Side effects may include…

We’ve all been there.  You need start on a new medication and read the side effects.
Sometimes they sound worse than what you are taking the medication for.
Becca has been on more than her share of medications in her lifetime.
Most of her seizure medications have similar side effects.
After a neurology appointment last month her doctors decided to put her on
Zarontin (ethosuximide)

Common side effects include drowsiness, dizziness, tiredness, headache, stomach upset, loss of appetite, nausea, vomiting, weight loss, diarrhea, or loss of coordination.

Although often unwritten, most epilepsy drugs also come with the warning that they could make the seizures worse.

Unfortunately for Becca she struck out in a major way with this medication choice.
David and I have come to expect a certain degree of issues when starting a new medication.  It’s always rough the first few weeks.  The lethargy hits her and hits her hard, every time.

After the first week she started to go downhill.  Things spiraled after that.  Her seizures were worse.  WAY worse.  She was presenting with new seizures.
She was very uncoordinated (well even more than usual).  She fell twice within one week.  The first time it was a goose egg on her forehead.  Less than a week later it was one above her right eye.
I admit, I panicked when that one happened.  It swelled up so fast, and was right along the eyebrow ridge.  I took her to the ER just to be safe.  She checked out okay and we were actually in and out of the ER in record time (under an hour record time!).  The next day she had a black eye

She didn't want me to take her picture.

She didn’t want me to take her picture.

2014-08-28 12.48.40

Her appetite was gone.  Our little girl who loves food would push away the spoon and turn her head.  She wasn’t even as thirsty as she usually is.
She was sleeping more than usual. She just had no energy.  For her this quickly affects her motor skills and her walking declines.  She worked so hard to be able to walk on her own, it is terrifying and heartbreaking to see that skill slip away.
She started having prolonged Absence seizures.  This type of seizure is normally very short.  It might be mistaken for someone “spacing out”.  Although with someone like Becca it can be very hard to tell, it was clear the lights were on but no one was home.  She would phase in and out (more out than in) for over 10 minutes.  At which time rescue meds were given.  It would take another 10 minutes before the seizure event was totally over.  That means 20 – 30 minutes of seizing.
this happened THREE times in one week.

After the third time I called her Neurologist.  I told them I strongly suspected she was not tolerating the Zarontin.
We decided to wean her off and increase one of her other medications she was already on.

This makes the fourth seizure medication that hasn’t just not worked for her, but instead the side effects were simply horrible.
We can add Zarontin to the list of
Depakote, Lyrica and Banzel of medications that were horrible for her.
The depakote caused her irritability.  Imagine instead of just restless leg syndrome (which can be quite miserable), but instead its your whole body.  She was miserable in her own body.  Doctors didn’t believe me it could possibly be the med, since she had never heard of that as a side effect.  I demanded we take Becca off.  Sure enough problem went away as soon as meds were gone from her system.
Lyrica was horrible because she could barely walk.   Maybe if it had stopped all seizures we might have been willing to deal with her needing a wheelchair 100% of the time, but since it wasn’t causing any kind of dramatic change in seizures we nixed that one!
Banzel just caused her to sleep, and sleep and sleep some more.

Sure there have been other failed medications.  Ones that we just decided weren’t helping seizures.  Topamax, Keppra, Phenobarbital, Tegretol.

One of these days this country is going to get its act together and Medical Marijuana will be an option.  Hopefully in the near future CBD oil will be an option for Becca.

Until then we will just have to keep trying with the options available to us.

For now I’m just grateful to see my little girl coming back to me after yet another scary medication trial.  She is already more alert, active and eating better.

Baby got a new set of wheels, and a fresh new battery.

Rebecca got her new wheelchair not long ago.  It is so nice to have a new chair that fits her better.  Her new wheelchair is a Convaid Rodeo.

2014-02-26 12.53.55 2014-02-26 12.54.12
I chose the Chocolate brown as the color for her fabrics.  I figure I make covers for the seat anyhow, so I wanted to go with a more neutral color.  Pink and purple are great, but this gives me freedom to decorate year round if I want!

As you can see her chair now has a tilt feature.  This is so nice, so that when we she is tired from seizures I can just lean her back.  No more napping upright.  Also, it sits fully upright, which makes it nicer for eating.

I am sure any other special needs parent can share in the joy of new equipment!  Medicaid and Insurance rules really limit families with wheelchairs.  Rebecca will have to get 3-5 years of use out of this chair before we can consider getting her a new chair.  The process to get one approved can be 6 months or more (this one went really fast, at only 4 months).
Becca is doing well overall.  She had another MRI scan a couple weeks ago.  The scans were great!   In some ways the scan helped us figure out an important clue.  Becca has developed an odd cough lately.  She coughs like something in her throat is irritating her.
Before her MRI they turned her VNS device off (since it is a magnetically activated device you MUST turn it off before entering the MRI area).  The nurse turning it off uses the programming wand to make sure the VNS is working properly.  She got some very unusual readings, including ones that the battery was nearly gone.  Lucky for Becca, we already had an appointment with the neurosurgeon that afternoon.  Surgery was scheduled to replace the unit.
I took Becca to Duke yesterday morning and she had successful surgery to replace the VNS.  It is a rather simple surgery, an incision over the old device, disconnect it from the wires that go up and around her vagus nerve, connect in new device and put it back into her chest.  Last night she was up and about, playing as if nothing had happened to her that day.  Today is a bit of a different story.  The pain medications are making her very sleepy, and when they wear off she is uncomfortable.  That means more pain meds, and more sleep.
Since her VNS was replaced we have not heard her cough once.  David and I hope this solves the problem.  The VNS has been such a huge help for her.  She originally had it placed in September 2009.  We have found it greatly reduces the intensity and duration of seizures.  This in turn has improved her quality of life.  She spends far less time having, or recovering from seizures.  This is regardless of the fact it has not reduced the actual amount of seizures she has in a day.

