Jul 26: Start the Day Early

I had finally gotten to sleep around 4 a.m. when Weslee burst in at around 6:30. He had already had one 'medium plus' seizures and then a second before he could get to me.

I hate to say I didn't hear either one. We have so many fans going that it is difficult to hear anything. And it is still sweltering.

The whole day was full of seizure clusters. Taking an extra clon didn't help. The nasal rescue helped for a little while.

He is so frustrated with the dag-blasted seizures, as am I. I wish I could do more for him.

........

Weslee needs more brain surgeries for his seizures.  To help, please like, follow and share .. PLUS .. please go to his Medical GoFundMe or to our Paypal ... Thank you.

Jul 23: Checkup at PCP

I scheduled today's doctor appointment last week when Weslee had another episode of severe abdominal pain. Glad I did, because I also wanted him to check out W's back from last night's fall after seizure number ... 3 (?). [Just a scratch .. plus maybe some bone bruising .. keeping an eye on it.]

His BMI looks good for now .. but .. less than a year ago, W weighed 188. A bit chunky but not nearly as bad as me. Today ... 149 pounds!!! A massive drop of 40 pounds. Why? He just doesn't feel like eating. 

He left a pint of chocolate chip cookie dough ice cream sit in the freezer for over 4 days before eating. If you know him at all...that is nearly impossible. His longest stretch of saying no to ice cream prior to that was maybe 48 hours.

When I cook, I try to make his favorites. Sometimes he will even turn those down.

Weslee even said no to carrots, strawberry/banana juice, and pasta alfredo!

The PCP asked all kinds of questions to try to ascertain if he is depressed. Nope, not that.

The weight loss is just one more thing to watch. 

He has also developed headaches. The seizures are mutating...half the time I can't figure out what kind they are. And the sudden fits of anger and tantrumy behavior is overwhelming.

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Weslee needs more brain surgeries for his seizures.  To help, please like, follow and share .. PLUS .. please go to his Medical GoFundMe or to our Paypal ... Thank you.

Jul 13: Heat vs Seizures

We had a pretty mild winter here in Kentucky. Snow only a few times. Below freezing less than a handful. Weslee and I thought maybe we will have a mild summer as well.

Yeah.

No.

We had high 80s low 90s before summer even officially started. Here we are, just 3 weeks later, and Friday temp was 97! 

Unfortunately, I had two errands that I absolutely needed to do on Friday. I took a bottle of water with me so I thought I would be fine. By the time I got home, I had mild heat exhaustion. Had it before 5 or 6 times in my life, so I recognized it. Did what I could do, and finally made it upstairs to check on Weslee, and to lay down.

With the temp being so high INSIDE this place, he felt a bit fried too. Also had been having seizures for hours. No tonic clonics, thank goodness, but a mass of his smaller ones, like absense, gelastic, and tonic without the clonic.

Since his safe space is his bed, and he is supposed to stay there while I am gone, he didn't fall during any of them.

But these seizures, especially the absense, lasted all through Saturday. As Sunday's dawn approaches, I hope the seizures will be back to normal today.

He can't handle the heat any more than I can.  Really hope the little a/c units get here this coming week. Having downstairs be 15-20 degrees cooler than upstairs is ridiculous.

Will keep you posted.

........

Weslee needs more brain surgeries for his seizures.  To help, please like, follow and share .. PLUS .. please go to his Medical GoFundMe or to our Paypal ... Thank you.

Stress equals seizures

This is Weslee trying to have breakfast but at this moment...  'nobody's home'. ABSENSE seizure. He dropped so much of his breakfast that he barely had anything left.

So much stress equals so many seizures. 

I caught him on the stairs yesterday... literally CAUGHT him. Glad it was pretty much at the bottom of the stairs. But ... no wonder my back hurts so much.

(No, he is not totally naked.)

Appointment with Epilepsy Specialist

(Link Repaired)

My son, Weslee, is 27 years old, going on 12. We have autism, OCD, and uncontrolled epilepsy to thank for that.

If you follow me on any social media, you may know that Weslee's seizures haven't gotten any better, despite brain surgeries, medications, therapies, diets and the latest, a VNS device implanted. He has a lot of break-through seizures of different varieties, and all with no forewarning.

It's gotten to where he has a "safe place": his bed.  He feels (as do I) that if he is already in bed when he has a seizure, he won't fall down the stairs (again), or back into a door and put a hole in a wall (again) or hit the edge of the bathtub on his way down (again again and again).

Weslee in Emerg Dept after a seizure knocked him against the bathtub and floor. Nose broken. 

Weslee's local epilepsy doctor and team (he's had 3 or 4) have run out of suggestions, so they have recommended him to the Cleveland Clinic. He has an appointment there next month, but we need help getting there.

• My car won't make it there (no brakes, engine messed up). I will need to rent, get mine fixed (estimated to be over $5,000) or get a "new" vehicle (see below ps).
• Gas for vehicle.
• Hotel for first few nights for us both, then just for me if I can't stay in his room.
• Meals for us both, until he is admitted to a room, then just my meals.
• Hot spot because we will need a secure internet service, and I don't trust hospitals.
• Other incidentals, like getting him a new movie to watch, or anything else I need to get to keep him busy during his EMU (epilepsy monitoring unit) stay. 

