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Need help with supplement confusion


faith

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Hi all,

I could just use a little help. I'm just trying to brainstorm a little. I'm going over some notes and diary for when my son started different supps, etc. My feeling has been that during last two months things are not getting any better, quite the opposite. So I'm feeling maybe I could find a culprit somewhere.

 

Chemar, you mentioned B6 being a little high (when you thought it was 200 mg.) so I'm just wondering if anything in his multi might be not compatible with him. His last multi given by DAN doc had 100 mg. of P5P and the nu-thera has 50 mg. (taking since end of Dec 27). I did note that weekend of 30th and 31st, he had very minimal tics. But it didn't last. My thoughts are along the line of maybe the reduction of b6 was good for him initially, but after a while even the 50 mg. is not so great for him. I'm really just fishing. Any thoughts are welcome.

 

Things I am also suspicious of are the folinic acid. There is 400 mcg. in the nu-thera, and he also gets a 1 mg. tablet given separately as an adjunct to the methylb12 shots. Maybe that's too much?

Anyone? (these DAN docs seem to LOVE folinic acid!)

 

Other suspicions are manganese. It has 1500 mgcs. (the previous multi had 2 mg.) (and I was also supposed to give a little from his mineral kit given by naturo. (the vits are from DAN doc.) And the mineral kit also has copper (none in multis)

 

These are all just my own concerns. Something has to be there. I would appreciate any input or experiences from all of you. When I started with the DAN doc, he only had a small vocal, but is now moving on the blinks and head nods. All this supplementation and worse? Something is wrong.

 

I mention these particular items because I am reading back over some notes and posts that I keep, like one from Claire that had info on "undermethylators" and vits not good for them. (Claire, are you still out there?!) There was some contoversy about folic acid, B12, choline, DMAE, and copper not being good for that. (I think it was som link from Dr. Walsh. (I havn't figured out how to post access to another link yet).

 

Just because many of things are good for autistic spectrum doesn't mean it is good for children with tics. Please help me figure this out. Anyone? :wub:

 

Huge thanks

Faith

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faith,

 

I don't think I can help you understand, but my son seemed to get worse after he was given supplements by Trace Nutrients. This is the company who tested for heavy medal. I started him on the vit. they sent and he started to tic worse. He was to take 7 different formulas. Copper with vit B2 was one, mag with vit B6 was another one. His test came up very high in chromium, and vanadium was off the chart. low arsnic. Anyway I couldn't understand why they sent a GT formula with chromium when it was so high. Between all the formulas he was getting 105 mg of B6. I just thought this was not working for him although I didn't know why. I guess they send the things my son needed, but I feel it was not helpful for the TS. The only formula he is taking out of all they sent is the vit.E with selenium. I just liked that one and he said it tastes like oreo cookies.

Not that I was any help, but I just think we had the same thought about the vit. not being compatable.

 

C.P.

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hi Faith

 

100mg of B6 is what is usually recommended but I find my son does better on 50mg twice a day than 100mg altogether

 

He cannot take vitB12 other than in his multi and in the sublingual B liquid complex...if he takes a B12 capsule he tics more. He also cannot handle any extra niacin or folic acid

 

this is why it is so important to supplement according to the individual needs. However, reading your posts, it sure seems like you have been thru all the tests. Have they done a Spectracell analysis of his vits too?

 

Do remember that there is often a period of slight worsening before getting better for some people when they first start a supplement program. This frequently happens to folks using Bonnie's TS-Plus, but then the majority seem to adjust and show really good results. Some dont tho and so have to try different combos and doses.

 

Another reason why I feel supps should always be added very gradually (minimal dose and one at a time) and in phases so that one can keep a record and therefore have a clearer picture when a specific one is causing a tic increase.

 

dont know if I have helped or confused you even more :wub: but those are my thoughts on it.

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Along the same line. I was wondering where or what kind of probiotics everyone uses. I am not sure how much a child along the age of 11 should have. I read one post that said it should be in the billions, but most of what I am finding is only in the millions. So what brand do you all use. Also interested in monolaurin, but don't plan on starting that for a while. Only one thing at at time. We started Natural calm several days ago, and will start probiotics next week or two. So far I have not seen alot of change with the natural calm from my PANDAS son but we are still on the lower dose. Funny thing is, my middle son, who has problems sleeping and makes strange "sucking" noises in his throat during the night, has started sleeping wonderfully quiet. I have the whole family on it, myself included. Hey cant hurt. We all need a little calm right now.

 

So any suggestions on probiotics or anything else welcome. Thanks and hope everyone has a great week!

 

Dedee

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Okay, this is helping a little. If others are having experiences not doing well on b vitamins, maybe I'm onto something. Every little bit helps, believe me.

