Guest guest Posted April 27, 2000 Report Share Posted April 27, 2000 Nope, a simple " time-out " only. During this time, I personally hope that he will pick up the " tone " that the group has and fit it when he is allow to post again. Ken ---------- Original Message ---------------------------------- From: mcamp10139@... Reply-egroups Date: Thu, 27 Apr 2000 13:36:11 EDT ><html><body> ><tt> >Has been banned from the list permanently? I thought we all learned a<BR> >lesson from that experience and that we should just get on with business.<BR> ><BR> >Mike<BR> ></tt> > ><hr> >shapeani.gif ><hr> ><tt> >This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor.</tt> ><br> > ></body></html> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2000 Report Share Posted April 27, 2000 If the problem that got this whole thing started was individual email between two people in the group but not emails too the group it would seem like a sensible solution is the two individuals should permanently block private emails to each other. I have no idea what kind of emails individuals send to each other & I do not want to know. Any sanctioning should be based on emails to the group. I do not think references to monkeys or other primates is that big of a deal. I also think that individuals should not repost individual messages -- just block any further messages for that individual. Steve mcamp10139@... wrote: > Has been banned from the list permanently? I thought we all learned a > lesson from that experience and that we should just get on with business. > > Mike > > ------------------------------------------------------------------------ > Why buy CDs? Now you can swap for them. At Switchouse.com, you can > choose from over 300,000 titles of every kind of music. Top 20 hits, > R & B, hardcore, whatever. Get the music. Forget the money. Sound good? > 1/3717/2/_/531724/_/956856980/ > ------------------------------------------------------------------------ > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2000 Report Share Posted April 28, 2000 > >>> Has been banned from the list permanently? I thought we all learned a >>> lesson from that experience and that we should just get on with business. >>> Just a couple of weeks of cooling off. >If the problem that got this whole thing started was individual email between two people in the group but not emails too the group it would seem like a sensible solution is the two individuals >should permanently block private emails to each other. If people are harrassed, as in recent manner, privately they may notify moderators. Some scary things have happened to members of various lists. Otherwise, of course, disagreements should be handled privately. Christie Ken I have no idea what kind of emails individuals send to each other & I do not want to know. Any sanctioning should be based on emails to the >group. I do not think references to monkeys or other primates is that big of a deal. I also think that individuals should not repost individual messages -- just block any further messages for that >individual. >Steve > >mcamp10139@... wrote: > >> Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2001 Report Share Posted March 17, 2001 , NACD has a website at http://www.nacd.org If you have any specific questions please email me personaly and I can share our experiences and try to answer any questions. I am off to put my little ones to bed and will get back to my emails tomorrow. Take care, > In a message dated 3/16/01 11:04:51 PM Eastern Standard Time, > joeycmiller@h... writes: > > << She > used some of their methods for a time and decided to do the NACD > (National Academy of Child Development) program instead. We are doing > this program as well. > >> > > I am sure I have read about this program too but, can you refresh my memory > ? > THANK YOU > :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2001 Report Share Posted April 2, 2001 Dear , My name is Kim and our almost 2-year old son, AJ has been diagnosed with Infantile Spasms, Hypotonia, Developmental Delays and Sensory Integration Dysfunction. AJ currently takes Valproic Acid (Generic for Depakene), Phenobarbital and as of March 20, 2001, ACTH injections. At first we thought the ACTH injections were working, but we recently noticed the IS are back and are coming in clusters again. Our Neuro. thought AJ was vitamin B6 dependant and we tried giving him vitamin B6 but that only made things worse. How long was Mallorie on the ACTH injections? If the ACTH injections don’t work, our next option is the KGD. AJ has gained a lot of weight and is blowing up like a fish with the ACTH injections, which we were told, were side effects of the drug. Any info. you can provide is greatly appreciated. Thanks and God Bless. Kim Carpenter, Mother to AJ & Wife to Al in Vista, CA. -----Original Message----- From: [mailto:joeycmiller@...] Sent: Sunday, April 01, 2001 6:48 PM Subject: [ ] Seizures are back after 1 yr. Hi Everyone, I'm sorry this is going to be a long email. Some of you know me and my daughter Mallorie who until 3 weeks ago were convinced that she was B6 dependent. She had IS at about 10 months old until 18 months old when we began giving her b6. She had been through Depakote, ACTH, Depakene, Klonopin and Topamax before the b6 with no success. She went for 1 year and 1 week seizure free with a normal EEG while only taking b6. About a month ago Mallorie began having 4 loose BMs a day. She did this for about a week or week and a half. Almost 3 weeks ago she began to have seizures again. About 2 or 3 clusters a day. They look like they did before, a shake that is mostly noticeable in her arms. Since this began she has had up to 6 clusters in one day with 3 to 10 spasms in each cluster. Our reasoning at first was that with the virus or whatever was causing the diarrhea was keeping her from absorbing the b6 and just expelling it out of her system. Until the past couple of days her BMs have still been very loose but now seem to be improving. We have taken her