Guest guest Posted May 15, 2000 Report Share Posted May 15, 2000 LEE HAVE YOU TRIED BOTUX? I DON'T KNOW IF IT WOULD WORK BUT, MAYBE YOU COULD LOOK INTO IT. I KNOW THEY USE IT ON OTHER DYSTONIAS. I MYSELF HAVE SPASMODIC DYSTONIA-I HAVE NO VOICE MOST OF THE TIME. JUST SQUEEKS AND SHRILL NOISES. I HAVE NEVER TRIED THIS SHOT BUT I HAVE HEARD FROM OTHERS THAT HAVE, AND IT WORKS DIFFERENT ON SOME PEOPLE. GOOD LUCK. YOU WILL BE IN MY PRAYERS. DONNA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2000 Report Share Posted May 15, 2000 I have had botox injections, when my neck movement was much worse. They helped me fall asleep easier but did nothing to ease my pain or lack of energy. I finally stopped having the injections, when my neck movement reduced a bit. Thanks --- dk143@... wrote: > LEE > > HAVE YOU TRIED BOTUX? I DON'T KNOW IF IT WOULD > WORK BUT, MAYBE YOU > COULD LOOK INTO IT. I KNOW THEY USE IT ON OTHER > DYSTONIAS. I MYSELF > HAVE SPASMODIC DYSTONIA-I HAVE NO VOICE MOST OF THE > TIME. JUST SQUEEKS > AND SHRILL NOISES. I HAVE NEVER TRIED THIS SHOT BUT > I HAVE HEARD FROM > OTHERS THAT HAVE, AND IT WORKS DIFFERENT ON SOME > PEOPLE. > GOOD LUCK. YOU WILL BE IN MY PRAYERS. > DONNA > > > ------------------------------------------------------------------------ > *--- FREE VOICEMAIL FOR YOUR HOME PHONE! ---* > With eVoice Now you can keep in touch with clients, > vendors, co-workers, > friends and family ANYTIME, ANYWHERE. Sign Up Today > for FREE! > 1/3426/5/_/817445/_/958415946/ > ------------------------------------------------------------------------ > > Your subscription details > /mygroups > > To unsubscribe > mailto:-unscubscribeegroups > > ~~~~~~~~~~~~~~~ > > “Hold on to what is good, even if it's a handful of > earth. Hold on to what you believe, even if it's a > tree that stands by itself. Hold on to what you must > do even, if it's a long way from here. Hold on to > your life, even if it's easier to let go. " - Pueblo > Prayer > > ~~~~~~~~~~~~~~~ > > The Being Sick Members Lounge..... > * FREE counselling via email > * Daily Horoscopes > * FREE psychic/tarot readings via email > * Daily cartoons > * Members Profiles, locations and birthdays > * DAILY LIVE CHAT!! > * Medical Resources, and more.... > http://www.elderwyn.com/members > <HR> <html> <img src= " http://ladyoh.tripod.com/pictures13/seashoreani.gif " ><body background= " http://www.geocities.com/ResearchTriangle/Thinktank/3121/BACKGROUNDS/clouds.jpg\ " text= " #ff0033 " > <bgsound src= " http://www.angelfire.com/ny/dianaclaire/images/caribbean2.mid " loop= " infinite " </html> __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2000 Report Share Posted May 15, 2000 Hi Lee, Welcome to the family *hug* I am sorry to hear about your chronic pain. I have no idea what your condition is... even when you explained it as cervical dystonia (spasmodic torticollis) - well ok I got the spasmodic part but body part is the torticollis? I feel that I should know this but have no clue.... cervical I am assuming cervix? If so - yuck! That must be horrible. Are you on meds for any of this? What have you tried? It gets so frustrating doesn't it *hug* don't give up - somewhere there will be an answer! And as for the house - know what you mean. We don't say - oh put that on the desk. Now we say - oh put that on the mess. Can you afford a cleaner? There are some good home help options for people who are ill.... have a look under the carers resources at http://www.elderwyn.com/medicallinks/c.html How long has this gone on for? You sound so depressed. *hug* Please feel free to vent all you need ok. We are all here to love and support you! Hang in there babe! Love Aisha. *=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*Believe that there's a light at the end of the tunnel.Believe that you may be that light for someone else.