Saturday, December 26, 2009

Re: [epilepsy] Overstimulation leading to exclusion and the lack of understanding from family/friends....

 

(((((((Lizard)))))))  Thank you soooo much!  This disorder is so rare and progressive that the degeneration occurs so fast that it is impossible to get a handle on it.  The last thing i need is for my family to question my decisions.  I have been w/ him every second for the past 2 1/2 yrs except for when I run to the grocery store once a month and an occasional dr appt.  I can sense what's gonna happen to him!  Am I the only person that feels this way??  Laura

________________________________
From: Liz Welker <lizard110366@yahoo.com>
To: epilepsy@yahoogroups.com
Sent: Sat, December 26, 2009 5:02:54 PM
Subject: Re: [epilepsy] Overstimulation leading to exclusion and the lack of understanding from family/friends....

 
((((((((Laura) ))))))).
 
I haven't experienced this personally, but my best friend's 3 1/2 yo son has LGS, and I know she can relate to some of what you have said here. I'll be happy to put you two in touch. Just let me know. :)
 
LIZARD (Lifelong hydrocephalus, epilepsy--controlle d at last!!; autoimmune issues being worked on) :)

--- On Sat, 12/26/09, Laura Gresham <greshamlaura@ yahoo.com> wrote:

From: Laura Gresham <greshamlaura@ yahoo.com>
Subject: [epilepsy] Overstimulation leading to exclusion and the lack of understanding from family/friends. ...
To: epilepsy@yahoogroup s.com
Date: Saturday, December 26, 2009, 5:55 PM

 

Hi, there!  I have been a part of this group for a little while, but my 6 yo son's Lennox-Gastaut keeps me busy to where I cannot interact w/ you guys as much as I need to.  I like the latest discussion regarding overstimulation..  My son is overstimulated easily and, as a result, is homebound.  Has anyone had complications keeping family and friends around who are understanding to the situation?  If so, how do you deal w/ it?  My son's disorder is so hard to explain to others.  It's almost as though they have to experience it first.  While there are times I would like to do this just so I could say, "I told you so," it's not worth it to his health, which ultimately affects my girls who are 9 and 3.  It hurts so much, because I NEED MY side of the family to support me--even when the in-laws are against me.  Otherwise, I feel as though I am battling this by myself, which I can't.  Do you have some stories to share, maybe ways to explain how
touchy his case is.  The main problem is the fact that we are not able to keep commitments, because his health changes from one second to another.  Thank you.... Laura

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