(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.

 

 

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Friday, September 17, 2010 1:34 PM, EDT

 

So we’ve made it through our first quarter of school (okay technically I don’t pick her up for another hour and a half – don’t get too technical on me!)

Rebecca is doing so awesome in Kindergarten. She loves everyone over there and is really meshing well with the staff. She is tolerating hand over hand so much more these days.

I think only once have I had to go back to school to pick her up because of seizure activity. Her teachers are so great about managing things. They really are comfortable with her events, and unless its really out of control they haven’t called. Usually if she is having a bit of a hard time, or worn out from seizures they just pull out one of the mats in the room and let her rest for a bit – which is all I’d do at home, let her sleep. So she gets a short nap at school and is ready to play with her friends again. And Mommy doesn’t have a heart attack when the phone rings and she sees “Easley” on the caller ID.

Onto heath news.

We’ve battled our first cold of the season. Lets hope we keep them to a minimum this year!

Dr. Mikati is adjusting her VNS more. He has tweaked it twice in recent weeks. It is helping. But the

BIG Gigantic happy news is……………..

Rebecca is starting the Ketogenic Diet to control her seizures even further.

This is going to be a MAJOR undertaking for me – and a major change for her – but it will be worth it – just for the chance at fewer seizures (or dare I even dream….. no more seizures?)

If you know nothing of the diet – check out

http://www.charliefoundation.org

That’s probably the easiest way to learn the nitty gritty – its a High fat, adequate protein, low carb diet. Her meal plans are carefully calculated for her by a dietitian trained in this diet.

Because its high fat – the calorie count is strictly monitored so she won’t gain or loose weight. We have to monitor EVERYTHING. Did you know products like hand soap have hidden carbs in them! Yes this means our poor gummy bear addict child is going to have to give up her greatest love. If she understood – she’d probably say the sacrifice is worth not having those seizures anymore. It isn’t like we are talking a seizure every few days folks. We are talking 5 or more events A DAY. And we count a cluster of head drops as an event. A cluster of head drops has upwards of 50 to 75 seizures. She may have 2 or so of these a day. So the very harsh reality of things is – she is having over a hundred seizures a day. The hope – well of course I want a cure – I want no more of these things EVER.

I’d still be overjoyed if these seizures were not a daily thing. If she had a few events a week – or less. Heck yeah I’d call that a success. Her VNS helps with the one type of seizure quite a bit – the one that is kind of like a tonic-clonic (she does this odd posturing and trembling thing). Its reduced the intensity and duration of those. Usually using the VNS magnet can stop those. So what if – just what if …. the diet can eliminate the drop seizures. All those dang head drops. Or the sneaky atonic attack (imagine your child hitting the floor like a ton of bricks – just suddenly and violently crashing to the floor with ZERO warning). Yeah – I’d LOVE it if the diet helped those, since the VNS has never helped those.

The odds are good. Most folks do see reduction in seizures with the diet.Its just a matter of – is it worth all the effort. Time will tell. We go into Duke on October 4th to start the diet. Because the diet starts with a 36hour period of fasting it has to be done in the hospital. That and I’ll be getting TONS of training on how to weigh her meals, test her urine and everything else I need to know. (Hrmm I already feel like an honorary Neurologist, PT, OT, guess I can add dietitian to this list).

 

Wednesday, October 6, 2010 4:47 PM, EDT

 

Diet initiation going well. So far she is tolerating all the meals well. As mom – and the person who will be responsible for weighing out all her meals and such I’m finding it isn’t soo hard. A tad time consuming as I get used to it – but I’m also still in the OCD stage. Give me a few months and it will all be 2nd nature (it won’t take me 10 minutes to get the darn piece of fruit trimmed down the the exact gram amount).

Our only issue is drinking. for those who have followed Becca for a long time – and have followed us through previous visits to the hospital this comes as no surprise. This kid just gets MAD about being in the hospital. The way she exerts her will is to refuse to drink (which oddly enough she loves her sippy cups!). So sometime they will start giving her IV fluids at a really low rate to keep her from getting to dry. Hopefully this will perk her up enough to want to drink more.

Still way to soon to even predict if the diet is going to help with seizures.Stress is Becca’s big trigger – and she is stressed to the max right now. Please pray she drinks! If she drinks we might – just might get to go home tomorrow!

And prayers for all of my other seizure kid friends too! Several of them are also starting on this Ketogenic diet journey around this time as well. And other friends who are quite simply at a cross-roads. Lennox-Gastaut by its nature is resistant to medication. and of course doctors simply don’t know that much about how the brain works or treating seizures. So many of my friends I’ve made on this journey reach the point where the medical team starts to shrug their shoulders. It is heartbreaking for parents – and the rest of the family. Please – keep my friend Denae and her daughter Heather Riley in your prayers. Denae needs guidance. Becca, Heather, Emma, Oliver, Cole, and many many many others need your prayers for God’s ultimate healing. I have total faith that He can and will heal my child (the patience part is hard though). I don’t expect you to remember names but just as you say a little prayer for Becca later – please pray for other children with intractable epilepsy.

 

Sunday, October 10, 2010 11:29 AM, EDT

 

We came home on Thursday! Things are going well. I’m catching up on my sleep.

