Why… How… mostly Why…

I’ve been quiet… too quiet… and I feel very guilty for that.  It’s been a long hard few months and I need to get back to finding myself.

This week, Adam has an epilepsy doctor appointment.  He has been seizure free for 2 1/2 months.  I face September with a sinking feeling… he has been seizing about once every three months… and we are coming up on that now.  I worry.  I can’t do anything about it… but I worry… what if he seizes when he’s on the bus between school and where I pick him up…

Amandya has gotten back to stable.  The absence seizures that were surrounding her gastroparesis treatment have gone away and she is back to being seizure free.  I worry.

Yesterday we were in Walgreens waiting for my Flu shot and my Hepatitis B shot.  While we were there, a woman about my age was there trying to get her first prescription of Keppra XR.  Turns out that Pennsylvania isn’t the only place there is some kind of Keppra shortage.  Go figure.  We got to talking and I think maybe I made her feel a little less like a freak.  I hope so.

She was just diagnosed.    She’s learning the vocabulary of her new normal and reaching out for support.  I hated to disillusion her… our town doesn’t have much in the way of epilepsy support.  It makes me sad.  Given she can’t drive, I didn’t really have the heart to tell her that if she wants support, she should probably suck it up and get someone to drive her 90 minutes south and hope like heck they have something she can sit in on there.

I want to help… I want desperately to help.  But I feel so much like I’m jousting at windmills and only the wind is on my side.

A Whole New Chapter Begins

It isn’t like I thought life would get boring (or even normal or anything) but I could have lived with the seeing out of 2011 being quieter.

Tuesday we had Amandya’s neurologist appointment.  Dr Reardon assured here that he would be good with her seeing him until she is into her early 20s.  That made both of us go whew.  He also said that he would do an EEG (sleep deprived) that is coming up tomorrow at noon to see if she can start to be weaned off of her Keppra.  It is a good thing.

Wednesday she had her psychologist appointment and everything went well.

Wednesday night I got a phone call on the house phone from Adam telling me that one of his bud’s from high school moved back into town and he was going to hang with him for a while.  He might decide to stay the night and play music and video games.  I made sure I told him to call to let us know for sure if he was staying and he said yeah, sure, no problems.  He knows we worry and would much rather lock the door if he isn’t going to be coming home.

An hour later I got a call on my cell phone.  It was a very polite, very rattled friend from high school telling me that Adam had a seizure.  Actually, he said Adam passed out.  I went fishing and figured out that what poor Brenden was describing wasn’t passed out, it was seized.

His eyes were open and fixed
He was unresponsive
His arms were flexed and jerking.

I calmed poor Brenden down (all the while realizing that I’m supposed to be freaking out at this point.  I’m supposed to.  Normal people would be) and told him he did good and that Adam would be okay.  He said that he was going to give Adam a drink of some pop (Manzanita… Mexican Apple Soda) and bring him home in a bit when he was back to himself some more.  He didn’t end up waiting till he got back to himself.  Nearly, not quite.

Twenty minutes later (he lives a couple blocks away) Adam was standing in my bedroom doorway, lips absolutely white, eyes not quite focused.  He was semi coherent and complaining of being tired and having a headache.  He fell asleep on the couch to the Christmas tree lights.  He slept two hours or so and then started talking.

He remembers feeling pressure on his forehead.  He remembers feeling like he was getting one of his shivers/twitches and the next thing he remembers was his headache and Brenden trying to help him come around.

Since then he has had the feeling like something isn’t right.  Thursday he couldn’t remember where he was when he was sitting in the car with dad at the light at Walmart.  This is somewhere he hangs with his other friend and has walked many times on his own.  He couldn’t figure out what the ball park was when he passed it on the way home (again, something he passed all the time) and the field (easement near our house) looked all wrong and too empty (it hasn’t changed in months and months and then it is only that the grass is taller when there is normal rain).  He’s said that the back yard doesn’t look right.  The dog doesn’t look right.  Things are just kind of about a step out of time wrong.  Kind of like the polar opposite of DejaVu.  Hope (lady from Facebook) said it sounded like Jamais vu and it really does.

