Letting it all sink in...

'Your daughter DOES have special needs' keeps running through my head from the IEP meeting last Wednesday. Not only that... but she needs a SELF-CONTAINED classroom and a life skills program.

No not my child...

Yes, feel free to slap me.

This is brutal honesty. 

Did I think this is where I would be today...? The mother of a child with very difficult to control seizures who's academic learning is impared to the point of being pulled out of the main stream classroom! I thought everything would go fine in kindergarten...that she'd catch up. She learns and regresses, learns and regresses, learns and regresses... Just like the medications... We always struggle and end up right where we began... At square one. These seizures have taken such a toll on my daughters system. Her short term and long term memories are intermittent...she forgets what she's doing at times in seconds...

My child is different then the rest. 

She's special and strong and spunky and yes oh so sassy! 

She's a jump roping queen!

She's a rock star! Loves Katy Perry and the Smashing Pumpkins.

She loves and cares for animals. She can own her own animal shelter some day!

She's a diver a splasher a fish!!

She's empathetic and kind. The best friend.

She's an awesome sharer. Better than some fourteen year olds I kno!

She's a lover a hugger a kisser on the cheeker!

She's beautiful. Beautiful because shes been through more than many at such a young age. She takes it all in stride! Bet your game face doesn't compare!

She's my best teacher... Always pushing me to do my best.

She's my wonderful daughter.

I'll do anything for her happiness. 

Anything.

Where is my daughter, because the girl who is sassing me can't be her!

Where is my daughter, because the girl who is sassing me can't be her! 

This is what I have been thinking for about a week. I brought Izabelle to the neuro last Monday to show him the 50+ seizure videos that I captured and proved that YES my child is that .01 or .001% that gets MORE seizures instead of a decrease or no change at all with certain medications. I love our neuro but what did he do??? UP THE MEDICATION DOSE. What did I end up with??? A obstanant destructive child at home who multiple times this week has caused damage to her home and almost to herself. And myyyyyy did she sass me! What's worse is no behavior modification trick that I learned in nine years of teaching works... Toss the marble jar, sticker chart, prize bin, time out...out the window!!! And what did I replace it with??? Confinement to her room. I removed her door in seconds, placed the bed on the floor and removed most breakable objects. I called the neuro and pediatrician Thursday last week and demanded that we stop Felbamate, the newest medication. Her last dose was at 7am this morning... He says I have 72 hours until it's out of her system. I CANT WAIT 72 HOURS!!! I want my daughter BACK NOW!!!! Ahhh!!!

Time to change schools...

Yesterday Izabelle's school held a individualized education plan meeting to discuss her current needs. Izabelle's doctors and I have pushed for a one on one aide along with a seizure action plan that includes CPR/First Aide if needed in an emergency. 

Decisions basically state that they cannot provide the services needed for Izabelle at current school location in which I work. They would like to reevaluate Izabelle after she gets back from her boston children's stay on May 1st to make a final decision. If they decide that she hasn't made much growth academically then shed go into a self contained classroom in another building. The only choice in the RSU would be another school further north which is totally inconvenient. I would at this time transfer her to Nobleboro School but they don't have the programming so it sounds like Jefferson Village School would be a better fit.

I have decided to get the ball rolling for Izabelle's school transfer now. I have contacted all the powers that be in our home district and am awaiting reply. A change in schools with only two months of school left is rediculous. I want to secure proper programming for Izabelle ASAP. 

I'm pushing forward with this one the best way I know how. There is more to the story then this but the time for action is now.

The road narrows...

We traveled to Portland to see Izabelle's neurologist about Izabelle's current med changes and their affect on our life. I have 50+ videos of seizure footage thanks to Robert Moss the inventor of Seizure tracker.com. Izabelle had a seizure in the office. I asked tons of questions. He affirmed that Izabelle's condition was not typical. That normally children respond well to medications. Her condition is very refractory. At this point there may only be 5-6 pharmaceutical drugs that are appropriate for Izabelle to try. We have to finish the Felbamate med trial even if it's causing more seizures. In a week or two Izabelle will have another 72 hr EEG to see what current activity looks like. Keto admission is still set for April 22nd. Hopefully, naturally the seizure count will go down at that point. We are still averaging 7-10 a day now. I'm interviewing with a nursing company on Wednesday to get in home care at least in the mornings before school. If the keto diet doesn't work... It's down to those 5-6 seizure meds, medical marihuana and the vagus nerve stimulator.

Dear all friends and family who have recommended Medical Marijuana:

I have contacted Izabelle's neuro in Portland numerous times about medical marihuana. Maine med is currently working on liscencing to prescribe canibus tinctures without THC but cannot do anything now. I have contacted a Naturalpath Doctor in Portland but insurance doesn't cover it. $300 first visit.  $100 each follow up not including the Tincture. I do not have money for this right now. Can I pick up and move to another state where it is legal now? no. Our first hope is the Ketogenic diet. If that fails we are left with medical marihuana or pharmaceutical drugs. I love you all for trying to help but it's not legal at this time or affordable. If any benefactor wants to donate money to help get us there I'd do it in a heartbeat. 

