This is what this documentary is about – one family’s journey in trying to find the proper diagnosis and treatment for their child.   I can relate to this as a parent whose child has no diagnosis, not even a fuzzy one, and no guide to proper treatment.  You flail about, try your best and hope something works.

Austic-Like:Graham’s Story

This is one of the not-so-fun parts of not having a diagnosis.  You don’t know what will happen next.  I know that with some diagnoses, they can’t give you a lot of information.  But with Maura, we have none.  No case studies warning us that she might develop seizures.  No other kids to let us know just how far she will progress or if she’ll develop other medical issues.  It’s a constant high and low – more highs than lows.  Highs come when she does something new or we can bump up our goals for her.  Lows are when you discover that bending her the wrong way can cause a horrible charlie horse. 

This past week has once again brought out my need to try to find a diagnosis.  We’ve basically gone through all the doctors we can go through here.  So now I’m eyeing specialists at the Cleveland Clinic, conveniently located about three hours away.  I don’t expect answers, but at least I know I’ve tried.  And who knows, maybe someday, my dream of being on “Mystery Diagnosis” will come true!

Wait – why “Mystery Diagnosis” you ask?  Because to be on that show means we finally got an answer.

Still a little bit of a temperature (99.8 never looked so good to me!) But otherwise, she’s been happy and eating and not having a seizure.  She’s not 100%, but she’s getting there. 

Meanwhile, Miriam is a stuffed up mess of unhappy girl.  She was supposed to have a playdate at her friend’s house today.  That was canceled.  She has spent the day laying on the couch, blowing her nose and watching tv. 

My kids are not having the Spring Break I envisioned for them.  We were supposed to go to the movies and go to Greenfield Village or the zoo during this beautiful weather.  I definitely wasn’t supposed to spend my days going back and forth to get different medicines (today’s meds – Robitussin chewables for the stuffy girl.)  At the same time, I know it could be worse, so I’m very grateful it all hasn’t been as bad as it could have been.   How’s that for happy perky glass half-full?

One day a few weeks ago, the special ed director said something that struck me as funny.  She was talking about how sometimes, Maura’s daily schedule might change because of things like assemblies at school, and how Maura wouldn’t want to miss out on an assembly.

My retort was ”Really, I’m not sure Maura would realize she was missing out on anything.  And it would depend on the assembly.  Let’s face it, she doesn’t need to go to an assembly about saying “No!” to drugs.  She DOES take drugs!  We love how drugs affect her!”

Yes, another warped point of view from the weird world of the special needs parent. Yea Drugs!

And now we can add Easter 2010 to our list. 

As noted in my previous post, Maura’s been sick.  She’s been combining all sorts of things together to confuse us.  Saturday, she seemed to perk up, got checked out by the doctor, noted that she indeed had an ear infection, got a prescription for it, all seemed to be on the mend.

And then she threw up Saturday night and her temperature started going up. 

We called the on-call nurse number, which for the first time was quite a disappointment.  I didn’t really learn anything new and was told I shouldn’t worry about the fever until it hit 105 (mind you, it had gotten up to 104.6 the night before.)  We did take the advice of switching from Motrin to Tylenol, as Tylenol is supposed to be gentler on the stomach, but the nurse surmised that Maura must have a stomach bug on top of the ear infection, and to treat all as such.  My mom instinct didn’t feel this was right.

All Saturday night, she ran a temperature of 103.6 .  I know this because Maura tossed and turned half the night and kept waking me up.  Since I was up already…anyway, Sunday morning rolls around and we’re both exhausted.  Josh took the older three to Easter Mass.  I missed it for the first time in my life.  Seriously, I even went to Easter Sunday mass after having Collin on Good Friday (we were extremely late, but we got there!)

After napping in the morning and some more Tylenol, Maura seemed better.  I did read the antibiotic sheet, where it stated that a side effect was vomiting. Since Maura seemed to have perked up, I thought we could hold off on the new medicine, then call the doctor on Monday and ask for a different brand.  Maura had other ideas though.