This had to happen when everyone is going on vacation for Christmas/New Years.  No doctors are any where around.  Eeesh.

So we are going to try making him an appointment with Amandya’s neuro (his old neuro) when we go in tomorrow for her EEG.  I won’t get lucky enough to get him in this year, but I guess that is to be expected.

Looking at his shiver/twitches (the ones that start at the base of his skull and sometimes make his face twitch… sometimes make both arms flex and twitch) I’m starting to think more and more that they are Myoclonus seizures.  He has brushed them off for the longest time, and said that as long as they aren’t affecting his day to day life adversely he didn’t want to see anyone.  Now he’s willing to see the doctor.

I don’t know if he will brush it off as nothing to be concerned with, or not.  I’m hoping he takes everything into account and really listens when it comes time to take Adam in.  And I hope we don’t have another tonic clonic event no matter how short (Brenden claims it was seconds).

It looks like December 21, 2011 is a lot like January 21, 2010… another day like no other.

Everyone Needs a Little Support

Round Rock is a city of 105,412 (roughly, as of 2009)
Georgetown has 50,885
Our local support group said that all three of the families who come to the local meetings (local as in 35 miles away) are pretty locked into their group.  that is wonderful.  they found a place that fits…
okay.. but if you do the math, I’m pretty sure that there are a few more people in the area who MIGHT actually have family members who have epilepsy or who have epilepsy in their family… a few more than the three people who are tied to the support group 35 miles away.  I understand that a group that has the support of the really big fancy hospital is great and that people from MILES away come there… but with gas back to nearly $3 a gallon and time more and more precious to some of us who would rather spend the time with our peeps rather than commuting to a place where peeps meet… I would think that maybe a closer alternative might be welcome.
Did you know that epilepsy isn’t picky about who it affects.  There are actually people who don’t have access to reliable transportation to get them to the Children’s Hospital and back once a month even if it means meeting with people who understand and who can relate.  Even if it means Pizza and Coffee and Pop.  I make the drive every blessed day to work and back and I don’t WANT to turn around after I go home to pick up my daughter (who is the most effected by seizures since she is the one who has epilepsy) and drive the whole way back into town to meet with people no matter how understanding those people are… no matter the number of impressive experts they have (duh… they are AT the hospital) willing to talk.
Frustrated?  yeah, just a little.
So here I am.
I know that I can not create a 5k single handed… I have found entirely too many roadblocks with that.  And as the economy gets worse, fewer people are willing to cough up money to help.  Maybe i will be able to help with the 5k that they might possibly maybe be planning for may not too far away.  Which is good and which I look forward to… to being in or helping with or whatever I can do to make epilepsy more understood.
In the mean time… I am here, frustrated because people don’t get it… don’t understand… don’t realize…
So… here I am… looking for venues for meetings. And I’m looking for sponsors to help with the snacks… and speakers…
I am going to find a way to give local people who can’t get to the established meetings an alternative… a way to meet with people who share their concerns.  A way to feel like they matter too.

National Novel Writing Month

Okay… as I sit here stalling… no, not me… as I sit here contemplating life… yeah, that sounds better… yeah, yeah, let’s go with that… I realize that it is coming up on NaNoWriMo again (November) and this year I think I totally have a wonderful idea.

I was toying with writing a novel about my farmville town called Kellyville that I keep trying to write about… but I’ve decided that I’m going to use this month to pull together the book I have threatened to write and have yet to get my butt in gear on.

What is it you ask?

Well… it is based not entirely too loosely on the life of a teenager (and family thereof) with epilepsy.  I’m hoping to do it with the help of some wonderful people I’ve met on facebook and who are/have/will be going through the same things that we are and who are at different stages of their own journeys.

