The Vicious Cycle returns

Crash!

Bang.

Pop!

My heart smacks down to the ground. 

My head is spinning. 

My hope diminished (for the moment).

So many ups the past few weeks... The come down is even more vivid and intense now. 

My once coherent angelic child has left, and her counterpart, 'Dizzy Izzy' is showing herself again. 

Seizures steal. Time, Vitality, Balance, Energy, Experiences and Love. 

Spinning like a top, she is 'rolling' off of diasapam. Like an addict in withdrawal, she becomes insane like a wild animal.

She can't hear me... Her brain is unwired... 

Body. Constantly moving. Falling, tripping, breaking, acrobatics on crack, rocking, hopping, climbing, throwing.

Voice. Incessantly talking... Babbling so I cannot make out the words. Perceverating. Broken record. Forgetful. 

Heart. Seeking love and attention in all the wrong ways. 

Must be so scared and lonely.

Can't embrace her... She's like a injured moth trying to get away... I don't want to get head butted in the lip again... Or kicked, poked, licked...

Soul. I put her to bed telling her to put her hands on her heart to give herself the 'healing energy'. I advise her to tell herself: 'I do not feel good in my body. I love and accept myself.' Repeat.

She's a magical child. Energy work will be good for us. Time to reconnect and find our balance just in time for another cycle. 

The cycle IS vicious. 

In love

I'm in love with the sweetness that is my daughter, the innate strength she holds, the caring selfless nature she possesses, the tender love she sheds on all who she lets in close. 

Izabelle underwent the Vagus Nerve implant surgery on Tuesday. Honestly and sadly, the outpatient procedure was nothing compared to our weeks spent at Boston Children's hospital hooked up to leads, sleep deprived and off medication. 

She is the best patient! They all loved her!

I cried for a moment when I saw these for the first time but honestly, technology is fast forwarding the healing process and by summer these will be faint white lines just like the one from my C section.

Izabelle did amazing. She woke up easily after the procedure and got to go home by 1pm the same day.

The hardest part so far was our third day home. The morning started with seizures. Later, she became very sick to her stomach. Her body must have been rejecting the anesthetics or was expelling built up fluid in her esophagus from the breathing tube used during surgery... I'm not really clear on why the delay in these symptoms. It just wasn't fun. 

Last night, I laid on the floor staring at this beautiful face. She's a trooper. I'm in love with my daughter. 

Heartbreak

What a challenging week. We traveled to see two nationally/locally renown neurologists... 

No need for details... we got nowhere... Still in the same boat. If anything, I think it convinced us that the Vagus Nerve Stimulator is our last true option. 

Thanksgiving night, my mother and I traveled half way to Dartmouth Hitchcock and stayed at a hotel. 

We arrived at 12:30 in the morning Friday... 

The first seizure rose my mother and I abruptly from our sleep at about 4:45am...

After the seizure subsided... My mother broke down in tears... 

Mother: 

It's not fair... (Classic response)

I didn't want this for you Rachel...

There must be an answer...

Came flooding out like a monsoon of pent up emotion. 

Me: 

Numb now to these emotions, I somehow mustered up the energy to counsel my mother... 

Despite the urge to be resentful, angry and bitter... 

I maintained compassion ... This is my life and others new to the trauma that is epilepsy have such a hard time digesting it... I get that. 

I'm grateful my mother abruptly was thrown into the trenches with me. 

The battle is only most real to those who preservere and fight each and every day until we let others in to join us in combat.. This is epilepsy awareness... We have to let others in our life experience that same RAW HOPELESS pain while we watch our sweet children suffer. 

It isn't fair.

It fucking sucks.

But I must maintain strength for my child regardless.

I must be able to see the light and beauty in the short moments of clarity and fleeting consciousness.

I could choose to be bitter whilst watching others grieve our profound loss, the 

child she would have been, had she not been tainted with this heartless and cruel condition. 

But no, I choose to be in a state of compassion and love. Xo

Medical update

So much has happened medically since I last wrote a blog entry. 

Last you heard we had a completely amazing 14 day round of seizure freedom... Honestly, I'm not sure who or what was responsible... Izabelle had had a full Reiki treatment at the common ground fair, she had an increase of Banzel... unfortunately it wasn't the medical MJ. 

After that, Izabelle's little brain went back to its normal pattern of seizing every fifth or sixth day. Only emergency a dose of diazepam will end the monstrous seizures, as they come in cycles now. We re-tested medazolam and lorazepam to no avail... 

