Removing Part of Brain to Help with Seizure Disorder

please, before you do anything, get involved with a local epilepsy group. you need to check into the doctor, and speak with other parents.
go to epilepsytalk.com , and go on yahoo groups to discuss with other parents. also, cure.org
I have a great one in orange county, ca. and we have enough people with enough variety of seizures so we know the rep of different drs, hospitals, and procedures. My son has idiopathic epilepsy- eeg patterns are epileptic spasms, seizures, and lennox gastaut syndrome. We've been through it, I know how that goes.
Calling out for help is the best thing you can do. Try and find other peoples experiences.

God bless you and your baby!

one more thing- UCP is a fabulous resource in our area!! something like 64% of their clients deal with other issues besides only cerebral palsy. In OC, the director of programming is so on the ball. Her son is 22, and has seizures, so they know whats up. They are a HUGE resource. ucp-oc.org

hi,

before you do any surgery I suggest you log onto NAET.com and see an allergist who can eliminate your child's allergies. Allergies are 90% or more the cause of physical and mental problems. Once allergies are clear, health problems cease.

Also, you may want to read the book Say Goodbye to Illness by Dr. Devi Nambudripad, the creator of NAET.

Be well.

N.

Hi K.,
I do not have experience with this surgery, but I would want to explore every other possible option 1st if it was my son! I have compassion for how scary it must be to have no drug working and be facing such a big decision.

One area you may benefit from exploring further: Do you know that there is strong evidence to suggest that the brain can suffer serious inflammatory changes from food intolerances, especially gluten proteins in grains?

It is proven that this can cause seizures. I can look at my notes and forward you a reference to some research data, if you like, about seizures, gluten and brain changes.
I have found there is limited understanding and integration of this in most medical environments. In general the misunderstanding is believing that the inflammation must always show in the digestive tract, when often it does not.

I have found the most accurate test for gluten intolerance/ sensitivity is a stool test from www.enterolab.com. I would do the one that includes everything, genetic markers, casein, etc. There is no discount to professionals, so if you want to, you can order/do and return the test yourself.

I can work with you on interpretation/lifestyle solutions/other types of lab work, etc. or happily refer you to one of my favorite teachers, a genius when it comes to complex conditions. Feel free to contact me anytime, by phone or email and I will give you more info. I wish you and your son the best!
C. Pole, L.Ac ###-###-#### ____@____.com

HI K.,
First of all, I am sorry that you have been going through this with your son. I have seen my brother and his family go through this with their now 7 year old son. He has had seizures since he was 6 months old. They have found a solution for them that has worked so far for 2 years. I emailed my sister-in-law to get advice for you. I am sure if you have more questions for her, you could email me and I would ask if it was okay that you email her.

These were her thoughts:

Functional Hemispherectomy - This is used for many epileptic kids as a last resort when all meds and med combinations have failed. It is extreme but often times it is used because through MRIs & CAT scans, the neurologists can see the exact portion(s) of the brain in which the seizure activity is beginning. If they can remove it or separate the hemispheres so that the messages don't jump across the synapses and involve the entire brain, they sometimes see some seizure relief for the child. This can be a positive thing considering that the seizures can damage the brain and most likely already have if they are to this drastic of a procedure. My best guess is that the child has many many seizures a day and cannot function in life as he/she is existing now.

The good news - Often these families have not been introduced to the idea of the Ketogenic Diet. It may not work for them even if they try it. However, I think every family with an epileptic child should do this before they choose the Functional Hemispherectomy route. Drug companies don't push the diet and therefore, often times neither do neurologists. Their local children's hospital might not even have a keto dietitian but it can still be managed through a children's hospital in the next state or somewhere close if they can travel. Even a child that can't eat through their mouth and is only G-Tube fed can be on a Ketogenic Diet.

That would be my question for her first - Have they tried the Ketogenic Diet? If they have, the Functional Hemispherectomy is probably their next option if all meds have failed as well.

you might want to ask your doctor about the VNS. you have to see if he is a good candidate. i have heard good things about it. good luck

T.

