Multi-vite I like from Kirkman

[Claire]

Capsules are so much easier to swallow than tablets. Finding a copper-free capsule was hard. The ingredient list won't post, sorry. Seems to me a nice basic--finally. So many have lots of niacinamide--not good if undermethylated.

 

Just a touch of manganese I think at least a little is still important, even for tic syndromes. But too afraid to do a lot. Nice mix of P5P and B6. Also, folinic acid instead of folic acid--one step further down the chain. Not enough zinc, fine with me cuz we supplement it separately.

 

http://www.kirkmanlabs.com/products/multiv...ra_hypo237.html

 

My goal is to cut back on pills, and this is cheaper than compounding. This won't meet all your needs, just a basic--my biggest concern is the balance of B's when supplementing individually.

 

My issue with Bonnie's (I considered them as I searched) is too much niacinamide. IF Pfeiffer's 45% undermethylated in ASD number applies to tic syndromes, that much B3 is bad as niacinamide 'steals' methyl groups per Pfeiffer and the www.enzymestuff.com site

 

Claire

[Andy]

My DAN doctor's office uses Kirkman vitamins, etc. I am very careful where I order from to insure that what I get is what I expect and everything that is supposed to be in there is. So we order from Kirkman ourselfs. I would recommend to anyone to look at there website as well.

[kim]

Hi Everyone,

 

I went to the health food store looking for a better multi for youngest son. I was looking for one low in folate. I had read here Animal Parade was a good one. I think it was Marie or Alison that uses it? Anyway, I have been over and over the link Claire/Jennifer, posted to the lengthly article with Dr. Walsh from Pfeiffer. (this is awesome reading) However, when reading through some old post tonight, I read this post by Claire. I thought I had it wrong, that it wasn't folate that was bad for undermethylated people but Niacin, so I got my copies out and read- undermethylated persons, who thrive on methionine, SAMe, Ca, and Mg...but get much worse if they take folates &B12 which can increase methyl trapping. Then he goes on to say undermethylated persons generally exhibit very elevated folate levels and these persons get worse if additional folate is given. Can anyone clarify this for me? It mentions in another section (Trichotillomania) assoc. with undermethylation, that folic acid, clonine, DMAE, and copper should be strictly avoided. I have'nt found anything mentioning niacin yet. I have also noticed the great remarks he makes regarding Inositol for under M. people. Since so many here seem to report their kids sleep better after taking supps. and Bonnies Vit. contain this; aninmal parade even has a touch in it, I am thinking If I had a great Dr. like some of you do, this is something I would be asking about. I suspect it may have the calming effect that Clonidine appears to have in the beginning, unfortunately the benefits, I found to be short lived, other than helping with sleep issues(although it can-and did cause nightmares for youngest son) Also, the niacin in Bonnies Vit. is niacin as inositol hexaniacinate. Have no idea if this makes a difference or not. As a side note I am having ZERO success removing dairy from youngest diet. Chocolate almond milk was delicious, he would'nt touch it. Goats milk I thought was disgusting, I have rice and I guess as a last resort Soy, Is there a reason soy should be avoided other than the fact that many with milk intolerence have soy sensitivity too? Glad to read most here are doing well. I was so tempted to PM Claire, but I restrained myself although if your reading Claire, I got a kick out of your reference to my former Neuro .

Kim

[kim]

Marie,

 

The "key word search" came in very handy. I just wanted to know if you supplement with calcium/magnesium and zinc, while using the Animal Parade since it's low in these things. I know you are pretty much doing maintenance at this point, so maybe you don't feel you need to?

 

Alison, were you able to come up with a multi, that you're comfortable with?

So glad to hear that you feel like you're to a point where you can think of reducing.

 

 

Kim

[Chemar]

Hi Kim

I have always felt soy was good, and Dr Weil and others also promote it, but I have noticed that Dr mercola is on a major anti Soy bandwagon lately.

[kim]

Hi Chermar,

 

Is there anything in particular he is concerned with, or could you tell me how to read his work? I have no idea who he is.

 

My boys were both on soy as infants. Both seemed to tolerate well. I never reserched at all, just gave it to them because the hopital where they were born recommended it. After, I heard a few things regarding the powerful hormonal effects that soy can have. I felt a little uncomfortable about that, but it was far to late to debate at that point.

