I don't like Sundays

[MegNJaxMom]

I hate to rejoin here with a downer post, but Miss Megs had a dousy of a seizure yesterday. This is the first one that she has had while sleeping, and I don't know when it started, but when I found her, she was covered in slobber. Here is a copy/paste from our CaringBridge page. I don't know what to do anymore. I am feeling really defeated. She is ok today, really sleepy yet but has great moments and is crawling and talking, but she just has that post-ictal glaze in her eyes sometimes.

Monday, October 2, 2006 7:39 AM CDT

Well so much for a Sane Sunday. Instead we got another PSYCHO SUNDAY. Ok, for the most part it was great. But when I realized that Megs had been upstairs taking a very long nap even for her, I went to check on her. I heard her "seizure grunt" half way up the steps. She was covered in drool, and her whole body was in full seizure. Eyes rolled back, everything twitching, scary sight for a mommy. I happened to be talking to Chris on the phone when I went to check on her, so he hears me say "OH CRAP" and so he talked to me while I was freaking out and going on the world's biggest guilt trip. I should have checked on her sooner. I should have gotten a new video monitor sooner. I should have I should have I should have. I realize in my head that I couldn't have prevented the seizure. I hurt in my heart because to watch her have a seizure that bad I feel that mommy guilt that has no basis. So I gave her her diastat, called the hospital to let them know we were coming, called mom and dad to let them know I wanted them to meet me at the hospital. Wouldn't you know that about a mile before we got to the hospital, she stopped seizing. But, she had her seizure temp by then, and she sounded junky when she was breathing, so we went anyway. They checked her blood levels (CBC, Chem 8, Trileptal and Topamax levels) and her white count and sodium levels came back elevated. So Dr. Coady called up to Children's to talk to the on-call neurologists. We wanted to make sure we covered all bases before we came home. At this time she was still totally out of it, would open her eyes every once in a while for a brief moment, but was sleeping very soundly. We got her blood drawn without having to hold her down. The lab guy has seen her in ER before and remembers her and was going to go get someone to help hold her and I assured him that she wouldn't fight. I was right. Her right arm twitched once when he stuck her, otherwise not even her eyes opened. So they had me on "pick on Megan" duty to see if she would wake. I messed with her mouth and she tried to bite me. She then stuck her tongue out at me and I knew we'd be ok. So, the on-call neuro upped her Topamax dose for the evening and we have to go back today to get labs drawn again to make sure that the white count and sodium are back up. Those were probably just "post-ictal" (meaning after a seizure) numbers and that can be normal. Right now she is standing (holding onto me) talking and acting almost normal. She and Jack slept in bed with me last night while my wonderful husband slept in the living room.

Just an example of what stress can do to my blood sugar: I checked it cause I felt like it was high. I was very right (this was at the ER after we were settled and waiting for her to wake) because it was 500. Two hours before that it was 46 and I had to eat to get it up to 131. So, we are going to take it easy today.

Thanks for checking on us.

Love and hugs,
Heather

[CathyE]

So sorry to hear this news. Hopefully both of you are on the mend. And hopefully she'll be seizure free for a long time. How long had it been since she had one?

And I gather you have diabetes or hypo/hyper-glycemia. (I don't know the difference of the glycemias.

Cathy

[MegNJaxMom]

Hi Cathy. It had only been about 3 weeks since her last seizure.

Yes, I am diabetic and have been since I was eight. It stinks, but I have an insulin pump now, so that helps alot.

[kathleenandjoe]

CRAP.

How absolutely terrified you must have been. I am so sorry to hear of this.

Becca's blood levels are all over the place after a big, long seizure - so that is probably what that is about . .. though the white count is odd - she must have some major bug maybe???

Still - a generalized full body seizure. Jesus.

I hope you both are doing beter and recovering. Do kep us posted on what comes of all this.

And always on a weekend or holiday. . . . I know.

xo
Kathleen

[Braindrain]

I hope Meg is feeling much better today!:)

((((((((Meg)))))))) ((((((((Heather))))))))

[Brandon's Mom]

{{{Heather}}}

I feel your pain woman. Unfortunately, as moms, we can't stop the guilt trips or the seizures and it is always heartbreaking to see our kids have seizures.