Before you had any type of surgery done I would consult with Dro. Greg Cantu. He works alot with nuerofeedback. His work is awesome. He has worked with my daughter with adhd and using amino acids as medication. Huge changes.
He is a great person.

His number is: ###-###-####. He is in DelMar on Pointe DelMar Way. Give him a call.

N. Brandt

First of all, I am so sorry that your family is having to go through this. I have a history of epilepsy, but was fortunate that somehow during my first pregnancy, it went away (hormonal reasons combined with prayer). So, I know what it is like to suffer from seizures when medicine isn't working. I had a friend in elementary school who started having horrible uncontrollable seizures. She went to so many doctors. Finally, when she was 13, they removed half of her brain. She only had a few tremors (like her cheek or hand moving) after that. She did have to relearn how to do a lot of things after the surgery since they had to remove half. Her quality of life was better after though. She had a normal high school experience, learned to drive a car, and went to college. It is a scary procedure, but in her case, it turned out well. Her family went through a lot of second opinions before deciding to have the surgery also. Good luck with your decision and I hope whatever happens, that your son gets much better!

Please get a second opinion and consider holistic medicine before you do surgery. From my experience with neurologist, I find that sometimes they are closed-minded and set in their ways. I have MS and have been treating it holistically with the help of my husband(acupuncturist). Every time I see a neurologist(I've gone through many), they tell me to get on drugs and then in the same breath, they say they can't tell I have MS. Hmm.

My prayers are with you. I can't imagine having to make such a decision.

N.

Hi K.,

I'm so sorry to hear about your son. This is a very scary decision to face. Your neurologist may be right about the surgery however as that is such a serious and possibly life altering step, I would be sure I had a second, third and fourth opinion. I think what Carolyn P. suggested about the gluten test and various allergy testing should also be explored. I would try everything I could FIRST before going with the surgery. It may work for some kids but may not work out that well for your son so be sure that is your best alternative before you proceed. Good luck!

~R.

We studied this in school, but aside from that, the only experience I have with neurology is having too many doctors in the family. ;)

The one thing, growing up & going to school, is this:

No one is more prone to get second, third, and even fourth opinions then doctors themselves. ANYTHING that makes you nervous should require one. And furthermore all GOOD doctors know this. The best doctors not only know this, but refer you to the best department in the field (mayo/johnshopkins/etc), and give you a shortlist of doctors to consult.

What I DO know about hemispherectomies is that they have far fewer side effects then lobotomies. There's obviously many different KINDS of hemispherectomies, ranging from "merely" severing the connections between the hemispheres to removing pieces, etc. One of the big upsides about doing any kind of brain surgery young (as I'm sure you've probably been told), is that the brain in children even more then adults, is still "growing". Ahem, it's actually losing gazillions of unused cells/pathways, but by the time we're adults that loss has stopped. Hence, why "growing" makes more sense. So it's easier for children to form new pathways because they've got extra room.

This is a huge step. And obviously one you're not taking lightly. Any brain surgery comes with risks...but then, so do severe seizure disorders.

You have my thoughts and prayers with all 3 of you. And very very big hugs. Get those opinions, and do some research, and speak with some developmental psychologists as well if you can (that's the neurology side of psych, they study the physical brain and how it relates to personality/behavior/etc. They can be an absolute treasure trove of information.)

Best of luck.

Wow what a decision. This sounds cliche but I saw it on Oprah! The did a show within the last 3 weeks where the guest had a brain surgery to lose weight. In the procedure they implanted electrodes in her brain that were controlled by a pacemaker type device. They talked on the show about how this device was also being successfully used in epileptics and people with parkinsins. The theory is that the device senses an impending seizure and sends an electric signal to head it off. Obviously I'm no doctor but I would find out who is doing this procedure and find out if this might be a better option or at least a less invasive one. If you could get good results without having to remove brain tissue it might be a better option. Good luck to your family and follow your heart!

Please get a second opinion. My Dad was supposed to have a major operation and chose not to thank God he is doing great with out it. They did a different type of treatment that worked for him. Let us know how he is doing. I hope he gets completely better.
Sue

Hi K.,

I second the other mom who urged you to check in with a homeopath. Julie Mann is good, so is Deborah Vidal (lahomeopathy.com). They are good friends and both excellent homeopaths.