 

So much life – so little to say

Catching a few zzzz on my Christmas present from Santa

Catching a few zzzz on my Christmas present from Santa


I feel badly that I have not updated this in so long. Yet how do you update a blog to say the same things over and over again? How do you write things that make you feel so utterly broken inside?

The “good” news, Rebecca’s tumor only grew a very small amount. This means we are waiting until March to scan again. We know the tumor will have to come out at some point. We originally thought the tumor was 5mm. This was based on our first phone call with Dr. Grant. However since he didn’t have the film in front of him, with the actual measurements, it was sort of a rough measurement. To him, it was just “tiny”.
In December we were comparing that scan to the old one. So we had them to measure side by side. The tumor was about 8mm when it was found. It was about 9mm in December. So about 1mm growth. This was considered good news, it means it is slow growing and not aggressive. Becca did not have to have surgery during the holidays. yeah – that is all old news. Now we just wait for March. Dr. Grant did say that it will have to come out eventually.

On the same token we continue to see an increase in seizures. I was able to get Becca into Neurology last week. It wasn’t with her regular Neurologist, but it was someone in the department at least. We’ve increased some of her meds. We’ve also changed her rescue med. (For those who understand this gunk – we increased her Onfi, and changed her from Diastat to Clonazepam). I found that because of how she gets into “trouble” with seizure activity, Diastat was just too hard to give. She doesn’t usually have true status seizures. It is more like she has what I call a “clusterfuck” – she will have back-to-back (to back) seizure events. Often a vicious cycle of complex partials and clusters of head drops, and back and forth. Since she is still conscious through all of this, giving her a tiny pill that will dissolve in her mouth will be much easier than trying to give her a medication that is administered rectally.

We are also still seeing quite a bit of fatigue. Poor girl is just so sleepy. Now before all of my good-natured friends and family jump to the conclusion that it is her shunt, we do know when she is awake, she is her normal hyper self. She also displays no other signs of shunt failure. Yet we continue to see her take 3 hour plus naps on the weekend, or any other time she is given half a chance. This all greatly affects her school performance.

The good news is Rebecca continues to show how smart she is, even though it is causing me many more gray hairs. Rebecca loves to test her boundaries. There are a few things that are off limits. Reaching over the gate into the kitchen is one of them (whether she is reaching for the trash can, or something on the kitchen counter.) She usually gets a couple warnings “Rebecca, No”, “Rebecca stop touching the trash can” etc. She KNOWS. She will turn and see who is watching. These days she takes it a step further. Because she knows I will give her a smack on the butt for misbehaving (after having been warned to stop, more than once) she will now either sit down, or put her hand over her butt as soon as she sees me move towards her to punish her. So she not only knows she is doing wrongly, she knows the consequence! What a stinker!
And no – time out would not work, this is a child with limited mobility. limiting her to her chair would not be punishment. Rewards have no meaning, so that would never work. Re-direct works for about, ohh 2 seconds.

So that is our life in a nutshell.

Summer break is almost over

This is our last week of summer break.  Its been a nice 5 weeks.  We’ve had a nice birthday celebration (simple, no fuss), a trip to the lake with lots of swimming, fun at home, playdate with  friend.

The most amazing thing this summer break has been how her skills have been progressing. Each day she amazes me more and more how much I see her use her left hand.  Walking around holding a toy in her left hand (and not her right).   Using her left hand to hold a cup. Speaking of cups, we rejoice that sippy cups are gone!  I’ve kept a couple around to have when going in the car and I need to give her something to drink.  She still needs the spill proof valve when someone isn’t right there with her.  Otherwise its all big kid cups.  Open cups, cups with straws, cute kiddie thermos cups.  The thermos cups are our next step, since when out and about you may want a cup you can have a good lid you can close.  The open cup is still a learning process.  She is prone to tipping the cup to much and giving herself an unwanted bath.  Someone needs to have their hands right there to help her guide the cup.

Yesterday she actually enjoyed finger painting.  This is a girl who has always balked at arts and crafts activities.  We’ve still got a long way to go on coloring.  But I have the “right” crayons now.  They are these super cool crayons called “Crayon Rocks”.  Now I know you may think that you can easily melt crayons into smaller “rocks” to hold.  Yet that isn’t what makes these crayons so great.  They are awesome because of how easily they write on the paper.  Such light touch and you have coloring.  It is perfect for kids who may rake the crayon across the page and not understand applying pressure to the crayon.

Seizure control has fallen victim to the facts of LGS (her seizure disorder).  Seizures are hard to treat, and often are resistant to medications.  A medication may work for a while then stop.  We’re seeing this now with Onfi.  Heartbreaking, but all the while I always feared we were simply in a honeymoon period.  I was determined to enjoy it while it lasted. Nothing more, nothing less.   Onward and upward to the next option I guess.

We went to the lake over summer break.  I worked out a new situation with some floats for Becca and she really enjoyed some new freedom in the water.  As usual she loved the boat rides.

In a month my brother and his family come to visit.  I haven’t seen them in about 8 years.  Yep, that means they have never met Rebecca.  I’m so looking forward to seeing them all.  My nephews and nieces are all growing up!

Well, I reckon that is about everything for the past 5 or 6 weeks since my last update.

Her brain is bored?!

