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seizures, seizures, seizures.....but not big ones....

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Even with a lot of focal seizures, still.....David is doing better. We went to the surgeon yesterday for his second and final checkup to see how his wound from the abscess surgery is healing. The dr was so pleased with the wound. She said that it is doing wonderfully and I don't have to pack it any more with gauze. We are very happy about that, because it was very unpleasant for David and for me. I never thought I could do it....I have found that I can do a lot of things that I never thought I could do. For example, I'm still giving David an enoxaparin shot every morning and every night, and I'm able to do it without very much trouble. At first, I could barely, barely do it....anyway, we were glad to get that good report from the surgeon, especially since they thought he might have issues healing since he's immune compromised and also has done chemo. The surgeon also cleared David on her end for another BBBD treatment. We have an MRI and appt with our NO on 3/15 and then I'm assuming they will schedule another BBBD at the end of March. Something that we are dreading...but we know it needs to be done.....so much turmoil in my heart....

I am fearful of what the MRI on 3/15 will show. It's been a long time since David has had chemo. The last BBBD (the one that left him so messed up) was in December. Looking back, since David's recurrence in July, he's only had three real chemo treatments, not counting the clinical trial he did at NIH with Sutent---that did nothing for his tumor. It grew over 25% while he was on that clinical. So David's last dose of Temodar was April of 2011. We did Sutent in September and then intra arterial chemo in October, and November we did the first BBBD, and then in December, we did the second BBBD. I think we are lucky--blessed--that David's tumor hasn't overcome him, considering how little it's been treated since the recurrence. I am hoping and praying that the MRI isn't horrible...that it is stable from the last good report that we got in January.

One of the things that is scaring me is the increasing frequency of David's seizures. He's been having more of them. They are not tonic clonic ones..they are focal seizures but they still scare us. One night, David had TEN of them. His leg jerked, his eyes blinked, his mouth pulled to the side. He finally woke me up and I gave him a Lorazepam (per the neurologist on call) and he didn't have any more that night. We saw his seizure specialist and he doubled the Gabapentin. Two nights later, David had 5 more seizures. He also had two seizures one other night, and one seizure another time. They only lasted about 10 to 15 seconds. But what do they mean? Does it mean bigger ones are coming?

So yesterday on the way home from seeing the surgeon at OHSU, David had a small seizure in the car. I immediately pulled over and I managed to get a Lorazepam under David's tongue. It passed and I thought we would be okay. I got on the freeway and we went about 20 minutes and David was able to tell me that he felt another one coming on. It was a lot worse. I managed to get off the freeway in a town that I don't know very well....Wilsonville, about a third of the way between Portland and Salem. I called 911. What a nightmare...trying to keep David from hurting himself, trying to figure out how to tell the 911 dispatcher where I was, begging them to hurry and send help....David was doing the whole seizure thing...thrashing, mouth contorted, eyes blinking, terror in his face, trouble breathing....I HATE HATE HATE HATE SEIZURES SO SO SO SO MUCH!!!!!! I was so relieved when I saw the fire truck pull up and six men jumped out and took over. The seizure had mostly passed before they got there. Even though it was a strong one, it didn't last very long...only about 3 minutes...which still feels like an eternity. They talked to me, checked David out, I called OHSU, and the end result was that we went ahead and drove home on our own. I was very nervous though.

I've been trying to tough it out, but I think I have really been traumatized by those big seizures. I hate myself for not being able to get over it and not be such a nervous wreck, but I may need to go and talk to someone or do something to get help. Any time I hear a thump or any kind of rhythmic noise from David's room, I almost have a heart attack and I run as fast as I can to his room and I burst in like the house is on fire. It's always something like David shaking out a tee shirt or tapping his toothbrush on the sink....

Other than the seizures, David is doing better. He hasn't had as many headaches, and he's not as tired and shaky as he was. But when he has a seizure, that takes a lot out of him. He had just said that he was finally feeling better when we were at the surgeons...about an hour before the two seizures on the road.

