Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 my daughter had many seizures in the last two years . so lots of different meds for her.keppra was working best but now she is taking small seizures throw out the day.she just stops everything and stares and it almost seems like she is going to fall asleep eye get heavy ,sometimes it seems when she get excited she does it.doctor add new meds called zonisamide to keppra . i dont feel like she is getting that much better some days good some not ,plus keppra makes her so cranky .maybe need to see new doctor .he seems good but easy to push meds on us .we are new to this behavior of the seizures.please help thank you jaynee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 How old is your daughter? Almost seems like the seizures are adrenilan(sp) triggered?? Has she had mri to check her brain? Have they told you why they think she is having them? Maybe start logging food/drink intake ie. sugars, etc. Try to see if there is some connection to the hyper/excited affects! Seizures cause extreme fatigue! Sorry I cant help much! We are finding that our sons seizures are improving with better gastrointestinal improvement. The gi and nuero are interlinked!! Im sorry, but maybe you should look for another nuerologist! I dont think med pushers well ever really help with the cause/healing. They just tend to the easy way out and just bandage(medicate easily)! We are very blessed to have had a nuero who does not push meds/very understanding and willing to work with parents gut feelings. He even recommended a natural doc to us when we told him we was interested in one. Jennie<>< joeandjaynee <joeandjaynee@...> wrote: my daughter had many seizures in the last two years . so lots of different meds for her.keppra was working best but now she is taking small seizures throw out the day.she just stops everything and stares and it almost seems like she is going to fall asleep eye get heavy ,sometimes it seems when she get excited she does it.doctor add new meds called zonisamide to keppra . i dont feel like she is getting that much better some days good some not ,plus keppra makes her so cranky .maybe need to see new doctor .he seems good but easy to push meds on us .we are new to this behavior of the seizures.please help thank you jaynee __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 Jennie the colon or gut is your second brain, if the gut or second brain is polluted or has some sort of toxin in it as a metal then that is communicated to your first brain. Your spine is like your mother board on a computer communicating everything, you DNA is a highway of information being sent and your cells communicate with each other on these commands. Everything is at the cellular level. The colon, second brain communicates with your first brain every night when you sleep. Just a tid bit of information I have learned over the years, it's how I stopped the vomiting every day and falling down stairs, dropping things from my lupus, I am slowly cleaning out toxins. This may be confusing to you because perhaps your child is young how could they become toxic, easy it was from you in the womb, if you are toxic and whatever you have is passed onto the baby, etc. Everyone is toxic, some at higher levels than others. Simple signs of being toxic, headaches, backaches, flues, not to mention those flue shots they give people there bad. I could go on and on with information that I have studied over the years, just remember doctors only take 1 hour of nutrition in all their years of medical school. I am glad your child is improving. I am happy to see your doctor has recommended a natural doctor that is fantastic! Good luck! " Namaste " Tia Re: [ ] kids seizures How old is your daughter? Almost seems like the seizures are adrenilan(sp) triggered?? Has she had mri to check her brain? Have they told you why they think she is having them? Maybe start logging food/drink intake ie. sugars, etc. Try to see if there is some connection to the hyper/excited affects! Seizures cause extreme fatigue! Sorry I cant help much! We are finding that our sons seizures are improving with better gastrointestinal improvement. The gi and nuero are interlinked! ! Im sorry, but maybe you should look for another nuerologist! I dont think med pushers well ever really help with the cause/healing. They just tend to the easy way out and just bandage(medicate easily)! We are very blessed to have had a nuero who does not push meds/very understanding and willing to work with parents gut feelings. He even recommended a natural doc to us when we told him we was interested in one. Jennie<>< joeandjaynee <joeandjaynee> wrote: my daughter had many seizures in the last two years . so lots of different meds for her.keppra was working best but now she is taking small seizures throw out the day.she just stops everything and stares and it almost seems like she is going to fall asleep eye get heavy ,sometimes it seems when she get excited she does it.doctor add new meds called zonisamide to keppra . i dont feel like she is getting that much better some days good some not ,plus keppra makes her so cranky .maybe need to see new doctor .he seems good but easy to push meds on us .we are new to this behavior of the seizures.please help thank you jaynee ____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 our daughter had her 1st seizure christmas morning, we woke up to this. In the begining they all came in the morning before we were up. my wife would hear the noise and we would find her in the seizure already. Later they became more frequent and during all times of the day. The worse one was a seizure which the paramedics arrived