I am her champion, her warrior, her protector, her biggest fan

It's so true, that we, as parents would do anything for our children. Anything!

Tuesday into Wednesday morning Izabelle had four to five convulsive grand mal seizures. I didn't sleep. 

When Izabelle seizes now, it's accompanied by a loud scream. I have a baby monitor in my room that only amplifies the noise. Therefore, I'm startled even more when I'm alerted that she is seizing. 

Izabelle sleeps on her stomach. When she seizes her face gets pressed into her pillow. I run to flip her on her side everytime, so she doesn't suffocate. 

Seizures come whenever they want. Sometimes with no warning. They bring with them a state of emergency. My body fills with adrenaline. Then I crash. I crash emotionally and physically. 

Yesterday, I decided that it couldn't wait until Saturday to go to the dispensary to get Izabelle's newest therapy. The hopeful miracle drug. 

I never would have imagined in my wildest dreams that I would go alone to a medical merhiwana clinic to fight for my daughter's life. 

I was impressed by the professionalism of the facility and the empathy the employees had for my sweet daughter. 

We started the therapy last night. It's 3:28 am. No seizures yet. I hope it stays that way. For both our sakes. 

Theft of Time

In the middle of writing this post on FACEBOOK last night, to share Izabelle's first night of Hanukkah with friends and family, Izabelle began to seize as she enjoyed her first Hanukkah present, a trampoline, fully equipped with handles and padding... I ran to her and laid her down on her side in the middle of her new toy, then carried her to the couch, only to watch her drift off to sleep, literally minutes after she had just been gleefully jumping up and down on her newest toy. 

When it all settled in, I couldn't help but feel short changed, like time was stolen from both Izabelle and myself on the first night of a Holiday that I equivalate with Christmas morning.

The seizure stole the first night of Hanukkah, without any warning or avail! I became angry at the world and at God for a moment. 

Why would someone steal this moment from my innocent daughter? I know all the possible responses I may elicit from others such as, 'be happy with what you have', 'it could be worse', 'at least there are seven more days of Hanukkah'. 

I don't really care. I hate this disorder. I hate the POWERLESSNESS! 

She didn't ask for this. 

Huge changes, huge relief and coming to acceptance...

On Wednesday this week, Miri (stepmom) and I, along with Leaf, Izabelle's half-brother, accompanied Izabelle down to Maine Med Neurology to consult with Dr. Morrison about how to proceed with Izabelle's seizure treatment after he had the time to look over the results of her ambulatory EEG from the week prior. We already knew that the EEG didn't look vastly different then EEG's of the past and that Izabelle's epilepsy was of one of the rarest forms encountered by Dr. Morrison. We had so many questions: what was to come?, what was next?, why?, why?, why?... and this is what we found out:

Izabelle had completely titrated off of her medication Treleptal to see if her EEG would look better. We were specifically looking for less abnormal brain activity such as spikes in the background of her EEG, less seizure activity and more localization of seizure activity. 

Nothing was any better. 

If anything the EEG appeared worse and the brain activity was visibly slower then it was in the past... 

therefore, indicating that Izabelle's rare epileptic condition was progressively getting worse....

Between three adults, we decided that the KETOGENIC DIET which we gave a long hard try since May... was clearly NOT making matters better... and the new tonic clonic/generalized seizures that we were seeing as of late were not a fair trade for the five small 30 second complex partials as we were used to seeing before. We are starting the titration off of the Ketogenic Diet as of today. 

In three weeks: 

NO MORE WEIGHING FOOD! 

WE CAN GO OUT TO EAT! 

I CAN COOK FOR BOTH OF US AGAIN!

I WON'T BE BOUND TO THE KITCHEN FOR HOURS!

NO MORE STUPID SUPPLEMENTS!

Izabelle has:

• Been failed by eight or nine pharmaceutical drugs and the ketogenic diet. 
• Endured brain scans (Countless EEGs, 2 MRI, 2 ICTAL and 1 INTRA-ICTAL spects and 1 PET) and haven't located any abnormality of the brain. 
• Gone through a genetic screening which indicated two genetic variants that have no research to back up possible links to a known epilepsy syndrome. 
• Experienced a worsening in seizure symptoms instead of an overall improvement.
• Has been failed by the Ketogenic diet. 
• Undergone multiple psychological tests that indicate a severely damaged working memory. 

Our next options...