We went to Boston Children's hospital again in October. The MRI didn't show any changes and the spinal puncture that Izabelle endured didn't indicate anything out of the ordinary for neurotransmitter levels. We tried to have the doctors test for autoimmune encephalitis at that time, but they wouldn't... we have yet to go to the lab, but that test has been ordered and approved.

We saw Dr. Sulak and his wife Dr. Saab... the most loving and pure pair of married doctors one could ever wish for. We came up with the plan to continue trying THC rescues both orally and in the form of a suppository. He also recommended that we increase THCa levels weekly with a goal of 7mg 2x's a day... Sadly, this produced more grand mals... and we had to take her off of it... The THC rescues didn't work either...

SO, this mama went on another frenzy of proactive searching for next steps...

Along with other moms in the epilepsy community, I came up with this list:

• Autoimmune encephalitis test - pending
• Visit Dr. Souhel Najjar at Lenox Hill, NYC
• Visit Dartmouth Hitchcock Epilepsy Center - Friday, November 27th (tomorrow)
• Visit Dr. K in Long Island - Total jerk and only had one suggestion... 
• Visit Mass General Hospital
• More Reiki - energy work
• VNS - DAD DOESN'T CONCUR... PATIENCE... 
• Tumeric
• Hyperbaric oxygen chamber... a no go by the PCP
• CBD in the future, again...
• IVIG - antibodies are delivered through an IV... NEURO says this is an option... now if I can only get him to follow through
• Test for tape worm.. just in case - pending
• NERF2 - Reduces oxidative stress - I want to try it for my autoimmune disorder
• Retry ONFI?

Grateful for... discovering and caring for myself

I am so sorry I haven't added much here in a long while. Honestly, I've been on a road rediscovering myself and taking care of my own needs. Who would have thought? We, Warrior parents... get us stuck in the down position after the wind is knocked out of us... both hypothetically and literally. 

I'm 34 years old and I am so grateful that I have finally found out, that in order for this ship to sail properly, the ship needs to be consistently maintained to stay afloat. 

My foundation is finally stable. I have confidence, I have faith and I have abundant joy in my daily life despite Izabelle's struggle.

You see, no one gave me a choice of weather or not I wanted to lead this path as a parent/individual. I believe this is my life test, my mission set forth by a higher power (possibly) and it's my job to conquer it, not submit to it. 

My mission is to continue fighting for a cure for epilepsy with all my might. I was chosen to be my child's hero and champion. 

In order to fulfill this mission, my body, mind and spirit need to be healthy. 

I created a Facebook page called Selfcare for Warriormamas. 

The purpose of this creation was not only to remind myself to take time for self care but also to help other women to remember to think of themselves first... 
not second...  
What a foreign concept? Self-first? 

Please join us!

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. 

The fight for answers resumes...

I've just about had it! Seizures are back in full swing just as if we never tried any other measures to control them. We've been trying various amounts and types of medical cannabis since late December to no avail. Last week Izabelle pretty much went into status for three days. Diastat and Adivan failed to stop them quickly. We were told to up pharmaceutical meds again by our neurologist. We have noticed that Izabelle has been coming down with low grade fevers consistently for weeks. We had every test in the book done to rule out infection. No infections or anything irregular about her bloodwork or urine analysis. 

Today we visited Dr. Smith for a Genetics consult. The day started out with a grand mal at home. Izabelle had a second grand mal in the car on the way there. I had to administer diastat on the side of the highway. It was another first for me. I left her unconscious in the back seat and continued driving her to the appointment. I had already called the neuro office and knew that if anything else happened that we would be in good hands. When I arrived, I called the doctors office and asked for a wheel chair to transport Izabelle inside. 

She slept through most of the appointment. Dr. Smith will be looking at Izabelle's chromosomes and DNA more closely. I may also go through with some testing myself. I'm also relieved that Dr. Smith will also be doing a whole metabolic panel as well. Not one doctor has recommended this and I hope we learn something! I have also requested another MRI and may be doing some spinal fluid testing for neurotransmitters in the future.  Tomorrow we go see a neurosurgeon regarding the VNS implant. I hope it's an easier day of traveling. 

Epilepsy Awareness Day

Thursday was Epilepsy Awareness Day! 

Our family made sure to wear purple! Did you?

I'm not alone!

