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. 

United Front

God truly works in mysterious ways. The onset of the ketogenic diet was nothing I could have ever imagined... I had no idea what an abrupt life change this would be and also that it is impossible to do alone. Izabelle has still been refusing to take medicine( new form since keto )from me and others I have had at the house since last Saturday night. On Wednesday, Izabelle refused to take her morning medications before school from myself and a good friend. Our back up plan was to have the school nurse give Izabelle her meds at school. While teaching fifth grade art in my classroom I received a phone call from her school. Izabelle had refused her medication from the school nurse even with incentives such as visiting good friends and a prize box. I left as soon as I could and set up a plan with Izabelle's other half (her dad and step mom) so they could give her the medication for me. We met in a parking lot half way and they administered it with less struggle then I have been facing. Izabelle and I returned home. I was on the phone with her step mother when Izabelle began to go in and out of seizures... Until she froze and wouldn't come out of it. I had to administer diastat. She didn't come back right away so I called 911 for back up. I had no idea that missing a medication by four hours would create a 25 minute seizure. Izabelle came to before the ambulance arrived. They checked her out and stayed until I could locate a back up Diastat for later. I brought Izabelle to her Dad that night. On Thursday, Izabelle refused again. I broke down crying and knew that at least for now it was best if she stayed at her fathers where she would be assured to get her medications on time at least until our next appointment on Monday. 

It is so hard to be in this place right now. I think Izabelle associates me with the trauma from the hospital stay and almost blames me for her life turning upside down. My eyes have been peeled wide open. She behaves so much better at her Dads house. I also think that two parents are definitely better then one at this point. I've been too emotionally drained by all of these med changes and now the diet trial. I'm working to recharge and take on this challenge. Tomorrow morning I'm going to show up at Izabelle's Dads house and start a slow process of reintroducing Izabelle to taking her medication from me gradually with the support of both her father and step mom. I never thought anything like this would ever happen. Just trying to stay positive and remember how hard I have fought to get Izabelle where she is today. In a way I have held on so tight and plowed through, biting my lip through all of this on my own. It's nice to have help from Izabelle's other parents. Three is better then one. We are uniting for the sake of our child and I'm beginning to think this is what she has needed all along. 

It takes a Village

This has been the most trying week... I don't have correct adjectives to describe all the emotions I have been feeling. I have had to submit to the fact that there is no humanly possible way for me to do this all on my own. This week all sides collided to give Izabelle the care she needs... Myself, her father and her step mother are just beginning to work together to provide what Izabelle needs as a united front. There is no way this diet is going to work without all of us pulling together. She is what's important. Her needs her health her betterment. This diet is such a risk and isn't easy in the least. As soon as we got home power struggles commensed over things that once were easy. It's been madness.

 I started to loose myself...forgetting to put my own oxygen mask on first. Not eating, sleeping or doing things that make me feel whole and complete. I had to ask for help and let go of my ego. At the end of the day I know that my daughter is loved and that I have done everything in my power to ensure her health and safety. It takes a village. 

She's a CHAMP!!!

Izabelle has made it through the first two days at the hospital like a champ. Her father and I took our first class in the diet yesterday and began to prepare meals for her at lunch. So far Izabelle has eaten all the food presented to her. She hasn't even asked for snacks or more food! Medication administration is still the biggest challenge but I'm working out the kinks. Her body is very close to being in ketosis which is the goal. She has had to take blood and urine tests daily but she amazes me with her bravery. The diet will prove to be a challenge as it is so restrictive down to brand names and measurement. Thank god I was always great at math!

It is so nice that we are able to leave our room frequently. Izabelle is making friends with everyone! 

Ready for bed...

We arrived at Boston Children's today 50 minutes late for our 1oclock admission for the ketogenic diet inpatient stay. I think I will arrive late on purpose next time because we didn't get a room until 5pm. Izabelle enjoyed at least two hours on the playground and made new friends as did I.

Izabelle had her first 'egg nog' or keto shake around 6. She loved it. I kept telling her it was just like mommies frappes.

The worst part came when we had to wait until 9:30pm for Izabelle's meds to arrive. Izabelle's medications have to be in dry form now instead of suspensions due to carbs. Our nurse and I thought we would try mixing the medication in fruit 2 o because we didn't have access to a scale for mixing it with apple sauce and butter as the dietitian noted. Izabelle was out of sorts, overtired and when she realized how bitter the medication was she spat it all over us. Our nurse looked mortified as she knew how long it would take to re order the medications. Looking back at it, the mixture must have tasted disgusting in that consentrated form. Luckily the doctor allowed me to use the meds I had on hand and we had success with an unmeasured amount of applesauce. Tomorrow's a new day. She's in bed now and I'll be soon after. 

No breaks on Mother's Day

For almost two weeks now Izabelle underwent a trial for the medication Phenytoin commonly known as Dilantin. There were not serious side effects until Izabelle reached her goal dosing by Saturday of last week. She was reported to have upwards of six seizures last Saturday by her dad. By Monday, Izabelle was complaining of stomach upset and fell asleep during class at school. On Wednesday, after a field trip swimming she fell to the floor holding her stomach in pain. I left work early again and fetched her in Wiscasset. Wednesday afternoon she had two clusters of seizures that lasted 5+ minutes. I almost administered Diastat for the second cluster. By Thursday afternoon Izabelle's neurologist suggested lowering Treleptal to lesson stomach pain. Immediately my mind flashed back a month to side effects of Felbamate and Vimpat. She and I could not handle another debilitating month of crazy seizures, stomach pain and exhaustion. I recommended we step off the new medication as our admission to Boston Children's hospital was fast approaching. We deserve a week of 'normalcy' before our life completely changes... We started the step down Thursday night. Izabelle then went to her Dads for the weekend. 