I know my title sounds utterly crazy. Beyond crazy. BUT stop and think for a second. Her little brain has had so much seizure activity for 6 1/2 years now. She was having an average of 4.5 events a day. If you counted her head drops as individual seizures instead of singular events that number shoots up to 50-100 seizures a day. Yes, you read that right. Those head drops have anywhere from a dozen or so seizures to upwards of 50. Thanks to this new medication they are GONE. Her other seizures are doing better as well. This means that her brain is no longer in the electrical firestorm of seizures all day long. Now that this has happened her brain is having to re-organize. Remember this is a child who has had seizures almost her entire life. Her brain doesn’t really know what it is like to not have this firestorm. Therefore we’ve been dealing with a firestorm of a different kind as a result.
Remember that manic laughing I mentioned in the last update? Things have gotten a bit more difficult. For one thing we can not keep her from chewing on her left hand (she will chew on her right hand, but not so much). This is more than sucking on her fingers – she is shoving her whole fist in her mouth at times. She has ended up getting little sores in that webbing space between the fingers. I went out and bought a kiddie rubber gardening glove to cover her hand. We had to have something to keep the area clean and dry so it can heal. We’ve TRIED behavior modification. She laughs when you tell her “No hand” or “stop”. When you take her hand out of her mouth, she waits a few moments and puts it right back in. Smack her hand? Ehh she lets out a noise of displeasure and goes right back to chewing. She HAS chewies. She is simply preferring the sensation she gets from her fingers right now. I don’t know why.
Then there is what I call the Becca body meld. She doesn’t just try to snuggle. She tries to physically become meld with you. Like she can’t get close enough. She has a highly annoying habit of reaching her left arm around your neck so incredibly tight. So imagine the child laying chest to chest with you. Her knees pulled up. She takes her left arm and wraps it around your neck so tightly that her little 6-year-old arm wraps ALL THE WAY AROUND and she can then shove it in her mouth. CHOKE! And heaven forbid you try to stop her as she is doing this. She is incredibly strong. And many times in her attempt to get her arm around you she is clawing you. So yeah, when I say my child is beating the crap out of me, this is what I mean. She will literally try to climb up me when I am walking into the other room.
I was so glad to drop her off at school yesterday. But much to my chagrin the report from her teacher was she was in a great mood and her behavior was great all day. Ohh gee thanks kid. Beat up on mommy and daddy all weekend and be nice to your teachers? I really feel the love!
BUT – we did start her on a new medication to help with these behaviors, that according to the neuro are OCD and “Autistic-like” (No one thinks Becca is autistic though). We’ve not been on it a week yet, so it’s too soon to tell. So far I think I am seeing some decrease in these behaviors.

Her PT appointment I mentioned last update went fine. We decided to go with getting her “real” high tops (not converse cloth ones). There would not be much difference between these and SMOs (supra-malleo orthosis – otherwise known as orthotics that are only ankle high). The shoes should give her that same support and input. If we don’t find that these help we will order her SMO’s. The PT doesn’t want to go with full AFO’s. For my non medical friends – the full ones would come nearly up to her knee. The thought is those would limit her mobility more. She is getting more used to her new shoes. Plain high tops, but of course they are heavy and cumbersome. I mean come on – how many of us can easily walk if someone slapped on a pair of hiking boots. It’s not much different for her little feet.

Well I think that is our update for now. Eye Doctor tomorrow.

Pray for us that her behaviors normalize. Pray that our miracle with Onfi continues. And of course lift up all of our other Epilepsy friends, those doing good now, and those who are having a hard time. It is a long hard battle.

I just can’t get over this

Becca has only been on the new medication – Onfi – since January 15. Less than a month. In that month she has done amazing. Her seizures have been fewer. She has been chatting so much. Her attempts at communication are continuous. She is so vocal. It makes me beyond happy. Only now and then do we (Daddy and I) hear utterances that sound like real words. Sometimes it sounds appropriate for the situation. For instance last night she was chatting away and David repeated back sounds like she made, He said something to her along the lines of “I don’t really know what you said”. David and BOTH heard her say “why not?” I couldn’t help but laugh. Other times we may hear “Daddy” and then a series of babbles we don’t understand. So clearly she is trying to tell Daddy something. So cute!
I got out her iPad and turned on one of the talking animal apps (for the record it was Lenord – a big blue furry monster). Becca started making her growly noises. She got such a kick out of it repeating her sounds. She would make more noises. Each time it repeated them she became more delighted. I had to restrain myself from shaking with laughter at her delight! She got more and more excited. I loved the level of cognition that I saw with this app.
I’m also seeing improvements with her daily progress reports sent home from school. (I don’t have a copy of one in front of me, so its hard to give many examples). But one continual problem Becca has is always picking the object on the right side. As near as I can tell, she is starting to do better, or at least crossing mid-line to choose the right – which means – using her LEFT hand. WOOT!

We’re still not sure why she has had some issues with her gait. She seems to have, what was best described by another parent as spaghetti legs. Especially her right leg. I took her for an orthopedic appointment this past week and Dr. Fitch cleared her. He does want her to see a PT for an AFO consult. Thinking they could possibly give her more stability. With that in mind we will see her old PT later this month. Lisa Mangino (aka Gino) is the one who saw Becca back when she was younger, but has since discharged her from PT. We LOVE Gino!

Keep up the prayers for Becca, they are working. God is doing amazing things in her life right now. (having to end this blog update – some little girl has fallen asleep in such a way that typing using both hands is nearly impossible)

 

(Old Caringbridge posts)
Saturday, April 2, 2011 12:20 PM, EDT

 

It hasn’t been the best of weeks for Becca. Today was our 2nd day this week giving Diastat. I’ve also already had to give extra Clonazepam a couple times, trying to break this darn cycle. Thankfully after the diastat this AM she is playing like normal (if you can call mischief and breaking things normal).

