just a rant

[KellyD]

Hi Joan! Hope all goes well with the lowering of the meds, we are doing the same at the moment so I will keep my already crossed fingers crossed a bit tighter for you as well! I would much rather be boring than have to ride this roller coaster!

[joan]

Well, we were myoclonic free since jan 23rd.. Oh My God what a lovely month its been. I forget what life was like, prior E. Naturally my daughters TOM comes and she has a few myoclonics. I know IF I tell the DR hes going to up the Keppra for break throughs. We cant handle 1000 keppra. We are going to stay at 750, for now and track what happens. We are doing everything in our powers to figure this out, but alas with little success. It is so frustrating.

Oh the up side, we had 14 inches of snow on SUnday-monday. For us thats a treat as its rare we get that much snow. My sons Dr appt to remove the cast was naturally monday so we didnt make it. But fear not!! my brainiac son just took the cast off himself. This freakin kid better get his PhD or someday, I swear, I am going to kick his butt!!!

joan*

[matchu]

I don't get it. The arguing part. It makes me so angry. I don't get it. Alex, with his myoclonics, and being in a behavior class. The teachers, and kids constantly arguing with each other, it causes Alex to have more seizures.The roller coaster. I will pray hard for you. You are a good person. Teresa

do others go into a simple/partial state or an aura when there is an argument or people just raising there voices, Going out in Public is somthing I try to avoid. Just too many noises and I want just die.

[stilldancing_98]

Well Alex will be moved out of that class room , and I got him a new neurologist. I am going to discuss Keppra.It's still hard to breathe but I am doing it. So much happening at one time. We took a day off today. Just stayed home.Teresa

[matchu]

hang in there, you can join me on my ledge.

[joan]

scoots you over so I can share the ledge.

sooo where are we?? Good and bad. Been so busying driving kids around, calling, reading, researching oiy* I have no life.

Good news.. My son can reapply for his license. The state asked him to agree to an every 6 mos monitoring for 2 yrs and that he stays under Dr care. Easy enough : ) So hopefully a few weeks he will be back to being on his own a bit. Yeahhhh!! Hes at the 6 mos mark soooo... can go either way. I "think" he will do well as he really has matured a bit and it taking E, the meds, eating, sleeping all a bit more seriously. So I "think" he will go seizure free a long time now. We shall see. The longest hes gone is 15 mos.. sooo time will tell.

My poor daughter?? What a freaking mess... OIY She was myoclonic free a month, went back to school. First day she arrives as usual 7am and by 830 I'm picking her up as her myoclonics are starting up. Since then shes been waking at 8am and showing up for her 3rd period class. THATS working fine. No myoclonics that way. BUT I know when I call the Dr.. the chances of him raising her keppra? I'm sure good. Now we know at 1000 she a zombie and I'm not going back to that and at 750 it doesn't seem to be working as well as we like.... so seems limited choices.

soooo things are, as they are... I'm just praying to make it through this school year and get my x honor roll student back on some sort of normal life for her. Next year I can have her scheduled for the first 2 periods free and that will make for a great year for her, I hope*
Shes had to change and give up so much this year I just want to scream and maybe even punch something lol OIY I did tell her to look on the bright side and to think how many teens would love not to go to school before 9 its a stretch but.... I do what I can lol

I hope everyone well. Ive missed ya all*
joan*

[stilldancing_98]

Hi Joan.Man are you going thru it. Is she stressing?

[joan]

I have been overwhelmed lately and doing my best to get back on track.

My son, thank God, has been seizure free since Sept 08. Im hoping with him aging lol almost 20 now, that he may settle down and IF he continues to take good care of himself, I hope we can go alot longer. He is still on 375 lamictal. Hoping this whole puberty thing resolves itself a bit*

Jenna, my baby*** God bless her as she is more woman than many adults. I am so proud of her. She has gone on MAD with Dr Kossoff and, dare I say it? We see improvements. Naturally with her scare of menigitis last week, which turned into a week hospital stay in isloation, ughhhh.. turns out she had strep for the first time. No matter what it was.. it was a horrible, stressful week and she had very few myoclonics. Its kinda shocking but we are guardedly optimistic. We are watching her like a hawk this week to be sure we arent "hoping too much" and seeing less.

I hope everyone well and I have missed you all **
joan*

[joan]

Jena continues to do well and is having a much better year in school. We hope to wean her Keppra 10/23 to 400 mg a day. We've come a looong way with her : ) and it really has paid off. She still has a myoclonic here and there. Maybe 1 a month. Some months none. But after having 1,000s a month, we are sooo good*

My beloved son went 13 months seizure free. I had to get him out of the shower this last Monday after an ugly grand mal. Hes got a few nice lumps and bumps on his head and a few cuts to his forehead. But hes ok. This is the first grand mal hes had where hes recovered within a few hours. Kinda scared me. So we start the clock again with Phillip... IF jena continues to do well on MAD.. within the year I will get him on it too. Maybe between the meds and MAD he can do better.

2 years ago I removed the tubs in our home and replaced the kids bathroom with a fitted shower. I also replaced the glass door with that safety glass. It has paid for itself 10 fold and then some*

I hope everyone well
joan*

[Nakamova]

It's so nice to hear when things are going in the right direction, and that the MAD diet is helping. I hope your son bounces back from this latest seizure and that you do too. I have such admiration for the kids and their parents who persevere through all that E throws at them.

Peace,
Nakamova

[joan]

Jena still on 500 regular Keppra. With her starting to drive this month, The DRs figure not to rock the boat and leave things alone. We plan on reducing another 250 keppra with the next few months. SHe getting frustrated by her diet as its "party time" at school. Well now till about February an its hard to stick to this diet. SHe drags around a cooler of her own food and its getting old to her. She continues to comply but I know its very hard at this point.

Phillip, having a few hard weeks. I wish he would just "accept" things and work them into his normal life rather than ignore and fight to the death against it. Hes just having a hard time and Im sure being 20 1/2 doesnt help lol Hes not driving at the moment* WE continue to love him and "try" to keep him positive and pushing forward.

I hope everyone well.
joan*

[Meetz1064]

hard, watching our kids go through things like this. I'm going through some growing apins with my kids, too, although they don't have E. It's driving me BANANAS.

ANYONE WANT SOME MORE 20+ YEAR OLD KIDS???? I have a few for sale!!! *tearing hair out* J/K. I love them to pieces, they're just EXASPERATING sometimes.

Take care, Joan. All will be well. ((((HUGS))))

Meetz