It is so good to see and hear from some conforting faces again here. Becca has been having seizures since our move to VA. The new neuro (Gaillard at Children's National Medical Center) is starting Lamictal tomorrow. She has maxed out on Keppra already and we are no longer throlled with the behavioral side effects anyway. We have an MRI and EEG - along with many other appts with new docs here since our move - this month.

Any one with Lamictal experience that can share would be much appreciated. It takes two months to get up on the dose, so we'll be on keppra and Lamictal for 2 months before weaning any keppra and eventually getting rid of it. I understand I am suppose to watch out for a rash.

On a good note, she started Kindergarten last week. Not sure which she likes more - the bus or school! She also started soccer. Here is a copy of the email I sent after the first day last week. It has gotten easier. Now she just has to miss so much school due to all these dang appointments. Ugh!

Email Pasting:

Well it’s official: Becca is in Kindergarten! We have lost much sleep this week preparing for this day, and now can breathe a little easier. One day down. She went, had fun, and found her way home. She is ready to do it all again tomorrow. Here is a rundown of her first day and some events leading up to it:

Last Friday: I met with the staff armed with brightly colored handouts, and a presentation on her seizures, hydrocephalus, and hemiplegia. I did everything short of quiz them. Some of their questions were quite humorous, but I was glad they asked rather than assume (ie helmet for PE class). I left feeling much more at ease. She has been seizing more lately, and they are not obvious if you do not know what to look for.

Sunday: Becca had 5 seizures, some longer than others. We had to drug her with some ativan doses to cool her brain down.

Monday: Spent recovering from the ativan we had to give her yesterday.

TODAY – HER FIRST DAY:

0555 Becca is up and bouncing with excitement for her first day of school

0630 She has eaten a huge breakfast, gotten dressed, hair done, teeth brushed, and she is asking me when the bus will be here. Meanwhile I am trying to hide my stress and emotion as I pack her lunch and snack, explaining that it will be nearly TWO HOURS until the bus is here.

0810 we journey out to the bus stop in front of our house and I strap AJ into a stroller – he screams – and I await with camera in hand.

**** I will add here that I tried very hard to get Becca to agree to walking to the school with me until the weather gets bad. It is about 2.5 blocks uphill from our house. She refused. Her friends across the street were riding the bus and there was no way she was not joining them.

0820 Becca gets up the HUGE bus stairs with her backpack on. She could barely contain herself in line at the stop. If I had not asked for a hug and kiss, she would have gone on without so much as looking at me until the wave and smile from the bus window I got. The aide that was suppose to be on the bus knowing about her seizures is not there. Just the driver whom I’d never met. I watch them drive off and start to cry while some of the other moms at the stop are actually high fiveing one another.

Last year, she did not want to leave me and she actually believed that I stood outside the school waiting for the entire three hours she was in school.

0821 I run to school with AJ in stroller to try and beat the bus, bawling – but get myself together before entering the school. I watched her get off the bus and settle into her room from afar. She is doing GREAT already.

0835 I learn that a substitute teacher with no medical experience is manning the nurse’s office until they can find a nurse (RN). I reluctantly hand over the diastat to the sub - that needs to be administered to Becca for seizures lasting longer than 5 minutes, say a prayer that they never have to use it, thank God that I am so close to the school, and leave. AJ is still not a happy camper in the jogging stroller. We take a walk with a friend on the way home.

I sat at home wondering how she will do at lunch, if she will have a seizure, if she will have a keppra moment and just melt down or whack someone, if the other kids will be nice to her and help her, how will she get her backpack open with one hand – or many other fine motor tasks for that matter, if she’ll miss me . . . And what in the world I will do without her here.

I filled Joe in on the morning’s events and pictures via email. He had a class today. I went to the commissary with only one kid today. It was nice. I played cars with AJ without Becca vying for my attention. He loved it. I missed Becca. AJ missed Becca. He actually called for her at times. Very sweet. I made a Welcome Home Kindergartener certificate for her and put it on the front door.

