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Someone's Prayin', Lord...

Mom just talked to the surgeon's office, and was told that the person who had an appointment for next Tuesday isn't providing insurance information, and that if she can't find it by Thursday, I may get my electrodes inserted next Tuesday!

And with the seizures and semi-insomnia I've had lately being followed by this apparent opportunity, I think it's clear that God wants me to enter sooner. Praise the LORD who cares for His children!

Please continue to pray that all seizures will be found to start in the anterior mesial left temporal lobe of my brain. Those were the doctor's orders!

Give Thanks in All Conditions

After having some powerful medicine injected at the hospital last night, to stop the seizures and also improve my sleep, I woke up this morning at about 3 AM, and after about 20 minutes I asked Mom and Dad for help. I was advised to take some Tylenol, and spend some time praying and reading in the living room. About an hour later, they came and joined me, apparently having spent the time which could have given them good sleep thinking about how to solve my difficulties. After some time talking and looking at information about the medicines which I am taking, I took my morning dose, was told to fast until after blood samples are taken later this morning to investigate the blood-levels of my medicines.

Now for the title. Though I would not be surprised to have more seizures, I haven't had any yet today, (and yesterday my first of three started about 4 AM). And my parents are going to trouble, sacrificing precious sleep, out of love for me. Because I am having sleep trouble, which has long been a notorious trigger for seizures, we will be asking today if I might be able to have my depth EEG sooner- and event I've been eager for, and with the current schedule would overlap some school events, such as graduation, which I might now be able to attend if the surgeon has time soon.

Whether the "maybe" hopes above are fulfilled or not, these past few days have been some of the most wonderful time of my life, for though I have had five seizures plus more auras that didn't generalize, those very events have been a great opportunity to observe the love of the parents God has blessed me with. These direct observations of love are complimented by finding out after an event what others have done for me while I was unconscious, such as Rachel's phone call on Saturday night and the prayers of others at church yesterday.

I will sing praise to the Lord, who has drowned me in His Love which He displays through His servants around me on every side! Though I suffer from an illness, I thank God for the lessons He has taught me through it, and for the healing that appears to be pending!

More

David had three seizures today (Sunday) so we finally called the doctor. The answering service said if we want to see the doctor, go to the ER! Alright, so Bijan took David tonight and they gave him some Ativan which is a good knocker-outer. He's still standing though. Hopefully this will stop this cluster. Three weeks to go till we WANT seizures in the hospital for the EEG. We can do this!

Our church is so great. David had a seizure this morning out in the lobby and there was so much kind concern and prayer. We are being lifted up and carried through this, not going through it alone.

We need prayer for strength and peace. And of course that this round of seizures would stop. Thank God for the fabulous doctors we have here, just 15 minutes from home. Thank you, thank you, thank you!

Another flare-up

David had a seizure last night at home while we were out at care group. Everything was so quiet for a couple weeks. I usually try to figure out if there is a trigger for it -- this time I'm blaming lack of sleep. Since he started Klonopin the seizure control has been great but for some reason he wakes up early in the morning. (Dr Maleeva thinks we're strange since Klonopin usually makes people sleepy, groggy, dopey, etc.)

Anyway, it was amazing that David actually had enough warning to call Bijan's cell phone to tell him he was about to have a seizure. He got a few words out then Bijan could hear him making noise. Rachel was home with him so after a few minutes she called and told us what was happening and assured us that David was ok.

Interesting context: at care group we asked for prayer for our kids at home as Bijan and I had planned to take a little Cessna trip to Santa Barbara today (Saturday), eat lunch and spend time on the beach. Bijan was thrilled with the romance of it all. (My thoughts were more along the lines of having enough air sick bags, cold water, cool enough clothes to live through this 90+ degree day in that little flying oven.) So we had to cancel these plans but were very thankful that David had a seizure before we left, if he was going to have any. God is so unpredictable--this was not what we were praying for!?! But we are learning to go with the flow and be thankful, whatever.

So far this morning he is fine. I gave him a bit extra sleeping medicine last night so maybe that is the next step.

As we learned in Latin: Deo Gratias!!

