roll call
 

It has been so long
I am hoping all is going well with each of you and your dear sweet children

Austin is now moved into his apartment right next to college he starts college this Monday
he moved there 2 weeks ago that same day as moving he had a Neuro appt. following a 3 day ambulatory EEG,(4 days wired for sound) we as always were hoping they would find he had no seizures and he could go off seizure meds, but instead they found Austin to have both Seizures and a movement disorder so Austin started college with 2 strong meds, his seizure meds and Sinemet, so instead of just college worries, we are all worried about the side effects of this new dopamine med. and the real worry is what this is all progressing to. but as Austin always does we talked and as he said he is no different then last month so, he will just keep going on, this was a blow we were not expecting.
Austin's Apt is nice real big with 2 pools a weight room Jaz. he has washer and dryer in the apt. and 3 roommates, he got a new computer, all his books, the college is offering him some services and he has taken the public bus all over and feels comfortable going to Balboa island, Newport and Huntington beach on his own, he has a roommate who also has no car who has gone with him too. in his neighborhood in walking distance is everything, stores, drug stores, his bank, P.Office and the college, his roommates know about him and were more concerned on if they might see a seizure, then what to do, they are young and very able to call 911, my family, father and Aunt live 20 to 35 mins away we have plans and notes in place. They check on Austin and take him to lunch….so off to college Austin goes
I could not be more proud, worried and miss the hell out of him
how are all of you? I have thought of you all so much......
next...

Hello All
 

It's me, Heather (formerly hedda). It has been so long, I couldn't remember my password, so I did this instead. Been wanting a different user name anyway.

Megan is pluggin' away. She is finally taking steps that get her somewhere besides on her butt! She has had a couple seizures since the crash, and we actually avoided one... because she is showing some pretty hard to ignore signs before hand!

Chris and I both have new jobs... he is a security guard at a college nearby. I am now a 3 year old preschool teacher. We both LOVE our jobs, but we don't get to see much of each other because he works 4pm-midnight, and I work 8-4pm. That's what the weekends are for. I am also taking college classes on line.... What was I thinking?!?!?! SO, sleep is a luxury for me right now, but I love it. Since Chris works at the college I am enrolled in, I get a discount on tuition, so how could I pass that up?

Jack wanted so badly to go to school this fall. He is 3 1/2. :eek: I didn't want to enroll him in my preschool because I would probably be his teacher, and I didn't really think that would work. So maybe next year.

Who's next? And, it is SO GREAT to be "back".

Hey Roomies!
I'm here... once I figured out that I needed to redo my registration. For those of you who may not have noticed, this in NOT John Lesters original BT forum but a new forum using the BT name. So that is why we had to register again.
Anyway...........................
We are still hanging in there. Hannah has been diagnosed with Dysautonomia (basically means her autonomic NS doesn't work properly) and her older sister Kate with Rheumatoid Arthritis. Never a dull moment I'm afraid. Hannahs cardio (yes we have one of those now too) is arranging for us to take Hannah to the Mayo Clinic for further evaluation. So we are waiting for a call back from them. Not much else to report.
I missed you guys and am glad to see old friends as well as new faces!
love and hugs,
lisa

I am here, having a few issues so I am headed to the NS office in a few minutes. Hoping everything is fine.

I finished school on the 16 of August and I am presently looking for a job.

LIfes never dull with me.

Suzie

Hellloooooo! :D Great to see everyone again! I went into hospital two days after it shut down. (This site, that is, not the hospital! lol). I've had a rough few weeks but feeling a bit better now; my VA shunt was overdraining and I had to wait 4.5 months for my revision operation and during that time my vents collapsed (but I hadn't realised; just felt awful). Had my full VA to VP shunt revision which went fine but problems with pressure after; first it went too high, then after several (painful) adjustments, too low. Now they're very gradually increasing the pressure by one notch at a time. I've been home for 2 weeks. Also had dreadful stomach spasms caused by trapped air bubble when they inserted distal (?) end of shunt. MAN, that hurt!! :eek: Didn't count on my stomach giving me such horrendous pain - thought the head would do that! Still trying to get stomach under control. Been in touch with HailiesMom a lot; that poor Hailie has had the most difficult time and they're still trying to get her better. I'm sure her mom will be along here soon. But really pleased to be able to say hi to you all again and find out how everone is!

