Broken down and broken hearted

I almost broke down crying at the grocery store today. Izzy had two seizures there. She was helping me push the cart. She would freeze and stare. All I could do is stand by her and pat her back. People might have saw. If they did why would it matter but its so hard. I hate the doctors for not calling me back and for putting my daughter through this. Life is crazy! I can't look away for one moment. I can't work full time and give my child what she needs. I'm working part time this week but even that is hard. I have a wonderful student teacher who is finishing up with me. I'm so torn. My daughter comes first. I can't do it all. I need to save my energy for her so I can be the mom she needs me to be. Yesterday Izabelle asked me if she was going to die after coming out of two back to back seizures... It broke my heart. 

Animal Therapy

Dear cute old lady at the animal shelter today, When you were talking to my daughter she didn't respond because she was having a seizure. It might have looked like as if she was ignoring you as she stared straight ahead. Thanks for being so sweet and patient with us…that is if you even could hear me when I told you she was seizing… even if you didn't… thank you :)

- life on med. changes...

My strong girl :)

These med changes have been so hard. Izabelle's stomach hurts all day. I can't feed her enough to keep her comfortable and I'm giving her children's ibprophen to help. She's seizing basically every two hours. The staring kind but for a moment before she went to sleep tonight I flashed back to the hospital bed at Boston Children's and got scared she wouldn't come out of it. I'm afraid to let her sleep alone. I put the baby monitor on. If she's having this many seizures during the day I can only imagine how many she's having at night. She may be noticing that she's having seizures now. She asked what her friends would do if she had one at school. It was so hard today to contain her. This med makes her wired! Countless time outs. I feel bad because it's the meds fault not hers. She told me she loved me and hugged and kissed me before bed. It melted my heart. She makes me strive everyday to be a better person. It's true that God never gives us something we can't handle. I just wish she didn't have to suffer through all this. Hope it's a better day seizure wise tomorrow.

Fighting the big fight!!!

This week was sooooooo productive in many many ways. 

• On Tuesday, I finally got a hold of Dr. Bergin from Boston Children's. It turns out that she never received any of my phone messages. I don't know how many times I had called to get the results of Izabelle's stay at Children's in December. She finally outlined the EEG data for me over the phone and sent me a fax at work of the final report from the Neuro team. I was able to expedite our next appointment for March 3rd. We will be meeting with both Dr. Bergin and a Dietitian to discuss the Ketogenic Diet.
• On Wednesday, Kristine Bennett from the Epilepsy Foundation of New England was able to attend an 'emergency' IEP meeting for Izabelle. She was a fierce resource to have in my ball court and inspired the entire team. I was taken back for a moment by how intensive it will be to create a safe educational program for my daughter especially when she begins the Ketogenic Diet. I am getting Izabelle a ONE ON ONE!!!! 
• I met with Mr. Bailey from AOS 93 on Thursday to discuss Izabelle's superintendent agreement for next year. I also spoke with a delegate from the Department of Education to get advice as to how to proceed with this process. It seems I am doing all the right things. I will see what both supers say… I hope it is in the best interest of my daughter and if not I will go to the Governor! lol
• We have started a Gluten Free and Dairy Free diet to help Izabelle's stomach that has been in knots since her latest dosing and med changes. If its not better in two weeks Izabelle will be going to her PCP. 
• I got referrals for a multitude of tests for Izabelle from her neuro. in Portland and PCP. This includes a neuropsych. eval, developmental testing…etc.

I am truly astonished by how many steps there are to getting what my daughter needs. It's sometimes totally overwhelming especially because I am doing it all on my own. 

On deck for this week are:

• Visiting the Department of Human Services to check on Izabelle's application for the Katie Beckett option for Mainecare (health insurance)
• Visiting the Social Security office to get Izabelle declared disabled so we can get other state benefits. 

Mamabear to the rescue!

This quote is so true but I'd like you to try a fifteen minute seizure. That's what Izabelle had on Thursday morning. It was the 'lucid dreaming' type again. We woke up, used the bathroom then started the morning before school routine. I knew something was off. Call it Mama's intuition but I could see it in Izabelle's eyes. I handed Izabelle a granola bar and that's when it happened. Her eyes became fully dilated and she was in a daze. Izabelle was able to motion for me to unwrap the granola bar, nod that she wanted milk but as she walked around the kitchen her body was arched forward and she was moving slowly as she wandered. With this type of seizure Izabelle is aware of her surrounding as she seizes. She looses some control of her motor and language functions. It's as if she is stuck in another place for a while. This time the seizure went on for ten then fifteen minutes…
I just wanted it to be over!
I wanted my daughter back!
It was this morning that I decided that I no longer trusted my daughter to do anything alone (while going through med changes)… especially at school.
I was just picturing her seizing alone on the playground without anyone to keep her safe, walking the school halls not knowing where to go… sitting in the bathroom...seizing without help. This seems to be the pattern when Izabelle changes meds. She seizes more before her body adjusts…that is if it adjusts. Most of the time we have to wait three weeks to see if the medication is viable.
I stormed into school that morning (where I work), marched down the hall to the special education room and waited for Izabelle's special ed teacher to make a plan for how my daughter was going to stay safe at school. Ideas of Izabelle acquiring a 'one on one' aide at school have been on the peripheral but as the special ed teacher and I spoke… I realized that it was time. It was time to DEMAND the special services my child needed… and now! Of course it seemed like everyone was out of the building sick that day…including our favorite education technician but somehow between the special ed. team and the regular classroom teacher we came up with a temporary plan to keep Izabelle safe at school. We started the process of setting up Izabelle's IEP meeting for the following week.
I am blessed that the educational coordinator from the New England Epilepsy Foundation, Kristine Bennett will be at the meeting with me to make sure that this educational plan will fit the needs of my child and her very unique needs as an epileptic. Yes… I proudly call myself MamaBear… It's my job to stand up for my child's right to be safe and to access school/her environment in a way that meets her individual needs both medically and educationally…Onward!

More direction ->

This is a picture from our time at Boston Children's in December. It looks like we will be headed down there again at the end of the month. I had the most productive appointment with Izabelle's Portland Neurologist Peter Morrison on Friday. I was overly prepared with notes and tons of questions. I even taped our conversation. I first had to let him know what happened while we were at Boston Children's because they failed to provide him with notes about her EEG and video monitoring. He did have all the radiology imaging. At this point, although overwhelmed I feel like we have more direction and more hope.
At this point, this is our plan:
Genetic testing - We will have genetic testing to see if Izabelle has inherited the predisposition for Epilepsy. This will help with med choices and pin pointing her type of Epilepsy.
Investigating Charlotte's Web/Medical Marijuana without THC - I will be meeting with a team of professionals out of Portland who have created a tincture that contains the helpful benefits of Marijuana without the THC high component. The doctor was all about this option and I was quite surprised.
I'm glad I asked!
Pharmaceutical med changes - Izabelle will start a new med tonight and we will start reducing Zonisamide.
Developmental Testing - We will be seen by a child developmental specialist to determine ways that we can best assist Izabelle through transitions and daily life as Epilepsy is truly taking a toll on her ability to be independent.
The Ketogenic Diet - We will be headed to Boston Children's to meet with Dr. Bergin again, this time to discuss the Ketogenic diet. There is a high possibility that we will start the diet by the end of the school year. This would mean another five day admission to Boston Children's Hospital. 

This is a picture of Izabelle's current medications and vitamin supplements. In the box behind I have prepared a card with directions for each step of her med changes week by week for her father who she visits on the weekend.
This is our life!