A Seizure Last Night, But Feeling OK

As you can see by the blog posts, I haven't had a seizure in about a month and a half, which is a good amount of time.

Last night, while the rest of the family went to our church caregroup, I stayed home to do school-work, and my sister Rachel stayed to watch a movie. At about 9PM, while Rachel was getting ready for bed, I felt a seizure coming on, and so I rushed to the phone and called Dad's cell phone. By the time he had picked it up though, I wasn't able to say much, but it was understood that I had a seizure, and I was safe in a chair until they came home, and gave me some extra medicine.

This morning I am doing pretty well, and though it has been a pattern that one seizure is followed by more, I am feeling well and haven't had any small auras yet, as I did for a few days after the two seizures that were posted about on April 11.

New prescription

Wow--Dr Maleeva (neurologist) spent a full hour with us on Wednesday. Someone must have prayed, so thank you!

She explained thoroughly about the depth electrode surgery. I mentioned that I'd been talking with a mom whose son had the grid last summer; he'd had complications, and they didn't get enough tissue out when they did his therapeutic surgery, so he is still having seizures. So Dr M spent a long time telling me how that case was difficult and David's seems more straightforward. She drew sketches of brains and probes and grids to illustrate all the things she was saying. It was cool if you like technical medical stuff and can keep your mind off the personal aspect.

The best case scenario for David in this coming step is if the probes detect his seizures starting deep in the mesial temporal lobe. Also, they want to see one probe detect a seizure for 5 or 10 seconds then see it spread to other probes.

In simpler terms, she then told us: 'Wake up every morning and say, "God, please let David's seizures begin in the mesial temporal lobe!" ' There we have it. Thank you for joining us!

Next up...

Wednesday (4/16) David sees the neurologist for a checkup.
He hasn't been feeling as good as usual since the Klonopin he started last week is having some minor side effects. It's like taking Benadryl over and over and over--you feel a bit edgy and not quite yourself. He also might have a cold coming on and has a little fever, which often triggers seizures.
Please pray for a good doctor appointment, for good health, and for us all to be patient with these next 5 weeks of waiting.
Thanks so much for all the support and encouragement we enjoy!

Two Seizures, Calming Down

Sunday I played Ultimate Frisbee with some friends after church, got rather tired, and, imprudently continued. After two games, twenty goals total, I started playing the third game and a seizure began. I was able to tell a friend before the relatively short aura ended and I went unconscious. I awoke later with him still sitting next to me, as a very good, helpful and faithful friend.

Rarely do I have one large seizure and not have another. Monday I had a seizure in front of the laptop I'm typing this blog on, with a rather short aura (conscious period of a seizure) again.

Since then, I have had several small auras every day, but no more have yet become grand mal.



I am very thankful for the weeks with no seizures, for the extreme conditions needed to start Sunday's seizure, that there was only one following seizure, and for the family and friends I have!

Two more good days

David felt good yesterday and today so thanks for all the prayers.
He is taking Klonopin regularly now which can be pretty powerful but he doesn't seem at all groggy. Some meds that are supposed to have minimal side effects have been a lot worse for him than this--a lot of managing epilepsy seems to be trial and error.
It sure is easier to take a day at a time when days are like this and not like last Sunday and Monday.

Another quiet day and night!!

Thank God David had no seizures yesterday or during the night. He is feeling vulnerable like he might have one but this is an ok way to continue. In six weeks they will want him to have seizures in the hospital.

We spent a couple hours with Bethany Baird having senior photos taken yesterday afternoon, some in the studio and many in Eaton Canyon. David really got into it by the end. It was a great outing too. When we get the photos it will be fun to add some to this blog.

-Beth

All Quiet

David had a good quiet night. Yahoooo! So thankful.

-Beth

Seizure day

After a beautiful weaning off Depakote, tapering off the medicine for four weeks then another week of none, all with no seizures and no auras*, David had a seizure Sunday afternoon while playing ultimate frisbee on the church campus, then another one today around noon. We are adding Klonopin to his meds which will hopefully help. It may make him pretty groggy but we just have to make it to May 20. Please pray that he won't have such frequent seizures that we have to have him go back on Depakote or delay the phase 2.