Roll Call
 

Hi all..it's been SOOO long. Thought the original was back up again, last I heard (YESTERDAY) was they were waiting for some Mac OS CDs to come in the mail to restore everything. Sounds like that'll be up sometime in September, if you go to http://brain.hastypastry.net, there's an updated message as of the 22nd or something.

Anyway, I've been dying to share the news. I FINALLY got my programmable! It's a Medtronic Strata (I thought some of you guys had those, I don't remember). He was originally going to swap out the old VP I have, but due to the 22+ yrs it's been in, it's become a "part" of me I guess. Too much scar tissue to risk it. My neurosurgeon says it shouldn't hurt being in there. It's still on, but he doubts after so long it's totally functional to its potential. There was just too big of a risk of brain hemorrhage to pull the old shunt out.

The cool thing is, he NEVER did any ICP Bolt or lumbar puncture, so I totally got out of that icky experience. He did a trial of having the old shunt OFF (I have an OLD Medtronic MultiPurpose Valve with an on-off button). His idea was to see how I was with the shunt off for a week, BUT I didn't make it to 48 hrs without getting it turned back on. So, obviously I am shunt dependent. Really having a rough time of it through the healing process though. Nauseous a lot...not sure how normal this is as it's only my 2nd revision. Last one, I was 5 yrs old. I'm 29 now.

The sad part in all this, I lost the job I had just over 2 yrs, the day I went in and told them I was going to need off for the surgery. The department I was working in got shut down. I was in Business Development, BUT I also did some sales and stuff. They chose 2 people to go into Sales for smaller accounts and I got let go. I made over 80,000 in sales since the beginning of this year for the company. My best friend got picked who was right up there with me in amount of Sales. and so did this other girl who was pregnant, but DIDN"T EVEN COME CLOSE to the amount of sales Eric & I had...I think it was because of having so many medical appointments, with my neuro trying to figure out what was going on with my head....I'm pretty bummed... :(

We're here
 

Hey everyone. Glad to be back. Congrats hedda, thats why I haven't heard from you lately, sounds quite exciting. I am anxiously attempted to secure employment, with little success. Hailie has had lots of problems since June resulting in 7 revisions, 1 cranial expansion and 1 fenestration. She's not doing so well and we will be heading to the hospital on Wednesday. She is experiencing increased headaches, lethargy, and severe side pain, its been building for about 3 weeks now and her bradacardia still isn't dangerously low or we'd already be there. She could probably go sooner but my 17 y/o Courtney has a celebrity make-over and senior pics taken tomorrow(Tuesday), we've rescheduled twice this summer cuz of Hailie's health and I am trying not to disapoint Court again. Anyway, Hello everyone, we missed you much.

Well I saw the NS today, but going on my scans he said everything looked normal. Based on my symptoms he decided to change my valve from 30 to 50. I am hoping that will help because these headaches and dizzy spells are no fun.

Suzie

Hey Suzie... Thank you for letting me know about this first of all! And second, I really hope the change in setting will do the trick for you. Hearing about all these things makes me wonder if Megs has been having pressure issues. It seems to come and go and right now it is gone... So I don't know if she is being 2, being female, or being stubborn like her dad. Or, if it is pressure issues or a seizure coming on. Her daycare lady and I seem to be able to tell when the seizures are building, so that is good... I just wish she could tell me what is going on sometimes.

Hey Becki... You are right... I have been pretty quiet and I feel bad. But, I am sure you understand. Too bad you don't live closer, I could get you a great job... Wanna move? heehee! I was going to send Mitchell a bday card and well, that didn't happen either.

Anyway, I am hoping by next week we are all settled into the new schedule around here and I won't have so much prep work for the start of our preschool curicullum (I know that isn't spelled right, but it is too late for me to look it up!). Tonight I got stuff covered so that if my grubby little kiddos touch the calendar, etc. they won't ruin it! This weekend I am going to go in and rearrange and get everything settled so that we have a good start to school!

