Guest guest Posted March 30, 2006 Report Share Posted March 30, 2006 Hi Janet. I only had the dystonia for 48 hours or so. It was scary! I never want it again. Do you still have problems? I never did have it . It's Brittany! Once when she was almost at the end of IVIG. She had a migraine and they just gave her the second dose of Maxalt it's a migraine med like Imitrex. It knocked her out cold! Her mouth was to the side and she would not respond. Then when she did become responsive she had an acute dystonic reaction! It looked as if she was having a stroke. Scared HER and US to death. They gave her benadryl IV and epinefern breathing treatment, called it an allergic reaction and watched her for a couple hours and sent her home, assuring us it was over and would not happen again. 24 hours later, boom it happened, to a lesser degree but pretty bad, off to the ER we went. They explained to us she must have kick started it by taking one of her other meds. We were to take benadryl for another 48 hours. Gave her some more benadryl by IV and sent us home. I pulled her off meds! I was afraid of everything. Now they still occur. They were happening every few days, then once a week, couple times a month, now she just had one and hadn't had one in a few months. They did an MRI, EEG, etc.. Still doing blood work. We see a ped. neuro. Her immuno wants her to see a movement specialist. He said the only ones that know anything about movement disorders is movement specialists. I have done my research and he is right. Unfortunately, it's like a PID hard to locate a doctor. She has however by this ped neuro and she fits all the descriptions been diagnosed with PNKD. So, we have a PID and PNKD, both rare. What are the chances of lighting striking twice??? What was your experience if you don't mind me asking? Janet, mom to Brittany CVID age 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2006 Report Share Posted March 30, 2006 Hi Janet. I only had the dystonia for 48 hours or so. It was scary! I never want it again. Do you still have problems? I never did have it . It's Brittany! Once when she was almost at the end of IVIG. She had a migraine and they just gave her the second dose of Maxalt it's a migraine med like Imitrex. It knocked her out cold! Her mouth was to the side and she would not respond. Then when she did become responsive she had an acute dystonic reaction! It looked as if she was having a stroke. Scared HER and US to death. They gave her benadryl IV and epinefern breathing treatment, called it an allergic reaction and watched her for a couple hours and sent her home, assuring us it was over and would not happen again. 24 hours later, boom it happened, to a lesser degree but pretty bad, off to the ER we went. They explained to us she must have kick started it by taking one of her other meds. We were to take benadryl for another 48 hours. Gave her some more benadryl by IV and sent us home. I pulled her off meds! I was afraid of everything. Now they still occur. They were happening every few days, then once a week, couple times a month, now she just had one and hadn't had one in a few months. They did an MRI, EEG, etc.. Still doing blood work. We see a ped. neuro. Her immuno wants her to see a movement specialist. He said the only ones that know anything about movement disorders is movement specialists. I have done my research and he is right. Unfortunately, it's like a PID hard to locate a doctor. She has however by this ped neuro and she fits all the descriptions been diagnosed with PNKD. So, we have a PID and PNKD, both rare. What are the chances of lighting striking twice??? What was your experience if you don't mind me asking? Janet, mom to Brittany CVID age 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 In a message dated 4/2/2006 3:45:54 P.M. Eastern Daylight Time, Nanashmar@... writes: Did she have other issues prior to the medicines they gave her that day? No she didn't. Janet, mom to Brittany CVID age 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Well I just got back from seeing my older sister, my brother-in-law, and my 85 yr old aunt. My sister has just been diagnosed with Mitochondria Dystonia. She has just been put on anti seizure med (I think its Depracote. I'm not sure of the spelling. Does that sound familiar to anyone?) My brother-in-law now has stage 4 liver cancer. He's been fighting this for yrs. They have had him on Chemo for the last yr. He's just been told, that he can't have any more Chemo because his blood work is off the wall. My college educated neice (about 30 yrs old), is in denial of a problem with Crystal Meth. Her marriage ended, and she lost custody of her 2 boys as a result. I have told my sister to give serious consideration to an Intervension. My aunt....bless her soul! She's 85 yrs old. She has her own home in a retirement assisted living community. She was outside about 2-3 weeks ago pulling weeds. She some how fell, and dislocated a hip that she recently had replace. Maintianiance workers, and a neighbor found her in the front yard. They got her an ambulance, and off to the hospital. They knocked her out, put her hip back, and sent her home. She now has that life alert thing on her neck. I think I've had enough for one day. Sue betterbodybuddies/?yguid=137091429 http://www.peternoone.com. Quote Link to comment Share on other sites More sharing options...
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