Keeping everyone on their toes

I sometimes find it hard to write new blog posts.  Becca goes long periods where things stay more or less the same.  She has her own patterns of periods where seizures are much better and periods where they are much worse.  No real explanation for either.  She has periods where she is extra sleepy for several days (and she is a kid who normally sleeps quite a lot).  It gets hard to think of anything to write about here.  I use Facebook a lot to keep friends and family updated with the day to day things.  A great day here, a bad day there.  All the adorable things Becca does to make me happy.
She is into another period where she is babbling more.  I really enjoy hearing her “talk”.  Her mood has been much better too, ever since we added Zoloft.

Since my last blog post, Becca has done a course of IV steroids.  She went once a month (for three consecutive days) and received IV steroids.  David and I had hopes this would help her seizures since as an infant the ACTH steroids helped so much.  Unfortunately it was another failed treatment.

We’ve had a few problems lately as well.  A routine blood draw in January showed Becca had low Sodium.  Her Neurologist lowered her dose of Trilpetal and we were referred to Endocrinology and the follow up test came back a bit better.   Becca had her follow up appointment with Neurology in April and again her Sodium levels were checked. I went ahead and switched Becca’s “juice” from Kool-Aid (diluted to 1/2 strength) to Power Aid Zero (which I also diluted 1:1).
It seems I made a good choice.
Neurology didn’t follow up with us from that blood draw, but I could see her results through the online system and saw the Sodium was still low.  It shocked me, since I knew that particular blood draw was done after she had received her steroids that afternoon (they are given in a standard IV saline solution).

A couple weeks ago we noticed Becca was coughing more and more.  It became apparent that something was wrong with her VNS.  For those who don’t know, the VNS is sort of like a pacemaker for the brain.  There is a small implant in the left chest wall, with wires going up to the Vagal Nerve.  When the device activates it stimulates the Vagal Nerve and can help seizures.  The device is set to cycle at a certain interval.  The timing of the stimulation as well as the intensity of the pulse vary from patient to patient.
Normally a patent (or in Becca’s case, a caregiver) would “swipe” the magnet over the VNS implant in her chest to case it to activate an extra pulse in addition to the normal cycle.
Likewise, the VNS can also be temporarily turned off by the patient if needed.

To turn the VNS off you simply hold the magnet over the implant for 60 seconds.  By taping the magnet to her I was able to turn off the VNS.  The coughing stopped.  I let her rest for a few hours (no coughing at all during that time).  I tried taking the magnet off and the coughing came back, right away.  Every 5 minutes, when the device turned on, she had a coughing fit.  I taped the magnet to her again and called her Neurologist office.  I admit, I was very panicked and nearly in tears.  We were told to come in right away.

The very fabulous Nurse Practitioner for the clinic tried several settings to see if Becca could tolerate anything.  In the end we had to leave the VNS at its lowest setting.  We decided to give it a week, and have Becca start on Allegra.  The hope was that she had some allergies creating just enough irritation that the VNS wasn’t tolerable.
I also mentioned the Sodium levels and another blood test was ordered to check the Sodium.  We agreed I’d give her undiluted PowerAid to drink.  I got a call the next afternoon telling me that it was lower than the April visit and was 124 and I needed to take her to the ER.

The ER trip was a waste of time.  They eventually rechecked her sodium levels and they came back at 130.  That number is still below normal, but it isn’t close to the danger zone (120 is considered dangerously low).  Once again they decided to lower Becca’s Trileptal dose.

Today we went back to see if Becca would tolerate having her VNS turned back up.  Unfortunately as soon as we tried the next highest setting (the 2nd from the lowest) she started coughing again.  Her VNS was turned back down to the lowest setting.
Our next step will be to visit an ENT.  Hopefully the ENT can determine if there is anything else going on in her throat to cause this problem.  As for her Sodium levels, they have been checked again and we’re just waiting for the results.

All of this back and forth has been stressful for Becca.  Thankfully she hasn’t been having an increase in seizures.  She has clearly let me know she is upset by growling and chewing on her hand again some (thankfully nowhere near as bad as before).

These kinds of ups and downs are our reality.  Each day is filled with subtle nuances that leave me worrying if they are possibly part of some larger issue.
Are her days of sleeping more part of the low Sodium?  How much has her periodic times where she will go all day without peeing related to the Sodium levels?  Are those bad seizure days related?   It seems like her Sodium has been chronically on the lower end (even before it fell below the standard range of values).

