Indeed. That is great to hear that there is progress.My girl is having approx 1 seizure a month, it's way better than few times a week.
Small steps...
Still think generally that wholesome healthy foods go a long way to general positive wellbeing.
Dietary changes and seizure control
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KarenB
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I will take note if my girl has the desire to chomp on salty stuff... Although she has generally liked savoury versus sweet stuff, even before the Taurine began.
The liquefy Taurine I can syringe, but I found the mixture very very sweet( the concoction was made by the pharmacist) I tried it myself it was like having a big sugar hit..didn't like that..was too sweet.....Now using the healthwise brand called L-Taurine in powdered grade, it's 100% pure pharmaceutical grade amino acid powder. I give her dose sprinkled onto her morning breaky cereal.
ATM
My girl is having approx 1 seizure a month, it's way better than few times a week.
Small steps...
Still think generally that wholesome healthy foods go a long way to general positive wellbeing.
We use either the powdered version of supplements (which are usually carb free or nearly) or the capsules. You're right, the liquid/syrup forms are full of sugar which can spike blood sugar, and potentially trigger seizures.
Glad ot hear your daughter has a marked decrease in seizures. Here's hoping that you'll find that last piece of the puzzle to seizure freedom!
KarenB
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So, Jon came down with a fever and some sort of URI 2 days ago (first time he's been sick like that in about 2 years or more), so we trekked down to the pediatrician yesterday cause they wanted to do a strep test and check his ears. (it was negative, just a virus, I guess)
Anyway, we got this nice older doc, who had actually read all the positive research on probiotics and cognition levels, and helpful impact on mood and anxiety levels (in contrast to the nurse practitioner we saw at the autism clinic in the same practice last week who said, "Well, there's no research that proves that probiotics are helpful for autistic kids"). So, anyway, this doc gave the go-ahead for daily doses of probiotics to help both Jon's IBD as well as helping him stay calm and focused (which was the effect his teacher reported, over and over). He said there isn't really a risk of over-proliferating the gut with lactobacillus, since gut bacteria are so competitive, but he did say that NOT using probiotics brings the risk of the gut being over-proliferated with toxin producing bacteria like Clostridium histolyticum that's commonly found in guts of autistic kids and may be the culprit in the diarrhea issues that Jon has had all his life (as well as many other autistic kids)
My husband said I need to email all the research to the nurse-practitioner.
Anyway, we got this nice older doc, who had actually read all the positive research on probiotics and cognition levels, and helpful impact on mood and anxiety levels (in contrast to the nurse practitioner we saw at the autism clinic in the same practice last week who said, "Well, there's no research that proves that probiotics are helpful for autistic kids"). So, anyway, this doc gave the go-ahead for daily doses of probiotics to help both Jon's IBD as well as helping him stay calm and focused (which was the effect his teacher reported, over and over). He said there isn't really a risk of over-proliferating the gut with lactobacillus, since gut bacteria are so competitive, but he did say that NOT using probiotics brings the risk of the gut being over-proliferated with toxin producing bacteria like Clostridium histolyticum that's commonly found in guts of autistic kids and may be the culprit in the diarrhea issues that Jon has had all his life (as well as many other autistic kids)
My husband said I need to email all the research to the nurse-practitioner.
I want to let people know about what is happening here to me. Although this does not seem like the most appropriate place to post this, neither does any other place, so here goes.
Basically after I got home from the VEEG on July 20 and discovered that the epileptologist was no longer in the data base of the medical facility where she has been my physician, I engaged another doctor, a naturopath, to help titrate me off of the zonisamide. This seemed appropriate given the EEG reading at the Regional Epilepsy Center. The naturopath immediately did a complete blood panel and saw that I have a severe B12 deficiency accompanied by an inability to absorb protein. I have not yet had the time to go over the medical record for the last five years, but my bet is that nobody has done that simple minded, no brainer test during the whole time I carried the diagnosis of epilepsy. And I am of course disgusted with the medical world as I know it.