 

Kim

[Chemar]

sorry.......didnt remember to put the link to his website

 

http://www.mercola.com

 

you can use the search box to get info there

 

I get his newsletter and there is a lot of very good info, but sometimes his views are so directly in contrast with my favourite health guru, Dr Andrew Weil, that I get confused. I just find Dr Weil having a lot more balance in his approach and his qualifications and experience are glowing credentials. So when in doubt, I tend to defer to Weil.

 

http://www.drweil.com/u/Home/index.html

[kim]

Thanks Cheri,

 

I had found him and did just what you said, I typed in soy, and just looking at the head lines regarding it, I thought I might want to read it later! I think I'll check into your other favorite-hoping he Will provide balance after I scare myself to death.

 

kim

[ad_ccl]

Hi Kim,

 

Regarding multi - vitamins, my son takes a brand called Quest. He really likes how it tastes and he gets two a day - which is the dose recommended. I found them at a health food store and have tried a few other chewables that have more in them but he does not like the taste so I have just decided to leave well enough alone.

Regarding soy - the issue is that somewhere between 30-40% ( can't remember exact stat) of those allergic to milk also have an allergy to soy. When we first went off milk with my older son prior to testing we put him on soy and limited to 2 cups a day - he had been having 6-8 of regular milk. We did see improvements on soy - but once the testing came back and he went off all the foods we saw even more of an improvement.

At the same time we put my middle son on soy just to make life easier but we did not limit his soy so he had his usual 6 cups a day - within days he was miserable, terrible temper tantrums which he had never had, then he started having accidents, it took me 2 weeks to put 2 and 2 together, in between that time I took him to the ped 2 times due to the accidents and worried he had a bladder infection. Then he started having diarrhea so on the third visit to the ped we discovered he was severely constipated and compacted causing pressure on his bladder and the diarrhea was just the lower part (yuck - sorry if too much info) He was scheduled for an ultra sound on the Monday ( this was the Friday) that night we gave him lots of fruit etc and he pooped 16 times over the next 2 days. His demeanor changed back to his normal happy free spirited child and the accidents stopped. When we did his testing he came up highly allergic to milk and soy. My older one with PANDAS was highly allergic to milk and moderately allergic to soy. My husband came back highly allergic to milk and fine with soy. So the stats ring true in our home.

 

Hope that helps.

 

My son continues to do amazing, he has not had any tics for a few days now, and prior to this the one he had was very subtle, no one would notice it.

[kim]

Hi Alison,

 

Thank you so much for the reply. From what you said I guess the bottom line might be to introduce the soy in limited amounts, if I can even get him to taste it, and watch carefully.

He is SOOO sensitive to taste and a little phobic I believe, that this is like pulling teeth. The other nite he had 3 string cheese and a small bowl of cheddar and about 2-- 4 oz. glasses of milk in the evening. When I woke him up to use the bathroom at about 11:30 he had already wet the bed. He peed (quite a bit) at that wake up, and then his bed was wet again in the morning. I'm finding without even eliminating milk altogether, just keeping him off of it from about 4:00 pm on-he does better. However my main goal here is to get him to start eating normal foods, and I really think I will have little success until I increase some supplements, possibly a little more zinc then his multi contained and remove the dairy. I have read so much where zinc has an effect on the way things taste. Claire also felt strongly that his zinc was low at 76. I have decided to switch to a better multi, supp. a little with mag/cal and zinc (not exceeding ul limits in anything) and work on removing as much dairy as possible. This will be a slow process I'm sure. I am going to hold off on the pyroluria testing for now, as I'm afraid if the lab that does that test, even sent a report to my pediatrician, I might be banned from his practice also. I felt it was really apparent at the streph visit, that his attitude had changed, probably due to the letter the neurologist sent him. I can't bring myself to ask for a copy of that letter, as I feel unable to deal with the anger right now, and would rather focus on what I'm doing here.

I'm so glad you were able to get to the bottom of the problems with your son regarding the soy. That must have been Horrible for both of you. Don't ever worry about being graphic, that information you shared could have spared my son the same thing.

 

Kim

[Claire]

Kim,

 

I really do intend to stop posting for a bit, but am not doing well yet...