Maura was sitting near me in the afternoon, and I noticed she was looking a bit peaked.  I called her over and asked her if she wanted to cuddle on the couch and watch some cartoons.  She said “Yes”, but in a pathetic little voice.  I asked if she was okay, and she put her hand across her forehead and said “My head.”  I said “Oh, do you have a booboo on your head?”  She said “My head” again, still holding it. I wrapped my arms around her to give her a hug and her head suddenly lolled back and her eyes rolled backwards. 

Crap.

Yep, another partial seizure.  I pulled her into my arms, and her legs stuck straight out for a few seconds, then they relaxed.  Josh asked her if she was okay, and she said something, but it didn’t make sense.  I carried her over to the couch, and she stuck her thumb in her mouth and went right to sleep.  Afterwards, the fever started creeping up again to 102.6.  Super.  We decided we had had enough, I would take her to the ER and have her checked out, if only for our peace of mind.

Maura was quite the trooper, despite really not liking being there and having to get an IV.  They gave her anti-nausea medication and more Tylenol, then gave her some fluids and an IV antibiotic.  They also ran some labs and called her doctors to be safe.  I have decided Maura’s neurologist must have been the most popular guy at med school, because every doctor we meet seems to know him from there.  Luckily, they also say “Oh, isn’t he a great guy?” 

The diagnosis – the fever, caused by the ear infection (which was worse yesterday than the day before), was the main culprit.  The doctor was concerned that it was running over 103 – contrary to what the on-call nurse thought.  The doctor really didn’t like that it was hitting 104.  But the fever and infection was allowing breakthrough seizures, which is why they weren’t as bad as others Maura has had in the past.  The fever was also probably the reason why she threw up.  And since she was throwing up, medicine wasn’t staying down, which meant it couldn’t fight the infection and fever, causing a vicious circle.  The hope was that the IV meds would give a good start in kicking this virus out of her, so that she’d be able to tolerate the meds we have at home.

Meanwhile, during all this, Josh texts me that Miriam is running a temperature of 102.  Great.  I told the doctor, who told me that news was actually reassuring, that this was all just a normal virus and not something worse.

After all that, Maura was exhausted.  We went home, watched some cartoons, and soon she was snoring like a cute little freight train next to me in bed.  At 3 am, I woke up and found her basically chewing – it was weird.  I first checked to make sure she wasn’t chewing her tongue off or anything, then got her to stop it.  But then I noticed that she felt hotter.  Took her temperature – 104.4 .  Crap.  Got her some more Tylenol, wiped her down with a wet washcloth while she slept, and waited to make sure the fever went down.  It did, but this morning, she was at 102.6 still.  So we gave her more Tylenol. 

Hopefully if we can keep the fever at bay, we can keep her from having another seizure.  We were given a prescription for extra seizure medication to take while she has a fever to use at our discretion.  I’m kind of hoping we don’t need to use it. 

Right now, at this moment, Maura is playing happily, and has eaten a banana (first food since Saturday.)  She was giggling hysterically at Sean earlier.  We’re hoping this is a good sign.  However, she seemed to be on the mend at this time the past two days only to go downhill later in the afternoon.  I’m praying that this time it’s really real.  I could use the sleep!

In the meantime, it’s Collin’s birthday – poor kid.  I had plans for him.  Plans that required being healthy and leaving the house. At least he’s content in playing video games all day (a rare treat around here.)  Me?  I’m spending this beautiful spring day washing sheets and disinfecting the girls room with some spray I’m making with just water and lavender oil.  Lavender has disinfecting properties - and it will smell lovely too!

Actually, it started off fine for her.  She played.  She went grocery shopping with me.  She played some more. 

Come afternoon, Miriam was on the front porch, coloring with chalk on the porch.  Maura was watching her from inside, standing at the front storm door.  I was in the living room when I heard Collin say “Whoa!  Maura, are you okay?”  There was a quiet pause, then Collin said “Mom!  Maura fell down!”  I came out of the living room, Collin’s looking confused and apologetic as Maura laid on the floor.  I went over to her, and her eyes were open a bit.  I asked her if she was okay, and she garbled something and her foot twitched a little.  So I pulled her up on  my lap to cuddle while she stared off in space a little but slowly came around.  After five minutes, she was able to stand up on her own and we went into the living room to snuggle on the couch while I interrogated Collin and Miriam about what happened.

