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.

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Baby got a new set of wheels, and a fresh new battery.

Rebecca got her new wheelchair not long ago.  It is so nice to have a new chair that fits her better.  Her new wheelchair is a Convaid Rodeo.

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.

 

 

(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.