More med changes...

I'm going to go backwards instead this time: Just got off the phone with an on call doctor from Maine Med Neurology. Izzy has had two nights in which she has had flurries of seizures lasting 8-10 minutes. Tonight she was stuck in a seizure for 8 minutes. I caught it on video with my new Seizure app. Afterwards she used the loo then I cradled her for a few minutes on the floor for she was worn out a bit. I AM COMING TO BELIEVE THAT THE LAST TWO MEDS HAVE CAUSED A INCREASE IN IZABELLE'S SEIZURES INSTEAD OF DECREASING THEM... But doctors know best or so they should and the on call doctor says this may be a rebound off of the last med that failed her (Vimpat). Not so happy once again. No matter what Izabelle will have to do this med trial. It's either now or during the ketogenic diet.

Put yourself in my shoes...

Imagine...

Imagine that someone you love went unconscious

not once

but multiple times daily… 

They checked out 

couldn't move 

couldn't talk or hear you

Imagine them unconscious on the toilet sick w diarrhea motionless in your arms

Or choking on food after coming back to consiousness after eating breakfast

And you don't even know if you could save them...

You can't look away for a second or you'll miss something...

You lie awake at night and wonder if they will die in their sleep.

This is what I live right now...

Keto consult.

We had a productive visit to Boston Children's yesterday. We met with nurses, our neurologist and our Keto dietitian for about two hours. At this point they are running blood and urine tests to determine weather or not Izabelle is a good candidate for the Keto diet. We will know within two weeks if she is or not. If Izabelle is a Keto candidate we will then be contacted by a scheduler to schedule Izabelle's inpatient stay at Boston Children's. This is a Tuesday-Saturday or Sunday admission. They said that we may get in within 4-6 weeks as they have some open spots. 

As for Izabelle's current condition. Izabelle is still seizing about 11 times a day at this point even with a med increase last Tuesday. I have called the neurologist in Portland again to work on more med changes. Izabelle and I had a big scare yesterday morning while she was eating oatmeal for breakfast. She had a panic attack when she came back to consciousness after a seizure while eating. She may have gaged or choked… She was fine but I am left very nervous. I am getting CPR/First Aide trained ASAP and I am encouraging her father to do the same.

Moms understand best

Last night at the Yawkey Family Inn was eye opening. I ventured out to Trader Joes to buy Izabelle all her gluten and dairy free items then came back to the inn to cook her dinner. A nice volunteer family made lasagna, garlic bread, cookies and salad. We had hamburgers, fries and salad. As we were eating families started to spill into the kitchen. We first met a little girl named Kaitlin. Kaitlin has Rett's syndrome https://www.rettsyndrome.org.   She has all the classic features: repetitive motioning of her hands and cannot speak. She was the most beautiful girl as was her mother. Later, another mom and her daughter Sydney came in to the kitchen. Sydney also has Rett's. Izabelle was overly curious about Sydney because well...Sydney kept spitting uncontrollably. Mommy teaching moment fail! I kept trying to refocus Izabelle on eating and probably called more attention to ourselves then needed. My line is: 'God makes us all different, special and unique. God gave you seizures and that's how God made them.' Izabelle wanted to know why Sydney spat and if she could talk and why she was in a wheelchair. After cleaning up dinner, we approached Sydney and her mother who were eating in the common room instead of with the rest of the families. I couldn't help but empathize and wonder how isolated that Mommy felt. We introduced ourselves and we were met with warmth and kindness. Sydney's mother wanted to hear all about Izabelle's seizures and our past and current appointments. It turns out that both Sydney and Kaitlin both have seizures but Keppra, a medication that failed Izabelle keeps their seizure activity at bay. I'm just overwhelmed by how warm this group of families are. It's so good to be here. This morning Izabelle woke at 5am with a string of three seizures. I'm buying a video monitor for her room when I get home so I can be more aware of her nighttime seizures. This is our life ... And no offence but it could be much worse. Counting our blessings!!

This was how busy it was at Trader Joes!!

Hard week now back to Boston

This has been one of the most trying weeks in my whole life. Izabelle has been seizing about seven to ten times a day at all times of her daily life including showering, eating, eliminating, playing and more. She had three at a potluck, two while out bowling... Her meds were adjusted again. I think the increase in Treleptal has taken away just a few seizures a day. I took Thursday and Friday off last week because Izzy was having gastrointestinal issues again. I thought this was due to medication changes but the doctors think not. Snow is on it's way again to Boston so we left today. We managed to get a room for two nights at the Yawkey Family Inn again. They have us four free passes to the aquarium. The woman who works here said to use the other two another time! Also there is free dinner tonight and tomorrow. I still have to shop for Izzy because of her diet. We are goin to take the T tommorow to the aquarium before our appointments. Wish us luck!!!