I already guess that she’d had a seizure.  Collin told me how she was standing at the door and suddenly fell sideways into the door frame.  He went and grabbed her and tried to help her stand back up (not realizing what was going on) and she then jerked and fell backwards, hitting her head on the interior door.  I will say, it was kind of funny watching the pair of them reenact what Maura did. 

Maura and I cuddled on the couch a bit.  Josh got home, bringing her a bunny doll, which she instantly hugged and held onto.  As we sat there on the couch, we noticed she had goosebumps.  I felt her head and found it to be really warm.  We sent a boy for the thermometer, and discovered her temperature to be about 102.8.  Great.  Maura has no history of seizures with a fever.  But we also realized in talking that neither Josh nor I gave her medication yesterday morning.  So was it the missing medication dose?  The fever?  Neither?  Both?  Who knows right now.

Her fever continued to go up, so we broke out the Motrin, which helped.  She made herself comfy on the little sofa and watched “Cars”.  She seemed to do better, so she was tucked into bed, with her new bunny doll, where she went right to sleep.

Hopefully tomorrow will be better for her.

But now…oh, now you’ve gotten my back up.  Not a smart move.

Backstory – my daughter Maura has a seizure disorder.  Her neurologist prescribed Trileptal, to control her seizures.  It worked.  It worked beautifully.  Within a few weeks of starting it, Maura made several developmental gains.  She had no side effects.  It was a beautiful relationship Maura had with Trileptal.

And then you stepped in.  First, you decided we had to get it through you.  It’s considered a maintenance medication, as she’ll be on it for years, therefore, it’s less expensive for our insurance to fill it through your company.  In theory, it should have made my life easier.  I mean, prescriptions dropped off at my doorstep?  Wonderful!  Except things went wrong.  It didn’t make my life easier. 

Then you decided to screw with my daughter’s life. 

The last shipment we got has started this chain of events.  The package was broken along the way.  I called about it when I read on the FedEx site that her medication was being sent back.  We were running low and since it had taken three weeks from when I ordered it to this point, I was concerned that we’d be out of medication before the new shipment would even be processed.  The customer service rep said to me that the generic was being shipped out.  Generic?  What?  He used the full name (oxcarbazepine), which is the type of medication Maura was on.  Not knowing if there was a miscommunication, I decided to wait and see.

The package arrived and inside, a full shipment.  Four bottles of generic meds.  Not our beloved Trileptal (and let me tell you, you do come to love your child’s seizure meds when they work well.)  First thing I did was call the doctor.  He explained that there shouldn’t be a difference as it should be the same meds, he’d been prescribing it to patients, and most generics were made by the same company as the brand name.  I read off the company name and he said “Oh.  No, that’s not the same company.”  He assured me I could call if there were any problems and he’d get her switched back.  Reassured, I decided to give it a try.

Within the first week, her teachers reported that Maura was very cranky.  When I say cranky, I mean her teacher who adores her called me up and said “I’m glad today was a half day, she’s being a little beast!”  Keep in mind, Maura’s usually a happy, laid back child.  She continued to be cranky, with moodiness added in.  I took her and her sister to dance class.  Maura has to wait while her sister goes first.  She spent the entire forty-five minutes howling and screeching in the hallway because she didn’t understand why she couldn’t dance with her sister.  She knew this the weeks before the medication switch.  She suddenly became afraid of showering – the girl who loves the water so much she should have been a mermaid, now afraid of the shower?  Ridiculous.  Last weekend, she had an episode that we think might have been a partial seizure.  She got scared and was shaking.  Afterwards she was fine.  But we were done with these meds.

So I called the doctor, and they called in a new prescription.  The box arrived today and we were all excited.  “We” meaning myself, my husband, her siblings who were tired of her screeching, her two teachers and her aide.  I glanced at the invoice slip…and to my surprise saw that I owed you $80.

Now, this should not be!  So I called…once I found a phone number, then hit zero because I didn’t want to refill a prescription, but that was the only phone number on the invoice.  I finally got a human being, who explained to me that because the prescription was a name brand, I was charged $80.  I asked for clarification, because it didn’t make sense.  I was told that since the doctor chose the name brand when there was a generic available, we had to pay $80.  I said “Even though we tried the generic and it caused side effects?” 