Becca is doing well with her meals (and her drinking).Yesterday I think I saw a grand total of two seizures? Pretty darn good if you ask me! Now that doesn’t mean another day won’t be worse – but I’ll take a very good day when I can get one!

I’ve been weighing out a bunch of her meals. The only thing I’m not preweighing is her cream and oil. Mainly because I’m paranoid about spilling the little cups in the fridge. (I’d appreciate tips from veteran Keto moms though).

Becca has lost her two bottom baby teeth! She had her permanent teeth come in behind the baby teeth. The baby teeth had been loose for quite a while. While in the hospital Becca was biting on a toy and nearly pulled out one of them. I had to get a nurse to come in to help me so I could finish pulling the poor tooth (it was dangling at that point). Becca was NOT happy. Yesterday I pulled the other tooth since I could see she would push it all the way forward with her tongue. I was so paranoid it would come loose and she’d swallow the thing. I can tell now she is so much more willing to drink from her cups. I think that was part of her problem those few days in the hospital. Those teeth were SOOOO loose that any pressure from a cup had feel odd.

Becca has had a blast playing with the Mylar balloon that I got her while she was in the hospital. This kid LOVES balloons. its so cute. She has carried it around the house with her during the day.

 

Sunday, October 17, 2010 10:58 AM, EDT

 

So far things are going well on the diet. I am seeing a reduction in her daily amount of seizures – which from all the data I’ve read means that if we are seeing that now gives GREAT hope that over time, and possibly with tweaking later, it could work for her. This morning I went in to get her out of bed had one of those things parents dread – POOP everywhere. Her diaper had slid off and well EWWWW. I scooped her up and went straight for the bathroom. Poor hubby was still in our master bathroom taking a shower – so I had to kill his water pressure/temp but oh well! But the awesome spectacular news is …. the child who HATES bath time – esp the emergency dump you in the tub and hose you down – this did NOT cause seizures. Every other time we’ve had to do this to her, its caused seizures. I even bathed her without strapping her into her bath chair and she did fine. Sure she screamed and hollered about the incident. But no seizure. Yes – a little later in the morning she had one, but we are still seeing about 2 a day. And I don’t know that the one 10 minutes later was directly related to bath trauma.

I am just so happy!

Becca is doing great on the diet. Still some issues with her seeing David and I eat. I don’t know that she is hungry when begging for food when we eat. She isn’t begging for food other times of the day. Its just she is used to eating off our plates. So its an emotional/behavioral thing. For the past few years I’ve fed her off my plate at mealtime. But as for eating her new meals she is doing good.

Yeah, they are kinda strange – lots of cream and oil. But I’m trying to keep them as normal kid friendly as possible.

And I can easily whip the cream and oil – add a few drops of her allowed sweetener and freeze – Viola – Ice cream! Esp if the meal plan I’m doing for her includes fruit (as opposed to a Veggie one) – I can mix in the fruit into the ice cream! Otherwise there are a few allowed extracts or flavorings I can add.

Her meal a few nights ago was an Egg Souffle’ (Egg, cheese, butter) and Raspberry ice cream.

Sure her portions would make most people shudder – but they are calorie balanced for her. But its a creative, simple meal plan she LOVES!For a meal while visiting the in-laws yesterday, I’d made and took along a Chocolate Cheesecake. yeah – every ingredient is weighed and calculated so its a different kind of cheesecake (still basics of cream cheese, heavy cream, oil, Cocoa). She LOVED it! gobbled it right down.

I hope my sharing a bit about WHAT she is eating has been informative to those who know nothing about the diet, or have heard “its gross”, maybe think its all cream.

Its all about attitude. We are taking the attitude of we know its kind of weird, but its going to help! We don’t like to ever tell Rebecca her food, or medicine is gross or icky (no matter how gross I think it is!). So yeah – eating a spoonful of mayonnaise may not be to my liking, but she doesn’t seem to mind.

Keep the prayers up. Lastly I’d love to leave you with the lyrics of a song that means a lot to me lately. Its from a Christian band called Kutless. The song is called “What

Faith can do”

“Everybody falls sometimes

You gotta find the strength to rise

From the ashes and make a new beginning

Anyone can feel the ache

You think it’s more than you can take

But you’re stronger, stronger than you know

And don’t give up now

The sun will soon be shining

You gotta face the clouds to find the silver lining

I’ve seen dreams that move the mountains

Hope that doesn’t ever end

Even when the sky is falling

I’ve seen miracles just happen

Silent prayers get answered

Broken hearts become brand new

That’s what faith can do

It doesn’t matter what you’ve heard

Impossible is not a word

It’s just a reason for someone not to try

Everybody’s too scared to death

When they decide to take that step out on the water

But it’ll be alright

Life is so much more than what your eyes are seeing

You will find your way if you keep believing

Overcome the odds

When you don’t have a chance

(That’s what faith can do)

When the world say you can’t/ It will tell you that it can “

 

Its a beautiful song that has given me so much hope and inspiration for Rebecca’s healing. Our hope doesn’t end. It doesn’t matter what the statistics are about a cure – Impossible – nope! We will not quit!

I hope all of my friends out there facing the hurt and pain will find their silver lining soon.