TTFN!

I see my NSG today for another wound check. Been getting kinda nauseous at times and temp keep hovering in the 99s. Not sure what that's all about. I am roasting in here and the air conditioning is on...flu's been going around the family, so keep your fingers x'ed that that's all it is. I don't particularly want to be back in the hospital for an infection...the ICU nurse was SO MEAN...lol

Sure wish Miss Megs could tell you. I haev just been having a lot of pressure issues and with these darn tropical storms and even the normal everyday summer thunderstorm. It is driving me nuts. My biggest thing was my balance issues and I don't have good balance to begin with.

Has anyone heard from Kathleen, they had moved right before BT crashed.

Suzie

I'm here too!
 

We are here! Thanks for thinking of me Suzie. We are safe and settled in Virginia, but things have been a bit shaky with Becca since we moved - started right before actually.

The restraint therapy camp went really well in June. I posted about that in detail right before the crash, so I am sure some of you are wondering what I am talking about. If it's not there when the real braintalk is back up, I will repost about it.

Becca has been having lots of seizures. Keppra is proving not to hold her and we are maxed out now. We saw her new neuro (Gaillard) at National Children's Medical Center in DC yesterday. She starts Lamictal tomorrow. It's a long process of getting on that one and of keppra. She will be on both for 3 months until Lamictal is at a theraputic level. She will have an EEG and MRI this month and we see the new NS (Myseros) in DC Thursday. Since there are apparently not too many more medicine options for Becca's particular epilepsy - we are hoping that a focus becomes apparent on her scans so that other options (some surgical) will be there for us in the future if necessary. She has also gained a good bit of weight really fast which concerns them as well.

Apparently, they even think it might be a shunt issue.

Prayers appreciated. All in all, she is still a little fire cracker. She started Kindergarten last week and LOVES it. Not sure which she loves more - school or the bus ride. I will post about her first day separate here. She also started soccer and loves it. Gotta love her!

It's great to see most of you here! I look forward to seeing Braintalk up and running very soon.

xo
Kathleen

(((((((((Kathleen))))))))))))) and ((((((((((((Becca)))))))))))))). Seizures suck, huh?? :( I'm so sorry to hear this. I finally made the tough decision to go back onto daily 'barbs (60 mg) after my June sz, and so far, so good...

Give Becca a squeeze for me, and hang in. I'm thinkin' of ya!


(((((((((((HUGS)))))))))))))


LIZARD :)

Kathleen as I was looking at her pics from the first day of school, I was thinking, "Man Becca has gained some weight." I know I hadn't seen a pic very recently but she looks puffy, not just gaining some weight. Hopefully the docs will have an answer for that.

Other than that she looks well and sounds like she is loving school.

Suz

Kathleen,

I'd consider the possibility that her epi meds are at least partly to blame. I ballooned on Tegretol and when my 'barbs were increased. Her blood sugar may also be affected. Does she seem hungrier than normal?


Good luck...

LIZARD :)

Hey Kathleen! I have been thinking about you a lot lately... wondering how Meg's "twin" was doing. I try to check your pic site every once in a while to watch your kiddos grow... I am sorry that Becca is having a rough patch with those nasty ol' seizures. Our golden combo right now is Topamax and Trileptal. But I have a feeling something is going to change in the next couple months... Megan has been a lot more active as far as walking and talking, so her legs aren't as roley poley. I hope you guys get it figured out... and let us know what that might be because Megs seems to do what Becca has done. :rolleyes: Love and hugs!

We are Here
 

Just a quick update on miss Hayley... Gets another eeg next week for suspected Sz activity (i.e. periods of dementia, and trembling upon awaking), her neuro-opthamologist appt went well, got good fundus photos, just a touch of pallor but looks good there. Endocrine lab check up (cyst damaging pituary already on GH replacement) not so good, cortisol low, needs to go back for more provacative testing, not good may need supplementation and surgery not sure yet, and finally sent off all her paperwork and scans for an opionion from Dr. Rekate (i.e. b/c I have 2 NS opinions to do surg now, 2 others say watch and wait, so still searching for the right answers...)
Love and Hugs to you all!