Yes, that’s right.  If I want the medication that doesn’t turn my daughter into a moody, cranky, water-fearing girl, I have to pay $80 a shipment for that privilege. 

Even better – according to your customer service representative, my options are -

A) an appeals process that will take weeks and we may be denied anyway. 

or

B) have the doctor try a different medication that doesn’t cost as much.

That’s right!  I’ve been told by your company to mess around with my daughter’s seizure medication by “trying new medications”.  You may sell prescription medications, but you obviously don’t know how they work.  Or else you know that you don’t just switch seizure medications, and that when you find one that works and doesn’t cause your child all sorts of side effects, you stick with it like glue.  I refuse to screw around with my daughter’s seizure medication so you can save a few dollars. 

I had the customer service rep file a formal complaint, because I was told there was no one else I could talk to about this matter.  No live person was available who could talk to me about this.  But maybe I can get through to you via the Internet.  I can at least voice my disgust for you here. 

All I want is the medication that makes my daughter feel good, controls her seizures and helps her develop the best she can cognitively.  You are against that because it will cost you too much money.  Ergo, I now feel that my daughter’s well-being isn’t as important as your profit margins. For that I say, thanks for nothing. 

Sincerely,

A really ticked-off mom

P.S. – thanks for following me on Twitter after I posted that I hated you.  Maybe someone will actually read this now and something will happen.

Before I get any further, I must publically state that Maura’s teachers, aide, and others at the school have been wonderful.  Also, I don’t like telling tales on people who make decisions for my child, but sometimes, you just get so frustrated, you have to let it out.

Our big problem was that due to a series of unforseen events, Maura’s therapies have not been what they should be.  And the options given to us have not been acceptable.  I sat in a whole meeting saying “this is unacceptable” while going through the options.

For example – one option for Maura’s speech therapy was twice on Mondays, twice on Wednesdays.  Um…while that technically covered the requirements of the IEP, it was quite frankly a sucky option.  This is what we’ve been running into – sucky options.  We’ve also dealt with bare minimums and basic plans. 

We’ve been told multiple times to get a lawyer.  We’ve been told that our district isn’t equipped to handle a child like Maura, who needs so much more.  School budgets are getting cut more and more.  I’ve been told that these budget cuts won’t affect Maura’s services, but let’s be honest.  This came from the same mouth that told me Maura would get everything she needed, and that was a lie. 

Now IEP time is upon us.  We are girding our proverbial loins in preparation.  I have two books to read up on the laws and rights of special ed.  I know what I want for Maura and I’m not afraid to ask for it.  We have always tried to work with the school.  We have always given them the benefit of the doubt.  We don’t go in threatening to sue them if they don’t give us the sun, moon and stars.  We are always conscious of the fact that our child is not the only child in that school.  In return, we have been taken advantage of.  Maura has missed out on a lot of her therapies.  So now, we play hardball. 

Now, this is where other people say “Why don’t you move?”  LIke in somehow moving, these problems would disappear.  Newsflash – things like this happen everywhere.  Our district is actually pretty darn good compared to most I’ve heard of in talking to other parents.  There also is no other school right now for Maura to go to.  For all of their bragging about how great their town is, and despite having the Great and Powerful University of Michigan Health Care System, Ann Arbor has no school appropriate for a child like Maura.  Not even a therapy center. 

So we try to make this work.  Despite all the therapy issues, Maura has thrived.  She’s had great people working with her this year on a daily basis – her teachers and her aide have all gone above and beyond.  And Maura has loved school this year.  That’s why she’s still there.  We just have to ensure she gets all she needs now.

I found this out through a friend – it’s a communication device that can run through a Nintendo DS.  I’m half-tempted to get this for Maura just because she’s always trying to steal the older siblings DS’s.  I think this is a really great tool for children who can’t communicate. 

Price-wise – a Nintendo DS is about $129.  The Tap to Talk is a yearly subscription of $99 a year.  Not too bad.  Especially since other devices are much much more in price.

So her double ear infection is on the mend, and she’s doing well again.  We prefer Maura happy and healthy.  It’s just better that way.