Thanks--
Beth/Mom

*Auras are a warning feeling preceding a seizure and sometimes they don't develop. For David they usually mean he is not very resilient and may have a seizure before long.

Phase two in May

Dr. Ian Ross, neurosurgeon, put David on the schedule for a Phase Two stay in Huntington (Pasadena, CA) on May 20.

Goodbye to Depakote

One of David's medicines has to go as it thins the blood which is not good for brain surgery. He has been weaned off it over the course of a month. (March)

Phases of pre surgery testing

To get to the point of having brain surgery to remove a bad spot that causes epilepsy a person goes through several phases of testing. Phase 1 is the hospital stay with electrodes epoxied to the surface of the scalp, and seizures encouraged so the doctors can trace where they come from.

Phase 2 is a similar procedure, but with wires inserted through the head into the brain. One method is called depth electrodes, with long probes going through holes drilled in the cranium. The other uses a grid which is more invasive to get put in place, and involves recovery in the ICU and a whopper of a headache.

History of David's epilepsy

David was born in January 1989 in California. He was the most wonderful baby ever! He was an early talker and very bright and loving.

In early 2000 he complained of feeling funny.

In May 2000 he had a recognizable seizure.

June 2000- diagnosis of complex partial epilepsy. Began medicine. (Tegretol)

Late 2000- seizures at a rate of several a week; he would become unconscious and fall down.

January 2001- switched medicines to Topamax. (Dope-a-max!) Bad side effects: very slow speech, very poor memory, cognitive disaster.

June 2001- Started seeing Dr. Huf, neurologist. Heard the word 'surgery' for the first time w/ regard to David's treatment. Yikes.

August 2001- Guest of Huntington Hospital's Epilepsy and Brain Mapping unit for video EEG. Electrodes epoxied on the noggin then tried to have seizures. The point: to identify a spot in the brain where seizures originate. If so then maybe it can be removed and voila! no more epilepsy. Results: not clear. More testing recommended.

August 2001- Dr. Huf (bless him) took David off Topamax and started Lamictal.

Fall 2001- Lamictal somewhat better re side effects, less seizure control. David now having 1-2 seizures per week.

February 2003- David began taking Keppra, another anticonvulsant. It cleared up a lot of little seizure feelings he had, many times a day. And for seven wonderful weeks no seizures. Then they started again, at a rate of one every week or so.

June 2004- began seeing Dr. Imbus (bless him) who added a third drug, Depakote, to David's medications. Seizures reduced a lot, down to several situations such as fever and exertion. So if he could only not work up a sweat or catch a cold or fever ever, we'd be done! hmmm.

Summer 2004- Another video EEG vacation, this time at UCLA. Again inconclusive.

August 2006- Surgery. But twelve inches south of the brain. David got a Vagus Nerve Stimulator unit which is like a pacemaker with a lead attached in the neck to the vagus nerve. The vagus nerve runs up to the brain and down to the stomach. It somehow tells the brain not to have seizures and tells the stomach it is full. It also tells the brain it is happy so the gadget is approved for treating depression. A panacea!

Fall 2006 to Spring 2007- the VNS allows David to exercise without any more seizures! Yeah! But it causes insomnia, which is a little-reported side effect but does show up in the manufacturer's list of patient complaints. Poor sleep caused more seizures. But unaware of what was going on we would see more seizures, then have the doctor turn up the doses the VNS was delivering. Finally in May David was totally exhausted. We figured out what was going on and got David on sleeping medicine. Ahhh- problem solved and David felt great. Still having unpredictable seizures triggered by slight fevers. Medicine side effects are also a major problem.

Spring 2007- started seeing Dr. Sutherling.

July 2007- ten days in Huntington Hospital for a third time around with video-EEG. Medicine doses drastically reduced to induce seizures for the EEG. Unfortunately seizures spread too fast to show where they come from. But doctors felt optimistic that David does have a "spot" that might be removable.

Fall 2007 to Winter 2008- testing to move toward surgery.