The B12 deficiency resulted in dementia, which showed up here,there and everywhere, problems with vision, intense depression,exhaustion, psychosis, neuropathy, problems with balance to the point that I use a cane. There is more but I forget what it is. During the time I was reading Perlmutter and taking coconut oil, I felt worse and worse, and yet I strongly suspect that things would have been far worse if I had not been following Perlmutter's regime and consuming that coconut oil. [Among other things, my cholesterol readings are a dream come true.] I am mentioning this particularly because I have been following the discussions about diet as if I could take in the information, but even if I am all for the information, and I am, I haven't been in any position to take it in for some time.
I had my first B12 shot on Tuesday. The next day I walked to the store as usual and realized that my legs felt amazingly strong, that I was not weaving around on the sidewalk, and that I was not completely exhausted when I got home. I was thrilled. Since then I continue to know I am in better shape, but now, the next day, I can tell that I have a ways to go. There are 5 more shots and whatever else emerges.
That is the news. I have learned a lot and there is no way I would wish away the last five years. It has changed everything and not necessarily for the worse. I have learned so much -- a lot because of CWE. I love you all.
Basically after I got home from the VEEG on July 20 and discovered that the epileptologist was no longer in the data base of the medical facility where she has been my physician, I engaged another doctor, a naturopath, to help titrate me off of the zonisamide. This seemed appropriate given the EEG reading at the Regional Epilepsy Center. The naturopath immediately did a complete blood panel and saw that I have a severe B12 deficiency accompanied by an inability to absorb protein. I have not yet had the time to go over the medical record for the last five years, but my bet is that nobody has done that simple minded, no brainer test during the whole time I carried the diagnosis of epilepsy. And I am of course disgusted with the medical world as I know it.
The B12 deficiency resulted in dementia, which showed up here,there and everywhere, problems with vision, intense depression,exhaustion, psychosis, neuropathy, problems with balance to the point that I use a cane. There is more but I forget what it is. During the time I was reading Perlmutter and taking coconut oil, I felt worse and worse, and yet I strongly suspect that things would have been far worse if I had not been following Perlmutter's regime and consuming that coconut oil. [Among other things, my cholesterol readings are a dream come true.] I am mentioning this particularly because I have been following the discussions about diet as if I could take in the information, but even if I am all for the information, and I am, I haven't been in any position to take it in for some time.
I had my first B12 shot on Tuesday. The next day I walked to the store as usual and realized that my legs felt amazingly strong, that I was not weaving around on the sidewalk, and that I was not completely exhausted when I got home. I was thrilled. Since then I continue to know I am in better shape, but now, the next day, I can tell that I have a ways to go. There are 5 more shots and whatever else emerges.
That is the news. I have learned a lot and there is no way I would wish away the last five years. It has changed everything and not necessarily for the worse. I have learned so much -- a lot because of CWE. I love you all.
That's awesome Bidwell.
http://www.coping-with-epilepsy.com/forums/f23/amazing-difference-25303/
This was a thread a while back by MMRocks. She had wonderful results from B12 supplementation too. She said the docs called her condition "pernicious anemia". Is that anything like what you have?
http://www.coping-with-epilepsy.com/forums/f23/amazing-difference-25303/
This was a thread a while back by MMRocks. She had wonderful results from B12 supplementation too. She said the docs called her condition "pernicious anemia". Is that anything like what you have?
Do you know how much B12 they are giving you? On what kind of a schedule?
I found some B12 patches that I've been using on a once weekly basis but I really haven't noticed much of a difference. Haven't felt like leaping any tall buildings but then my "normal" state of being is pretty strong and hearty.
It probably is a matter of locating your particular deficiency. I feel a strong response to supplementing magnesium for example. I'm glad you found yours.
I think I will continue to use the B12 patches given that both of my E-meds deplete B12 just as a matter of general health.
I found some B12 patches that I've been using on a once weekly basis but I really haven't noticed much of a difference. Haven't felt like leaping any tall buildings but then my "normal" state of being is pretty strong and hearty.
It probably is a matter of locating your particular deficiency. I feel a strong response to supplementing magnesium for example. I'm glad you found yours.
I think I will continue to use the B12 patches given that both of my E-meds deplete B12 just as a matter of general health.
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Hi Karen,
L-taurine is the amino acid I tried that finally put an end to my partials in 1998. I went to Arizona and saw the neurologist, Dr. Labiner who had done some of the con it. There is powerful research on how this amino acid works regarding the nervous system, seizures and heart that goes back decades. It is well worth checking out, but also check out the few possible negative effects it may have as well. I took tablets; the sugar would just make me sick.