When we saw the seizure dr., that dr told me that I was just like all the other parents that he sees...terrified by seizures. He said that I'd get used to them and that they just happen. I don't know...am I overreacting? Am I just a nutcase? I seriously don't know if I should not be so bothered by seizures. How can I not be terrified by them? The seizure doctor said that he didn't think a seizure would kill David. Then he goes into this big old talk about something called SUDEP..."sudden unexplained death in epilepsy". He scared us pretty bad. I went home and researched it and I don't think that David is a huge risk for it but I still don't like it....I HATE IT. It sure didn't help my anxiety level. This seizure doctor....we have to find a new one. He's not helping me or David very much.

Right now, David just doubled up on Gabapentin. He's taking 600 mgs, 300 2x a day. He takes 3,750 mg of keppra....1,875 2x a day. The seizure dr says we are walking a fine line....any more medicine, and David is going to be really sedated. He already sleeps until 2 pm some days. The dr says we may need to learn to live with the focal seizures. Well, maybe I could learn to do that if he could guarantee that David won't have any tonic clonic ones. And of course there's no guarantees whatsoever. I thought that maybe the extended release morphine might be making David more groggy, so we are trying to wean him off of that. Oh, by the way, I can't have any of the nasal or rectal anti seizure medicine because the seizure doctor says I could kill him by overdosing him....he won't die from the seizure but he could die from my medicating him. Maybe if David can get off the morphine and the Dilaudid....

So...we are on a holding pattern, waiting for March 15th to see what's going on. Hopefully we won't have any more seizures...but I'm afraid that's not a very realistic expectation.

Is anyone else out there having multiple seizure issues, and how are you addressing them?

Love and blessings,
Cindy in Salem, Oregon

AshleyWF's picture
AshleyWF
Posts: 43
Joined: Aug 2011

Hi Cindy,

I have been reading all your posts. I just want you to know that I am thinking of you and David and praying for you always. <3

Ashley

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

Cindy,
I know that we are so fortunate that my husband has not had any seizures. The thought of them scares the hell out of me. When he was first diagnosed (DIPG) in Jan 2011, he was in FL and I was in HI. It took about 3 weeks for him to get in to see the NO at MD Anderson, and they made him take anti seizure drugs for the flight from FL to TX. The docs in FL scared us (well, at least me) about the risk of seizures. Finally the NO in TX said it was fine to stop the anti seizure meds. They were very, very surprised that since his whole pons was affected that he hasn't had any. It very well could be just a matter of time... But, I'm still scared to death. Every little thing about this cancer scares me. Every little thing.

I know I'm not much help, but I just wanted to reassure you that you are not crazy, not overreacting. I totally agree that maybe finding someone to talk to would help. I've been looking into local support groups, but they aren't especially close by and they are all in the evenings, so that doesn't work with our daughter (going on 3). I, too, feel like a huge stress ball, all the time.

Keeping you in my thoughts, too...

connsteele
Posts: 232
Joined: May 2011

I think David's neurologist is rather condescending and unfeeling. First of all, he discounts your feelings about David's seizures then goes on to say he could die from them? Where does he come off? Does he have any kids? Doesn't sound like it.

You are not over-reacting. Seizures are scary and he should not be brushing you off. I know it's stressful in changing doctors in mid-stream, but I think you should get another one...someone who understands what it's like to be a parent and see your kid going through these scary episodes.

Is there an epilepsy organization around that you could contact for a reference?