Over the past two weeks Izabelle has been predicting her own seizures. Some are false alarms, some are lightning fast complex partials and a few times Izabelle notified me just in time to catch her as she went into a grand mal. Yesterday, Izabelle had 18 moments when she thought she was going to have a seizure during the day. As we were getting ready for bed and picking out pajamas, Izabelle bolted in front of me, stood and stared at me and said abruptly, "I'm going to have a seizure!" I yelled to her father to come right away because I could see that this time it was going to be a big one. Dale ran toward us, stood behind Izabelle and assumed such a rehearsed position of locking his arms under Izabelle's to hold her up until she goes limp enough to fall or be lowered to the ground. We both sat with her on the carpeted floor as her entire body jerked over and over again rhythmically...eyes dilated and sunk in. I always brush my hands across Izabelle's face, hold her hands and wait for the calm. Dale stayed with us the whole time.  This one knocked her out. It was like her brain had been saving abnormal electrical bursts for that moment in time. She was so drained. We put her to bed early. 

I thought we had made it through the storm. I thought that we had ended our pattern of threes... But bam at 2am there was another... At four another... I ran for the diastat. Dale positioned our little girl and I administered it like a pro. No hesitation at all. After she was settled, I laid down in bed, snuggled close to my life partner, my heart was racing, my nerves leaving me restless... I woke up and felt dead and broken... I can't believe I lived like that for months in the fall...

Truly parenting medically fragile children takes a toll on the caregivers body and mind. It made me into an insomniac and culminated into full blown PTSD. I'm working on taking better care of myself. I went to work a bit late. I'm going to bed early tonight. I'm so glad I'm not alone now. This was meant to be. Thank God she helped bring us back together. I've got the best partner in the world to help me raise and fight for this beautiful child! 

Our spirited child :)

This spirited child doesn't let seizures hold her back!

She is silly and oh so funny!

She is theatrical and creative!

She is mischievous!

She is loving and compassionate! 

She is an athlete!

She is a beautiful gift!

She is musical just like her parents!

And.. She is bad-ass! 

Letter to Senator Johnson

Hello Senator Johnson, 

We have met through RSU 12, as I am the GT coordinator and teacher there. 

In addition, I am raising a disabled seven year old child with refractory epilepsy. It is my intention to speak with or write a letter to a Maine senator or house representative regarding Maine's failing healthcare system and it's negative affect on working families. I, along with many other hard working Mainers have been faced daily with the decision of wether to continue working or stay home and take care of our disabled children. Our family has been promised up to 24 hours of in home nursing from the Department of Human Services. We have been fighting for a year to find someone. This is not only due to a dysfunctional health care system, but also to a possible pediatric nursing shortage. I am amazed at what disabled adults in this state are getting for behavioral and medical services meanwhile, funding for disabled children are being cut. Please let me know what I can do to be an advocate for other families like ours in the beautiful state of Maine. 

Thanks for your time, 

Sincerely, Rachel S. Hamlin

I'm not just mad, I'M PISSED OFF!!!

I am fed up with DHHS, I'm fed up with nursing companies, I'm fed up with private companies that have stopped offering pediatric services because of lack of FUNDING (yea, including MOBIUS, down the street)! I'm fed up with being told that there isn't a soul to service my child within any agency in Maine. I'm sick of hearing NO!

We have had Mainecare since April of 2014. Sequel Care of Maine and Maxim health have been looking for a nurse for Izabelle since then. Not only do they publish our need within their company, but they also send it out to every single nursing company within the state.

I called Kristine Bennett from the Epilepsy Foundation of New England two days ago to see if she had any other ideas for in home care. She called the state on my behalf...

I heard from them today. It is clear that the DHHS and private companies are NOT on the same page. Every piece of info the state worker gave me on the phone was either conflicting with what I already knew or related to something I have done over and over again.

What am I supposed to do?

Knock down the door of every freaking nursing company in Maine?

What's the point, when they have already gotten a message that we have needed someone since last year and not sent anyone our way? PLUS... I found out today that the state doesn't even recommend leaving pediatric patients alone with RN's... What the hell!!!

It also turns out that Izabelle's most recent medical eval is 6 months old. She was doing better six months ago... now were are up to 6-7 GRAND MALS a week... her condition has worsened.  I have a letter from her neuro to prove it but... agencies won't re-evaluate Izabelle unless they have a nurse waiting to take our case. Kristine Bennett from the Epilepsy Foundation of New England said herself that there is a NURSING SHORTAGE in Maine.