Medications: 

We discussed other medications... there are five options. We are going to retrieve the names of all of them and look at the common side effects... because... really, at this point, even if we experience less seizures, we expose Izabelle to horrible side effects, and vice versa. The next medication trial will be Banzel which has a primary side effect of drowsiness... We are going to wait for this until later.

Vagus Nerve Stimulator:

We discussed this option but decided against it because the invasive surgical procedure has less proven effectiveness then the Ketogenic Diet. 

Medical Cannibus:

We discussed medical Cannibus as therapy, Dr. Morrison recommended jumping straight to it, and gave us a prescription on the spot. This therapy may include Izabelle ingesting a gummy, caregivers adding a syrup to food or administering a tincture. CBD, the non-narcotic part of the cannibus plant has been proven to kill cancer cells, stop seizures, aide in pain management, among others. This was our last therapy on the list to use. We will go back to the others if needed. 

It is very possible that Izabelle may never become seizure free. We are praying that the Medical Cannibus has the same effect on Izabelle as it has on other children around the world.  

http://www.epilepsy.com/make-difference/advocacy/advocacy-priorities/epilepsy-and-medical-marijuana

We also discussed learning difficulties, attention difficulties and memory issues. At this point, we are going to stop testing, wishing for more, and feeling defeated by Izabelle not picking up on the new knowledge we try to impart. Dr. Morrison said that the only way he could see her progressing academically would be if we could get her seizure free or find a medication with less detrimental side effects. We just want to let her be for now and try the Cannibus. We will reassess the situation later, but it is a possibility that Izabelle may never progress cognitively past the age of five. Our last test will be a Psychiatric eval. The goal being to use information gathered to locate resources to make Izabelle's life more comfortable and assessable. It is very possible that Izabelle has ADHD, OCD and/or Autism. Despite her diagnosis(s), we all concur that adding anymore medication is completely out of the question. We want to honor our spirited child for who she is, exceptionalities and all. 

We have started a Go Fund Me page to help with past medical debt. 

Please visit the website to make a donation:

http://funds.gofundme.com/dashboard

http://funds.gofundme.com/dashboard

Thanks!

Dec 2nd EEG

Here we go! 

End of Titration

Over a week ago Izabelle reached the end of her Titration off of Treleptal. At the same time, we removed the stimulant Vyvanse. Although hyper and seemingly out of control at times, it seems we have our Izabelle back personality wise. She is bubbly, creative, loving and a joy to be around! 

The downside of the titration though, is that Izabelle is still seizing quite often and for longer durations. One night last week, she had three, large, almost tonic clonic events. Learning has not significantly improved yet, we don't believe. It may take a bit longer to see cognitive gains. 

We have an EEG set up for Tuesday in Portland. I am really crossing my fingers for answers. 

As I said in a past post:

"Both Dr. Bergin of Boston Children's Hospital and Dr. Morrison of Maine Medical Center concurred that the irregularity and new severity of Izabelle's seizures were due to harmful side effects from the medication Treleptal. Treleptal was the first seizure med that actually seemed to work for Izabelle when she was first diagnosed at age four. The doctors feel that Treleptal has also made Izabelle's EEG's harder to read by creating fragments/irregular electronic discharges that resemble mini-seizures in the background. Basically, Izabelle's little brain has been having irregular activity, 24 hours a day, even when she isn't having a full blown seizure. It is our hope that once off of treleptal, that not only will the ketogenic diet work better, but seizures will become more centralized to one location in Izabelle's brain. Therefore, possibly allowing us the chance to revisit the idea of surgery. The EEG will look more clear and the techs will be able to determine more easily what type(s) of seizures Izabelle is having. The horrible side effects will go away, hopefully allowing Izabelle to develop at a more developmentally appropriate rate."

So... on Tuesday-Wednesday we are hoping that the EEG will tell us weather or not to continue Treleptal. If it is determined that we need to keep her off of Treleptal, we may need to add another med to stabilize her... The diet did work to cut seizure activity in half between May and September but the diet isn't strong enough, it seems, to continue decreasing seizure activity without seizure medication. 

We have a follow up with Dr. Morrison on Dec 10th to discuss the results of the EEG. 

Seeking Superhuman Parental Endurance

Somedays are harder then others, but it's going to require a ton of extreme parental endurance to see Izabelle through this phase of treatment or 'medical experimentation'. Let's see how much we all can handle without going a little 'coo coo' ourselves. 