 

 

If you want more zinc without exceeding the RDA, then I would give it by itself at bedtime if at all possible. Absorption is much better.

 

As for the folic acid, niacin thing and Pfeiffer, they are not very clear on the site. I asked the Pfeiffer doctor, and hers is only one opinion, but she didn't want more than 25 mg Niacin (any kind) and DID want some B12 and folinic acid supplementation (vs folic acid for some reason). More reading was that the folate levels are hard too manage...my son had a folic acid deficiency earlier AND was undermethylated. Apparently this isn't uncommon. In the end, even with undermethylation, Pfeiffer wanted 400 mcg folinic acid (not folic acid--that is why I liked the Kirkman vitamin, and now I am going to compound them), plus 2500 mcg oral B12, which I told them to change to 1000 mcg B12 sublingual and they agreed (don't know why they said oral in the first place).

 

As for niacin, we tried to restrict it per Pfeiffer and my son was borderline low, so now he gets it again. So we do the daily allowance. In the end, my DAN doctor figures the normal daily allowance is fine--except for copper and manganese, and maybe iron.

 

If you really want a pyroluria test and your only reason is not to have your doctor see it (don't blame you), then Biocenter Labs in Kansas does it without requiring a doctor's name at all--meaning they absolutely don't send one to your doctor (unlike the DAHC lab). If you also have other reasons for not doing it, then never mind. If you do Biocenter though, I would add an extra ice pack.

 

Soy is an odd one. Alison is right about it being a common sensitivity, and we were told it can slow down adrenals. We still do it, but he isn't sensitive to it (per the tests) --though he was sensitive to milk, so we just limit it. Chemar is right, Dr. Mercola is also very anti-soy right now. A dairy habit is tough to break--have you considered running out of milk for a few days to break the habit? I just say this because you seem to find a clear bedwetting correlation, which implies other issues with milk. Also, if he was drinking that much (6-8 cups) it implies that old 'addiction to the dopamine' or whatever. My son drank 4 cups a day--he adored it. I didn't even try to substitute the milks, just did water.

 

If not, then my next suggestion is bad to the AFP Peptizade by Houston Labs to see if it makes a difference in how he handles dairy, then the zyne prime two weeks later. I am starting to repeat myself on enzymes, but this is one thing I think is worth trying when diet can't be restricted. If it works, you will know soon enough. Then you can drop it. I personally noticed the Zyne Prime with milk and carrots the same day and retested and retested many times.

 

Don't know how you would deal with that volume of milk though--you can call Houston Labs and ask them.

 

Good luck.

 

Claire

[kim]

Hi Claire,

 

Oops 6-8 glasses of milk was Alisons son. Mine probably has about 4-4oz. cups per day, but he eats cheese, yogart and peanut butter and simply fruit (instead of Welches grape jam with all the corn sweetner, thanks to you guys) crackers- which he refuses to eat without MILK. So running out of milk and eliminating the other dairy means just about starving him to death. As I mentioned in a previous post, he has started baseball again for the season, and it's hard to see him go to school without his breakfast drink, and go all day and then run laps etc. at warm ups and games, with eating nothing, I literally don't see how he could hold up. Also another concern is when I had his blood work done, his calcium and magnesium were both at the high end of normal. If I remove the dairy, I'm sure these levels will fall. I can supplement, and will, I guess I felt that was a plus with all of the dairy, I didn't have to supplement the mag/ and calcium

 

Marie had really wonderful results with juicing carrots and spinach, but mine would'nt even sit in the same room with a glass of the stuff. Once school is out, I may just try removal and offer fruit and peanut butter and tough out eliminating dairy.

 

Claire, I would love to try enzymes that could help avoid elimination, however I know NOTHING about them. Would they be safe to try without supervison of a Dr. short term? Could you explain the sentence "I have personally noticed the Zyme Prime with milk and carrots the same day"? Sorry to be asking these questions of you, and I'll certainly understand if you can't reply. Also, I had remembered from a previous post of yours that zinc given by itself at bedtime was a good idea and that is what I plan to try.

 

Thanks a ton as always

 

Kim

[Claire]

Ah Kim,

 

So sorry about the confusion with Alison's post right above yours. I was sooo tired this morning (can't figure out why) that I posted that and slept for 1.5 hours cuz I couldn't keep my eyes open.

