A happy break!

I always think that I'm going to Jinx things if I announce that things are going well for Izabelle but I'm happy to say that Izabelle has gone 12 days without a grand mal!!! She's had about five-six small complex partials but no emergency meds were administered!!!

 I'm thinking it could be that maybe Banzel has regulated in her system, a small increase of THCa and or the reiki treatment we both had last Saturday. No matter what, I am grateful beyond words. She's clear as day and is starting to read again a bit!!!!!! 

Becoming routine...

As I write this my heart is still pounding hard in my chest from waking up to seizures so early in the morning. 3:30am, 4:30am, diastat, she's out for the count... 

Seven days seizure free this time. 

I was so ready to be torn away from work yesterday but it never happened. Today, we should make it to school on time. I feel so comfortable with the team of people we have working with Izabelle. They will be ready to take over when I get her there. This cycle has become a routine. I think we have a plan for almost every deviation.

Now if only I could just sleep one more hour...

We will be off to Boston Thursday night for tests on Friday. A third MRI and a spinal to check neurotransmitter levels. Wish us luck. 

Still holding onto a few silly strands of hope that we find an answer. 

Disappointed again...

Izabelle had a lot of morning seizures yesterday but we didn't use diastat. I'm sick of the side effects week to week and hate that her body is becoming dependent on it. We took the opportunity to try to combat the seizures with cannabis and learned it didn't work yet again. It's very hard to time it. There are still a few things we can try. We have friends who use cannabis as a rescue and it will stop the seizure in its tracks. I wish this were true for Izabelle. I will try anything. As I expected, this morning she had another grand mal at 4:30am. I administered diastat because I know that she will continue the same pattern throughout today and tomorrow without it. If Dale and I didn't have to work, maybe we would just ride it out and experiment with cannabis some more but we can't. This summer the cycle went three days... I almost took her to the hospital. 

Izabelle will probably now be  'seizure free' for another four-six days until we do this all over again. So sad for her that really out of a week she only has about three-four days of normalcy. I know others suffer worse and so has she. This may be the best we can do. 

I'm hoping the Banzel has regulated in her system at this point. I'm going to work on scheduling another EEG but I suspect there isn't improvement even with three pharmas. 

Today, Kristine Binnet from the Epilepsy Foindation is presenting at both daycare and school. We are in the thick of it. I hope Izabelle recovers enough to be a part of it. Poor thing will be loopy today. 

Spread Awareness

On soapbox...

Today, I am convinced. No, not just convinced but I'm convinced with conviction... convinced with conviction that Epilepsy Awareness needs to be taught. It's not an option. Without education about difference, people are ignorent to human condition(s) vastly different to themselves, and loose the opportunity to become enlightened to the plight of others. No one is too young to learn compassion. No one is too young to learn acceptance and to respect difference. And, no one is too young to learn how to be tender. 

Today the meaning of the saying 'our

children are our best teachers' had a chance to shine through my two nieces, age seven and eleven, who unbeknownst to them, partook in one of their cousin's harder seizure days. Consequently, these youngsters aquired wisdom that I hope will serve them and others on their journey through life as they encounter diversely-abled individuals. So many life lessons were discussed today. I must say that I am one very proud Aunt! The seven year old was outspoken and curious about the grand mal seizure she witnessed in close proximity. Her biggest question was 'will I have a seizure like that someday?'. This question arises out of a natural fear that many others may have. Will that scary thing: a illness or condition someday become my reality? We fear what we don't understand as humans. Fear of the unknown in children whose imaginations can run wild may quickly become out of proportion and may possibly be left ascue if we as adults don't intervene and explain on their level what occurred. All of the questions must be answered. My older niece, who was endearingly helpful and compassionate, too sought to understand the full nature of her cousin's struggle with seizures. These are some of the questions that spurred our discussions this afternoon:

- was she born with this

- when was her first seizure, can I see a picture of her at that age

- does anyone else have seizures in our family 

- what does a seizure feel like

- does she know what's happening during after before

- aren't you scared

- where have they happened 

- does she have them at school

- will she have another

- why does she scream or make that face 

- has she had them while she's sleeping 

- what if you miss one and aren't there

- what makes her body do that, why did she move her hands/arms like that 

- are the pets scared when she has a seizure

- what kind of medicine will stop it

- what if the medicine doesn't stop it

- do the doctors know how to fix it

- why don't the doctors know how to fix it

- will she wake up before we leave 

- will she remember what we did today 

Many emotions were felt and expressed in new moments of fright, confusion and nervousness, all in reaction to the seizure event today. I allowed the questions flow freely as they came and honestly and whole heartedly answered every single one. 

