E is for Epilepsy: Good News, Less Good News, and Adjustments

A few weeks ago, we saw Jake’s neurologist for test results from his latest EEG.  Because I didn’t post about the EEG and since Jake is super cute, I’ll walk you through the EEG first.

First, I’ll remind you of where we are or introduce you to our story.  If you want the long version of any of this, our whole journey is on this blog under “E is for Epilepsy”.  Jake was diagnosed with epilepsy in December and has responded amazingly well to his medication.  The mood swings, the anger, the frustration, the inability to sit still, the headaches, and the seizures have all diminished greatly.  Until an EEG shows that there are no seizures, we have to keep doing them and adjusting medication.  The EEGs are all sleep-deprived tests, so we all get to stay up very late and get up very early.

We had Jake’s second EEG in March.  Since we already knew the drill, I felt like I was okay to manage the day on my own.  Greg stayed up with Jake until 11 p.m. while I took a sleeping pill at 9:30 p.m., and set three alarms for 3:30 a.m.  I woke up, got Jake up, and kept him awake with a minimum of fuss.

Jake loves to dress up for doctor’s visits, usually in his medical scrubs, but this time, he wanted to wear his Superman cape.  Jake is a very cute kid, but with the addition of the scrubs or the cape, he melts everyone we meet.

This is my little superhero on our way in to the hospital:

EEGblog2

Jake did a minimum of hopping, jumping, and generally being nuts in the waiting room before we got called back and began the process of getting him hooked up to the machines.

This is not a comfortable process and unfortunately, Jake had a rough time with it.   The tech has to scrub his scalp, face, and chest with a gritty paste to make sure his skin was completely clean for an accurate read.  He hated this part and I ended up getting up on the bed and singing to him while he got hooked up.

EEGblog

Once he was hooked up, the hard part was over and except for having to blow as hard as he could on a pinwheel for 5 minutes straight, he thought the rest of the test, especially the flashing light part, was really funny.

EEGblog5

After this part, he and I got to curl up and take a nap while they read his brain waves.

He slept for about 20 minutes and the test was done!

EEGblog4

On the way out, we had to stop and do a pose in front of the Neurology door, which has moon and stars on it.  If you don’t know my history with sun, moon, and stars, it’s here: https://sistertwo.wordpress.com/2011/11/22/sun-moon-and-stars-the-tattoo-story/

And here’s Super Jake!

EEGblog1

To keep me awake and capable of driving and functioning, I needed a lot of coffee.  I overestimated how much I needed and when we got home, Jake took a nap while I buzzed and hoped my heart would eventually stop racing.

We all recovered just fine and then began waiting for the results, which we got last week.

The test results had both good news and less great news, since I’m refusing to call it bad news.  The good news is that JAKE IS OFFICIALLY SEIZURE FREE!

The other news was a little more discouraging.  The EEG still showed spikes in his brain activity.  Those spikes, without medication, would have become seizures.  A seizure happens when a spike lasts for 10 or more seconds.  He still has spikes, but they are only 2-3 seconds, so they are not considered seizures.  He shouldn’t be having any spikes at all, so we are adjusting his medication by 2 ml a day and will do another round of blood work and another EEG as soon as the blood levels show the right amount of medication in his system.  I was really hoping for no spikes at all, but I’m okay with this process taking a little longer than I thought.

When we first saw our neurologist, she diagnosed Jake with Epilepsy with Absence Seizures.  Absence seizures, formerly called petit mal seizures,  are the kind of seizure that cause symptoms to just spacing out, except the person is not aware of what is happening.   Imagine losing 10 or more seconds, several times a day, and how that would feel!  If you are alone, it wouldn’t be as obvious, but imagine being five years old and in a Kindergarten class and how disorienting it would be if every 20-30 minutes your classmates had suddenly moved, your teacher was talking about something different than you thought, and someone was probably upset with you for not paying attention.  Pretty much, it stinks.

Upon reviewing Jake’s case a little more carefully, our doctor identified the seizure Jake had in October, the scary one, as a grand mal seizure.  Even though he didn’t shake, his muscles still tensed and released, he lost control of his body, he couldn’t speak, and he was unconscious for about 3 minutes.  With both grand mal and petit mal/absence seizures occurring, Jake has now been diagnosed with Generalized Epilepsy, which is a little more serious than Epilepsy with only absence seizures.

Since he has had more than one kind of seizure, the likelihood of Jake’s epilepsy progressing is slightly greater than we thought.  Thankfully, since the seizures are under control, we are hoping that the medication will take care of the epilepsy completely.  I was finally able to summarize all of this in a way that our doctor was happy with, which is that we don’t need to worry about the seizures, but we do need to be very watchful and I need to record any strange behavior and be careful to report it to her at our next visit.

As always, all of this is just one part of our life, but a big part.  I will be having a hysterectomy next week and while I recover, I will be trying to read as much of this book as I can:

epilepsy101

I’m hoping it will help me understand all of this a little better, get me familiar with the new language I need to be fluent in, and aid me in being the best advocate for Jake.

We are so thankful for the doctors, nurses, techs, friends (especially Heidi and Kara Sexton!),  and our family who have supported us in our journey so far.  Jake especially loves our neurologist, Dr. Chitniss.  He insists on dressing in his scrubs to go see her and she always calls him “Dr. Jacob” and asks how his patients are doing and what surgeries he has performed lately.  This time around she asked him if he could listen to her heart and I managed to catch this sweet moment:

DrC

We love you all and thank you, as always, for the continued prayers and support.  We are thankful to have people who cheer us on in our journey.

