Thursday, July 15, 2010

In Which Connor Has A Seizure And Holds Up Traffic

This morning Connor had his neurology appointment to figure out what kind of new medication we would be adding to his regime.  The appointment was for 8:30 in the morning, and since we live about 45 minutes away with a normal commute and would be traveling through rush hour traffic, Connor and I left the house a little less than two hours before the appointment, figuring this would be plenty of time to get us there.  I totally didn't factor in the possibility of Connor having a seizure while we were on the highway into the mix, though.

Yes, Connor had a seizure in the middle of rush hour traffic on Highway 167.  Fun times.

We were in the far left lane when he started seizing (Rowbert, our van, has a handy mirror mounted just above our rear view that is pointed at Connor so I can see him while I'm driving) and I actually saw him slump over.  I usually keep one of his shoes off in the car when I'm driving by myself so that I can tickle the bottom of his foot to double check whether or not he's actually having a seizure or just messing around; his wheelchair is positioned in the middle of the van so his feet are within easy reach of my hands.  Sure enough, there was no response from him.  There was no shoulder on the left-hand side of the road-- just a barrier.  So I hit the warning lights and the horn, launched over two lanes and jerked the car to a stop on the right shoulder.  I hit the button to deploy the ramp as I was getting my seat belt unbuckled and ran over to the side of the car. 

Connor's face and body were already an alarming shade of gray, because even though he hadn't quite stopped breathing yet the safety harness on his wheelchair was keeping his torso almost completely upright, which meant that his chin was folded down onto his chest-- not the easiest of positions to get adequate air into one's lungs in the best of circumstances.  I unlatched him and quickly laid him down on his side in the soft dirt of the shoulder with the van between him and traffic.  About ten seconds after I put him down he stopped breathing altogether, so I rolled him over on his back and began mouth-to-mouth.  He started breathing again after about 30 seconds, and the seizure was over and he regained consciousness shortly afterwards.  The total amount of time from start to finish was about two minutes.

While we didn't end up needing the help, major kudos to the four cars that pulled over onto the shoulder with me-- one as soon as I hit the warning lights and the horn, and three more after they saw me pull the little guy out of the van.  One man handed me Connor's oxygen and let the other three know what was going on, one offered to direct traffic as needed, one ran up already on the phone with 911, and the last was ready to help out with whatever I asked for.  It's pretty awesome to have so many people, all probably on their way to work, pull over to help out.  If Connor had ended up needing the additional help, everything would have been already taken care of for me.  It's fantastic to live in a state with so many good Samaritans!

So at any rate, our trip to the neurologist's was rather delayed.  As we got back on the road, I called (via my shiny new hands-free device-- I had no desire to add a car accident to the morning's excitement) the appointment line to let the hospital know the circumstances behind why we were running late.  The woman on the phone informed me that if we were more than twenty minutes late for our appointment, regardless of circumstances, that we would have to reschedule.  Period.  Now, I am well aware of the fact that neurologists are extremely busy people and they see a lot of patients during the day, all of whom are there for equally important reasons.  We don't deserve special treatment.  But I believe there are such things as appropriate mitigating circumstances, and also I was on a major adrenalin high (doing mouth-to-mouth on my son on the side of a highway has a tendency to do that to me) and there was no way that I was going to turn back around and go home without seeing a neurologist.  I kept driving and called the nurse line to leave a message and let them know what the situation was.  The nurse called back while I was on the phone with Jeremy letting him know what happened, and she left a message saying yes, for goodness sakes we should come in no matter how late we were because the neurologist absolutely wanted to see us.  I was pretty glad I didn't take the appointment line lady's answer as the last word on the subject!

So we pulled in, and I wheeled Connor, who was in full postictal stage and thus extremely crabby and sleepy, into the hospital.  The check-in desk clerk, who I suspect had been taking lessons from the appointment desk lady, initially didn't want to let us check-in because we were more than twenty minutes past our original appointment (not that I blame either of them, as I'm sure it's hospital policy), but a quick call back to the neurology department fixed that issue pretty immediately, and we didn't even have time to walk over to the chairs before our buzzer was going off and they were ushering us back to get Connor's vitals.  The neurologist saw us less than five minutes later.

So that was great-- he talked about our options, and said that while he'd really like to refer Connor for a vagus nerve stimulator (VNS) pretty immediately the consensus after discussing the little guy's case with the rest of the department was that we need to try some more medications before surgical intervention, which made me breathe a big sigh of relief, as I'd much rather exhaust non-surgical methods first.  He said that based on the pattern we've been seeing with Connor's seizures, where a new medication works really well for a few months and then seems to lose effectiveness, that it's probable the little guy's body is forming an increasing tolerance for the medication and larger and larger doses are needed to do any good-- something that's not all that uncommon among children with unusual seizure disorders like Connor's. 

He also checked Connor's reflexes and responses-- this is the first time he's seen the little guy close enough to a seizure to be able to observe his postictal state-- and while I couldn't feel a difference in muscle strength between Connor's two sides this time, the doctor noted a major difference in Connor's reflexes on the left side versus the right.  Since this is the third seizure in a row in which Connor has had a weakness on the left side afterwards, the doctor said it's probable that we'll see this in varying degrees every time Connor has a seizure from now on.  Apparently it's common for children with complex seizure disorders to have changing symptoms as they grow older-- even when the type and trigger location of the seizure remain the same.  So we can expect that from now on he may be temporarily weak or even paralyzed on the left side for up to two days after a seizure, and there's not a thing we can do about it.  Fantastic.  At least it's not supposed to do any permanent damage, which is a very, very good thing, but I'm still not thrilled about this particular development.  Oh well.

