May Check In
 

thought i'd bring some spring to the room.

Well if no one check's in then it doesn't start. So I'll start and hope
someone will add. THis room needs some life.

Derrick is having a very rough spring so the beautiful flowers are
much appreciated curious. Derrick's seizures seem to be back in
a vengance. We are headed into the VEEG at Riley on May 17th
& 18th to get out hopefully on the morning of the 19th. Derrick
needs a very much change in his showing in this VEEG but he
has never been luck enough to show a seizure or even a small
sign of one in one. But the activity is always there. We have
to signs but not the shows.

He is on three medicines, and they are all maxed at very high
dosages, he has the want and gumption to do anything in the
world. And he tries very hard to go to the ends to get there.

HE is very successful this year again in school. Thanks to NCLB he
wont get a high school diploma, but a certificate of achievement and
unless I become the first to fight this in the courts which I really don't
have the money or know how to do. It wont change, he should get
one just like the rest of the kids should, but someone decided that kids
don't count. So he wont, but he will go far, he is a wonderful young
man.

He has a wonderful Bullying video about positive reactions to bullies.

Donna

Kevin is not too good
 

Kevin's cognitive level is dropping fast... we are loosing him. I was really hoping it was the Lamictal.... outpatient notes from epi states it just may be the syndrome.

His short term memory is shot, can't remember if he took his meds less than 5 minutes ago..... sometimes completely forgets to take them when I told him to... goes into kitchen gets a cup puts water in it... takes a drink and leaves kitchen.... pills still on the counter waiting for him.

School nurse is trying to help us, Epi nurse is trying to help us... just switched from zarontin to celontin back to zarontin... jerks are back, impulsiveness is at an all time peak... walks into traffic without looking, walks backwards on front porch and falls down stair???

Where did my wonderful child Kevin go?

Epilepsy sucks!

I have finally been allowed to log in for the first time in over a year. I have sent email upon email to NT Communities, and never heard anything. Glad I am back!!

My dd is back on meds after 18 months off and a crummy, very busy EEG. We were treating her for migraines as we had been told she had outgrown her epilepsy, and it was sz all along.

Glad to be able to catch up with everyone!!

hi 12alex

You said you have had trouble logging in for over a year? I see you joined here in October 2006 and NeuroTalk has only been here since August 2006:confused: so perhaps you have us confused with another forum?

If not, could you tell me who the emails you sent were addressed to so I can try to check on this for you

thanks

Chemar, I sent you a PM.

12alex

How are you guys doing. How all is well.

Glad you finally got in.

Donna

All is good here.....Megan is finally back to her normal self after surgery the end of January. Today she was standing for about 45 seconds ALL BY HERSELF!!!! And even tried to take a step! Definite joyous day that is for sure! God is Great!!!! For the baby who was to die, then be in a vegetative state.........She is doing awesome........Josh has his prom this past weekend and he looked so awesome! I can't believe that my baby will be 18 this fall and be a senior next year......Jacob is ALL boy and literally lives outside, he has more scratches and bruises then a boxer I think.......He has a little buddy who lives a few houses down and they are joined at the hip. It is so exciting to watch him enjoy all the new fun......Here are a few pics of the kiddos.
http://i68.photobucket.com/albums/i1...67/megan07.jpg

http://i68.photobucket.com/albums/i1...7/DSC00020.jpg

http://i68.photobucket.com/albums/i1.../hannah001.jpg

:o

hehe..i'm finally posting.

may is a busy month. my son is graduating from high school. my daughter and her bf will be flying in from new jersey for a few days. we are so excited about them being here for the graduation. we haven't see bf since they move 1 1/2 yrs ago.

lil'monkey went through some bone aches and pains again. yeppers...she grew more. 5ft 9 inches and just turned 13. she has a busy month. soccer and all the end of the year choir performances and recitals. she got her bottom braces on too. allergies have a been a bear for her.

grandmonkey keeps me busy. he rides his bike without training wheels now. into all the sports stuff, so lots of bumps and bruises. he eats like a horse...but still skinny as ever. hmmm...maybe if he SAT down for 5 minutes. :rolleyes:

we still have our house up for sale. driving me bonkers. the market hasn't been very good. my stress level is through the roof. that i know is not good for my health. just not much i can do about it.

we need to start some conversation thread. OT...whatever...to help get this forum going. ya'll have been doing great. i know i haven't been around much. hopefully that will change after we move.

:grouphug:

I haven't posted here in a looong time-

The last couple of months we have been on a roller coaster- First we found out that Riley was losing vision that was in Feb-, then a few weeks ago we found out that her vision had deteriorated even more, her eye doctor said it was the Topamax, neuro and eye doc went back and fourth about the cause, neuro still doesn't feel like it is the topa, I don't want it to be the topa, but the risk isn't worth it so he is putting her back on Zonegran and has a plan in case the Zonegran isn't enough. Her VNS is still reducing the length of her seizures which is great. He bumped her cycle up last week. We are hoping that if the vision loss is from the Topamax that once it is cleared from her system her vision will return to what it was before.

2 weeks ago she had her first in a very long time ER trip b/c of seizures. Hopefully it will be the last for a while.

Last Friday we went to her neuro appointment and got the results of her last EEG, after years of not knowing what is going on we have a diagnosis for her, Lennox Gastaut Syndrome. I knew in my heart a long time ago but that didn't make it any easier A lot of the last year makes more sense to us now, it was a hard hit. I am still trying to believe it, it feels unreal after everything we have been through.

We are taking it day by day and being thankful for the good days....