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.

She didn’t want me to take her picture.

2014-08-28 12.48.40

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.

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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.

2014-02-26 12.53.55 2014-02-26 12.54.12
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.

 

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.

Summer break is almost over

This is our last week of summer break.  Its been a nice 5 weeks.  We’ve had a nice birthday celebration (simple, no fuss), a trip to the lake with lots of swimming, fun at home, playdate with  friend.

The most amazing thing this summer break has been how her skills have been progressing. Each day she amazes me more and more how much I see her use her left hand.  Walking around holding a toy in her left hand (and not her right).   Using her left hand to hold a cup. Speaking of cups, we rejoice that sippy cups are gone!  I’ve kept a couple around to have when going in the car and I need to give her something to drink.  She still needs the spill proof valve when someone isn’t right there with her.  Otherwise its all big kid cups.  Open cups, cups with straws, cute kiddie thermos cups.  The thermos cups are our next step, since when out and about you may want a cup you can have a good lid you can close.  The open cup is still a learning process.  She is prone to tipping the cup to much and giving herself an unwanted bath.  Someone needs to have their hands right there to help her guide the cup.

Yesterday she actually enjoyed finger painting.  This is a girl who has always balked at arts and crafts activities.  We’ve still got a long way to go on coloring.  But I have the “right” crayons now.  They are these super cool crayons called “Crayon Rocks”.  Now I know you may think that you can easily melt crayons into smaller “rocks” to hold.  Yet that isn’t what makes these crayons so great.  They are awesome because of how easily they write on the paper.  Such light touch and you have coloring.  It is perfect for kids who may rake the crayon across the page and not understand applying pressure to the crayon.

Seizure control has fallen victim to the facts of LGS (her seizure disorder).  Seizures are hard to treat, and often are resistant to medications.  A medication may work for a while then stop.  We’re seeing this now with Onfi.  Heartbreaking, but all the while I always feared we were simply in a honeymoon period.  I was determined to enjoy it while it lasted. Nothing more, nothing less.   Onward and upward to the next option I guess.

We went to the lake over summer break.  I worked out a new situation with some floats for Becca and she really enjoyed some new freedom in the water.  As usual she loved the boat rides.

In a month my brother and his family come to visit.  I haven’t seen them in about 8 years.  Yep, that means they have never met Rebecca.  I’m so looking forward to seeing them all.  My nephews and nieces are all growing up!

Well, I reckon that is about everything for the past 5 or 6 weeks since my last update.

Her brain is bored?!

I know my title sounds utterly crazy. Beyond crazy. BUT stop and think for a second. Her little brain has had so much seizure activity for 6 1/2 years now. She was having an average of 4.5 events a day. If you counted her head drops as individual seizures instead of singular events that number shoots up to 50-100 seizures a day. Yes, you read that right. Those head drops have anywhere from a dozen or so seizures to upwards of 50. Thanks to this new medication they are GONE. Her other seizures are doing better as well. This means that her brain is no longer in the electrical firestorm of seizures all day long. Now that this has happened her brain is having to re-organize. Remember this is a child who has had seizures almost her entire life. Her brain doesn’t really know what it is like to not have this firestorm. Therefore we’ve been dealing with a firestorm of a different kind as a result.
Remember that manic laughing I mentioned in the last update? Things have gotten a bit more difficult. For one thing we can not keep her from chewing on her left hand (she will chew on her right hand, but not so much). This is more than sucking on her fingers – she is shoving her whole fist in her mouth at times. She has ended up getting little sores in that webbing space between the fingers. I went out and bought a kiddie rubber gardening glove to cover her hand. We had to have something to keep the area clean and dry so it can heal. We’ve TRIED behavior modification. She laughs when you tell her “No hand” or “stop”. When you take her hand out of her mouth, she waits a few moments and puts it right back in. Smack her hand? Ehh she lets out a noise of displeasure and goes right back to chewing. She HAS chewies. She is simply preferring the sensation she gets from her fingers right now. I don’t know why.
Then there is what I call the Becca body meld. She doesn’t just try to snuggle. She tries to physically become meld with you. Like she can’t get close enough. She has a highly annoying habit of reaching her left arm around your neck so incredibly tight. So imagine the child laying chest to chest with you. Her knees pulled up. She takes her left arm and wraps it around your neck so tightly that her little 6-year-old arm wraps ALL THE WAY AROUND and she can then shove it in her mouth. CHOKE! And heaven forbid you try to stop her as she is doing this. She is incredibly strong. And many times in her attempt to get her arm around you she is clawing you. So yeah, when I say my child is beating the crap out of me, this is what I mean. She will literally try to climb up me when I am walking into the other room.
I was so glad to drop her off at school yesterday. But much to my chagrin the report from her teacher was she was in a great mood and her behavior was great all day. Ohh gee thanks kid. Beat up on mommy and daddy all weekend and be nice to your teachers? I really feel the love!
BUT – we did start her on a new medication to help with these behaviors, that according to the neuro are OCD and “Autistic-like” (No one thinks Becca is autistic though). We’ve not been on it a week yet, so it’s too soon to tell. So far I think I am seeing some decrease in these behaviors.