Two more days of school and then intercession. when she goes back it will be the final weeks until Kindergarten year is over. We’re adding MCT oil to part of her Ketogenic Diet. This should help

increase her ketones and help her with seizure control. We’ve also had to start her on Potassium Citrate – Citric Acid – basically big fancy name for stuff to help her not get kidney stones. This is because of the diet, coupled with the topamax she takes. both increase the risk of kidney stones. the two together is obviously kinda risky. No new major developmental stuff. We’re experimenting with using Theratogs

to help her. They are a wearable therapy system. Its a system of a vest and shorts, with various straps. It provides compression and can also help gently pull various muscles into the right direction. This should help provide some calming for Becca and also help provide some better muscluar-skeletal alignment.

 

Tuesday, April 26, 2011 11:13 AM, EDT

 

What a wonderful Easter Becca had such a wonderful Easter. David, Becca and I went up to Pop Pop and Grandma’s place up at Lake Gaston. Granted the boat wasn’t ready for summer, and the water was to cold for swimming, so no fun water play – but it was still a great weekend. Becca enjoyed

her time up there. My Brother Rick, his wife Amber Lori, and their dog

Chance came up Saturday night. She has a favorite “toy” up there. Its a little electronic button (kinda like the special needs Augmentative Communication “big mac”) and when you push the button it plays part of the lyrics from Kiss”Rock and Roll all night” (“I wanna rock and roll all night, and party every day”). She LOVES this thing. She carries it around the house with her, playing the song over and

over. Its so cute! Now any time we go up there, she checks out the house for a bit – I guess

to figure out where she is and then goes right for that button. This time she found another new love. Sitting in the grass in my dad’s backyard. Anyone who knows my dad would know he LOVES his yard, and loves to take care of it. That yard could seriously be a commercial for grass or something. It honestly felt like a lush carpet under your feet. Becca loved sitting in the grass. She was good too, she didn’t try to eat any of it. Maybe we can finally spend more time sitting outside at home. This has previously been why we never did before – she just would try to eat the grass. The evil seizure monster has not been kind to her lately. Yet, by and large, she isn’t letting it stop her. No – I honestly don’t know what to do. Keep Becca and all of our seizure friends in your prayers.

 

Friday, April 29, 2011 3:04 PM, EDT

Please Pray

I went in to get Rebecca ready for school this morning, got her clothes out and opened up her bed. I got ahold of her and didn’t notice anything unusual. As soon as I got her out of her bed she went into full seizure. I laid her back on her bed and grabbed the VNS magnet we have stuck to one of the hinges of her bed. Multiple swipes of the VNS did not stop this monster. Her lips were turning that scary blue color every parent of a child with epilepsy fears. After a few moments her lips returned a soft pink

color, but the seizures continued, appearing to stop and start. In reality I know she was in constant seizure. Even though she wasn’t in a clonus the entire time, you could tell she wasn’t “with it” and was still in seizure land. I locked the door on her bed and went downstairs, calmly but quickly.

Daddy was getting his lunch ready for work. I told him I needed the Diastat, and why (it was in the drawer right under the cabinet area he was standing at). Of course it wasn’t the news he wanted to start his day with either. I went back upstairs and gave Becca the diastat – she was still seizing, but

the fatigue of the event was taking a toll on her. Shortly after I gave her the diastat she passed out. I watched her drift off into a diastat post ictal sleep. Around 9:30 I called her Neuro. Thankfully not only did I get right through to the Secretary – which never seems to happen on the days I need it, but

after telling her what was going on she put me through to the nurse, who also answered her phone right away. Uhh yeah – God was really looking out for us on that one. That was the FIRST TIME EVER. Told her what happened, and a brief synopsis of last weeks events. She agreed Dr.Mikati

would probably want to see us in clinic, but she’d talk to him and call us back soon. Within 20 minutes (I kid you not) she was calling back telling us we had an appointment for Monday AM. Later in the day she called to let us know Dr. Mikati wanted us to increase her clonazepam through the

weekend (and extra pill at her 9pm dose) as well if we had more problems to take her to the ER. Please pray for Becca. This was our first MAJOR seizure event. We’ve been dealing with epilepsy her whole life and have never had a full tonic clonic lasting over 5 minutes. Sure clusters of seizures lasting longer than 5 minutes, and back to back to back clusters. But the world of Tonic-clonic is still new to us. And its SCARY. Its horrible. It sucks. However we do have good news — not seizure related.

Becca’s Physical Therapist feels that Becca has come far enough with PT that we should consider ending PT services. Sure Becca isn’t typical in that area – but she never will be. Too many x factors. But she does awesome. She has come so far. So now we might instead add an extra Occupational

Therapy (fine motor stuff) or Speech Therapy session each week. Its kind of a hard decision to make. Life skills wise I feel like pushing OT might help her more. push come to shove she could use some kind of alternative communication. And she isn’t regularly trying to talk, not in the way a speech therapist could utilize in a session. So more work on those hands, and using them appropriately from my momma perspective is a higher priority. But I want input from her teachers and therapists (she has good specialists in her life). We’re also seeing some really good skills and hand use lately. Becca

grabbed the lace when playing with lacing bead, with her little pincher grasp and pulled. That was one proud momma moment for me. I was almost in tears.

 

Tuesday, May 3, 2011 11:10 AM, EDT

 

Things went well at Rebecca’s neuro. We’ve upped her VNS, so both the output current and the duty cycle are increased. I know that is Greek to most readers – but to those in the Epi/VNS family you’ll understand. Basically the shock is stronger and the on/off cycle is faster. We’ve also gone back up on the Lamictal. The hope was that we could wean her off of some meds to let the diet do more of the work on its own. After the first wean it wasn’t so bad. But the 2nd knock down of dose things got bad.

So we are increasing back up. She is going back up to 50mg, 25mg, and 50mg. (we were at 25mg, 25mg and 50mg – originally 50mg 3 times a day). If we have to we’ll go back to the original dose.

