Tuesday, January 29, 2008

It's Not In The Numbers

Today we went to see Kid's neurologist for our check-up. We've still got another 9 months to go before they even consider weaning her off the anti-seizure medication so not much was going to be revealed at this appointment. She hasn't had any seizures, she doing well, her behavior is no longer a problem, she's sleeping well. So Mr F opted out of this appointment since he's taking off next week for her eye surgery (yeah it is nothing but fun times around here). The problem with that is that schlepping both kids to the hospital for the appointment and dealing with the overflowing parking structure and the slow elevators and everything is annoying at best and often times just a little stressful. We don't even live 2 miles away and yet I have to get them all in the car about 45 minutes ahead of time to account for all that can happen between our door and the clinic's.

My worst fears were not realized and I managed to pull it all together and with a bit of nagging we arrived just on time (no not 15 minutes early as we were requested to do). Baby tolerated her stroller for a bit and then explored the room. Fortunately they had a scholastic book on arctic explorers which might as well have been hand picked by Kid and she was happily listening while Baby crawled under some chairs to investigate dangerous chords and whatnot. Really it wasn't so bad. Baby never once tried to flee the room.

The doctor is a super nice engaging older man. He remembers (or takes VERY detailed notes to help him remember) minute details of your family... looked at Baby and said "The last time I saw you you must have been four and half months old." umm... yeah... to. the. day. Seriously folks. Anyway I enjoy that in him. He engaged Kid in some ball throwing and jumping and asked her some basic questions. Then we talked about what comes next. I'm pretty well read on Epilepsy and so I'm well acquainted with the numbers and how things will be.

Having said that I still always have some deep down secret desire to arrive at the appointments and have some unexplained turn of events discovered that result in a new diagnosis or NO diagnosis. When that doesn't in fact happen, as it inevitable won't, and we begin talking about the reality of the situation it is hard not to leave a bit depressed. And the funk can kind of hang around for a bit and the funk can turn into grief and at its worst into an inner hysteria that makes me fear for my daughter's life and even start to mourn it.

In November we will start to slowly wean Kid off of her medication. During those few months and then the following six is when she would most likely have a repeat seizure. If she doesn't then she will no longer have epilepsy and it will be assumed that she has outgrown it. 70% of children do outgrow it. But obviously 30% do not and they may seize during the weaning or in the 6 months following or they may seize seemingly out of the blue 5 years later. You'll never know. You. Will. Never. Know. You can't try to feel what that would be like but I suspect if you are not the parent of a sick kid in remission of something you probably can't. Many people will look at those numbers and think those are good odds. Well when your child only has a 2% chance of having Epilepsy in the first place and then manages to have the most uncommon form numbers no longer mean much or offer much consolation. The reality is for every 7 kids who will successfully outgrow it 3 will not. And even the parents of those lucky 7 will still never know if there world will suddenly come crashing down a few years down the road. It's not like you get a certificate that guarantees your recovery.

The main concern I have at this point is that Kid will be most likely to have a seizure between November and August of next year... when she would be going to school. The school does not have a full-time nurse and the neurologist did make it clear that that is by FAR the preferred situation. So I'm not sure she'll be going to school. I have a lot of mixed emotions about this and will need to take some time to really process what I think will be best. For now I'm still going to attend the Kindergarten roundups and open houses and may look into the private schools and see what their onsite medical coverage is like. But in the end I don't know if I can live through the amount of worry I'd have EVERY DAY. I'm not sure it would even be tolerable for me to do so.

26 comments:

Nutmeg said...

Honestly... this makes me feel nauseous just thinking about the stress and anxiety.

Feener said...

i am so sorry you have to go through this, and that kid has to. I do hope that you find some way to get through it with some peace. Oh, i can only imagine how hard it is.

Marie said...

Ugh..I can't even imagine how stressful this must be. Especially the always waiting for something that might not ever happen. Maybe you'll find a small class for her with a full-time nurse so that there is lots of individual attention...or maybe part-time k? (we have it here..not sure about other places) Or maybe just keep her close for another year and see what happens. You can always start her in first grade if she's fine...
((hugs))

Mrs. Furious said...

