Almost TEN years old

It has been a while since I’ve updated the blog, mostly bec things have been so good.  We had an increase in sleep walking over the winter.  Christmas time/early winter  (2016) seems to bring on changes.  I almost consulted w/ new neuro (more local) but decided to wait and I am glad I did.  Towards the end of winter the sleep walking decreased and then stopped.  She was getting out of bed several times a week and now maybe ‘walks’ 1-2x per month.  It is crazy…..

Ella will turn ten in August.  She is finishing up third grade.  She plays piano, dances, loves to write and read.  She is a good friend, a wonderful daughter and great sister.  We are so lucky and blessed.  We  still pay close attention to sleep, scheduling, diet/nutrition, hydration and she is still has a list of supplements she takes daily.   All is good.

THANKS for reading.

Sleep walking increase

So during the fall 2014 (8 yrs old) Ella’s sleep walking started to increase.  Just a little bit each month but then by November we were up to 4-5 episodes each week.  These episodes were mostly around same time 1-2 hrs after falling asleep.  Almost like clockwork at 9:15pm she would wake and walk into bathroom or her brothers room or just walk around her room.  It was concerning just because you never know…will she ever seize again????  Then she started going down the stairs and started to sleep walk later int he night when we were already alseep.  That was VERY scary because I certainly did not want her wandering around in the middle of the night while my hubbie and I slept.

We decided to try essential oils to see if they might help decrease the episodes.  It has been helping so much.  We diffuse lavendar in her room every night and put an oil called ‘peace and calm’ on her feet before sleep.  We’ve been doing this for approx 2 mos and and have gone from 3-4 episodes each week to maybe 3-4 episodes IN TOTAL over the past 6-8 weeks.  Very happy.  Using Young Living oils.  Also tried a product by Bach (homepoathic) called Sleep Rescue and I think that helps her as well (http://www.amazon.com/Rescue-Sleep-Liquid-Melts-count/dp/B004151F8Q/ref=sr_1_1?ie=UTF8&qid=1425332851&sr=8-1&keywords=bach+sleep+rescue).

8years old

Ella turned 8 in August, It’s been 2 years since weaning off Keppra. It has been 4 years since the last seizure. I still worry about them every single night. She is in second grade. She is a great student, well liked, and doing so well in school. We are still taking lots of supplements for mitochondrial support.

She still gets the occasional sparkly limb. She has taken up sleep walking since the Keppra wean. That happens a few times per week. The other morning she wakes and tells me 40 min after wake up that she felt shaky for a while after waking (but she ate, read and talked to me during that time and I noticed NOTHING). So….we still have some ‘stuff’ happening which for most parents would not be very alarming at all but for us it keeps those seizures in the forefront of our mind.

We keep all the families out there struggling w/ BRE in our thoughts and prayers. It is a very scary disorder.
THANKS for reading!

Two years off Keppra, 4 years seizure free

Ella was taken off Keppra in July 2012, after being seizure free the entire time on meds. She is doing great. Her night time ‘weirdness’ has decreased to almost nothing. When I ask her she says she still gets her sparkly arm occasionally but she doesn’t call out to us anymore for help. Her sleep walking which started after we weaned off meds only occurs if there is some stress or she didnt sleep well the night before. We are still very very strict about bedtime, routine, diet, supplements and we rarely (if ever) let her stay up late or get less sleep. Academically she is doing super and loves school. She has an awesome memory and loves playing piano and running track. So happy BRE is behind us…..we hope it is behind us forever.

Happy 6th Birthday and EEG results!

Ella just had a wonderful and very very busy weekend celebrating her 6th bday.  We also were celebrating the first bday in two years off anti-seizure meds.  We also were celebrating a BEAUTIFUL, CLEAN, NORMAL EEG.  The EEG was done 10 days after we finished the weaning process.  Neuro was really happy w/ results and obviously so are we!  

We go back in 3 months for another ambulatory EEG and HOPE and PRAY it is just as good as this last one.  Ella’s energy level is SO much better off the meds and she also seems a bit less emotional and easy to frustrate.  Looking at her now I realize her tiredness/fatigue was definitely a side effect of keppra.

What a wonderful birthday.  What wonderful results.  so happy!

Done weaning….and weaning process= sleep walking

After two years on keppra we are finally weaning off.  The process took a little less then a month.  It is extremely nerve wracking.

 Ella has started sleep walking.  It has happened 4-5x since the weaning process started.  Always around the same time 9pm-10pm (she falls asleep sometime between 730pm-8pm).  The scary thing about the sleep walking is that if the seizures start up again what happens if she is out of her bed??  One time we even found her on the stairs (our fault for not closing the gate all the way).  So now that the process is complete we have to be vigilant w/ staring at her monitor over that 9pm-10pm hour.  We even have a audio monitor on as well and somehow she slips out her bed very very quietly!