to a GI doc. who is running some tests to check to see if she may have Guiardia (a parasite) and to see if she is absorbing nutrients. She mentioned a test to check for vitamin A which would probably be able to tell this. We should know something by Wednesday. Mallorie also had an EEG done on Friday that hasn't been read by her neuro. yet. The EEG tech. did say that it had spikes which might possibly be Hypsarrythmia. If all the tests come back normal for parasites and absorption then she is probably not b6 dependent. It is wild to think that the seizures may of gone away on their own only to return a year later. Or maybe b6 acted as an anticonvulsant but lost it's effectiveness. Has anyone had their child's seizures go away for a year without being on any anticonvulsant medications and then return???? We are very nervous about the thought of putting her back on medication because she didn't tolerate any of them well. Even the keto. diet was a disaster for her. Mallorie is 2 1/2 yrs. old now and has been doing well developmentally. She is behind but has made a lot of progress this past year. The Infantile Spasms were idiopathic (unless she is actually is b6 dependent). I don't know if anyone here has ever heard of anything like this happening before, if you have please share your story. Thanks for listening. Take care, (mom to Mallorie) _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2001 Report Share Posted April 2, 2001 Greetings Kim, Not sue if I have previously posted you our sons progressive overview. (Please forgive me if that is so). Thought you may glean some information from it regarding epilepsy control. Trust you find it of interest. In particular, check out www.iahp.org . If you are anything like us, it will radically change your understanding of seizures, and how to approach the issue. By the way, could you fill me in on what "ACTH" and "KGD" are? Regards, & Savage. RE: [ ] Dear , My name is Kim and our almost 2-year old son, AJ has been diagnosed with Infantile Spasms, Hypotonia, Developmental Delays and Sensory Integration Dysfunction. AJ currently takes Valproic Acid (Generic for Depakene), Phenobarbital and as of March 20, 2001, ACTH injections. At first we thought the ACTH injections were working, but we recently noticed the IS are back and are coming in clusters again. Our Neuro. thought AJ was vitamin B6 dependant and we tried giving him vitamin B6 but that only made things worse. How long was Mallorie on the ACTH injections? If the ACTH injections don’t work, our next option is the KGD. AJ has gained a lot of weight and is blowing up like a fish with the ACTH injections, which we were told, were side effects of the drug. Any info. you can provide is greatly appreciated. Thanks and God Bless. Kim Carpenter, Mother to AJ & Wife to Al in Vista, CA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2001 Report Share Posted April 2, 2001 Hi , AJ was diagnosed with Myoclonic seizures at 14 months old. We got a second opinion from our current Neuro. who diagnosed him with Infantile Spasms in January 2001. We didn’t try vitamin B6 until February 2001. I was told to give him 50 mg. 3 times a day and by the 3rd day, his IS increased and he started having drop seizures, so I discontinued the B6. When we went to our Neuro appt. on the 4th day, he agreed stopping the B6 was a good idea. He said if the B6 didn’t improve the seizures, AJ probably didn’t have vitamin B6 dependant epilepsy. AJ is still taking Valproic Acid (generic for Depakene-which I feel is inhibiting is ability to learn) and Phenobarbital as well as the ACTH injections. I’ll be so glad when this 60-day treatment is done. We go to see the Neuro. today and I am going to address the fact that the Infantile Spasm clusters are back. It seems with any new treatment, AJ does well in the beginning, and once his body adjusts to the medication, he gets worse again. If the ACTH injections don’t work, our next step is the KGD. AJ is like Mallorie, he is an EXTREMELY picky eater. It’s only because of the ACTH injections that I’m now finally able to get him to eat some table food. Before all he would eat was baby jar food, I guess because of his sensory integration dysfunction. AJ feels EVERYTHING with his hands first and if it’s food and he doesn’t like the texture, he won’t eat it. I don’t see how the KGD will be an option for us if we can’t get him to eat everything at each meal. I guess we’ll cross that bridge when we get to it. I have to check AJ’s glucose level daily and noticed he’s always between Negative and Trace. I guess if it gets up there he will probably be taken off the injections. We also go to Children’s Hospital every Tuesday and Thursday to have his blood pressure taken. Because of his Sensory Integration Dysfunction, that will depend on whether or not they can get a reading from the automatic blood pressure machine. I guess I’ll close for now. Thanks and God Bless. Kim Carpenter, Mother to AJ and Wife to Al in Vista, CA. -----Original Message----- From: [mailto:joeycmiller@...] Sent: Sunday, April 01, 2001 8:10 PM Subject: [ ] Kim Hi Kim, Mallorie was only on ACTH for about 2 1/2 or 3 weeks (can't remember exactly now). The seziures worsened and she had severe diarrhea and thrush from ACTH so we had to stop that treatment. She did gain some weight though. After the ACTH the seizures decreased to about 2 or 3 a day for about a month then increased again. She was on the Keto. diet for about 3 weeks but became very weak and would not eat the required foods. It was very traumatic for her and to this day she is a very picky eater. She is very reluctant to try new foods. What happened when you gave your son B6? How much did you give him and for how long? How old was AJ when diagnosed with Infantile Spasms? Take care, > Dear , > > My name is Kim and our almost 2-year old son, AJ has been diagnosed with > Infantile Spasms, Hypotonia, Developmental Delays and Sensory Integration > Dysfunction. > > AJ currently takes Valproic Acid (Generic for