The most frustrating thing is that I know first hand how much our state does for disabled adults...

shame on them for not even doing half of it for children!

It's just sad...

Of course I thought we would have a 'normal' morning: I'd get ready to go to work, get Izabelle ready for school, bring her to her aunts for before care and get to work on time... 

Umm...Nope.

Yea, RIGHT!!! 

This time I got Izabelle dressed for school and just as I was going to instruct her to put her backpack on... 

BAM!!! Grand Mal seizure! 

I've had so much pressure recently at work regarding my attendance... I've used all my sick time and from now on, time off is unpaid. 

Dale and I worked out a system. He will work part-time until the summer so he can be present most days of the work week so I can be present even if there is seizure activity. Now I know I will always make it through Monday, Thursday and Friday at work. Tuesdays and Wednesdays we are both working.

Because of all this pressure to be at work on time and keep good attendance...I had to leave Izabelle's side during her postictal period this time.

I literally left her laying passed out cold on the floor on top of my school bags: 

I felt awful. Like a traitor. 

All I did was get my coat on, grab meds and finish packing my school bag...but it felt unnatural and wrong not to be able to wait for my child to come back to me from the unknown. 

I like to hold her and cradle her like a tiny babe when she's recovering from a seizure. 

I hold her... hold her until she can mutter just one word to let me know:

she's back. 

But today... I didn't have that luxury.

I woke my daughter as much as possible, out of her deep 'sleep' and somehow... Was able to get my kid downstairs and out the door. 

She could barely stand. 

I saw my neighbor as I used a safety grip under Izabelle's arms to guide her to the car... 

It was just all wrong! 

Every bit of this feels like I'm going against my maternal instincts.

I cried on and off throughout the day...

I've realized that I'm afraid...

That each seizure takes a little bit of my daughter away...

And I may never get who 

she 

once

was 

back.

 

Reunited

Part Two:

First off, I want to thank my friends for being the kind of people who are supportive and respectful of my personal journey NO MATTER WHAT! 

As some of you read in part one... Step mom is out of the picture but not just for me.

My ex husbands story is his to tell. This is mine.

I got divorced in 2011 after an eight year relationship with my daughter's father. I did what I needed to do at the time to take care of myself and Izabelle in the best way I knew how. No matter what I did I never fell out of love. Dale Hamlin Jr. Is and will always be the love of my life. 

We have decided to make our relationship work, not only for ourselves but for Izabelle. A child like ours needs two parents to raise and fight for her. I need an ally, someone to lean on, someone to soothe me in the middle of the night after scary seizures... Who better, then my daughters father? 

The amazing thing is... We have both grown so much over the past few years... In the ways we didn't have the capacity to while together. 

This has always been my dream... I'm so much stronger and wiser now... And so is he. It's meant to be. Destiny. I even get a beautiful boy named Leaf to watch grow. 

Cheers to second chances and cheers to love. Xo

New beginnings: Part One

PART 1: Some of you may wonder what happened to this beautiful scene, because there has been some severing of ties as of late, and some huge new developments. 

