DADofPotsSon Posted August 25, 2006 Report Share Posted August 25, 2006 About a year ago #2 son began have seizures, Dr's treated as Epileptic Seizures with no results, the more meds the more frequent they got, then in January while in ER he had a convulsive seizure but just before his HR went to 175. Not happy with seizure DX I went searching for information and found this site. With the help of the information on this site and then demanding the PCP send us to Cleveland Clinic, we got his DX: NCS and POTS. They put him on midrodine, and toprol. He is back playing hockey, getting ready to back to college next week and running around like any other 19 yr old. Thanks for all your helpful posting Bill Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted August 26, 2006 Report Share Posted August 26, 2006 Thanks for letting us know the site has helped you. Letters like yours help keep us going! Michelle Quote Link to comment Share on other sites More sharing options...
DancingLight Posted August 26, 2006 Report Share Posted August 26, 2006 Bill,Thank you for sharing your story...Michelle has done amazing things and it is great to hear how much this site helped you. And HURRAY for the wonderful improvement in health you son has had!Emily Quote Link to comment Share on other sites More sharing options...
nadine Posted August 26, 2006 Report Share Posted August 26, 2006 I hope he has a fantastic school year. Wonderful that he is doing so well and playing hockey. That is a very physically demanding sport-- and with his diagnosis. Big hockey fans in our family. Does he play on college level? Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted August 26, 2006 Report Share Posted August 26, 2006 That's wonderful news about your son! I have read that POTS/NCS in young people generally has a great prognosis--patients can make a full recovery. Glad this forum helped you get the correct diagnosis.Katherine Quote Link to comment Share on other sites More sharing options...
Guest dionna Posted August 28, 2006 Report Share Posted August 28, 2006 i am very happy for your son! i wish him the best of luck with hockey. my man loves hockey and played all the time. he wants to play for the wild but he has ncs and they havent yet controlled his. well okay he also wants to go back to body building, do iron man, strong man, UFC (yeah over my dead body), WWE, etc. he has done a lot though already. movies, commercials, modeling, body building, marine sniper--- iraq wounded veteran... so make sure you let your son know that his dreams can only be limited to what he lets them be limited to. me and my man both went through marine basic training with it--- him also through school of infantry SOI and sniper school and Iraq where he got hit. so yes i do wish your son a lot of luck.dionna Quote Link to comment Share on other sites More sharing options...
DADofPotsSon Posted August 28, 2006 Author Report Share Posted August 28, 2006 Thanks for all your comments, yes it is good to see him moving about again, especially since all the events of the last year. Someone had a question on hockey, and yes he was a high school goalie, but has not played hockey for over a year. Just recently released to play again.The biggest problem was he being misdiagnosed as epileptic seizures for several months, though all the MRI, CAT Scans, ECG's EEG's showed non-diagnostic or normal. I kept questioning the Tachy arrhythmias, nausea, lightheadedness, palpitations and the Neuro kept insisting that it was the seizure that was causing it. His BP was usually 80/47 or lower, and they insited that was ok as he was athletic! Once when admitted to the ER he had a BP of 72/37. Eventually they had so much antiepileptic drugs in him he could not remember how to tie his shoes, yet he continued to have the seizures, infact much more frequent, six in one day! Thats when I found this site! I copied all the information I could find to help about NCS. Shopped for new doctors, found one's that would listen, the new cardio.. sent him to St. V's in Toledo and they did the HUTT and confirmed NCS and suspected POTS, and then I insisted he needed to be sent to Cleveland Clinic, which they confirmed the POTS. CC weaned him off the antiepileptic drugs. CC put him on a low dose of midrodine 1/2hr before exiting bed, Toprol, lots of salt and a min. of 2 liters of H2o, plus sit ups, and thigh muscle strengthing excersises. I believe they want a blood pooling test yet?Over a period of a couple of nights i scanned many post and made many notes to help me in proving my point. This dinet web site and the forum helped me in my presentation to the physicians and to convince them to think outside the box. He has an appointment in late Nov. with Grubbs, and I am looking forward to this myself.Again, this is a great site!Bill Quote Link to comment Share on other sites More sharing options...
corina Posted August 28, 2006 Report Share Posted August 28, 2006 hi bill,i am glad that you find this site so helpful, it is for sooo many of us. i always call it my lifesaver! you are a real good dad doing all this research. a lot of dad's are very different (although good willing). i can understand your excitement to go see dr grubb. i would love to see him too, but as i'm in europe (and it won't be paid for) i don't think i will be able to.good luck to both you and your son,corina Quote Link to comment Share on other sites More sharing options...
bttrflyamby1981 Posted August 28, 2006 Report Share Posted August 28, 2006 Hi BillI agree with you, this website and forum are indeed very helpfull! I'm glad to hear your son is doing so much better! Thanks for letting us all know. Take care,Amber Quote Link to comment Share on other sites More sharing options...
DSM3KIDZ Posted August 29, 2006 Report Share Posted August 29, 2006 I'm glad to hear your son is improving I hope his road to recovery continues. Your an awesome Dad to fight for your son's health. Update us on your apt with Dr. Grubb.Dayna Quote Link to comment Share on other sites More sharing options...
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