I feel for you and hope and pray that David's seizures under control.
Connie

cdolive4
Posts: 34
Joined: Sep 2011

First, Cindy, let me say that I'm glad you're keeping us posted. It's an intense journey, and our hearts are drawn out to one another as we try to negotiate all of the twists and turns on this roller coaster.
Second, I completely agree with Connie about finding another seizure doctor. My Dave has struggled with seizures through this entire year and it is exhausting. I literally never leave him alone, and sure enough, the few times I do for a few minutes (like when I'm sleeping), it seems like something happens. Dave is on 6000 mg of Keppra a day - higher than anyone I've ever heard of, and when we were in the hospital for this last surgery, everyone kept questioning the dose, thinking that surely we meant 3000 mg PER day, not twice a day. When we were out of state for our son's wedding last October, Dave had some major focal seizures which landed us in the ER several times. We finally ended up with a neurologist who was an epileptologist, and they are the one who bumped him up to 6000 mg a day from 4000, and took him off depakote, which had just been prescribed, and added Vimpat. His focal seizures have gotten much better, but every time he tries to come off the steroids, they start in again.
Several doctors have told me that with brain cancer, you absolutely want to avoid having the patient go into a full seizure - that it is not like other seizure disorders where you eventually get used to dealing with them, but something to avoid if at all possible. We've also had doctors tell us that we would just have to learn to live with them, but they weren't brain cancer specialists.
I don't know the specifics of David's medications, but I would push hard for a doctor who also thinks that seizures are a big deal. I know it's an ever changing journey in terms of balancing medications and quality of life, but you need someone who at least tries to understand what you're dealing with. I think that doctor was a condescending jerk, and that you should move on as quickly as possible. My Dave said that his full seizures have been terrifying experiences, and if I can help him avoid any terrifying experience along this journey, then I will do my very best to help him do that.
I do have to say, though, that there is a huge gap between the knowledge which exists and that which we are sometimes given as patients. For example, Dave's skin has suddenly become tissue thin, and he bleeds every time he bumps against something. When they draw blood or give him an IV, if they use gauze and regular tape to clot it, or if he's given a regular band aid, it just tears his skin and causes more bleeding when we remove the adhesive. We've begun carrying around non stick gauze pads, paper tape, and that stretchy ace bandage type self stick wrap so that everyone can use that instead. It helps a ton, but just today in the ER, they gave me a bunch of adhesive removal wipes and also tubes of liquid adhesive removal so that if regular tape or band aids get used, we can get them off easily. Who knew this stuff even existed, and why the heck isn't everyone using it? Surely any medical person who sees his black and blue and red bleeding arms could realize how fragile his skin is. I don't know if it's available over the counter, but its a good example of valuable information that makes our life easier. I think a lot of times the medical community assumes that we know what they know, but sometimes we have to extract the knowledge from them.
One last thought on David's seizures - they are terrifying, for him and for anyone who is trying to help him - especially you. There is not just the risk of death, but also of them causing more deficits. Nobody needs more challenges to deal with - we already have plenty. I hope you get some help, and please know that you are definitely in ou prayers. CindyO

BenLenBo's picture
BenLenBo
Posts: 138
Joined: Feb 2012

Hello Cindy,

I read your post yesterday on siezures, that is my fear with my son, he presently is living in his own home, and knock on wood, has been siezure free that we know of. Will beable tell more with next EEG in April. Benjamin is on 1000mg Keppra, his first medication right out of surgery was Fosphenytoin(used for only 5 days or less). Used to
stop surgery siezures.

I agree with others, you really do need to start over from scratch, with a different doctor who specializes in siezures and brain cancer together. Look for one who puts the patient and his family first, not his over inflated EGO! Interview the doctor's like you are hiring them for a position - be tough, hold your ground- this is your family. Make a list of what your desires are for this position:
1. Do they show compassion,care and concern. Do they look at you when talking!
2. Takes time to answer questions, ability to explain in layman's terms.
3. How many cases like your son's have they handled,and the results/satisfaction.
4. Easy to get a hold of during emergencies.
5. Treatment plan devised, only after fully reading medical history from day one.
6. Credentials

These are just an example- I have gotten tough over the years when bringing family members and friends in to medical facitlities. As in life some are great, others questionable. I lost a good friend last year about this time to cancer, she was to scared of her doctor to question her treatment plan. He treated her like a number, not the loving caring person she was.

Cindy, do you have many options in your area - and do the medical facilities work with outside facilities - like say John Hopkins- who is suppose to be the leader in Brain Cancer Studies? Doesn't hurt to look elsewhere. Have you had one doctor who monitors David from the begining?