Thank God we're back!
 

G'Day all!

Have I had a rough time since we were last online! I have been sick with just about everything under the sun in the last coupel of months, including a cold, then gastro, then something like the flu (with a slight temperature and aches and pains), and I am just now trying to get rid of an annoying cough that just keeps hanging on.

To make matters worse, my computer was playing up, and when I took it to the shop, they said it had spyware, and had to completely reprogramme it, and I am still in the process of putting all the software back on. Unfortunately, my mother has my Windows 2000 discs, eventhough she swore black and blue she didn't have them and refused to even look for them, and until she sends them to me, I won't be able to do much worthwhile on my computer until I do. This is all very annoying when I have work due for uni (it is actually overdue).

So, hopefully things will start to look up from here.

Nat.

Hi Kathleen

I saw the picutres of Becca on her first day of school - cute as a button! - and I must say that when I was about Becca's age, I too put on quite a lot of weight at a rapid rate for no apparent reason. I didn't have epilepsy then, so I couldn't blame any medication. I wonder if it is a hormonal issue that could be causing the weight gain and increased appetite? Anyway, just a thought.

Nat.

Great to "see" you, Gnatty! :D




LIZARD :)

Thanks Nat! Good to see you!

I am not sure what it is. Her appetite has not really gotten bigger though. And she even started taking her pills without us having to put it in ice cream or something sweet every night. So that is a bit puzzling to us.

I guess we'll see once she's off keppra - though that will not be for about four months as slow as the lamictal build-up and the keppra wean have to go. Ugh.

I too went through a chunky phase - but not until around age 10 or so. It just happened so fast and in conjunction with the med increases. Nothing ever seems to be that simply explained though, right!?

I hope you're feeling better now, girlie. Sounds like you've had a rough time:( I hope you were able to get your work done too. I hate computer hold-ups!

Hugs,
Kathleen

Thanks Lizard and Kathleen!
 

As I suspected, my mother has all my computer discs, including Office 2000, and Office XP upgrade discs, and although she sent me the XP, I can't install it before the 2000, so I'm still waiting! It's amazing how dependent we can become on technology, isn't it!

This is always a bad time of year for me in terms of illness. Unlike you might expect, I don't often get sick in Winter, but more often, as now, in Spring. There has been so much going around, it has been hard to escape being sick.

You could be right Kathleen, the change in medication may have caused Becca's weight gain, I have heard that a number of epilepsy meds can have that effect. Unfortunately when I suddenly put on all the weight, I never really lost it again, regardless of any dieting I did. I personally believe that a lot of the weight on my stomach is actually fluid, rather than fat, because I am relatively thin everywhere else. I am currently in the process of trying to lose a bit of weight that I have managed to put on over Winter - no easy task! By the way Lizard, I think you've done a great job in losing your weight! Keep up the good work!

I must go then guys - research to do - Ugh!

Nat.

Thanks so much, Gnatty! :) Lost more last week--81 1/2 lbs gone forever. I had a crappy night with my brain last night (SPs from the hurricane remnants), and I was cold, so I looked for a sweatshirt to put on. The one I found was from a couple of years ago, before I started, and it swallowed me!! :D WOW...:eek:


LIZARD, shrinkin' away!! :D

My God Lizard, that's a fantastic effort!
 

I hope you can maintain that weight as far as possible. You won't know yourself soon!


Nat.

Thanks, hon'. :)

I can't tell you how good it feels to know I can do this--and actually eat!!! :) I will never go back to the way I used to eat ever again. I would actually get horribly sick if I tried to. It's awesome!!!!!!!!! :D




LIZARD :)

I found you!!
 

