Updates as of 8/20/2010

Well...it turns out that I also have a duplication at 6q25.3, just like Braeden does.  Now that could mean either that the duplication is simply affecting us differently, or that the chromosomal abnormality is not a causal factor for anything that either one of us has and that it is simply our specific 'family' of chromosomes. 


So, the best way to know is to have my mom tested as well...but it would be at her own expense...and, per Baylor Med would run around $500-700.  If in fact she does have the same abnormality, then we would need to branch out further into the family to see if certain traits are similar and those looking to/already have children in our family should get tested...just to be safe.


If not, then it could either be a spontaneous duplication in me...that Braeden inherited *sob*...or that the duplication runs in my biological father's family...of which we'll never know.  I know, there's a lot of if this or if that...but since we really can't get much more information until more tests are done...we're in limbo.  



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On to more positive topics:
My Psychology center that treats me moved Braeden's evaluation to Sept 2., instead of the 13th!!!!!  So, we should get a more accurate and thorough insight into what is going on with Braeden and his behavior issues.  Also, since the waitlist for the DARS grant for intensive behavioral therapy is so long, I found another grant/program that gets assistance for young children with special needs at risk of being hospitalized.  


It's called the YES program and it's piloting here in Bexar County.  The purpose of the program is to do whatever it takes to keep the child in their home, instead of having to be put into the psych ward or a facility for treatment.  So, we have our face-to-face interview in a few weeks to see his exact needs, and from there what they can offer in the form of supports (therapies, counseling,  etc).  This would help me come up with and provide a 'safety plan' to keep him out of the pedi psych ward.  



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Next week we will have our 5 day in-patient video EEG *ooo, yay fun!!8)*.  They plan to try to induce seizure activity, in addition to our own attempts to increase them, to get as many of every kind as possible.  The funny thing is some of the techniques they'll be doing are things he already does *like sleep deprivation*, or things that don't set off a seizure *like flashing lights*...and they won't be doing things that will give him a seizure *like having him spin/get dizzy; or get overheated...*  


So, I'm hoping they catch a lot of what they're looking for.  We're doing this to decide what treatment plan we should choose.  If a certain brain wave spike appears at any time during the EEG, then it confirms that he has Lennox-Gastaut Syndrome * a difficult-to-treat form of childhood-onset epilepsy that most often appears between the second and sixth year of life, and is characterized by frequent seizures and different seizure types; it is often accompanied by mental retardation, psychological and behavioral problems.. *, wherein we would choose the medication made specifically for LGS called Banzel and it treats both the seizures and behavioral problems *he would still need behavioral and cognitive therapy to supplement*.  


If that certain spike does not show up, then he has multiple types of seizures that don't respond to treatments, but we're going to try Zonagran, which is a new medication to treat multiple types of seizures.  But it does nothing for behaviors.  Now, I'm not one to medicate, and we're currently doing herbal treatments for anxiety and detoxing from heavy metals found in his system *along with Asbestos...so someone's in trouble!!!!!*, but if his behaviors continue as they are or worsen, then I will be putting him on a mood stabilizer.  Because I have a mild form of Bipolar, which I got from my biological father's side, he is at significant risk of developing a form of Bipolar...and yes it can manifest in children as young as Braeden.  And the earlier we begin treatment and the intensity in which we pursue it, the better chance at a functional adult life *meaning not needing to be in a facility/group home/etc*. 



So...yeah...it's gonna be a long...Long...LONG week...and I'm bringing enough baggage to rival Paris Hilton, as I have to pack not only clothes for both of us, diapers and wipes for him, things to both entertain and educate him *yes we are still going to be doing lessons!*...but enough food for the week for him as he can not have anything served from the hospital cafe except fruit.  I've been pining for a vacation...but I think someone got the wrong address...as a week in the hospital was NOT on my list of desirable vacay destinations!!!!!!