Depakene), Phenobarbital and > as of March 20, 2001, ACTH injections. At first we thought the ACTH > injections were working, but we recently noticed the IS are back and are > coming in clusters again. > > Our Neuro. thought AJ was vitamin B6 dependant and we tried giving him > vitamin B6 but that only made things worse. How long was Mallorie on the > ACTH injections? If the ACTH injections don't work, our next option is the > KGD. > > AJ has gained a lot of weight and is blowing up like a fish with the ACTH > injections, which we were told, were side effects of the drug. > > Any info. you can provide is greatly appreciated. Thanks and God Bless. > > Kim Carpenter, Mother to AJ & Wife to Al in Vista, CA. > > [ ] Seizures are back after 1 yr. > > Hi Everyone, > > I'm sorry this is going to be a long email. Some of you know me and my > daughter Mallorie who until 3 weeks ago were convinced that she was B6 > dependent. She had IS at about 10 months old until 18 months old when we > began giving her b6. She had been through Depakote, ACTH, Depakene, Klonopin > and Topamax before the b6 with no success. She went for 1 year and 1 week > seizure free with a normal EEG while only taking b6. > > About a month ago Mallorie began having 4 loose BMs a day. She did this for > about a week or week and a half. Almost 3 weeks ago she began to have > seizures again. About 2 or 3 clusters a day. They look like they did before, > a shake that is mostly noticeable in her arms. Since this began she has had > up to 6 clusters in one day with 3 to 10 spasms in each cluster. > > Our reasoning at first was that with the virus or whatever was causing the > diarrhea was keeping her from absorbing the b6 and just expelling it out of > her system. Until the past couple of days her BMs have still been very loose > but now seem to be improving. We have taken her to a GI doc. who is running > some tests to check to see if she may have Guiardia (a parasite) and to see > if she is absorbing nutrients. She mentioned a test to check for vitamin A > which would probably be able to tell this. We should know something by > Wednesday. Mallorie also had an EEG done on Friday that hasn't been read by > her neuro. yet. The EEG tech. did say that it had spikes which might > possibly be Hypsarrythmia. > > If all the tests come back normal for parasites and absorption then she is > probably not b6 dependent. It is wild to think that the seizures may of gone > away on their own only to return a year later. Or maybe b6 acted as an > anticonvulsant but lost it's effectiveness. > > Has anyone had their child's seizures go away for a year without being on > any anticonvulsant medications and then return???? We are very nervous about > the thought of putting her back on medication because she didn't tolerate > any of them well. Even the keto. diet was a disaster for her. Mallorie is 2 > 1/2 yrs. old now and has been doing well developmentally. She is behind but > has made a lot of progress this past year. The Infantile Spasms were > idiopathic (unless she is actually is b6 dependent). I don't know if anyone > here has ever heard of anything like this happening before, if you have > please share your story. > > Thanks for listening. > Take care, > (mom to Mallorie) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2001 Report Share Posted April 2, 2001 Kim, Has AJ's amino acid's ever been tested? When we did this for my daughter Tasya (4 years old), and we adjusted her amino acid regimine she did remarkably well. We also switched from B6 to Pyridoxal-5-Phosphate which again improved things. She eventually was able to get off Depakote and is doing quite well. Her story is on my website at http://www.carbonbased.com/EpilepsyJourney.htm With the glucose level problem, the amino acid balance of glycine may be an issue as well as its conversion from serine. An issue you may want to discuss with you Neurologist if he is open to it. You are right in your thought that Valproic Acid may be inhibiting his ability to learn. Tasya's godmother is an MD and she was quite adamant in her fear of long-term effects of the drug. Hope this helps. In health, Mark Schauss www.cellmatewellness.com [ ] Seizures are back after 1 yr.> > Hi Everyone,> > I'm sorry this is going to be a long email. Some of you know me and my> daughter Mallorie who until 3 weeks ago were convinced that she was B6> dependent. She had IS at about 10 months old until 18 months old when we> began giving her b6. She had been through Depakote, ACTH, Depakene, Klonopin> and Topamax before the b6 with no success. She went for 1 year and 1 week> seizure free with a normal EEG while only taking b6.> > About a month ago Mallorie began having 4 loose BMs a day. She did this for> about a week or week and a half. Almost 3 weeks ago she began to have> seizures again. About 2 or 3 clusters a day. They look like they did before,> a shake that is mostly noticeable in her arms. Since this began she has had> up to 6 clusters in one day with 3 to 10 spasms in each cluster.> > Our reasoning at first was that with the virus or whatever was causing the> diarrhea was keeping her from absorbing the b6 and just expelling it out of> her system. Until the past couple of days her BMs have still been very loose> but now seem to be improving. We have taken her to a GI doc. who is running> some tests to check to see if she may have Guiardia (a parasite) and to see> if she is absorbing nutrients. She mentioned a test to check for vitamin A> which would probably be able to tell this. We should know something by> Wednesday. Mallorie also had an EEG done on Friday that hasn't been read by> her neuro. yet. The EEG tech. did say that it had spikes which might> possibly be Hypsarrythmia.> > If all the tests come back normal for parasites and absorption then she is> probably not b6 dependent. It is wild to think that the seizures may of gone> away on their own only to return a year later. Or maybe b6 acted as an> anticonvulsant but lost it's effectiveness.