The two seizures she had before Keppra were NOT at that 9pm hour but were instead much later in the night/early morning (3am and 6am).  We go for ambulatory EEG in a week and then see the neuro in early August.  I hope and pray all day long that the next EEG is clean and that the sleep walking is just her body reacting to coming off meds (that is what neuro said when I called her!).

Ella will be SIX on 8/3!  She is doing so well.  Growing, learning, laughing, playing.  She is a beautiful little girl who fills up my heart and lifts me up each and every day.  We are so lucky to have been blessed with such a smart, happy, wonderful daughter.

thx for reading.

TWO YEARS SEIZURE FREE!

So after two years seizure free you can try to go off your anti-seizure meds.  We are at that point.  We were admitted to NYU Medical Center to have our 48 hour VEEG done.  What I wrote below about taking her off Keppra for one night (in hospital, while hooked up to EEG) did not happen.  Instead, we had a standard 48 hour VEEG done (our 5th since the first seizure) in the hospital.  It was annoying because we were in a double room and got very little rest the entire time there.  So of course that is a little nerve wracking since her DISORDER is somewhat caused by NOT ENOUGH SLEEP!!!!!!!!!!!!!

The good news is her VEEG was normal and we can start weaning off the Keppra!  YIPPPPEEEE!  Our weaning schedule is supposed to be: down from 2ml to 1ml for 10 days and then .5 for ten days and then done.  We will do it a little differently (after consulting w/ our integrative neuro who told us to go as slow as possible):

1.5 ml for a week, 1 ml for 10 days, .5 for 10 days and then .5 every other day for a week or so.

If you are reading this now, please send us healthy brain vibes~~~~~~~~~  We want to be done w/ this disorder.

We are praying for the families we met at the hospital who have way bigger mountains to climb then we do.  I’ve written it before (on Joey’s blog);  any time spent in a children’s hospital/pediatric floor is incredibly draining, humbling, exhausting and emotional. You cannot begin to comprehend until you have done  w/ your own child- it is so hard. Going to hug my husband and  watch some mindless TV to get my mind off it all!

thanks for reading!

Spring 2012

Looks like we might be going off Keppra!!!!!!!!!!!! We will be two years seizure free in early June of this year. The ‘usual’ rule of thumb is two years seizure free= wean off meds.
Ella is still having intermittent ‘sparkly’ limbs in the middle of the night. They happen very infrequently now. We had some in October 2011 and then had a pretty long incident in March 2012. She has had these while hooked up to EEG but they didn’t register as an event. Docs have always thought they were probably very tiny very deep seizures. Soooo I am a little confused. I really really want her off the meds but am concerned bec of the sparklys…???

The plan right now is to admit her to hospital for 48 hour VEEG while taking her off the Keppra for first night, do some testing while she is a bit sleep deprived. if EEG is normal the entire 48 hrs then she goes home w/ a weaning schedule. If it is not normal we re-assess.

Still trying to take this all in. So happy the Keppra has worked so well for her and the side effects have been minimal. We’ll see.

Autumn 2011 update

Ella is doing really well. She had another ambulatory 48hr EEG done in ealry Sept…results came back perfectly normal (Thank You Keppra!). The checked her blood levels of Keppra (for the first time) and those were on the low end. Since she is doing so well we decided to leave everything just the way it is.

Our integrative neuro wants to do some additional testing (that is VERY expensive). Testing her for things like heavy metals, carcinogens and other some other chemicals. We will probably do the heavy metal test since it is the least expensive and her lead levels have always been at a 3 or 4, which is something that has always bothered me. So we will try and get ourselves in gear to get that test done. in the meantime she is on MORE supplements and is not that happy having to take all her ‘vitamins’ 4 x per day 😦

Ella turned 5 in August and could have gone to Kindergarten. We decided to hold her back for a year and have her do another year of nursery type school. We started at a new school-Montessori- and she is loving it. The BRE and/or the Keppra makes her tired and she still naps most days, therefor it didn’t seem right to start her in a 7 hour kindergarten pgm right now. Another year of half day school was the best choice for us.

Happy Autumn. thanks for reading!

Our Doctors!

I have had so many questions lately re: our doc’s…

Holistic Pediatrician
http://www.wholechildcenter.org
Dr. Larry Rosen

Neurologists:
Dr Devinsky and Dr Ray at NYU Epilepsy Center

Integrative Neuro:
Dr Shetreat- Klein
NYC
http://www.brainmending.com