In May, I took my ex husband to court bc he and his new wife were not working with me up to the degree Izabelle needed. We went to court and I received temporary full custody just before Izabelle's admission to Boston children's hospital to start the ketogenic diet. Dale and his then wife Miri, came to Boston for a couple days. I was terrified of Miri. I had built her up to be this huge scary force (maybe I should have stuck with that). I was the one who stayed w Izzy in the hospital the full six days. Izabelle struggled with taking her meds. They had went from a yummy sweet grape suspension to a pill crushed in applesauce, water or yogurt at the time. I had no clue at the time how awful 1/4 tsp of baking soda tasted and the nurses began to mix her sodium bicarbonate (baking soda) in her meds,therefore beginning a huge aversion to taking medicine. For days in the hospital, nurses had to hold Izabelle down and force her to take her meds. Once home, Izabelle fought me the first night in a heated anxiety provoked fury. I called in all my friends for days... But quickly realized that I couldn't handle her on the ketogenic diet on my own. I had already applied for a in home nurse but no one was available. I was broken down, miserable and feeling like a failure of a mother. I was so scared for Izabelle's life. I called her Dad one night when I was at my last rope. Between the two of us, we were able to coax izzy into taking her medicine. Eventually, I was so worn out that I broke down emotionally. I handed Izabelle over to her dad and her then step mom for a whole week. Somehow, Miri and Dale got Izabelle to take her meds and I immediately felt like an even worse parent. At the time, I had been w Izabelle for 70-80% of the time. I was her constant, although I couldn't understand why they could 'force' her to take her meds and I couldn't. It just wasn't in me. I could sense Izabelles distress and it killed me to force her into something she didn't want to do. That was how my relationship w Miri started. She had me in a low place. I felt bad about myself as a mom and she seemed to thrive on that. I gave Miri the benefit of the doubt, a good ole try. I was very cautious. Immediately, she began to open up to me and I listened. Whenever we went to doctors visits she dominated the conversation and made herself out to be the savior. She even had me believing I wasn't good at disciplining my child and that's why Izabelle wouldn't take her meds after being discharged from the hospital! She even had the doctors believing this! The behaviorist and the neuro in Boston! I was so burnt out from pushing for Izabelle's needs that I almost gave up. We did the ketogenic diet for six months. I started to realize that it wasn't working in October 2014. I told Miri and Dale that I thought it was making matters worse. For a whole day, Miri bullied me via text and email into keeping izzy on the diet. Not because it was good for izzy but bc Miri was so good at it and was hell bent on continuing the prison we were all living in. What she said made me feel like I was giving up on my child. She was so pushy, hurtful and had my former husband believing she was right. In December, we went to the neuro for a EEG and follow up. He said that the diet didn't work and that her seizures were worsening. 

I was right. 

Six months of hell ended around Christmas while Miri took it on herself to wean the diet over the holiday break. 

Our next route was medical merhiuana. The doctor gave us a perscrip on the spot. While I was busy at work the week after, Miri busily called around for dispensaries and asked questions. We were all so busy, so the info didn't get transferred immediately. Miri went to Georgia for 10 days. While she was gone, Izzys seizures got worse to the point of three grand mals a night. I think I developed PTSD at this point from hearing her scream in her sleep (I haven't told everyone, but I had to go to my doctor bc I literally stopped sleeping myself). I texted Izzys dad and got permission to go to the dispensorary to get our first round of Mj. I didn't have time to text Miri and I guess neither did Dale. By the time I was at the dispensorary, Miri had found out what I was up to and was furious. She texted me relentlessly, threw accusations and put downs via text, literally while I was trying to get medicine to help my daughter! I told her it wasn't good timing and to stop (I never lashed back). She wouldn't stop. I had to block her phone calls, texts... And later my former husband's email that she used to bombard me with more tongue lashings. I also learned that when she is hurt (even if the actions of others were unintentional) that she lashes out.. I had to cut her out of my life and raise my daughter with her Dad again. She had overstepped too many times.  

I am so happy to be raising my daughter with her father again...

They told me ...

Some days, I just don't know how I'm still standing. 

These seizure full days play with my ability to stay balanced, whole and healthy... They interrupt work, play and our basic needs. 

The society we live in is not set up to support a family in crisis like this. The fragile human faculty can only carry so much load at once before collapsing. Life in America for middle class workers is a pressure cooker, let alone throw in a incurable illness. 

They told me I make too much money for food stamps or free health ins. 

They told me I make too much money to draw from Izabelle's social security.

I proved to the state that Izabelle's condition was so bad that we needed secondary insurance. 

I proved to the state that Izabelle deserves both nursing and behavioral services. 

What happens? The govenor cuts funding that helps children like mine. No one wants split shifts before and afterschool so we pay out of pocket.

We prove we need more help and get respite care services just to find out no one can service us in the rural area in which we live.

What am I learning...

I know just how little income i need to make in order to get state assistance... $23,500 or less.

If you live somewhere rural, you don't get help... So move to a city. 

Being a single mom is impossible in this situation so find someone to live with fast... 

Family should come first but my own biological family is too busy and caught up in their own lives to help. My new family is my community. 

I'm done with the idea of the American Dream. Fuck that shit. 

Exhausted all my sick time. Again.

