Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 I think topamax is a toxin to mito kids. I've also been told tegretol and depakote are too. You may want to try a different seizure drug if at all possible. We have had success with dilatin, keppra, and lamictal. They all work for about a year or so and then seizures start again, that is the reason for the changes in meds. Good Luck. Geri-Anne and Wyatt, Complex I -- In Mito , " Willow " <Layne199@s...> wrote: > Hi Tammy > > We've used Kirkmans Pro-Bio Gold Probiotics. Here is a link to them > http://www.kirkmanlabs.com/products/probiotics/pro_bio/H_PROBIO_Gold_C > _60_Spec042.html > > If the link doesn't work you can find them through > http://www.kirkmanlabs.com > > Hope they work for > Willow > Mother to Isaiah 2, GERD, EE/EG/EC, severe gastroparesis, hiatal > hernia. Neocate 1+ only. Seizures...cause being investigated. > Currently being tested for mitochondrial disorder and/or metabolic > disorder, and the neurologist thinks he has neurofibromatosis. EEG > results pending...and possibly starting on Topamax for the seizures. > http://www.caringbridge.org/md/isaiah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 I think topamax is a toxin to mito kids. I've also been told tegretol and depakote are too. You may want to try a different seizure drug if at all possible. We have had success with dilatin, keppra, and lamictal. They all work for about a year or so and then seizures start again, that is the reason for the changes in meds. Good Luck. Geri-Anne and Wyatt, Complex I -- In Mito , " Willow " <Layne199@s...> wrote: > Hi Tammy > > We've used Kirkmans Pro-Bio Gold Probiotics. Here is a link to them > http://www.kirkmanlabs.com/products/probiotics/pro_bio/H_PROBIO_Gold_C > _60_Spec042.html > > If the link doesn't work you can find them through > http://www.kirkmanlabs.com > > Hope they work for > Willow > Mother to Isaiah 2, GERD, EE/EG/EC, severe gastroparesis, hiatal > hernia. Neocate 1+ only. Seizures...cause being investigated. > Currently being tested for mitochondrial disorder and/or metabolic > disorder, and the neurologist thinks he has neurofibromatosis. EEG > results pending...and possibly starting on Topamax for the seizures. > http://www.caringbridge.org/md/isaiah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 I have been tld that topamax is okay by Cohen. I too am on topamax for migraines though I know for sure that I am no kid! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 I have been tld that topamax is okay by Cohen. I too am on topamax for migraines though I know for sure that I am no kid! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 Geri-Ann Thanks for the info...I will look into it. Not even sure if they will start him on seizure meds. Got the EEG results back today and they were normal. He is only having about 1 seizure a month unless he is sick. He was sick from Nov-Dec and he was having them daily. NOw that he is feeling better, he has only had 1 the month of January. Is this common? Thanks Willow Mother to Isaiah 2, GERD, EE/EG/EC, severe gastroparesis, hiatal hernia. Neocate 1+ only. Seizures...cause being investigated. Currently being tested for mitochondrial disorder and/or metabolic disorder, and the neurologist thinks he has neurofibromatosis. EEG results pending...and possibly starting on Topamax for the seizures. http://www.caringbridge.org/md/isaiah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 Geri-Ann Thanks for the info...I will look into it. Not even sure if they will start him on seizure meds. Got the EEG results back today and they were normal. He is only having about 1 seizure a month unless he is sick. He was sick from Nov-Dec and he was having them daily. NOw that he is feeling better, he has only had 1 the month of January. Is this common? Thanks Willow Mother to Isaiah 2, GERD, EE/EG/EC, severe gastroparesis, hiatal hernia. Neocate 1+ only. Seizures...cause being investigated. Currently being tested for mitochondrial disorder and/or metabolic disorder, and the neurologist thinks he has neurofibromatosis. EEG results pending...and possibly starting on Topamax for the seizures. http://www.caringbridge.org/md/isaiah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 Willow, Some kids only have seizures when they are ill. Typically with those kids they are called febrile seizures. With the possibility of your son having mito, I'm not sure if they would still be considered febrile seizures though. Geri-Anne- -- In Mito , " Willow " <Layne199@s...