at our house as usual but this time they gave her a rectal diastat. The problem was her dose was only allowed to be a max of 2.5. When we arrived at the hospital the nurse in the er asked and they told her they gave her 2.0. ten minutes later they said she was in the stage after the seizure that they usually sleep but we knew she did not look right. My wife tried to open her mouth only to find she was bitting her tongue. When asked again the paramedics said the dose was 2.5, ten minutes later they said 3.5 then even later they said 4.5. Our daughter was showing no signs of coming out and her breathing was slowing. We were asked to leave the room. A breathing tube was inserted, now she was not breathing on her own. At our request, many times, she was flown to Philladelphia Childrens Hospital. Ten hours, many tests and many meds later she started to come out and breathe on her own. All this and no answers. Our daughter is 20 months old. We are starting to log her intake and times to see if there is a link. Thank you for your reply and we pray the very best for you. Jennie <mykidshisgift@...> wrote: How old is your daughter? Almost seems like the seizures are adrenilan(sp) triggered?? Has she had mri to check her brain? Have they told you why they think she is having them? Maybe start logging food/drink intake ie. sugars, etc. Try to see if there is some connection to the hyper/excited affects! Seizures cause extreme fatigue! Sorry I cant help much! We are finding that our sons seizures are improving with better gastrointestinal improvement. The gi and nuero are interlinked!! Im sorry, but maybe you should look for another nuerologist! I dont think med pushers well ever really help with the cause/healing. They just tend to the easy way out and just bandage(medicate easily)! We are very blessed to have had a nuero who does not push meds/very understanding and willing to work with parents gut feelings. He even recommended a natural doc to us when we told him we was interested in one. Jennie<>< joeandjaynee <joeandjaynee@...> wrote: my daughter had many seizures in the last two years . so lots of different meds for her.keppra was working best but now she is taking small seizures throw out the day.she just stops everything and stares and it almost seems like she is going to fall asleep eye get heavy ,sometimes it seems when she get excited she does it.doctor add new meds called zonisamide to keppra . i dont feel like she is getting that much better some days good some not ,plus keppra makes her so cranky .maybe need to see new doctor .he seems good but easy to push meds on us .we are new to this behavior of the seizures.please help thank you jaynee __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Be careful with the meds they give your daughter, because there was a little girl I nannied for and she was on seizure meds, they kept increasing it to the point when she was nearly two they put the meds around the clock. The meds dulled her diezures so much that one exploded in her brain while she was asleep and she died. I'm not telling you this to scare you I am telling you this to let you know that the doctors don't know what the hell they are doing. Seizures have to release, because it's build up. I let mine release. For me taking seizure meds only builds me up to have a bigger one later on thats why I don't take them. The time this girl died is when the doctors decided to give her meds around the clock. The natural seizure herb I use is called " Etherium Gold " I take it in water at night about a 1/8 of a teaspoon and it helps a lot! It doesn't hurt you and there are no side effects. http://www.harmonicinnerprizes.com/etherium-gold.html?source=google & c1=ppc & kw=et\ herium-gold Please just be careful! " Namaste " Tia Re: [ ] kids seizures our daughter had her 1st seizure christmas morning, we woke up to this. In the begining they all came in the morning before we were up. my wife would hear the noise and we would find her in the seizure already. Later they became more frequent and during all times of the day. The worse one was a seizure which the paramedics arrived at our house as usual but this time they gave her a rectal diastat. The problem was her dose was only allowed to be a max of 2.5. When we arrived at the hospital the nurse in the er asked and they told her they gave her 2.0. ten minutes later they said she was in the stage after the seizure that they usually sleep but we knew she did not look right. My wife tried to open her mouth only to find she was bitting her tongue. When asked again the paramedics said the dose was 2.5, ten minutes later they said 3.5 then even later they said 4.5. Our daughter was showing no signs of coming out and her breathing was slowing. We were asked to leave the room. A breathing tube was inserted, now she was not breathing on her own. At our request, many times, she was flown to Philladelphia Childrens Hospital. Ten hours, many tests and many meds later she started to come out and breathe on her own. All this and no answers. Our daughter is 20 months old. We are starting to log her intake and times to see if there is a link. Thank you for your reply and we pray the very best for you. Jennie <mykidshisgift> wrote: How old is your daughter? Almost seems like the seizures are adrenilan(sp) triggered?? Has she had mri to check her brain? Have they told you why they think she is having them? Maybe start logging food/drink intake ie. sugars, etc. Try to see if there is some connection to the hyper/excited affects! Seizures cause extreme fatigue! Sorry I cant help much! We are finding that our sons seizures are improving with better gastrointestinal improvement. The