Biofeedback, Nutrition
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RobinN
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No Chaz I have no experience with this. It sounds interesting though.
Do you have a link that might explain it more?
Hello Robin, similar only with music (trying to locate decent info in English, will share) Gets to chose his own tunes and enjoys it. Today I said I hoped the therapy will help long term. He said, Mum its already helping not sure how but I feel it. Probed a little further and he summarized how he felt it has helped, after 9 sessions only. He is gaining clarity of mind, memory improving, language and mathematical skills improving, reaction capability increased, can almost think as he did before the meds and is still on meds (he holding back on med increase due to breakthroughs). How’s that for a miracle. I want to point out, he is a sensitive dude and may fall under the category in which Neurofeedback kicks in quickly and if so hallelujah but we not planning to stop for long time yet. There are changes in seizure activity, in fact an increase and they are different, but he is 100% adamant that they are due to emotional stress, so hopefully Neurofeedback and talk therapy will help him in time there too.
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RobinN
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He sounds a lot like Rebecca. Highly sensitive and has reactive hypoglycemia to certain foods. Potatoes and banana have been eliminated on their own. When mixed with protein in smaller quantities they don't seem to pose a problem.
She also saw quick results. She would be so excited that she was able to write pages of notes at school. When in the past the verbal processing was very strained. They worked with the therapy to help with her sleep patterns too.
We had already begun on the nutritional changes when we began the NFB therapy. She also was taking Omega 3 and magnesium at the time. I think I added D3 in later, but have learned how important it is. DogtorJ just reminded me this fact again.
I bet you might be able to decrease the meds over time. Rebecca was still having an occasional seizure even after we stopped the NFB therapy, but they had reduced dramatically, that we were able to begin throwing efforts into the nutrition / sugar balance , vitamins, and hormonal balance. I believe the NFB was the thread that helped to raise her seizure threshold.
Keep up the good work. It is always disappointing when you see an increase, but make sure that his body is receiving the nutrients it needs to heal and stabilize.
She also saw quick results. She would be so excited that she was able to write pages of notes at school. When in the past the verbal processing was very strained. They worked with the therapy to help with her sleep patterns too.
We had already begun on the nutritional changes when we began the NFB therapy. She also was taking Omega 3 and magnesium at the time. I think I added D3 in later, but have learned how important it is. DogtorJ just reminded me this fact again.
I bet you might be able to decrease the meds over time. Rebecca was still having an occasional seizure even after we stopped the NFB therapy, but they had reduced dramatically, that we were able to begin throwing efforts into the nutrition / sugar balance , vitamins, and hormonal balance. I believe the NFB was the thread that helped to raise her seizure threshold.
Keep up the good work. It is always disappointing when you see an increase, but make sure that his body is receiving the nutrients it needs to heal and stabilize.
Eats good, fish, fruit and veg, meat 75% diet organic (been pushing or should say buying happily), also on Omega 3 (inriched with B12 and folic acid), D3 and Vit E. Should I introduce more B or maybe go multi Vit? Bananas, bought him mini organic ones today, what is truly wrong with an organic banana @ Potatoes? Gosh, I think I am missing some serious info. I told him today, get off the milk, but he a real milk lover…oddly.
There is also hope for sleep...so happy you bring up this point...
There is also hope for sleep...so happy you bring up this point...
RobinN
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We saw seizures after potatoes. Once we realized there was a sugar imbalance with Rebecca it made sense so the bananas (being high on the Glycemic Index and not recommended if you are hypoglycemic) were removed too.
Rebecca's sinus, constant cough, and ezcema all went away after eliminating cow dairy. She drinks GF rice milk and coconut yogurt, goat cheeses (lower in casein) .
I personally don't like multi vitamins. I don't think you can target the individual needs when you go with a one size fits all. You can have his vitamins and minerals tested, but there is a fact that what is in the blood stream, isn't necessarily what is getting past the blood brain barrier. About the B Vit. Rebecca was taking a complex and I researched that B's need each other in order to be effective. You might look more into that.
Sounds like you are doing a lot that is positive for healing purposes. It isn't a quick fix. It took years for Rebecca to slowly improve. I appreciated my journal (calendar) at those times that we had a set back.
Rebecca's sinus, constant cough, and ezcema all went away after eliminating cow dairy. She drinks GF rice milk and coconut yogurt, goat cheeses (lower in casein) .