 

My little one is almost 8 and only weighs 41 lbs. (47" tall). Does anyone have the opinion that perhaps all these vits are just too much for his little system? Maybe his immune system is being overstimulated? My feeling right now is about the folic acid, I've been reading my notes and posts that I've printed and folic acid seems to be something to watch for. Someone mentioned that Bonnie's vits contain that and some didn't think it was good for thier child. Any thoughts?

 

I'm going to withdraw for a day, and then start over. Also, I have DAN doc appt tomorrow, its just our monthly visit, I really don't know what to ask about. I'm going to talk about the methylb12 shots and folinic acid questions I have, and I'm seriously thinking about stopping for a time and see what happens. I really have not seen any improvement, in any way. Chemar, when you say your son doesn't do well on the B12, did you mean with more ticcing? Honestly, 10 days after we started the B12, is when he started the blinking (before it was a soft vocal sound). But I did stop the B12 for about two weeks when I saw that and it wasn't like it all went away, so I don't know there. Does anyone have any ideas/knowledge of like how long it would take to get stuff out of system--I always thought it was about four days. O gosh, I am running in circles here. But I'm gonna keep going. If anyone else has any experience with adverse affects of vits, please share.

 

(Deedee, the probiotic we use is also Klaire Labs, probiotic comples, 10 bil. powder form and must be refrigerated)

 

(Also, Kim, just to tell you once when I was in hospital with a montesuma's revenge sort of thing, I was on antibiotics (IV) and my doctor did tell me to take acidpholis with the antibiotics I was given. And by the way, the doctor ws the physicians assistant to my primary care physician. Maybe the newer ones are starting to get up on these things!)

 

Regards all and thanks

Faith

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Faith,

 

My doctor has told me to stop a supplement for about a week if thinking there's a reaction going on. My understanding with the methyl-b12 shots is that if your injecting into the fat, the methyl-b12 leaches into the body over a period of 3 days. However, if your injecting into the muscle like you've described the methyl-b12 corrects any deficiency, but then is eliminated right away through the urine.

 

Did you also stop the folinic acid when stopping the Methyl-B12 for 2 weeks? Two weeks should have been plenty of time to see a difference. Did you by any chance start the folinic acid at the same time that your started the methyl-b12 shots? I know Dr. Neubrander doesn't recommend starting folinic or folic acid until atleast five weeks after starting the methyl-b12 shots.

 

Carolyn

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Thanks all for the referral on Probiotics. Do you know if you get the powder form if it can be mixed with milk? Sorry to be so full of questions, just don't want to waste my money if I can't get it down them. My three year old daugher is on daily antibiotics also for a kidney disorder, so I thought she could benefit as well and it is very hard to get her to drink anything unless I disguise it in milk. Thanks again and have a good day.

 

Dedee

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Yes, I'm sure that would be okay. The dose is only 1/4 tsp. so you can sprinkle it in fruit juice too. That is what I do. Just use a small amount of juice so as to be sure she drinks the whole product.

(My pro-biotic complex says 10 bil. , if you want more just do twice a day.

 

Carolyn,

yes, I did stop that folinic acid too when I stopped the B12 but I see there was still 400 mcg. of folinic in his multi. (and 100 mg. of B6). As to the intramuscular vs. sub, I guess I have to ask doc about that today, however my feeling is that it may not matter for us, because we just need it to correct the methylation pathway, whereas the other way may be more important for the autistic children and the issues they use that for.

 

Chemar,

We have not had any vit. testing, just the metals and food sensitivity. I hope at the follow up visit this week I will get some things clarified. I think its a 1/2 hour visit (I hope) and hope I will be able to address all my concerns in that time. I really need alot of clarification and explanation, I'm not comfortable otherwise.

 

Kim, could you please tell me if you still use Houston enzymes and your experience with that?

 

Thanks all

Faith

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Faith and All/PANDAS Mom's too,

 

I have repeatedly found much of Dr. Amy Yasko's research/approach to treatment of neuro. conditions, to make so much sense. I am also fascinated and hopeful, that the genetic testing that some are finding beneficial will provide help for TS/PANDA/PITANDS families too.

 

Faith, this might pertain to your son, and give PANDAS Mom's some info. too

 

First, this is an excerpt from another article that Chemar posted, not long ago.

 

http://au.geocities.com/jones_kacm/chem.htm

 

 

Dr Comings(1990,1991) went further to find that there is a problem in the Tryptophan to 5HT to serotonin pathway in Touretters. Instead of turning 10% of our dietary tryptophan into serotonin we only use 0 - 4%. This means our serotonin production is very low and our kynurenine levels are high.

 

Oh crud!

"our kynurenine levels are high"

In 2001 I couldn't find out what this implied.

By 2004 I still had no idea.

Now I know.

It's not nice.