This whole seizure disorder is so scary. Knowing that a year ago she wasn’t having full blown tonic clonic seizures and now they are pretty much a daily thing. That now we’ve seen her lips turn blue a couple times. I got her neuro to write a prescription for us to get her a pulse oximeter. This isn’t something every child with Epilepsy needs, but it is something I strongly feel Rebecca needs. LGS is serious (I’ve been in denial of that one for a long time). But her recent changes in things have proven I need to know if there is a change in her vital signs that warrant us calling 911 (oh my – even the thought of that makes me sick to my stomach). Please pray these changes to Rebecca’s meds and her VNS help stop these recent changes in her seizures.

 

 

Tuesday, November 2, 2010 12:01 PM, EDT

 

November is Epilepsy Awareness Month.

So with that in mind….

Historically, epilepsy has been neglected, feared, and misunderstood. A veil of secrecy

surrounding the disease has resulted in myths, superstitions, and a general lack of knowledge.

This has impeded scientific progress toward finding answers to one of the oldest-known and

most prevalent neurological diseases, leaving treatment and research efforts in the dark ages.

It is estimated that close to 2 of the 3 million Americans with epilepsy do not have complete

seizure control, or only experience seizure control at the cost of debilitating side effects from

medications. The need for a cure is clear.

Many of the patients are children, who can experience up to hundreds of seizures a day. The

impact on the developing brain ranges from learning disabilities to retardation, and in a

disturbingly large number of patients, even death.

There is an increasingly large incidence of new onset epilepsy in the aging population as a

result of strokes, brain tumors, and Alzheimer’s Disease. In addition, for many soldiers

suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence.

 

What is a Seizure?

In normal brain function, millions of tiny electrical charges pass from nerve cells in the brain to

the rest of the body. A seizure occurs when the normal pattern is interrupted by sudden and

unusually intense bursts of electrical energy which may cause strange sensations, emotions,

behaviors or convulsions, muscle spasms, and loss of consciousness. These unusual bursts

are called seizures.

What is Epilepsy?

When a person has had two or more seizures which have not been provoked by specific

events such as trauma, infection, fever, or chemical change, he or she is considered to have

epilepsy.

What Causes Epilepsy?

Epilepsy may develop because of an abnormality in brain wiring, an imbalance of nerve

signaling chemicals (neurotransmitters), or a combination of these factors. Causes of epilepsy

may include head injuries, brain tumors, lead poisoning, certain genetic diseases and some

infectious diseases. However, in more than half the patients with epilepsy, the cause is still

unknown.

Historically, epilepsy research has been under-funded. The picture becomes clearer when

federal dollars spent per patient on research are compared with other diseases, many of

which affect fewer people.

FACTS

*Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral

palsy, muscular dystrophy, and Parkinson’s disease combined. Almost 500 new cases of

epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people

worldwide.

*In two-thirds of patients diagnosed with epilepsy, the cause is unknown.

*Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and

many other factors.

*In over thirty percent of patients, seizures cannot be controlled with treatment.

*Uncontrolled seizures may lead to brain damage and death. *Many more have only partial

control of their seizures.

*The severe epilepsy syndromes of childhood can cause developmental delay and brain

damage, leading to a lifetime of dependency and continually accruing costs—both medical and

societal.

*It is estimated that up to 50,000 deaths occur annually in the U.S. from status epileptics

(prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure related

causes such as drowning and other accidents.

*The mortality rate among people with epilepsy is two to three times higher than the general

population and the risk of sudden death is twenty-four times greater.

*Recurring seizures are also a burden for those living with brain tumors and other disorders

*Recurring seizures are also a burden for those living with brain tumors and other disorders

such as cerebral palsy, mental retardation, autism, Alzheimer’s disease, stroke, multiple

sclerosis, tuberous sclerosis, and a variety of genetic syndromes.

*There is a strong association between epilepsy and depression: more than one of every

three persons with epilepsy will also be affected by depression, and people with a history of

depression have a higher risk of developing epilepsy. *Historically, epilepsy research has been

under-funded. Federal dollars spent on research pale in comparison to those spent on other

diseases, many of which affect fewer people than epilepsy.

*For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long term

consequence.

FIRST AID

When providing seizure first aid for seizures, these are the key things to remember: (this

list was specifically written for tonic-clonic seizures – formerly known as Grand-Mal. However

they really do apply to any seizure)

Keep calm and reassure other people who may be nearby.

Don’t hold the person down or try to stop his movements.

Time the seizure with your watch.

Clear the area around the person of anything hard or sharp.

Loosen ties or anything around the neck that may make breathing difficult.

Put something flat and soft, like a folded jacket, under the head.

Turn him or her gently onto one side. This will help keep the airway clear.

Do not try to force the mouth open with any hard implement or with fingers. A person

having a seizure CANNOT swallow his tongue. Efforts to hold the tongue down can

injure teeth or jaw.

Don’t attempt artificial respiration except in the unlikely event that a person does not

start breathing again after the seizure has stopped.

Stay with the person until the seizure ends naturally.

Be friendly and reassuring as consciousness returns. THIS IS TRUE FOR ANY SEIZURE

TYPE! Especially in children, simply stroking an arm and letting them know it will be okay,

you are there and it will be over soon is a great comfort. It is probably the #1 thing to

do other than timing the event and making sure they are not going to get physically hurt

by nearby objects.

Offer to call a taxi, friend or relative to help the person get home if he seems confused or

unable to get home by himself.

Want to help – kids like Becca, or one of her friends who suffers from multiple daily seizures?

How about this Christmas, or on their Birthday, instead of giving them another toy or more

clothes, donating money to the Epilepsy foundation in their name. Of course you don’t have

to wait for a special occasion – our kids need a cure now!

