Behavior worse on supplements?

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Registered: 03-27-2003
Behavior worse on supplements?
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Thu, 02-02-2006 - 5:02pm

Hi all:

Sometimes I post about our 6 y/o. He's not really diagnosed anything - except officially very severe SID. Neurologist was leaning towards ADHD and not AS like older brother, but then he (Dr.) went in the hospital and we haven't finished the tests.

Anyway, we like to do B vitamins and calcium and zinc, probiotics, antioxidants and Omega 3 - and it's hard to find all together in a palitable form (Colin won't do pills). So, I found something called "Added Attention" that seemed to have most things - but also DMAE. DMAE is supposedly a natural stimulant and helps with attention.

Well, Colin went totally bonkers manic on us! He wasn't upset, he was happy but he was fast fast fast and out of control. I've read both for and against that if you medicate (stimulate) ADHD and get this kind of response you are dealing with Bi-Polar. But, our oldest (13) is as Aspie as they come and he did same thing on Ritalin. So....? Anyone else have any similar experiences or negative reactions to anything?

TIA,
Jackie

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Registered: 09-09-2005
Thu, 02-02-2006 - 5:43pm

Well, first of all, as with all neurological disorders, bipolar is on a spectrum.

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Registered: 04-11-2003
Thu, 02-02-2006 - 5:44pm

Yep. Kyle couldn't tolerate any multi's at first. Didn't tolerate b's at first. Did ok with zinc at first but then didn't tolerated it any more and then recently needed it again. After supplementing single vit/minerals for a couple years he can now take a multi. He doesn't tolerate DMAE though. I've heard lots of spectrum kids don't do well on it but a lot of ADHD kids do.

Samantha

Samantha
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Registered: 02-24-2004
Thu, 02-02-2006 - 5:50pm

Jackie,

My son, Nathan, is 7yrs old. I found some supplements called "Pedi-Active", which contain DMAE and LECI-PS (phosphatidylserine-rich purified lecithin concentrate). I also saw "Added Attention" but went with the other one.

Nathan did really well at first...tons of improvement with focus and speech. But it only lasted a few days. So we took him off and then just recently, I started him back on this. This time I lowered the dosage, and was going to slowly increase it. But I didn't have such good results this time.

Nathan was extremely busy and constantly moving. He moves around alot already (but he's not agressive by all means), but this didn't help....made it worse. So, I just took him off.

I really wanted to see if supplements would work for him, but I don't think that this is the best approach for Nathan. He doesn't have any behavioral type problems, but I was hoping that we could help him to be more focused and not so obsessive.

Wish I could be more help. Nathan takes a multivitamin, extra vitamin c, and melatonin at night...but that's it. I find that just working on his behaviors....gives us better results.

michelle

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Registered: 03-28-2003
Thu, 02-02-2006 - 7:38pm
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Edited 4/1/2006 10:40 am ET by littleroses
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Registered: 04-11-2003
Fri, 02-03-2006 - 10:03am

"My youngest daughter takes seizure meds. She is calcium toxic and glutamate toxic. "

This made me think of Dana (Dana's View). I believe she used IP6 for calcium toxicity. I was just wondering if you knew of it.

Thanks for all the info. I find all the metabolic stuff very interesting. Kyle certainly sounds like a undermethylater and he craves sulfur foods and carbs and I don't believe he assimulates the fatty acid supplements I give him. I've been thinking about trying Lypo help with that.

Samantha

Samantha
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Registered: 03-27-2003
Fri, 02-03-2006 - 11:35am

Littleroses: Actually, I looked into the methylation issue before upon your good suggestion! Trouble is, it sure seems like Colin fits both descriptions. He had terrible time with allergies as an infant and lived on 4x a day doses of prescription antihistamines. I know the stuff makes him feel good - he always tell me how much he loves it when he takes it. He also seemed to have a zinc deficiency (white spots on nails and dry hair) and when I did make some supplement changes (zinc, B6, epsom salt baths, Omega 3-6-9) he did get a little less anxious. Can't say his attention improved any - or his sensory issues lessoned any, he just seemed more easy-going and happy.

The seizure information is very interesting because DH's family is the Asperger side, and depression and epilepsy are both strongly present there. On our side, we have heart irregularities due to incorrect adrenaline use and diabetes. I'm positive that there is some specific bio-chemical thing going wrong (in all of us) but despite tons of research have not been able to find something that describes exactly our situation. It seems that the whole system has many variables and although there are "familial" tendancies, each person is so different.