Thanks for the empathy guys.

I knew the weaning time was a very vulnerable time for the brain but I didn't realize that that extended to the following six months. I was thinking we might wean all little early over summer and then we'd be good to go for the school year.

I might send to her to Kindergarten for the first semester and then keep her home in the spring... who knows. Also it is possible the private schools have a full time nurse.

But at least it is just Kindergarten. It's not like she has been in a school with established relationships and then I pull her out for a year.

And yes we have 1/2 day K... but I'm not sure that really helps my anxiety much.

We also have a HUGE homeschooling community and resources here so that is a definite option that I'll be looking into. I want her to be safe but I also want her to be happy and she likes the socialization she gets a preschool a few hours a week.

emmyjw said...

We go to our homeschool co-op all day Wednesdays,the kids love it.I work in the nursery all day so I'm there if they need me.They have made good friends that they do things with outside of co-op and the kids are all great with really involved parents.I have met some homeschool people from AAA,one woman taught the elementary creative writing class for a year, and they have all been very nice.I hope you have peace about whatever you decide and I also hope everything goes sp smoothly when you do wean her that there won't be any worry in your mind.You can email me any time(if your email is ever working again;)) if you have questions at: emilyjwilliams74@sbcglobal.net
That is totally the worst parking situation ever.I was really glad when Ella could do all of her appointments here. Prayers going up for you and kid(Mr F too :) ).

emmyjw said...

I meant AA as in Ann Arbor,not triple a man I suck at typing...

Amy said...

Bottom line you have to do what you feel is best for her. I for one would be a basket case sending her to a school without a nurse on-site. Totally get that. I think this circumstance would call for homeschooling, and the thing is, if everything works out medically, you're not talking several years but like 7-8 school months.

Cara said...

my thoughts are with you and your family with this. I am so sorry you have to go through this, and I wish I had the cure all for your baby.

Julie said...

This is huge. To have all this stress, but also not want to put it back on Kid. You don't want her to be all stressed out.

Good luck with the eye surgery.

Homeschooling could be a really good option. I know where I live there is a big social network for the homeschoolers. But you have to make it happen...unlike public or private school where you drop off and you know they are getting some socialization in there.

I have a great friend who's child has juvenile diabetes. Our school does have 2 full time nurses(I'm sorry...I wish I could send one to your school) and she still opted to have him stay in the kindergarten program at his preschool since he would get more attention. He started first grade and did fine.

Whatever you choose to do will be the best choice...such worries though.

Shirls said...

sorry to hear.. I've found that with hubby's deadly allergies it is best to focus on the good stuff and let the not so good stuff slide off the table, way the frig easier said than done at times :0)

Mrs. Furious said...

Thanks ladies!

I don't know why but I kind of assumed people would judge me for wanting to keep her home. I'm happy that is not the case :)

Mr Furious said...

It's tough. We feel like we end up on the wrong side of the odds with Kid's health every damn time.

Rare eye/vision issues? Check.

Rare chance of having epilepsy? Check

That epilepsy being a serious medical emergency situation? Check.

Eye surgery unsuccessful and needs to be repeated? Cjeck.

Starts to feel like your living the worst-case scenario all the time, and it gets you down.

My family history being what it is (completely repressed), I am able to suppress the anxiety and get through the day, but that often just makes it worse for Mrs F...

Thankfully for all concerned, Kid is a freaking bad-ass trooper of a kid and takes it all in stride.

Mr Furious said...

I was thinking this morning in the shower that maybe you can con the AAPS into giving you a job at the school similar to your NYC gig—social worker for the kids...

I can take Baby to work and get her into the Children's Center?

Mr Furious said...

Side note: For all the tax money we pour into this school system how the fuck do they not have a nurse at each school?

Is this common now? WTF?

Mrs. Furious said...

Shirls,
what is your husband allergic to?



Mr F,
"I am able to suppress the anxiety and get through the day, but that often just makes it worse for Mrs F.."
ummm... yeah.

and I'm not putting Baby in daycare!!... I'd rather just keep Kid home for the year.

