(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
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.