Medications

I set out this morning to find a specific list of seizure medications.
Sure, lists of all available medications is fairly available online. Yet I wanted a list that better linked the Generic name with the brand name. Not a list that had 100 some odd choices, but in reality there are 50, because many are the same thing. For instance the list having both Topiramate and Topamax.

Since I couldn’t find such a list easily I made my own – modifying from one of the complete lists.
This list is taken from SeizureTracker.com – so the credits go to them for the description of each medication
So without further ado – here is the file.
I hope someone else is able to find it useful. This file is shaded with the meds we have tried, are currently using, or not tried.

you will have to click the link to view the file. (it is a standard XLS file).

Seizure Medicaion complete list

The list of available meds is constantly changing. Not all of these would work for any child. Some are not good for kids at all. Most are better for certain seizure types (and are known to make others worse). So PLEASE take this list as that – just a list of the meds that are out there. Do you own research. Talk to your doctor.

I made this list so I can go to her Neurologist better armed with what options I might like to try next. I am really wanting to avoid Felbetol, simply because of the scary side effects.

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.

A bed all of her own

One of the hardest times of the day for a parent of a child with special needs is at night. Keeping your child safe in such a way that everyone gets a restful night sleep is a challenge.
There are many special needs beds available, and yes you can often get insurance to pay for these items.
However, David and I wanted something different for Becca. Something really special. Something that did not scream “I’m a piece of medical equipment.”
We brainstormed. We looked around a beds and realized we could adapt our own. We thought about a basic 4 poster bed. At the time that style wasn’t very popular, and it seemed for most of them the post was rounded. That would make attaching any kind of railing more difficult.
We turned our attention to bunk beds. We found one that would be perfect. the headboard and foot board were fairly solid. The best thing behind the idea of a bunk bed was if the day came when Becca no longer needed her special bed we could revert it to a regular bunk bed, or even better in the style we chose, just a twin bed.

So David got to work designing railings. We decided to go with a piece on the back that is fixed. The front of the bed has doors that open. The design is like barn doors.

*edit* If you click on some of these pictures you can better see the note I put on them explaining some things in detail *edit*

Full shot of her bed

Full shot of her bed

We put multiple latches on the bed,in an attempt to make it escape proof. In our case, Rebecca does not have very good fine motor control, and it is unlikely she intentionally unfastens the latch. However we put more than one on there to reduce the odds she would accidentally open them all.

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Latches

Latches

David took boards that would fit around the horizontal slat that is the main support for each bed. Lucky for us the frame of the bed had bolt holes already for you to attach the railings that came with the bed. We used these to attach the frame for her railings.
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I took a picture of the hinges so you could see that the bed has the 2×4 that attaches to the bed, a smaller frame built to hold the doors of the bed, and then two panels that are the doors.
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We do not have a bed in the top bunk. Becca likes to stand up on bed and this allows her to stand and play in bed. However, there is no reason why you can not. Nothing is done to the bed to affect its use as a bunk bed.

This shows the back of the bed. Still railings, but it is a solid piece.
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This picture is from when Becca first slept in her bed. At the time I had the padding I mentioned. I have since taken that down (it proved to be more trouble than it was worth the first time she got sick).

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I’ve shared many of these pictures in special needs groups many times. I often get asked for more information. Therefore I thought it was only reasonable to create a blog detailing the information so that it would be in a format that is easy to share.

To this day Becca loves her bed. It is so nice knowing she has a safe place. I am sure many of you are familiar with that point you reach some days where your child just needs a place to go to decompress. A place all their own. For a child like Becca I can’t just send her to her room. I can’t leave her unattended. Now, when she reaches that melting point I can put her in her bed, turn on her music and quietly leave the room. 9 times out of 10, she plays in there for a short time and then falls fast asleep, just what she needed to do but was to stubborn to do otherwise.
When she wakes up in the middle of the night, as she often does, she is content to play in her bed. She has many stuffed animals, and we even have the crib toy from when she was a baby. She still loves the Fisher Price Ocean Wonders Aquarium.

You can also see we’ve painted some decorations on her bed, as well as made use of those vinyl wall clings (her room is decorated with them and I took some of the extra and placed in her bed).

I hope this inspires another parent in search of the perfect bed for their precious child.