I sure do appreciate your experience, though. It helps me to think I'm not just nuts to believe there is some root metabolic thing out of balance here.

Our OT is strongly suggesting visiting a DAN! Dr. but DH is kind of against that. It's hard enough for him to accept my giving DS supplements. (Aspies are very stuck in their ways. :-) )

Maybe this summer I can put him back on DMAE and see if he stabilizes after a time - but certainly can't have him out of control in school again!

Jackie

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Registered: 03-28-2003
Fri, 02-03-2006 - 11:47am

I have seen her say that too. I can see how IP6 could help, but I am surprisingly choosy about what supplements to give due to the seizure meds. IP6 occurs in high fiber foods. Constipation tends to lead to a build up of calcium. I do try to ensure she has a regular BM instead and fiber in general instead of IP6 as a pill.

If you think he is an undermethylator and not using the fatty acid supps you are giving him, then I would look into learning about supps that will help burn fats. You're right that the fats you give him then would be possibly not used effectively. It's probably WAY better than the other fats, but still would rather help his mitochondria push it through. Bile emulifies fats. Hydrochloric acid is the only known stimulator of secretin (a glucagon analog...the blood sugar thing again) and also signals bile production, etc. So then low HCL would not be a good thing if this is true. I am trying to learn what would cause the low HCL, etc. Something to do with the duodenum, but I haven't taken the time to read more about it yet.

I have some of the Lypo, but didn't see the results I had hoped for or that I see when I use the Houstons enzymes. I recently doubled the dose of HNI enzymes I had been giving her and was surprised to see even more improvement. So, I may have to try doubling it with the Lypo too. She is also on a very low dose of carnitine, but that was prescribed by her pediatric neuro because her medication depletes it.

If Kyle seems to do better on sulfury foods, I found whey to be very good. My daughter responded really well to that (and I give it to her with enzymes). I buy the chocolate whey protein isolate with lactoferrin from lef.org and I only give her half a scoop (in a chocolate milk treat). The whey tends to be constipating though so I have to offset that a bit or I alternate days I give it to her. I only use a small amount, like half a scoop a day. May not be for everyone, but my daughter does fine with dairy so as always, it's completely individual and intuitive.

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Registered: 03-28-2003
Fri, 02-03-2006 - 12:48pm

Just so you know, I don't know if you should try DMAE again or not. What I do think is that sometimes symtpoms can be a good or a bad sign and you eventually get a feel for what is an okay side effect or not. What I believe...and I can only speak for my own observations...if the side effect seems to go away in a relatively short time, it is probably okay. But if the side effect is chronic and absolute, then your body is emphatically trying to tell you this stuff sucks. Like anything, this may not always apply to every person, of course.

I guess what I was saying with the coffee and adderall stories were that hyperness can be seen as either a good effect or a bad effect. In both cases, coffee and adderall are initally bad (hyperactivity), level off to benefits...but long term results are damaging. The coffee is damaging my kidneys. It increases uric acid levels and is messing with my kidneys and makes the arthritis in my hip worse (and I'm only 34). But, I sure get a lot of work done and my head feels a little more clear. So, the long term tradeoff is not probably worth it...but my powers of denial are stronger than my will powers. LOL. It was a similiar story with adderall and my oldest daughter.

But, in my other daughter's case, the enzymes caused her to be hyper for a day. This ended up being a short term side effect, yet with long lasting beneficial results. The enzymes are not so great for my oldest daughter or myself. I never got hyper, but i feel my overall "works" are overactive and I do not need extra help from enzymes to only make it go faster. My youngest daughter (with the seizures) has a slow system that does need added help so having the enzymes are great for her in this case.

You're right about the methylation thing. Nobody seems to fit right down the line in the categories. I don't either. However, I think the histamines and fat metabolism are the biggest compasses to focus on for the sake of simplicity. Then you can kind of specialize from there when you feel you have a handle on it.

Unfortunately, despite all we try to learn, there is no answer yet, you're so right about that. I don't go to a DAN doctor either and I don't give many supplements: whey, enzymes and carnitine (prescribed by a pediatric neuro to offset seizure meds). I am still learning about other supplements, but I like to be thorough so mostly I just try to learn and watch. I don't have anything against going to a DAN doctor. I just have various personal reasons, one of them being that I feel my daughter has had enough hospital and doctor experiences in her lifetime thanks to her epilepsy alone. Just another one of those personal variables.

