Biofeedback, Nutrition

[Nakamova]

I love hearing this! A holistic approach, a team effort, and real progress in seizure control and quality of life.

[Chaz1]

My Son has EEG today (delayed it) right now this min in fact, monitor Biofeedback/neurologist-therapy progress.

Last session they pushed the feedback to the highest level and his brain remained calm . I will back with EEG results…

His last T/C seizure was 4 weeks and a day ago. Relationship break down - they split. T/C not coming as fast and furious, that’s 1 T/C in 11 weeks when they were heading to 1 each 2 weeks.

We can wait for a T/C when he has emotional stress making relationships not all too easy. But he sure learning along the journey….because it’s not easy on both and that’s a fact that needs to be acknowledged/ addressed.

If short term is already a battle, then the road ahead will be long and probably miserable. Having a partner with E does not mean seizures only, the lead up to, the after math, the meds, the worry/care/support and some….real love and devotion needed for this. my Son was so impatient with me this morning for nothing really, shed a private tear and moved on…will definitely gently remind him to keep ‘aware’ of his behavior despite the meds.
I am Mum so easy for me, but I can understand it’s not all too easy in a partnership. I will keep my Son aware of this for his future partners…by talking about it ALL…

4 weeks seizure freedom for my Son :-) for today we have and it’s a good day.

[Nakamova]

So glad his seizure control keeps improving. Sounds like the journey has had a few bumps for both of you, but it is still heading in the right direction. Let us know what the EEG reveals.

[Bernard]

Super great news Chaz1 and yes, you are right about the greater toll of caring for someone with E. I don't know the situation with your son and his current partner, but it is possible (not saying this is the case for your son and his partner) that his improving condition could be an issue (even subconsciously) for the partner. Some people are drawn to people with medical issues either to satisfy a caregiver need or psychological fulfillment in feeling superior to another. As the seizures abate, those basis for attraction disappear. I would say, if his improving condition is leading to greater tension with the partner, it is probably healthy and for the best in the long run.

[Chaz1]

Finally got him to start on magnesium today - 200mg daily :-)..another protecter added..

We still waiting for neurologist/bio feedback therapy EEG results....they said he was in very relaxed state so will give good insight due to no emotional peaks (all has settled down well in the relationship split) be back on this...

[Nakamova]

Hope he is continuing to do well Chaz.

[RobinN]

Great news!

[Chaz1]

Magnesium - oh wow.

Sleeping like never before, silent sleep with great wake up...which we are not used to from past pattern…

Hand tremor (defo the meds/ valporic)...said he was a bit taken back yesterday to see no tremor at end of long work day (in the chill hour after work) - normally it was very present…

200mg only…to start, seems to be promoting overall rest, so much so I’m taking it to.

[Nakamova]

Yay! I'm thrilled to hear that the magnesium supplement is making a difference. I wonder how many others might benefit in similar ways. Hope the good effects continue for you both.

[KarenB]

Quite intrigued in the magnesium helping with sleep, and Chaz, I hope you will keep us updated on the effect it has on your son's seizures.

Does anyone know if a double-blind study has been done on the effects of magnesium supplementation on epilepsy? I haven't been able to find anything. Did find a couple of other studies -- one by the Hereford institute, but apparently no sort of strict controls or anything, but did have remarkable success in treating 28 children with epilepsy intractible to meds. Also found a couple articles on using magnesium to treat infants with low APGAR and women with eclampsia -- that sort of thing.

I did find this website:
http://lpi.oregonstate.edu/infocente...als/magnesium/

It gives the RDA for magnesium . For our Jonathan (8 y o) it is 130 mg/day. For an adult male it is 400 mg/day. However, the site also points out the dangers of magnesium oversupplementation, which can include diarrhea, impaired kidney function, and even cardiac arrest. Apparently, you can't overdose on magnesium IF it is coming from the diet, but can reach toxic/harmful levels if coming from supplements.

The article lists some foods high in magnesium, and also has a chart for "Tolerable Upper Intake Level for Magnesium Supplementation" that is considered safe and not causing adverse affect. However, it also notes certain medical conditions may warrant higher doses of magnesium under medical supervision.

For our Jon (8 y o , the tolerable upper limit for supplements is 110 mg/day (actually less than the RDA). For adults it is 350 a day.

[Chaz1]

Nakamova, as always thank u.

Karen, couple links I had found and yes hard to find conclusive studies, I will for sure be back with seizure update, praying it will be good news....will also ask my Son to make appointment to get his blood levels tested again this year..

http://www.ncbi.nlm.nih.gov/pubmed/22547512

http://www.ncbi.nlm.nih.gov/pubmed/22406257

http://www.neurology.org/content/47/5/1264.short

[Nakamova]

I think one issue for studies is that it can be tough to test for a magnesium deficiency -- just testing blood levels isn't always accurate since "normal" blood levels of magnesium don't necessarily reflect the body stores of magnesium. The body attempts to keep blood magnesium levels relatively stable and will release magnesium from bone and tissues to accomplish this.

If you supplement with magnesium, it's a good idea to start with a minimal amount. If you do experience diarrhea, that's a sign to back off the dose.

[KarenB]

Chaz -- praying with you too for seizure freedom for your son

Nakamova - I know what you mean about the difficulty in testing for magnesium. Some hospitals that administer the ketogenic diet will do a baseline test for magnesium, and then test for it periodically, but our nutritionist doesn't do this (although she checks for vitamin levels and carnitene -- that sort of thing) -- probably for the reason you mentioned.