 

I always guessed kynurenine was somewhat toxic...after all, it does have the word "urine" in it and that's one of the body's most toxic wastes. But recent research seems to show that where you find high levels of kynurenine, you find brain damage. Most of the research has been done on HIV patients (HIV causes the higher levels of kynurenine), but there have also been studies that show kynurenine inhibitors (things that stop more of it being made) can reduce the risk of Alzheimer's disease, inflammatory brain conditions, and dementia.

Wow. Aren't you glad I found that out!

Now these are a few excerpts from a post by Dr. Amy;

 

 

http://www.autismanswer.com/forum/viewtopic.php?t=2938

 

Chronic bacterial infection and its effects on tryptophan breakdown are part of the reason why I suggest only low levels of P5P for individuals with chronic bacterial issues and CBS up regulations. P5P also helps to push the CBS reaction as well as to aid in the conversion of kynurenic to quinolinic The kynurenic that is generated via the breakdown of tryptophan by bacterial infection is calming; however P5P helps to convert it to quinolinic which is excitatory.

 

and

 

Kynurenate is part of the breakdown pathway for tryptophan. As the body breaks down tryptophan for this purpose it will also deplete serotonin. Lack of serotonin combined with streptococcal infection can lead to perseverative and OCD behaviors in addition to other effects.
and

 

In some cases I have not found that the use of high dose B6 or P5P is always helpful. It can actually cause more overstimulatory or OCD type behaviors. While kynurenic acid is calming for neurotransmitters, the product that kynurenines are converted to by B6 is quinolinic acid. Quinolinic acid is an excitotoxin. So if you have high kynurenine and add B6 you can generate quinolinic acid which acts as an excitotoxin and can aggravate the nervous system. Increased levels of quinolinic acid have been implicated in Alzheimer’s disease as well as with respect to excitotoxin damage of nerves.

 

I want to add, that my boys had a very hyper reaction to vit. B.

 

I gave my youngest son, straight vit B as a very first supplement (along with 2 others). His facial tics, did decrease, but he was hyper to the point, that he was even laughing about it.

 

My oldest son's heart beat, got rapid, when we got up to about 12 of Bonnie's vitamins. He could not tolerate any more than about 12. Maybe they would tolerate more now, not sure, as we haven't tried.

 

Anyway, there is some really good info. on this group, and things that you might find useful Faith, since your Dr. is into the genetic testing, and probably uses therapies along the same line as Dr. Yasko.

 

It's probably impossible for any ONE Dr. to know, or take into consideration all of the complexities of these treatments.

I think it's great that you're learning all you can, to help provide him with the best information on things you are observing with your son. This kynurenine/kynurenic acid, may be useful for all of us to keep in mind, and watch for the effects of, since it seems to be, somewhat TS specific.

 

One of our Posters (Dominique/Dee), recently took her son to a Dr. that follows the Yasko protocols for PANDAS. I got a really wonderful voice mail from her, last night, with an update. It sounds like her son is doing wonderful, following his tonsil removal.

Much of the information that Dee shared with me (use of probiotics, herbs, minerals etc.) can be found on the autism autisminfo. forum. Part of Yasko's strep protocol has to do with removing aluminum from the body, which she feels makes strep matters worse.

 

If anyone decides to join, I hope you bring things that you find interesting or helpful back here. There is a lot of PANDAS info. as well as idea's on gut healing.

 

Hope this can help someone else, find a puzzel piece!

 

Kim

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Kim, thank you a bunch. I love that info. I feel like there is something in that, but I have to admit, I'm all over it trying to see where it fits in and am not getting anywhere fast. It's interesting about the folic acid/B6 that is mentioned but I'm not sure what it really means. The part about one thing having a calming effect vs. an excititory effect? What's your take on that? How does one achieve the calming effect? Does this only pertain to the chronic bacterial infections as they mention.?

 

Has anyone here used tryptophan with any success?

 

Faith

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Tryptophan isn't on the market anymore, but people can get 5-HTP. Chemar's had good success with 5-HTP for her son. Based on test results, I'm supposed to start on 5-HTP. That was like four months ago. I have a huge fear of trying 5-HTP because of the way I reacted to antidepressants as a child. I'm not for sure whether I'll try it before my March appt. or end up going back explaining that I'm afraid to try it.

 

Carolyn

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Faith,

 

I found the statement about bacteria increasing the breakdown of tryptophan confusing too.

 

I can see where it applies to PANDAS without a problem, but this does seem to raise more questions than it answers, in regards to TS.

 

If Dr. Comings found high kynurenine levels in patients with TS (would like to find that, and see how many people were studied) then it seems to me, that this would apply regardless. I guess the question is, are the kynurenine levels elevated in TS for a different reason or not (presence of bacteria)?

 

I think the thing that is really important here, is to closely observe the effects any particular supplement is having, and realize that the doses may have a lot of variables from individual to individual. The state of the body at the time the supplement is started can be important too, (condition of the gut) seems to me.

 

Kim

 

I"ll get back to you about the enzymes (yes we use them) and the 5HTP, when I have a little more time.

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