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Surgery #11 or “For Girlz Only”

Six months ago, I was really unhappy that I had to go through surgery #10 to remove a cyst from my foot.  Believe me, after the surgery I was done, I was really happy and not in an “I just had a whole lot of fun drugs” happy.  My pain levels went down dramatically, although the recovery was harder than I imagined.

So, here I am, six months and two days later, writing a post about another surgery.  (I swear, I’m not a surgery addict.)

On May 15th, I’ll be going under the knife, or in this case, under the robot, to do a hysterectomy and fallopian tube removal.

Before you freak out, let me explain.  Yes, I’m only 38 and although it’s technically possible for me to have another baby, the likelihood is up there with me shooting myself into space as a part of the Mars One Project.  I would like to have another kid, but I found out that as much as I loved Jake as a baby (and Jake, if you find this someday, I really, really loved you as a baby), I am not anxious to start staying up all night again.   I want more kids, but I’m just going to start putting “A Two Year Old” on my Christmas List and see what happens.  So, my uterus isn’t going to be doing any more producing.

Except producing everything it isn’t supposed to.  A recent ultrasound showed, and I’m not exaggerating, a uterus half full of polyps, a fibroid tumor, several ovarian cysts, and endometriosis spread throughout the rest of the parts.  You can imagine how lovely all that feels every month.  I’ve started having really bad symptoms.  Like, really bad.  No, seriously.  It’s terrible.  And, that’s all I’m going to say about that.

I will say that since I live with chronic pain anyways, I’m not anxious to spend two weeks out of every month either curled up in bed, or trying to walk around and wishing my heating pad was battery operated, or just being so stinking tired from lack of iron.  If I can eliminate even part of my terrible symptoms every months, then maybe, just maybe, I can start to be functional.

Functional is my goal.  Not fantastic.  Not marathon running or developing a newfound love of clogging.  Who knows how I will feel after this source of pain is elminated.  Maybe I  will start clogging.

I don’t like this part, but I am sad about only one kid.  Jake is so fantastic, that I can’t help but wonder what a few more like him would be like.  Then, I remember how active he is and I need to put on another coat of deodorant to deal with the hot sweats over the thought of more than one child like that!  Of course I wanted a big family.  I never thought one kid would be it.  The way I’m looking at it is that I am going to eliminate a huge health factor and if I got to pick one kid in the universe, how could I not be happy with the one I got?

Which is this kid, by the way:

funny Jake

May 15th is the date, which will ironically be one day shy of the 13th anniversary of my first breast cancer surgery and my official Cancer Free Day.  I’ll be doing a robotic assisted hysterectomy, which, when I heard of a robot, I immediately thought of this:

wall-e

Apparently, it’s more like this:

hysterectomy robot

So, if I wake up with no uterus, but also in the Matrix, promise me that you’ll come find me.

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Faces on the Long Road

I’ve often referred to the role I play in Jake’s special needs and health problems as “Mama Bear”.  I’m cute and fluffy and I like sweet things, but when I need to, I can stand up and roar really loudly until Jake gets the help he needs.

There is one issue on our journey though processing problems and epilepsy that can turn Mama Bear into Mama Dragon and this is when people are mean to my son.

This first year in public school has been difficult for both Jake and myself.  It’s been hard almost from the first day of school.  Jake is different.  I am different.  He has special needs.  I choose not to dress like a model or purchase coordinating workout clothes.  Jake has problems controlling his body when he gets upset and I have trouble caring about women who wouldn’t want to speak to me because the stripe on my jogging suit doesn’t match my running shoes.

From the beginning of the school year, I have been determined to be kind and gracious to the moms no matter what.  It doesn’t mean I won’t be direct or honest, but I won’t be mean or yell when I talk to them.  Jake, at five years old, with a brain that functions so differently and with a body that doesn’t always work the right way, has had trouble with yelling and pushing people when he gets upset.

Let me be really clear about something before I go any further.  In no way do I diminish the role of Jake’s behavior in the problems we are having.  In no way does he get away with being unkind to his friends.  I am on him when I see him do something he shouldn’t.  Even though he doesn’t always act the way he should, at least we know why!  I feel like the other kids don’t have the reasons he has.  Yes, the other kids are young.  They are immature.  They don’t really understand why Jake does what he does.  But, that doesn’t give them the excuse or right to be horrible to him.   Bumping into him on purpose just to see him melt down is awful.  Throwing things at him and laughing when he doesn’t understand what hit him is mean.  Pushing him so that he bumps into someone else really sucks.  Blaming him for their bad behavior is even worse.

Last night, Jake told Greg and I that “girls are friends and boys are kids”.  When we dug a little deeper, he said that boys are not friends because they are mean to him.  We talked that through and reminded him that he needed to be kind no matter what.

Later in the evening, though, the tears started to pour out of my face.  I realized that this is just the beginning of what is going to be a very long road for him.  Until he gets himself figured out, his body figured out, his maturity catches up with him, and we get the epilepsy totally under control, he is going to struggle and people aren’t going to understand why.

Up until now, I have been able to fix things.  I can make things better for him.  I can get him better therapy, different therapy, a different doctor, I can Mama Bear people until we get what we need for him.

I can’t fix this.  I can’t make people be nice to him.  I can’t make the parents understand what I’ve already told them a bunch of times.  I can’t make them teach their children to be kind or understanding of people who are different.

Right now, today, I am having trouble being kind to those parents.  I want to yell at them for modeling bad behavior to their children.  Yes, when you make fun of someone for not wearing cute clothes, your children hear that and think it’s okay to do it to their peers.  When you tell your child that their teacher can’t do anything right, they think it’s okay to treat their teacher like she can’t do anything right.