It also goes to show you that just because you have been on a medication for a long period of time does not mean side effects can’t creep up later.  Evidently low sodium issues is a known possible issue with the Trileptal.  She has been on this medication for several years.   She got the VNS placed in 2009.  We had some issues last year, but it was determined the battery was getting low and the thought was *maybe* its just not functioning correctly as it gets low.  Once the VNS was replaced she did fine.  We thought the problem was solved.  We can’t blame it on the battery now, its still showing 100%.

In the meantime I plan to just enjoy Becca and all her little things day to day that bring me so much joy.  I’ll try to not worry about these bumps in the road.  She is snuggled up against me right now, snoring peacefully.  I am very blessed.  Even if I don’t have much to write about often.

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.

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.

Finally – no more stairs!

As Becca has gotten older (and bigger), one of our biggest challenges has been the fact that we lived in a two story home. The bedrooms were all upstairs. Becca can sometimes walk upstairs, with a lot of support. It all depended on the day, and her energy level. She does not have the vision skills to safely walk down stairs. This meant that every night someone had to get her upstairs (usually carrying her), and every morning carry her back downstairs. She now tips the scale at 64lbs, so this was no easy task.
This past fall David and I started the journey of looking for a ranch style home for our family. We needed to eliminate stairs from Becca’s daily routine. We ran into multiple issues over the ensuing months. Houses seemed to either sell faster than we could possibly put an offer in to purchase, or in two cases we found significant issues during the inspection. We finally found a home that met our needs. The day before Becca’s 9th birthday we closed on the house, and the day after her birthday the moving truck came.
It has taken quite a bit of getting use to for Becca. As much as David or I talked to her and tried to explain, we don’t think she fully understood. It has now been about two and a half weeks and she is certainly more into our new routine. I think it has helped quite a bit that most of the initial chaos has died down, and even David and I are into more normal routines.
Becca already has a favorite spot.
It is much like her favorite spot at our old house, the sunny spot at the front door.

At this house she can watch all kinds of people walking by.  This neighborhood has many people who have dogs, so there are dog walkers out all day. Amazingly we never hear dogs barking, so they are all well behaved dogs with attentive owners who don’t let fido bark for hours on end.

Our dining room, with plenty of space for Becca’s special chair

That is a shot standing from the dining room table, looking across our living room (and yes that is Becca, sitting in front of the door).

First night in her new room,

Picture of the house

Sitting on our front steps

 

We are all so very happy here, and it is exciting for Becca.  Even if her mobility declines than this house should be great for her for years and years to come.  you can see there are just a few steps to the front door and only one from the carport into the kitchen area.

Overall Becca is doing well.  Her seizures are somewhat stable for her (at her baseline). They’ve been a touch higher with the move, but we know there is the external stress on her, and that accounts for more seizures, yet overall she is doing great.  She had her 9 year old well child visit.  Becca weighed in at 64 lbs and is about 50 inches tall.  Height is rather hard to measure on her since she doesn’t understand how to stand up nice, straight and tall.  There is no doubt she has had some recent growth spurts.  I’m actually putting her into 10/12 clothes.  This is especially helpful for shirts since girls clothing is horrible these days, and if I want her to have an iota of modesty we need to go up in sizes.  Thankfully for shorts and pants she is most comfortable in leggings and those can be darn near any size (including ones from several years ago).

It has been amazing as I’ve been packing and unpacking the things I’ve come across. I’ve shredded a ton of old documents (we don’t really need 9 years of Insurance EOBs).  I’ve found things from her first hospital stay when she was diagnosed with infantile spasms, including the pharmacy receipt for the ACTH treatments she was on.  I plan to scan that in for Facebook one week for TBT (Throw Back Thursday).  I know other Epilepsy parents will get a kick out of that.

You are not alone

Being a parent of a child with special needs is hard. In fact, at times it just plain sucks. There is one bright side to all of this. Thanks to the internet I have made many new friends.  Sure friends can be a term used loosely. Most of these people I will never meet. Yet honestly, I can not imagine my life without these people.

It does not matter where a person’s support group comes from, or where they meet. All that matters is that we, as parents find one.

Let me get this out there – I know some people don’t like the term “Special needs”, but face it our kids are not normal.  they were either born with complex medical conditions or developed such.  As a result of these issues you’ll find “our” kids often suffer varying degrees of cognitive impairments.  The needs our kids have are special.  A normal child doesn’t take a shitload of medications every day, or have a closet full of medical equipment. There are not many other names out there to describe kids like ours.  So special needs it shall be.