Brain segment removal is irreversible...but the history of homeopathy shows that seizures are not!

Best of luck,

S. I., L.Ac.
Lotus Wellspring Healthcare
456 E. Mission Road, Suite 100
San Marcos, CA 92069
###-###-####
____@____.com
www.lotuswellspring.com

I am sorry to hear about your son's disorder. A very good friend of mine has a daugter that was diagnosed with a form of epilepsy about 18 months ago. After much treatment and frustration (not to mention awful side effects of the drugs) my friend turned to alternative treatment. Her daughter went from having up to 200 seizures a day (while on prescribed meds) to going 100 days without any. Perhaps this could give you something to look into. Her neurologist even suggested it after failed treatments. Hang in there.

please get a hold of Julie Mann first, if my mind does not deceive me - she had child with seizures and was able to overturn it with homeopathy:
Julie Mann RSHom (NA), CCH
2454 Louella Ave.
Venice, CA 90291
if she is too busy to take the case, look for other CCH person from this directory:
http://www.homeopathywest.org/membership.htmlGoGood Luck
V.

personally, i think neurologists area little off. removing part of the brain? yeah, I have heard that it works, but, I wouldn't want to make that decision for my kid! Yikes! can you meet w/ a neurosurgeon? I don't know where you are-But, Michael Muhonen at CHOC sees lots of kids w/ epilepsy. he may have some advice. Good luck.

I knew a young boy who had the procedure done when he was around four years old. His seizure's had become so severe that his chance at a normal life was no longer possible. Now, sixteen years later he is a completely normal young man!!! I believe that when these procedures are done on the very young their brains adapt and develop new pathways to learning. I believe the procedure was done either at UCLA or Cedars. If you trust this doctor and he has a stellar reputation and you've consulted with other specialists who are in agreement that surgery is best, then I really think that your beautiful boy will benefit from the procedure. Seizure's themselves can be damaging, so this may be, although scary to think about, the best option with lasting results. You sound like a great mom and whatever you decide it will be the right decision. You and your family are in my prayers.

Prior to going to the extreme of this surgery -there have been numerous children in our nonprofit Cherab who have reported, together with their doctor's observation, complete elimination of seizures by adding certain nutrients (probably with a focus on essential amino acids) to the diet. There are studies that today back this theory up through something called the Proteome project. The following is just one example from a parent named Alyssa who's 9 year old son Matt was scheduled to have part of his brain removed prior to starting a nutritional protein that has had tremendous results in our group but is still relatively unknown :

"NV What a surprise! I was told about it back in January and of course I was thinking it was like a million other products out there that parents with special needs children try. However, being skeptical I did order it and started Matthew (9yrs) on it once a day (2 scoops). Shortly after he started it I noticed very slight differences. He seemed to have a healthy look or glow to him; his temper seemed to have leveled off instead of extreme highs and lows. Matthew seemed to be grasping or understanding language a bit more too. The most drastic of all the changes is that as of today Matthew remains seizure free!! Matthew has been having uncontrolled seizures for three years now despite whatever medications we have tried. He has gone through many types of testing procedures and we were on the road to have a surgery consult to remove the portion of his right temporal lobe where his seizures were occurring. Today Matthew is drinking NV twice a day (4 scoops) and is seizure free going on 15 weeks! We have dropped his seizure medications twice now and still remain seizure free. I remain optimistic that when we hit the six months marker Matt’s neurologist will help us to slowly remove all seizure medications. I am in awe of NV and what it has done for our family. Alyssa"

You can read more about some theories why this is "working" at http://pursuitofresearch.org/science.html and I would be happy to put any parents or professionals in touch with any of the parents or professionals here including Alyssa http://pursuitofresearch.org/testimonials.html There is info at this site for your child's doctor as well as answers to basic questions. Please contact me with any further questions at ____@____.com I would be happy to help!

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L. Geng
President CHERAB Foundation
Communication Help, Education, Research, Apraxia Base
http://www.cherab.org http://www.pursuitofresearch.org
http://www.apraxia.org http://twitter.com/TheLateTalker
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"Help give our cherubs a smile and a voice"