- Kobi Yamada*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=* Aisha ElderwynICQ 55461955aisha@...http://www.elderwyn.com/aishaMailing list: AishaElderwyn-subscribeegroupsBeing Sick: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2000 Report Share Posted May 16, 2000 Dear Aisha: Thanks so much for the kind welcome. Cervical dystonia is a neurological condition of the neck (cervical region of spine). For unknown reasons, my brain (and that of many others) tells my neck muscles to spasm constantly. Thus my neck always moves to the left. When it moves, it presses on nerves, which cause pain down my right side. Sometimes I can't use my right arm at all. Sometimes my right hip is affected and I have trouble walking. I have tried Botulinum Toxin injections with minimal success. I have tried Cardizem, Benadryl, Cogentin and Artane, which are supposed to help stop movement. That was unsuccessful. I do take muscle relaxants, which help somewhat but then I am not able to drive. I have to balance my functioning level with my desire for relief. I am a single mom with 2 kids, so I have to be able to function. I also take Ultram, Motrin and Percocet sometimes, when the pain gets bad. I have also turned to alternative medicine but can't always afford it. Acupuncture does give me some relief, as well as homeopathic remedies. I see a very skilled homeopath/acupuncturist but he is also expensive. I have had this for about 6 years and am on disability. I do work part-time, due to financial need. Thanks again for your kindness. I will take a look at the link. Love, Lee --- Aisha Elderwyn <aisha@...> wrote: > Hi Lee, > > Welcome to the family *hug* > > I am sorry to hear about your chronic pain. I have > no idea what your condition is... even when you > explained it as cervical dystonia (spasmodic > torticollis) - well ok I got the spasmodic part but > body part is the torticollis? I feel that I should > know this but have no clue.... cervical I am > assuming cervix? If so - yuck! That must be > horrible. > > Are you on meds for any of this? What have you > tried? It gets so frustrating doesn't it *hug* don't > give up - somewhere there will be an answer! > > And as for the house - know what you mean. We don't > say - oh put that on the desk. Now we say - oh put > that on the mess. Can you afford a cleaner? There > are some good home help options for people who are > ill.... have a look under the carers resources at > http://www.elderwyn.com/medicallinks/c.html > > How long has this gone on for? You sound so > depressed. *hug* Please feel free to vent all you > need ok. We are all here to love and support you! > Hang in there babe! > > Love Aisha. > > *=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=* > Believe that there's a light at the end of the > tunnel. > Believe that you may be that light for someone else. > - Kobi Yamada > *=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=* > > Aisha Elderwyn > ICQ 55461955 > aisha@... > http://www.elderwyn.com/aisha > Mailing list: AishaElderwyn-subscribeegroups > Being Sick: > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2000 Report Share Posted May 16, 2000 Hi Lee, "For unknown reasons, my brain (and that of many others) tells my neckmuscles to spasm constantly. Thus my neck always moves to the left." Have they tried you on anti spasmodic (sp?) medication like clonazepam?? I would have thought that any meds for myoclonic spasms would be the first choice??? But then again, these might just be for nerve spasms? I'm not sure... Well at least you know you have a brain *hug* and like me it doesn't work! Good excuse some times! LOL Do you get much support from family and friends? Being a single mom and being sick is not easy - there are lots of them here - you are all amazing! So are you in constant pain? yuck! Talk to you soon, Love Aisha. *=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*Believe that there's a light at the end of the tunnel.Believe that you may be that light for someone else.- Kobi Yamada*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=* Aisha ElderwynICQ 55461955aisha@...http://www.elderwyn.com/aishaMailing list: AishaElderwyn-subscribeegroupsBeing Sick: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2000 Report Share Posted May 17, 2000 I don't know why anti-spasmodics don't work. The muscle relaxants do help. Maybe there is no way to stop the brain from firing up those muscles. I never thought to be grateful that I have a functioning brain!!! LOL Lee --- Aisha Elderwyn <aisha@...> wrote: > Hi Lee, > > " For unknown reasons, my brain (and that of many > others) tells my neck > muscles to spasm constantly. Thus my neck always > moves to the left. " > > Have they tried you on anti spasmodic (sp?) > medication like clonazepam?? I would have thought > that any meds for myoclonic spasms would be the > first choice??? > > Well at least you know you have a brain *hug* and > like me it doesn't work! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2000 Report Share Posted May 17, 2000 Hi Lee, Glad you liked Dooksters site... keep swimming sweetie! "I don't know why anti-spasmodic don't work." I was thinking about this at 2am in the morning, as one does, and it occurred to me that the spasmodic are for nerve based problems where yours is a muscle based problem, so they wouldn't help you at all... "I never thought to be grateful that I have a functioning brain!!! LOL :)" HAHA.. yes - but its not working the right way! That's what I tell everyone - That I have a brain, seen the pictures, shame it doesn't work! Love Aisha. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2002 Report Share Posted May 20, 2002 Kathy, Wow! You assume too much from me. I am overwhelmed. I feel as though you are talking to me in a foreign language. I got passed the first sentence okay, but then you lost me. What is an immune panel? Who does this kind of stuff? What do all these abbreviations mean - IgG, IgE, IgM, and so forth. When you say " go deep " I haven't a clue as to where you're headed. Please explain. How do you know you're not looking for problems you don't even have? What kind of doctors brought all this to your attention? No doubt everyone wants to live a healthy life - but I don't want to go off the " deep end " trying to find it. I must confess that I have ventured in that direction - tried to live somewhat of a vegetarian lifestyle for awhile, raw foods, bottled water, Juiceman Juicer, etc. I have experience chelation therapy and had my hair analyzed. Didn't do a thing for me. I am currently growing some tomatoes and strawberries, but don't expect miracles to happen because I eat them. Perhaps it is all a question of balance. I am simply trying to figure out what is appropriate for me. You seem to have taken the time to figure out things most people never even consider. I appreciate your taking the time to share your experiences. Lamar wrote: > I had some help from good doctor friends, and parents just like me on > where > to go. > Initially, I would do an immune panel with titres to EBV, CMV, > Stealth, and > all vaccines. > Then I would go down deep with IgG, IgE, IgM, IgA and all subclasses. > Then after that delayed food panels, (preferabbly Great plains lab), > stool > samples for bacteria, yeast and fungas > Then I would test for Mercury, in hair, blood and urine > Then I would have the house assesed-and throw out all the volitile > things > you can, even take out rugs if needs be > Then I would go over the digestive issues accompnyanied with epilepsy, > > recharge the diet > In my humble opinion, none of us will come out normal in these > circumstances > of tests. > That is what you go for then, go for the weaknesses in your system and > work > out, and onion > peel layer the problems. I account parents more smart than any > doctor, go > with your gut. > Kathy > [ ] Finding Answers > > > > Kathy, > > > > You asked so many questions below. Do you have any advice on how to > > > find the answers? For example, how does a person know if they have > a > > problem with their immune system? What doctor can diagnose that > > problem? Since you made all those suggestions, I assume you tackled > all > > those issues. It must have taken you a considerable amount of time > to > > find the answers. I personally do not see how anyone could do it > > correctly on their own. Where did you go for help? > > > > Lamar > > > > > > wrote: > > > > > Also, go for the obvius things > > > 1. Are you in a new home? (believe it or not riply, air tight > doesn't > > > > > > always mean healthy) > > > 2. Dental work with amalgams > > > 3. Recent vaccinations > > > 4. Gut problems/too much gluten and cassein (milk and wheat) > > > 5. Prepensity to have mold or fungas in the house? > > > 6. Stress, loss of sleep? > > > 7. Viral process (stealth?) www.ccid.org , CMV? Herpes 6? > > > 8. Hows the digestive juices? > > > 9. Drink water, what kind? > > > 10. Flouride in your water, your use on teeth? > > > 11. How many black fillings do you have? > > > 12. rid the house of all organophosphates, cleaners, volitile > > > chemicals, > > > green lawn person, work environment? etc > > > 13. Any other health problems in the family? > > > 14. Any thing wrong with the immune system? > > > 15. Accident? Blow to head? Menengitis? Encephalitis? (as a > child > > > too?) > > > 16. Vaccine injury as a child? Dpt or MMR? Are you mercury > > > poisined? > > > 17. What are your copper levels? > > > 18. Zinc levels or other deficiencies? > > > 19. Relaxation excercises, no tv watching (really-it outgasses) > > > 20. What natural things do you take? > > > 21. Diet too much carbos? Diet drinks? > > > 22. Intake of protein, what kind? > > > 23. Any fatty acid problems? > > > 24. Coffee drinker? > > > > > > Answer some of these things and see a connection? