Biofeedback, Nutrition
- Thread starter Chaz1
- Start date
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It all started off wrong, she asked my Son what can I do for ya and his logical response was to say cure me of E...she reacted a bit odd to that one, so the welcome was weird.
But, she took note of every seizure (many notes, a good thing) and asked many more questions than his neurologist and she took notes galore.
She sent him for blood tests (check med levels) and I asked to include much more and she did, we get results in 2.5 weeks. Checking the levels of his meds, kidney, liver, thyroid, D levels, glucose, calcium but she would not budge on the magnesium (can’t figure that one out).
She wants to do full review of med effectiveness and said he may want to consider change of med which I know scared the life out of him. So as a result, T/C hit yesterday afternoon was again short one by his previous standards and no tongue bite. Was his 1st seizure in front of extended family and a real eye opener for them, now they know what he has to live/cope with and know 1st hand how to manage a T/C. I could see the immense relief on him when I arrived, got everyone backed off to give him space/peace and take the focus off him. We got the hell outta there as soon as he was recovered and treated him to dinner on way home (he always starving after a T/C) and we had a good laugh together, gotta keep up the spirits.
So, we did not get a warm fuzzy feeling at the new epileptologist but for sure going to give her chance to see where it goes, who knows. And I know we got lots more questions that a 1st session just cannot cover..So we stay hopeful.
But, she took note of every seizure (many notes, a good thing) and asked many more questions than his neurologist and she took notes galore.
She sent him for blood tests (check med levels) and I asked to include much more and she did, we get results in 2.5 weeks. Checking the levels of his meds, kidney, liver, thyroid, D levels, glucose, calcium but she would not budge on the magnesium (can’t figure that one out).
She wants to do full review of med effectiveness and said he may want to consider change of med which I know scared the life out of him. So as a result, T/C hit yesterday afternoon was again short one by his previous standards and no tongue bite. Was his 1st seizure in front of extended family and a real eye opener for them, now they know what he has to live/cope with and know 1st hand how to manage a T/C. I could see the immense relief on him when I arrived, got everyone backed off to give him space/peace and take the focus off him. We got the hell outta there as soon as he was recovered and treated him to dinner on way home (he always starving after a T/C) and we had a good laugh together, gotta keep up the spirits.
So, we did not get a warm fuzzy feeling at the new epileptologist but for sure going to give her chance to see where it goes, who knows. And I know we got lots more questions that a 1st session just cannot cover..So we stay hopeful.
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With the magnesium she may have resisted because that's difficult to measure with a standard blood test (although you could say the same for calcium -- the body always makes sure there's enough calcium in your blood, even if your bones are crumbling away). Maybe with the second visit she will be approachable enough so that you can ask her about her reasons.
Most epileptologists only wield a few tools (namely, medications or surgery), so if there isn't complete seizure control, their first answer is to raise the dosage or try another drug. But I'm sorry she wasn't entirely sympathetic, and that she set off alarm bells...
I hope the tests are helpful one way or another, and that your son can relax and be happy. You too!
Most epileptologists only wield a few tools (namely, medications or surgery), so if there isn't complete seizure control, their first answer is to raise the dosage or try another drug. But I'm sorry she wasn't entirely sympathetic, and that she set off alarm bells...
I hope the tests are helpful one way or another, and that your son can relax and be happy. You too!
You hit nail on the head Nakamova, med and surgery.
We will eagerly wait for the 1st blood results to come in and will start looking further for mineral levels check (private).
We see how it goes in the next visit, at least we in motion and we never going to stop looking for potential options
We will eagerly wait for the 1st blood results to come in and will start looking further for mineral levels check (private).
We see how it goes in the next visit, at least we in motion and we never going to stop looking for potential options
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I think the magnesium dose can vary from person to person. Generally it's wise to check with the doctor first and start with a small dose until you know how it's affecting you. Different forms can be more bio-absorbable than others. I take a 140mg magnesium citrate capsule once or twice a day. I can't tell if it is having a beneficial effect, but it doesn't seem to be having any negative ones, and doesn't bother my digestion. (If you are taking too much magnesium, it can have a laxative effect).
RobinN
Super Mom
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400 mg is the RDA and it was suggested by a MD that I should work up to 800 mg.
I actually trust my body to tell me whether something is too much. I have done massive amounts of research on magnesium, and your body will let you know if either you have the wrong variety or if what you are taking is too much for your system.
Caffeine is one thing that causes magnesium deficiency. Along with farming practices that have depleted it from our foods.
I actually trust my body to tell me whether something is too much. I have done massive amounts of research on magnesium, and your body will let you know if either you have the wrong variety or if what you are taking is too much for your system.
Caffeine is one thing that causes magnesium deficiency. Along with farming practices that have depleted it from our foods.
All in a day of life with E….
Was hired for new job and they almost pulled out cold feet due to E and were clearly hoping he would throw towel after 'their chat', but no he made his case was logical and with (com) passion and they agreed to still give it a go at acceptable contract! Faith in humanity restored, but even more faith in my Son who was able to handle this head on.
