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Author Topic: Living with SZs
Nick V.
Newbie
Posts: 1
PostLiving with SZs
on: August 1, 2011, 16:34

Daugher with newly diagnosed seizures and her 4 yr old son possible abent type unknown if + EEG. Hers recently Dx in 2009, the day I was released from inhouse rehab for severe TBIs acquired from Trauma 8 to 10 wks earlier. I was struck by auto as a pedestrian. After I struck the windshield suspect I was thrown over roof onto pavement landing on side. Awoke 2 weeks later as suspecting quad ask for repeat CT MRI or Both. Woke after surgery after fusion C5C6. Would not come out of coma until wife had hospital D/C Dilatin and Fentynal Patch, I woke up next day. Daughter had rearend MVA 4 months prior sustaining whiplash and suspected TBI. Day I was released from rehab had initial main seizure requiring hospitalization. The staff and MD were very apathetic and non caring for her or her case. Having over 30 yrs of own medical care provider was very taken back and insulted by their attitude. So insulted I refused care by that facility for my TBI rehab that will require life long care. To date over $500,000.00 has been spent on my recovery. The reason I am sharing this story or experience is two fold 1. Invitation my group and 2. Awareness. Recently the list of current neuro/epiliptic providers reveal only one provider for Colorado. Yet I imagine that there must be hundreds of patients along with TBI and military veterans. In addition there are few or no coverage for TBI related issues of which seizures or nuerological problems can be included. My daughter has been waiting for a year 1st available appointment to be evaluated at the Univ of Colorado Medical Center in Denver. Since her issue is or is not related to an out of state mva more and more obscles arise. Her family now resides with us so we can insure and assist for safety. Meds and need are complicated for everyone, especially since she is on Medicaid anD providers are not that helpful. When queried daughter and dau=in=law a friend and companion they both state that the Dr. gives a non-caring impression, doesn't listen to concerns, complaint ornswer question just prescribe medication who's side effects are so interupting and without advise makes confidence of use minimal. This is were I am fortunate being invited to participate with this group. For me it has already open up avenues of awareness, enlightment and greif sharing. I hope to encourage direct involvement by other family members and daughter. Her son was a 22 week premie and has survived now 4 yrs old. He is suspected to have absent seizures and has CP issues. Thank you for this platform and Time.

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