Greg reminded me last night to not spend too much time and energy on being angry at these people.  I don’t need to give them this much space in my head and my heart.  His advice was timely and needed.

The only way I can figure out how to not let them get to me is to say that mean people are just a face we are going to pass by on the long road to getting Jake better.  They’re just faces.  Faces we will walk by.  Faces we will smile at and keep on going.  While these are the faces that are throwing mud and nastiness into the road we are walking, our job is to get through the mud with a minimum of damage done.

I need to keep reminding myself when I am around these moms that “You are just a face.  That’s all the space you get to take up in my world.  You don’t get any more than that.”

While I am pursuing what is going on at school pretty fiercely, I know that my job is to continue to love, encourage, pray for and build up my son.  I need to be the safe place for him to come when he’s hurting.  I need to remind him that we never put our hands on people when we are angry.  I need to keep giving him tools for when someone hurts him.  (And, no, not showing him that little spot in your throat that really hurts if someone taps it!)  I need to model kind and good and loving behavior for people, even when they are being idiots.

I love that everyone who reads this blog is not just a face on the long road.  You have been my constant encouragers and make me laugh and smile when things hurt.  Everyone needs that in their life and I’m so grateful for it.

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E is for Epilepsy: The 30 Day Miracle

The Smith family are champs at the waiting game.  God has decided to teach us some important lessons about the value to be found in waiting.  I always know that if I order something online, it will arrive on the last possible date.  When we moved a year ago, our moving truck came on day 11, which was the last day they could come without giving us a full refund.  Test results always seem to take longer than they should and Jake and I have gotten great at playing games at stop lights and in longer than normal check out lines.

When we got the epilepsy diagnosis, our neurologist told us that the average time to seizure free status, which is the goal of the medication, is anywhere from 2-6 months and people usually go through more  than one medication before the right balance is achieved.

You can imagine my surprise when, at our last appointment, Jake’s neurologist said, “Well, I’m as surprised as you are, but we are going to consider Jake seizure free.”  I had to ask her to repeat herself a few times, but she kept saying the same thing.

Thirty days and one medication to seizure free status is very rare.  We will do another MRI in March to confirm that his brain has calmed down.  I just can’t wait to stay up all night with him again!

Since the seizures have stopped, school has also gotten so much better for him and therefore, for me.  He has a full-time aide, who is wonderful and who Jake believes is his girlfriend.  She is there to monitor him and to help him get started on his work and to give him hugs during math.  I wonder if my math experience would have been better if I had some hugs during math!  At the end of every day, I get a chart of his day and notes if he had a hard time.  He has had 10 green days (with no warnings or time outs) in a row and we are pretty stinking excited about that!  He has also gone from the middle of the class academically to close to the top of the class.  He is testing better, his comprehension is way up, and since his brain isn’t shutting down every few minutes, he is able to focus and track with his teacher.

As an aside to parents:  If you think something is not right with your kid and what everyone else is saying is wrong with your kid doesn’t sound right, pay attention to that little voice.  Keep pushing to find out what your gut is telling you!  I was told many times that Jake had ADHD and an anxiety disorder and it just didn’t feel right.

His behavior, attitude, and smart little mouth have all returned to the Jake that I had before we left Colorado.  Last week, his gymnastics coach came up to me with a big grin and told me, in great detail, how great Jake was during class.  I told him, “That is the Jake that I know and love and I am so happy that everyone else gets to see him now!”

We still have our struggles with a stinky Kindergarten attitude and a strong desire to eat nothing but graham crackers, but life has gotten so much easier and smoother over the last couple of months.

I don’t know why we got the “get out of jail” free card on this one.  We don’t usually and although I am a firm believer in God answering prayers, I have come to understand that He tends to answer prayer in ways that fit His plan and are for our eternal good, not our short-sighted good.  And, “good” doesn’t always mean what we think it means.

Don’t misunderstand me that our journey is done.  We are two years out from even considering weaning Jake off the meds to see what happens.  In the meantime, we have monthly blood tests,  EEGs three times a year, and constant monitoring.  I’m not happy with a few things I’ve seen lately, but I don’t know if Jake was spacey and exhibited some seizure like behavior because he was spacing out and tired and getting sick, or if there is something more that we need to deal with.  We still have a long road to walk, but we are already over a lot of the bumpy parts.

I am grateful that I have the cutest and funniest little guy walking with me on my long road.  My parents sent Jake a doctor outfit for Christmas since he wants to be a doctor when he grows up and here are a few pictures at his last neuro appointment.

Since he is so skinny, he is proportioned like a grown up, which makes his stride into the hospital even funnier:

Doctor Jake 2

He is doing really well at reading now, so he is actually reading some of the parts of human anatomy!

Doctor Jake

I’ve taken to letting him dress up as a doctor whenever we have to go visit a doctor’s office.  People are rarely there for a good thing and I hear the wave of laughter and funny comments that come after people see him dressed like this.  Everyone needs a laugh and if we can make someone smile in the midst of our own trial, I’m happy!

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E is for Epilepsy: Quick Update

I thought that I would write a few paragraphs about where we are now with our new journey in the world of epilepsy.

If you didn’t know we are on that particular journey, read this: E is for Epilepsy

Jake has been on medication to control his seizures for a week now.  We have started with a quarter dose, going up to a half dose after four days, etc.  So far, he is tolerating life on medication very well.  He always takes the medication without a fight, for which I am very thankful.  This morning, he was a little sad about it and yesterday, he told me that he didn’t need to take it anymore because he was “all better”.  One of those heart squeezing moments as a mom is when I had to tell my five year old that for a very, very long time, he is going to have to take medicine.