So what do you say. Can you help us?

Help Weslee Get His Life Back: 

paypal.me/VIKKIWESLEELAWRENCE

Thanks.

p.s. Weslee and I are losing faith and find it hard to believe that we can't even mitigate some of his seizures. He is tired of all the medications. Of keeping an eye on the clock to take them at the right time. Of being afraid to walk down the stairs if I'm not around. Of falling and hitting his head or breaking his nose...again.  

He wants to get in a van and just start driving. To meet people he has talked to online. To take a "safe place" with him ... in the form of a special-built camper van.  Believe me... this is WAY down the line as we have to get through the Cleveland Clinic tests and so forth first. 

Too Many Seizures

Weslee was admitted to a hospital just last week but he got worse.  Just take a look at my calendar where I tried to keep track of his seizures:

Multiple seizures at home:

Off to the ER/ED/Hospital:

Just looking at the vid with no context, it appears Weslee is listening to a vid on his phone and laughing about it.

Now look at his eyes and his mouth movements.

Hospital E.R.

Weslee started throwing up (which he rarely does) and having a huge cluster of seizures. I became extremely concerned so I somehow got him down the stairs and out the door.

He was there for quite a while, as they had troubles getting the seizures under control too. 

Part of the problem was that one of his seizure meds wasnt registering in his blood. Turns out, he MUST take the brand version and never again generic.

Too Many Seizures

...had 6 seizures in 55 minutes, then nearly 20 minutes of nothing, then just now...a TC (tonic clonic). Somehow cut his hand in the first 10 seconds of that TC.

I hope to hell he is done for the night. He has had a rough evening.

TC Seizure Captured

We got the big one. HUGE tonic clonic. The picture shows him in the post ictal stage... body stiff, nobody home.

We should be able to go home in a day or two. Will put him back on his meds, possibly slowly as to not overwhelm his bod. 

Any more seizures between now and discharge are bonus!

EMU Stay Commences

Weslee is all checked in at the emu ward in a local hospital. He has been in this one before, and they are pretty good. Slid through registration, got his "fall warning" plastic bracelet, then up to the room.  

A flurry of activity ensued. One nurse to take a history and list of current meds. Another to get him settled in the bed with a hospital gown on.  (He could just wear a button-down shirt but prefers the gown as they are easier to change.) One nurse started the IV, which is necessary to give him seizure meds during the more nasty ones. I usually participate in all of the conversations.  Multi-task-hearing-conversing seems to be a requirement.

Side note: Part of his autism thing: He is convinced a freckle in his inner elbow popped up a few years ago because of so many IVs in the same place, so that's where he wants all future IVs. AND....the tape that comes with IV makes him itch so he has a lot to tell the nurse about that, and gives out options that some nurses are kind enough to at least pretend they will consider.

Once all of those were done, an EEG tech comes in with all of the wires/leads, stinky glue and other supplies.  It takes about an hour to attach them all at the proper places, and check to make sure all are correct and working. I require the room door to stay open as otherwise, I will pass out from the glue fumes.

So...

Two seizures in the last two hours...and this is with him still on all meds. Hosp/Dr. will withhold meds tonight and tomorrow morning in the hopes to get a TC (tonic clonic).

They already have enough data to show that while he has always only had seizure activity on the right side of the brain, the EEG now shows significant activity on the left.

W's nose is doing better

Weslee is looking better. His nose swelling is going down and the gash, although still slightly leaking, is healing. His body still hurts.

Meeting with his epileptologist's office in a few hours. Going to discuss a change of meds, treatment options, and/or testings.

BTW...we are both coughing. Will get a CoVid test later this week.

ER says broken nose from TC

Broken nose. Has a sliver that splintered off. Can't do anything until nose heals and swelling goes down. He is 'terrified' about it. No stitches; just steri-strips.

Back home and sleeping. Promised to order in food after he sleeps a good chunk. Might as well, since we have both been exposed to CoVid, and are now quarantining.

Last post for a while. Going to sleep too!!

Still at ER for nasty TC

Finally taken back to be examined at 7:15 a.m.!! Yes, over 9 hours in the waiting room. Damn pandemic.

Nose still bleeding but nurse says prob no stitches. Drawing blood now.

We are sooo tired and just want our beds. I still have all of that blood to clean up.

Ugh.

Bad TC tonight so we are at Emergency

Sitting in the emergency room. Weslee had a tonic clonic (grand mal) seizure tonight...at 9:49 ... for four minutes. Was in the bathroom and fell against the door so I couldn't get to him. Banged face on floor (we think ... he doesn't remember) so I have lots of blood to clean up when we get home. His nose will probably need stitches. Blood in hair; not sure if there is a cut or if it is residual.

Post ictal phase lasted almost an hour. He is still slurring. He has had another six seizures (diff kinds) since we got here.

Hope they take us back soon. Been here almost three hours. Full waiting room and many people are coughing. Prob CoVid.