I personally don't like multi vitamins. I don't think you can target the individual needs when you go with a one size fits all. You can have his vitamins and minerals tested, but there is a fact that what is in the blood stream, isn't necessarily what is getting past the blood brain barrier. About the B Vit. Rebecca was taking a complex and I researched that B's need each other in order to be effective. You might look more into that.
Sounds like you are doing a lot that is positive for healing purposes. It isn't a quick fix. It took years for Rebecca to slowly improve. I appreciated my journal (calendar) at those times that we had a set back.
thanks Robin, full blood analysis on the cards...need to give him a break from it all but just 4 now. You bring up great point, how much of it is getting to the brain, that gives me another outlook. hmm. Can see his face as I bring in the B complex, but I will say, he is open so yep, we going to head that direction..thank u..I so appreciate the wonderful what I feel is experienced guidance and I know you are Mother not a Scientist...alternatives give great hope …
Ruth
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I found several links about music therapy. This is one:
http://www.expressivetherapy.org/bioart.html
He wrote more about it.
Thanks Robin. I have been looking into B complex, thanks again. Going to start taking D now too myself.
Could I ask you to summarize the supplements you have Rebecca taking currently?
Josh is on Omega 3 1500mg/day (contains B12 and Folic), Vit E 200IU, Vit D 1000IU but going to up the D3. So far, he has not has a seizure in spring/summer.
Want to introduce B Complex, but wondering if I miss anything? That I should be researching...
Should I make sure he gets blood check before I introduce B Complex and up the D? Waiting to go see an Eptoligist so was thinking maybe I should wait…but maybe not.
Appreciate your thoughts on this. More than I can say.
Could I ask you to summarize the supplements you have Rebecca taking currently?
Josh is on Omega 3 1500mg/day (contains B12 and Folic), Vit E 200IU, Vit D 1000IU but going to up the D3. So far, he has not has a seizure in spring/summer.
Want to introduce B Complex, but wondering if I miss anything? That I should be researching...
Should I make sure he gets blood check before I introduce B Complex and up the D? Waiting to go see an Eptoligist so was thinking maybe I should wait…but maybe not.
Appreciate your thoughts on this. More than I can say.
Hello Ruth,
Thank u again…
Josh is 7 days seizure free, thank God.
He is making appointment with his Doc to have full blood check, reminded him today. I am the one introducing the supplements so as you say, need to be 100% sure, thank u..I am going ahead and upping his D from 1000IU to 5000IU…then for now, we stay with B Complex, Omega 3, Vit E 200IU and D 5000IU…and will see what his blood tests show..He eats mega healthy and we discuss and review diet non stop...but he is not ready for "nutrition diet only". But someday maybe
He just had a 300mg increase in his valporic (now at 1300mg), but that is not what got him back on track as he just started that yesterday, need few days to see if the additional meds hits him with a bang or not. I pray not. He had so many breakthrough seizures in last few months, and his neurologist recommended the increase so he agreed to the smallest increase. You want to shout no, no more meds but we want him safe to. Its heart wrenching. We in process of switching him from neurologist to eptologist.
NFB therapy seems to be doing wonders for him, clarity of mind and memory and so much more...He also had a 2hour session with his therapist today (great young man his therapist is) to take a better look at how to help Josh deal with emotional stress and some.
My Son stays so positive throughout all….in itself is a miracle.
Thank u again…
Josh is 7 days seizure free, thank God.
He is making appointment with his Doc to have full blood check, reminded him today. I am the one introducing the supplements so as you say, need to be 100% sure, thank u..I am going ahead and upping his D from 1000IU to 5000IU…then for now, we stay with B Complex, Omega 3, Vit E 200IU and D 5000IU…and will see what his blood tests show..He eats mega healthy and we discuss and review diet non stop...but he is not ready for "nutrition diet only". But someday maybe
He just had a 300mg increase in his valporic (now at 1300mg), but that is not what got him back on track as he just started that yesterday, need few days to see if the additional meds hits him with a bang or not. I pray not. He had so many breakthrough seizures in last few months, and his neurologist recommended the increase so he agreed to the smallest increase. You want to shout no, no more meds but we want him safe to. Its heart wrenching. We in process of switching him from neurologist to eptologist.