Mothers Day: 

This morning Izabelle woke to a cluster of seizures lasting 10+minutes. Her father administered Diastat rectally to stop seizures. He called me to let me know what was going on. I called the on call doctor and set up a conference call so he and I could speak to the neurologist directly. Izabelle unlike other patients experiences a direct increase in seizures instead of the opposite when coming off of medications. I told her dad to keep Izabelle laying down and let her sleep it off. We had a conversation in which I started to cry because I wasn't able to be there for her. This is not anything I wish on any parent. It's one thing to send a well child to their dads and an entirely different thing to send a child with a complex health issue away for the weekend. I retrieved Izabelle around 10am this morning and found her well and happy for almost the rest of the day. 

It's 8:58pm and I'm still waiting for her to go to bed because she fell asleep earlier in the evening and woke back up. That saying, 'a mothers work is never done.'... is the damn truth!

*Our next step is the Ketogenic Diet. I am trying to keep my expectations low so I don't get disappointed but I'm so up for the challenge. 

Ambulatory EEG time

Today was mostly a wonderful day. Izzy was to get hooked up for an ambulatory EEG in Portland today. We made a day of it. 

Gluten free bakery 

Children's Museum

Shopping

Vegan lunch

Izabelle was focused from the time she woke up: 

She had even planned on drawing the night before AND remembered at 7am when she rose.

We indulged in Gluten Free goodness but I wish we could have had a less refined sugar option. 

She rock climbed :)

Learned about caterpillars and metamorphosis!

After lunch it was time for EEG hook up number ?

Izabelle was a pro as usual! She's sleeping like a babe now and we are off to Portland again tomorrow for the unhook. New seizure med trial to start Thursday. Wish us luck!

Like magic!

Izabelle started a stimulant today geared towards ADHD. I still believe that the attention deficit is a side effect of both meds and seizure activity. I was hesitant to try this type of intervention but I reached my maximum capacity weeks ago. She has not been able to focus at home or at school for a long time. Basic self care takes ages if she actually is able to follow through. I saw almost immediate change today. I can't wait to see how she does in school next week! 

Waiting game...

The definition of my life has changed... It used to be all about MY goals and ambitions... Now it's mostly advocating and fighting for my daughter to live a normal life so she can reach her goals and ambitions... I've been doing all the right things... 

We are waiting for nursing services. I'm going through two companies now.

Setting up a date for a neuropsych eval ASAP.

Ambulatory EEG during vacation week.

New med trials next week. Including a stimulant to see if we can refocus her. I sure hope we aren't trying to medicate side effects.

Pushing for yet another IEP at the new school. 

Still working half days to give her more rest because seizure counts are still so high.

Crossing my fingers that the ketogenic diet works in May.

Just waiting for everything to fall together. 

Come on universe! Do your work!

Cuddles in between a flurry of seizures. She's sleeping in my arms now.

Change is good :)

All the abrupt changes hit me hard last week but after much reflection and hard work they have become exciting opportunities to our day to day life. Tomorrow Izabelle and I will visit Jefferson school again. I will meet with the school nurse and special education teacher to develop Izabelle's Seizure Action Plan. On Wednesday Izabelle will attend her new school. 

Other great news:

We found out last Friday that Izabelle is eligible for in home nursing support. Now we are just waiting for someone to be hired. 

We are fostering a rescued six month old puppy named Bailey. This is a baby step towards having a seizure alert dog someday.

We don't have to start a new medication trial until next Tuesday which is just after Izabelle's birthday. 

We can actually breathe. Sigh. 

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!!!

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! 

The world is crashing down…but life must go on

The world seems to be crashing down around you...meanwhile you have high hopes that your special needs child will cooperate but we all know in the real world that that is not humanly possible. My epileptic and special needs child is my barometer. If I'm stressed she's stressed, if I need space…she needs to be attached to me like glue…this also goes in the other direction…If I'm ecstatic, she's ecstatic…if I am jolly, she is jolly. 

but…
I CAN'T ALWAYS BE POSITIVE AND HAPPY AND SERENE. 
I am only human. 
I have needs too, 
I get stressed 
and I need help sometimes… 

We started the week with a five to ten minute seizure on Monday morning at 5am. I call this the 'Lucid Dreaming' type. Since, she has been struggling in school with attention, recognition and memory on a day to day basis. Somedays my child can't even stay focused enough to get dressed in the morning. 

We have an appoint in Portland tomorrow with our Portland Neurologist. He hopefully has received all of Izabelle's records from Boston Children's Hospital. We will discuss options of VNS, the Ketogenic Diet, Pharmaceutical and other natural options. I will be heading down alone again…

Something needs to change, somehow get less complicated. Here's to hoping that we can get her seizure free but that hope is slowly running out...