 

Oh, I get it re Milk now, he won't eat without milk. I understand how these kids can be--I have one! Enzymes are definitely worth trying.

 

Enzymes are the one of two things that I personally think can be done without a doctor's supervisions (the other is a good probiotic)--and if you read my posts I have disclaimers all over the place that I suggest a doctor's supervision for supplementing about normal daily allowances of vitamins.

 

Well, I was trying to be polite and vague, but raw carrots (not the fresh juice) give me the big D (without enzymes) and milk gives me gas (without enzymes, presumably lactose intolerance). I must have tried both 15 times with and without enzymes to really prove it (since I am the one who suffers).

 

But as a parent, I would suggest you get a couple more opinions beyond me: The woman Karen DeFelice who wrote a book on Enzymes posts on this site. http://health.groups.yahoo.com/group/enzymesandautism/

 

I would post to her and ask her opinion. I would ask if you give it every time he has milk--all those details. In fact, I would go through that site (you are good at research) and read lots of people's experience with them. Most, but not all, use Houston Nutriceuticals. Pfeiffer says that brand has the best success. Dr. Houston is called the father of enzymes by some--he has been doing this so long and used to do it at Klaire Labs.

 

I would also call Houston Nutr (who sell them) (866) 757-8627 and ask them the same questions--Trish there (Dr. Houston's wife) is great about answering any and all paranoid and/or intricate questions. Our DAN doctor said they could do no harm.

 

 

However, you need to start slowly----just to make sure your child doesn't have a reaction (e.g. stomach aches). And start with one enzyme for a time (I think it is 2 weeks).

 

I get my son to have juice by saying he gets a little (soy) ice cream afterwards. No veggies, no dessert. I give the carrot juice plain--as the sweet touch to wash down the broccoli juice. A little fresh squeeze apple juice in the broccoli juice never helped him like it, though I liked it myself. But if your child won't eat it, you can't force it.

 

Kim, my son had a calcium deficiency when he was drinking milk. Now that I dropped the milk completely and give the RDA of calcium, he is normal again.

 

Good luck!

Claire

[ad_ccl]

Hi Kim,

 

Just wanted to add that my son tested low on Calcium as well, despite drinking 6 glasses of milk a day and having a diet that essentially only consisted of dairy - cheese strings, minigos, ice cream. He had such a limited diet that I had the same concerns as you about removing the foods. I continue to be AMAZED at how his eating has improved since being off gluten and dairy. He would not eat meat before and now tries everything we are eating, he is also eating home made veg, soup that I puree and put lots of veggies in. This was a kid who ate NO veggies and only happy meal hamburgers for meat. I know the worry though of sending them off to school without proper nutrition. I would not let my son stay for lunches for most of this year as he would not eat his lunch - he is currently staying every day as he loves playing sports at lunch - every day his lunch bag comes back empty or close to it. My middle son also has a very limited diet and eats no meat at all as well, and only corn for veggies, He is off the foods as well and slowly he is starting to try some new foods, I was hoping for the miracle change in eating habits we saw with my older son - but it seems to be more slow going. I was even considering adding back the gluten for him to add to his diet, as his behaviour was worse off the foods due to not eating enough. I am glad I held off as his behaviour is fine again and there are several changes I have seen since being off the food which includes not grazing all day long on the same dry cereal, not pooping 4 times a day, and he seems to be having a growth spurt. I think that off the foods he is absorbing more so although eating less in quantity he is getting more quality.

 

I know how hard this all is, remember how worth it it is. One day you will look back and it will be part of your past. I am still amazed how far we have come and what a good path we went down. At the time it seemed like an eternity, and every day that things were not better were so heartbreaking, it has been 8 months and now it seems in so many ways it flew by. So much good has come from this journey, not just for my son but for the family as a whole.

[Andy]

Soy is one of the foods my son can not eat due to food allegies. However, I would be careful with any soy product that I would have had in my house if he wasn't. Soy is a wonder source of protein and can be used for so many things. However, I what I read over the years about some of the ways soy is being processed and played with chemically with its uses is concerning to say the least.

 

ad_ccl, I am glad to hear of your progess. I am a big fan of the food elimation diet.

I think it was around 25% of the solution that we are seeking.