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  #1  
Old 08-11-2009, 01:51 PM
Denese Denese is offline
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Join Date: Oct 2006
Posts: 30
Default What's new

Literally...what's new in the won't touch 'em with a 10ft pole cases?
I love you people here dearly I hope you know that..it kills me to be here though.
Hoping someone is still around on top of things or a lurker who remembers us & could help direct me.
We have enjoyed kicking the can down the road for a couple years now & the thought of jumping back in to researching & fighting is really more than I can bear.
Took a lot just to post this.
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Mom to Jonathan, he's 19...'nuff said. Bradley, he's 9...dx'd hydro,severe SVS, Chiari, PTC, csf leaks, high venous pressure. When he grows up he wants to be a Power Ranger who moonlights as a paleintologist, forensic scientist, cop. Gotta' love him.
Serenity..courage..wisdom
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Old 08-11-2009, 01:56 PM
laura.xx laura.xx is offline
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Location: Ontario, Canada
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Hmm, nothing much
How about you?
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Laura. 20 year old music fanatic
Born 3 months premature with spinal meningitis. Dx'ed with chronic hydrocephalus due to a second occurrence of meningitis. VP shunt fitted at 3 months corrected age, revisions at 2.5years, 7 years, 17 years (x2), and 18.
Now using two Codman programmables (left & right)
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Old 08-11-2009, 03:01 PM
LIZARD LIZARD is offline
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Exclamation

DENESE!!!!!!!!!

I have MISSED YOU, Friend!!!!!!

How's Master Bradley?? I don't know if he remembers anything about me , but I looked up to him for a LONG time as a courageous role model for an old shunted lady.

You may have seen my posts recently about switching to Keppra. No more 'barbs...and the stuff WORKS!!!!!!!! We had a monster T-storm and 20-degree warm-up yesterday that would ordinarily have landed me in bed, holding my head, burning up (gotta love the hypothalamus ), and refusing to eat (the only good thing about them ), but now I have less appetite (thanks again, Keppra! ), apparently complete sz control (judging from my sleep loss as a result of my endo switching my thyroid med), and Drew is entering HS!! (Caren leaves for college in a few weeks, too. I'm only 25! How'd this happen??!! )

You sound overwhelmed, honey. Please PM me sometime and catch me up--good, bad, ugly, etc.



LIZARD
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LIZ in Li'l Rhody; hydrocephalus dx'ed at 3 weeks old. No shunt surgery in 30 years! Epilepsy well-controlled and autoimmune issues being worked on. Mom to Caren, 19, successful ablation 4/18/07 for WPW; and Drewy, 16, (autism dx'ed at 2 1/2, 13 mm ACM dx'ed at 5 1/2, no surgery, doing awesome!!) Wife of 20 years to Don...and friend to Gina. RIP. 9/5/66-10/22/07

http://s.excoboard.com/Livingwithhyd..._Gina_Libonate
http://health.groups.yahoo.com/group/autism-chiari/
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Old 08-11-2009, 04:56 PM
Nick,Brian,andJon'sMom Nick,Brian,andJon'sMom is offline
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Hi Denese,

It's nice to "see" you. I have thought of you and Bradley often.

Marcie
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  #5  
Old 08-11-2009, 06:07 PM
CoolAngel28 CoolAngel28 is offline
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Talking

Hey Denese,

It is great to see you posting,please let us know how things are going with Bradley,and Jonathan..(or is it John? )

