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.

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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.

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.