As of today, Izabelle will be completely off of Treleptal. Last week, Izabelle gave everyone her best fight again with regards to eating her food and taking her meds. After a visit to the pediatricians office, it was decided to take Izabelle off of her ADHD stimulant in order to spur appetite. The diet continues to get harder and harder to administer. I had to re-create meals as well as change meal spacing and portion size to get Izabelle to eat all her food. You see, If she chooses not to eat, it is basically a medical emergency because her body is in ketosis. 

Meal time has become a chore, no longer a 'joy' for Izabelle. This week my challenge was to take the stress out of eating. I split all meals into two equal halves. Each meal has the perfect ratio so we don't have to time consumption. Eating in thirty minutes was just a huge pain. We are using the 'first/than' method  at MaMa's house. First we must eat, then we can play, etc... It's going really well. I just wanted to quit the Ketogenic diet this week. It's soooooo stressful!!! Plus, I'm still unsure of its effectiveness. With that said, I would like to see Izabelle through at least the end of her medication trials until we decide if the diet is actually helping her brain. It is true that seizure frequency has gone down but the intensity of the seizures is 10 fold. I still believe a violent convulsive/paralyzing seizure wreaks just as much havoc as five small staring seizures. In addition, we have not seen any academic gains during the time on the diet until recently. Izabelle may be starting to read again... which is so exciting... although possible to change any moment. This can be because of the wean off of treleptal, an increase of her medication zonisamide, etc... 

Izabelle's seizure disorder is such a mystery. There doesn't seem to be any rhyme or reason why things happen as they do. 

Here is part of a medical update I sent to Izabelle's educational/behavioral team: 

MEDICATIONS

- Izabelle will continue the titration off of Treleptal. She will be completely off the medication as of Monday night this coming week. The wean will still continue for a couple weeks or so longer because Izabelle has been on this medication for three years. The doctors are not certain when the medication will completely be out of her system. It may take longer. 

- Izabelle will stay at an extra 25mg of Zonisamide until further notice. 

- Izabelle will abstain from taking her ADHD medication until further notice to spur appetite. This morning she took her meds and ate quite easily. I do feel though that she requires a something to help monitor impulsivity,  behavior and maintain energy throughout the day. We will look into other options for this. 

SEIZURE DATA: 

11/6/14-11/10/14 Izabelle had 8 seizures lasting between 40 seconds and 5 minutes.

10/29/14-11/5/13 Izabelle had 13 seizures lasting between 32 seconds and 3 minutes.  Out of the 13 seizures, most were of the more intense screaming kind, therefore, I notified Boston children's and Zonisamide was upped 25mg. This seems to help. 

WATCH OUT FOR:

- Longer duration of seizures

- Higher frequency of seizures per day

KETOGENIC DIET:

- Izabelle will be going to a 7 small meal schedule at Mom's house consisting of three pairs of 1/2 portion meals and one snack. She will eat these small meals at: 6:45am, 9:15am, 11:30am, 1:30pm, 3:30pm, 5:30pm and 7:30pm. 

- No time outs will be used in relationship to eating at Mom's house or by Full-circle BHP services. 

- All Keto food prepared at Mom's house will be all-in-one which means that all the fat, protein and carbs are evenly distributed. We have permission from the dietitian to offer Izabelle remainders of these all-in-one meals at a later time. Izabelle must eat all the food by the end of the day. I have been using the first/than method for Izabelle and positive reinforcement for drinking/eating/med-ing when prompted. 

- We will stay on the diet at least until Izabelle's titration schedules are complete and we receive data from both neurologists confirming suspicions that one or both of the seizure medications are inhibiting Izabelle's learning or making her EEG appear worse. 

- I am attempting to schedule a 24hr EEG in the next three weeks at Barbara Bush children's hospital to see if we are able to see a difference with the removal of Treleptal. 

- If no difference is noted, other steps will be taken to isolate the cause of Izabelle's academic and cognitive regression. 

- Meanwhile, Dale, Miri, the doctors, and I will decide weather or not the Ketogenic Diet is actually helping. The decrease in seizure activity this week could be because of the addition of Zonisamide, who knows...

- Seizure tracker.com. Both families are now using the website. A pathways Ed tech will be working on setting up a school iPad with the app so that we may video a longer version of one of Izabelle's newest form of seizures. 