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2002 Report Share Posted May 20, 2002 The IgG and all that good stuff are indicators in your immune system of what your fighting, or what your allergic to, or how your immune system reacts to foreign things or self things in the body. Most people with epilepsy have a tendancy to have problems on IgG and IgE, indicating a food allergy (even delayed) or an environmental exposure allergy. For instance, Great plains will also do an immunodeficiency panel. Benefits of the Immunodeficiency Evaluation such as: Zinc levels are measured (zinc is an important vitamin for people with autism) Known deficiencies can be treated Abnormal levels could indicate need for allergy testing Improving the immune system could lead to less infections Seizures and abnormal behaviors may respond to immune therapies That is why I went that route, for obvious reasons, for all others, without autism, it still is a viable option. I believe these looky see tests are viable, becuase they do direct you on what to do next and what to not waste your breathe on. Binstock says this..... " tests in the Basic Panel have revealed atypical elevations of EBV, CMV (most of the time this is stealth), and/or HHV6; co-occurring infections are common; and other immune atypicalities are seen in some of the panels, including -- even in this small initial sampling and with much variation from child to child: (a) atypically high elevations of vaccinal antigens or measles, ( mild elevations that may reflect adjuvant effects from other antigens or pathogens such as EBV, © non-detected antibodies against a vaccinal antigen (eg, tetanus, varicella, mumps), (d) increased or decreased numbers of Natural Killer cells, (e) impaired NK function, (f) atypical elevations of certain cytokines, (again, the workings of a stealth virus involvement) (g) altered ratios of T cell subsets, and (h) occasional skewing of the child's immunoglobulin levels. So with that information, I am told to do several things, one is that I must use a biological response modifier type of product, a product that not only works on boosting the immune system, but also dampens it at the same time and knows how and when to do that. That can mean anything from transfer factor, to ambrotose, to fatty acids, to noni, to IP-6 to Microhydin, to Quercitin, to VMA's. It is my opinion that seizures COULD be in that kind of category (needing response modfiers), we don't want to overexcite some areas of the brain, and yet, in some places you need boosting. The fact of the matter is, why have we ever thought that the immune system and the nervous system are two different entitites? THEY ARE NOT. What will transpire, is that in my opinion, you hit a core level problem, and address the deficiencies one by one or in combination with a new diet, fixing the gut, fixing the emotions, fixing the environemnt, and then when you do that, you fix how the immune system responds, give it the amplitude it needs to handle the viruses and immune deficiencies rather than being overwhelmed and overburdened by the things that is weighing it down. This will help with hormone levels, the juices of seratonin work better, the antibodies against tissue start to heal, and then you reteach the whole body that self cells are ok, and non self, not ok. You get rid of the bigger things, then the lesser things. My son has been relatively seizure free for a long period of time becuase of that. We are working on taking off all meds, and am switching over to everything natural to control them. So far so good, knock on wood. I think the deep end is living with seizures all your life, and pouring down unhealthy meds, IMHO~ Kathy [ ] Finding Answers > > > > > > > Kathy, > > > > > > You asked so many questions below. Do you have any advice on how to > > > > > find the answers? For example, how does a person know if they have > > a > > > problem with their immune system? What doctor can diagnose that > > > problem? Since you made all those suggestions, I assume you tackled > > all > > > those issues. It must have taken you a considerable amount of time > > to > > > find the answers. I personally do not