gi and nuero are interlinked! ! Im sorry, but maybe you should look for another nuerologist! I dont think med pushers well ever really help with the cause/healing. They just tend to the easy way out and just bandage(medicate easily)! We are very blessed to have had a nuero who does not push meds/very understanding and willing to work with parents gut feelings. He even recommended a natural doc to us when we told him we was interested in one. Jennie<>< joeandjaynee <joeandjaynee> wrote: my daughter had many seizures in the last two years . so lots of different meds for her.keppra was working best but now she is taking small seizures throw out the day.she just stops everything and stares and it almost seems like she is going to fall asleep eye get heavy ,sometimes it seems when she get excited she does it.doctor add new meds called zonisamide to keppra . i dont feel like she is getting that much better some days good some not ,plus keppra makes her so cranky .maybe need to see new doctor .he seems good but easy to push meds on us .we are new to this behavior of the seizures.please help thank you jaynee ____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Drugs are a funky thing. You may find that some work worse than others...and that some have opposite effects. For our 14 month old, we had gone through 8 different drugs... Phenobarbital (8th month for 10 days) -> head to toe rash...no seizures Neurontin (8.5th month for 2 weeks) -> Introduction to double seizures couple times a week Keppra (9 - 12th month) -> Introduction to triple seizures every couple/few weeks...then up to 21 a day Diastat (11.5th month twice)-> Intro to comas...no seizures the first time, then no relief of seizures the second time Atavan (11.75th month one night)-> Intro to psychosis, no sleep for a whole day, and no relief for seizures. Supposed to be a sedative...more like a belligerent drunk who just won't sleep it off. Dilantin (Same night as Atavan...oh, and Diastat that day too) -> Reintroduction to rash and the only 11 minute seizure (all others were no longer than 2 minutes) Clonazepam (11.85th month for 2 days)-> Intro to paralysis (in a baby that was already taking 2 steps and now couldn't lift head for weeks) and no relief of seizures...pretty much a coma state with seizures. Every time he'd nod off, he'd have a seizure 20 minutes later. Topamax (12th month until now...1.5 months) -> Finally some help. The seizures were so quick and silent, that it was hard to catch them...but seizures didn't go away until we ditched the Keppra completely. Keppra can cause seizures, apparently. We had quite the rollercoaster ride, and it's hard to say if our extra activities didn't help. I got desperate that 12th month and did stuff like going to chiropractor, craniosacral therapy, added a BUNCH of supplements. We still give him some of the supplements and something is working because he's the happiest he's been. He's now taking 3 steps, feeding himself, and can play by himself for hours. Current supplements: Saiko-keishi-to (1 pill each meal) Vitamin E (400 IU) Vitamin B Complex (75...50 and 1/2 of a 50) Omega 3,6.9 (ChildLife 1 tsp) Multivitamin and minerals (ChildLife 1 tsp) B6 (50) Things that we gave at the beginning and have since dropped: Acidophilus Calcium Hope our story can help, Helena On 1/5/07, Tia Royer <tiaroyer@...> wrote: > > Be careful with the meds they give your daughter, because there was a > little girl I nannied for and she was on seizure meds, they kept increasing > it to the point when she was nearly two they put the meds around the clock. > The meds dulled her diezures so much that one exploded in her brain while > she was asleep and she died. I'm not telling you this to scare you I am > telling you this to let you know that the doctors don't know what the hell > they are doing. Seizures have to release, because it's build up. I let mine > release. For me taking seizure meds only builds me up to have a bigger one > later on thats why I don't take them. > > The time this girl died is when the doctors decided to give her meds > around the clock. The natural seizure herb I use is called " Etherium Gold " I > take it in water at night about a 1/8 of a teaspoon and it helps a lot! It > doesn't hurt you and there are no side effects. > http://www.harmonicinnerprizes.com/etherium-gold.html?source=google & c1=ppc & kw=et\ herium-gold > > Please just be careful! > > " Namaste " > Tia > > Re: [ ] kids seizures > > our daughter had her 1st seizure christmas morning, we woke up to this. In > the begining they all came in the morning before we were up. my wife would > hear the noise and we would find her in the seizure already. Later they > became more frequent and during all times of the day. The worse one was a > seizure which the paramedics arrived at our house as usual but this time > they gave her a rectal diastat. The problem was her dose was only allowed to > be a max of 2.5. When we arrived at the hospital the nurse in the er asked > and they told her they gave her 2.0. ten minutes later they said she was > in the stage after the seizure that they usually sleep but we knew she did > not look right. My wife tried to open her mouth only to find she was bitting > her tongue. When asked again the paramedics said the dose was 2.5, ten > minutes later they said 3.5 then even later they said 4.5. Our daughter > was showing no signs of coming out and her breathing was slowing. We were > asked to leave the room. > A breathing tube was inserted, now she was not breathing on her own. At > our request, many times, she was flown to Philladelphia Childrens Hospital. > Ten hours, many tests and many meds later she started