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.

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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.

 

save the brains

I’m sure all of my readers know that November is Epilepsy Awareness Month. (I do have readers… don’t I?)

I have written about our journey with epilepsy through this blog, as well as Caringbrigde (those entries can be found in the “about us” section). We’ve fought this demon for over 8 years now.

Becca has faced delays in development since she was an infant. At two months old she wasn’t turning her head and tracking like she should have been doing. Head control was lacking.

So many of my friends story of their child’s journey with Infantile Spasms or Lennox Gastaut detail how their child was developing normally until the seizures hit. Perhaps the child was even ahead.
Becca has never been developmentally normal much less ahead. However I have never given much thought to her regressing.

That is until today. I spent a little time looking through some old emails. The good thing about using MS Outlook to read my emails is I am able to save emails, even when our internet provider has changed over the years. I have emails dating back to January 2006.

I could see where I would talk with other families on this journey about my concerns and my joys. I could see where I would rejoice in new skills Becca had gained. I realized many of them were seen only briefly, sometimes to never be seen again. Sometimes the skills would just stay stagnate for years. Sure she was doing some cruising of furniture at 18 months. Little did I know at the time it would be years before she would actually walk on her own. That she would effectively stop crawling. So much so that if it were not for old emails or other journals I would think she never crawled.
I am shocked to see proof that she once babbled – A LOT. Now, she is quiet most of the day, making very few noises.

Rarely do I think in terms of what this horrible seizure disorder stole from her. Rather I think of what she never had. It is very sad to look back and see there have been times when she has a lot, and then it slipped away. Over and over again.
Lennox Gastaut is a horrible monster.
As she gets older I am seeing that more and more. I see what her having TWO episodes of Non-Convulsive Status Epilepticus this year have done to her.
So knowing the damage that the multiple seizures a day, every day has done to her brain I know that this November the idea of “Save the Brains” resonates even deeper with our family.

Moving forward against this monster called Epilepsy

So Becca has continued to have problems. So much so that when she went for her MRI last week the Neurologist who came down to turn of her VNS quickly agreed with me that something was wrong. Rebecca was – well just not Rebecca. This is a child that normally during the time before her MRI scan she is practically climbing the walls, and I’m doing all I can to hold her down (or leaving her in her wheelchair for my own sanity!). This time, she would lay on the stretcher, not 100% still, but no one had to keep a hand on her at all times.
The Neuro person (although I think it was a RN or PA), asked what types of seizures she typically had, and when we last gave diastat. Thankfully I had all that on my Android Tablet. I showed her a video. I showed her the spreadsheet with the seizure data. She showed the video to the Pediatrician who checks kids out before their scans. Both agreed it may not be safe to give Rebecca a scan as she was. So they made some calls, and did some magic. Becca was sent upstairs to get an EEG first to make sure she wasn’t in status. This was a huge relief to me. This was what I wanted done if her MRI was clear. So she was just getting the EEG first.
That took a while, they monitored her a bit longer than they would for a regular routine EEG. She wasn’t in status. Her regular EEG pattern is quite abnormal, and that is just what it was. It showed a few seizures (which I knew, I was laying with her on the hospital bed the whole time and saw them). The good news is, the EEG captured the two big event types she has now.
So after her EEG we went back downstairs for her MRI, since we now had the all clear to proceed with that.
Once Becca was back on the scanner I was able to go grab some lunch Becca can’t eat before a scan since she is sedated, which means Mommy can’t eat in front of her (I’m not that mean). Once her scans were done I went upstairs to try to catch her Neuro-Oncologist. The fabulous Dr. G. We had long since passed her appointment time because of the EEG. But I was advised to go upstairs since he would be able to pull the scan results already and may be able to still meet with me.
the receptionist called back to him and he said he would call me with results. He did – by the time I got back downstairs. Alas, I had cell phone troubles and had to use the phone in radiology to get back in touch with him. But it was so nice to have the results of her scan before she was even back in recovery! I kid you not – I had not even seen her after her MRI and I knew her MRI was stable!