see how anyone could do it > > > correctly on their own. Where did you go for help? > > > > > > Lamar > > > > > > > > > wrote: > > > > > > > Also, go for the obvius things > > > > 1. Are you in a new home? (believe it or not riply, air tight > > doesn't > > > > > > > > always mean healthy) > > > > 2. Dental work with amalgams > > > > 3. Recent vaccinations > > > > 4. Gut problems/too much gluten and cassein (milk and wheat) > > > > 5. Prepensity to have mold or fungas in the house? > > > > 6. Stress, loss of sleep? > > > > 7. Viral process (stealth?) www.ccid.org , CMV? Herpes 6? > > > > 8. Hows the digestive juices? > > > > 9. Drink water, what kind? > > > > 10. Flouride in your water, your use on teeth? > > > > 11. How many black fillings do you have? > > > > 12. rid the house of all organophosphates, cleaners, volitile > > > > chemicals, > > > > green lawn person, work environment? etc > > > > 13. Any other health problems in the family? > > > > 14. Any thing wrong with the immune system? > > > > 15. Accident? Blow to head? Menengitis? Encephalitis? (as a > > child > > > > too?) > > > > 16. Vaccine injury as a child? Dpt or MMR? Are you mercury > > > > poisined? > > > > 17. What are your copper levels? > > > > 18. Zinc levels or other deficiencies? > > > > 19. Relaxation excercises, no tv watching (really-it outgasses) > > > > 20. What natural things do you take? > > > > 21. Diet too much carbos? Diet drinks? > > > > 22. Intake of protein, what kind? > > > > 23. Any fatty acid problems? > > > > 24. Coffee drinker? > > > > > > > > Answer some of these things and see a connection? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2002 Report Share Posted May 20, 2002 Kathy, Thanks so much for providing all this information. With regard to the immunodeficiency evaluation, who exactly is Great Plains? Is it a clinic? If so, where is it located? Do you go there personally, send them a hair sample, what? How long did it take you to figure all of this out? Are you done or are you still investigating certain things? I can agree that going off the " deep end " is living with seizures when you have other options. The problem as I see it is knowing the difference between a genuine option and a wasted effort. Despite the wide range of things you take into consideration, the psychological aspects of epilepsy do not appear to be among them. Is that a valid assumption on my part? I see a great deal of concern about what goes into the body physically, but a total disregard about what goes into the mind. There is more to us than flesh, bone and electro-chemical interactions. Are we some kind of human cocktail? Is all that's needed is the right ingredients to injest or exposure ourselves to and we will be fine? What does that say about people who became epileptic because they received a physical injury at some point in their life - maybe even while they were still a fetus? Do you really think vitamins are going to come to rescue and solve their problems? Your brain is affected by more than what you eat. When it comes to your brain, don't discount one's behavior. A person's behavior can reveal a great deal. Yes, it can make you aware of problems like seizures. But, that is not all. Psychological techniques can help provide solutions. And, that is why I think psychology is used more and more in treating epilepsy today. It certainly has enabled a lot of people to learn to control their seizures with little or no medication and in the process improve their overall quality of life. Lamar wrote: > The IgG and all that good stuff are indicators in your immune system > of what > your fighting, or what your allergic to, or how your immune system > reacts to > foreign things or self things in the body. Most people with epilepsy > have a > tendancy to have problems on IgG and IgE, indicating a food allergy > (even > delayed) or an environmental exposure allergy. For instance, Great > plains > will also do an immunodeficiency panel. Benefits of the > Immunodeficiency > Evaluation such as: > Zinc levels are measured (zinc is an important vitamin for people with > > autism) > Known deficiencies can be treated > Abnormal levels could indicate need for allergy testing > Improving the immune system could lead to less infections > Seizures and abnormal behaviors may respond to immune therapies > That is why I went that route, for obvious reasons, for all others, > without > autism, it still is a viable option. I believe these