The bad news is that he is still having seizures.  He is averaging about one a day.  He knows when they are happening, so he can tell me for sure now that he had one.  That is a huge help since I can only document the seizures that I can verify are happening, not the ones I just think are happening.

Our goal is still seizure free.  I have now joined a few online groups and it gives me so much hope to see kids of varying ages holding signs that say “Seizure free for 378 days”.  Hope is so essential these days.

The good news is that the medication might be working more than we thought.  The problem with “absence seizures” is that they are hard to catch.  While I would never in a bazillion years wish grand mal seizures, the kind of misfiring in the part of the brain that cause people to fall on the ground and shake, they are very obvious when they are happening.  The neurologist told us that she suspected that he is having many more than we realized.  Since you have to be literally looking at him when they happen, they are hard to see and document.

The reason I think that the medication might already be working and slowing some of those absence seizures is because his behavior has changed quite a bit.   He has been much calmer, he is sometimes back to his funny and easy going self, he has been able to “listen and obey” with greater frequency, and there are fewer meltdowns and crying jags.  I feel like I’m seeing a glimpse of the old Jake on his return journey to us.  Since he is quite a verbal child, he was able to tell us exactly how he feels during a seizure.  He describes it as his brain going to sleep or sometimes like it is raining inside his head.  And, they hurt him.  So, the logic would go that if he is having those nasty feelings subside, his behavior will probably get better.  I can’t remember the last time I had the flu and was super fun to be around, so I can only imagine that the way he is feeling has been a major contributing factor for his rough behavior.

His teacher has given me more good reports than bad, which all by itself is enough to make me plan a trip to Disneyland to celebrate.

Jake is still tired and a little cranky and sometimes a little green around the edges, but I know all too well that medication is hard to adjust to, even if it is overall doing it’s job.

I’ve been really sick for the last two weeks and have been watching a couple shows on Netflix about medicine in the early 1900’s.  I am so thankful that we live in an era where epilepsy is not something that would have sent Jake to an institution.  It’s no longer something to be ashamed of or to hide.  We have come such a long way in the last 100 years and I’m truly thankful that there are doctors who understand epilepsy as best as they can and that there are 15+ medications for us to try if the one he is on right now doesn’t end up working.

I still haven’t had enough time to work through the emotions of all of this.  I’ve had glimpses of that particular carnival fun house and I’m not looking forward to it.

But, as I recently told my mom, our family can be summed up this way:  We are the ones who know all too well that it is darkest before dawn but we really can’t stop laughing at the dark.

It seems that Jake has inherited my sense of humor because when I asked him what he wanted to take to Show and Tell this Friday, he said he wants to take his MRI film so he can show everyone that he has a brain.

 

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E is for Epilepsy

I’ve been starting a lot of posts lately about Jake’s health with the phrase, “I’m not exactly sure how to say this…”.  This is another one of those.

If you have been following along lately, you know that Jake had a medium sized seizure in October, which led to the revelation of lots more small ones, several doctor visits, an MRI and an EEG.  The MRI came out clear and last week, we got an urgent call that the EEG results had been read and that we needed to get up to Sacramento to see the neurologist.

As a cancer survivor, Greg and I have strong reactions to that kind of a call.  I am eternally thankful for the company that Greg works for being cool with him saying, “Gotta go!” and leaving to come home and drive up with us.

To leave you all without the suspense we dealt with, I’ll cut to the chase.  Jacob has been officially diagnosed with epilepsy.

I am not going to assume that any of you really know what epilepsy is exactly and since I’m not a doctor, I won’t even try to explain it like a medical textbook.  The best I can do is to say that our brains fire electrical currents and sometimes the receiving end of those currents, for some reason we don’t understand, get closed off.  So, that electrical impulse has nowhere to go and bounces off the receiver.   That missed connection is epilepsy and the manifestation of epilepsy is a seizure.  The area of the brain in which the missed connection takes place determines what kind of seizure happens.

Jacob’s EEG showed unusual activity on the sides of both hemispheres as well as in the back of his brain.  So far, misfirings in those areas lead to “absence seizures” or the kind of seizure where it seems as if someone hit pause on the person’s body.  The good news is that this is treatable and that Jake will most likely grow out of it.  The bad news is that it could get worse and get worse at any time.  To prevent it from getting worse and to try to keep control of the seizures, we have already started medication.  Jake will be on medication for a minimum of two years.  At the end of two years, we will assess where he is and maybe wean him off meds, maybe decide to keep him on them.

Jacob is still only five years old and he doesn’t really understand what is going on.  The best he can grasp all of this is to say that he doesn’t like it when his brain falls to sleep and he’s happy to take some medication every day if it stops that yucky feeling.  I’m thankful that he doesn’t really understand all of this.

People have been asking how we are doing and right now, we are okay.  To tell the truth, we’ve all been sick with a lovely 20 day virus, so we all need to get physically healthy before dealing with the emotions of all of this.   I’ve had a couple of hard moments.  One when I picked up a giant bottle of anti-seizure medication and another when I ordered the tiniest medical alert bracelet I could find.  More hard moments will come, as will good moments, silly moments, and sweet moments.

I’ll write more when I’m coughing less, am taking less cold medicine, and when I’ve processed some stuff.

In the meantime, we’re off on another adventure.

 

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EEGs and MRIs and….Bears (?), Oh My!

