Please could you send some prayers and pixie dust my DD's way

[SueM in MN]

Thanks for all the good wishes, prayers and pixie dust.
Here's a bit of explanation and update.
DD is 20 and didn't have her first seizure until she was about 9, so she was a bit old at the time they started to try the Ketogenic diet (it's most effective from what I've read on younger kids). She's also kind of a picky eater and is rather thin, so we worried about the effects of any diet on her and up until recently, we could live with 1-2 seizures a month (but thanks for the suggestion).

She hasn't really had any changes recently, except for the seizures and she is full grown, since she hasn't grown for a few years (at 5 feet tall and 87 pounds). So, we're not sure just what is going on excpet that the doctor thinks they look like breakthru seizures (which is why the hope that increasing the meds would control them).
I was going to wait a few days until she's on winter break to start increasing her medication, but after seizures last night, I did increase the evening dose. I expected her to be tired today, but she's actually pretty energetic and has had no seizure activity today (yeah!).

 

[RaySharpton]

Thanks for all the good wishes, prayers and pixie dust.

I expected her to be tired today, but she's actually pretty energetic and has had no seizure activity today (yeah!).

Yeahhhhhhh!!!! Continued prayers.

Sincerely, Ray

 

[rascalmom]

Prayers and pixie dust.

I really hope your daughter gets better soon.

 

[joksten2000]

Keeping you in our prayers

 

[BCV23]

Oh Sue, I'm sorry to hear of this.

Tons of pixie dust headed your daughter's way. She will be in my prayers. I'm glad that today was better.

 

[dj2]

but she's actually pretty energetic and has had no seizure activity today (yeah!).

That's good news! Your whole family is in my prayers. Keep us posted.
-dj

 

[Nanajo1]

Hope things are settling down. PD and

 

[SueM in MN]

Here's an update.

So much for thinking the increased medication might sedate her - she did NOT want to go to bed last night, so I was finally taking her (not exactly screaming, but some kicking) to bed after 11 pm.
We didn't have school today, so I didn't get her up early, but that's kind of average for non-school days. (Her idea of a good time to get up on a Saturday is about 2 pm. I got her up today at 11am, which was not to herr liking, but she was OK with it.)
So far, she has not had a seizure since Tuesday (when she had 2 flurries of seizures).
So far, so good.

 

[mbb]

.....So far, so good.

Continued prayers for more so far, so good

To echo what many others have already said - you give so much to all of us..to keep you and yours in our thoughts and prayers is the least we can do

Thanks for keeping us updated

 

[eternaldisneyfan]

I hope things continue to improve!

Christamae

 

[lizziepooh]

I hope things improve for your daughter soon. Prayers for her and your family in getting thru these rough times.

 

[D L and K's Mom]

I know what you are going through. After 7 years of NO seizures DS is now having horrible grand mal (last one was 28 minutes!!) seizures. We are going to the hospital from Jan3-10 for a video EEG study. I am so tired of them. I will keep you and your DD in my thoughts and prayers....{{{{{{{HUGS}}}}}}

 

[safetymom]

Prayers and pixie dust on the way. I hope you get great results.

 

[lovethattink]

Will be praying for you and your daughter. My SIL had a similar experience, where her meds suddenly weren't working. Thankfully she is back under control. We see the stress they are under and I really feel for you. Hope the doc can get her on the right med or combo of meds to get her seizures under control.

 

[joanchris]

I will be thinking of you, I do hope things have continued to improve since you last posted. We had a similar experience about 2 1/2 years ago, with my daughter's seizures coming back strong, after years of control with Lamictal. Thankfully, increasing the dosage (quite a bit, but we were very low to start) worked very well and continues to work, usually with only minor, occasional seizures breaking through.
Good luck!

 

[Karalynn]

I expected her to be tired today, but she's actually pretty energetic and has had no seizure activity today (yeah!).

Yay! I hope things are continuing to go well! for you & for your daughter!!!

 

[Lachesis00]

Poor little thing. I hope she feels better soon!

 

[SueM in MN]

thank you all.
Things continue to go well, although DD is tired with her "one dose increase" of medication. We increased her nightime dose of Lamictal by 25 mg a little over a week ago.
We were supposed to do another increase of her medication (the noon dose) on Tuesday, but I held off because she seems sort of tired during the day (but wants to be up until 11:30 at night). I'm going to wait and see how she is once we are back to our normal schedule with school next week. If she is really tired, I'll check in with the neurologist again and see what he thinks about just holding at the current doses.

She did well over Christmas though. We had a 5 hour drive to visit relatives in Wisconsin (and a 5 hour drive back), many late hours and medication schedules not quite on schedule. Thru all that, she had no seizures that we noticed.
So, all is well so far and hopefully will continue.

 

[welovedis]

Sue-glad to hear that she is doing better, continued prayers coming your way for her & your family!

 

[MinnyGranny62]

Good to hear that DD is doing better. may she continue to
be without seizures. Prayers sent your way. Shirley