God Bless and Take Care!

Carol

connsteele
Posts: 232
Joined: May 2011

BenLenBo: Thanks for posting the checklist for use in choosing a doctor. I have been having some rather minor misgivings about our son's NO (Dr. C): not so much his experience or expertise, but his approach to our son's treatment. All along, I think he has approached our son's treatment "with kid gloves". This comes in part from his initial diagnosis in Virginia, where we were told that his prognosis is very poor and some very serious blood counts to strong doses of Temodar.
So, I don't know if this "gentle approach" is his style with all patients or just our son's.
When we had to move our son home with us in Ohio and looking for a new NO here in Dayton, we read Dr. C's bio, which says one of his research focus is balancing the toxicity of treatment versus quality of life issues, and we liked that. Now that he has put our son on Avastin as a last resort (David's last MRI showed a doubling of tumor load despite treatment with other drugs) with average survival with Avastin alone at 6 months, I find that now I want to say NO! Let's fight this harder! But of course, I don't want the time he has left to be feeling sick either. What a place to be in! But that's the awful nature of this disease.

I am comforted by the fact that I can answer "yes" to each item on your checklist. Makes me feel that we have chosen the right doc for our particular situation.

Connie
m/o of David, age 34, dx 4-11-11 AA3,
2-20-12, progressed to AA4

connsteele
Posts: 232
Joined: May 2011

BenLenBo: Thanks for posting the checklist for use in choosing a doctor. I have been having some rather minor misgivings about our son's NO (Dr. C): not so much his experience or expertise, but his approach to our son's treatment. All along, I think he has approached our son's treatment "with kid gloves". This comes in part from his initial diagnosis in Virginia, where we were told that his prognosis is very poor and some very serious blood counts to strong doses of Temodar.
So, I don't know if this "gentle approach" is his style with all patients or just our son's.
When we had to move our son home with us in Ohio and looking for a new NO here in Dayton, we read Dr. C's bio, which says one of his research focus is balancing the toxicity of treatment versus quality of life issues, and we liked that. Now that he has put our son on Avastin as a last resort (David's last MRI showed a doubling of tumor load despite treatment with other drugs) with average survival with Avastin alone at 6 months, I find that now I want to say NO! Let's fight this harder! But of course, I don't want the time he has left to be feeling sick either. What a place to be in! But that's the awful nature of this disease.

I am comforted by the fact that I can answer "yes" to each item on your checklist. Makes me feel that we have chosen the right doc for our particular situation.

Connie
m/o of David, age 34, dx 4-11-11 AA3,
2-20-12, progressed to AA4

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

Dear Cindy,

I am marking this date in my calendar. I always dread MRI day for my sister. Hopefully your son's chemo kept the tumor at bay.

As far as your seizure doc, well I disagree with him: you don't have to get use to them; your son's seizure need to be controlled. Period.

I always read your posts, Your son is never far from my thoughts.

Julia

ChrisMFL97
Posts: 2
Joined: Mar 2012

Cindy,

I am a 15 year survivor of a golf ball sized grade 3 anaplastic oligodendroglioma in my right parietal lobe. I was on dilantin for the first ten years and had no seizures. My doctor retired and the new one recommended switching to Keppra due to the long term effects of dilantin use such as liver and bone density degradation. I have since had 8 focal events in the following 5 years. It is important to note that I have a very a very demanding job with lots of international travel, long days and a share of stress which can all contribute to lower thresholds for activity. I tried higher med levels but found myself exhausted and incapable of living life as I was accustomed to and expected.

I have recently switched back to dilantin in an effort to eliminate the seizures. My liver function and bone density show good tolerance, which enables the change. It is too early to see if the focal seizures have been effectively blocked, but I am quite optimistic based on previous experience. The wild card is whether an additional 5 years and some seizures has an impact.

I realize David's situation is quite different, but wanted to share if it could help in any way.