> > Has anyone had their child's seizures go away for a year without being on> any anticonvulsant medications and then return???? We are very nervous about> the thought of putting her back on medication because she didn't tolerate> any of them well. Even the keto. diet was a disaster for her. Mallorie is 2> 1/2 yrs. old now and has been doing well developmentally. She is behind but> has made a lot of progress this past year. The Infantile Spasms were> idiopathic (unless she is actually is b6 dependent). I don't know if anyone> here has ever heard of anything like this happening before, if you have> please share your story.> > Thanks for listening.> Take care,> (mom to Mallorie)> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2001 Report Share Posted April 3, 2001 Hi Kim, 150 mg of B6 for a 14 month old is an exorbitant amount. You did well in stopping. Check the literature in VINPOCETINE. It has stopped seizures of general origin in infants. Good luck Cuns-Rial Carpenter wrote: > Hi , > > AJ was diagnosed with Myoclonic seizures at 14 months old.We got a > second opinion from our current Neuro. who diagnosed him with > Infantile Spasms in January 2001.We didn’t try vitamin B6 until > February 2001.I was told to give him 50 mg. 3 times a day and by the > 3rd day, his IS increased and he started having drop seizures, so I > discontinued the B6.When we went to our Neuro appt. on the 4th day, he > agreed stopping the B6 was a good idea.He said if the B6 didn’t > improve the seizures, AJ probably didn’t have vitamin B6 dependant > epilepsy. > > AJ is still taking Valproic Acid (generic for Depakene-which I feel is > inhibiting is ability to learn) and Phenobarbital as well as the ACTH > injections.I’ll be so glad when this 60-day treatment is done.We go to > see the Neuro. today and I am going to address the fact that the > Infantile Spasm clusters are back.It seems with any new treatment, AJ > does well in the beginning, and once his body adjusts to the > medication, he gets worse again. > > If the ACTH injections don’t work, our next step is the KGD.AJ is like > Mallorie, he is an EXTREMELY picky eater.It’s only because of the ACTH > injections that I’m now finally able to get him to eat some table > food.Before all he would eat was baby jar food,I guess because of his > sensory integration dysfunction. AJ feels EVERYTHING with his hands > first and if it’s food and he doesn’t like the texture, he won’t eat > it.I don’t see how the KGD will be an option for us if we can’t get > him to eat everything at each meal.I guess we’ll cross that bridge > when we get to it. > > I have to check AJ’s glucose level daily and noticed he’s always > between Negative and Trace.I guess if it gets up there he will > probably be taken off the injections.We also go to Children’s Hospital > every Tuesday and Thursday to have his blood pressure taken.Because of > his Sensory Integration Dysfunction, that will depend on whether or > not they can get a reading from the automatic blood pressure machine. > > I guess I’ll close for now.Thanks and God Bless. > > Kim Carpenter, Mother to AJ and Wife to Al in Vista, CA. > > [ ] Seizures are back after 1 yr. > > > > Hi Everyone, > > > > I'm sorry this is going to be a long email. Some of you know me and > my > > daughter Mallorie who until 3 weeks ago were convinced that she was > B6 > > dependent. She had IS at about 10 months old until 18 months old > when we > > began giving her b6. She had been through Depakote, ACTH, Depakene, > Klonopin > > and Topamax before the b6 with no success. She went for 1 year and > 1 week > > seizure free with a normal EEG while only taking b6. > > > > About a month ago Mallorie began having 4 loose BMs a day. She did > this for > > about a week or week and a half. Almost 3 weeks ago she began to > have > > seizures again. About 2 or 3 clusters a day. They look like they > did before, > > a shake that is mostly noticeable in her arms. Since this began she > has had > > up to 6 clusters in one day with 3 to 10 spasms in each cluster. > > > > Our reasoning at first was that with the virus or whatever was > causing the > > diarrhea was keeping her from absorbing the b6 and just expelling > it out of > > her system. Until the past couple of days her BMs have still been > very loose > > but now seem to be improving. We have taken her to a GI doc. who is > running > > some tests to check to see if she may have Guiardia (a parasite) > and to see > > if she is absorbing nutrients. She mentioned a test to check for > vitamin A > > which would probably be able to tell this. We should know something > by > > Wednesday. Mallorie also had an EEG done on Friday that hasn't been > read by > > her neuro. yet. The EEG tech. did say that it had spikes which might > > > possibly be Hypsarrythmia. > > > > If all the tests come back normal for parasites and absorption then > she is > > probably not b6 dependent. It is wild to think that the seizures > may of gone > > away on their own only to return a year later. Or maybe b6 acted as > an > > anticonvulsant but lost it's effectiveness. > > > > Has anyone had their child's seizures go away for a year without > being on > > any anticonvulsant medications and then return???? We are very > nervous about > > the thought of putting her back on medication because she didn't > tolerate > > any of them well. Even the keto. diet was a disaster for her. > Mallorie is 2 > > 1/2 yrs. old now and has been doing well developmentally. She is > behind but > > has made a lot of progress this past year. The Infantile Spasms were > > > idiopathic (unless she is actually is b6 dependent). I don't know > if anyone > > here has ever heard of anything like this happening before, if you > have > > please share your story. > > > > Thanks for listening. > > Take care, > > (mom to Mallorie) > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2001 Report Share Posted April 3, 2001 Hi Mark, your website is great. Have you ever considered the paleo diet? See www.paleodiet.com, also see neanderthin.