looky see tests > are > viable, becuase they do direct you on what to do next and what to not > waste > your breathe on. > > Binstock says this..... " tests in the Basic Panel have revealed > > atypical > elevations of EBV, CMV (most of the time this is stealth), and/or > HHV6; > co-occurring infections are common; and > other immune atypicalities are seen in some of the panels, including > -- even > in > this small initial sampling and with much variation from child to > child: > (a) atypically high elevations of vaccinal antigens or measles, > ( mild elevations that may reflect adjuvant effects from other > antigens or > pathogens such as EBV, > © non-detected antibodies against a vaccinal antigen (eg, tetanus, > varicella, > mumps), > (d) increased or decreased numbers of Natural Killer cells, > (e) impaired NK function, > (f) atypical elevations of certain cytokines, (again, the workings of > a > stealth virus involvement) > (g) altered ratios of T cell subsets, and > (h) occasional skewing of the child's immunoglobulin levels. > > So with that information, I am told to do several things, one is that > I must > use a biological response modifier type of product, a product that not > only > works on boosting the immune system, but also dampens it at the same > time > and knows how and when to do that. That can mean anything from > transfer > factor, to ambrotose, to fatty acids, to noni, to IP-6 to Microhydin, > to > Quercitin, to VMA's. It is my opinion that seizures COULD be in > that > kind of category (needing response modfiers), we don't want to > overexcite > some areas of the brain, and yet, in some places you need boosting. > The > fact of the matter is, why have we ever thought that the immune system > and > the nervous system are two different entitites? THEY ARE NOT. What > will > transpire, is that in my opinion, you hit a core level problem, and > address > the deficiencies one by one or in combination with a new diet, fixing > the > gut, fixing the emotions, fixing the environemnt, and then when you do > that, > you fix how the immune system responds, give it the amplitude it needs > to > handle the viruses and immune deficiencies rather than being > overwhelmed and > overburdened by the things that is weighing it down. This will help > with > hormone levels, the juices of seratonin work better, the antibodies > against > tissue start to heal, and then you reteach the whole body that self > cells > are ok, and non self, not ok. You get rid of the bigger things, > then the > lesser things. My son has been relatively seizure free for a long > period > of time becuase of that. We are working on taking off all meds, and > am > switching over to everything natural to control them. So far so > good, > knock on wood. > > I think the deep end is living with seizures all your life, and > pouring down > unhealthy meds, IMHO~ > Kathy > > > [ ] Finding Answers > > > > > > > > > > Kathy, > > > > > > > > You asked so many questions below. Do you have any advice on > how to > > > > > > > find the answers? For example, how does a person know if they > have > > > a > > > > problem with their immune system? What doctor can diagnose that > > > > > problem? Since you made all those suggestions, I assume you > tackled > > > all > > > > those issues. It must have taken you a considerable amount of > time > > > to > > > > find the answers. I personally do not see how anyone could do > it > > > > correctly on their own. Where did you go for help? > > > > > > > > Lamar > > > > > > > > > > > > wrote: > > > > > > > > > Also, go for the obvius things > > > > > 1. Are you in a new home? (believe it or not riply, air tight > > > > doesn't > > > > > > > > > > always mean healthy) > > > > > 2. Dental work with amalgams > > > > > 3. Recent vaccinations > > > > > 4. Gut problems/too much gluten and cassein (milk and wheat) > > > > > 5. Prepensity to have mold or fungas in the house? > > > > > 6. Stress, loss of sleep? > > > > > 7. Viral process (stealth?) www.ccid.org , CMV? Herpes 6? > > > > > 8. Hows the digestive juices? > > > > > 9. Drink water, what kind? > > > > > 10. Flouride in your water, your use on teeth? > > > > > 11. How many black fillings do you have? > > > > > 12. rid the house of all organophosphates, cleaners, volitile > > > > > > chemicals, > > > > > green lawn person, work environment? etc > > > > > 13. Any other health problems in the family? > > > > > 14. Any thing wrong with the immune system? > > > > > 15. Accident? Blow to head? Menengitis? Encephalitis? (as > a > > > child > > > > > too?) > > > > > 16. Vaccine injury as a child? Dpt or MMR? Are you mercury > > > > > poisined? > > > > > 17. What are your copper levels? > > > > > 18. Zinc levels or other deficiencies? > > > > > 19. Relaxation excercises, no tv watching (really-it > outgasses) > > > > > 20. What natural things do you take? > > > > > 21. Diet too much carbos? Diet drinks? > > > > > 22. Intake of protein, what kind? > > > > > 23. Any fatty acid problems? > > > > > 24. Coffee drinker? > > > > > > > > > > Answer some of these things and see a connection? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2002 Report Share Posted May 20, 2002 I had some help from good doctor friends, and parents just like me on where to go. Initially, I would do an immune panel with titres to EBV, CMV, Stealth, and all vaccines. Then I would go down deep with IgG, IgE, IgM, IgA and all subclasses. Then after that delayed food panels, (preferabbly Great plains lab), stool samples for bacteria, yeast and fungas Then I would test for Mercury, in hair, blood and urine Then I would have the house assesed-and throw out all the volitile things you can, even take out rugs if needs be Then I would go over the digestive issues accompnyanied with epilepsy, recharge the diet In my humble opinion, none of us will come out normal in these circumstances of tests. That is what you go for then, go for the weaknesses in your system and work out, and onion peel layer the problems. I account parents more smart than any doctor, go with your gut. Kathy Re: [ ] new member and a few questions > > > > > > > > > Tina - > > > > > > My daughter's MRI was normal. We had a test called MRS. It showed > > damage > > to > > > the corpus closum, this didn't show up on the MRI. Hope this > > helps, > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2002 Report Share Posted May 21, 2002 Hi Lamar, Here's the link to Great Plains Lab. You'll find the information you need there. Zoe http://greatplainslaboratory.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 Zoe, Thanks for the information. I bookmarked the website. The director of Great Plans Lab is a former instructor at the University of Missouri. That's where my college education began. Small world isn't it. Lamar zoe88025 wrote: > Hi Lamar, > > Here's the link to Great Plains Lab. You'll find the information > you need there. > Zoe > http://greatplainslaboratory.com/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2002 Report Share Posted December 7, 2002 Charlene, Yes, this happened to us as well.........we started when my son was nine months old and over the next year or two he had all the tests they could think of reasonably doing....all came back normal.......fortunately our nuerologist said that was a good sign and to CONTINUE WITH REGULAR AND INTENSIVE THERAPY, as long as he was responding to it. Since we were in an early intervention program already and he was already responding we just continued to do that. The team there did not " discharge " him at age three like they did some of the " preemies " in his group, but referred him to the public school system, which is responsible from age three to age 21. That is really where our difficulties began because they operate from a different philosophy...they are less family and more indidviduallly minded AND if the child isn't failing by a certain margin, they refuse to provide services. thus if your child has responded and improved with therapy they will withdraw the therapy until they get enough behind again to put it in place again. My advice is to get the therapy you can now and learn to live with the mystery of WHY your child isn't " average " , while all the time pursuing appropriate treatment and researching other tests/possible reasons for the delay....always balancing your search for answers with quality,loving time with your child. (later, after improved sleeping when the tonsils and adenoids were removed, about two years after, we discovered after two more hearing tests that he was deaf in left ear so another surgery to improve that, but even these were not the full answer to what was going on...so at age 7 1/2 we are still living with the mystery). Best Charlene, Carol (mom to Micah and CJ) ----- Original Message ----- Quote Link to comment Share on other sites More sharing options...
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