Hi, everybody! I just finished registering for this site and I'm trying to catch
up with everybody. I've finally gotten a computer in Delaware, so I won't be
offline when I go on vacation.:D

I had a bit of a scare recently when a doctor I was seeing took me off of
the pain patch I was using for the pain in my lower back and put me on
hydrocodone (generic for vicodin). I started having trouble with my bowels
and the next thing I know, I was having the same symptoms that I had with
my shunt malfunction in December. It turned out that I was so impacted due
to the pills that it caused a partial blockage of the distal end of the shunt!:eek:

My NS did a shunt tap and it was like she had flipped a switch-the pain was
completely gone!:)

I'm back to using the pain patch and I'm feeling much better. I still have a
couple of doctor appointments (not shunt related), but otherwise, I'm doing
great!

Talk to you all soon!:)

Gina

Hey, you old wench! :D Great to "see" ya!

Btw...you never did tell me...How did you get your system hooked up?? I know my hubby hasn't been to Delaware recently, or at least, he got home in good time. :D


LIZARD, who's still younger than you!!!!!! :D

Hope you're sitting down, Liz: my father hooked it up!
He can hook up a computer and connect it to the internet, but
when it comes to using a computer to access sites, he couldn't
find his way around the internet without someone to tell him
what button to push, what link to click or what to leave alone-
go figure!:rolleyes:

Now, if you'll excuse me, I have to go take my "nerve pills" and
sit in my rocking chair for a while...as soon as I find my teeth...:p

Young folks these days have no respect for their elders...:mad: :p

ME

Gina - I can DEFINITELY relate. My parents (neither of them) know much about how to do what on a computer. Dad hooked up the desktop computer I bought them (when I was working) without me having to be there watching to make sure nothing was messed up, but when it comes to e-mail, programs/software, it's like "Kathi why isn't this working???" Lol... it's funny, I'm the one with the brain issues and can both run a computer and put one together in my sleep and well... they can't. LOL :) Glad to have you back with us.

Now that the nausea from the pain medication I was on from my shunt revision last month has stopped I am totally 100% better! Now, if I can just get these sniffles/this cold nipped in the bud...just came on today... ;)

Kathi, I know what you mean about your parents asking you questions
about the computer. My parents will be doing (whatever it is) on the
computer, run into a problem and ask me how to fix it! If I say that I
don't know, they tell me that I should be able to figure out what's wrong
with the computer, because I use it everyday.:confused: Now, correct
me if I'm wrong, but that would be like having Mom's car break down on
the interstate on the way home to Baltimore and me telling her that she
ought to be able to fix it all by herself because she drives it every day!:rolleyes:

I'm glad that your nausea has stopped and I hope you get over your
cold soon, too.:)

Gina

Well it took me only ten days after Lizard emailed me about this site to get around to signing up :) I've been on a major hibernate-and-do-nothing kick for about a month, which is not a good thing when you are freelance...

OK, quick summary.

The bad news:
* Maria loves to pull apart her hearing aids into small, child-choking pieces
* Her height and weight have plateaued for months (but the good news is that now that we give her more food her appetite has increased)
* She has had swollen eyelids for about six weeks now and after seeing several doctors it was finally diagnosed as chalazion. There are these glands in the eye which produce oil. If they get blocked, they swell (and even burst) and it's not a good thing. So it's a little like hydrocephalus (except for the bursting part). She's not responding to treatment so probably next week they get to knock her out and lance the swellings.
* The PT has decided it is time for AFOs

The good news:
* She's much better at sitting and can generally manage to sit in a high chair at a restaurant if she's not too tired
* She loves spicy food (being a New Mexico girl, she BETTER love spicy food)
* She's getting pretty decent at picking up pieces of food to eat and can handle chunky food
* We got her in a study on kids with cortical vision impairment and auditory neuropathy
* Her dad FINALLY got his permanent status and work permit. This was just in time to be an extra in the new Jamie Foxx movie they are filming in Mesa. He's had one scene where Foxx hands him something and he salutes, so he might actually be visible in the final movie.
* Her BAERs continue to show steady improvement in auditory brainstem response. Also, she has started waking up to loud noises, which she NEVER used to do.

And, most important, Maria has her very own music video, produced right about the time the old forums went down. Check out her page at http://cyjon.net/maria.php and it's the one uploaded July 16.

Hey, Andy! :)

I'm glad you made it. :)



LIZARD :)

Hey Andy, loved the video!!!! Great job, Maria looks great!!