Letter to my supervisors:

Rough seizure morning again. I hope she will snap out of it. I need to call out: I was to teach at Whitefield, take my child to a new psychiatrist in Rockland then retrieve her new medication in Auburn... All in one day, and we are moving into a new apartment tomorrow (I have sold my house to have more time and money to take care of my child). I gave Izabelle emergency seizure medication to stop any more from coming. This happened Wednesday except my mother in law retrieved her so I could teach and finish a formal observation at Windsor. Seizures come unannounced and knock us out for the count. Leaving her like this goes against all of my motherly instincts. I'm sorry my child's illness interrupts my ability to be a consistently present employee. There is no cure and the doctors say her condition is worsening as she grows. Dr. Morrison, Maine Med Neurology, will be faxing a doctor's note. I know I'm out of sick time and cannot take any more until March 24th 2015. Until then, I will need permission to take leave with out pay when necessary. 

I'm waiting for solace. 

The animals all know to lay with her now when she's in recovery. 

The beginning of our medical marihuana journey

Izabelle has been on medical merijuana for over a month now. She started on a tincture from the Wellness Connection of Maine. The tincture was given 4-5 times a day. We did see a mild decrease of seizure activity even with the level of Treleptal being left at a much lower dosing when we started. Mild decrease and 3/4s of the medication was a good start. 

Now the one problem with the medicine provided by the Wellness Connection is the fact that they have not been tested. There is no way to tell how much THC and CBD there is in each dose, or even in each bottle. 

We next were led to the Remedy Compassion Center where not only do they have tested product by a very high CBD strain very similar to the one developed in Colorodo. The only difference is CBD in Colorodo has about 10grams more CBD per ml then they do at this dispensary. For us, this is a good start because believe me that if this doesn't work, I would most definitely relocate our family to Colorodo to cure her of these horrible seizures. 

This is a picture of Izabelle with the co founder of the Remedy Compassion Center, Jenna. 

We've barely made it a week and Izabelle's seizures have increased. I had a phone conversation yesterday about tincture versus edibles... Edibles stay in the system longer but not at the same levels and it takes about 30minutes to 1 hour to become effective. The tincture is effective within minutes but only stays in the system for up to two hours. I am going to give it about two weeks but I'm beginning to believe that tinctures given at the most frequent seizure times will prove to be more effective. 

Time will tell. 

Mama breakdown number two

I cannot even begin to describe how taxing 2014 was on me not only emotionally but physically. 

About two months ago, Izabelle began waking up to three times in one night seizing. I have a baby monitor in Izabelle's room to alert me... These new seizures start with a shrill high pitched SCREAM. Which startles me abruptly into rescue mode. I run and flip Izabelle from her belly to her side as she convulses so she doesn't suffocate. I realize that shortly after the start of these events that I began to wake up more in the middle of the night. I couldn't fall asleep. I became more and more tired and continued to compensate for the lack of energy with caffeinated drinks throughout each day. My trip to New York to see family and the pressure to perform as well as advocate for Izabelle's new needs within a new environment and the added pressure of friends, family, work and basic life expectations basically made me collapse and break down emotionally. I had such a hard time making the decision to go back to work full time again. I wanted to stay home and take care of Izabelle myself. Because of the house not selling, I had to maintain the same income, work even harder and find more help at home. I have done all these things but not without harm to myself. I neglect my own needs all the time. I over extend and burn out. I ended up having to take a week off. I saw my doctor numerous times. My blood pressure was so high and I was In emotional and physical distress. My doctors told me to take the week off to take care of myself so I had the strength to keep caring for my sweet high needs child. I couldn't keep burning at both ends. I'm hoping to develop new routines in selfcare so I don't end up in these dark caotic places again.

Wish Granted

After a doctors visit in Wiscasset on Thursday last week, I decided to stop at the local animal shelter to fill out a wish list for a new dog. At the top of my list was pug and number seven was beagle. I handed in my paperwork to Peggy, the woman at the counter, and said that she had just the dog I had described and brought out Pearl, a beautiful 3 year old, spayed female. It was love at first sight. 

I adopted her on Saturday with the hope of training her to be not only a therapy dog but also a seizure alert dog!!!

This was Izabelle's first time meeting Pearl!!!

This is my adoption picture!

She is wonderful with Izabelle.

We have already started to work toward some of our goals. 

We have all been sleeping together so Pearl can become accustomed to sleeping with Izabelle. 

Next I will train Pearl to sleep in Izabelle's bed. 

So far, during Izabelle's most recent seizure at my house, I called Pearl over to sit with us so she could smell Izabelle. When the seizure seiced, Pearl and Izabelle sat on the couch together for the postictal period. I was impressed by how well Pearl did. I was also grateful for the soothing act of petting a dog during this hard time. 

Many wishes have been coming true. 

Our new fur baby has completed our little family!