She took forever to wake up from sedation because of stupid seizures. She would wake up, have seizure and go back to sleep. Yet thankfully we were allowed to go home. That evening we ended up giving diastat. She came around.
Saturday was another tough day, requiring Diastat AGAIN. Same thing on Monday, which also had me hold her out of school. I got in touch with her Neuro Monday. Yes, ironically enough, through everything last week I had not spoken with Dr. Mikati yet. Well, okay I didn’t talk to him Monday, just his nurse, Renee. But we talked about what meds Rebecca is on and what meds she has tried before.
The final decision was to try a new medication. Rebecca has started on Trileptal. Well – okay the generic, which is some crazy name I can’t spell or pronounce. I’ll have to stick with Trileptal for now, which I can spell. She is getting 300mg 2x a day.
Hoping this helps. Epilepsy really sucks. We already know we are in this for the long haul. We may one day find some drug combination that gives her a better level of control. I have faith that one day God will fully heal her. I do not know when those days will come. I hope she continues to enjoy life as much as she does. She is a blessing. I just can’t get enough hugs and kisses out of her – no matter how much I hug and kiss her. Its a good thing she is a snuggle bug! I told her last night I had to get in as many hugs as I could while she was still small, and that she was nowhere near as small as she used to be. And for those who have never been lucky enough to get a Becca hug or a Becca kiss, you are missing out. She gives good hugs. Okay – her kisses are wet and slobbery, but she knows what it means when you ask for a kiss.

School is going well for her. The first quarter is nearly over already. Hard to believe. Becca has a new classmate – and trouble because it is another cute boy, and another first grader. Jameson better step up his game – he has competition now! Hahaha! Although considering there are 4 boys in that room and only 2 girls, I don’t think the girls have much to worry about.

Well I can’t think of much else to write, so that is all for now.
thanks for reading and have a blessed day.

 

(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.

 

Surgical workup

Saturday, August 1, 2009 9:36 AM

 

Well Tuesday is going to be our big day!

The past month has gracefully flown by. We did manage to switch Rebecca’s Keppra back to regular Keppra from the Keppra XR and that has helped, but she is still in somewhat of a rough patch in regard to her seizures. But don’t fret – that is a GOOD thing, going into this surgery. The first part of the surgery is to implant EEG electrodes, and monitor her seizure activity. So we WANT the seizures to continue, hard and heavy once we get into the hospital, so the doctors can get lots of data to make the right decision. Becca started her new year at Pre-K. Same classroom and same teachers, but this year the 4 year old’s go 5 days a week, all day. So Becca is going to school as much as a Kindergartener! It wears her out, but she enjoyed it. They even take nap during the day. she has had a few bouts of digestive issues (I’ll spare you the details), and has missed a few precious days of her only 2 weeks of Pre-K before the surgery, and missed several sessions of OT or PT, but keeping her healthy before surgery is important. I’ve been helping her walk into school this year, so instead of riding in her wheelchair to and from the classroom, she is walking in! Just like one of the big kids. Well – not quite, she requires a lot of hand hold assistance to keep a distracted 4 year old from sitting down to play where she is, or walking up to any and every stranger in the hallway to say “Hello” in her own special ways. I am so proud of her. Even other teachers at the school, who just know Rebecca from seeing her in the hallway are amazed at how well she is doing and have commented on her progress to me. Rebecca even has a special teacher friend at school, that isn’t even her teacher! Ms. Eubanks teaches 4th grade, but Rebecca loves to stop and say hello to her each morning. The first day of school she toddled right up to her and gave her a big hug. I don’t know who was more ready to cry, the teacher or myself. The attached picture is from her first day of pre-k this year. Continue to pray for us as we have her Pre-op on Monday, and surgery Tuesday. I’ll do my very best to keep this site updated after her surgery is over (Duke has internet access so it shouldn’t be a problem).

 

 

Monday, August 3, 2009 1:29 PM

 

Today was pre-op we did learn one thing today, that was different than what we thought. It isn’t going to be all one admission like we were under the impression it was supposed to be. Evidently this will just be the 1st surgery (the intracranial EEG leads). Then after they get all that data that they are happy with, they will remove those, keep us another night or so, and send us home. Once she is back at her baseline, we will return, and THEN proceed from there. Dr. Grants aid the risks are too great to just proceed with grid placement right away. She needs some time to heal. So whereas it doesn’t mean as much consecutive time in the hospital as I thought, it will mean more back and forth than we thought. oh well. We’ll know for sure after 4 today what time the surgery is, but Dr. Grant thinks it will be about 9 or 10 am tomorrow. It should last about 4 hours. Still expect 1 night in PICU, then off to one of the EEG monitoring rooms in the 5100, likely 5102 again.