 

 

Monday, November 8, 2010 6:15 PM, EST

 

We have officially been on the diet one month – including the time I’ve been home doing it on my own. Things are going well. Becca is not seizure free – but we’ve had some really good days. It can also be noted that the seizures Becca does have are not as hard on her little body. Even on a day she had a fairly high amount of seizure events she did not require naps to sleep off the seizures. Just two months ago, she would have been sleeping the better part of the day with identical seizure activity. This time – she didn’t skip a beat! That in and of itself is a blessing. This allows her more time to watch and learn about the world around her. Her walking is greatly improved. People who know her are noticing and

commenting to me how much better she is walking. I LOVE this! We are continuing to tweak things with this diet. That is the reason for our 3 month commitment. Trying to get things just right of how we are spreading out Becca’s meals and calories. We were doing 4 meals a day. However in an attempt to make the last meal of the day later, so she didn’t go as long overnight, it meant I woke her up to get her to eat. There was a downside to this – whenever I woke Becca up it triggered seizures. We’ve known for years that if she was sleeping off a seizure to not wake her up or it would trigger more seizures.

However, I’m guessing the same thing holds true when she was in that early restorative sleep stage. Since she would never have been in bed long – it meant I was disrupting sleep. So we have switched her to 3 meals per day. If it seems like she is hungry through the day we can change this to

3 meals and a snack. Pretty much any combination. There are some set #s for her dietary needs (Calories, Fat, Protein, and Carbs). Its a tad more complicated and its set up for me by her dietitian.

I am so happy with how well she is doing so far. Hoping she continues to improve!

 

Wednesday, November 10, 2010 4:28 PM, EST

 

Just had to update that we got progress reports from school for Becca and they brought happy tears to my eyes. Becca is now signing “more” (although it is a bit of a modified sign) with a little prompting. I’ve been working on this sign with her for years. She “gets it” now!

She is attending to books!

She is using the switch (controller) for the computer

Showing clear preference for toys.

Her walking is getting better and more natural.

Not all of this is a direct result of the diet – some of this is just my little girl growing up. But my little girl is growing up. She is in such a wonderful program in school and has such awesome teachers and therapists who work with her.

She is coming right along – slow and steady at her own Becca-speed!

 

 

Wednesday, November 24, 2010 1:18 PM, EST

 

Many of you know already – but some don’t. Rebecca’s MRI a couple weeks ago showed that her shunt was not working properly. She went from appearing quite stable to a dramatic change in her seizure quality and being more fatigued/lethargic during the day. She is going to bed soon

after dinner.

Neurosurgery has decided that her shunt must be revised. Becca and I spent a long day at Duke yesterday meeting with the doctor, pre-op and such to plan things. She will have surgery on Monday.

the reason for the “wait” is of course because it is a holiday weekend and she isn’t in shunt crisis – just in a slow steady decline. I’ll find out this afternoon what time her surgery will be. It involves staying overnight in the hospital. Only one night presuming all goes well. Please – pray that this helps her. Pray that the reason she was still having seizures on the Ketogenic diet was really because her shunt was already causing pressure and problems. Pray that once she heals that the diet will WORK 100% for her. I dream of the day my child doesn’t have seizures every day. Today has been a BAD seizure day. I’ve lost count One or two before we got to OT in the morning, multiple events at OT, more on the ride home, and more during Speech therapy. I’ve put her in bed for a nice long nap so she can rest and sleep.

I have made up a recipe for a Thanksgiving meal for Becca that is Keto friendly. She’ll get to have some Turkey just like the rest of us. A small amount of green beans AND I’ve got a pumpkin pie type concoction for her. so her own special Turkey day meal.

 

Saturday, November 27, 2010 8:24 AM, EST

 

We have to be at Duke at 7:30 on Monday for Rebecca’s shunt surgery. Hopefully this will fix all of the issues she has had lately – the bad seizures, the increased sleepiness, the stumble in her gait.

She enjoyed visiting family over thanksgiving, and her special Thanksgiving Ketogenic Meals.

BTW – if anyone hasn’t read this article from the NY Times it is a GREAT read

http://www.nytimes.com/2010/11/21/magazine/21Epilepsy-t.html

All about the diet Becca is on. On another note – we are finally getting Rebecca’s new special needs

stroller.

http://www.convaid.com/cruiser-wheelchair-hcpcs-e1236-p-69-l-en.html

It will be nice for her, since her long legs are just getting too long for a regular stroller.

It takes forever to get equipment through her Waiver program for her disabilities. But finally our equipment place has it in for her! We’ll get it on Thursday.

I hope everyone had a great Thanksgiving.

 

 

Monday, November 29, 2010 2:40 PM, EST

 

Surgery is over and we are in a room.

Doctor replaced the valve and the tubing in her head. Becca is doing well and playing in her bed.

 

Friday, December 10, 2010 6:10 PM, EST

 

Rebecca is bouncing back after her surgery. We had follow up with Neurosurgery yesterday. Dr. Grant was running really late. I’ve learned not to grumble too much – as long as I’m kept up to date (and I know we are not forgotten). One of the nurses we love had told us he was running behind. That’s fine – it happens. Emergencies come up.

We mentioned to Dr. Grant Becca was doing well but still having a lot of seizures – upwards of 10 or 12 a day (the count was over 12 that day). I mentioned how previously we’d done an extra clonazepam dose for a couple days to break these kinds of cycles. I’m guessing she is just in a bad cycle now. He mentioned that Dr. Mikati is in NF clinic today and we could ask him. So he goes out and asks him. I hear them talking and of course Dr. Mikati wants to see Becca (in a good way – not must see before

approving meds way). So Dr. Mikati adjusts her VNS so that the time that it is “off” is shorter. We also decide that I’ll give the extra clonazepam through the weekend. Gave extra dose at dinner last night and today has already been a better day. That stuff works quick. Its always been one medication I love. We

tried to wean her off of it – simply because it is bad to be on for too many years (highly addictive) – and her seizures got way worse. So we know it is helping.