At any rate, Connor will be coming off the Trileptal and starting a new medication called Tegretol-- which is in the same family of seizure drugs.  If this doesn't work, they've got two more medication combinations they can try, and then in the event that those don't do the trick our neurologist will probably start pushing for a VNS again.  We'll be weaning Connor down off the Trileptal over the next week at the same time we're putting him on the Tegretol, and hopefully it will be a relatively smooth transition, though we may end up with some breakthrough seizures.

So we walked out with a game plan, which was fantastic.  I went ahead and called Connor's occupational therapist and canceled our session for the day, as there was no way the little guy was going to do any meaningful work after a morning like that, and since the adrenalin had worn off I was sort of exhausted too.  But Connor still wanted his reward book (yes, he gets a new book every time he goes to the hospital for an appointment, which helps keep his outlook on hospitals relatively positive and also explains the ridiculous number of books he has) so we stopped off in the bookstore just down the street from the hospital and then headed home. 

Connor and I rounded out the afternoon by taking a four-hour nap, which was much needed.  After Jeremy got home I went off to the gym and exercised away some of the stress of the day, and now that I've written a post that is kind of ridiculously long, I'm off to bed.  That flight-or-fight response thing really wears me out.



xraevision said...

Wow, Jess! I can't believe that whole scenario took only a couple of minutes! You described it so well that I held my breath and time stood still. I could, moment for moment, remember the automatic way that I would react to X's blue spells, especially the one that happened in traffic. Amazing that so many kind people were paying attention and willing to help! It's comforting not to feel alone at a time like that. Big hugs to you.

leah said...

Oh, wow. It is awesome that people were so helpful, but it sucks that he had another seizure. Thank goodness you have a mirror that focuses on Connor in the backseat. I hope the Tegretol works to stop the seizures.

The front office people are always "stick to the rules," but there are circumstances that override any rules. "My kid stops breathing," is a really good reason to throw all appointment time rules out the window. At least the nurse realized the gravity of the situation!

isabelkhan said...

What strength you have! You are an amazing mother. You are the true Supermom. Connor's hero.

Julia said...

Hmmmm. Well, I'm so glad there's a game plan and that you have some options to try before considering surgery. I'm not at all glad that you had such a harrowing experience and such a rough day. I actually teared up a little to read about the good samaritans. Such a different scene from when gawkers were trying to take pictures on their cell phones -- disgusting. It's reassuring to know that there are genuinely good people out there. Here's hoping you catch a break for awhile.

Niksmom said...

Breathing a sigh of relief hat there's a new plan in place and sending prayers your way. God bless the good samaritans!

Julia said...

Y'know, I was so upset by these continued seizures that I had to go back and read your post about Connor at the beach, and his breakthrough moment of picking up the sand. That helped. I guess "even keel" is not the best description of your life these days.

Wherever HE Leads We'll Go said...

Jess, I am so sorry to hear this! You handled it like a pro (hate that this happens so often, you know exactly what to do, but it is great that you have the wisdom to handle it well).

Reading about the people helping did bring tears to my eyes. That is wonderful that so many were there to assist.

As for the appointment lady - all I can say is "are you kidding me" - well I could say more, but I am trying to be nice.

Praying these new med changes help to keep these seizures under control. It would be nice for you to have a nice long patch of boring, uneventful days!

Julia O'C said...

I couldn't stop thinking about you guys last night. I know that when you deal with Connor having a seizure that you're just doing what needs to be done but still, I can't help thinking that I wouldn't handle it quite so well.

I'm crossing my fingers, toes, whatever that this new medication gives you all a much, much needed break from this.

Ashley's Mom said...

My daughter is 15 years old and we have been traveling this medication shuffle forever it seems. Puberty made things even worse. Right now she is on 4 seizure meds, and still has 3-5 a day. They are not the worst seizures, but they are seizures, nonetheless.

Right now Ashley is on Depakene, Topamax, Trileptal and Keppra. In the whole scheme of things, this cocktail mix has worked the best.

Here's hoping your new mix makes a difference. You both need a break!

A said...

You are such an impressive woman and mother---Connor is very lucky to have you!

Herding Grasshoppers said...

Wow. Just wow.

Just reading this my emotions go all over the place. I'm amazed that you hold things together so well!

And hurray for Washington and good samaritans :D

Praying again for Connor,


Kristina said...

It seems to me like there is way too much excitement in your and Connor's life lately! I sure hope this new action plan helps things to settle down quite a bit.

Also, I'm glad the neurologist still saw you - if he didn't it would have been criminal. And, that he is consulting with his whole team to figure out the path forward.

Katy said...

I HATE that Connor had another seizure and I hate it even more that you practically had to stop traffic to deal with it.

Those hospital people sound horrible, but I know where they're coming from--I once had a student that claimed that she couldn't go to school because she "could feel a seizure coming on." Numerous tests revealed that she didn't have any seizures at all. I'm guessing people get jaded.

I was wondering, since Connor is tube fed primarily, have they given any thought to the ketogenic diet? I know several people who've had great success with the diet.

Colleen said...

Oh my goodness, I needed to take a couple of deep breaths after this post. Whew! Go Mom! I'm sorry that the Dr. office gave you a hard time about being late, but I'm glad they could see that the circumstance was reason enough for him to be seen.

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