 

Tuesday, August 4, 2009 3:07 PM

 

Rebecca is out of Surgery and we are waiting to see her in the PICU Dr. Grant says everything went well. I’ll update more tomorrow once I’ve seen her etc.

 

 

 

Tuesday, August 4, 2009 7:20 PM

 

We’ve been into the PICU to see Rebecca, she is still really groggy and sleepy, so we’re just trying to let her sleep for now. They gave her some additional pain medication, since she seemed to be pretty uncomfortable (you would be too with holes in your head!). But the more she rests now the faster she can heal. But so far she seems fairly responsive to David and I. Tomorrow we’ll get moved to one of the EEG monitored rooms in the 5100 unit.

 

Wednesday, August 5, 2009 4:33 PM

 

We are settled into the room now (5103). I went home and took what was perhaps the best nap of my life! David stayed with Becca. Rebecca is still getting pain medication pretty much every few hours to control her pain. We still haven’t coaxed her into eating or drinking. We’ve given her drops of apple juice through a straw – but she has yet to suck or drink on her own. We’ve tried giving her bites of yogurt on a spoon, but she isn’t very interested. poor baby!

Now we just settle in, and “push the button” every time we see a seizure event.

 

Thursday, August 6, 2009 7:43 AM

 

Rebecca and I both had a fairly restful night.

After my last update thanks to my faithful prayer warriors we were able to coax her into eating more pudding. yippie! I’ve given her a few bites this morning, but it was about the time she needed more pain medication, and she was just getting to sore to use the energy to eat (I imagine using your mouth and jaw to open for food is hard when your head hurts as bad as hers does). So we’ve given her some more medication and will give that some time before giving her some Applesauce (a favorite food!) They are gonna take out the catheter today. I know – a catheter for a kid in diapers? But it is so they can easily measure fluids in and fluids out during that period right after surgery. They will also take out the 2nd IV line in her left hand. It hasn’t been used since the surgery, but was there just in case. They kept saying they wanted it in case her other IV fails. I finally convinced the Dr they can use the Dang port if her IV fails, it was stupid that it wasn’t used in the first place. All she keeps doing is chewing on the IV access. (I think its a bit of “Hrm what is this – get it off my hand!”)

I feel badly because she so badly wants someone to pick her up, but she hurts to badly for us to even get our hands under her. She has signed eat a couple times to get a few bites of food. And yesterday – maybe she was playing, I dunno – but she signed “More”, we couldn’t figure out more what, but she kept signing more. She has NEVER signed more before. I know this isn’t even THE epilepsy surgery, but still, a major communication breakthrough. Dr. Grant said they will likely have their conference on Friday to discuss all the data. Keep up those prayers.

 

Thursday, August 6, 2009 8:01 PM

 

We’ve spent most of the day trying to coax her to eat and drink. She still hasn’t been very eager about either. I reckon part of her refusal to drink is she is so well hydrated with IV fluids. But we’ve gotten her to eat a little bit more at each meal. Dinner tonight was Chicken Tenders, so those cut up into teeny pieces were gobbled up because she could do it herself when I gave her the bite. But it wears her out fast. She did get to snuggle and sleep on daddy’s lap for about 10-15 minutes today. Moving her isn’t easy, aside from managing her pain there are also the wires to worry about. Those EEG electrodes from inside her head are attached to a small backpack with little jumper boxes. During a normal EEG she only has 1 jumper box thingy in the backpack. But because of the number of electrodes there are 3 of them. Not something she could lift herself. Plus the lead from the wires from her head to the backpack isn’t all that long (the backpack is sitting beside her head on the bed). So to manage that, all the other typical hospital stuff, it takes 2 people to move her. The good news – and those that know her well can appreciate this. She is still excited about gummy bears. Put a bite of food in front of her and you can see the “ehh” reaction though eyes that are only halfway open. Put a gummy bear in front of her and those eyes open nice and wide and she looks at the gummy with that look of “ohhh!” Then her little hand reaches out and grabs it and she shoves it into her mouth. Gobble Gobble! Our baby LOVES her some gummy bears (The Target brand gummies are especially soft, and flavorful. Total opposite of the traditional “Haribo” brand! Whoda thunk the tarjay brand would be head over heals better, but it is.