But studies have been done on the effectiveness of magnesium without testing for deficiency. For instance, one study compared giving a dose of 250 mg vs a dose of 400 mg to newborn infants with low APGAR scores (I think it was a one-time dose). The babies with the higher dose fared much better.

At any rate, I think we will try raising the amount of magnesium Jon is getting. He has a problem with diarrhea (and the addition of Zonegran isn't helping things), so we have to tread carefully.

At this point, we're going to go back to his regular dose of Nutrivene D (a vitamin/supplement combo designed esp. for kids with Down Syndrome) which will give him 80 mg of Magnesium Citrate (does the type of Magnesium matter?) Because the full dose has close to 3 carbs (and he's only supposed to get 8 to 10 carbs a day), we'd cut back to a half dose to try to bump his ratio up and regain seizure control, but that didn't work -- in fact, going back and looking at his seizure log -- his seizures got worse after reducing his vitamins/supplements -- hmmm!!!

So, anyway, that will get him up to 80 mg a day via supplements, and then we are gradually increasing his flaxseed meal to 10 g a day (which is 40 mg of magnesium). So that would give him 120 mg of magnesium a day -- 1/3 coming from diet ,which is probably better absorbed. He also alternates between either tuna or avocado for his lunch most days, and both of those foods are also good magnesium sources.

We'll see how these changes work.

[KarenB]

Oh Wow! OK, I just went back and was analyzing Jon's seizure log, and this escaped my attention, because I was focusing on his foods....but...

His Nutrivene D has megavitamins (of the vitamins that are safe to get in higher doses) plus other stuff like Taurine and magnesium, (and about 20 other supplements).

From July 10 to Aug. 6 (almost 1 month period), Jon had 3 tonic/clonic seizures and 4 tonics.

On Aug. 6, we increased his ratio on Keto diet. In the next 2 weeks he had NO tonic clonics and 3 tonics, and then several nighttime episodes where he simply grunted or made an "aaghh" sound -- but not a clearly defined seizure (probably mild seizure).

On Aug 18, we decreased his Nutrivene dose to 1/2 in an effort to bump the ratio up more. The very next day he had a tonic/clonic, and in the next week he had 5 tonic clonics and 16 tonics!!

Then his doctor put him on Zonegran and Diazepam which stopped the tonic clonics and reduced the tonics by 1/3.

But...oh my goodness -- now that I look at his chart and factor in the vitamin/supplement change, there was a DRAMATIC change in seizure activity when lowering the vit/supp by half. I suppose it could be coincidental, but now I am absolutely kicking myself for not noticing it sooner!! We might have been able to avoid going back on meds.

[Nakamova]

I hope the vitamin supplement makes a positive difference for Jon, and that going back on the full dose will help. Good for you for tracking his seizures closely along with the other info about his meds and nutrition.

The kind of magnesium can make a difference. Magnesium citrate is generally considered the best, though absorption of most forms can vary person to person, depending on age and health. There aren't a lot of reliable studies on magnesium absorption, due to this variance between individuals, as well as the lack of
accurate testing methods mentioned above. Plus, the magnesium isotope has a very short half-life, so it's tough to even use those tests that measure the rate of excretion/elimination from the body.

Magnesium hydroxide is the form used as a laxative, so you'll want to stay away from that. Magnesium in any form is best absorbed with food. And make sure he's drinking plenty of water (especially because of the Zonegran) to avoid stressing the kidneys.

Some folks have found that ionic magnesium in liquid form works especially well, but you may find that what he get in his Nutrivene is enough to help.

Here's a CWE thread on the topic:
Magnesium -- which form?

[KarenB]

Thanks, Nakamova -- you are such a wellspring of useful information!

Yes, we ARE making sure Jon is getting plenty of water -- we have to do that with the Keto diet anyway (his nutritionist prescribes at least 50 ounces a day), and now with Zonegran are being extra diligent. He usually enjoys drinking water, so no problem, but since starting the Zonegran, not only has his appetite decreased (usual side effect) but he doesn't want to drink as much, so we've been having to really work on getting the fluids down.

[KarenB]

Nakamova, I know you posted a link about biofeedback, and now (that I have a few minutes to read it) can't find it -- thought it was in this thread

[KarenB]

Chaz -- can you give a little more info on the music therapy that your son is using? Is it part of the biofeedback, or something separate? Does it mainly involve just listening or some sort of interaction? Are earphones part of the therapy?

We tried to put Jon on a different type of music therapy for Hyperacusis (painful noise - certain noises often make him cry -- like a woman laughing, a lot of people clapping, anyone speaking or singing into a microphone, etc.). The problem was that he wouldn't tolerate the earphones. That problem seems to wax and wane -- oddly enough, when he's seizure free it is worse, and when he's having seizures it seems to go away.

At any rate, his cognitive level is too low to do a lot of interaction except at the most basic level, but interested in more info.

[Chaz1]

Karen, Dont think they used earphones...I will check with my Son (find out more details) and come back to you. Yes it is part of his biofeedback/Neurothearapy sessions.

[RobinN]

Karen B - Rebecca's prior neurologist at USC Neurology, encouraged us to give magnesium. Said it was an anti-convulsant, and that they had seen good results with some of their patients.

400 mg is on the low end. Many are recommending more.
If the higher doses are a problem, you might consider ionic magnesium which is given by drops under the tongue (sublingual). It doesn't move through the intestines.