to come out and > breathe on her own. All this and no answers. > Our daughter is 20 months old. We are starting to log her intake and times > to see if there is a link. > Thank you for your reply and we pray the very best for you. > > Jennie <mykidshisgift> wrote: > How old is your daughter? Almost seems like the seizures are adrenilan(sp) > triggered?? Has she had mri to check her brain? Have they told you why they > think she is having them? Maybe start logging food/drink intake ie. sugars, > etc. Try to see if there is some connection to the hyper/excited affects! > Seizures cause extreme fatigue! Sorry I cant help much! We are finding that > our sons seizures are improving with better gastrointestinal improvement. > The gi and nuero are interlinked! ! Im sorry, but maybe you should look for > another nuerologist! I dont think med pushers well ever really help with the > cause/healing. They just tend to the easy way out and just bandage(medicate > easily)! We are very blessed to have had a nuero who does not push meds/very > understanding and willing to work with parents gut feelings. He even > recommended a natural doc to us when we told him we was interested in one. > Jennie<>< > > joeandjaynee <joeandjaynee> wrote: my daughter had many > seizures in the last two years . so lots of > different meds for her.keppra was working best but now she is taking > small seizures throw out the day.she just stops everything and stares > and it almost seems like she is going to fall asleep eye get heavy > ,sometimes it seems when she get excited she does it.doctor add new meds > called zonisamide to keppra . i dont feel like she is getting that much > better some days good some not ,plus keppra makes her so cranky .maybe > need to see new doctor .he seems good but easy to push meds on us .we > are new to this behavior of the seizures.please help thank you jaynee > > ____________ _________ _________ _________ _________ __ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 Helen, You might research both magnesium and L-theanine as well. The theanine increases the GABA in the brain but does it differently than Atavan and other medications. Different receptacles I believe. Calcium should be considered as well. Taurine is available from BioMax in a liquid form, 1-800-819-5631. Other nutritional supports--quotes from different sources that I use regularly are: " According to case reports, the number of seizures dropped significantly when people with epilepsy took 180mg of DMG daily. When they stopped taking the supplement, they experienced considerably more episodes. " Freed, W. J., Archives of Neurology, 1984; 41(11): 1129-30. From Atkins' " Vita-nutrient Solution " book. He say that " ...small clinical trials involving people have failed to find a benefit. On the other hand, anecdotal evidence from doctors who use it is far different. " The " Complementary and Alternative Therapies for Epilepsy " book mentioned on this site before has an excellent chapter on nutritional approaches to epilepsy. One of the authors is Schachter, MD. He can be found at Epilepsy.com as well and has a newsletter that is worth reading. The logic of amino acids and how they work is explained well. They are not too positive on the use of Taurine however. The logic is there but not the " proof " from the current studies. The web has enough Taurine info to keep you reading for years. The Life Extension protocol has these suggestions--other than the ones you are already taking: 1) To help improve circulation, additional vitamin B3 a dose of 50 mg daily may be taken. 2) Amino Acids taken on an empty stomach nay help some people: taurine, 1-4 grams daily (begin at lower end); glycine, 600 my 1-3 times daily; alanine, 600mg 1-3 times daily. 3) For a more relaxed state, and to counteract the effects of certain anti epileptic drugs, calcium at a dose of 150mg a day (maybe increased to 3 grams if well-tolerated). 4) Vitamin D for those not getting enough sunlight in a dose of 400 mg per day. 5) Manganese, to aid in sugar metabolism, 10-30 mg a day. 6) Selenium, for gluathione peroxidase deficiency, 1-100 mcg a day. 7) Zinc, to protect brain cells , especially in children, 25-80 mg a day in the form of zinc gluconate lozenges. 8) Several herbs have beneficial effects on seizures control. These include Coleus forshkohii, hyssop, black cohosh, blue cohosh, Lelia, and Saiko-Keishi-To. Follow instructions of formulary for usage. Obviously, all of the above are for adults and adult dosages. I have been taking all most all of the above for years. I have read numerous--really--studies and sources that have stated that manganese and selenium are important for people with seizures. Especially manganese. I do not take herbs because they just don't work for me. The taurine drops mentioned above come in a serving size of 50 mg for 1 dropper--kid friendly--tastes great. The literature on taurine and seizures is mixed. Your neurologist will probably smirk when you mention it. However, this is the question that I ask them: If my amino acid profile tests have shown that I am out of the range--below--the normal range for Taurine and I have a seizure profile and Taurine is one of the major inhibitory factors in a properly functioning brain, does it not make perfect logic and sense to make sure that I have enough of this nutrient in my blood stream? They have difficulty countering that with the need for more studies. My thought here is that to make sure that my program does not hurt me first and that it supports me in some basic, logical manner. I'm affraid the studies and the " scientific proof " will have to wait for another generation. I live now, not in the