The doctors are going to have their big Epilepsy conference tomorrow. This is where they will look at all the data they’ve gotten, her scans etc and try to come up with a next step. We don’t know the time, only “morning”. It isn’t something we get to attend unfortunately, but it does mean that by mid-afternoon we should know something.

 

Friday, August 7, 2009 9:39 AM

 

Like clockwork – day 3 and the swelling commenced, and this isn’t even as major as the other surgery Well, the doctors met and talked, and it seems that the activity does mostly come from the right temporal lobe, but enough activity is seen everywhere else to say surgery is not a option. So the next step would be a VNS (Vagal Nerve Stimulator). So they will monitor her through the weekend, She is on the surgery schedule for Monday to remove the leads. Monday they will take them out and we should go home Tuesday. Then we’ll give her a month or two to recover and decide on the VNS. She ate a little bit better breakfast this morning and even drank a little bit of her chocolate milk!

 

Sunday, August 9, 2009 7:43 AM

 

So just saw one of the Neurosurgeon’s and found out we are on schedule for first thing in the morning (don’t know what that means, but really early I suppose). He said they bumped her to the first case. All the better for her though!

So we’ll go home Tuesday! The end is in sight. Although I know we really NEED Becca to eat and drink better. So please – all my prayer warriors, pray she gets her appetite back. Becca is NOT a picky eater, or a child who would normally ever turn away food or drink. We are dangling some of her very favorite foods in her face and other than gummy bears she is pushing away most everything. She just doesn’t want to open her mouth.

 

Monday, August 10, 2009 3:04 PM

 

So all the electrodes are out. The surgeon put a very thin layer of titanium mesh along the area of the front where those holes are. He said the other holes he could cover with muscle, but the ones in the front he put the mesh to give her a little bit more protection as the bone grew back in. She obviously still grumpy and we are managing her pain. But she has already drank some chocolate milk with the gusto we are used to seeing her drink with! She snuggled and slept on David for a good bit as well.

Hopefully we’ll head home tomorrow!

 

Tuesday, August 11, 2009 11:16 AM

 

well she ate pretty good for Breakfast, unfortunately she has had a minor “setback” through the night. She has had a slight fever on and off. Because she is post-surgery we have to stay another day to make sure it doesn’t get worse and that there are no signs of infection. Major bummer. We really wanted to go home. (that and the kid in the room next to us is being a royal pain and keeps having major temper

tantrums and screaming) Pray her fever goes away!

*minor update* – since the room we were in is one of 2 rooms wired for Video EEG, they needed to move us to another room so they could use it for a patient coming in who needed the Video EEG monitoring (VEEG). We were on the VEEG monitor until they took her strips out yesterday. guess the good news is, we aren’t next to temper tantrum girl anymore! (she had 3 or 4 screaming fits last night between 8 and when I finally passed out, not because she was in pain, but because she wasn’t getting her way)

 

 

Wednesday, August 12, 2009 10:56 AM

 

Home at last, home at last, Thank God Almighty we’re Home at last (My Apologies to the Rev. Martin Luther King for rewording his famous line – but its just perfect for how we ALL feel) Rebecca was so ready last night she managed to remove her port access – aka “De-access herself”. Thankfully the IV had been stopped and she’d already been Heparin flushed, but its still too funny. She was pretty much pitching a fit anytime she was in the crib too – she wanted OUT!

She is sleeping comfy cozy with Daddy on the couch now.

Now for a few days to just chill out and relax.

 

Wednesday, August 12, 2009 7:43 PM

 

I’ve realized over the past week a few things I never realized how much I took them for granted

– Wood sub-floors (walking around on concrete floors all day hurts your feet, Hospital floors have zero give to them. Your typical house flooring has the sub flooring to give it that give (and usually that squeak!). – Being able to just walk into the kitchen to get what I want, when i want it. No trying to make sure Becca is securely in her bed and trodding down the hall to the ice machine/water fountain to get something to drink (or make my Crystal Light with).

– Not having to hear other children have temper tantrums at all hours of

the day and night.

– SILENCE, no monitors beeping, the constant clanging of the little metal

rack where charts are kept, or the opening and closing of 3 ring binders.

– 2 ply toilet paper (that industrial hospital toilet paper is cheap!)

– Being able to give my child her medications on OUR schedule not the

nurses/hospital.