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2001 Report Share Posted April 3, 2001 , Impressive website. My brother Dr. Schauss first turned me on to the idea of a paleolithic diet. We are in the midst of isolating the offending elements (corn seems to be a bad one) in her diet that trigger increased susceptability. Also we are running a urine organic acid and followup plasma amino acid test on her this week. As soon as the results are ready, I'll post it to my website. In health, Mark Schauss www.cellmatewellness.com Re: [ ] > Hi Mark, your website is great. Have you ever considered the paleo diet? > See www.paleodiet.com, also see neanderthin.com > > > > > > > > _ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2001 Report Share Posted April 4, 2001 Dear & , Sorry it’s taken me so long to answer this email. You did not previously post your son’s progressive overview, which I will read after sending you my reply. I found the link you sent extremely informative. Thanks for emailing it to me. ACTH is Adrenocorticotropic Hormone injections. If it works, it completely eliminates infantile spasms. Unfortunately it isn’t working for AJ so we’re in the process of weaning him off it. His last injection won’t be until May 04, 2001. In the meantime, AJ’s Neurologist has added Topamax. We’re taking small doses, which will be increased over a period of 6 weeks. KGD is the Ketogenic Diet. This is a diet high in fats and low in protein and carbohydrates. The KGD is our next step, if the Topamax doesn’t give AJ better seizure control. I guess I better sign off for now. Thanks again and God Bless. Good Luck with your son’s treatment. Kim Carpenter -----Original Message----- From: & Savage [mailto:howard@...] Sent: Monday, April 02, 2001 8:53 AM Subject: Re: [ ] Greetings Kim, Not sue if I have previously posted you our sons progressive overview. (Please forgive me if that is so). Thought you may glean some information from it regarding epilepsy control. Trust you find it of interest. In particular, check out www.iahp.org . If you are anything like us, it will radically change your understanding of seizures, and how to approach the issue. By the way, could you fill me in on what " ACTH " and " KGD " are? Regards, & Savage. ----- Original Message ----- From: Carpenter Sent: Monday, April 02, 2001 12:33 PM Subject: RE: [ ] Dear , My name is Kim and our almost 2-year old son, AJ has been diagnosed with Infantile Spasms, Hypotonia, Developmental Delays and Sensory Integration Dysfunction. AJ currently takes Valproic Acid (Generic for Depakene), Phenobarbital and as of March 20, 2001, ACTH injections. At first we thought the ACTH injections were working, but we recently noticed the IS are back and are coming in clusters again. Our Neuro. thought AJ was vitamin B6 dependant and we tried giving him vitamin B6 but that only made things worse. How long was Mallorie on the ACTH injections? If the ACTH injections don’t work, our next option is the KGD. AJ has gained a lot of weight and is blowing up like a fish with the ACTH injections, which we were told, were side effects of the drug. Any info. you can provide is greatly appreciated. Thanks and God Bless. Kim Carpenter, Mother to AJ & Wife to Al in Vista, CA. _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2001 Report Share Posted April 4, 2001 I think you will be very happy with KGD, be sure and do dairy free version. See paleodiet.com and neanderthin.com see also 909shot.com and thinktwice.com My son's petit mals are gone on low carb paleodiet. /4/01 -0700, you wrote: Dear & , Sorry it s taken me so long to answer this email. You did not previously post your son s progressive overview, which I will read after sending you my reply. I found the link you sent extremely informative. Thanks for emailing it to me. ACTH is Adrenocorticotropic Hormone injections. If it works, it completely eliminates infantile spasms. Unfortunately it isn t working for AJ so we re in the process of weaning him off it. His last injection won t be until May 04, 2001. In the meantime, AJ s Neurologist has added Topamax. KGD is the Ketogenic Diet. This is a diet high in fats and low in protein and carbohydrates. The KGD is our next step, if the Topamax doesn t give AJ better seizure control. I guess I better sign off for now. Thanks again and God Bless. Good Luck with your son s treatment. Kim Carpenter Re: [ ] Greetings Kim, Not sue if I have previously posted you our sons progressive overview. (Please forgive me if that is so). Thought you may glean some information from it regarding epilepsy control. Trust you find it of interest. In particular, check out www.iahp.org . If you are anything like us, it will radically change your understanding of seizures, and how to approach the issue. By the way, could you fill me in on what " ACTH " and " KGD " are? Regards, & Savage. RE: [ ] Dear , My name is Kim and our almost 2-year old son, AJ has been diagnosed with Infantile Spasms, Hypotonia, Developmental Delays and Sensory Integration Dysfunction. AJ currently takes Valproic Acid (Generic for Depakene), Phenobarbital and as of March 20, 2001, ACTH injections. At first we thought the ACTH injections were working, but we recently noticed the IS are back and are coming in clusters again. Our Neuro. thought AJ was vitamin B6 dependant and we tried giving him vitamin B6 but that only made things worse. How long was Mallorie on the ACTH injections? If the ACTH injections don t work, our next option is the KGD. AJ has gained a lot of weight and is blowing up like a fish with the ACTH injections, which we were told, were side effects of the drug. Any info. you can provide is greatly appreciated. Thanks and God Bless. Kim Carpenter, Mother to AJ & Wife to Al in Vista, CA. _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2002 Report Share Posted April 11, 2002 Dawn, truce, yes agreed, I would like to continue to read and learn and post any info I find, although I think it would be more beneficial to send info to Lynn and her disclose the truth site.. a central gathering place of so much info, without having to look here and try to find a certain post...just easier the way Lynn has it all just sitting there with good headers waiting for us, thank you for your calm reply, I will do likewise from here on out, none of us needs the strain. > > > ----Original Message Follows---- > From: " joey75234 " <bobd1@e...