My appologies for not updating in over a month.  We've had a lot happening in the Current household...

With the approval of the Medicaid Home Health Waiver, we've received nursing care for Drake.  We have LPNs in the house about 12 hours each day to help care for him.  What a huge weight that has lifted!  We've been working on projects around the house that we weren't able to get to in the past, spending time with a neglected six year old, relaxing for a change, and occassionally DC and I even get out of the house together without the kids.

Drake started on Stiripentol (a drug specifically designed for Dravet Syndrome, not yet FDA approved so we have to get it from Europe).  He started it six weeks ago and has now gone 35 days without a large seizure!  He's still having small seizures daily, but nothing that stops him from enjoying being three. The only downside is that it seems to be making him more sleepy, so he's taking an extra nap each day.  We were ecstatic to learn insurance would cover the bulk of the cost with no issues and waiting to find out if BCMH (Medicaid for children with medical handicaps in Ohio) will pick up the balance.

Thanks to DCs amazing coworkers, we quickly raised the funds needed for the Emfit movement monitor.  It is now installed under his mattress, but thankfully we've not yet had to find out whether it works or not.

And just last week, I got together with a couple other local Dravet moms to begin planning this year's Dravet Syndrome Foundation's Steps Toward a Cure charity walk in Toledo.  The walk will take place at Swan Creek Metropark on September 17th.  I'll be sharing information on how you can register to participate or make a donation in the near future.  In the meantime, if you work for or know of a company that would be interested in sponsoring the event or making a donation for the silent auction/can raffle, please contact me as soon as possible.

I hope you are all out there enjoying your summer and living life to its fullest...I know we are!

With Dravet Syndrome, nocturnal seizures become the norm as things progress.  We aren't there yet, but it could happen at any time.  We've decided to try to get an Emfit Movement Monitor to help us sleep a bit better at night.  The monitor is a thin pad that goes under the mattress and then will alarm when movement parameters are met.  Unfortunately, the alarm has not yet been FDA approved, therefore it's yet another expense that insurance won't cover; they aren't cheep.  A coworker of DC's set up an online fundraiser to help us purchase the monitor.  We're VERY close to meeting our goal.  Even a $1 donation would be a great help!  You can donate here: http://goo.gl/x4LiV.

But we desperately need your help!  We received an invoice today for the first three months of this medication, and it is 1,080 euros.  That's roughly $1550!  Insurance will hopefully reimburse us at some point, but it could take months, or even years, to run the appeal gauntlet to get coverage.  In the mean time, we must pay out of pocket.

Stiripentol is the only drug currently designed specifically for Dravet Syndrome.  The drug is not FDA approved, but does have "orphan drug" status; meaning we can get the drug from France, but most insurances will not cover it.  Drake's neurologist had been holding off on prescribing it based on the cost factor.  However, after the last few seizures, he recommended it was time to give this one a shot; we had no idea what the initial cost would be until after the drugs were already on their way to us (other than knowing it would not be cheap).  Drake has now been on various combinations of eight different seizure medications.  He's currently on four different meds.  Nothing has given us good control.  Stiripentol has been very effective for many (but not all) of the children we know that have DS.  We are very hopeful that the same will be true for Drake; it will take several months to determine its effectiveness.

At this time, any paypal donations that we receive (through the Wish List page) will go directly toward the costs of Stiripentol unless otherwise specified in the donation notes.  We thank all that are able to help, even in the smallest way.

The last couple weeks have been unbelievably busy in the Current household.  On top of all our routine appointments that keep us running (therapy three times a week, school, etc), I had a final project and final exams for school, we were approved for Medicaid Waiver (more in a minute on that), the boys had well-check appointments, DC has been working overtime and is on a quest to fix up as much as he can around the house.  We're exhausted.

As taxing as it is to get services initiated, the Medicaid Waiver is going to be a HUGE relief when we get things up and running.  This means that Drake not only has full Medicaid coverage now, but he qualifies for in-home nursing care. Twelve hours a day, seven days a week!  That means we need several nurses, so we've been interviewing nurses from a local agency for nearly three weeks.  After ruling out a few duds, we think we've finally got a pretty good group.  The first nurse started Friday evening; it was crazy trying to not only do our routine stuff with the kids, but also training a new nurse and orienting her to everything she needs to know about Drake and our home.  She'll return Monday night, along with another nurse - so another stressful day of trying to get staff up to speed.  But once these two are onboard, we'll be able to step back a bit - the nurses will train each other.  The nurses' primary responsibility is to monitor Drake for seizure activity; but they'll also take care of as much/as little of his routine daily needs as we want them to.  Meds, meals, bathtime, dressing, diaper changes, and working on developmental goals through play.  Finally we'll be able to give Kevin some one on one time, spend time playing with Drake instead of every moment being about the tedious things that have to be done, keep the house clean, get projects done around the house, and maybe DC and I will even have the opportunity to get out on our own from time to time!!  Life changing.