I feel like I’m being poked really hard in the back of the head because NaNoWriMo is in November and National Epilepsy Awareness Month and I have a shiny new PubIt account on bn.com where (if I can actually pull this all off) I can publish it in e-book format and donate the profits to further epilepsy awareness.

So here I go… I may regret this… I may wish I had poked myself in the eye with a pencil before I’m done… but…

A Day Like No Other will now be a book title as well… wish me luck and if you have anything you want to have included as a part of the book… please let me know.  I want this to be as far reaching and as informative as it can be… we need to have people understand.

 

Lulled into a False Sense of Security…

Day 2…

Sigh.

Well… I have to admit… I thought that we had gotten the mix “right” and that we had control over the seizures.  It had been 68 days.  Until Wednesday.  Until I got the phone call at work that Amandya is seizing.  Crap.

The tonic-clonic part was probably, from the description, the worst she’s had yet.  Usually it is thrashing and her jaws clench and unclench.  This time, it was curled into a ball and jaws clenched tightly. The complex partial seems to not have been AS severe, and the aftermath was less severe than normal, too.  She didn’t throw up, the migraine didn’t get quite as bad and the light sensitivity wasn’t as severe (although, she did ask to have a blanket put over the window) and she didn’t sleep more than half an hour or so after the seizure….

On the up side… Theresa, the nurse for the neurologist, was fabulous with me and we didn’t have to up the overall dose (just add in an extra on Wednesday to make sure if anything was weirdly up that we got extra meds in to stave it off).

Maybe it was a breakthrough seizure.  We might not actually have the setback that we assumed it was.

I was impressed with how she reacted to this one… she didn’t get angry… she didn’t freak out… she just… went back to reading.  My kid who doesn’t like to read has suddenly decided that she has found a book that she likes and she is devouring it.  She showed me last night that she was “only” on page 100 something…. and I thought back to the Pre-AP classes of last year and reminded her that she didn’t really read 100 pages and get anything out of it all year last year.

She has grown so much the last few months… it has been wonderful to watch.

She has made some hard decisions the last week or so.  Ones that she has spent an inordinate amount of time weighing and considering and thinking about… ones that she arrived at the conclusions all on her own.  I respect her decisions.  I respect what she has done and decided, not because the decisions were right or wrong, but because she weighed all of the pros and cons and made her own decisions.. not angry… not frustrated… just decisions.

Watching her… I don’t think it was actually worth developing epilepsy to grow, but the growth has done her a lot of good.

Now… to try to get back to 68 more days…

Latest Trip to the Neurologist

Well… it is that time again… time to go visit the neurologist…

I dreaded this trip… but it was better than I anticipated… and harder than I planned.

I got a piece of paper that declares that it is Partial Complex Seizures with Secondary Generalized Tonic Clonic epilepsy.

Dr and I had a heart to heart about calling in on the off hours.  We came to an understanding that, no matter who is on call, if I have to call the on call doctor, the following business day, I will call the office and either talk to Theresa (the nurse) or leave a message for her with everything that we discussed during the off hours calls.

We also increased the keppra to 1000 mg twice a day, coupled with a B6 pill at the same time to help mitigate the side effects… and maybe help decrease the chance of seizures.

And, we are 37 days out from the last seizure and no sign of the next breakthrough seizure.

Wow… okay… so… we are looking promising.  Deep breath…

I’m feeling way more relaxed right now than I have been about all of this in quite a while… I have no doubt that I will, at some time, get kicked back down to reality… but… right now I am feeling pretty good.

And we start again…

It has been a somewhat crappy week or so for me (not in general… I’ve just been feeling particularly sorry for myself lately and it has been giving me Eeyore’s little black rain cloud… nothing that is too terribly horrible for the rest of the world… just my own personal crappy mood.

Today was the b!&$% slap in the face to bring me back to my senses.  And it did.  Nuff said.

I have been feeling particularly crappy because I have been feeling a lot like I’ve been letting people down… not being what they need me to be… in general… and that has started my “I feel like a failure” mood.

