Hi Debbie,

Well, I started typing you this long dissertation and I LOST IT!!! I spent almost 30 minutes on it. Now I have to start over. I think we have some problems with our computer and just don't know it. Also, our online service runs slow at the noon time...we have Road Runner DSL.

So here I go again, and I may have to split the posts...

Books to look into:

The Healing Nutrients Within: Facts Finding New Research on Amino Acids by
Braverman, Blum, Smayda

Women With Epilepsy: A Handbook Of Health and Treatment Issues by Martha Morrell

Excitotxins: The Taste that Kills by Russell Blaylock

Epilepsy: A New Approach by Adirenne Richard and Jeol Reiter

These are all very informative and cover info from vitamin therapy to biofeedback to conventional, to food therapy. I have all of them. Look on Half.com or Ebay first before you pay full retail.

Some questions we had for our Epi that I have tried to apply to Bonnie's situation:

What exact type of seizures does Bonnie have? Are they true Complex Partial?

Where do they start in the brain, according the EEG? Is there a clear starting point? Does the activity spread? How long before it spreads? Does Bonnie show multiple or multiple independent seizure foci? Any bilateral discharges? This is a key area to discuss. If Bonnie does have "all over" activity or multiple seizure foci (something like "refractory epilepsy") then surgery may not be an option. But you won't know until other test are done to TOTALLY rule this out. The SPECT scan I mention below would be a key one for Bonnie I think.

Is there a clear area of the brain for the activity? Is it showing Frontal Lobe E or Temporal Lobe E?

Is the Frontal Lobe area more apt to generalize than other areas?

Is it possible Bonnie's seizures start in the Frontal Lobe then spread to the Temporal Lobe creating a Complex Partial seizure? The prgresses to a generalized seizure? I read that many whose seizures start in the Frontal Lobe don't have auras before (no warning) and that they spread quickly from there, to a Complex Partial seizure.

Would subdural strip surgery benefit Bonnie? To see if a closer localization can be found?

Ask about sharp pain or headache in one spot that Bonnie has had. Rule everything out. Coinsidence or not.

Ask for a detailed high resolution 3D MRI that shows the depth and volume of the brain.

Ask about a PET scan. To check the uptake of glucose to the brain. You can see "slow" areas in the brain as the glucose is metabolized. It could point them in a direction.

Ask about a SPECT scan. Seizures are associated with increased glucose metabolism. If they are able to inject Bonnie within 20 seconds of the onset of Bonnie's seizure, they can tell where the epileptogenic area possibly is. However, they need to get the injection at the onset and not be late, or the scan may show the seizure spread, rather than the seizure onset area of the brain. Katie had a nurse sit by the side of her bed one day with the isotope mixed, and in a special can. The isotope only has a 6 or 7 hour life. So if the seizure doesn't happen, you need to start over the next day. Katie sat with the nurse for 4 hours before she finally had a seizure and was injected. It proved to be a VERY important test for Katie.

Ask about an MEG. (Magnetoencephalography) It is a type of imaging that gives much more detailed info than an EEG. Can localize the area better. There is less scalp/bone interferance with this test. Is is magnetic like the MRI.

Ask if there is an FMRI study available for Bonnie to do. They can't use the info for diagnostic purposes because it is a research test, but our Epi found some interesting things pertaining to Katie. She couldn't tell us exactly though. But we seemed to get the drift of her comment.

How mant more meds are you willing to try before looking at this further?

Would you consider yourself a conservative doctor or an aggressive doctor? Are you up on the new things that are helping children with E?

Those are some of the thoughts and similar questions we had. Of course, as we moved further along with things, more detailed questions came up.

Just because Bonnie's MRI didn't show anything, that doean't mean there isn't anything to investigate. Your doctor has to be willing to take things to the next level, to totally rule out everything, before saying "nothing" is an option.

When Katie had her subdural strip surgery in April, we went in to the situation knowing that if Katie had an independent seizure focus on the right side as well as the left (we alreay knew about) that surgery would not be an option any longer. But it turned out that the right seemed to only "come along" for the ride AFTER the left started the seizure.

Katie and I continue to pray daily for Bonnie and other kids/adults on the boards here. There is a definate reason we have all found one another here.

Good luck with the Neuro appt. and if you have questions, post and I'll get back to you. This took 45 minutes...I am a slooooooooooow typist.

Take care, ;)
Vicki

Hi Debbie, :wave:

Are you and Bonnie OK?

I hope you get this novel before your appointment tomorrow.

Please post to let us know if you're ok.......................

Vicki

Hi Vicky

Thanks so much for all the info.

I had written a note last night and then lost it! Then I had to leave and couldn't get back until today.

Yesterday I was writing to say I remember why I hated trileptal so much! Every since we started increasing the trileptal the behavior has started back. She has become defiant, mean, pouty, thinks she can do what she wants and will not listen at all, will scream, turn chairs over etc. She acts very immature for her age, almost like a drunk. I know some of it sounds like teenage years but its so magnified! And it is so unlike Bonnie. When the med was first increased she cried one night and said she was sorry for being mean that she didn't mean to, that she didn't want to take that med. Then as the med was increased again she didn't care if she was mean, she said she liked the med, that was just said to hurt. Thats one of the behavior items, she doesn't care if she hurts you. It gets so hard to remember she can't help this when she gets this way! The bad thing is that its controlling the seizures better, she just gets the feeling like she will have one but not have
it ( good that its controlling it but bad that it has such bad side effects). There is no way she can stay on this med!

