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.

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All things considered – doing great

Wednesday, January 20, 2010 4:11 PM

 

Rebecca is having a good 2010 so far. We are seeing lots of little things showing how much she is learning. So much improvement with how she plays with her toys. She is engaging with everything so much more. Seizure activity is up and down. But we are titrating down the Keppra. This is in hopes of adding Banzel later. Banzel is a drug specifically for kids with Lennox Gastaut. We wanted to get her off at least one of her other seizure medications that were not working very well before adding a  new one. Keppra was never very effective, but it does seem like each time we have a drop in the dose, there is a dramatic increase in activity for a few days. But then it levels off, back to a baseline. The good news is that there has been 4 weeks between drops in doses. The VNS still continues to do fairly well. By and large she is having fewer seizures, and mainly the events she does have are only about 30 seconds. I’ve been really trying to track them, and keep a record of how long they are lasting. I was shocked when I started to time them lately and seeing how short they were. Of course she may not think so. We are still seeing a pesky Atonic seizure pop up now and then – these are the ones where she just falls down to the ground. She looses all motor control. BAM. A little puddle of Becca. yeah, we need to make her wear her helmet more because of these. But she is a con artist, she knows how to act like she wants to snuggle with us like she wants to sleep, so we will take it off, and then Poof she is ready to play again.

We also often put the helmet on when she has clusters of head drops. To the untrained eye, these seizures might look like someone who is nodding off to sleep/fighting sleep. You know – the classic head falling forward then jerking back up – then a short time later repeating the pattern. Except for her, this goes on and on for several minutes. She might have upwards of 50 plus drops in that time. Being a little kid, she is still top heavy, and un-coordinated so these sometimes make her fall down. Hence, the need for the helmet when she is having these as well.

 

Saturday, February 13, 2010 11:14 AM

 

Just wanted to let you know I added a few photos from us playing in the latest NC snowfall today. Rebecca had fun playing in the snow. We didn’t get to play in the last snowfall because she was sick with a really bad chest infection. Today though, we got more snow and she got to play in things. She really seemed to like things. for a child who used to HATE cold things, she wasn’t hesitant to touch the snow, taste the snow or be outside. Her boots made it a little hard to walk around, so she wasn’t very  eager to move but she didn’t do too bad (then again snow boots make it hard for “normal” folks to walk!) Seizure activity is still so-so but we are still going along with the Keppra wean. So the fact things aren’t getting worse is good.

Soon we start with the big transition to Kindergarten for Rebecca.

Another EEG is planned for March 3, and follow up Doctor appointment with Dr. Mikati on March 4th.

I’ll update when I know more from that appt.

HAPPY VALENTINES DAY

 

Sunday, March 21, 2010 4:28 PM

 

Rebecca is doing fairly well these days. So I don’t have much details from our recent EEG. Mainly because we nearly forgot to ask the doctor about the EEG! He looked it up while we stood in the hallway as we were on our way out the door. Still shows seizure activity, but something about the wave form patterns or amplitude or something (?) was within normal limits for her age. Overall the EEG

looked better. I think all David and I really took home was “Better”. So far it really appears the VNS is a blessing! Sure we don’t have total seizure control – but its only a tiny fraction of patients that achieve that. We are happy we are in the percentage that have reduced seizures, reduced length of seizures she is having. Her quality of life is going up. This means also we are weaning her off some of the medications we know haven’t done much for her. This may allow us room later to put something different on. But even getting her off so many medications will improve her quality of life. Those medications are really hard on a developing mind.

She is a VERY active child now. Who would have thought she has only been walking a year. She is now learning how to go up and down stairs. She can do it, but still needs some assistance. She is learning to walk

She can do it, but still needs some assistance. She is learning to walk across the parking lot, holding hands like a big girl – this is more of a cognitive skill than anything else. Our next big thing will be her transition meeting in May. This will be when we iron out all the details of her moving from Pre-K to kindergarten! As for her annual IEP, which was earlier this month, we did decide to move her to “Support Services” for PT, which means she access the school environment on her own power now, and no long needs Physical Therapy at school. She still gets OT and speech, and we still do PT and OT on a private basis. But moving to support services is a big step. The PT will still be available to her, should she need it, should anything come up – but there just won’t be a set “15 minutes a week” or anything like that. But if say, the teachers notice Rebecca’s gait is all wonky – they can have the PT come in and take a look at things.

 

 

A new diagnosis

Wednesday, October 31, 2007 7:50 PM

 

Wow – today’s appointment with Dr. Leigh took a long time. Not only did we not get back to see her until an hour and a half after our appointment time, but it took a long time once we got there.