We have two fundraisers going right now.  The first is to raise funds to get an Emfit movement monitor for Drake.  The Emfit alarm is a thin pad that slips under the mattress and will alarm if Drake's movements/breathing fall outside the set parameters.  It won't pick up all of his seizure types, but it will alert us to many of them.  It is one more measure to help us sleep better at night.  The alarm is not FDA approved, therefore insurance will not cover them.  They cost around $600.  If you'd like to help, please click here.

The other fundraiser is for Center for Courageous Kids.  We attended a Dravet family weekend there last year and it was wonderful!  Not only does the camp cater to children with special needs, but we were surrounded by other families that walk in the same shoes as us.  While the camp tries to provide everything at no cost to campers, they have asked that the Dravet families try to fundraise $300 each this year to help offset costs (we're such a rare syndrome group, that they don't get much outside funding to sponsor our group).  To do our part, we're doing a Thirty One catalog party.  Fifty percent of the consultant's (another Dravet mom) commission will go to CCK in honor of Drake and his friend Kaylynn.  Take a peak at the catalog.  Thirty One offers a fabulous selection of totes, purses and accessories at great prices.  You can order on-line (click on the link to my "party", or if you're local, I can meet up with you to go through the catalog and show you a few sample products.  Everyone who places an order will be placed in a drawing to win one of six great free products (one with custom embroidery!).

I'm having trouble adding links right now, so I'll just include the addresses here for now and try to come back and fix later.
Information on Emfit: http://www.emfit.com/
fundraising page: http://apps.facebook.com/fundrazr/activity/1b0d23dfd0c849cdb70854a119dd0686
information on Center for Courageous Kids: http://www.thecenterforcourageouskids.org
Thirty One: http://www.mythirtyone.com/45971/

Happy Mother's Day to all you great moms out there!  My little munchkin just crawled out of bed, so time for me to run

We spent the afternoon with family today.  Good food; good conversation; neice, nephew and cousins to chase after Drake so I could actually enjoy the food and conversation; and the clouds parted just in time for a lovely easter egg hunt outside.  Drake still didn't quite get the concept of hunting for eggs, but it was still fun while it lasted (I think he found 4 or 5 eggs).  It was a great break from the whirlwind month we've had.

Drake was back in the hospital for a status seizure last week.  He stopped breathing in the ambulance and had to be intubated this time.  He spent two days on the ventilator and one more day in the hospital for recovery and med adjustments (at least we got one of the big posh "new" rooms this time!).  Thankfully this time he did not seem to suffer any regression.  I don't think I could have handled two big hits in one month. 

He came home from the hospital the day before his third birthday.  Since we knew from experience he'd need some additional time to recover, we've postponed the birthday celebrations until next weekend.  We did have his favorite General Tso's chicken, cake and presents from mom, dad and brother the day of his birthday; even though he wouldn't have known the difference, we couldn't let the actual day go completely unacknowledged.

The biggest news of the month is that Drake was accepted for Medicaid/home health care waiver.  This means he'll begin receiving in home nursing care very soon.  Unless you care for a special needs child, you can't begin to know what this means to us.  We'll finally be able to get stuff done around the house.  Our poor yard will no longer be completely neglected.  Heck, we might even get that garden we've been talking about for years in this year.  DC and I will actually be able to go out on dates from time to time (it's been about 8 months!).  Kevin will finally have parents with a little free time to help him with homework or just spend time playing with him.  Our lives are once again about to change drastically!

Now, if only the van weren't falling apart.  And the garage were cleaned out.  And the back deck wasn't rotting.  It just never ends.  But somehow, we keep muddling through. :)

Today is Purple Day.  A young girl started the event a few years back to raise epilepsy awareness and it has caught on world wide.  The concept is simple, wear purple on March 26th to promote epilepsy awareness.  www.purpleday.org  Do you have your purple on today?