Also – as an aside I’ve discovered the “Ultra pasteurized Heavy Cream”

has ingredients other than cream (milk)! It has mono and di-glycerides and Polysorbate 80, carrageenan –

those add up to additives which could be triggering more seizures!

DOH!

So now I’m trekking over to whole foods to shell out the $$$$ for Heavy Cream that isn’t “Ultra” Pasteurized. Don’t know why some cream is Ultra Pasteurized and some is simply Pasteurized.

But I’m going to eliminate these yucky additives and hope it cuts out these residual seizures she would be having (presuming she isn’t in her bad cycle or in shunt failure). On a funny note – Becca is turning into a climber. She likes to climb over the arm of her recliner. Tonight she tried to climb up the arm of the sofa. If it wasn’t a cold winter I’d take this kid to the playground. I think she would suddenly love the place.

** updated to add a picture of Becca and Santa at our local Family Support

Network ‘Cookies and Cocoa with Santa’ Event

Becca had a Blast. She did some Crafts, played some games and had her picture taken with Santa.

 

Sunday, December 26, 2010 6:50 AM, EST

 

The presents are unwrapped, the food is gone (except bountiful yummy leftovers!) and we are now in Christmas hangover.Except for a bump in our road Christmas morning – Becca had an AWESOME

Christmas. we gave her Diastat Christmas morning, Daddy and I were not going to things get bad and let her be miserable. 3 events within an hour of her being awake and we knew she had enough. After her diastat nap she had a GREAT day. We went off to my dad’s house and had fun! However – I should say that was day TWO! On Friday we spent the day with her Grandparents in the High Point area (Daddy’s family). Becca had a blast opening presents. She would rip open gifts even if they were not

hers (little stinker!). Every now and then both days she had her eyes set on a certain gift and just HAD to get that one open. Friday at Grandpa’s house it was a gift bag for me. Saturday there were a few presents she was bound and determined to get open. It was too cute! Of course both days towards the end of the day she was just done with things. She’d want nothing to do with trying to unwrap things, or all all the commotion. She was ready to just go do her own thing again. I’ll upload pictures to our Kodak Gallery later (and probably a few here and Facebook).

Merry Christmas Everyone – I hope you had a blessed day.

 

 

Sunday, January 4, 2009 2:02 PM

 

Rebecca is doing well, we had a good Christmas and New Years. I’ve enjoyed all the time with David at home, and I know Rebecca has too. She did have her usual, expected increase in seizures right after Christmas. The holidays are so overwhelming for her. She has rung in 2009 with yet another cold. This is her 3rd cold since early September. She managed to get me (mom) sick right away this time too.

Lucky me.

A happy thing to share is how much Rebecca is just letting go of things, and standing independently. This happens often in our den, while she is playing. She will let go of the couch, or coffee table and just stand there. This morning it was for nearly a minute while she ate some leftover pieces of the mini-bagel I’d left for her on the coffee table. Other times she stands in front of her toy shelf, with no support. Considering at one point,not so very long ago that Rebecca would stand as long as you held her hand – but the split second you let go or tried to get her to stand alone,she lowered herself to the floor. Hopefully she will gain more and more confidence and we will see her walking on her own in 2009.

 

Saturday, January 17, 2009 6:37 PM

 

So Rebecca had her Video EEG this past week. All I can say is I am glad that is over with. We don’t have any specific results. I had spoken with her doctor on Wednesday morning, but haven’t since. I know they still know most of the activity is coming from the right side of the brain. They decreased some of her meds while she was in the hospital to bring on more seizures. So the doctors got lots of information to review. They are trying to schedule a SPECT scan to further determine the focal point. You’ll have to Google that one yourself – all I know is that when she is having the seizure a nurse will inject her with the special dye, and then Rebecca will go get a special scan of her brain. It measures the blood flow. The theory is that there is increased blood flow in the area of the seizure activity. Anyhow, we are recovering from the hospital. It was nice while we were there that Rebecca got to have one of the same nurses that she had back when she was little and last admitted to the 5100. Lucy is a GREAT nurse.It was so cool that she remembered our Rebecca. I had remembered that there was a nurse that we had really loved when we had been on the 5100 before, but I couldn’t recall who it was. But after a short time talking to Lucy again, I remembered it was her. Thank you Lucy for taking such good care of Rebecca (and Thank you to Tonya, Stephanie and Rachel as well).

One thing we still struggle with and hopefully one of our faithful caringbridge readers will have an idea – is persistent serious gas. I don’t mean a little bit of burping and farting. I mean excessive. Within a short period of time you figure out that there is no possible way that it is normal, or healthy. And her belly is distended. I’ve taken her to the ped once, but they didn’t really offer much help. On top of that, we are back to her intermittent vomiting. She threw up the morning before we went in for the Video EEG. We thought maybe dinner from the night before was “off”. Thursday when we got home, she threw up again. This time, the her bed looked like a scene straight out of the Exorcist. There was puke EVERYWHERE. Poor baby! Yet neither David or I heard a thing. Friday she didn’t want to eat much (can you blame her).Then she threw up again this morning when I was attempting to give her breakfast and her morning medicine. She went though this a LOT as a baby. She’d throw up once a day, on and off. It would come and go. It might be a couple times in one week then disappear for weeks at a time.

All we were ever told by the doctors then was “All babies spit up” Something isn’t right. I don’t want to see to hypochondriac, but I just know something is wrong with her GI tract. Hopefully one of you who follows her story will have an idea. And yes, she does take stuff for reflux.