[MegNJaxMom]

Hey guys! We had a better day today. I still haven't gotten any answers about anything from anyone, so what else is new? I have a copy/paste below... It is late and I have to be to work in about 7 hours. Thanks for being here!
Heather


Hello all. We are doing better. Megan tried to take some steps tonight, so that made my mommy heart feel pretty good. She was full of kisses too! Don't get me wrong, there was that nasty ol' spittin' that she does too, but she is still responsible for that, so to time out she goes. My head and heart are still stuck in neutral. I feel guilty yet, I feel frustrated, and I feel sad. It is absolutely indescribable what it feels like to witness that kind of "torture" on your child. It is the most helpless, gut-wrenching feeling I have ever experienced. I pray to God no one else ever has to see that, and to those of you that have, GOD BLESS YOU! I know this sounds crazy, but I would rather hand my baby over for surgery than see her have a long seizure like that. Surgery is a purposeful, mostly controlled situation that has a reason, a plan, and a team. A seizure is a nasty beast that takes over and has no plan, no reason, no team. And maybe the seizure isn't what I hate most. I think it is the effect it has on Megan that hurts the most. She knows what she is capable of and when she can't do that, it (sorry!) PISSES HER OFF!

The highs and lows of today were this: When I dropped Megs and Jack off at Diane's Megs just sobbed. Not scream "I am not getting my way" kind of thing, more of "mommy you can't leave me I need you" kind of sob. I just about cried on my way to work. Tears were there, the lump was in my throat, and I went into prayer mode. I woke with a song in my head that includes this in the lyrics "Jesus, light of the world, shine on us, shine on us" and I had that song in my head all day. He truly did shine on us because in between work and the class I had tonight, I stopped at mom and dad's to see Megs. She sat on my lap and kissed me and even walked about 5 steps to me and smiled and smiled. When she was done (which was just before I had to go again) she got off my lap and said "Bye mom. See." Translated to "bye mom, see ya." No tears, no sobbing, only smiles. My heart needed that so badly that I smiled the rest of the night.

Some prayers for my aunt RuthAnn tomorrow would be greatly appreciated. (Wednesday that is since it is late!) She is having surgery for the cancer by or on her eye (sorry, can't remember if it is on or by her eye). I know she won't be reading this, but Aunt RuthAnn I love you and pray for your safe and effective surgery!

Thanks for checking on us!

Love and hugs,
Heather

[MegNJaxMom]

CRAP.

How absolutely terrified you must have been. I am so sorry to hear of this.

Becca's blood levels are all over the place after a big, long seizure - so that is probably what that is about . .. though the white count is odd - she must have some major bug maybe???

Still - a generalized full body seizure. Jesus.

I hope you both are doing beter and recovering. Do kep us posted on what comes of all this.

And always on a weekend or holiday. . . . I know.

xo
Kathleen

Hey Kathleen. She has no sign of illness at all. No cough, no ear probs, no red throat, a little stuffy nose, but the corn field on the other side of our driveway just got harvested, so we are all stuffy. The doctor could not find a single reason for the WBC to be high. The next day it was normal again and the neuro on-call said sometimes a seizure raises that too.

How long does Becca recover from her seizures? I mean the bad ones. Megs is totally wobbly. I told my mom she looks like she has Parkinson's. Very shaky, even when she is standing still holding onto a chair or me. Now that Becca is more vocal and able to communicate better, does she get really mad after a seizure because things just aren't working like she knows they should? Megan was screaming "I walk I walk" this morning but she has the stability of an earthquake.

[laurensmom]

Sending hugs and healing prayers for your sweetie pie....

[Brandon's Mom]

{{{Heather}}}

I'm glad Megs is rebounding from that nasty seizure.