Most of the special needs groups I am involved in are specifically related to the seizure disorders Rebecca has.  Some are for the one she had as a baby, which is Infantile Spasms.  She “outgrew” that diagnosis, and is now considered to have Lennox-Gastaut Syndrome.  I stay a member of some groups for Infantile Spasms simply to offer support to parents of children newly diagnosed, as well as staying connected with friends I’ve made.  I find a different kind of support in the group for Lennox-Gastaut.  There I am more often on the receiving end, instead of the giving end of support.  I connect with parents of older children and teenagers.  Finding out what may be in store for my child is a huge help.

Becca has had seizures since she was 2 months old.  She has always been delayed.  I’ve learned a few things over the years.  Nearly every other parent I’ve met along the way has the same fears.  The same concerns are being faced over and over again.  I chuckle every time the parent of a severely delayed 2 or 3 year old gets shocked by sudden odd behaviors.  The terrible twos (and even worse terrible three’s), does not skip a child simply because they are delayed.  The child is still emotionally that age.  (Watch out mom and dad – 4 is far worse than 2 or 3 – no one warned me!).
As parents of special needs kids we all worry every time our child isn’t eating enough.  We worry when their schedule gets off.

But chances are there is another parent out there who has been through the same thing.

That magical time of night

** I originally wrote this a year or so ago and just now publishing.  Some stuff may be out of date

One of the best things about being a parent of a specials needs child is I am able to spend many magical moments with my child, most parents do not get.
Rebecca is a snuggler. She loves to be held, cuddled, kissed. In fact, she has little to no fear of strangers, providing they are willing to cuddle her. This is a huge blessing when it comes to doctors visits. If they will hug her (and perhaps let her play with their name badge), she considers them a friend.
One of my favorite times of the day is when I go in at night to give her medications. She has already been asleep a couple hours usually. I enter her room and open the doors of her custom made special needs bed,

Becca is fabulous about taking her medications. Usually you just get her to open her mouth and you can slip them in, and she just swallows them. She barely has to wake up. Most adults don’t even have that easy of a time taking medications.

I love to nestle up to my sleeping daughter. I get to give her kisses and hugs while she sleeps. I sing her songs, including one I made up just for her. “I love my Becca doodle babe” always gets a big smile from her. It is a time to tell her how much I love her. This is a time to let her know how beautiful she is, and for her not to let anyone ever tell her different.
I know the time will come in her life when the world will be cruel to her. People will be downright horrible to her, all because of her special needs. I want to build up her self esteem so high that no man, woman or child can every break it down. I want her to believe she is beautiful, that God made her Perfect.

I love talking to her about what she might be doing the next day. For instance, reminding her the next day is PE and she gets to see Ms. Barbara. I talk to her about being good at school, and listening to her teachers. I remind her to show them how smart she is, and do her work.
Or maybe it is a Friday night, so I get to tell her that tomorrow is the weekend and she gets to spend all day with Mommy and Daddy.

I speculate on what she might be dreaming about, or what she will dream about. Perhaps she is dreaming about running and playing on the playground at school. Maybe tonight it is about a giant pool of gummy bears.

I am blessed to just sit there beside her bed for that time. maybe 10 minutes or so each night. Just 10 minutes of nothing but Rebecca and myself. The quiet stillness of the night. A time to put my arms around her and pray for her total healing.

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.

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.

 

Great Bike Giveaway

Its time for the annual Friendship Circle of Michigan Great Bike Giveaway.
this contest is in its 3rd year of giving away bikes to special needs kids.
Adaptive Bikes (or rather Tricycles) are very expensive and not something most families can afford.

A bike like this would be a huge benefit for Rebecca. It would allow her a way to get her legs and body stronger.
She can walk on her own, but does not walk well. She is very unsteady.
Because of her seizures, a regular bike would never be safe for her.
Adaptive bikes offer special seats that give them more support, as well as seatbelts. Even the mechanism of how the bike works is easier for kids like Becca. If I gently push the bike the pedals turn, so she can learn how to ride (you can strap their feet to the pedal, for safety).

PLEASE consider voting for Rebecca.
https://www.friendshipcircle.org/bikes/2014/03/rebecca/

Not only voting for her, but sharing the link. Share along social media sites. Email friends and family. give us a shout out on twitter (tweet the link – my twitter name is Mom2_Becca_k)

Thank you so much! Hopefully later this month I’ll be able to do another post shouting that we won!

** Just a quick edit to add, we’ve made it past the 1st step – getting 50 nominations. Now its time to get as many votes as possible.

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

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.

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.

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.

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.

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).

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.