 

Saturday, February 21, 2009 6:31 PM

 

Rebecca has been doing FABULOUS lately. She has been taking lots of independent steps. She isn’t totally walking by herself (using that as her primary means of mobility). But she is getting more confident, and is able to take about 10 steps by herself with very little prompting (or bribery with Gummy Bears).She is doing several other little things here and there that show great improvement developmentally.

 

 

Tuesday, November 4, 2008 11:46 AM

 

Just had to come in and share what a wonderful accomplishment Rebecca did today. She stood on her own (No support at all) for one whole minute! I was able to get her to stand several times, but her longest time this morning was 1 minute. I couldn’t convince her to take a step unsupported, but standing unsupported is still a major accomplishment. She was doing that some before all of her shunt surgeries (and even taking a couple steps).

This means we appear to FINALLY be back to where she was before all of this shunt stuff started. And with her new found energy, stamina and determination (of a typical 3 year old), she should start skyrocketing! I’d say our only problem is that she is doing some self-stimulation behavior. She is making grunting/growling noises and waving/smacking her right arm. She does this for hours on end (okay the better part of the day). She drives David and I crazy with her noise sometimes – especially at night when she won’t be quiet and go to bed. She doesn’t sleep like she should. So if you could, please keep Rebecca in your prayers that we could meet her sensory needs so that she could relax and not need to “self-stim” (a common behavior among kids with Special needs – esp those with Sensory issues aka Sensory Processing Disorder). And also pray that she could get the sleep she needs – so that David and I can get the sleep we need!

God bless you all –

 

 

Friday, November 14, 2008 9:04 AM

 

Well Rebecca has missed school this week because of a cold. I took her to the doctor yesterday because of a suspected ear infection. Sure enough, she does have an ear infection. Poor thing is hurting so bad in her right ear.

At least this morning she is finally getting some good sleep, her ear has hurt her so badly she hasn’t slept the past two mornings. Her seizures still seem to be doing okay (as good as okay is for her). Developmentally we continue to see improvement. We see her using her left hand a lot more, reaching for and attempting to manipulate toys. please continue all your prayers – they are working! We see the Neurologist on the 25th, Rebecca also has a MRI that day.

Please pray for the MRI to be clear. We also hope to talk to the Neurologist about getting an EEG for Rebecca, so pray that we will be able to arrange that without too much fuss.

 

Monday, November 24, 2008 1:25 PM

 

well we have moved Rebecca into her Big Girl bed! We bought her a nice bunk bed and David made some really nice railings for it. Now it is like she has a Twin sized crib. This way she has a bed big enough for her, but is still totally safe.

Wanted to let you know that we have a few important appointments this week. Tomorrow she has a MRI. Then Wednesday she has an EEG before we meet the new Neurologist (yes our appointment with the Neuro was changed).

Please keep us in your thoughts and prayers for these appointments. Pray that we get the kinds of results we need on the EEG, it is one of the few times we need her to actually have seizures. We need the doctors to see what has been going on.

 

 

Wednesday, November 26, 2008 5:47 PM

 

HAPPY THANKSGIVING

Yesterday was her MRI, all went well. The Gliomas are still gone! YIPPPIE Reason to be very thankful this Thanksgiving. Apparently the ventricles still look good, so this means that the shunt must be doing its job. Today was a long day for Rebecca. Aside from some confusion at Duke about getting from the main hospital over to Duke South (they got rid of the rapid transit system folks! Totally messed with my plan). We managed to make it to the EEG appointment not to late, or at least no one complained.

Rebecca was very patient with the nice nurse, Grace, making all the marks getting ready to hook up the electrodes. She started to loose her patience as all the electrodes were attached, but there were a lot of them to get hooked up, and it was a long time for David and I to keep her hands out of trouble. Then she had about twenty minutes of monitoring, including some photo stimulation (flashing the lights at her). The lights did NOT trigger anything, which we knew, she loves bright flashy lights. She had a small seizure event as she was getting hooked up, but nothing we could see during the monitoring time.

After the EEG we went and had lunch. Some minor trauma as I tried to get her through the turnstiles with the stroller – note to self – don’t try that again!

We went for our Appt with Dr. Mikati, and I am very happy with my decision to seek his opinions. First he took the most thorough history I have EVER had a doctor take. So the end results – what you’ve all waited for:

The EEG only showed activity on the right side of the brain, but of course didn’t really show them all the data they needed There are some neat MRI findings – basically if you look at the left side of the MRI the differences between the gray matter and white matter are very clear, on the Right side, not so much. This means that the right side of her brain is under-developed. This could explain why she has such weakness on the left.

He wants her to have a Video EEG to pinpoint all of her seizure activity.

There are really 3 options

Continue with meds – there are many other ones we can try. But she has

“Failed” so many, there is a slim chance a new one would work.

Immune therapy – this would be either a new round of ACTH, or IVIG

(Immuno-Globulin) Therapy. We could decide on this when she is admitted for the Video EEG

The other option would be surgery. There are several choices for surgery, the most common and the most effective is Function Hemispherectomy (I think that was the right name). Basically they remove a large section of the side of the brain causing the seizures. If needed they also disconnect the two halves (Corpus Callostomy I think). Putting in a VNS is another surgical option.We can also go back to the Low Glycemic Diet. Or if we push hard enough to get the right people on staff, start the Ketogenic Diet. But first Duke has to have the Dietitians who are willing and able to help administer it. Right now they don’t. However, they do now have a doctor who is trained

(Dr. Mikati).

Thanks for all your well wishes for her appointments!

 

Monday, December 22, 2008 10:13 AM

 

Wishing everyone a very Merry Christmas

Rebecca is doing well and very ready for Christmas.

My prayers go out to all of my caringbridge friends, those who have won many victories this year, those who are fighting hard, and especially those who earned their angel wings this year. Thank you for sharing your life. I pray that 2009 holds many good things for you and your family. May the Lord be with you.