Well today we saw the doc. I woke up late ,was sick this morning and so got to the appointment late! In all the rush I forgot my questions I had typed up from what you sent!

I found out that it was in the right frontal lobe, thats why the behavior issues. But really I think its more the meds causing most of that not the seizures. She said she has focal partial unless the consciousness is effected, such as remembering it. Then when she has the GM's.

She said that is why Dr Tardo said no surgery.

We are going to try lamictal starting tonight and then start taking her off of trileptal again! I asked what if the lamictal doesn't work. She said that maybe then look at if there was a chance for surgery, after several good drugs don't control it. I told her that if surgery was going to be the final outcome I didn't want to wait too long. She said she understood that. She said lamictal is good at controlling these type without the behavior and learning side effects.

We should know in the first few weeks if she will get the rash. We see her again in Sept.

I'm still going to contact N.O Hospital.

I don't want surgery if its more dangerous because of where it's at, but she can't stay like this and especially if only trileptal will control it. I'm hoping lamictal will work.

I'm so glad Katie is still doing so well.

Thanks again for all your help.

Debbie

Hi Debbie,

Just hold on to the questions for your next appt.

Boy, I just re-read my post...I had a bunch of typos. Hope you made everything out ok.

I would start some reading on the Frontal Lobe and surgery outcomes, online. There are some out there, I know I came across them when I read about Katie's surgery.

I'm not familiar with Focal Partial seizures. Can they progress to Complex Partials? That is what can cause the loss of consciouness for Bonnie? They are known for that (CP seizures).

How many meds has Bonnie tried up until now? NOT including the Lamictal, because you don't know yet if it works or not.

Are you going up by 25mg on the Lamictal? Or what does she have for you? What is the final dose she wants Bonnie at? Is this the only med she'll be on then? Lamictal can cause insomnia in some people...don't tell Bonnie! You don't want her to get that in her head, same with Katie. We never told her.

Katie went up by 25mg weekly (both am and pm), Lamictal. She is on 200mg in the am and 200mg in the pm. She also takes 3000mg total of Keppra per day.

I never asked, but is Bonnie your only child at home now? How is your husband handling Bonnie's behavior? Is he ok?

Am I at 50 questions yet? Sorry, I'll stop. I truly want the best for Bonnie and you as a family. It makes me sad to see what you are going through. As a parent, I relate to the frustration. I felt like I was at the pharmacy every week getting something new, needing more because of an increase, needing the old one back to add to the new one again...etc., etc., etc. There was one year there that we spent so much on meds it was ridiculous. Not to mention the unused meds that I had to figure out how to dispose of.

Take care and drop a line when you can...I hope you're feeling better. Prayers as always :angel: ......and a BIG (((HUG))) for you!

Vicki

Hi Vicky

I've found a little on frontal lobe epilepsy but not really any on the surgery so far, I am still looking.

Focal partials can progress to complex and then to GM's. She has had the complex. Apparantly the only difference is if her conscious state is altered, not that she has to pass out. It's pretty tough to know in how many this happens. She remembers most of the time whats going on, yet she can't tell me always how many she has or she tells me earlier in the day and then forgets later how many she had. I think I read somewhere focal partial is another name for simple partial, that it starts in one spot.

She has been on carbatrol, trileptal, keppra and now lamictal. The doc asked about carbatrol yesterday. I told her we had been on it for years and then it stopped working. I think she feels maybe try it again. She said we might even use it combined with lamictal, even though lamictal is a mono therapy drug.

Bonnie is to take 25mg once a day for 2 weeks then 25 twice a day for 2 weeks, then 25/50 2 weeks, then 50/50. During this time we are decreasing the trileptal again and will be off by the 50/50 point. At this point it will be time for her next visit. She said normal dose could be 100/100. After the first few weeks, if Bonnie doesn't get the rash, then you can increase at a faster pace.
Just what we need insomnia LOL! It's a fight to get her to bed now, yet she will sleep all day. She just wants to get on the computer and says no one is on during the day.

Bonnie is my third child. I have another daughter who is 22 and a son who will be 19 next week. They are both at home right now. My son should start college in the fall, he thinks he is going to get a job and stay in a house with some friends. I have tried my best to discourage this. He struggles in school, ADD, and I'm afraid it will be too hard. Afraid he wont ask for help till its too late.

My husband doesn't handle Bonnie's behavior well at all, they fight a lot. He was in an accident 2 years ago and is disabled. He also had open heart surgery 5 years ago and is a diabetic. He had back surgery last year and maybe will need another (Although it's worse since the surgery). Guess what med they have him on for pain? Good old epilepsy med and some pain pills! They have him on a lot now and unfortunately it keeps him pretty drowsey. I've told him he needs to talk to his doc about this. Him and Bonnie don't fight as much now, probably because they have increased his meds so much.

I often think what a waste it is to have this med that she can't use anymore. There is someone who could use it.

Thanks again for the help. I tried to find the books at the local Books a Million but they didn't have any. I'm going to go online now for them.

Katie stays in our prayers always. Thanks again.

Debbie