First off, please forgive me for the blog title.  I’m always horrible with naming my posts and my brain has just given up on trying to be creative.  So, whatever.

A lot has happened since I wrote last about Jake’s seizure.  I don’t love giving half information and since my brain has been too wiped out to give me words, I decided to just wait until the words came back.  And, hey!  Here they are.

If you haven’t read the last two blog posts, Jake had a seizure on October 29th.  He passed out, couldn’t speak, and it was terrible.  An ER visit, regular doctor visit and a few weeks later, we met with our new pediatric neurologist and she said that she suspects he has epilepsy and I was tasked with tracking any additional seizures and getting Jake ready for an MRI and an EEG.

The only way to really confirm an “absent seizure” is to catch Jake when he is having one and wave my hand in his eyes.  If he doesn’t respond, his brain has misfired and he’s checked out entirely.  We have caught 10 of those in the last month.  Out of the blue last week, Jake told me he doesn’t like it when “his brain goes to sleep”.  Since I have had zero ideas for how to explain what is going on other than explaining that he isn’t feeling well and we are trying to figure out why, I knew that description didn’t come from me.  I asked around and nobody else has used that terminology with him.  I asked him what it feels like when his brain goes to sleep and he said it feels like it’s raining inside his head, which he doesn’t like.  Suddenly, all the behavior problems he has been having are starting to make sense.  I would act like a jerk if my brain was raining, too!

The usual trajectory of his seizures are the onset of a headache, then one to two of those spaced out moments, then the headache goes away, and then things get fun.  His behavior has been truly dreadful.  I’ve discovered this is common during the “recovery period” of a seizure, but I have absolutely no idea what to do.  We still can’t tolerate screaming, whining, hitting, and other stunts like that, and it doesn’t really help that I understand why it’s happening.  He gets really irrational, so trying to reason with him is also totally out the window.  It reminds me of my horseback riding days when I could feel my horse was about to buck and saying, “No.  No. You don’t need to do this” and sitting down hard and pulling in the reins and then realizing that I was just going to need to hang on tight and ride it out.

So, yeah.  Life has been strange.  Stranger than normal.  Which is pretty freaking strange on a good day!

In a stroke of luck/miracle (I’m going with miracle), the MRI that had been scheduled for December 30th got bumped up to November 26th.  This was the only time that being on a waiting list actually paid off.

An MRI (for those lucky jerks out there who haven’t had medical problems) is basically an x-ray of your brain.  It shows tumors, bleeds, lesions, and generally stuff being where it isn’t supposed to be.  This is the “tubey thing” test and requires the patient to be totally still in a tiny tube while being bombarded what sounds like a submarine engine.  In case you haven’t met a five year old ever, holding really still for an hour is about as likely as being struck by lightning.  So, Jake had to go under general anesthesia, the thought of which made me say bad things inside my head.  And, on the outside of my head a few times.  I tend to do spectacularly bad (i.e. projectile vomiting and waking up many hours later) with anesthesia and wasn’t anxious to find out if Jake does badly as well.

Since it was Jake go under or not get the test done at all, I couldn’t really chicken out of that, so in we went for the anesthetized MRI.

This is us the night before the MRI.  I’m doing my best not to worry and we are reading a book about doctors.  Jake’s has fallen in love with my surgeon and is now on the path to becoming a “doctor/teacher/fireman that rides in the truck with the lights”.

Jake and me

This is Jake all gowned up and charming the socks off of everyone in sight.

MRi1

We got him as ready as we could, the nurse put numbing gel on the backs of his hands, we got to play with him and cuddle and then it was time to go.  Once we put him on the stiff board with the head restraints, he started to get very upset, but it wasn’t long before the IV was in and he was out.  In about five seconds, they had him wheeled into the room (which we discovered today that he remembers) and the door shut in my face.  For every single thing that little boy has been through, I have been with him and the sight of a “Do Not Enter” sign on a door between me and Jake made me lose it for a second.

It was over fairly quickly and we got to go see him.  I am continually impressed with our medical practice.  The nurse knew all I wanted to do was get my hands on him, but she told me pretty firmly that I needed to not touch him or talk to him until she gave me permission but that she wanted me to get as close as I could so that when he started to stir, I would be right there.

My sweet boy.

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Before too long, he was awake and munching on goldfish crackers.  He really wanted to get up and walk all by himself to the bathroom and I have to confess that I was laughing as I helped my intoxicated five year old walk a straight line to the bathroom.

He did great waking up and since the medication they used to knock him out is what they use to make people not projectile vomit, he had no complications.  In fact, he was bouncing off the walls for the rest of the day and had no interest in “resting quietly” which the doctor assured us would happen.

In just a few hours, I got a call from the nurse at Jacob’s doctor’s office saying that his test was totally normal.  My face, body, and heart breathed a massive sigh of relief and I think I actually got to sleep a normal sleep which hadn’t happened since that first big seizure.

This is one of the pictures we got to take home with us.  Not many five year olds get to take their brain to school for show and tell!

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And, no, the answer to Jake’s problems is NOT that he has a truck in his head.  🙂

We had a pretty great Thanksgiving after that news!

A few days later and we were off to the races again with the EEG.  I’m too lazy to look up what EEG stands for, but the test sort of listens to the brain talk to itself and maps out any irregularities, any strange brain activity, or misfirings that could be causing the seizures.

To get a brain to misfire on command, it has to be stressed out.  Stressing out a five year old brain means letting it only sleep for 4-5 hours the night before.  Which means also stressing out the parents of the brain the night before.  I have a raging cold so Greg was on first watch, while I tried to argue myself to sleep.  That didn’t work out very well and when I got up at 3:45 in the morning to get Jake up, my body informed me in the strongest words possible that I am not a teenager anymore.