PSYCHOLOGICAL:

-As you heard, we are quite disappointed with the inadequacy of the data provided within Izabelle's neuro psych eval by Dr. Cecilia Kinast. I am seeking a second opinion. Dr. Bergin of Boston Children's will be looking over the neuro psych eval and will possibly refer us to a professional there. Izabelle's pediatrician, has referred us to AOS 93's psychologist. We are hoping that the school district will pay for another Psy. eval ASAP. The doctor will be drafting a letter and will send it directly to the Special Ed director.  

- The social worker at Boston Children's Hospital has suggested that Izabelle see a social worker/psychologist/

counselor because she may have some emotional needs that may be caused by her medical condition/hospital stays. etc. I have seen a counselor on occasion myself to cope with the emotional stress/trauma involved in parenting a child with medical needs such as ours. It has been quite beneficial. I see this as a strength, not a weakness. 

I will need some superhuman mamabear powers to get through this week. Prayers are appreciated! 

Blended Family Update/Tapering Medication

It has been a very, very long time since I have written. 
Life has been a whirlwind of ups, downs, changes for the better, personal growth and precious new beginnings. 

Blended family update:

This is a picture from our most recent blended family portrait session. I am all the way on the left, Izabelle, Miri (Izabelle's awesome Step Mom), Leaf (Izabelle's half brother) and Dale (Izabelle's dad). 

We are like a well oiled machine working the ketogenic diet for Izabelle's highest good. Communication is key. We text, call and speak in person regarding medications, menu, supplements, fluids, ketones and seizure activity. We even have a shared Google Calendar for custody and medical appointments. Miri, Dale and I share the load with prescription pick up/drop off, school functions (Miri even joined the school PTA), custody and medical appointments. I have even babysat for baby Leaf on occasion. He is such a special boy and the light of our Izabelle's life!

Tapering medications:

About six weeks ago, Izabelle's seizures worsened in severity. The seizures began to last longer and become very intense with new symptoms such as loud guttural screaming, eyes rolling back in the head, becoming unconscious for extended periods of time and long postdictal periods. Not to mention, Izabelle's cognitive ability was drastically changing for the worse. On September 29th, 2014 Miri, Izabelle, Leaf and I headed to Boston Children's hospital to have a Ketogenic follow up appointment. It was there that my voice as a mother was heard. We decided to up Izabelle on the diet from 3.25-1 up to 3.5-1 to help lessen seizures and start tapering off of Treleptal. I was worried that they weren't going to let us do the both at the same time… but they did!

Both Dr. Bergin of Boston Children's Hospital and Dr. Morrison of Maine Medical Center concurred that the irregularity and new severity of Izabelle's seizures were due to harmful side effects from the medication Treleptal. Treleptal was the first seizure med that actually seemed to work for Izabelle when she was first diagnosed at age four. The doctors feel that Treleptal has also made Izabelle's EEG's harder to read by creating fragments/irregular electronic discharges that resemble mini-seizures in the background. Basically, Izabelle's little brain has been having irregular activity, 24 hours a day, even when she isn't having a full blown seizure. It is our hope that once off of treleptal, that not only will the ketogenic diet work better, but seizures will become more centralized to one location in Izabelle's brain. Therefore, possibly allowing us the chance to revisit the idea of surgery. The EEG will look more clear and the techs will be able to determine more easily what type(s) of seizures Izabelle is having. The horrible side effects will go away, hopefully allowing Izabelle to develop at a more developmentally appropriate rate. 

We have made it halfway through the titration schedule. Izabelle has been on the 3.5-1 ketogenic ratio for about two weeks. Seizures continue to decrease in not only frequency but also in duration and severity. Izabelle is beginning to use more vivid language to convey her ideas and is sounding out words while reading again! 

It is our hope that once we wean off of Treleptal and get Izabelle more stable, we will also begin to taper off her second seizure medication - Zonisamide… 

All of our supports are in place. The new school Izabelle attends is fully equipped to handle her seizure activity and the diet. They have orchestrated a beautiful seizure action plan. The Epilepsy Foundation of New England came to do a presentation on October 10th during a teacher workshop day. I love the school nurse who just happened to be by my bedside during my labor for Izabelle. We have also secured a Behavioral Health Professional, Miss B, to aide with childcare/behavioral support in my home before and after school 3-4 days a week. We will have respite care this Friday night so the adults can celebrate Halloween. Life is manageable. 
Finally.