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Blonde Angel
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Karen
don't give up on the usefulness of probiotics . Your Husband is correct in advising you to email information to the nurse who is ignorant and not aware on the importance of how probiotics can manage gut issues and general flora. I am forever, providing information on any reading I've collated and happy to show if the health professionals remain dubious.
Sorry to hear about fever dramas with Jon...what's his white cell count doing? Are they elevated? His immune system is obviously reacting to some bug I'm wondering....
don't give up on the usefulness of probiotics . Your Husband is correct in advising you to email information to the nurse who is ignorant and not aware on the importance of how probiotics can manage gut issues and general flora. I am forever, providing information on any reading I've collated and happy to show if the health professionals remain dubious.
Sorry to hear about fever dramas with Jon...what's his white cell count doing? Are they elevated? His immune system is obviously reacting to some bug I'm wondering....
Blonde Angel
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Glad to read some good things are happening to you Bidwell.
Yippee!!!!
Yippee!!!!
Blonde Angel
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Hello Zoe, regarding the..
L Taurine, there's been some interesting feedback I'm getting who is raving on about its benefits. I see a Dr that specialises in Nutritional Medicine for my Daughter, it's hopefully going to be promising for my situation with my girl.He has also written and lectured on the gut origins with Autism.
Another thing he raves about is the usefulness of iodine for the brain, he believes western diet lacks enough iodine and causes issues for the thyroid.
L Taurine, there's been some interesting feedback I'm getting who is raving on about its benefits. I see a Dr that specialises in Nutritional Medicine for my Daughter, it's hopefully going to be promising for my situation with my girl.He has also written and lectured on the gut origins with Autism.
Another thing he raves about is the usefulness of iodine for the brain, he believes western diet lacks enough iodine and causes issues for the thyroid.
Blonde Angel
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On a general note..
I think people in general need to be aware and take some responsibility of their health. A simple strategy is to improve our gut flora. Eat less processed foods, less sugar and more fibre. All those things actually drive the pattern of our gut bacteria.
Have a good think about allergies..
The fact that kids are getting allergies early on within weeks or months of birth demonstrates that we are vulnerable to the modern environment. Some people might think it trivial, but an "allergy" might be one of our first signs in our life that our modern environment is affecting our immune system.
It's our immune system that's fundamental to all our aspects of health...which involves yes.. The brain, heart, metabolic and cardiovascular health.
Food for thought
I think people in general need to be aware and take some responsibility of their health. A simple strategy is to improve our gut flora. Eat less processed foods, less sugar and more fibre. All those things actually drive the pattern of our gut bacteria.
Have a good think about allergies..
The fact that kids are getting allergies early on within weeks or months of birth demonstrates that we are vulnerable to the modern environment. Some people might think it trivial, but an "allergy" might be one of our first signs in our life that our modern environment is affecting our immune system.
It's our immune system that's fundamental to all our aspects of health...which involves yes.. The brain, heart, metabolic and cardiovascular health.
Food for thought
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Blonde Angel
Hi Angel,
If your doctor has written an published anything on this, please post some links. Sounds like a hopeful situation for your daughter.
I'd just like to share the following two links:
http://www.uniprot.org/uniprot/Q9Y600
and:
http://enzyme.expasy.org/EC/4.1.1.29
http://www.uniprot.org/uniprot/Q9Y600
and:
http://enzyme.expasy.org/EC/4.1.1.29
KarenB
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No idea what his white count is -- he's actually due for his labs this month, but will probably have those drawn next week. Back to doc yesterday, saw some resident who'd been out of med school about 5 minutes, who said Jon's ears looked fine. And that he couldn't possibly have a sinus infection - -he hadn't been sick long enough. I happened to mention that the last time Jon had an illness that followed this course, he ended up in ICU for 4 days with status epilepticus. Doc turned a bit pale and toddled off to fetch his attending. The attending doc took a look and decided there was the "beginnings" of an ear infection "just starting" in his right ear. Hmmph, a bit more than the "beginnings" -- this morning he woke up with blood on his sheets -- his eardrum had ruptured during the night. At any rate, the docs put him on an antibiotic yesterday, and he's feeling much better today. The eardrum should heal up on its own.