> > Reply-SSRI medications@y... > SSRI medications@y... > Subject: Re: WARNING > Date: Wed, 10 Apr 2002 15:46:28 -0000 > > > > > > > _________________________________________________________________ > Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2002 Report Share Posted April 11, 2002 Dawn, truce, yes agreed, I would like to continue to read and learn and post any info I find, although I think it would be more beneficial to send info to Lynn and her disclose the truth site.. a central gathering place of so much info, without having to look here and try to find a certain post...just easier the way Lynn has it all just sitting there with good headers waiting for us, thank you for your calm reply, I will do likewise from here on out, none of us needs the strain. > > > ----Original Message Follows---- > From: " joey75234 " <bobd1@e...> > Reply-SSRI medications@y... > SSRI medications@y... > Subject: Re: WARNING > Date: Wed, 10 Apr 2002 15:46:28 -0000 > > > > > > > _________________________________________________________________ > Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 Dear , Did you ever expect all these land mines we'd have to work our way around??? Quite the battle, huh? Truce it is, my friend!!! Lynn has already created an additional research site, and I believe she will announce it to the groups, and I imagine an invitation will be issued soon. It will only be used as a recepticle for SSRI and other psychiatric drug information. There will be no conversation. I hope you had a nice weekend. Any good news from your end? ML, Dawn ----Original Message Follows---- From: "joey75234" Reply-SSRI medications SSRI medications Subject: Re: Date: Thu, 11 Apr 2002 15:35:38 -0000 Send and receive Hotmail on your mobile device: Click Here Dawn, truce, yes agreed, I would like to continue to read and learn and post any info I find, although I think it would be more beneficial to send info to Lynn and her disclose the truth site.. a central gathering place of so much info, without having to look here and try to find a certain post...just easier the way Lynn has it all just sitting there with good headers waiting for us, thank you for your calm reply, I will do likewise from here on out, none of us needs the strain. > > > ----Original Message Follows---- > From: " joey75234 " <bobd1@e...> > Reply-SSRI medications@y... > SSRI medications@y... > Subject: Re: WARNING > Date: Wed, 10 Apr 2002 15:46:28 -0000 > > > > > > > _________________________________________________________________ > Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 Dear , Did you ever expect all these land mines we'd have to work our way around??? Quite the battle, huh? Truce it is, my friend!!! Lynn has already created an additional research site, and I believe she will announce it to the groups, and I imagine an invitation will be issued soon. It will only be used as a recepticle for SSRI and other psychiatric drug information. There will be no conversation. I hope you had a nice weekend. Any good news from your end? ML, Dawn ----Original Message Follows---- From: "joey75234" Reply-SSRI medications SSRI medications Subject: Re: Date: Thu, 11 Apr 2002 15:35:38 -0000 Send and receive Hotmail on your mobile device: Click Here Dawn, truce, yes agreed, I would like to continue to read and learn and post any info I find, although I think it would be more beneficial to send info to Lynn and her disclose the truth site.. a central gathering place of so much info, without having to look here and try to find a certain post...just easier the way Lynn has it all just sitting there with good headers waiting for us, thank you for your calm reply, I will do likewise from here on out, none of us needs the strain. > > > ----Original Message Follows---- > From: " joey75234 " <bobd1@e...> > Reply-SSRI medications@y... > SSRI medications@y... > Subject: Re: WARNING > Date: Wed, 10 Apr 2002 15:46:28 -0000 > > > > > > > _________________________________________________________________ > Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Oops.. Just noticed my mistake... Joy has created the new SSRI-Research site. The Avenging Angel Please sign the petitions at: http://www.petitiononline.com/lilpro http://www.petitiononline.com/oky71.html http://www.petitiononline.com/effexor Please report all adverse drug reactions to: http://www.fda.gov/medwatch/index.html ----Original Message Follows---- From: "DAWN RIDER" SSRI medications Subject: Re: Re: Date: Mon, 15 Apr 2002 06:05:44 -0600 << message3.txt >> Join the world’s largest e-mail service with MSN Hotmail. Click Here Dear , Did you ever expect all these land mines we'd have to work our way around??? Quite the battle, huh? Truce it is, my friend!!! Lynn has already created an additional research site, and I believe she will announce it to the groups, and I imagine an invitation will be issued soon. It will only be used as a recepticle for SSRI and other psychiatric drug information. There will be no conversation. I hope you had a nice weekend. Any good news from your end? ML, Dawn ----Original Message Follows---- From: "joey75234" Reply-SSRI medications SSRI medications Subject: Re: Date: Thu, 11 Apr 2002 15:35:38 -0000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Oops.. Just noticed my mistake... Joy has created the new SSRI-Research site. The Avenging Angel Please sign the petitions at: http://www.petitiononline.com/lilpro http://www.petitiononline.com/oky71.html http://www.petitiononline.com/effexor Please report all adverse drug reactions to: http://www.fda.gov/medwatch/index.html ----Original Message Follows---- From: "DAWN RIDER" SSRI medications Subject: Re: Re: Date: Mon, 15 Apr 2002 06:05:44 -0600 << message3.txt >> Join the world’s largest e-mail service with MSN Hotmail. Click Here Dear , Did you ever expect all these land mines we'd have to work our way around??? Quite the battle, huh? Truce it is, my friend!!! Lynn has already created an additional research site, and I believe she will announce it to the groups, and I imagine an invitation will be issued soon. It will only be used as a recepticle for SSRI and other psychiatric drug information. There will be no conversation. I hope you had a nice weekend. Any good news from your end? ML, Dawn ----Original Message Follows---- From: "joey75234" Reply-SSRI medications SSRI medications Subject: Re: Date: Thu, 11 Apr 2002 15:35:38 -0000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Oops.. Just noticed my mistake... Joy has created the new SSRI-Research site. The Avenging Angel Please sign the petitions at: http://www.petitiononline.com/lilpro http://www.petitiononline.com/oky71.html http://www.petitiononline.com/effexor Please report all adverse drug reactions to: http://www.fda.gov/medwatch/index.html ----Original Message Follows---- From: "DAWN RIDER" SSRI medications Subject: Re: Re: Date: Mon, 15 Apr 2002 06:05:44 -0600 << message3.txt >> Join the world’s largest e-mail service with MSN Hotmail. Click Here Dear , Did you ever expect all these land mines we'd have to work our way around??? Quite the battle, huh? Truce it is, my friend!!! Lynn has already created an additional research site, and I believe she will announce it to the groups, and I imagine an invitation will be issued soon. It will only be used as a recepticle for SSRI and other psychiatric drug information. There will be no conversation. I hope you had a nice weekend. Any good news from your end? ML, Dawn ----Original Message Follows---- From: "joey75234" Reply-SSRI medications SSRI medications Subject: Re: Date: Thu, 11 Apr 2002 15:35:38 -0000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Oops.. Just noticed my mistake... Joy has created the new SSRI-Research site. The Avenging Angel Please sign the petitions at: http://www.petitiononline.com/lilpro http://www.petitiononline.com/oky71.html http://www.petitiononline.com/effexor Please report all adverse drug reactions to: http://www.fda.gov/medwatch/index.html ----Original Message Follows---- From: "DAWN RIDER" SSRI medications Subject: Re: Re: Date: Mon, 15 Apr 2002 06:05:44 -0600 << message3.txt >> Join the world’s largest e-mail service with MSN Hotmail. Click Here Dear , Did you ever expect all these land mines we'd have to work our way around??? Quite the battle, huh? Truce it is, my friend!!! Lynn has already created an additional research site, and I believe she will announce it to the groups, and I imagine an invitation will be issued soon. It will only be used as a recepticle for SSRI and other psychiatric drug information. There will be no conversation. I hope you had a nice weekend. Any good news from your end? ML, Dawn ----Original Message Follows---- From: "joey75234" Reply-SSRI medications SSRI medications Subject: Re: Date: Thu, 11 Apr 2002 15:35:38 -0000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2006 Report Share Posted July 29, 2006 I know what you are going through as many of us went through the same thing. I remember one doctor who suggested it was all in my head so I said send me to a Psychiatrist, he did, the Psychiatrist, now deceased, sent me back as he found signs of a physical problem with my back and joints. That Psychiatrist sent me to an Orthopod who started sending everything to Workmen's Comp until they denied the claim and I appealed. The end result a medical board of a General Practioner, Rheumatologist, Orthopedic Surgeon and Internist. Their diagnosis, Ankylosing Spondylitis and Rheumatoid Arthritis. That was only 12 years in the making!!!!!!! I think what we are all facing now is a backlash from doctors whose malpractice and liability insurance premiums have skyrocketed so they are very reluctant to hand you a diagnosis they are not sure of. Not all Rheumatologists agree with one another, then there are the other autoimmune diseases out there with similar signs and symptoms. Years ago while in the Canadian Armed Forces, I had a friend whose wife was diagnosed with many different diseases over a period of 5 years until she died. They then found out it was a severe form of Multiple Sclerosis. I often think that I want to have an autopsy no matter what I die of, that way maybe the medical profession may learn something. I like Jeff's comment about taking in a list of the signs and symptoms to your next doctor's visit and leave it there. Unfortunatley there are doctors out there with the " god " syndrome so a patient has to be choosey in the decision of which one to go to. There is another problem as well and that is a doctor with " gate keeper " tendencies. They try not to give you a diagnosis and pawn you off to a specialist to do the job. , I can really empathise with you and problems getting out of the bed in the morning. Heck, I am retired and I have that problem. I had to move my computer room upstairs as the stairs are becomming a real challenge for my knees and legs in general. Staying upright somedays is not easy. For me it was easier as my girls were in their late teens when I was finally diagnosed and the eldest was married and her sister followed 2 years later. I really pray for folks raising teenagers today, thankfully we did not have the Internet when my girls were growing up. My youngest daughter gave me some grief as she was always following in dad's footsteps and learning how things like calculators and watches worked by pulling them apart and putting them back together or at least trying to. I do not know what type of work you do, but I think it could help to sit down and talk with the boss about your current problems unless of course that direction could get you fired. I do know that I was always