I'm not Kathleen but I thought I'd share our experience with you---After Brandon's bad seizures his behavior and balance and such would be "off" for 2-3 days. He's never known when he's had seizures but he is aware of when his ability to think/concentrate is off, or his body isn't moving the way he's used to and he would get very frustrated. The same goes for when he's had his stroke-like episodes and his muscles are tight, he gets really ticked off and as a youngster he would even bite his left wrist (hard enough to draw blood and leave teeth imprints) because his arm wouldn't be doing what he wanted it to do. I would always be sure and tell his teachers when he'd had a bad seizure so that they'd know that he'd be a pickle for a couple of days and also need to be watched more carefully since he was unstable physically.

Prayers for your Aunt RuthAnn. If she is fortunate, they will sedate her before her surgery. A couple of years ago I had a tumor removed from my eyelid, they were just going to biopsy it, but went ahead and took the whole area out and it turned out to be non-cancerous for me luckily. I can tell you that lying there watching a needle come into your eye area and feeling it go into such a tender area is NOT pleasant, it was absolutely horrifying for me. :eek:

[LIZARD]

She knows what she is capable of and when she can't do that, it (sorry!) PISSES HER OFF!

((((((((((((Heddababy))))))))))))) and (((((((((((MissMegs)))))))))))))).

Can I EVER relate to this!! :( :rolleyes: I'm in a place in my life now where I can at least say I "know the drill" and that I'll be back to myself after about 24-36 hours, but yeah...it's frustrating as h3ll. :( I think the clusters of SPs are worse, actually, than a GM, 'cause at least with a GM, I'm gettin' it all over with at once. With the SPs, the $hittiness just goes on like an Energizer bunny. It's exhausting and just a plain ol' p.i.t.a., if'n ya know what I mean...

I'm glad to hear she's finally on her way to recovery. Give her a big kiss from Auntie LIZARD and all my sympathies, too.


WL, who loves ya :)

[kathleenandjoe]

Oh my - - - - I just relate so much to what you are witnessing too - - - a very frustrated, still recovering/sick little girl.

It takes Becca a full week to get back to "normal" barring any illness along with the situation - after a big one. Becca has never had an all over shaker - grand mal I think it's called though - just LONG partials where her right side pulsates and she keeps going despite being loaded up with everything possible. . . sometimes takes a break then goes back to seizing. . .ultimately vomits a few times and sleeps.

She then wakes with the todd's paralysis on hemi side. . .bad for 48 hours. . .then still apparent for up to 4-5 days . .. wobbly though she tries to walk and do everything she usually could. She falls a lot and is tired and pissed (some of this I think from all the meds pumped in to stop her siezures though).

THANK GOD Becca has not seen a long one in ONE YEAR TODAY. Just WAY too many short complex partials - - - but we'll take that over the long ones as she is usually fine after those unless there are lots in one day (or 23 like last weekend - ugh).

Ask your neuro about lamictal. That's where we're headed up on right now. Since Becca and Megs sound so much alike - though this generalized one for her might have put the kaput on that.

Becca's EEG 2 weeks ago - and she had one longer complex partial (though he saw more than one episode and I only saw one which scares me) he said lamictal does well on what he saw usually.

I hope today brings better times for you all. Hugs to that fighting girl.

xo
Kathleen (typing with my 18 mo hanging on arm - sorry)

[Austinsmom]

I hate seizures bad ones piss me off so bad, I can relate to your blood sugar going off the wall, my whole body goes into pit-bull attack and protect mode. it is instint. don't feel guilty, you can not stop or start seizures...{{hugs}}
Hope all is going well for sweet little Megan
LOve to you both
Deborah

[MegNJaxMom]

I think this seizure was just a generalized complex partial. It looked like they usually do if they go too long. Not like my brother's tonic clonics that he would have... nothing can compare to that! And, I have no idea if I said that right... It was still very scary for me!

I am going to ask them about lamictal. I hate this....