The last few weeks have been pretty rough for Drake.  Two weeks ago he had a seizure at school that required transport to the ER.  Thankfully he was fine by the time I got there.  This past Monday, we noticed that he was coming down with a cold.  Monday afternoon, seizure.  Tuesday afternoon seizure.  Off to the ped who was pretty sure it was just "something viral," but she went ahead and prescribed antibiotic to be safe.  Tuesday night, before I'd had a chance to pick up the antibiotic, seizure.  This time the seizures didn't stop.  He'd seize for a couple minutes, have a couple minutes of recovery and start seizing again.  This went on for about 15-20 minutes, so we gave Diastat.  Still seizing 10 minutes later, so another dose of Diastat.  Still seizing 10 minutes later, so we called 911.  When they arrived he was still actively seizing.  He received two doses of Ativan in the ambulance and earned himself a trip to the hospital with sirens blaring.   In the ER he started seizing again; two more doses of Ativan.  Nearly two hours after it all started, he finally was resting peacefully.  Since he had so many rescue meds, the admitted him to the ICU.  He kept spiking a fever, so several tests were run to try to figure out what the culprit was.  After a day in the ICU, they decided he was stable enough to move to a regular room.  He still couldn't bear weight and looked incredibly drugged up...and continued to spike fevers and have some bizarre seizure activity (and wasn't sleeping more than two hours at a stretch). An EEG was started.  Finally Thursday night, they got the results from the Strep test...we had a cause and antibiotics were started.  Friday he was looking better, the EEG was taken off, he was bearing weight and even walked the halls a bit, using Sushi for balance.  Unfortunately he got a little cocky and let go of Sushi and crashed head first into a door jam, splitting his head open.  Thankfully the blood was far worse than the actual cut, a little Dermabond from the Trauma team and crisis averted.  He continued to have small seizures however, seemed to be increasing.  So when his neurologist came in Friday evening, it was decided to add another med and to be safe, we'd keep him in the hospital at least one more day to see how the introduction of this new med goes.  He also recommends that we have Drake fitted for a helmet in light of the earlier fall and his continued weekness and poor balance/coordination.  So that's where we're at right now.  Hopefully going home tomorrow, Purple Day.

Oh, and I know you're wondering.  Yes, Sushi has been alerting us to the seizures!  She's even starting to bark if she can't get to Drake (Monday she was in her kennel up in Drake's bedroom and we were down in the kitchen when Sushi started barking like crazy.  15 minutes later, Drake was on the floor seizing.  Sushi didn't stop barking untiPretty crazy that a minor case of Strep throat has resulted in a five day hospital stay.  Such is the life of Dravet Syndrome!

Drake started a new med last night (Zonegran).  The neurologist feels that the blinking we're seeing may indeed be seizure activity and the hope is that by addint this new medication we can get it under control.  But starting new AEDs can be a terrifying process.  There are so many unknowns and risks associated with them...each person reacts completely different to them.  So while we titrate up over the next three weeks, we're going to be a bit on edge here in the Current household.  Some of the known effects we'll be on the lookout for:  lack of sweating (which can result in overheating, more seizures, heat stroke - we dealt with this with a previous med as well), sedation, increased seizures, deterioration of tone, balance and walking, deterioration of speach.  Really hoping we see none of these and instead simply see the seizure activity decrease.  Next neurology appointment scheduled for April 1.

For over two weeks we've enjoyed little to no seizure activity; just as we were getting comfortable and finally letting our guard down a bit, the darn DS monster had to sneak back into our lives.

About a week ago Drake started experiencing an increase in sleep disturbances.  Started out with him waking super early (between 3:30 and 4:30am).  He'd play in his room a bit and finally settle down and fall back asleep an hour or two later.  Then he started waking more and more during the night; sometimes only for a few seconds, other times getting up and wandering his room for several minutes.  Then he started screaming out in his sleep; a horrible, blood-curdling, "i'm in pain/distress" cry; it would only last a few seconds and he never seemed to actually wake.

Then we noticed the eye blinking begin.  We've seen this randomly in the past; but on Saturday it literally went on all day long with only a few brief 10-20 minute breaks.  It wasn't affected by activity or rest; he continued on with his normal activities but was very slow to respond, seemed exceptionally defiant and sometimes during periods of more rapid blinking he'd stand motionless for a second or two.  I was pretty sure we were seeing some sort of seizure activity but thought maybe it was a tic or an eye problem of some sort instead; but after consulting with our "Dravet family" online, I was 99% sure it was seizures.

The blinking continued on Sunday.  I called the neurologists office this morning to find out how I could get video clips to him for review; I was told his nurse is out all week but she would call me Monday with her e-mail address.  Tonight however, the blinking progressed into a definite seizure - though quite different from seizures we've seen in the past.  The seizure lasted just under 4 minutes and then he slept for an hour, woke long enough to take his meds and call grandma and grandpa to say hello and then went back down for the night.

Guess I'll be back on the phone with the neurologist's office in the morning to tell them Monday isn't good enough - we need his input NOW! 

That's the lesson with Dravet - don't ever get comfortable, because just when you do, another curve ball will be thrown your way.

I should be studying right now; I have a Pharmacology exam at 8am and I don't feel very prepared for it.  But I had to take a moment to write here before life runs away from me again and I never get a chance to post this.  I'll come back to the most recent happening of the day and why I'm saying thank you shortly, first an update on Drake's neurology appointment and other happenings of the day.