Basically Dr. Leigh is concerned that Rebecca is now having what are known as Drop Seizures (Atonic Seizures for those who know the technical term). This means she is now having 2 seizure types. What this also means is instead of having Infantile Spasms, she is progressing into having Lennox-Gastaut Syndrome. This is more or less a progression of Infantile Spasms, marked by having multiple seizure types. We are going to wean her off of the Phenobarbital (at Mom’s insistence), and she will be started on a medication called Lamictal. Something we will need to do more research on, to consider after she is finished with her chemotherapy is called a VNS, or Vagal Nerve Stimulator.

http://www.vnstherapy.com/epilepsy/patient/About_Basics.asp

This of course is something David and I need to do a lot more research on, but I know it is something that has helped a lot of people with drug resistant epilepsy, which is what Rebecca has. Infantile Spasms, and Lennox-Gastaut Syndrome (LGS) are both Drug Resistant Epilepsies. We took her to a few houses for trick or treating, but after such a long day she was really just ready to get in the bed. It doesn’t matter too much, we had so few kids come to our house that we have ample candy left over. Plus she got a few treats at the Children’s Health Center. There was even one nice Mother, Grandmother and cute little girl that had brought bags of goodies and let Rebecca pick out something. We got some Play-dough! That should be some fun sensory and Tactile stuff to play with – but we have to learn not to eat it. Rebecca also ate her very first lollypop! hopefully I will post the pictures tomorrow! At least She wore her costume to the clinic today!

 

Sunday, November 25, 2007 12:26 PM

 

Thanksgiving was good. Rebecca ate sooo much food. Thursday we went to Raleigh and spent the day with Grandma and PopPop and she ate some Turkey and all the trimmings, including a Becca sized slice of Pumpkin Pie. I can’t believe she ate so much. Everyone loved seeing her. Then Friday it was off to Thomasville and Kernersville to see Granny for Lunch, and then Grandpa and Kathy for dessert later. Again, for the 2nd day in a row Rebecca ate a lot of food. Friday she had some more Turkey, and fixings. For her deserts, she ate some Banana pudding. YUMMY. The Grandparents couldn’t get enough of her. Although everyone certainly got a taste of daily life with her. The little girl who doesn’t walk – but never sits still! All Daddy and Mommy kept hearing was “Wow, she sure is an active little girl”. Haha! Please pray that she can put all that energy to good use and start walking

on her own. On a good note – we should be getting her the helmet soon. We are expecting it to get ordered on Monday. I am very Thankful that this has finally come through for her.

One year ago we started the Chemo. Thank you everyone for all your prayers for the past year (and before, for the epilepsy). Your prayer has meant so much to me.

 

Monday, December 10, 2007 4:11 PM

 

 

We have our first helmet for Rebecca! today is day one with the helmet. so far so good. She even just took a little tumble backwards. Not a seizure, but just an uncoordinated fall backwards. But she conked her head hard – except for the fact she had her helmet on. So it didn’t even phase her. How wonderful. This past weekend poor baby was battling a touch of the stomach bug. Early Thursday am, I was awakened to her crying. I went in to see what was wrong, and discovered she had vomited. YUCK. Not the kind of surprise you want to find at 4am. I woke David up and we cleaned her up, and changed the sheets. She was fine all day, we went slow on the food and drinks. then again Saturday morning, she got sick. Several times Saturday. So we tried Saturday to get something into her, to keep her hydrated. Sunday we just spent the day giving her an ounce or two every half hour. Poor baby.

Tomorrow is another Chemo.

Wednesday we have a Speech Evaluation with the folks from Early Intervention. This will qualify her for Speech Therapy services.

 

Wednesday, December 12, 2007 10:10 AM

 

I added a picture of Becca in her helmet.

Basically we needed the helmet to protect her as she is playing and moving around in case she has one of her seizures. Even though the seizures she has are not what most people think of when they hear the word seizure, she still hits her head pretty hard as she falls. The helmet is a little big, which gives us room to grow into it, but we also still need to tweak it a bit so it fits her properly for the here and now.

 

 

Friday, December 28, 2007 1:47 PM

 

Rebecca had a very Merry Christmas.

It was the first holiday she has had that she was not overly sleepy or did not have so many seizures that cast a shadow on the day. She had so much fun exploring all of her toys as she opened them. Of course the wrapping paper is still as much of a toy as the item inside the box. It has not been until today that we are seeing the After Christmas crash, where she is more tired and having a few more seizures. But both David and I knew it was coming. We just feel blessed she could enjoy Christmas eve and Christmas day. After the first of the year Rebecca has another MRI, just a routine MRI, but it is something to pray we get good results for. We also have several clinic appointments in January. The Eye Dr, the neurologist, and of course her regular Chemotherapy appointments. Please pray these all go well.