One tough cookie

We were about 5 minutes from getting into my car to drive to Raleigh to pick up Grandma and then head to Lake Gaston for the weekend.
Then it happened. I was on facebook when I saw it happen. I knew she was going down with a seizure. I half screamed, half let out a gasp. I knew she was going down HARD. I closed and set down my laptop and raced to her. She was SCREAMING. Since I saw her grab her face near her eye, I did a quick check of that area before I let her bury her head into my chest as I did my best to comfort her. “Shh Becca, its okay.” “You’re okay baby, Momma loves you.” “I know that was scary.” All the usual things I say to her. I probably even sang her our song. It took her longer than usual, but in a few minutes she was calming down. Then I cued into something. I could hear the sniffling in her cry. Odd, I thought, she doesn’t usually cry real tears, and never gets the runny nose from crying hard. I pulled her back away from me so I could check her.
Then I saw it, blood. And a lot of blood. I panicked, I admit. My dress was covered, she was covered. I scooped her up and went for a tissue.
I discovered the source of the bleeding. A badly busted upper lip. I put pressure on the lip as best I could with a tissue. Not an easy task with a kid that barely even ever lets you wipe her messy face. She HATES having her head touched in any way, shape or form. I grabbed the phone and called her pediatrician office.
God Bless them. They are so great. I knew the nurse advice line could mean an hour or so before someone calls back, so I took the next logical steps. I pressed the button for appointments and explained to the receptionist what happened and able to be put through to a nurse right away.
I giggle remembering because I explained the situation that she had a seizure and fell. Their first concern of course was the seizure. Was it over. My thought “heck lady seizures are multiple times a day, every day, that is the least of my worries.”
She gave me advice to hold pressure for 20 minutes. I explained it had mostly stopped bleeding by then, it was kind of oozy (you’d get blood when you pressed the paper towel to it. By then I had gone and gotten some paper towels I ran through cold water before bringing to Becca.) As long as it was stopping bleeding, and since it appeared to be fairly surface there was no need for stitches. With a kid like Becca they can’t be done at your local urgent care. Nope, it would require a trip to the ER. PHEW we seemed to have escaped.
I called Grandma and let her know we’d be there a bit later, I needed to keep an eye on Becca for a bit. I told her what happened. I had already long since sent hubby a message (did that while on the phone with the Ped).
Within minutes my resilient kiddo was up and “running” around the house again. She was still wobbly, from the seizure and the trauma. I decided I wasn’t risking a second fall on her fresh wound so I scooped her up and loaded her up in the van.
We got to use her new EZ-On pro vest . This replaces her car seat. It is actually better for her, it means she can have a bit more freedom in the seat (including recline of her back seat.). But she still gets the positioning support to keep her upright and not leaning out of the seat.
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my new seat

my new seat


I will say I have since figured out I wasn’t quite using the car’s seatbelt right, but these were taken the day I got her new harness.

Here is Becca’s lip over the weekend.
poor widdle lip

Becca LOVES her boat rides. So much so this was her opinion after the ride was over and it was time to go back to the house.
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Notice the GLARE in her eyes. She was one mad little girl.

She had a great weekend though. Swimming and boat rides, and of course being spoiled by PopPop and Grandma.

I took her to the Pediatrician Monday morning just to check her lip. I was worried about infection since it had some funky color to the wound. Thankfully he said mouth injuries “turn all kinds of funky colors as they heal” (yep his words), but it was better safe than sorry and to do antibiotics instead. God Bless a pediatrician who is cautious with Becca.

Her lip looks so much better with each passing day.
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She is one tough cookie. Even right after her injury she was grabbing her sippy cup and drinking like nothing happened. That was my clue that we probably didn’t need the ER trip after all!

All this being said with how awesome she is, and how quickly she is healing I went ahead and have gotten her in to the Orthotics company to order a new helmet. I know her helmet from last year was a bit snug anyhow, so it was time for a new one. I decided to move on to the hard shelled helmet with a face bar. Her little mouth is too precious, and must be protected. She has far to many seizure events lately where she just gets very off balance and stumbles around. We aren’t simply fighting drop seizures anymore.

Please continue to pray for Becca as this demon called LGS continues to change and keeps us on our toes.

Homeschooling

I feel I made the right choice to Homeschool Becca. She has had a really rough summer.
Becca was in a year round school. She would have gone back Mid July. Instead we’ve been home. She continues to have more rough days than good days.
Not simply the seizure monster, but its effects. Today she has slept and seized (and simply laid on the couch staring off into space).
School was hard on her. She sleeps a lot during the day. She was continually exhausted.
Now with David coming home for lunch and her having a bit more energy in the evening they get to see each other more.