Regards,

Chris

BenLenBo's picture
BenLenBo
Posts: 138
Joined: Feb 2012

Hello Cindy,
I was just thinking about David. My Mom has this prayer on our
fridge, and says it daily:

God our Father: Walk though my house, and take away all my worries
and Illnesses; And Please watch over and heal my
family. In Jesus Name. Amen!

Praying for great results for you guys on the 15th.

Check this out: www.sportsmanslodge.com Here Fishy Fishy!

Benjamin

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

I had to go for labs Friday to be sure that the dose of Keppra they put me on after my two seizures in February was at the right dose. The nurse called me today and said they want me to increase the Keppra from 750 in the am and pm to 1000 in am and pm. She said my levels were still low, and NO wanted me to increase with my next dose this afternoon. Although everything still looked good on the CT and MRI, they cannot explain why I had a seizure. My last seizure was a month after surgery in November of 2009. I have been off of the Keppra for over a year, and out of the blue a seizure. I have been going to the gym for the past 5 months, and will continue to do so. It just worries me as to what is going on and why all of a sudden I had a seizure.

Do not think you are over-reacting by any means. My husband says that he is so scared to see me have another seizure. I did have a lot in November of 2009. I would have over 20 a day until they figured out they tapered me off the steroid to fast. Luckily I only had two in February, but he said that was two too many!

I hate that David is still having the seizures, and I pray for you guys daily. I too want to thank you for keeping everyone updated. I learn a lot from all of you on here, and I also feel I can tell how I really feel on here as well. I have a GREAT support group, but they worry enough without me adding to it.

Thoughts and Prayers heading your way, and I agree that you need a Dr. that you feel is supportive and not condescending.

Michelle
Mobile, AL

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you for your kind words and for caring about me and David. We had a sharp turn for the worse...I'm going to start a new thread with an update on our situation.

About why you may have had a seizure out of the blue....our doctor and several of the neurologists here at OHSU told us that seizures can be triggered by a host of things. Like being exposed to a cold or virus, or even stress or being overtired. They even told us to stay out of casinos (we never go anyway). They said that the lights and noise from all directions in a casino can trigger a seizure. A nurse told us that she used to work in Nevada and she saw lots and lots of people who had seizures while in a casino.

I wonder if you had been exposed to a flu virus or something in February that might have lowered your seizure threshold? In obeen ur area, there have been several nasty viruses going around and a lot of people have been really sick. David has avoided groups of people...a lot of good it did him....

The important thing is that you are remaining seizure free. I don't have any words of wisdom to help you not be afraid of seizures because personally, they scare me so much. But I don't want to let them dominate my life or David's life. Right now, that's not so easy for us...

Please continue to update and let us know how you are doing. I'm praying for all of God's sweetest blessings on your life.

Love and blessings,
Cindy

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

What you said about lights is very true. If there is a light flickering in a store, I have to turn away from it because it makes me feel bad! It has been like that since right before I was DX. My husband laughs when we go somewhere, and I say that light is going to cause me to have a seizure. It is even on some video games as warnings that the lights on the game may cause seizures.

I am about to read your update on David, but wanted to say Thanks to you for your encouragement.

Prayers heading your way!!

Michelle
Mobile, AL

ktlcs's picture
ktlcs
Posts: 360
Joined: Jan 2010

My husband had colon cancer not brain cancer. But.. 9 years before the cancer diagnosis he suffered a major stroke at a young age. Left him pretty messed up and he had many, many, many tonic/clonic seizures. We had a very good, very understanding neurologist who tried all of the the newer combinations of medications etc, nothing seemed to really work for long. He finally went back to the old method of dilantin and lorazepam and that did the trick! The seizures decreased dramatically! I am not a DR and do not know if there are similarities to David's condition, just trying to offer my own experience if it can at all be helpful.

And you know what, as sad as it sounds, you do get used to it after awhile. Of course I was always nervous but little by little it almost became sort of routine, seizure, lorazapam, some sleep and then back to normal.

I'm praying for both of you. Stay Strong

Kathy

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