I noticed that Megan's right side (the side that usually seizes, the side that starts it all anyway) was super weak after this last one. She has the Todd's paralasis too. It is creepy and so sad to see her try to sit up and just tip over to the right because she can't catch herself. Last time she had a seizure she tried to crawl and when her weight should have been held by the right, she did a face plant. She is still kinda draggin it around. A couple hours after the seizure she woke up and would help hold her cup with leftie, but wouldn't even attempt to use righty. What does it take to have a cp diagnosis? The weakness is starting to bother me, and I don't know how bad it has to be to have someone say "Hey, I think there is something wrong here." Of course when I mentioned it to her PT last time, she was using everything fine. As soon as Sue left, she was back to favoring righty.

The only thing Megs had for this seizure was the dose of Diastat I gave her here at home. She stopped seizing just before we got to the hospital. So they didn't give her anything else. She acted doped though. Completely zonked.... which who could blame her.

Last question (this time anyway!): Do any of you think this warrants a new EEG? A longer EEG maybe? Or would it just be moot point now?


Oh my - - - - I just relate so much to what you are witnessing too - - - a very frustrated, still recovering/sick little girl.

It takes Becca a full week to get back to "normal" barring any illness along with the situation - after a big one. Becca has never had an all over shaker - grand mal I think it's called though - just LONG partials where her right side pulsates and she keeps going despite being loaded up with everything possible. . . sometimes takes a break then goes back to seizing. . .ultimately vomits a few times and sleeps.

She then wakes with the todd's paralysis on hemi side. . .bad for 48 hours. . .then still apparent for up to 4-5 days . .. wobbly though she tries to walk and do everything she usually could. She falls a lot and is tired and pissed (some of this I think from all the meds pumped in to stop her siezures though).

THANK GOD Becca has not seen a long one in ONE YEAR TODAY. Just WAY too many short complex partials - - - but we'll take that over the long ones as she is usually fine after those unless there are lots in one day (or 23 like last weekend - ugh).

Ask your neuro about lamictal. That's where we're headed up on right now. Since Becca and Megs sound so much alike - though this generalized one for her might have put the kaput on that.

Becca's EEG 2 weeks ago - and she had one longer complex partial (though he saw more than one episode and I only saw one which scares me) he said lamictal does well on what he saw usually.

I hope today brings better times for you all. Hugs to that fighting girl.

xo
Kathleen (typing with my 18 mo hanging on arm - sorry)

[kathleenandjoe]

When was her last EEG and did she have a seizure during it??? Did you post it to SCI BILL?? I do not remember.

Well . . . I am a bit hesitant to reccommend it after our sleep deprived experience just 2 weeks ago - - - -but we got one on record at least. Now he can see. And we are in a new place with new sets (21 peds neuros here!) of eyes to look at it.

It might be worth a try. Get more than one opinion even if you love your neuro.


Hugs,
Kathleen

[MegNJaxMom]

Her last EEG was about a year ago or so. She did not have a seizure during it and we have never had one done without meds. I got her to sleep (only by the grace of GOD!) and then they came in and woke us up.

The problem I have getting a second opinion is this: there aren't many ped. neuros around here. The main problem I have with this office is that his nurse has changed. This one doesn't take me seriously and Jan never ever let me go without me feeling comfortable with the info she just gave me and would never make me track her down. This one seems to think that she is the dr. and avoided me for 2 days before I got an "answer" that still has me agrivated. So I will be talking to Dr. P about his buffer zone and about a new EEG.

[Suecr]

:( So sorry to hear of this. Sending good thought and prayer. After what happened I would definatley request another eeg, maybe a couple of days with video or an ambulatory one. Also see if your Hosp can do cortical mapping.

[MegNJaxMom]

What is cortical mapping? What does it do?

I am just exhausted because of Megs and because mid-term is next week which means I have a ton of homework. I wonder what I am doing to myself, but when I do my homework for my Intro to SPED, I realize that I am doing this because I have been called... But man... the pressure sometimes!

I am going to make sure that I talk to Dr. P. next week and I will request an EEG for sure. I am going to go google cortical mapping...

Thanks everyone!

[Suecr]

Here is one link to cortical mapping, there are more links to it.

http://www.childrenshospital.org/az/Site1509/printerfriendlypageS1509P0.html