Add to that the fact that I have had the distinct feeling that no one is willing to even talk to me about fund raising right now (yeah, I KNOW it is so not true… but it has been that little black rain cloud kind of feeling) and raising awareness of epilepsy…

Add in the semi-complacency of not having any majorly grande-mal seizures and and having a life that started to try to approach normalcy… Life came back and woke me up to what matters most.

It was SAT day.  Skinny butt did his 5 hours at the SAT test and thinks he did well.  I have no doubt he did.  These tests he actually doesn’t do too badly on.  And he kicked butt on the PSATs so I don’t figure he has a care in the world on this one.

Lunch was Hoody’s Subs.  They are really good.  I got a saute’d veggie one…

When we got home… I hollered up to Amandya to come get her salad… She made it half way across the loft before she seized.  Adam heard her and ran to help.  Pushed the coffee table out of the way… I held her until the seizure itself ended… I held her while the aftermath worked its way through… I smoothed her hair while she thought she was 13 and while she thought she was 14… I held her hand and her head when she realized that it happened again and she cried.

It’s not fair… And I know that this isn’t something that a booboo bunny or kisses can make go away… I know it isn’t something I can fix.  But I feel like such a failure as a mother right now… no it isn’t rational… no it isn’t logical… but it is what it is.

I sat in the office while I waited for the doctor to call me back and cried and cried because I can’t fix this for her.  I can hold her while she goes through it all but I can’t fix it.  I can be her advocate (and if nothing else… this put the steel back in my spine to make a difference for Amandya and for all of the Amandya’s out there who are dealing with all of this or anything like this…

I can help her tie a knot and hold on… I can hold on to her and hold on for her and help her to get through the NEXT six months (we start counting again) and help her to find a way to realize that epilepsy doesn’t define who she is… she is not the condition.  It is a part of her, but so is being the little squirrel who was climbing the dentist’s apple tree at 2 and the girl who eeps when she sees chip and dale… and the girl who is trying to deal with all of this “difference” while all she wants to do as a teenager is to fit in…

SO…

A Day Like No Other… the name of the non-profit

Monday… I go back to reaching out to everyone I can.

This afternoon… we go find out if Kepra ER comes in 250 mg tablets and we start on the next set of waiting to see what the future holds.

Well, Here I am

I decided that separate my journey through trying to get ME well and healthy (figmentoffitness.wordpress.com) from trying to help my daughter through her journey into dealing with epilepsy.

How did we get here?

January 26th 2010 she had her first episode.  It was after school.  She was found (still don’t know how she was found or by whom or who turned her in to the school police guy) in the parking lot unconscious.  The EMTs said she was awake and alert when they called me on her cell phone and they were transferring her to the ER.  The ER said everyone gets one get out of jail free card and this was hers.  They wouldn’t medicate, they did a CAT scan, blood work and urine analysis… and sent her home.  Follow up with PCP the next day (which I did).  They sent her to neurologist (who I was totally unimpressed with when DS had to go to him) who said it was probably just a fainting spell… they did an EKG and scheduled an EEG for the following month (March, by this time).

Time passed… 

Sunday February 21, 2010… 

she was sitting on the steps talking to DS.  He came to find me… told me he wanted me to see if she was just messing with him or if something was really wrong.  By the time we got from one side of the house (living room) to the other (front door by steps) she was no longer on the second step up, she was on the floor, arms and legs stiff and flailing, face contorted, chewing and smiling… eyes rolled up into her head, drooling on the floor.

turns out the January one probably wasn’t just passing out.

She started to answer questions… when she did she told me she was 13 (she’s really 15) and in 8th grade (she’s in 10th).  Into the car and hurry off to the ER.  They put her in a room and she started to come around.  They called her neurologist… who said follow up next day to schedule an EEG and sent her home.

We got to the car and made it 1.5 miles to the stop light and she seized again.  Same look and feel as the first one…. or I guess the second one… 

back to the ER… where they put her back in the same room she was in before (still dirty) took chest x-rays and transferred her to children’s hospital.