Greg said that he has never seen anyone have so much fun being sleep deprived.  He was absolutely right.  Jake did great the whole time.  Maybe he does have what it takes to become a doctor!  This picture was taken at 3:55 in the morning.

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Jake was a pro for the EEG as well.  We got him on the bed, about 30 electrodes mapped out and placed on his head, and then we got started.  The tech had him blow into a pinwheel for three minutes to hyperventilate, then flashed lights into his eyes and then we tried to go to sleep.  The brain behaves differently during all of these stressed out scenarios and the hope is to catch a misfire.  The tech wasn’t supposed to tell us if she found anything, but when I told her that I was actually hoping that we would find something, she told me that she marked a few spots and that we would have some things to talk to the doctor about.

We don’t go back to see her until the 19th and at that point, we will find out results, discuss what we have been seeing with his seizures, and figure out what is next.

I’m hopeful that since there are no tumors, or trucks, in Jake’s brain that the solution could be lengthy but not terrible.  I mostly want answers for why Jake seems to disappear sometimes, why school has been so awful for him, and for a way to get his brain to stop “raining” and falling asleep.

We are definitely “living in interesting times”.  I’d like to try boring times soon.

Let’s face it, though, life with Jake will never be boring.  🙂

minion backpack

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Neurologists and Updates

The last post I wrote was about the scary new thing in our life:  seizures.  After the last few weeks, I’m ready for the scary new thing in our life to be spiders, broccoli, or clowns in my closet.

We saw our newest doctor and Jake’s pediatric neurologist on Friday.  She confirmed that the episode he had last month was indeed a seizure.

She suspects that Jake has epilepsy, but since he hasn’t had another major seizure like that one, we can’t confirm that.  She totally believes me when I say that I still see him space out in ways that would indicate “absent seizures”, which are seizures where the individual doesn’t lose control of their body, but looks totally spaced out.  The difference between a seizure and spacing out (before you self-diagnose yourself and all your co-workers with seizures) is that a person in an absent seizure won’t respond to most kinds of stimulus.

The good news, so far, is that she doesn’t suspect that Jake has any worse kinds of medical problems like a brain tumor or something fun like that.

We will be doing both an EEG, which measures brain waves, and an MRI which takes a picture of the brain.  I will be very happy to see film with nothing else in Jacob’s head besides his funny little brain.

Neither of those tests are scheduled yet and the scheduling team warned me that they are booked pretty solidly up to the end of the year.  I’m taking a deep breath before I politely and firmly tell them to free up some time for us.  We are on the top of both waiting lists right now!

Jake is continuing to feel pretty crappy.  His head hurts him almost daily.  The other night, he was hurting and told me that he wasn’t ever going to get better and that he was scared.  So far, with all of his problems, Jake has been pretty unaware of what is going on.  He knows that therapy isn’t fun, that working on muscle tone really stinks, and that sometimes he has a hard time sitting still, but he hasn’t really understood that those things happen because something is different about his body.  The headaches are pretty concrete for him and it’s been hard for me to watch.

Since Jake is a tremendously smart little kid, he has also figured out that headaches upset me and that if he says he has one, he will most likely get out of whatever activity he doesn’t want to do.  I’m trying to walk that fine line between letting him get away with skipping school or prolonging bedtime because he doesn’t “feel good”.

I’m still worried about him.  While I’m not letting my fear take hold of me and rule my life, I finally realized that I was so exhausted every day after school because I was so horribly tense until I saw his little face and yellow hood after school.   Once I got him in my arms, my body would let go and I spend most afternoons pretty wiped out.  That is getting a  little better, but it is probably going to be a constant for a while.

Things are still very tough at Jake’s school.  I didn’t write about this because I was trying to figure out what and how to say it when he had his seizure.  The short story is that we all agreed that I would stay with Jake until we get the help he needs in the classroom.  Very suddenly, the school decided that a sweeping policy change was going to be made to exclude parents from doing the job that the school should be doing.   Which forced me out of the classroom much sooner than I wanted.  While I agree, on some level with that statement, they are not communicating with me and I am not confident that they are following through on what needs to happen.  I need to know if Jake has a headache, if he starts to act strangely they are supposed to let me know, and he isn’t allowed on any playground equipment.  I’m getting conflicting stories from parents, volunteers, and staff about how Jake is doing and I seem to be shut out of the process.

Let me qualify the above paragraph a bit.  If there was a reason that I knew for sure that I needed to be with Jake at school (like I did for a few days after his seizure) there aren’t bears or tarantulas that could keep me from telling the school, politely, to “shove it” and be  with him.  Just in case you were wondering.

I am absolutely NOT okay with this.  The school has shot themselves in the foot by shutting a parent out who would do anything to help her child.  They are more qualified in some aspects of Jake’s education than I am, but that does not mean that they know him better than I do.  I am going to begin working with a family of special needs advocacy group in Stockton to help me get figured out what is the legal and respectful way of insisting that remain part of the plan for him.

If you pray and want to pray for our family, we could use prayers for peace, wisdom, for me to navigate the school system well, and for finances as the bills are starting to roll in for the procedures.  We will be okay, but I need hospitals to be understanding of a payment plan, rather than thousands of dollars of payments all at the same time.

So, that’s it for now.   I feel like my voice is a little lost right now.  I’m tired.   I’m sure you can understand if this doesn’t feel “me-sh”.