We met with the neurologist at noon today.  Well, I should say, we were there in time for our 12:00 appointment, but true to form, we were kept waiting over an hour.  Ever tried entertaining an energetic, sleep deprived, special needs two year old in a boring waiting room with no children's activities for over an hour?  Not an easy task!  But we kept our smiles on, sure that we'd get the results from his EEG and have a new-found direction that would garner some new hope in light of the recent increase in seizure activity.  Instead, we were greeted with a perplexed neurologist saying he didn't see anything on the EEG.  Really?  He had three tonic-clonic seizures one of the days we were there!  We were told that he'd have to go back and review the files again; he must have missed a file or two when doing his review.  Regardless, we know we've been seeing an increase in seizures, so we discussed our options at this point.  We asked about Stiripentol and Clobazam, two drugs not currently FDA approved but that are proving to be very useful in Dravet cases.  Because it can be such a fight to get the meds however, he suggested we wait until we've tried some other options first.  So, we're adjusting the Depakote dosage - we'll now have to remember to give it to him on-time three times a day.  However, Drake's liver enzyme levels were getting near the top of the "safe zone" (liver toxicity and high amonia are common effects of this drug), so we'll need to go for repeat blood work in two weeks, two weeks after that and then once a month to keep a close eye on this.  He recommended Vimpat as our next drug option - I don't know much about this one, so time to start doing a bit more research again.  We talked again about the ketogenic diet or modified atkins diet and decided that Drake may not be a good candidate for these right now because of the trouble we already have with getting him to eat well; we'll revisit these options again in a few months or so.  We also spoke briefly about a surgical implant called a Vagus Nerve Stimulator (VNS), but agreed that this would probably be our "last hope" after several other drug and diet failures.  Such is the life of Dravet.  We will be searching for the perfect combination most likely for years to come.  If we're lucky, eventually Drake will have only a couple seizures a year; if we're like many others, we'll exhaust all of these options and still have poor seizure control.  It's a fight worth fighting.

After the appointment, we had to finally suck it up and call one of the HVAC guys that we got quotes from a few weeks ago (our furnace is dying) and agree to have them do the job.  This was a very painful decision.  We can't live without a properly operating furnace and A/C - it's not just about comfort either.  For Drake, any drastic changes in temperature can set off a chain reaction of terrible seizure events.  Our furnace is over 20 years old, no longer serviceable and not working properly.  There have been mornings that we wake to a 50 degree house.  Somehow DC has managed to keep it running for several months - but we have to reset it dozens of times a day or it just stops coming on.  The A/C is equally as old, and while it was operating fine last year, we feared that this year it could go bad - and high heat affects Drake way more than the cold.  We would not be able to remain in our home without a properly working A/C.  The quotes we received also included an air purification system that will even remove virus particles from the home.  And since the slightest of illnesses can also set off seizures, we decided this was an important feature to add in.  All totalled, we're looking at $10,000.  We don't have that kind of money.  We can't even make our full house payments right now (SO thankful that my parents are our mortgager and have agreed to accept lower payments until we can get back on our feet - whenever that may be).  With great reluctance, we had to again go to my parents and ask for help with this hefty bill.  If it weren't for them, I don't know what we would do.  Thanks mom & dad...we love you!  It's so difficult to ask for help like this though...it seems like we just keep digging ourselves deeper and deeper into a whole.  No matter how hard we try, no matter how much we try to cut our expenses...we just never seem to have enough.

This evening, after struggling to get Drake to sleep, I was finally sitting at the kitchen table trying to study when there was a knock on the door.  I figured it was the neighbor who often stops by to talk with my husband.  Instead, I found a young girl that I didn't recognize (she may have been one of the neighborhood girls, but I wasn't sure).  She handed me an envelope and told me it was a blessing for my family.  A bit confused, I smiled and said thank you and she was gone.  I shut the door and opened the envelope.  Inside I found a note:

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort...2 Corinthians 1:3

We were created to need community, to love, serve, and help one another.

Jesus loves you all...

There was also a bank envelope - inside, $200.  I sat down and cried. I don't know who this gift is from.  I don't know how they knew of our needs.  But I hope they will read this and know how very very greatful we are; it couldn't have come at a better time. 

As promised, yesterday after naptime, I bundled the boys up and we headed out to play in the snow.  Drake had a wonderful time...for about 10 minutes.  The little stinker refused to keep his gloves on.  He had great fun immitating his brothers' efforts to make snow angels and then throwing "snow balls."  But once his hands were painfully cold, he began crying and we were done.  Poor little guy cried for about 15 minutes, grabbing his beloved blanky and heading upstairs to cuddle in bed for a few minutes.  There were a few moments while outside that he sort of spaced out and was very slow to respond to me.  Left me wondering if he was having small seizures and I the crying inside was a bit "odd"...left me wondering if it was actually seizure related as well.  I hate that every little thing that is different leaves me wondering if it's related to seizures.  :(