Thursday, December 18, 2014
I am her champion, her warrior, her protector, her biggest fan
Tuesday, December 16, 2014
Theft of Time
Saturday, December 13, 2014
Huge changes, huge relief and coming to acceptance...
- 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:
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
Tuesday, December 2, 2014
Sunday, November 30, 2014
End of Titration
Monday, November 17, 2014
Seeking Superhuman Parental Endurance
Tuesday, October 28, 2014
Blended Family Update/Tapering Medication
Life has been a whirlwind of ups, downs, changes for the better, personal growth and precious new beginnings.
Blended family update:
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.
Saturday, May 31, 2014
United Front
Monday, May 26, 2014
It takes a Village
Thursday, May 22, 2014
She's a CHAMP!!!
Tuesday, May 20, 2014
Ready for bed...
Sunday, May 11, 2014
No breaks on Mother's Day
Tuesday, April 22, 2014
Ambulatory EEG time
Monday, April 21, 2014
Like magic!
Friday, April 18, 2014
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!
Monday, April 7, 2014
Change is good :)
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.
Monday, March 31, 2014
Letting it all sink in...
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!!!
Thursday, March 27, 2014
Time to change schools...
Monday, March 24, 2014
The road narrows...
Monday, March 17, 2014
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.
Sunday, March 16, 2014
More med changes...
Tuesday, March 4, 2014
Put yourself in my shoes...
Keto consult.
Monday, March 3, 2014
Moms understand best
Sunday, March 2, 2014
Hard week now back to Boston
Tuesday, February 25, 2014
Broken down and broken hearted
Friday, February 21, 2014
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...
Monday, February 17, 2014
My strong girl :)
Sunday, February 16, 2014
Fighting the big fight!!!
- 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.
- 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.
Sunday, February 9, 2014
Mamabear to the rescue!
Sunday, February 2, 2014
More direction ->
Thursday, January 30, 2014
The world is crashing down…but life must go on
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...