But, hey!  It’s three degrees and snowing in Colorado Springs right now.  It’s 60 and sunny where I’m sitting.  That is a very good thing!

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A Scary New Chapter for Jake

By now, many of you are aware that Jacob had a possible petite mal seizure in class.  I sat down to write it up for his doctor and thought that I would post it here.  I think I’ve reached the end of how many times I can say this out loud.  It is terrifying every time I re-live it, but want you all to be able to hear the story.  If you want to hear the story.  If you don’t want to read it, read the next paragraph and then be done.  You will be glad you did!

Before I go into all the details, I have a bit more story.  I have been helping out in Jake’s classroom every day at 9:o0, during some of their independent table work.   I had decided to not go on Wednesday morning because I had just had a cortisone shot in my foot and I felt pretty terrible.  However, just a few minutes before 9:00, I suddenly found myself in the car, driving to school.  It was almost as if I didn’t have a choice as to what I was doing.  I firmly and totally believe that God wanted me to be with Jacob for what was to come.  There is no other explanation!

This is why He wanted me there.

On October 29th, around 9:15 in the morning, Jacob had what appeared to be some kind of stroke or seizure.

I was sitting at the head of his table, he was to my right.  I was turned to my left, helping one of his classmates when I saw out of the corner of my eye that he went very still.  I turned to him to tell him to start working on his project.

He had a panicked look on his face and after a few seconds, his face went totally slack.  His eyes remained opened.  His jaw fell open, his tongue was pulled back into his mouth, and there was a tremendous amount of saliva pooled in the bottom of his mouth.

I thought he might be about to throw up, so I picked him up and got to the bathroom as quickly as I could.  In the 20 feet from the table to the bathroom, he went totally limp in my arms.  I talked to him and tried to get his attention.  His eyes were still open, but unfocused, the pupils were dilated very widely, and he wasn’t able to meet my eyes.

We were causing a huge scene in his classroom, so I brought him to the office, which is just outside of his classroom.  He started to make moaning sounds, but was unable to speak.  His eyes re-focused and he was able to look into my eyes, but he looked very dazed.  I asked him what his name was.  He was able to open his mouth, but his speech was severely impacted.  His mouth looked as if he had a mouthful of novacaine.  He was able to say his name, but it came out slowly and barely intelligible, the word lasting about three seconds.

He knew who I was and within about a minute, his speech improved dramatically.  In another minute, he regained control of his muscles and was able to sit up by himself, but still leaned back on my shoulder.

His speech remained slightly off for another two minutes, but improved with every word.

The paramedics arrived within another five minutes.  They asked him to hold up his arms, resist pressure on his arms and legs, to put out his tongue and move it from side to side.  He was able to follow all of those instructions with no problems.  The only remaining symptom was a bad headache in the center of his forehead.

Then, he got very emotional and was crying, mostly because he thought that the paramedics were going to give him a shot.  He hates needles!  The paramedics loaded us into the ambulance.  Jacob was still content to rest on me and didn’t fight being strapped in.  Under normal circumstances, he would have resisted this process.

We got to the hospital and he was still somewhat disoriented and very cranky.  Within about an hour, he seemed to come out of his confusion, demanded his lunch, and scarfed it down within a few minutes.  I normally have to fight with him to eat every bite.  Mealtimes can take up to an hour, so it was very unusual for him to eat so quickly.  After he ate, he became the funny and sweet little boy that he is.  His personality totally returned and by the time they released us two hours after our arrival, he was hopping up and down in front of the ER doors.

The initial episode lasted about a minute, with slurring of speech for about four minutes afterwards.  His confusion and crankiness lasted about an hour after that.  At the end of another half an hour, he was totally back to himself.

He has no memory of a few things that happened prior to his seizure, nor any part of his seizure.  He doesn’t remember the ambulance ride.  The only thing he can tell me is that he remembers looking at me and then feeling like he “had glue in his mouth”.  I can only imagine that is how he felt when his mouth wouldn’t work.  I am thankful that he doesn’t remember any more than that.

I know that for sure, two other times, he had what is called an “absent seizure”.  He just kind of isn’t there for a few seconds, has no memory that he was gone, and doesn’t remember anything that happened while he was out.  He snaps back just fine, but headaches seem to precede and follow these episodes.

Other than these episodes, he has been our little Jake.  He has been cranky, funny, sweet, active, and seems to be himself.

We are obviously very concerned and are scheduled to see a pediatric neurologist on Friday.  I am anxious to get some answers.  There are a lot of other behaviors that Jake has that really fit with a mild form of epilepsy.  I hate to say that I hope that he has epilepsy, but it would be so much better than the alternatives.  And, it can be fixed with medication and frequently, children seem to outgrow it.

I have nailed my internet searching fingers to my desk and have not researched one single thing about his symptoms.  I have spoken to two parents with children who have epilepsy and their stories have matched mine and been very encouraging.  I am thankful that other people know this journey, this fear, this watchfulness that I can’t shake.

I am worried, tired, anxious, and have been thrown into a new level of fear that I didn’t know existed.  I can’t help but wake up a few times in the night to check on him.  He is sick of me asking him if he feels okay and has taken to yelling, “I’m fiiiiiiine!” almost every time I say his name.

Whatever our journey, I know we will get through it.

We could use your prayers for strength, peace, answers, and the ability to deal with whatever is coming.

On Facebook, I said that I didn’t want any medical advice.  It was funny to a lot of people, but I really do mean it.  So far, everyone has respected my wishes and I am so grateful for that.  In case you are wondering why I asked for no medical advice, I will tell you the simple story of someone telling me that coffee enemas greatly reduce the side effects of chemotherapy and leave the rest of the thousands of pieces of advice to your imagination.