This is how we spread awareness. 

With education comes understanding. And hopefully with more understanding, comes compassion. 

I'm so grateful that organizations like the Epilepsy Foundation http://www.epilepsy.com/new-england

exist. 

We need to spread awareness so children like Izabelle can live in a world with compassion and understanding. Xo.

Off soapbox...

Finally a sense of calm...

Our Banzel trial has been the easiest medical trial yet! No bad side effects! In between seizures, Izabelle has at least three amazing bright days! I think it's almost been a month on the med? Time is going by so fast. Summer is ending and school starts next week. One year ago I was so anxious and scared as I fumbled to piece together before and afterschool care in my home so Izabelle's ketogenic diet could be followed through in the most safe and reliable environment. Everything came together then, just as it is now, except the amazing thing is the sense of calm I am experiencing. We found the most wonderful in home daycare for Izabelle! The family that runs it have experience with raising a child with a disability and are trilled to have Izabelle be a part of their program. Not only that, but the school district just hired a private driver to being Izabelle to school  from daycare! We met him today at the community library and it is evident that he is the man for the job! He was so sweet and kind. Izabelle even gave him a hug when he departed. I'm so grateful for my sweet child and all the people who help me raise her! What a blessing!

Did I jinx it?

This is my beautiful girl minutes before a seizure. I really was crossing my fingers and knocking on wood that we would go longer then five days seizure free on our first week of trialing Banzel. She was so clear and coherent today. Silly and happy as ever! I thought for sure the clarity would mean more time seizure free or at least lessening of seizure symptoms... These pharmas always change clinical signs or in other words the physical characteristics of a seizure. This one began as a 9-10 minute stare, some eye flutters, some twitching, heavy breathing and some semi-conscious behavior. She could track her father's movement with her eyes at times. I feel like everytime she has a long complex partial or focal seizure, I don't know when to use the rescue medicine. I hate the side effects of diastat, so this time I thought I'd try some activated THC oil. I only used 5mg and there was no change. The stare turned into a grand mal. Clearly a worse seizure. I really hope that her seizures DONT become even more severe. We've been down that road many times before. Med. Trials Suck!

I knocked on a lot of wood today, at Chrissy's diner and the walls and tables at home... I dare not say 'she's doing really well!' because I swear this happens. On a positive note, I have to say I thoroughly enjoyed my daughter today! We had so much fun fooling around. She was definitely 'hamming' it up! I had my daughter back for a couple days, she wasn't in a medicated fog and I devoured every second...

(Now, how am I going to get evening meds into this kid...) 

It's all mapped out

Izabelle and I traveled to Boston on Wednesday to meet the emfamus neurologist Dr. Pearl who was Reccomended by our friend Melissa who's son Noah has been seizure free for two months since their visit. 

After explaining Izabelles journey to both the attending and Dr Pearl they concur with Dr Morrison, our neuro in Maine. They are interested in the genetic and metabolic panels that were ordered by Dr. Smith and are ordering a MRI and the spinal (to test neurotransmitter levels) just to see if there is something there. They don't suspect there will be. They also think that Banzel is the right next med for her. This was reccomended already. They said the next step would be vns if nothing new is found. If that doesn't work then this will just be her way of life. I asked again if there was a possible way that Izabelle could still could outgrow the seizure they said yes. At age 10 or after puberty. Dear God I sure hope so!!! 

Izabelles increase of Zonisamide has helped shorten seizure duration a bit. She is super foggy and having a hard time processing both want she wants to say and what we say to her. Basically we choose to have a chaotic life with severe seizures with more windows of our spunky kid or we have less seizures and a sedated kid...there's still a few options we can try with cannabis but we can only change one variable at a time. 

Today we are enjoying a quiet morning at the lake.