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!