I will keep everyone updated here on our progress and journey.

I am thankful for so much love and support!

Just in case your heart will feel a little better seeing Jake’s happy little face, here he is from our trip to the Sacramento Zoo on Saturday:

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Everything Changes for Jake

A few weeks ago, I wrote about the struggles that Jake has been having in Kindergarten this year.   If you want to be caught up on our story, read this:  The First Seven Weeks.

The summary of that post is that Jake has been having a really hard time in school.  His previous IEP was written without the understanding of how Jake would behave in a regular school classroom.   He had an hour of speech therapy a week to address his auditory processing problems, but very little other support.  After spending a bit of time in the classroom, I wrote a pretty strong e-mail to the special needs department of the school and that e-mail, along with a few other things, set in motion a new IEP being written.

On Monday of this week, I met with the IEP team, which consisted of myself, his teacher, three of his therapists and the school principal.  We met for an hour and a half and we laid everything out on the table as far as the struggles we have seen in the classroom so far.   I was able to tell them Jake’s entire health and therapy history and catch them up on what has been done for him so far.  They were able to tell me what they have seen, where we are falling short on services for Jake, and what they believe we need to do to help Jake be successful this year.

After being in Jake’s class all day for the third day in a row, I am too wiped out to go into great detail (which is probably good anyway), so this is the summary of what came out of that meeting.

Jake needs help.  He needs someone with him all day and someone who is qualified to be able to help him when he is struggling, frustrated, upset, or just not being able to focus.  Because laws are funny and there are safeguards in place, we aren’t going to be able to get that person, whose job title is a “Para”, in place until January.  So, for now, we are going to be piecing together some help which will include a few other aides and myself to get Jake through his day.

The next 60 days will see us getting lots of things done to re-write the IEP to include a Para.  I will need to get Jake tested and evaluated by his regular doctor and by a psychologist.  There is some concern that there is an attention disorder in addition to the other issues he already has.   Once we get the evaluations and tests done, Jake’s IEP will be re-written and then the school has a certain amount of time to implement the changes.

I’ve always described our journey of therapy as being a maze.  Jake is totally intact somewhere inside of a maze.  My job is to go in the maze, find him, and help him get out as best as possible.  The blood tests and psych evaluation will give me a better picture of how to keep helping him get out of the maze.

Due to the wonders of modern medicine, we’ve already been to see our GP, had lots of blood tests done and everything is normal so far.  We are just waiting on the allergy tests to come back.

While we wait for the tests to be done, I will be going to class every day with Jake.  As soon as we get the other aides schedules worked out, they will begin coming  in to work with him and I will be able to leave for 20-30 minutes at a time.  I will plan on staying at or near the school for the entire morning and early afternoon, but the hands-0n portion of my day will begin to dwindle.  I plan to bring my running shoes and books to read while someone else is with him.  I’m also developing a bit of a plan with the two other Kindergarten teachers to work with the kids who are behind and just need someone to sit and read to them.  I would dearly love to be able to help someone else’s child!

So far, things have been going well.  The day has extended by another hour and twenty minutes, so we are in a time of adjustment with the entire class.  We often forget that these little guys have only been walking around on the earth for five years and are still not really capable of caring for themselves.  We expect so much out of them at such a young age and I keep hoping that whatever alien life form that develops standards for Kindergarteners would back the crap off and let them be kids a while longer.   But, Jake has been doing pretty well, all things considered.  He gets really tired after noon and I spend a lot of the remaining class time holding on to him, restraining him, and desperately trying to run out the clock on the rest of the day.  It will get better once we get used to the longer day.  I’ll be really glad when I am spelled for a while by the other therapists and will have time to take a deep breath and jump back in.  Right now, I am so tired by noon myself that I feel barely capable of holding us both together.

I had a stroke of genius over the break and pulled out his old Benik vest.  I did some alterations on it and he has been wearing it for parts of the day.  I took pictures of his school work so you can see for yourselves how amazing it is when a kid with special needs, who is very bright, feels secure enough to do his work.

This is Jake in his vest:

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This is the level of his classwork without the vest (he should have an entire page of the letter S as well as some pictures):

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This is his work while wearing the vest:

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I was stunned at the difference a little help can be for him.

If you have been following our story at all, you are probably waiting for me to talk about the other moms and the not-quite-bullying that has been going on in the classroom.  I was able to speak to the principal after the IEP meeting and he did confirm that there have been complaints made about Jake.  However, they were so glaringly inaccurate that he said it was obvious to him that the other parents have been trying to stir up trouble.  I am so thankful that he saw through the Mean Moms and understands what is really going on.  The taunting and nastiness towards Jake from the other kids has greatly decreased since I’ve been going every day.  A few of the stinkier little girls even cheered for Jake when he did something well.  I know that being a kind, rational, even-tempered presence in the classroom has gone a long way to getting Jake the help he needs.

I think I cemented my bad-ass mother status with the administration today when I caught the gopher that bit a kid on the play yard.  Of course, the little boy had stuck his hand down a gopher hole and the gopher was terrified, but I knew that it would need to be tested for gross things, so I threw my coat on top of it and put it in a box.  I had so many people come up to me today and say, “Were YOU the one the caught the gopher?”  It made me smile and I am sure it will help them see me as more than the mother of the kid who is having trouble

Even though our train got seriously derailed for a while, we are picking up the pieces, building a new track, and are in the process of putting Jake back where he needs to be. I’m hopeful and encouraged which feels pretty great.

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