Week 3 on Keppra

We decided not to up Ella’s dose last week (she should have gone up to 3 ml’s).  After the tantrum episode I was a nervous wreck that going up would produce another bad weekend.  We called and checked in w/ our dr. on Monday to ask if we could stay at 2 ml’s and see how she does.  He agreed that 2 ml’s would be fine.  So that is where we are and things have been really good.  Her behavior is back to ‘normal’ and no sparkly arm in a while.  She is still waking up 1-2x per night just crying out for us and we are trying to figure out if it is habit, side effect of med (waking up feeling sad so crying out) or something else.  We did have one night last week where she didn’t wake up, so that is good AND she has been sleeping (or at least staying in her bed) till 7am so that is good also.  We are used to having a FABULOUS sleeper…since she turned one she goes to bed around 7:30pm and sleeps till 7am and we usually never here a peep (until the sparkly arms started in March 2010).

Hoping to find a new ‘normal’ here in our house!

Week two: Keppra- 2 ml

Week one (1ml at night) went fantastic. Luckily Ella loves taking any ‘medication’ (mostly vitamins) so it is easy getting her to take the Keppra. Week one was uneventful…no seizures, one episode of sparkly arm at nap (when she no longer has meds in her system) and NO side effects!!!

We started upping the dose on Fri July 9th. She did fine the first night/day but the second day was not fun. She was very ‘tantrummy’ (making up my own word) today. Not her usual self…the screams when we had to come inside after playing outside were the loudest I have EVER heard come out of her little body. Nothing calmed her down; and she is usually very easily distracted/calmed down when things are not good. It was really really really hard to give her her evening dose tonight. We just don’t want to medicate our little girl. I HATE THIS.

Meds started

We have talked it out.  Researched.  Talked to our pediatrician.  Thought, prayed and finally decided to start the Keppra. We SLOWLY wean her onto the meds.  Starting w/ 1 ml (100 mg) at night for a week.  Then over the next two weeks increasing to her prescribed dose of 3 ml (300 mg) per night.

We will also go see an integrative neurologist to talk about some more holistic things we can do to help Ella’s body/brain w/ the stress of the spikes (she could/is probably still spiking at naptime-since no meds on board during the day).  Also going to see a chiropractic neurologist and homeopath.  ANOTHER summer of doctor appt’s  😦

Joe and I are so holistically focused and medicating our daughter every single day for probably a minimum of two years is really really hard for us to accept.  We strongly considered trying the more holistic route first…but she is spiking so much at night and we are very nervous about cognitive delays being caused by those spikes.  Probably nothing to worry about in terms of her learning, memory BUT another gray area in the land of BRE…they really don’t know.

So far, so good.  The side effects of this med are scary and we hope she has NO side effects or if she does she will sleep right through them.  So far we have noticed no changes at all…except for better night sleep.  Since the seizures Ella has been waking almost every day sometime around 5-6:30am.  No big deal as we can go in and either deal w. her ‘sparkly’ arm (tingling that may or may not be a mini seizure or just BRE symptom, another gray), or we deal w/ whatever her complaint is and she goes back to sleep till her nightlight goes off at 7am.  The past three nights she has slept till 7am even w/ Joe sleeping on the air mattress on the floor next to her!!!!!!!!!!

So the next big hurdle will be next weekend when we increase her med’s.  Oh and MRI we were supposed to get.  Our doc’s said since they are 95% sure this is BRE we do not need to have the MRI.  They really did not want to expose her to anesthesia unless absolutely necessary.  yah.

second opinion and clear diagnosis

We go into NYC for our second opinion.  Dr. Devinsky at NYU.  We see two doc’s at NYU comprehensive Epilepsy Center; they work in a team.  They think her EEG’s are a bit atypical for BRE (Benign Rolandic Epilepsy) and want to do a longer EEG to get a better idea of what is happening.  We can do a home EEG (how cool!).  We go into NYC on a Friday, have Ella hooked up.  She is attached to a mini computer which is recording her brain activity for 48 hrs.  She does GREAT and never complains even though she has 20+ wires attached to her head and hanging off her head ( Joe calls her Rupunzel!).   We keep the ‘computer’ in her backpack which she wears or has right next to her all the time.  By Saturday she is used to it and able to carry on about her day w/ all this ‘stuff’.  I really am amazed by her patience w/ it all.  We unhook her on Sunday and Joe drives into NYC early Monday to drop off and have the EEG read.