1200 School calls. Becca had a meltdown and they were having a hard time with her. We decided to have me stay away so that she would not expect me to come at the event of a fit, or small seizure for that matter. This is very hard to do for me. I think that she was just so excited and not sure what to expect - that she just had to let down. She is also used to a rest time in the afternoons. Luckily, that is what was next at school, and she calmed down for them. I cried a little more, and then called to check on her. She did wonderful the rest of the day, so they said when her teacher called this evening.

1451 The bus drops her off and she was just proud as can be coming off that bus! She filled me in on the day and never mentioned her meltdown, but told me a little when I asked. She asked if she could go back tomorrow. I cried a little more.

She chilled out the rest of the afternoon, had a minor meltdown tonight when it was time to take her pills. . . But then admitted she was tired and wanted to go to bed. Now she is down for the count.

Day one is done. We are exhausted, but so proud of our little Kindergartener. It has to be easier from here on out, right!? I think I might sleep tonight. I hope. Oh the Places She Will Go. . .

I will attach a picture, and here is a link to more pics from this morning:

http://share.shutterfly.com/action/w...8AcsmLRq3ZM2wC


Peace and Love,
Kathleen, Joe, Becca, and AJ Riley

Hi!

Cute pictures! Good to hear she enjoyed all day school! Caitlin starts on friday....I am so nervous about the "all day" vs 1/2 days!! Caitlin had a fever yesterday and today so I am hoping that goes away too, I would hate for her to miss the first day! It is just going to be so weird to not have her at home during the week!! Last year she went to 1/2 day pre-k, but the time seemed to go so fast...only gone for a few hours and home for lunch. This 7-4 schedule will be an adjustment for me!! When I talked to the principal yesterday he said parents are welcome to come & eat with their kids whenever...I'll have to try that some time!

Lisa O.

Just a quick reply, because I've spent all morning on this computer and have done "nothing." I'm so glad she had a good day, overall. She's definitely having a long day at school. Tom had a half day of kindergarten last year, and he had a long, full day of first grade yesterday. I could tell a difference. I was used to him coming out and chatting about everything that went on, and yesterday he was making short, snappy statements (No. Don't get sisters. No. Stay home. etc.) It was a few hours later before he seemed his happy, chatty self again.

About the backpack: when Tom got his first one, he was in preschool and it almost pulled him backwards. I've been buying the rolling kind ever since. A lot of the kids use them here.

Hope today is a good day, too.

I loved the story. And it is so neat when they have a great first day.

Donna

Hello! Hard to believe how fast these little ones are growing!

We are on our second experience with lamictal, so I consider myself something of an unwilling expert.

Seriously, lamictal has been the best med for Langan. The most obvious side effect for us- insomnia. All night parties. Langan has gotten past those, for the most part, but she now needs melatonin every night to get to sleep.

We also saw some balance problems the first go round (although balance has never been Langan's strong point, she was noticeably wobblier with it). We haven't seen that as much this time.

For us, the lower doses have been more effective. We are actually now in the process of lowering the dose b/c each of the last two increases has seen a marked increase in seizure activity. Our neuro thinks it's the lamictal, even though Langan's dose is not very high. So in that sense, the excruciatingly slow increases are good- you can see if there are negative changes from them.

We were told by a prior neuro that lamictal is the only AED that stimulates the nervous system instead of depressing it. Not sure if that's still true or not but it certainly does stimulate in the night time!! It is also supposed to have less impact on learning, which I think is true as it compared to the long list of other meds we tried.

Hope this helps! And I hope lamictal is the right med for you guys!

(((hugs)))

Wendy

Oh Kathleen, Becca has gotten so big since BT has been down! And she is starting kindergarden I bet you can't believe it! I loved reading all about it! I have an aunt and uncle who live in Virginia. They live in a little town called Strasburg, they also live near a well known tourist attraction called "Sky Line Drive". Have you ever heard of Strasburg or Sky Line Drive??

Anyway, its fantastic you found your way back here!

Robin

Thanks everyone! Gosh I missed this place.

And Robin - I just read of your exciting move to come this fall! Fabulous!

I have not heard of either. . . but we are quite new to the area. Quantico is the Marine base 30 miles south of DC.

What gorgeous pics! i am so glad school is so wonderful to Becca. Thanks for sharing, it made me smile.