EPILEPTOLOGIST! Please help find a board member from over a year ago, she was a regu

[tkdmom96]

Hello,

Well, I may be a newbie, but our daughter has had epilepsy since she was 9 months old and is now 15 1/2 years old. She has Partial Complex & Simple Partial (which we term "auras"), is intractible and has been on various monotherapies and adjunct therapies. She is currently on Keppra and Lamictal.

I am looking for a woman, who is a nurse and also has epilepsy. She posted often on the boards over the last year or more. I can't remember her name, but she was very knowlegable! She drove a long distance to her EP doc and I think it was in Georgia. She may also have been from Georgia. She was recommending certain people find an EPILEPTOLOGIST, a neurologist with a fellowship in Epilepsy.

After much frustration over the last 3 years I came to these boards just to read and collect info. We needed to become more aggressive. I came across this woman's posts to certain people and headed off onto the internet to research EPILEPTOLOGISTS. We had none in our area. My husband and I decided it was time to make a move. I came across Johns Hopkins and The Cleveland Clinic in Ohio, over the internet. Katie and I planned to head off to JH when the school year was done (May 2003). Then an amazing thing happened! A friend of ours works at Children's Hospital of WI. God was working here...She told us of a new doc that was starting a Comprehensive EP Clinic at our Children's Hospital! She was coming from New York Presbyterian, Dr. Mary Zupanc (you can find her on the internet)...and there our story REALLY begins...after 15 years...

We got in to see her almost immediately, because of Katie's case. And there our journey began to find out if Katie would be/could be a surgical candidate. The summer of 2003 was spent in and out of scanners (PET & SPECT & MRI), the EP monitoring unit (one week off meds and seizures induced through sleep deprivation and exercise bike riding>of which my husband and I needed to be in the hospital with our daughter 24/7. We split the shifts. I was 8am-8pm and he was 8pm-8am, I got the tough end trying to keep Katie awake all day...I thought that was tough, but he witnessed Katie's first Grand Mal...and that was WAY tough...in the middle of the night, in her sleep), a neuro psych exam, WADA test and now we move on to subdural electrode placement on April 5th. This is the last of the tests that Katie needs to have done to make sure her PC seizures are only on the left side of her brain. If it comes back positive, we move on to a frontal lobectomy in June. Her seizures are originating in the left hippocampus and spread to the right and she shows signs of Mesial Temporal Schlerosis (from the MRI). The subdural strips WILL confirm that there is NO right side independent activity...that is our hope.

I am looking to find this wonderful woman who set me on my journey/quest to find help for our daughter with intractible EP. If it weren't for her comment to someone else that I had read, who knows how far behind we still might be. You see, even after seeing a neurologist in the SAME hospital, we didn't know of Dr. Zupanc. The neuro we had been seeing (for 13 years) never told us about her or recommended surgery. We don't know if it was because of vanity or what. We have now obviously made the switch and we have run in to our old doc a couple of times in clinic. We just smile and move on.

I want to thank her for that possible life changing post. If anyone knows who I am talking about, please lead her to my post, or me to her. I am eternally grateful...it hasn't been a cheap proposition by any means, but we owed it to our daughter to exhaust all options. We are small business owners, with a not so great insurance plan, but we are positive and we know that God has lead us to this Dr. for a reason...please wish us/Katie luck and keep us/Katie in your prayers on April 5, 2004...this is the make it or break it test...it takes great faith to put your child in a neurosurgeon's hands, especially for a surgery that is considered an "elective" surgery...

AND PLEASE REMEMEBER, YOUR POSTS HERE DO MATTER, TO MANY PEOPLE...we know this first hand...

My profound thanks~~~
tkdmom96
mom of Katie, the most courageous young lady I know

[Lisa T]

I'm so glad you have decided to share your story with us!

Welcome!

I have been on this board for awhile now and the people around here are so helpful and supportive. When you asked about Epileptologist it reminded me of a post, so I went back and checked. I don't know if it is the post you are talking about, but Tattoo was educating some of us about them. And she mentioned the cleveland clinic. Does her name sound familiar?? I haven't seen any posts from her in a long time! I don't know if she is still around or not? I forgot to write down the post name to but it was around page 53 or later in the archieves... hope that helps!!!

Good luck to you and your family!!
Lisa

[LisaGuthrie]

Hi tkdmom96,

Thank you for such a wonderful story of hope... Many of us here have children on a similar Journey as your Katie.