Mrs. Furious said...

Mr F,
I assume they have a couple of nurses that rotate through the district. I'm wondering if Bryant the school with all the full-time K and preschool programs has one onsite all the time. Unfortunately that school is the worst one in the district.

Meagan B. said...

what?!?! no nurse on site? the rate of allergies/asthsma in children is skyrocketing. that school is nuts. start a campaign. gather up the allergic kids' mothers and rally. get the nurse!

if no nurse, homeschooling it is.

Shirls said...

fyi - I've never been in a school that had a nurse, so the whole idea is fascinating to me

hubby's allergies: mushrooms = instant death in a fungus, milk, strawberries, blueberries, banana, lemon, grapes, chocolate (Yikes!) fresh water fish, salt water fish and shell fish

and the annoying but not deadly: grass, all trees, cats (we have two but they don't bug him) dogs, horses and my fave one.. camels

Mrs. Furious said...

Meg,
isn't that weird. And AA is (I think) the #5 school district in the nation so you'd think we might be doing something to earn that... obviously not in medical care! I think I might find a private school with a staff nurse DCD always had one.


Shirls,
that's a lot!

Shirls said...

honestly that is the coles notes version of the list, the things that we really need to be careful of, he has others not so deadly

P.O.M. said...

Damn. That is a lot of decisions for you to make soon. I wish the best for you and Kid.

And I don't think anyone would "judge" you for any decision you make as a parent. It's sooo obvious that Kid's interest is what you care about. You're a great mom.

Kid Art said...

Sorry I could not comment sooner; work has been crazy. I just wanted to say how sorry I am that you all have to go through this, and if anyone were to judge you for deciding to keep your daughter out of school, I say f- them.

And I can't believe your school doesn't have a nurse onsite all the time. ???!

I also wanted to mention that my mom homeschooled some of my younger brothers for several years, and then the very youngest ended up deciding to go to public high school. Between all of us we ran the gamut from public to private to homeschool - and everyone turned out just fine (and have all graduated from college). Even if you kept your daughter home for a year or 2, you could still put her back in school at some point if you felt a change would benefit her.

If you ever want to chat about homeschooling, email anytime: medesj at cox dot net.

I wish you guys all the best -

Emily

Mrs. Furious said...

Emily,
Oh thanks so much. I'm under the impression that it is actually not atypical for public school districts to have roaming school nurses. I was mostly in private schools and we always had one... but the expense of private school is more than we can technically afford and yet we make too much to qualify for financial aid.

michelline said...

I don't know why but I kind of assumed people would judge me for wanting to keep her home. I'm happy that is not the case :)

Absolutely not! I can't imagine being in your shoes. What a tough decision to have to make. Kid seems a very happy little girl, why change things up? Home schooling for a year or even two won't make her less happy. Sounds like you're doing your homework, so she's going to have the socialization as well as the learning aspects.

Just an idea, but have you ever considered being the Room Mother at whatever elementary school Kid would go to if she did use the school system? That might be an option to think about, as then you would be there everyday (or most every day) and the teacher could get some much needed help. Of course, Baby would probably have to do some sort of day care though, so that might not be an option you would consider. Just thought I would throw it out there as it might solve both issues. (kid in school and her having supervision you could trust)

michelline said...

Side note: For all the tax money we pour into this school system how the fuck do they not have a nurse at each school?

Is this common now? WTF?


I know our school system has rotating nurses who share 3 or 4 schools. It's quite irritating for us parents with kids who just have the normal colds, stomach aches, etc. I can't imagine what parents feel with kids who are really sick.

Mrs. Furious said...

Michelline,

oops sorry I missed these yesterday!

yeah I thought about the room mother but it isn't worth it to me to have Baby in daycare... nor could we afford to do that anyway.

I think I might enroll her through Christmas and (during which time she'd only just begun the weaning) and then keep her home by next fall she should be all set. If she has a seizure she'd be back on the meds and if not then that is as good as we're gonna a get.

I don't know why but I thought more people would think "you can't control life she should go to school." but that is kind of my father's voice in my head.

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