Still trying to get a handle on exactly what I “do” with her for our schooling. She is so cognitively impaired.
hrmm. cognitively impaired. I’m still not used to writing that instead of Delayed. But the fact is Delayed means she will catch up (or close to it). However that is not the case for Becca. As a result of her seizures parts of her brain are being destroyed, never to be fixed. It is call Degeneration. It SUCKS. I have no idea how much, just that it shows up on her MRI report. You know those things a Parent reads but no doctor ever bothered to tell them. Yeah – that.

Tomorrow and Friday I take her for IVIG again. I have one other trick up my sleeve for the immediate future. When she first started IVIG it was when her dose of lamictal was adjusted. But the caveat is, the RX was not “brand name required” so she got generic. I found out its specifically the manufacturer Tarro. I’m going to talk to her doctors and get her back on this specific “brand” of generic.
Who knows, if this helps we will play with her other meds with the manufacturers.

Becca and I are looking forward to another weekend up at Lake Gaston. We leave Daddy at home and go spend a weekend with my parents. Becca LOVES the boat.
oddly she hates the wind blowing in her face from a car window, but get her out in the open air and sunshine and she just hits total relaxation. She even understands “go on boat ride”. Her face lights up with excitement!
Only gummy bears have an equal effect on her.

I’ll try to be better updating!

Remembering

When Becca was a baby I used to sing “Ba Ba Black sheep” to her. when she was a colicky infant it was what calmed her down, singing that over, and over (and over) again.
Over the past year or two I’ve had a different song I’ve sung to her. Just a silly one I made up.
I’ve sung other songs with the same melody as “Ba Ba Black sheep” (or similar). Not much reaction.
Last night I sung that to her again and her face LIT UP! She got the biggest smile. It was so sweet to know she does remember.
I should add to I change up the lyrics a little bit for her.
Ba ba black sheep have you any wool
Yes sir, yes sir three bags full
One for the master,
one for the dame
and one for the little Becca who lives down the lane.

Her silly song is as such
I love my Becca doodle babe (optional kiss on cheek)
Becca doodle babe (optional kiss on cheek)
Becca doodle babe (optional kiss on cheek)
I love my Becca doodle babe (optional kiss on cheek)
Till the end of day a a ays (kiss on cheek)

The tune is kinda like the chorus to that old song “Personality”

My little Becca bunny does not care that her momma can’t carry a tune at all. She just loves when I sing to her.

Godzilla girl is loose in the house

Becca has this growling noise she makes, very deep in the throat. We call her “Godzilla girl”. She had made this noise for years when she is happy or excited. It is her way of expressing herself. Lately she has taken to doing it for hours on end, the better part of the day, every day. Gets kind of old – quick!
I am pretty sure it has to do with her not tolerating one of her seizure medications. It has been worse since we went up on the dose.
Like any good parent I was calling her doctor about this. Trying to get them to adjust the dose or give her something to help relax her. We had to do a med, Clonidine, when she first started the Onfi to help with her behaviors. We did a TINY dose at night for about a month and didn’t need to continue.
So naturally I wanted to revisit this medication. I had zero luck contacting her Neurologist and was eventually advised to take her to the ER. I’m not kidding, they actually told me to take her to the ER.
So I did – we were already at Duke at the Children’s Health center when this bit of advice was given, so I just pushed her on over to the ER. There she was quickly treated and they agreed to reduce her Onfi and give a RX for clonidine. (See this Duke Neuro – was it REALLY that hard to do this over the phone with me, or get the PA to spend five minutes with us to give us this??)
Overall her growling was a bit better for a few days. She is going strong as I type this, but I’m doing my best to block her out. (she is also happily playing too)

Other than our mis-adventures dealing with Duke we have had a great summer so far!
Last weekend we went up to Lake Gaston and spent the weekend with my dad, Jacky and another family relative, Cathie (she is my dad’s cousin, and a very close family member).
We had a GREAT long three day weekend. We all go there Thursday night and had fun fun fun! Thursday when it was Jacky, Becca and I we went out for a swim. Becca loved her new float I rigged up
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I took a regular big kid/adult float ring and had sewn straps around each side to attach in a pair of swim shorts. This gave her a seat in the ring – much like the baby ring floats have. We added in her life jacket to give her a bit more torso support.

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Pretty much the height of relaxation for her! We also had multiple boat rides (a favorite of Becca). She got to ride on my dad’s new golf cart
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and we had more birthday celebration (Becca just turned 8!!!)
All in all it was a great mini vacation. Just what we needed!
I guess even Godzilla needs a vacation now and then.

Oh – the Monday after we got back she had her 2nd IVIG infusion. It was a LONG day up in the day hospital at Duke, but she was great the whole day. I’m so excited about this treatment. IVIG is being used to help treat her seizures. It is greatly reducing her daily number of seizures.