Ahh – so glad to be home!

 

Sunday, August 16, 2009 10:46 AM

 

Becca is recovering well. Her appetite is more or less back to normal. I guess like all kids her age, she has ups and downs in her appetite, and she is at the low end of her normal. Soon she’ll be back to eating everything in sight. She is perking up as soon as David or I walk into the room with food, which cracks us up. She is like a little puppy dog the way she comes and begs for bites of foods, its so cute! (and she does a great baby bird impression, opening her mouth and pecking her head forward). It never ceases to amaze me though, how clingy our little girl gets after hospital stays. Now granted, she is a snuggler by nature, but she turns into what I lovingly call “Velcro girl” – because she clings to us like Velcro. You try to pry her off, but her little arms just wrap around you so tightly. She practically climbs back up you.

We’re still working on getting her to not rub and scratch at her head, but we are unable to keep any kind of wrap or bandage on there to keep little hands off her head. She has pulled off everything I put on there. We go on the 24th to get her stitches taken out. I plan to take Becca to her PT appointment on Tuesday – it was one I didn’t cancel and I decided we’d go and just give it as much as Becca was up to. She needs the work out anyhow – and I know she will LOVE LOVE LOVE the chance to ride the tricycle. I hope to get David to upload the pictures he took with his phone while we were in the hospital – he took a couple of Becca in some really cute positions (she was asleep but in a strange position).

Thank you all for your continued prayers and support! And thank you to all of our wonderful nurses in the 5100

I can’t even remember all the nurses we had over the week – but you were all so wonderful to us! Thank you. (ohh and the nurses in the PICU that one night too!)

 

Tuesday, August 18, 2009 7:21 PM

 

Becca continues to do awesome recovering. She had her first PT session after the surgery today – she did great. Yeah, not the same endurance or strength, but awesome! She is going to get to start seeing Lisa again – the PT she saw when she was really little up until early this year. Lisa is now seeing patients at Lennox Baker (she was doing Home Health and kids who were inpatient at Duke). So happy that Becca and Lisa get to work together again! We love our other therapists, but Lisa has a long history with Becca, so its extra special. We go Sept 9th to get the Vagal Nerve Stimulator (VNS) put in. Here is a link to the website for the VNS

http://www.vnstherapy.com/epilepsy/patient/index.asp

That can explain it better than I could.

I do have a prayer request – not for us, but for another child that is very near and dear to our hearts. We met Mackenzie (aka Z) when Rebecca was getting Chemo. She is the most amazing child I have ever met – or will ever meet. Wise beyond her years (heck, wise beyond MY years!) She has been battling cancer for a long time, and well – things are pretty grim right now. http://www.caringbridge.org/visit/mackenziebaysden

As much as I want God to heal her completely so she can grow old to help other kiddies with Cancer, I reckon the biggest prayer she needs now is just that God would be right there with her. That she wouldn’t be in pain, and that she can really enjoy her days – how many more she may be blessed with (that her days would be a blessing). (I’m gonna cry now, thinking about the world loosing this child) Thank you friends.

PS – check out some of the pics I added of Becca in the hospital

 

Saturday, August 29, 2009 9:35 AM

 

We got the stitches out this past Monday. That was a horrible experience. The wounds had healed almost too nicely, and so getting the stitches out was really hard. But Nurse Brandi was awesome and was really good with Becca. We’ve known Brandi for a long time in the Neuro clinic and she knows Becca well. After Becca got all the stitches out we visited the Treasure Box and Becca got to pick out a prize for being soo good. Becca is back in school after the surgery, and back onto her regular PT/OT schedule. She is so happy back in school. Actually Tuesday it was rather priceless. She practically raced down the hallway. I’ve never seen her walk so well and so determined to get where she was going! Granted the rest of the week didn’t go quite so nicely, but oh well.

Because Ms. Katie isn’t working at Lennox Baker any more we’ve had a bit of change in our PTs. Rebecca gets to work with Lisa Mangino again! That’s right – the same Lisa who worked with Becca for so long. We are so excited to have Lisa back in our lives again. Surgery for the Vagal Nerve Stimulator is still scheduled for September 9th. It should be an out-patient surgery, unless there are any kind of complications. Even if Rebecca has some issues waking up from anesthesia we’ll stay overnight. Granted, we want to be in and out, but we do have a safety net if needed.