> wrote: > Geri-Ann > > Thanks for the info...I will look into it. Not even sure if they > will start him on seizure meds. Got the EEG results back today and > they were normal. He is only having about 1 seizure a month unless > he is sick. He was sick from Nov-Dec and he was having them daily. > NOw that he is feeling better, he has only had 1 the month of > January. Is this common? > Thanks > > > Willow > Mother to Isaiah 2, GERD, EE/EG/EC, severe gastroparesis, hiatal > hernia. Neocate 1+ only. Seizures...cause being investigated. > Currently being tested for mitochondrial disorder and/or metabolic > disorder, and the neurologist thinks he has neurofibromatosis. EEG > results pending...and possibly starting on Topamax for the seizures. > http://www.caringbridge.org/md/isaiah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 Willow, Some kids only have seizures when they are ill. Typically with those kids they are called febrile seizures. With the possibility of your son having mito, I'm not sure if they would still be considered febrile seizures though. Geri-Anne- -- In Mito , " Willow " <Layne199@s...> wrote: > Geri-Ann > > Thanks for the info...I will look into it. Not even sure if they > will start him on seizure meds. Got the EEG results back today and > they were normal. He is only having about 1 seizure a month unless > he is sick. He was sick from Nov-Dec and he was having them daily. > NOw that he is feeling better, he has only had 1 the month of > January. Is this common? > Thanks > > > Willow > Mother to Isaiah 2, GERD, EE/EG/EC, severe gastroparesis, hiatal > hernia. Neocate 1+ only. Seizures...cause being investigated. > Currently being tested for mitochondrial disorder and/or metabolic > disorder, and the neurologist thinks he has neurofibromatosis. EEG > results pending...and possibly starting on Topamax for the seizures. > http://www.caringbridge.org/md/isaiah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 Hi Geri-Ann Aren't febrile seizures related to fevers? Although his increase in seizures is related to being sick, he has never had one with a fever. Maybe I have misunderstood febrile seizures. Thanks Willow > ><html><body> > > > ><tt> ><BR> >Willow, & nbsp; Some kids only have seizures when they are ill. & nbsp; >Typically <BR> >with those kids they are called febrile seizures. & nbsp; With the <BR> >possibility of your son having mito, I'm not sure if they would still ><BR> >be considered febrile seizures though.<BR> ><BR> >Geri-Anne-<BR> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 Hi Geri-Ann Aren't febrile seizures related to fevers? Although his increase in seizures is related to being sick, he has never had one with a fever. Maybe I have misunderstood febrile seizures. Thanks Willow > ><html><body> > > > ><tt> ><BR> >Willow, & nbsp; Some kids only have seizures when they are ill. & nbsp; >Typically <BR> >with those kids they are called febrile seizures. & nbsp; With the <BR> >possibility of your son having mito, I'm not sure if they would still ><BR> >be considered febrile seizures though.<BR> ><BR> >Geri-Anne-<BR> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2005 Report Share Posted January 27, 2005 They are usually associated with fevers. My son would get them though when his temp was 99. Actually any little illness use to ccause him to seize. I hope I haven't confused you more. Geri-Anne > Hi Geri-Ann > > Aren't febrile seizures related to fevers? Although his increase in > seizures is related to being sick, he has never had one with a fever. > Maybe I have misunderstood febrile seizures. > > Thanks > Willow > > > ><html><body> > > > > > > > ><tt> > ><BR> > >Willow, & nbsp; Some kids only have seizures when they are ill. & nbsp; > >Typically <BR> > >with those kids they are called febrile seizures. & nbsp; With the <BR> > >possibility of your son having mito, I'm not sure if they would still > ><BR> > >be considered febrile seizures though.<BR> > ><BR> > >Geri-Anne-<BR> Quote Link to comment Share on other sites More sharing options...
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