OT: Two new DXes

iVillage Member
Registered: 06-25-2003
OT: Two new DXes
20
Wed, 08-08-2007 - 8:36pm

As many of you know, I have a rare genetic connective tissue disorder called Ehlers-Danlos Syndrome.

-Paula

visit my blog at www.onesickmother.com

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iVillage Member
Registered: 06-25-2003
Thu, 08-09-2007 - 10:21am

I responded to a few posts individually, with some specific answers,

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 04-28-2007
Thu, 08-09-2007 - 10:48am

Hmmm,

I have a good firnd's whose dh had been having seizures. At first they thought it was vesa vega syncophy(sp), then he had a full on Grande Mal last January. They've just ruled out lupus and Just the other day my friend mentioned they think it may be a connective tissue disorder. Would that make sense? He's often fatigued and he hasn't seized since Jan, but he on medication for that.

hmmmmmmm

Dee

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iVillage Member
Registered: 06-25-2003
Thu, 08-09-2007 - 1:31pm

Dee,


Interesting

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 06-25-2003
Thu, 08-09-2007 - 1:46pm

holy crap!


I just looked up vaso-vagal syncope, and it looks very frickin' familiar.


I'm off to e-mail me doctor.


THANK YOU DEE!!!

-Paula

visit my blog at www.onesickmother.com
Avatar for betz67
iVillage Member
Registered: 03-26-2003
Thu, 08-09-2007 - 5:24pm

(((HUGS))) I'm sorry they had to have this Dx but at least you're ahead of the game and know what it is and the ped rhuemy sounds wonderful! Glad she's so on board w/ the IEPs and helping w/ the school.

Betsy

iVillage Member
Registered: 08-10-2006
Thu, 08-09-2007 - 10:26pm

Why yes it does and it makes sense. With the rebuild of my hip at a year old, I havent had problems aside from fatigue from alot of walking and the occasional popping, although I'm sure I will be a prime candidate for knee replacements in about 15-20 years when both mine give out! Hopefully they will have perfected the bionic knees by then!

My thoughts are with you all!
Christine

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Christine

iVillage Member
Registered: 10-03-2004
Fri, 08-10-2007 - 1:53am

Dear Paula,

Wow, that is still alot of news to get even though you were expecting it. Big hugs to you and yours, also I am thinking of you as tomorrow is Fri. and you should be getting some more results. You do keep busy...

I have a few questions re: Peter and extreme hypotonia: how does Peter's hypotonia affect him, what does he have trouble with because of it and what is being done for him through OT, PT? I guess not enough?

Anyways, thinking of you,

Sara

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Registered: 03-27-2003
Fri, 08-10-2007 - 9:44pm

(((Paula))))

Exhausting day.....take a rest.

I'll be thinking about you guys!

Chrystee

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iVillage Member
Registered: 06-25-2003
Sat, 08-11-2007 - 1:02am

Sara,


I wrote a huge, well-thought-out response to you this morning,

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 10-03-2004
Sat, 08-11-2007 - 1:49pm

Hi Paula,

Yes Malcolm struggles some with that same line of the body, although years of expert gaming, typing and piano playing have helped his hands and I actually do do pushup work with him when he's not doing lots of Tae Kwondo so he doesn't fall back to looking utterly ridiculous in front of the other kids during the pushup section...

As it is looking like it is time for CliffandSara to embrace homeschooling and stop looking at schools as much, I am also going to see once again what we can do about private OT/PT and insurance, maybe our pediatrician will have some more insurance code ideas.

Happy Vacation! We are also off for 2 weeks, back end of Aug.

Sara

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