Friday, March 29, 2013

15

 

 

15

 

 

That’s the number of episodes he’s had since September.

 

 

The first two times it happened we just assumed it was a tummy bug.  I mean kids throw up all the time.  Yeah, it was weird that he only spilled once.  And also that he never had a fever or any other tummy buggy symptoms.  But not everything is a zebra, you know.

 

 

Or at least that’s what I told myself for months.

 

 

Stop reading into this has been my on going inner heart-alogue.

 

 

Then around December…I could feel the worry rising inside.

 

 

I mean, healthy people don’t vomit out of the blue a couple times a month.  He had several episodes that were particularly scary.  There was that Sunday when Miss. Kerrie, who has been our church helper for years now, wanted me to take him home with her because the episode he had was that intense.  She was worried enough to warrant mom being there too.  And then there was that morning we found him covered in vomit.  He’d had an episode while we were sleeping and we never even knew.  No joke, that scared the you know what right outta us.  The fragility of his life on display and needing to be washed in hot water.

 

 

Then sometime over the last month or so he started saying, “the room shaking” with the episodes.

 

 

And that was when I stopped trying to reason it away as reflux.  That was when I stopped trying to eliminate any new foods we may have introduced, because maybe it’s an allergy.  Stopped thinking his immune system was just taking a hard hit this year.

 

 

 

That was when I let myself fully embrace what my heart already knew.

 

 

This is some kind of neurological event.

 

 

And there are only two to choose from.  It’s either an emerging seizure type or it’s late onset hydrocephalus. 

 

 

Either one are viable.

 

 

I mean, he has catastrophic epilepsy.  We’ve always known that Trevor’s battle with epilepsy was going to be life-long.  Though we continue to hope that we stay one punch ahead of the beast.

 

 

But when I look at the collection of symptoms as a whole…

 

 

which are more than just the vomiting…

 

 

and when I think about them all together…

 

 

deep down in my soul…

 

 

where Science isn’t the only or the loudest voice, because my mommy instinct reigns.  Down there.  In that place.  The place where I knew long before he laid on the operating table that someday we would be there.  The place where I knew that I knew that our journey with Infantile Spasms was not over even though the experts told me differently.  In that deep down place…I believe this to be late onset pressure.

 

 

Of course, mommy instinct always runs in the wall called Medical Professionals.  Who ,by the way, despite their degrees and credentials are not infallible.  And there is only one (none other than Dr. Rockstar, of course) in whose care I fully feel I can relax.

 

 

He agrees with my mommy instinct.  And I didn’t even tell him I was thinking pressure.  I simply emailed him Trevor’s symptoms and asked if in his vast experience with hemi-kids he has seen a pattern as described emerge.

 

 

Per his norm, he quickly responded via email:

 

 

 I think more than anything he needs either a CT or MRI to rule out pressure changes in the brain.

 

 

So we’re doing the responsible thing.  Pursuing neuro-surgical intervention locally first.  Because Detroit is so very far from home.  And it would be just so much easier to handle this close to home.

 

 

He had another over night episode a few days after we visited with our local neuro-surgeon.  She seems lovely.  And even though her Physician's Assistant tried to give us the blow off…she did not.  And that gave me hope that perhaps this can be dealt with locally.  She has experience with hemi-cases.  And by the end of our appointment, I had the impression that she also felt this was pressure related.  Although she assured me it is not an emergency.  She felt Trevor’s hydrocephalus is chronic and not acute.  To be honest, I didn’t know there was a difference.  I’m learning new neuro things every day.  I should really see if any colleges offer life credits for being Trevy’s mommy!

 

 

He has an MRI in two weeks.

 

 

I have already set my heart.  If they tell us he’s fine.  If they tell us there is nothing wrong.

 

 

Then we must go to Detroit.

 

 

The only place in the world I would seek a second opinion.

 

 

Not every day is crisis in this life.  In fact, some days are wonderfully, amazingly, boringly normal!

 

 

But every day has the potential for crisis.

 

 

And that is a very heavy heart load to carry.

 

 

…danielle

12 comments:

charity said...

i hope you figure out what is going on and can help him

happy's mommy said...

Me too!!!

...danielle

nchlsgdk said...

Danielle-
Just a thought, but have Trevor's meds changed at all since the summer? Thomas went through a time where he had vomiting episodes-back when we started meds this past time-which we tracked back to one of the meds he was on. The vomiting didn't start right when we started the med(Zarontin), but after he was on it a few months. Didn't realize that's what was causing it until we took him off of it because it wasn't working.

Karen

happy's mommy said...

It's a good thought and I actually explored that too. Lab levels are all okay. We weaned Topomax but didn't add any seizure meds. The episodes started before we added Adderall but I still tried eliminating it. He had episodes both on and off of it. Then I thought it might be a milk allergy because we switched from 1% to whole. BTW...I swear he's thinking better on the whole milk! My random side plug for seeing a natropath every once in a while. It wasn't milk either.

And there are other symptoms too.

For instance, he wasn't pee pee trained but he could go over 2 hours and have dry pants last year. Now we have to take him every 45 mins and sometimes he pees more often. I thought maybe it's a UTI. But nope. And wouldn't you know inability to control your bladder is a symptom of pressure.

Ugh.

And his seizure are out of control. For the past three years (until now) they have responded to meds. Seizures are also a symptom of pressure.

But mostly, it's hard not to really believe it's pressure when Dr. Rockstar feels everything is pointing that way.

The prayers of a seizure mom. I'm praying like crazy that the MRI is clear and definitive. And that I can send the disc to Dr. Rockstar and he agrees too.

...d

joanne foltz said...

Hugs from TZ~~~ Bibi

happy's mommy said...

Thank you, Bibi.

...d

Andi S said...

Hoping you find the answers you're looking for and don't need to make the long trip. But if you do, you've got a friend in the area. It's a longer drive now, but we're still here. :)

Barbara TherExtras said...

"Chronic" does not satisfy my mommy heart for waiting 2 weeks to image.

Nor does it satisfy my therapist heart for a child & family I care about. Quick diagnosis leads to quick treatment, alleviation of symptoms. No?

Does Dr Rockstar agree with delayed diagnostic imaging?

Once a shunt is placed, symptoms of increased pressure have always been responded to as emergent, in my experience. But perhaps that is thinking of the medical past. :-(

Adesta said...

D, Sending lots of prayers and good thoughts that the MRI shows what you are looking for. Making the long trip to Detroit, yet again, isn't the ideal thing for anyone, let alone when you are dealing with a child that can have a seizure at any given moment and needs to go potty every 45 minutes or so!!! Talk about making a long trip longer!! Keeping my fingers crossed! {hugs}

happy's mommy said...

Andi...I'll be sure to let you know if we do have to make the trip! We could have a hospital homeschool-coop! LOL

Miss. B...if he weren't so happy in-between episodes I would totally be at the ER. But in between episodes he's back to himself and at least I can breathe.

Adesta...thanks, hon. I *heart* you!

...d

Barbara TherExtras said...

Has it been 2 weeks yet?

happy's mommy said...

MRI is tomorrow. Which is probably why I'm having trouble sleeping!

...d