We here from Dr. Devinsky on Wed to say 95% sure it is BRE…the better diagnosis.  We see dr’s on Monday and think they will say no meds needed.  We are wrong- sort of .  One doc does not think she needs med’s right now.  Although he calls this a very gray area and feels like we have to do what feels right/comfortable for us.  Dr Devisnky comes in and says that he recommends medicating her at night to calm all those abnormal spikes.  Also saying that there is no way of knowing if the next seizure will be much worse than the first two and then cause damage that cannot be fixed…scary.  Also said although she is sleeping fine it is not as restful as it should be.  He likened it to trying to sleep while someone is continuously poking you in the same spot  A   L   L  night long.  You could sleep, but you might wake more, toss more, etc.  Not very restful.

Decisions to make.  We leave w/ prescription for Keppra, a headache, a heavy heart and a BEAUTIFUL, happy, smart little girl.  It could be so much worse.

Abnormal EEG + second seizure= admitted

We go for Ella’s EEG at end of May.  It is quick, only about 30 minutes.  Her results are abnormal.  No seizure activity, but some abnormal spikes.  The neuro wants to admit her in the next week or so to do an overnight VEEG.  So we get that tentatively scheduled (they don’t tell you if you are getting a room till the day you are scheduled to come-depends on how crowded the EEG unit is).

Coincidentally on the day she is scheduled to be admitted we wake up to another weird cry coming from Ella’s room (6:15am).  She is having another seizure.  I grab the Diastat on the way into her room and we start timing the seizure.  It lasts less than a minute and she comes out of it much better than last time.  We don’t have to adminster Diastat.  We call and chat w/ neuro who wants to confer w/ the his partner who we have been seeing.  We finally get a call back mid morning and the EEG unit is very crowded so we need to be admitted through the ER so we have to bring her in and go through another ER visit…ugh.

We head to ER and are admitted to unit late afternoon.  Ella does GREAT loving all the doctor equipment and is playing dr. non stop.  She gets hooked up for monitoring, eats dinner and goes right to sleep without any fuss at all (she is so good).  Joe and I hang out in the hallway right outside her door!

The next morning we talk w/ our neuro and an epileptologist (neurologist who specializes in epilepsy).  Her overnight EEG was full of abnormal spikes…about 80% of her night was abnormal.  They are pretty certain she has Benign Rolandic Epilepsy.  She has a very good chance of growing out of it by puberty.  It comes w/ infrequent nighttime seizures.  Usually not a condition that warrants med’s; however her frequents spikes are cause for concern.

Unfortunately there is not a lot of concrete answers about this condition.  Are the abnormal spikes causing damage?  Maybe, maybe not.  Are the seizure causing damage…usually not unless they are longer than 20 minutes.

The docs want to put her on a medication called Keppra.  We are hesitant, want to do our own research and want a second opinion.  We then wait to have an MRI done- which never happens because we keep getting pushed back, it is late and we just want to go home.

normal day…terrible night—the beginning

We go to sleep on Friday May 8th 2010 after a very normal day. Both kids healthy and asleep. We are woken at 3am to a terrible cry coming from Ella’s room. When we get into her room she seems hysterical, shaky and sounds ‘off’. I turn on the light, Joe has her and she is shaking and crying and NOT at all able to focus or answer us. I call 911. She comes out of it a bit in a couple minutes…but she seems off. Her right hand is still convulsing. Her right arm is limp. She cannot sit up. Her eyes are fixed right. She is slurring her words. She complains she is dizzy.
Police arrive, paramedics arrive, assess and Joe and Ella are off to hospital, while I wait for mother in law to come and watch the baby.
At ER…takes a long time to see dr. Ella throws up and FINALLY falls asleep around 5am. We are seen, bloodwork, CAT scan and chat w/ neurologist who tells us everything looks fine and it is probably a one time seizure. About 3-7% of population has one unexplained seizure in their life.
We leave around 9am w/ prescription for EEG in 2-4 weeks.
The rest of the day is normal, except for a three hour nap by our almost 4 year old.
We are hopefully this was a one time incident.