Supplement Help Needed

[thomasmom]

Hello.....my ds9 has been suffering from horrible tics lately. (his history - dx'd with PANDAS 3 years ago. Gotten IVIG twice the last being end of January 2010. Was symptom free until June 21 when he lost 2 teeth. 24 hours big time tics that calmed down after we upped his Augmentin to 500 mg BID and then clamed down furthur after we reached 875 mg BID for a month. That ended in August and after he returned to school the tics really flared )

 

My question.....I started him on the Bontech TS support supplements 2 weeks ago and I have seen no improvement. I am getting nervous about continuing because the daily% of some of the B vitamins seems really high. (2,500% to 3,333 %) Anybody else use this supplement ?

[swim]

Sorry I can't help with the supplement, but I have another observation to share. We have tried over and over again to find a supplement for our son (almost 12 yrs old, dealing with PANDAS symptoms for 7 years). Everytime we try a supplement to get him calcium, mag, B vitamins, etc, his symptoms seem to increase. Thought it might just be coincidence, but it has happened too many times now. Feel crazy, but I think we are reaching the conclusion that additional vitamins actually increase his symptoms. Wonder if anyone else sees a similar patter ... I know every situation is a bit different.

[Stephanie2]

Don't be concerned about B vitamins...these are water soluble, whatever the body does not use will come out in the pee (hence the bright yellow pee). Even at 3000% RDA, no concern (plus, keep in mind that RDA's are set to keep a person from becoming completely deficient in the nutrient, not to guide the person to optimal or therapeutic dosages, which are usually much greater than the RDA).

 

Also, Swim, some supplements can be "stimulating" (including calcium). As far as magnesium, I have been advised by our DAN doctor that as far as tics and hyperactivity goes, mag glycinate is the most "calming".

[NancyD]

My DD cannot take B, calcium, or magnesium either. They have always made her symptoms worse. She is extremely sensitive. Same with most probiotics. But she can take A, D3,E, Omega 3, bifido factor, quercitin, transfer factor, NAC, milk thistle, and digestive enzymes. I also think she may have a problem with C. I always make sure the supplements are pure and nothing in it that she could be sensitive to. Never a multi vitamin. It's taken me years of trying so many different supplements (and oh so slowly) to figure out what she can and cannot take.

 

 

Sorry I can't help with the supplement, but I have another observation to share. We have tried over and over again to find a supplement for our son (almost 12 yrs old, dealing with PANDAS symptoms for 7 years). Everytime we try a supplement to get him calcium, mag, B vitamins, etc, his symptoms seem to increase. Thought it might just be coincidence, but it has happened too many times now. Feel crazy, but I think we are reaching the conclusion that additional vitamins actually increase his symptoms. Wonder if anyone else sees a similar patter ... I know every situation is a bit different.

[philamom]

Sorry I can't help with the supplement, but I have another observation to share. We have tried over and over again to find a supplement for our son (almost 12 yrs old, dealing with PANDAS symptoms for 7 years). Everytime we try a supplement to get him calcium, mag, B vitamins, etc, his symptoms seem to increase. Thought it might just be coincidence, but it has happened too many times now. Feel crazy, but I think we are reaching the conclusion that additional vitamins actually increase his symptoms. Wonder if anyone else sees a similar patter ... I know every situation is a bit different.

My daughter is the same way. She seems to react to every vitamin/supplement we give her. She's recently been diagnosed with lyme, so I'm thinking it might be some sort of herx reaction. hmmm?

[Fixit]

Don't be concerned about B vitamins...these are water soluble, whatever the body does not use will come out in the pee (hence the bright yellow pee). Even at 3000% RDA, no concern (plus, keep in mind that RDA's are set to keep a person from becoming completely deficient in the nutrient, not to guide the person to optimal or therapeutic dosages, which are usually much greater than the RDA).

 

Also, Swim, some supplements can be "stimulating" (including calcium). As far as magnesium, I have been advised by our DAN doctor that as far as tics and hyperactivity goes, mag glycinate is the most "calming".

 

yes, but i've heard that b's can be stimulating also....even if they do leave the body quickly....

maybe lower the b dose...

on a thread about glutithione....purpple is taking cere(someomthing) with nac 600mg and some b's but only about 7mg all together.....(for moond, memory etc)

 

i've wondered the same thing about the vitamins!!!!1

[amyjoy]

I can tell you what has helped my son's tics tremendously since the terrible rebound from steroid burst, they were the worst they had been in so long when the pred wore off and i was terrified. we do all of them every day, i can't tell you the difference since the minute we started. he is also 14, 6ft1 and neraly 200 lbs.

 

Avipaxin - anti-cytokine in the brain supplement - 2 in the am only 9from neuroscience)

inflamaway from natura - 2 twice a day

Myo-calm from metagenics 3 in the evening

mag glysinate - 600mg

and the last thing we added has so helped, a chinese herbal formula reco'd by the herbal person in Dr. S's office called "Coptis Purge Heat".

 

we are in the process of raising the funds for DS's IVIG, in the meantime, i think this combo is helping more than anything we've ever tried, although he still finds his way into the motrin bottle, that does also help at night but i'm so trying to get him out of that habit, i know its not good, but the tics are just relentless aren't they??? i hate them!!!!!

[justinekno]

Our dr told us if magnesium is low in the body then calcium will further aggrivate the tics. He had us supplement with magnesium for a few months before adding calcium. Have you had your son's levels checked? We did this prior to starting any supplements and it was very helpful.

 

Sorry I can't help with the supplement, but I have another observation to share. We have tried over and over again to find a supplement for our son (almost 12 yrs old, dealing with PANDAS symptoms for 7 years). Everytime we try a supplement to get him calcium, mag, B vitamins, etc, his symptoms seem to increase. Thought it might just be coincidence, but it has happened too many times now. Feel crazy, but I think we are reaching the conclusion that additional vitamins actually increase his symptoms. Wonder if anyone else sees a similar patter ... I know every situation is a bit different.