I have 2 children with E. Jenny 15 - diagnosed conclusively Sept. 03 - prior to Sept we were treating for ADHD and Jacob (Jake) 2 started seizing at 10 mths. There was no question with Jake - his are rockem' sockem' Grand Mals...

Surgery did come up in conversation regarding Jake some months ago. Until the middle of Sept 03, our stories sounded much the same... He is now 136 days seizure free on Trileptol and Lamictol and Jenny is now 130 days seizure free on Tegratol. She started Tegratol the same night that Jake took his last dose... and I'm thinking the whole time - this is a waist... it didn't work for Jake - what could he be thinking.

However, their pediatric neurologist is very good... in fact when Jake reached a point last March that he was so unresponsive to the standard drugs and his EEG showed marked deterioration he contacted a pediatric Epileptologist for us asking for help. This Dr was able to place Jake into a FDA drug study for Trileptol.

And the rest is history as they say... However, my Mother's heart says that it's just the beginning

I would love to know more details of your journey. Did/does Katie have delays or learning disorders. Jenny had a reading and language disorder that we were able to address and over come prior to our knowing she had E. Jake is considered Globally Delayed, and he receives PT, OT and Speech twice a week with great success. To see him now you would think he was a very quiet but normal little boy. He still has a very long road ahead of him, but his future looks much brighter today then it did 6 mths ago!

Thank you for your words of encouragement on posting. The people on this board have been great about giving a little guy a voice – allowing me to better understand and help my children.

Best of luck finding the poster you are looking for. Please feel welcome and come back often. Keep us posted on Katie the next few weeks.

You are both in my thoughts and prayers as you face this next big challenge.

Love and light,

Lisa and kids

[tkdmom96]

Hi LisaG and LisaT,

Thanks for the uplfting thoughts and prayers for Katie...first I have a quick question for searching the archives...I don't know how to get to where LisaT mentioned above. Page 53 of the archives. I went to archives and didn't know where to go from there. I searched through here and there and didn't find anything. It was Tattoo by the way...hopefully she can feel our happiness somehow!

About our Katie> My pregnancy and labor normal, Katie had many ear infections on and off from 4 mo. - 12 mo. Seemed every month it was the other ear. At 9 months went to Dr. for ear infection in the am. Had a fever that day as well. Got a scrip, went home. She ate little, gave her Tylenol and she went for a nap. Nap went longer than normal. I checked on her once or twice, she was asleep. The last time I checked I found her seizing in the crib. I freaked out and called the Dr. office. Seizure stopped while I was on the phone. They told me to bring her in. She had another after I hung up. I went 90 MPH on the interstate talking to her telling her it would be ok and that I would take care of her. Took 6-7 minutes for a normal 12-15 drive! But even that seemed like an eternity! Started seizing again when we got there, wouldn't stop. Had to give her valium, in a vein in the head to stop it. Had her on oxygen as well. All docs and nurses out of the ped dept. were with her. I have learned to be patient while waiting for a Dr. now. You never know why they are late!

Medical transport was called to pick us up and take us to Children's Hosp. of WI. We had a doc and nurse for the ride. Katie was in the hospital for 4 days, diagnosed with CPE. Left with Tegretol, the med she was on for 11 years before it stopped working. That was a long history with a med. Still had breakthroughs over that time, but it worked well. Made it to 2 years, seizure free, at age 5. Tried to take off meds over the summer, didn't work. Made it to week 7 of the wean and had a seizure. Back to square one.

Had many EEGs, Cat scans and MRIs. Showed some spike and no damage on CAT or MRIs. Age 13 all he** broke loose. HORMONES! The last 3 years have been terrible. Tegretol stopped working. Tried XR, Carbatrol, Depakote (severe hair loss & brittle and lost a lot of weight- 110 down to 90 pounds in 4 months), Neurontin, Keppra and now Lamictal. Also, combos of the above. I am missing another med...don't have my notebook by the computer. Katie has CPE, catamenial E and MTS. Summer of 2003's MRI showed a shrinking of the left hippocampus. Didn't supposedly show on 2002 MRI (with old doc). Also, old doc said we should put Katie on a low dose of birth control to help regulate periods and hormones>>>YIKES!!! We found out that the extra estrogen can cause more seizures! (from our new Epileptologist) Our old doc was a regular neurologist...glad we said NO, we'll wait it out a little longer!