Her PT appointment I mentioned last update went fine. We decided to go with getting her “real” high tops (not converse cloth ones). There would not be much difference between these and SMOs (supra-malleo orthosis – otherwise known as orthotics that are only ankle high). The shoes should give her that same support and input. If we don’t find that these help we will order her SMO’s. The PT doesn’t want to go with full AFO’s. For my non medical friends – the full ones would come nearly up to her knee. The thought is those would limit her mobility more. She is getting more used to her new shoes. Plain high tops, but of course they are heavy and cumbersome. I mean come on – how many of us can easily walk if someone slapped on a pair of hiking boots. It’s not much different for her little feet.

Well I think that is our update for now. Eye Doctor tomorrow.

Pray for us that her behaviors normalize. Pray that our miracle with Onfi continues. And of course lift up all of our other Epilepsy friends, those doing good now, and those who are having a hard time. It is a long hard battle.

I just can’t get over this

Becca has only been on the new medication – Onfi – since January 15. Less than a month. In that month she has done amazing. Her seizures have been fewer. She has been chatting so much. Her attempts at communication are continuous. She is so vocal. It makes me beyond happy. Only now and then do we (Daddy and I) hear utterances that sound like real words. Sometimes it sounds appropriate for the situation. For instance last night she was chatting away and David repeated back sounds like she made, He said something to her along the lines of “I don’t really know what you said”. David and BOTH heard her say “why not?” I couldn’t help but laugh. Other times we may hear “Daddy” and then a series of babbles we don’t understand. So clearly she is trying to tell Daddy something. So cute!
I got out her iPad and turned on one of the talking animal apps (for the record it was Lenord – a big blue furry monster). Becca started making her growly noises. She got such a kick out of it repeating her sounds. She would make more noises. Each time it repeated them she became more delighted. I had to restrain myself from shaking with laughter at her delight! She got more and more excited. I loved the level of cognition that I saw with this app.
I’m also seeing improvements with her daily progress reports sent home from school. (I don’t have a copy of one in front of me, so its hard to give many examples). But one continual problem Becca has is always picking the object on the right side. As near as I can tell, she is starting to do better, or at least crossing mid-line to choose the right – which means – using her LEFT hand. WOOT!

We’re still not sure why she has had some issues with her gait. She seems to have, what was best described by another parent as spaghetti legs. Especially her right leg. I took her for an orthopedic appointment this past week and Dr. Fitch cleared her. He does want her to see a PT for an AFO consult. Thinking they could possibly give her more stability. With that in mind we will see her old PT later this month. Lisa Mangino (aka Gino) is the one who saw Becca back when she was younger, but has since discharged her from PT. We LOVE Gino!

Keep up the prayers for Becca, they are working. God is doing amazing things in her life right now. (having to end this blog update – some little girl has fallen asleep in such a way that typing using both hands is nearly impossible)

 

(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.