Said to me, I’m glad it’s me with the E and not my girl because I can deal with this. I am not ashamed by/of it nor am I scared (but we know people are) and am learning to handle this in the 'world', I may have E all my life and if I do there is no better person to deal/live with it…wow (that warms a mother heart).
Therapy and NFB / bio feedback and support left and right from his clan and excellent nutrition ARE helping…overall.
Magnesium in the next delivery basket and waiting for results of visit to the doc....
For today all is good
Was hired for new job and they almost pulled out cold feet due to E and were clearly hoping he would throw towel after 'their chat', but no he made his case was logical and with (com) passion and they agreed to still give it a go at acceptable contract! Faith in humanity restored, but even more faith in my Son who was able to handle this head on.
Said to me, I’m glad it’s me with the E and not my girl because I can deal with this. I am not ashamed by/of it nor am I scared (but we know people are) and am learning to handle this in the 'world', I may have E all my life and if I do there is no better person to deal/live with it…wow (that warms a mother heart).
Therapy and NFB / bio feedback and support left and right from his clan and excellent nutrition ARE helping…overall.
Magnesium in the next delivery basket and waiting for results of visit to the doc....
For today all is good
little update.
med blood levels in good range, if he needed to increase the valporic he could, not in the planning but room to increase IF needed. He was scared to death of changing meds
and he has done no research on the other meds (though I have done plenty) but I know he felt the adjustment to valpro was big enough for him to worry about trying another.
Vit D3 levels at 77ng (optimum is 50-80 ), takes 1000IU D3 a day. Liver, kidney, calcium, glucose, thyroid perfect. blood results all came back great.
So, I will top this off with Praise the Lord for 4 weeks of seizure freedom and a good day’s peace!
med blood levels in good range, if he needed to increase the valporic he could, not in the planning but room to increase IF needed. He was scared to death of changing meds
and he has done no research on the other meds (though I have done plenty) but I know he felt the adjustment to valpro was big enough for him to worry about trying another.Vit D3 levels at 77ng (optimum is 50-80
), takes 1000IU D3 a day. Liver, kidney, calcium, glucose, thyroid perfect. blood results all came back great.So, I will top this off with Praise the Lord for 4 weeks of seizure freedom and a good day’s peace!
No seizure activity...none. 5 weeks heading to 6.
In his neurotherapy/bio-feedback session today, his therapist and he discussed how stable his brainwaves were becoming and consistently, that’s 3 weeks on the go now (even with lots of stress on) feedback is showing a better balance of slow and fast brainwaves, when he started this therapy some of his fast waves were on big time over drive time, all the time.
They going to do EEG next week to see if the changes are visible on the EEG…..Will take a while for the results. I’ll be back….I for one want to keep him in this training for some time, but not only me, he is so still excited about it and he says it all the time, this is helping me put it all back in place!
He moved out of girlfriend’s house a week ago. We know the stress that can bring on…Instead of being backed into an emotional corner = seizures, he made a decision to move out and stuck with it. Even I was surprised yet delighted at this ‘decide and do’ attitude, he is coming a LONG way in knowing the and setting boundaries. They still seeing each other (it’s been a hell of a journey for her too and that I will never deny that, 2 young people wanting to sail through life and whala E hits, now pick up the pieces)..
As a carer I know its much more than take the meds and you will be OK (bullshit to that, u won’t hear me swear often). All that comes part and parcel with E and the meds and how IT ALL is making the person with E feel/act/react needs to be addressed. KEEP exploring the alternatives in conjunction with meds…CWE has helped me always have something in my back pocket to keep my Son on the positive road……
So with this, to all on CWE….my heart has a special place for you, for your sharing and caring has helped us keep going and book progress…..and everyday seizure free is a day to rejoice!
In his neurotherapy/bio-feedback session today, his therapist and he discussed how stable his brainwaves were becoming and consistently, that’s 3 weeks on the go now (even with lots of stress on) feedback is showing a better balance of slow and fast brainwaves, when he started this therapy some of his fast waves were on big time over drive time, all the time.
They going to do EEG next week to see if the changes are visible on the EEG…..Will take a while for the results. I’ll be back….I for one want to keep him in this training for some time, but not only me, he is so still excited about it and he says it all the time, this is helping me put it all back in place!
He moved out of girlfriend’s house a week ago. We know the stress that can bring on…Instead of being backed into an emotional corner = seizures, he made a decision to move out and stuck with it. Even I was surprised yet delighted at this ‘decide and do’ attitude, he is coming a LONG way in knowing the and setting boundaries. They still seeing each other (it’s been a hell of a journey for her too and that I will never deny that, 2 young people wanting to sail through life and whala E hits, now pick up the pieces)..
As a carer I know its much more than take the meds and you will be OK (bullshit to that, u won’t hear me swear often). All that comes part and parcel with E and the meds and how IT ALL is making the person with E feel/act/react needs to be addressed. KEEP exploring the alternatives in conjunction with meds…CWE has helped me always have something in my back pocket to keep my Son on the positive road……
So with this, to all on CWE….my heart has a special place for you, for your sharing and caring has helped us keep going and book progress…..and everyday seizure free is a day to rejoice!