Katie went through many of the tests for the surgery process. It was a huge comittment, but worth every penny. We needed to exhaust our options. Did discuss the VNS and Keto diet. These are last resorts if no surgery. Many indicators for surgery, however they saw something on the VEEG that showed on the right side. Don't know if independent activity or a quick cross over to the right from the left. That is why we need to do the subdural electrodes in both temporal lobes, to be sure. Katie was scheduled for a left frontal lobectomy on Dec. 15, 2003. It was cancelled when they re-reviewed (third review), the beginning of November for the surgery, and questioned the VEEG. They have been very careful, and we are thankful! It went to a review board again (17 docs, techs, surgeons, etc.) in order to be cancelled.

Katie's WADA test showed bilateral memory, stronger on the right, and language on the right, which is what we needed for her to be able to have the left frontal lobectomy. Because she started seizing young, her language and over half of her memory moved to the right. That was wonderful news until the right side was brought into the picture a couple of months ago. If she has activity on the right, she will not be able to have surgery at all. Because the left is already compromised with MTS. We are praying (with many of our family & friends) that the activity is LEFT only with a quick cross to the right. If that is it, Katie will have the left front. lobectomy. She understands that this first surgery is important and is really focussed. She has been amazingly positive! She keeps my husband and I uplifted...she believes God has lead us in this direction for a reason.

To prepare, Katie needs (and wants) to give her own blood for the surgery, so we need to do that. 2 units and an additional from my husband. I can't give because we shared in pregnancy. She needs preop stuff done and they require pre-surgical counseling, which she started last week. To prepare for the surgery and after. If it is not good news (WHICH IT WILL BE!!!) there will be a grieving process to go through, a let down. It is a serious thing to build up to, and then to be let down...(WHICH WE WON'T BE!!!) She will be out of school for 3 weeks for this first phase. One week for the surgery/collection of info in monitoring unit and 2 weeks for recovery. (infection control, staying at home) If lobectomy, that will be in June when school is out.

Katie's IQ came back solidly normal with the neuro psych exam, trouble with spatial items (explains lower grade in Geometry this year>low 80's-upper 70's, when she had a 92-94 in Algebra last year), trouble with recall and expressive language (recalling words to use in conversation and speaking infront of groups impromtu, along with using larger vocab in her writing-she is a little immature in her writing compared to other Freshman) and some comprehension issues. All have been able to be dealt with so far. However, it has been increasingly more noticable as she moves through the upper grades. A little more struggle. Has to do with the damage to the hippocampus (MTS), which deals with short term memory. Does affect her note taking at times.

All of our knowledge has come to us over the last 8 months, when she has had E for 15 years! It has been truly mind stuffing! Just a year ago we had no idea what the cause was and thought we would never know. I beat myself up for years over what I may have done wrong during my pregnancy, if Katie hit her head, not getting to her quicker when she was napping (with her seizure that day), not bringing her temp down lower before her nap that day, you name it. Our new doc said it would have shown sooner or later.

Sorry for the novel again, but I said that if Katie is able to touch the lives of others through her journey, I owe it to share. If it weren't for the post I read that was directed to someone else, Katie may not be where she is today. We prayed for God's guidance...when we needed an aggressive doc, we got one. Now it is totally in God's hands as we move forward. We pray for the knowledge and the steadiness of the hands of our neurosurgeon, Dr. Mueller, on April 5th. We should know within 5-7 days in the monitoring unit, if it is a go for the lobectomy.

PLEASE NEVER STOP READING, SEARCHING AND ASKING QUESTIONS, BECAUSE YOU NEVER KNOW WHERE THE NEXT LINE OR ANSWER WILL TAKE YOU...we are grateful and thankful...

Thank you for reading this way too looooooooooooooooooong post, I try to give the most detail I can...

tkdmom96 (Vicki)
mom of Katie, the most courageous young lady I know

tkdmom96= Katie is a First Degree Black Belt in Tae Kwon Do (working on 2nd degree, still) and her brother Andrew is a Black Belt (done)...so that is why I am tkdmom96...they started in 1996. I could also tell you what we learned about how piano has helped Katie's E. over the last 7 years (right and left hands working together) and how the TKD has helped with her physical (balance, focus, stress, right side body strength-because of seizures on left) strength and endurance. She did all of this, just because. NOT because of her E., she just showed an interest. And all have been instrumental in helping her with her E. Divine guidance? Hmmmmmmmm....

[Lisa T]

Took me awhile to figure this new board out, so there could be a faster way to do this... but this is how I came across it. At the bottom of the Epilepsy page you'll come across sorted by and underneath that is 'from the'.. in that box I had to put ' beginning' in that to get to page 53 or 54. I hope this helps, wish I would of thought to write down the name of the post

Happy hunting, let me know if I can be anymore help!!??

Lisa