honest with my employers about my health problems and it payed off in the long run. I am sorry I can't help you out much, but I can pray for you and your family and your doctors. We've got company coming in about 15 minutes and I am dreading it as my throat is raw today. Blessings Fr. Dave Re: HLA-B27 ReA and Hypothyroid on Synthroid??? Fr. Dave: I've read many of your posts. I'm 41 live in NY. For the past two years, I've been to about 50 doctors in NY, CT, MD. Top doctors at top medical insitutions (i.e. s Hopkins). Although a few Infectious Disease doctors suspect Reiter's Syndrome... they've usually pass me along to a Rheumatologist who shoots down the diagnosis claimin I do not have the main symptom (arthritis). I have dry eyes confirmed via Schrimer Test multiple times....I have ureathritis (w/o any sign of a STD)....red eyes....gastritis and severe pain under my breastbone. I do have hip pain and spine pain. But three world reknowned Rheumtalogist say ... it's nothing. It's all in my head. Any advice / thoughts on how to get a doctor to say... yeap it's Reiters so we can begin figuring out meds / physcial therapy. I'm having a hard time getting up in the morning to go to work. It's beginning to effect my performance. I've got a wife and two young kids to support. I'm full of anxiety. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2006 Report Share Posted July 30, 2006 Thanks. Yes I've tried walking into doctor's offices w/ a Reiter's Syndrome write up. They say .. AHH YOU DON'T HAVE REITERS. YOU'RE NOT HLA B27 POSITIVE AND YOU DON'T HAVE ARTHRITIS. Only one ID doctor thus far has labeled me w/ " incomplete " Reiter's Syndrome. I'm going for a bone scan of my breastbone in early August. That's were most of my pain is. Also, I have really bad GERD. Not sure if it's from the infection (was H. Pylori positive) or from the excessive amounts of antibiotics I've taken over the past two year. I also wake up in the middle of the night w/ pain in sternum. I can not sleep through the night. I am really afraid this condition is negatively effecting my job career. Can you go on disability w/ Reiter's Syndrome? Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2006 Report Share Posted July 30, 2006 All: Thanks to all who have responded. I really found your information helpful and supportive. I do have a few more follow up questions: 1) Any one ever have Helicobacter Pylori infection or Enterococcus Faecalis? Could this have triggered RS? E. Faecalis continues to show up in various urinary cultures. 2) Are sinus infections associated w/ Reiters? 3) How about dry sinsus? (this may sound disgusting but I have no mucus / snot!) 4) Hair loss? Is this associated w/ RS? 5) Last one -- I'm thinking about trying an anti-depressant such as Welliburtin XL. I want something to not cause weight gain. 6) One more .. sorry.... is Reiter's Syndrome a chronic disease? I've read it's rare to be chronic? Usually last a few weeks after infection. I've had it for 2 years! That's all for now. God bless all of you for your help. Have a great Sunday. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2006 Report Share Posted July 30, 2006 Hi , I am so sorry to hear of your struggles. My thoughts and prayers are with you. My nephew is named , so your name conjures up a fondness in my heart. Not to mention my first hand experience/empathy for your condition. I have been diagnosed with " incomplete Reiters " because I have the eye inflammation, the urethritis but not the inflamed sacroliliac. I did test positive for B27, though. I do understand it is easier to get disability if you have the B27 gene. However, I would take heart in the fact that many folks recover and never flare again. I, too, had H-pylori and took the double antibiotics to clear it...it worked. But then got a nasty other bug (twice!!!) in my gut called proteus mirabilus which is usually a urinary track infection. Anyway, I had to go on two more rounds of antibiotics. I followed the last round with a good broad spectrum probiotic and enzymes before I eat. This helps to get your gut working well again. My MD thinks I got the proteus mirabilus from poorly washed salads from restaurants. I am " a rabbit " and love salads. So now I make all my own salads and wash them very well. When we go out I only eat cooked foods. My stomach is doing better now. I had hair loss when my thyroid was low. Many of us have thyroid issues. Some MDs say it's related to ReA others do not. I think in was in my case. Dry sinus? I don't know much about. Many of us have allergies and Sjogren's (sp?) which may involve dry sinuses...don't really know. I take a low dose of elavil/amitriptaline (25 mg) which helps with pain and takes the edge off my ever present anxiety. At such a low dose it does not cause weight gain. I hear some of us have done well on Cymbalta, too. I heard good things about Wellbutrin for hot flashes but it didn't do much for me. I have made good progress using acupuncture, Chinese herbs, fish oils and high doses of vitamin D. I eat a lot of organic foods and do gentle exercise and yoga. I do take an oral compounded progesterone (HRT) which is very helpful with inflam...but obviously not an option for men. I did have a diliatation on my urethra last April which helped with the urethra pain and now I avoid baths, the jacuzzi and certain positions in sex to maintain this status. My goal is remission and I do not talk much to MD's who will not entertain this idea. I do see an RH MD every 4 months. I see an acupuncturist weekly or bi monthly, a holistic MD (like Dr. Weil.) I am on 7.5 mg of Mobic daily...no methotrexate or other " big gun " meds. I try to live one day at a time. I avoid drama (without being an ostrich) when possible. I pray daily. I hope this helps. I am keeping you in my prayers, . I am glad you found us. Keep asking questions. in CA Hi All....I have a few questions... Quote Link to comment Share on other sites More sharing options...
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