future. I have been taking DHEA for 23 years and I am still looking for the negative effects. Thank you listening to my morning trirade. Oh yes, one phenomenon that I would like to mention about taking large doses of Taurine for me is that it does not work with my meds. It increases the side effects of my medication--Trileptal. However, I noticed this with all the meds I took before as well. I take this as a positive event however. It tells me that if I ever want to use all nature approaches that they will probably work, possibly producing side effects as well? You might want to consider an hair anaylisis to discover if he has been exposed to any high levels of toxins. They don't cost that much and you do not need a doctors permission to do them. The one I use is: Graceful Earth, inc. 838 Kealahou Street Honolulu, Hi 96825 Phone: (808) 394-2832 Toll Free: (877) 697-7300 The report you receive from them is very user friendly. It is very complete. I had a long conversation with them and they were friendly and informative and patient. www. gracefulearth.com is their site. Have a great weekend. Good luck treating your son. -- Re: [ ] kids seizures > > our daughter had her 1st seizure christmas morning, we woke up to this. In > the begining they all came in the morning before we were up. my wife would > hear the noise and we would find her in the seizure already. Later they > became more frequent and during all times of the day. The worse one was a > seizure which the paramedics arrived at our house as usual but this time > they gave her a rectal diastat. The problem was her dose was only allowed to > be a max of 2.5. When we arrived at the hospital the nurse in the er asked > and they told her they gave her 2.0. ten minutes later they said she was > in the stage after the seizure that they usually sleep but we knew she did > not look right. My wife tried to open her mouth only to find she was bitting > her tongue. When asked again the paramedics said the dose was 2.5, ten > minutes later they said 3.5 then even later they said 4.5. Our daughter > was showing no signs of coming out and her breathing was slowing. We were > asked to leave the room. > A breathing tube was inserted, now she was not breathing on her own. At > our request, many times, she was flown to Philladelphia Childrens Hospital. > Ten hours, many tests and many meds later she started to come out and > breathe on her own. All this and no answers. > Our daughter is 20 months old. We are starting to log her intake and times > to see if there is a link. > Thank you for your reply and we pray the very best for you. > > Jennie <mykidshisgift> wrote: > How old is your daughter? Almost seems like the seizures are adrenilan(sp) > triggered?? Has she had mri to check her brain? Have they told you why they > think she is having them? Maybe start logging food/drink intake ie. sugars, > etc. Try to see if there is some connection to the hyper/excited affects! > Seizures cause extreme fatigue! Sorry I cant help much! We are finding that > our sons seizures are improving with better gastrointestinal improvement. > The gi and nuero are interlinked! ! Im sorry, but maybe you should look for > another nuerologist! I dont think med pushers well ever really help with the > cause/healing. They just tend to the easy way out and just bandage(medicate > easily)! We are very blessed to have had a nuero who does not push meds/very > understanding and willing to work with parents gut feelings. He even > recommended a natural doc to us when we told him we was interested in one. > Jennie<>< > > joeandjaynee <joeandjaynee> wrote: my daughter had many > seizures in the last two years . so lots of > different meds for her.keppra was working best but now she is taking > small seizures throw out the day.she just stops everything and stares > and it almost seems like she is going to fall asleep eye get heavy > ,sometimes it seems when she get excited she does it.doctor add new meds > called zonisamide to keppra . i dont feel like she is getting that much > better some days good some not ,plus keppra makes her so cranky .maybe > need to see new doctor .he seems good but easy to push meds on us .we > are new to this behavior of the seizures.please help thank you jaynee > > ____________ _________ _________ _________ _________ __ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2007 Report Share Posted January 8, 2007 Hi! You said your daughter is 20mths and has been having seizures for a couple of years now? I ask if Im understanding this write due to I was wondering if she has been getting vaccinated along the way also!!? You said they have not been able to give you any answers (this is typical when vac caused)! You mentioned many tests, but not if she has had an mri. I am curious on the mri due to checking and ruling out brain obstruction issues. If this has been done and still no answers, then you need to consider no more vac's. I dont know, maybe she hasnt recieved any, but I can tell you our son's seizures started after his first mmr vac and I am confident this is the start of his seizure issues. I am so sorry your daughter and your family had to experience such a horrible seizure that requiered breathing for her. Our son also had 2 grands in the beginning that restricted his breathing also(so frightening). He turned blue and thank GOD he recovered, he only required oxygen, no tube. We now have oxygen tank just incase. Our son's seizures typically triggered while he is was sleeping!! Our son has improved so much with natural supplementing. I pray that your little one improves also!! Jennie<>< my daughter had many seizures in the last two years . so lots of > different