Guest guest Posted October 23, 2008 Report Share Posted October 23, 2008 Gammaglobulin is actually known to calm the neuro system. It's used for several neuro problems off label. I would think it is suppressing something that is trying to happen more than it is causing it. I hope things turn out to be a one time thing. Ursula - mom to (15) and Macey (13, CVID) http://www.primaryimmune.org http://www.jmfworld.org http://caringbridge.org/ga/macey/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2008 Report Share Posted October 23, 2008 Thanks. That's what I thought about the neuro system, too, since I know IVIG is used for seizures and other neuro problems. I guess I'm hoping for a quick fix and not another problem! ~ From: [mailto: ] On Behalf Of Ursula Holleman Sent: Thursday, October 23, 2008 6:34 PM Subject: Re: s IVIG side effect? Gammaglobulin is actually known to calm the neuro system. It's used for several neuro problems off label. I would think it is suppressing something that is trying to happen more than it is causing it. I hope things turn out to be a one time thing. Ursula - mom to (15) and Macey (13, CVID) http://www.primaryimmune.org http://www.jmfworld.org http://caringbridge.org/ga/macey/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2008 Report Share Posted October 27, 2008 , A friend of mine had to discontinue the gammagard due to dystonia and neurological symptoms. Everybody is different. I hope that you figure out what is best :-) Teri > > Thanks. That's what I thought about the neuro system, too, since I know > IVIG is used for seizures and other neuro problems. I guess I'm hoping for > a quick fix and not another problem! > > > > ~ > > > > From: [mailto: ] On Behalf Of > Ursula Holleman > Sent: Thursday, October 23, 2008 6:34 PM > > Subject: Re: s IVIG side effect? > > > > Gammaglobulin is actually known to calm the neuro system. It's used for > several neuro problems off label. I would think it is suppressing something > that is trying to happen more than it is causing it. I hope things turn out > to be a one time thing. > > Ursula - mom to (15) and Macey (13, CVID) > http://www.primaryimmune.org > http://www.jmfworld.org > http://caringbridge.org/ga/macey/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 This is very interesting my daughter has had terrible dystonia problems. We had testing done everything came out normal. Doctor said it was not her IVIG ( Gamunex ) She was diagnosed with PNKD. WeMove website has lots of info on movement disorders. She hasn't had any dystonic episodes in a LONG time, but she does have the tremors, but not as bad as they used to be. Who really knows, makes me wonder! A friend of mine had to discontinue the gammagard due to dystonia and neurological symptoms. Janet, mom to Brittany age 17, CVID, Uriticaria & Angioedema, Vitamin D Def, Secondary Hyperparathyroidism **************A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100000075x1211625659x1200715650/aol?redir=http://\ www.freecreditreport.com/pm/default.aspx?sc=668072 & hmpgID=82 & bcd=emailf ooter) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Hi , Conner has had tremors for a number of years, they don't know what to attribute it to, we just suspected a neurological injury (he had partial seizures). He just started using Gammagard two years ago so I doubt that has anything to do with our situation. His tremors got really bad during transplant, but it has improved and is barely noticeable now. I know you had thought had seizure activity at one time. Has that been completely ruled out? It was very difficult to get Conner's seizures diagnosed. He had one abnormal overnight EEG that showed spiking in the temporal lobe, all others before that were negative. Conner responded very well to anti-seizure meds, which was how we knew we were on the right track. Take care, (NEMO carrier) Mom to Hayden (14-unknown PID) Evan (14-unknown PID) Conner (14-NEMO; transplanted 8/17/07) Kelsey (12-unknown PID and NEMO carrier) Wife to (unknown PID) www.caringbridge.org/visit/smithkids Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Hi Janet, W hat is PNKD? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Thanks for responding, ! Yes, has had seizures (6 or 7 now) and started Keppra at the end of August. He has never had an abnormal EEG, though. They think it's related to his CO2 retention. We saw the neuro today and she said the most common cause of tremors is drug side effects. Even though it's not listed as a possible side effect of Keppra, she thinks that could be the culprit. She lowered his dose down to the minimum and we will watch and see if it goes away or gets better. If not, she will pursue other issues. Did Conner's tremors get better with the anti-seizure meds? Mom to , 6 - GSD, CVID, central respiratory failure Meredith, 3 - GSD, CVID, central respiratory failure , 9 - healthy Carmel, IN www.caringbridge.org/visit/mhobbs From: [mailto: ] On Behalf Of %20 Sent: Tuesday, October 28, 2008 12:59 PM Subject: Re: s IVIG side effect? Hi , Conner has had tremors for a number of years, they don't know what to attribute it to, we just suspected a neurological injury (he had partial seizures). He just started using Gammagard two years ago so I doubt that has anything to do with our situation. His tremors got really bad during transplant, but it has improved and is barely noticeable now. I know you had thought had seizure activity at one time. Has that been completely ruled out? It was very difficult to get Conner's seizures diagnosed. He had one abnormal overnight EEG that showed spiking in the temporal lobe, all others before that were negative. Conner responded very well to anti-seizure meds, which was how we knew we were on the right track. Take care, (NEMO carrier) Mom to Hayden (14-unknown PID) Evan (14-unknown PID) Conner (14-NEMO; transplanted 8/17/07) Kelsey (12-unknown PID and NEMO carrier) Wife to (unknown PID) www.caringbridge.org/visit/smithkids Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 Hi , I don't really remember if Conner's tremors improved with anti-seizure meds, they were very mild at that time. I did want to mention that his tremors were much worse during transplant, possibly due to meds, but we also felt it was attributed to his magnesium level being so low (from cyclosporine). He had to take magnesium supplements for several months and that allowed him to be able to hold a pencil or utensils without shaking so much. It might be worth checking a Mg level for if the Keppra reduction doesn't help. (NEMO carrier) Mom to Hayden (14-unknown PID) Evan (14-unknown PID) Conner (14-NEMO; transplanted 8/17/07) Kelsey (12-unknown PID and NEMO carrier) Wife to (unknown PID) www.caringbridge.org/visit/smithkids Quote Link to comment Share on other sites More sharing options...
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