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)))))))))))))


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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...

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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. Love and hugs!

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!

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!




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