meds for her.keppra was working best but now she is taking > small seizures throw out the day.she just stops everything and stares > and it almost seems like she is going to fall asleep eye get heavy > ,sometimes it seems when she get excited she does it.doctor add new meds > called zonisamide to keppra . i dont feel like she is getting that much > better some days good some not ,plus keppra makes her so cranky .maybe > need to see new doctor .he seems good but easy to push meds on us .we > are new to this behavior of the seizures.please help thank you jaynee > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2007 Report Share Posted January 8, 2007 Sorry to butt in but where do you order the Saiko-keishi-to from?? I am in the UK & Emerson won't sell it to me without a referral from an " expert " . Here in the UK we can buy herbs, etc without referral. I would love to try this product for my son, we are not on any meds. Thanks in advance. Re: [ ] kids seizures > > > > our daughter had her 1st seizure christmas morning, we woke up to this. In > > the begining they all came in the morning before we were up. my wife would > > hear the noise and we would find her in the seizure already. Later they > > became more frequent and during all times of the day. The worse one was a > > seizure which the paramedics arrived at our house as usual but this time > > they gave her a rectal diastat. The problem was her dose was only allowed to > > be a max of 2.5. When we arrived at the hospital the nurse in the er asked > > and they told her they gave her 2.0. ten minutes later they said she was > > in the stage after the seizure that they usually sleep but we knew she did > > not look right. My wife tried to open her mouth only to find she was bitting > > her tongue. When asked again the paramedics said the dose was 2.5, ten > > minutes later they said 3.5 then even later they said 4.5. Our daughter > > was showing no signs of coming out and her breathing was slowing. We were > > asked to leave the room. > > A breathing tube was inserted, now she was not breathing on her own. At > > our request, many times, she was flown to Philladelphia Childrens Hospital. > > Ten hours, many tests and many meds later she started to come out and > > breathe on her own. All this and no answers. > > Our daughter is 20 months old. We are starting to log her intake and times > > to see if there is a link. > > Thank you for your reply and we pray the very best for you. > > > > Jennie <mykidshisgift> wrote: > > How old is your daughter? Almost seems like the seizures are adrenilan(sp) > > triggered?? Has she had mri to check her brain? Have they told you why they > > think she is having them? Maybe start logging food/drink intake ie. sugars, > > etc. Try to see if there is some connection to the hyper/excited affects! > > Seizures cause extreme fatigue! Sorry I cant help much! We are finding that > > our sons seizures are improving with better gastrointestinal improvement. > > The gi and nuero are interlinked! ! Im sorry, but maybe you should look for > > another nuerologist! I dont think med pushers well ever really help with the > > cause/healing. They just tend to the easy way out and just bandage(medicate > > easily)! We are very blessed to have had a nuero who does not push meds/very > > understanding and willing to work with parents gut feelings. He even > > recommended a natural doc to us when we told him we was interested in one. > > Jennie<>< > > > > joeandjaynee <joeandjaynee> wrote: my daughter had many > > seizures in the last two years . so lots of > > different meds for her.keppra was working best but now she is taking > > small seizures throw out the day.she just stops everything and stares > > and it almost seems like she is going to fall asleep eye get heavy > > ,sometimes it seems when she get excited she does it.doctor add new meds > > called zonisamide to keppra . i dont feel like she is getting that much > > better some days good some not ,plus keppra makes her so cranky .maybe > > need to see new doctor .he seems good but easy to push meds on us .we > > are new to this behavior of the seizures.please help thank you jaynee > > > > ____________ _________ _________ _________ _________ __ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2007 Report Share Posted January 8, 2007 Hi , I'm not sure it really helps, but it tastes nice...here's a place you can get free shipping if you buy 4 of them: http://www.nutritionsurplus.com/index.cfm/FuseAction/Shopping.ProductDetails/pro\ ductid/21058/Cinnamon%20Formula%20(Saiko-Keishi-to)%20320%20mg%20180%20tabs.html Hope this helps, Helena On 1/8/07, nailsmith <NAILSMITH@...> wrote: > > Sorry to butt in but where do you order the Saiko-keishi-to from?? > I am in the UK & Emerson won't sell it to me without a referral from > an " expert " . Here in the UK we can buy herbs, etc without referral. > I would love to try this product for my son, we are not on any meds. > Thanks in advance. > > Re: [ ] kids seizures > > > > > > our daughter had her 1st seizure christmas morning, we woke up to > this. > In > > > the begining they all came in the morning before we were up. my wife > would > > > hear the noise and we would find her in the seizure already. Later > they > > > became more frequent and during all times of the day. The worse one > was > a > > > seizure which the paramedics arrived at our house as usual but this > time > > > they gave her a rectal diastat. The problem was her dose was only > allowed to > > > be a max of 2.5. When we arrived at the hospital the nurse in the er > asked > > > and they told her they gave her 2.0. ten minutes later they said she > was > > > in