side had the strongest memory and the right side was stronger by ONE more object Katie was able to remember, which was not a significant enough difference. That worried us. We then thought that if the left memory area (where seizures were definately starting from) was removed, with surgery, that would leave Katie with a little more than 50% of her memory. UHG. But or Epi told us that if Katie kept seizuring, it would continue to damage that area and possibly cross over and start involving other areas. Or she could start to develop GMs as more of a norm because of the cross over to the right they had found, 10-20 seconds after her seizures would start. So no matter what, her memory would suffer. SO after ALOT of thought and one final visit with the Epi before surgery (5 days preop to be exact) we decided we needed to do it for Katie's QOL. We would have to cut any losses (if there were to be any) and make it up with therapy and/or school servicing. Meds weren't an option anymore, they just weren't working. We were already praying, but enlisted a TON more people.

Katie had her surgery...and after she was moved to the ICU and was more with it the afternoon of the surgery (between morphine injections) that was when we were able to tell what shape her memory was in. IT WAS FINE!!! She remembered where we were and what we all did the day before her surgery, what she had for dinner the night before surgery and most importantly what we talked about before they rolled her away to the OR! That was the sign! After the morphine was stopped (on the second day) she was doing even better. She had nurses that she had had previously (for the other surgery and the VEEG) come in to visit and she remembered all of their names, they were soooooo thrilled! Katie was doing really well. I was so thankful to God that He guided us toward the decision we made.

Since surgery, which is a little over 4 weeks now, Katie's memory is still strong. I also notice that she is quicker in her responses and not as hesitant with her speaking. Don't know if that is a coincidence or if it IS that she is sharper, with less seizure activity. This will be interesting as we move forward. She has been reading alot this summer, because she can't do much else and it seems that her comprehension is doing a little better. When school starts, we'll have to monitor that a little more. This is rec-reading, not the stuff that really "counts". :)

So, we are just thrilled with what we see now! We can only hope for more improvement, but I would have to say that she is definately at her pre-op level now. If nothing more comes as far as improvement, then this is just fine with us.

Thanks a bunch for checking in and taking the time to contact us and share your story! It made a huge difference to Katie hearing your story and Phoebe's. To know that someone that was almost the same age as her, had surgery for E, finished college, got married and has a wonderful family was her inspiration. Hearing Phoebe's story of having seizures for so long and finally having surgery at an older age (no offense Phoebe! ;) ) and the fact that she is experiencing life a whole new way, meant alot!

We hope Katie's story will help others here too. It is an amazing thing, absolutely amazing. Katie has been blessed, truly.

Take care and hopefully you can check in in a few months (they told us a minimum of 6 months before any big med changes) again so you can see if Katie's follow up EEG looks any different, if she will be going off of any meds...etc.

Enjot the rest of your summer and I can't say thanks enough! :angel:

Vicki

Hi Vickie!

I'm glad I could help some. I have to agree with the nurses ideas on what's causing her sleeplessness. I experienced all of that too. Perhaps if Katie took up exercising (running which I eventually turned into running 4 miles a day), it might help her sleep too. That's what I did. It turned into a way of life for me for a long time through college etc.(until I had kids! :) ) and I still exercise now but not nearly as often as I did right after surgery. It was a nice relief for me to get out. Made me feel good (and look good,lol!) and a constructive way to release the energy I had since I wasn't doped up on meds or having seizures. Just a thought for Katie....Eventually, in my opinion, she'll get used to the change of not having seizures or being out of it on meds and she won't notice the extra energy as much. And will sleep well once she's accustomed to the changes. It's nice that you have the summer to get her adjusted before school starts again.

I experienced the WADA also. Hated it. They numbed my groin area but it didn't work so I felt all of it. And, the xray machine that was directly on my head and caused tremendous pressure. Ouch. Ugh. Hate even thinking about that. And everything else. I'm not exactly sure where my memory was located. It's been so long. :) I am left side dominant and they operated on the right side. As I said before, I didn't notice any difference in my memory until well after surgery. Just in the last 4 years or so. Hopefully Katie won't experience any loss. Could be unrelated to the surgery but I don't think so.

I did the visual fields test at the Cleveland Clinic. Many times. I had to push the button when I saw the pinhead sized *** come out from either side. Still remember that. I don't notice the peripheral loss on the left side at all. Other than that and, in my opinion, memory loss I notice nothing different. Well, maybe all of the "holes" (dents from cutting the skull etc.) on my head but that's it, lol! :) Right around my hairline and on one side of my temple (right side). Not noticeable to most. Some dr's have suggested plastic surgery but I'm just fine with my battle scars. I have more on my head under my hair!

Katie's life will never be same again. By that, I mean she will forever be grateful for having the surgery. She will have so much more energy and enthusiasm in her life. I am so glad I had the surgery. It literally changed my life forever. Med and seizure free for 14+ years. I'll never have another seizure again (and I feel very confident saying that!). Wonderful feeling.

I do experience what I call head pains. Sharp shooting pains that last only a second or two on the side of surgery. Dr's told me it was where they cut on the brain and the brain doesn't heal. I can deal with that. I have them less and less as time goes on.

And, I will definitely check back here as often as I can to see how Katie is doing. Be prepared for huge changes (for the better) in school this year. Being a mom myself now, I know how wonderful it must make you feel to see Katie doing so well! Congrats! I can tell you are a very caring and wonderful mom.