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Registered: 01-19-2005
Fri, 02-03-2006 - 2:11pm

Hi Jackie,

I just wanted to say we are going through something similar, but not exactly the same, although I have questions like yours.

About 2 months ago we started Brainchild Supplements Spectrum II. This company formulates multivits in liquid form for ASD kids, and has several different levels that have different gradations of the vitamins included. The minerals are separate from the vitamins.

The recommendation was to start with less than the recommended dosage and gradually increase the dosage to the full level. Eric did great on the minerals, in fact, they seemed to calm him. Then we added the vits, which have medium level B's (more than a regular kid's multi, less than Supernuthera, the other ASD oriented multi). They also have DMAE and TMG. Eric did ok at the lowest level of the vits, but when we increased them he started to be a little hyper, not bad, but noticeable.

I called the company, they said drop back down to the lower dosage for a few days, see if he settled, then try upping it. He did settle down. So I went back up a little, now it's like your child. He's hyper, but also euphoric. VERY happy. I'd like to say this is a good thing, but I'm not sure. His speech has always been good, but now it seems slightly better--like his mind is moving faster. We just started 2 days ago at the higher level (which is only 1/2 tsp, 3x daily). On the Supernuthera he was hyper and irritable, just miserable, so this is better than that for him.

LF, what you said makes sense. I'm going to stay at this level a few more days and see what happens, if it "wears off" or not. Then I'll call the company again. I too was wondering about the DMAE/TMG since he's never had that before.

LF, do have any good suggestions for reading about mythelization? I have no idea if Eric is over or under. We don't use as a DAN doc either, our neuro ped recommended these vits, numerous parents seem to report good results too. If these don't work, he suggested Kirkman's Spectrum Complete, which is kind of in-between the Supernu and the Brainchild. I do have the McCandless book that has a small section on the mythelization stuff. She seems to just say go for trial and error.

I do feel there is something to this supplement stuff, at least in our case, but sometimes it is tricky, each child's chemistry is so different.

Jackie, BTW, we also take omegas, and a probiotic. My guy has tummy issues and the probiotic really helps.

Katherine

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Registered: 03-28-2003
Fri, 02-03-2006 - 8:32pm

Here is a very nice chart someone put together which makes it a little easier to overview.
http://tinyurl.com/9mlc3
It's not definitive, of course. I strongly fit the overmethylator column, but there are things that just don't apply to me either. I do know for sure that I am low histamine so I use that as the main marker. In addition, knowing that the undermethylator recommended supplements are not good for me because many of them involve pushing backlogged fat metabolism. I also tend to be chemically sensitive as opposed to allergic to things like dust, pollen, etc. I am highly sensitive to smells and can't tolerate most air freshners or plug in type things. I rarely get headaches, but these cause them for me. Because I am low histamine, I get a very calm feeling on niacin and never, ever have had a niacin flush, which I hear is very uncomfortable. I guess the niacin reacts with histamine which is no fun for a high histamine person. That was another indicator for me.

My younger daughter who is doesn't show any obvious allergies either way sinus type or chemical type, but because of her slow fat metabolism and her similiarities to her dad, I think she is undermethylated. My dh does have sinus issues and does get a niacin flush. Because niacin has an effect on the liver, I never tried it on my daughter because of her seizure meds (which are already hard on the liver) and because I believe she is an undermethylator. I honestly had to read over again and look up individual terms. It's not something mainstream doctors go by. The Pfeiffer people even say on their website that it's hard for some of their staff to grasp at times. I won't pretend to know much about it or that it's THE answer, but I think it's really good in finetuning what supplements are good for some people and bad for others. I personally have a mental image in my head of flipping switches when I think of methylation. You don't get to flip all of them, but enough to turn on a little light. But, that's just my way of understanding it and I don't really know if that's truly a good way to imagine it.

Karen has a really good article too which I go back to repeatedly.
http://www.enzymestuff.com/methylation.htm

I haven't tried probiotics, but I am leaning on adding those in. I know others who have said good things so it sounds encouraging and reasonable to try. What kind and brand do you use?

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