the stage after the seizure that they usually sleep but we knew she > did > > > not look right. My wife tried to open her mouth only to find she was > bitting > > > her tongue. When asked again the paramedics said the dose was 2.5, ten > > > minutes later they said 3.5 then even later they said 4.5. Our > daughter > > > was showing no signs of coming out and her breathing was slowing. We > were > > > asked to leave the room. > > > A breathing tube was inserted, now she was not breathing on her own. > At > > > our request, many times, she was flown to Philladelphia Childrens > Hospital. > > > Ten hours, many tests and many meds later she started to come out and > > > breathe on her own. All this and no answers. > > > Our daughter is 20 months old. We are starting to log her intake and > times > > > to see if there is a link. > > > Thank you for your reply and we pray the very best for you. > > > > > > Jennie <mykidshisgift> wrote: > > > How old is your daughter? Almost seems like the seizures are > adrenilan(sp) > > > triggered?? Has she had mri to check her brain? Have they told you why > they > > > think she is having them? Maybe start logging food/drink intake ie. > sugars, > > > etc. Try to see if there is some connection to the hyper/excited > affects! > > > Seizures cause extreme fatigue! Sorry I cant help much! We are finding > that > > > our sons seizures are improving with better gastrointestinal > improvement. > > > The gi and nuero are interlinked! ! Im sorry, but maybe you should > look > for > > > another nuerologist! I dont think med pushers well ever really help > with > the > > > cause/healing. They just tend to the easy way out and just > bandage(medicate > > > easily)! We are very blessed to have had a nuero who does not push > meds/very > > > understanding and willing to work with parents gut feelings. He even > > > recommended a natural doc to us when we told him we was interested in > one. > > > Jennie<>< > > > > > > joeandjaynee <joeandjaynee> wrote: my daughter had many > > > seizures in the last two years . so lots of > > > different meds for her.keppra was working best but now she is taking > > > small seizures throw out the day.she just stops everything and stares > > > and it almost seems like she is going to fall asleep eye get heavy > > > ,sometimes it seems when she get excited she does it.doctor add new > meds > > > called zonisamide to keppra . i dont feel like she is getting that > much > > > better some days good some not ,plus keppra makes her so cranky .maybe > > > need to see new doctor .he seems good but easy to push meds on us .we > > > are new to this behavior of the seizures.please help thank you jaynee > > > > > > ____________ _________ _________ _________ _________ __ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2007 Report Share Posted January 8, 2007 Thank you Helen, I've just been on the site even though it is 2am here! It doesn't look like they ship overseas but I have emailed them, well begged them LOL! so we'll see if they can send. I really want to try this, its so frustrating. Best wishes Re: [ ] kids seizures > > > > > > > > our daughter had her 1st seizure christmas morning, we woke up to > > this. > > In > > > > the begining they all came in the morning before we were up. my wife > > would > > > > hear the noise and we would find her in the seizure already. Later > > they > > > > became more frequent and during all times of the day. The worse one > > was > > a > > > > seizure which the paramedics arrived at our house as usual but this > > time > > > > they gave her a rectal diastat. The problem was her dose was only > > allowed to > > > > be a max of 2.5. When we arrived at the hospital the nurse in the er > > asked > > > > and they told her they gave her 2.0. ten minutes later they said she > > was > > > > in the stage after the seizure that they usually sleep but we knew she > > did > > > > not look right. My wife tried to open her mouth only to find she was > > bitting > > > > her tongue. When asked again the paramedics said the dose was 2.5, ten > > > > minutes later they said 3.5 then even later they said 4.5. Our > > daughter > > > > was showing no signs of coming out and her breathing was slowing. We > > were > > > > asked to leave the room. > > > > A breathing tube was inserted, now she was not breathing on her own. > > At > > > > our request, many times, she was flown to Philladelphia Childrens > > Hospital. > > > > Ten hours, many tests and many meds later she started to come out and > > > > breathe on her own. All this and no answers. > > > > Our daughter is 20 months old. We are starting to log her intake and > > times > > > > to see if there is a link. > > > > Thank you for your reply and we pray the very best for you. > > > > > > > > Jennie <mykidshisgift> wrote: > > > > How old is your daughter? Almost seems like the seizures are > > adrenilan(sp) > > > > triggered?? Has she had mri to check her brain? Have they told you why > > they > > > > think she is having them? Maybe start logging food/drink intake ie. > > sugars, > > > > etc. Try to see if there is some connection to the hyper/excited > > affects! > > > > Seizures cause extreme fatigue! Sorry I cant help much! We are finding > > that > > > > our sons seizures are improving with better gastrointestinal > > improvement. > > > > The gi and nuero are interlinked! ! Im sorry, but maybe you should > > look > > for > > > > another nuerologist! I dont think med pushers well ever really help > > with > > the > > > > cause/healing. They just tend to the easy way out and just > > bandage(medicate > > > > easily)! We are very blessed to have had a nuero who does not push > > meds/very > > > > understanding and willing to work with parents gut feelings. He even > > > > recommended a natural doc to us when we told him we was interested in > > one. > > > > Jennie<>< > > > > > > > > joeandjaynee <joeandjaynee> wrote: my daughter had many > > > > seizures in the last two years . so lots of > > > > different meds for her.keppra was working best but now she is taking > > > > small seizures throw out the day.she just stops everything and stares > > > > and it almost seems like she is going to fall asleep eye get heavy > > > > ,sometimes it seems when she get excited she does it.doctor add new > > meds > > > > called zonisamide to keppra . i dont feel like she is getting that > > much > > > > better some days good some not ,plus keppra makes her so cranky ..maybe > > > > need to see new doctor .he seems good but easy to push meds on us ..we > > > > are new to this behavior of the seizures.please help thank you jaynee > > > > > > > > ____________ _________ _________ _________ _________ __ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2007 Report Share Posted January 8, 2007 Hi , Seems that they would ship overseas: http://www.nutritionsurplus.com/index.cfm/fuseaction/Content.showcontent/content\ id/296.html I hope for the very best for you and your son. Just curious, are you giving him anything now (since you're not doing drugs). Please let us know how it works out for you. Hugs, Helena On 1/8/07, nailsmith <NAILSMITH@...> wrote: > > Thank you Helen, I've just been on the site even though it is 2am here! > It doesn't look like they ship overseas but I have emailed them, well > begged them LOL! so we'll see if they can send. > I really want to try this, its so frustrating. > Best wishes > > Re: [ ] kids seizures > > > > > > > > > > our daughter had her 1st seizure christmas morning, we woke up to > > > this. > > > In > > > > > the begining they all came in the morning before we were up. my > wife > > > would > > > > > hear the noise and we would find her in the seizure already. Later > > > they > > > > > became more frequent and during all times of the day. The worse > one > > > was > > > a > > > > > seizure which the paramedics arrived at our house as usual but > this > > > time > > > > > they gave her a rectal diastat. The problem was her dose was only > > > allowed to > > > > > be a max of 2.5. When we arrived at the hospital the nurse in the > er > > > asked > > > > > and they told her they gave her 2.0. ten minutes later they said > she > > > was > > > > > in the stage after the seizure that they usually sleep but we knew > she > > > did > > > > > not look right. My wife tried to open her mouth only to find she > was > > > bitting > > > > > her tongue. When asked again the paramedics said the dose was 2.5, > ten > > > > > minutes later they said 3.5 then even later they said 4.5. Our > > > daughter > > > > > was showing no signs of coming out and her breathing was slowing. > We > > > were > > > > > asked to leave the room. > > > > > A breathing tube was inserted, now she was not breathing on her > own. > > > At > > > > > our request, many times, she was flown to Philladelphia Childrens > > > Hospital. > > > > > Ten hours, many tests and many meds later she started to come out > and > > > > > breathe on her own. All this and no answers. > > > > > Our daughter is 20 months old. We are starting to log her intake > and > > > times > > > > > to see if there is a link. > > > > > Thank you for your reply and we pray the very best for you. > > > > > > > > > > Jennie <mykidshisgift> wrote: > > > > > How old is your daughter? Almost seems like the seizures are > > > adrenilan(sp) > > > > > triggered?? Has she had mri to check her brain? Have they told you > why > > > they > > > > > think she is having them? Maybe start logging food/drink intake > ie. > > > sugars, > > > > > etc. Try to see if there is some connection to the hyper/excited > > > affects! > > > > > Seizures cause extreme fatigue! Sorry I cant help much! We are > finding > > > that > > > > > our sons seizures are improving with better gastrointestinal > > > improvement. > > > > > The gi and nuero are interlinked! ! Im sorry, but maybe you should > > > look > > > for > > > > > another nuerologist! I dont think med pushers well ever really > help > > > with > > > the > > > > > cause/healing. They just tend to the easy way out and just > > > bandage(medicate > > > > > easily)! We are very blessed to have had a nuero who does not push > > > meds/very > > > > > understanding and willing to work with parents gut feelings. He > even > > > > > recommended a natural doc to us when we told him we was interested > in > > > one. > > > > > Jennie<>< > > > > > > > > > > joeandjaynee <joeandjaynee> wrote: my daughter had many > > > > > seizures in the last two years . so lots of > > > > > different meds for her.keppra was working best but now she is > taking > > > > > small seizures throw out the day.she just stops everything and > stares > > > > > and it almost seems like she is going to fall asleep eye get heavy > > > > > ,sometimes it seems when she get excited she does it.doctor add > new > > > meds > > > > > called zonisamide to keppra . i dont feel like she is getting that > > > much > > > > > better some days good some not ,plus keppra makes her so cranky > .maybe > > > > > need to see new doctor .he seems good but easy to push meds on us > .we > > > > > are new to this behavior of the seizures.please help thank you > jaynee > > > > > > > > > > ____________ _________ _________ _________ _________ __ > > > > > Quote Link to comment Share on other sites More sharing options...
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