Take care and best wishes for continued success.

~Lindsey

Hi there. I just got back in town from visiting the relatives and read some of the posts. There are many changes that Katie may experience after surgery as we mentioned before. These can occur slowly over a long period of time. What each person experiences is so very individual. After surgery, I was not on the very high doses of Tegretol, and I did feel that decrease! On one hand, my memory and thinking processes were much clearer over time, but I initially got very depressed. Difficulty falling asleep, early waking, becoming tearful, eating too much or too little, and being forgetful can all be symptoms of depression. I have heard many others experience depression after this surgery. I did start taking an antidepressant for a while, but it was only temporary. Do you think this could be a factor with Katie now? I think that talkiing to the other teen who had surgery would be great for her now to compare the after effects. Please suggest that she do that. I think it is great that she wants to get her CNA certificate. The restriction on lifting will not last, and if she wants, she could volunteer at a local hospital as a candy striper or other volunteer. Those aren't paid positions, but after she is able to do more and go ahead with the CNA work, she will already have a working relationship with the hospital. It is still good experience re learning about what is involved in healthcare before she invests anything. I was a candy striper at age 13 at my local hospital. More similarities! Hope this helps. Phoebe

Hi Phoebe,

I hope you had a nice visit with your relatives!

I don't think Katie is exhibiting any signs (at least not now) of depression. The only thing I could really pick at is that she really wants to golf and for now that's a no-no. We'll find out on July 21st if any restrictions are going to be lifted at all. She has started exercising though. Using the recumbant bike for now and riding 3 miles a day.

She is also going in on Tues. July 13th to finish the fMRI study she started last year. The MRI that they hope to develop in order to take over for the WADA test. She'll have a "free" MRI and do some computer work (neuropsych stuff) and get paid for that time plus a bonus for completing the study. She loves that stuff! We need to be at the medical college around noon. The neuropsych doc said they are very interested in Katie's outcome, post surgery. Hmmmmmmm.

Katie and Ashley have spoken a few times since Katie's surgery. They seem ok, but Ashley is definately different than Katie. She's talking about a boyfriend and a few other "worldly" things, a little more than Katie is interested in right now. And Ashley's dad is a pastor...interesting. Katie's not sure where this is going to go. I told her to talk to her a few more times and if it doesn't "feel" right, then she can let it go, if she wishes. Not everyone is each other's "cup of tea". Our Epi and her NPs even thought Katie and Ashley were "quite different" (that's all they said)...and they only said that to me though, not infront of Katie. So, we'll see.

I was a candy striper for 3 years also! Unfortunately they don't have that same type of program here anymore, we looked into it. Too much liability for the younger age. They take volunteers at the age of 16 now. Katie may go ahead and get the CNA license anyway. Can't hurt, may also look good on her college ap. It is a 6 week "weekend" course. From what I understand, it could be possible to get a recommendation from our Epi and from our friend who is a social worker/pyschotherapist at Children's. (a comment from one of the NPs). :) I didn't tell Katie, don't want to get her hopes up, just in case that doesn't fly. But many have said they would love to have Katie up in the EMU.

Katie has a lot going on with her body right now, as you understand. So we will wait for the Epi/Neurosurgeon visit and see what she/he has to say. We are looking forward to their smiles and I'm prepared to get a comment on my extreme comments regarding Katie's memory. Was I concerned? Absolutely! Will I apologize for it, absolutely not. I'm her parent and her advocate, first and foremost. Period. Was the Epi probably right? We are continuing to pray that it is so!

I wish you could see Katie, she is doing SUPER! Her hair is almost over her incisions, about another 1/4 inch and they'll be covered, for the most part. Katie has darker brown hair, so the white scalp lines are a little easier to see. But she has hats, bandanas, visors to keep her head fashionable. Hopefully by the time school starts she can get some type of styling done. What do you think of hair extensions? I talked to her about it, but we worry about tenderness with the incision areas. I told her we wouldn't do it until the week before school. The poor thing has 5 or 6 different lengths of hair on her head. Because of the prior surgery and having been shaved again. I am glad we didn't have her whole head shaved though. Katie is too. Just need to figure out what to do with it. What did you do? Ashley had her whole head shaved, after she got home. It looked bad I guess because she had past the shoulder length hair. Katie's was chin length and layered.

Katie does notice having more energy. She said she feels more "with it". Able to concentrate a little better. Any thoughts on that? She doesn't say, "mmmm" before speaking or during her sentence, as much either. Like her thoughts are more clear before coming out of her mouth. I haven't told her I notice that at all. I want to wait a bit.

It is very interesting watching this unfold. Things that I didn't even think would or could be different. School will be the tell all. That will really shed some light. But, we don't want that tooooo quickly. We really haven't even had a summer yet. It was 81 today. Our third 80+ degree day all summer. It has been rainy and in the 60's and 70's all summer. The only hot days we had were while Katie was in the hospital, in the beginning of June. Oh well. That'll probably mean 50 feet of snow this winter! Just kidding! We usually get 3-10 feet every winter. Depends on if we get any "lake" affect snow.

p.s. Mike and I would like to get Katie something special for her 16th birthday, in addition to another gift we are giving. Something to remember this time in her life, what she has gone though and where she is headed. Do you have any ideas? I may post a thread asking for ideas, but I wanted to ask you first.

Take care,
Vicki