NFB therapy seems to be doing wonders for him, clarity of mind and memory and so much more...He also had a 2hour session with his therapist today (great young man his therapist is) to take a better look at how to help Josh deal with emotional stress and some.
My Son stays so positive throughout all….in itself is a miracle.
Ruth
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Chaz, I have some links for you:
http://www.coping-with-epilepsy.com/forums/f23/vitamins-seizures-1825/inex2.html
Scroll down in Coping With Epilepsy. It is there.
I also recommend that you follow Rebecca's Blog.
Did you know that you can add music therapy to NFD? It will relax Josh.
Another link from a very reliable source:
http://www.epilepsy.com/epilepsy/treatment_Ketogenic-Diet
Look on the left hand side and you will find all sorts of things that might help Josh.
I am glad that he has been 7 days seizure free. That is good. I would stick with what you are doing and not change anything. Maybe he will go another 7 days seizure free.
Being positive is very important. That is how I have gotten through my challenges with my health.
Some of the herbs in the first article are medications. So be sure and look them up and ask your doctor about them.
http://www.coping-with-epilepsy.com/forums/f23/vitamins-seizures-1825/inex2.html
Scroll down in Coping With Epilepsy. It is there.
I also recommend that you follow Rebecca's Blog.
Did you know that you can add music therapy to NFD? It will relax Josh.
Another link from a very reliable source:
http://www.epilepsy.com/epilepsy/treatment_Ketogenic-Diet
Look on the left hand side and you will find all sorts of things that might help Josh.
I am glad that he has been 7 days seizure free. That is good. I would stick with what you are doing and not change anything. Maybe he will go another 7 days seizure free.
Being positive is very important. That is how I have gotten through my challenges with my health.
Some of the herbs in the first article are medications. So be sure and look them up and ask your doctor about them.
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RobinN
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A good explanation of hypoglycemia and seizures.
http://braindiseases.wordpress.com/2008/07/26/seizures-due-to-hypoglycemia-low-blood-sugar/
http://braindiseases.wordpress.com/2008/07/26/seizures-due-to-hypoglycemia-low-blood-sugar/
Ruth
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Hi Robin, I went to the website that you gave me. I kept putting the link in wrong.
I will try this and maybe you can get it in:
http://www.isletsofhope.com/diabetes/complications/main_1.html
I finally got it right. Can you please put it in? That is the information that they need
Thank you Robin
Ruth
I will try this and maybe you can get it in:
http://www.isletsofhope.com/diabetes/complications/main_1.html
I finally got it right. Can you please put it in? That is the information that they need
Thank you Robin
Ruth
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Just a little update, tomorrow morning it will be 2 weeks without a T/C for my Boy..And they were coming thick. Good riddance.
Said he had another great NFB -therapy and talk therapy session today, he sounded so positive. That’s my boy…
He was out at weekend and they ended up in real stressful situation. He was filling me in and he said Mum, I could feel the NFB-thearpy is helping me; he managed to keep his stress levels down, have control and no seizure. Not even an aura...
Because of the many breakthroughs, he has had a med increase but it seems to be having minimal to no additional side effects, he says a bit heavier on the brain (fog) but he sure is not as depressed as he was when 1st starting…we will be working to get this reduced ASAP..
He on the B complex now, could this be why he is so positive and happy, just maybe it is. I keep telling him to make appointment to check his blood, not a young fella so he has to do something’s himself but I will keep reminding him.
All in all, we are back on track and booking some real progress, every day without a seizure is a great day!! For today we have...and we can pray for tomorrow.
Said he had another great NFB -therapy and talk therapy session today, he sounded so positive. That’s my boy…
He was out at weekend and they ended up in real stressful situation. He was filling me in and he said Mum, I could feel the NFB-thearpy is helping me; he managed to keep his stress levels down, have control and no seizure. Not even an aura...
Because of the many breakthroughs, he has had a med increase but it seems to be having minimal to no additional side effects, he says a bit heavier on the brain (fog) but he sure is not as depressed as he was when 1st starting…we will be working to get this reduced ASAP..
He on the B complex now, could this be why he is so positive and happy, just maybe it is. I keep telling him to make appointment to check his blood, not a young fella so he has to do something’s himself but I will keep reminding him.
All in all, we are back on track and booking some real progress, every day without a seizure is a great day!! For today we have...and we can pray for tomorrow.