Take care,Kristin

Oh,also,how's Bradley'sGranny??What is she up to these days??
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CoolAngel28~"When life deals you a lemon,make lemonade and brownies." also "Life is like a box of chocolates,ya never know what you're gonna get."
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  #6  
Old 08-11-2009, 06:30 PM
DystoniaGal DystoniaGal is offline
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Wow a blast from the past. Thought about you guys when I was sitting in the NS waiting room. They have moved down to the first floor. I am now trying a new valve, OSV Smart Valve II. This was Dr P next suggestion after fixed, programmable, shunt removal didnt work. The verdict is still out on this valve.
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DYT1 positive dytonia . Dx 1989.
Deep Brain Stimuation at Shands at UF in 2003.
Hydrocephalus dx in 1/2004 due to an infection and resolved as of 4/4/08. Hydrocephalus returned and shunted 7/9/09 with OSV II,revised 8/5/09. So many CT scans I should
GLOW
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  #7  
Old 08-11-2009, 08:12 PM
Denese Denese is offline
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Geezzzz...don't know where to start...small talk 1st I guess...
Good to see the familiar names...briefly scanned thru some posts here to kinda' catch up...bums me so that it's still a struggle for so many.
Good stuff...Bradley had a good school yr last yr...2 levels above grade in reading...loves science & does well...excellent speller...math is a struggle...gets confused with all the different formulas but we work on it.
He starts 6th grade in about 2 weeks...turns 12 on Thurs.
He only missed about a dozen days...about as many as that too of coming home early or going in late...is what it is.
He has a wonderful personality & according to his dad is as stubborn or more so than me
Headaches everyday...still...tires easy..yada,yada,yada. I'd say he's slighty worse than before I dropped off the face of the earth here.
And that brings me to my post...summer has been rough...always is with the heat...we take our necessary precautions...but he's spent a good part of it in bed for several hrs at a time till it passes...the 'ole intermittent malfunctions/Chiari/whatevers....
Today was too much for me though...guess I am overwhelmed Liz...everytime he tried to get back up within 5 minutes he'd be back down...did this from 7a.m. till about 2 p.m.
Brad thinks we can just call Dr P & have some tests run & pick up where we left off...I doubt they'd see him or anyone else would for that matter...yes it's been yrs now...maybe black flags fall off charts huh?!?!
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Mom to Jonathan, he's 19...'nuff said. Bradley, he's 9...dx'd hydro,severe SVS, Chiari, PTC, csf leaks, high venous pressure. When he grows up he wants to be a Power Ranger who moonlights as a paleintologist, forensic scientist, cop. Gotta' love him.
Serenity..courage..wisdom
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  #8  
Old 08-12-2009, 02:36 AM
Nat Hyland Nat Hyland is offline
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Join Date: Oct 2006
Location: Shepparton, Australia
Posts: 620
Default Long time, no see!

Denise, it's so great to see you back again! I have wondered how Bradley was doing, because I always remember things being such a struggle for him - it's a shame to see not much has changed in that respect ! Maybe the new school year will see an improvement for him !

Anyway, it's nice to see you here. Please don't forget us, and keep us posted about how you're going!

Nat.
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  #9  
Old 08-12-2009, 11:22 PM
DystoniaGal DystoniaGal is offline
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Location: Gainesville, FL
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Sent you a PM Denese.
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DYT1 positive dytonia . Dx 1989.
Deep Brain Stimuation at Shands at UF in 2003.
Hydrocephalus dx in 1/2004 due to an infection and resolved as of 4/4/08. Hydrocephalus returned and shunted 7/9/09 with OSV II,revised 8/5/09. So many CT scans I should
GLOW
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  #10  
Old 08-13-2009, 10:59 PM
Brandon's Mom Brandon's Mom is offline
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Join Date: Oct 2006
Location: Phoenix, Arizona
Posts: 331
Wink

Denese who?????

Hey sexy mama!!!! OMG!!!! I don't even come read at this forum much anymore, just happened to do so tonight, and I couldn't be happier to see you have risen from the depths of "that place".

Goodness gracious, Bradley is almost 12???? I'm so impressed with his academic progress. Last time we talked, you had already noticed that he was good at spelling, but he hadn't started shining in the other areas yet.

Two nights ago I did a search on Facebook, to see if you were on there, because I miss ya girlfriend.

Make the calls. If the black flag is still on the charts you can tell them to stick those flagsticks where the sun don't shine, and try to help Bradley.

I love you Denese, we'll talk!
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Joy- hearing impaired and chronically ill due to ACM, mother to Brandon (10-25-87) vision impairment, CP, Hydro w/ VP shunt, MR, ADHD & has had a Hemispherectomy for seizures, Brittany (10-25-87) Hydro w/LP shunt, allergies, asthma, & learning disability, and Andrew (4-18-91) healthy & gifted

"Dream as if You'll Live Forever, Live as if You'll Die Today"
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