A question about TS and Allergies

[Guest Guest_GINA]

Hi All,

 

I have a question about tics and allergies. It seems like quite a lot of the children here end up having an allergy to one thing or another. My question is, Are there kids that have been diagnosed with TS (from a hereditary link) that show these allergies or is it that some children seem to have some form of tics due to the allergic reaction and not necessarily TS.

 

The reason I am asking is that I am still in the process of finding a Dr. and am playing DR. Mom. My son has been diagnosed with TS. We know it is in the family so it is hereditary. I would rather not put my son through some of this if its not necessary. I have changed his diet as far as taking out things that are articficial, loaded with preservatives, and try to stay organic. I do believe that all the chemicals that are put into our food definitly affect the brain (not necessarily an allergic reaction)

 

Thank You

Gina

[Chemar]

Hi Gina

 

We have hereditary TS .........my son, my husband and his dad (our oldest son has shown no signs of it, and is almost 18)

 

we do also have some allergies.....mostly environmental and some foods....these run on both sides of the family and manifest in the non-ts members too.

 

HTH

 

How are things going with your son?

Did you get my email re the doctors??

[Guest Guest]

Hi Chemar,

 

Thanks for the info...

 

I did not recieve your e-mail about Dr's. My husband was messing with the computor last week and who knows what he did..... Please resend me the e-mail. I am still tring to find a Dr. I got a lead from Claire but the Dr. hasn't returned my calls so I will just keep bugging him. My son (Dan) is doing pretty good. His tics have been mellowing out latley.

 

I was told that vitamin B's are supposed to be good for the tics. Do you have any opinion/info about that?

 

Thank You

Gina

[Chemar]

Hi Gina

 

yes, vit Bs are excellent for tics

my son specifically needed extra

Vit B6,B1 and also B5

tho they are all important!

 

Some people dont handle taking a B complex supplement well.....like our family....and so it is ok to take a high B multivitamin and then add extra of the Bs specifically needed. Generally, B6(with zinc) and B1 have good reports on helping with tics ......especially in those with pyroluria.........and B5 is excellent for tooth/jaw tics

 

I lost a lot of email stuff when my computer crashed, but thankfully had some backed up so I will try to find that email re the docs

 

did you check on those lists that Sheila provided

http://www.latitudes.org/forums/index.php?...p?showtopic=517

 

so glad things are going better for your son

[Guest Guest_efgh]

Chemar

 

thanks for the details. wanted to share with you this.. I started my son on fish oil and B complex supplement two weeks back apart from the multivit, zinc, calcium , magnesium that he has been taking for 3 months.. His tics increased and so I stopped fish oil and restarted flax oil since I assumed fish oil was the culprit - he seemed better after the removal of fish oil but still was more irritable , moody and kind of wired. It did not occur to me that it could be due to the B complex.. I tried stopping the B complex and he seems back to his normal self again. Don't know if its a coincidence. what is your advice or suggestion on this.. Can you think of any reason as to why the B complex with Vit C (that B complex supplement contains Vitamin C 250 mg of Ascorbic acid too) may aggravate restlessness, anxiety etc when actually it should be doing the reverse!

would await all your replies on this.

[Guest Guest_efgh]

Chemar, In addition to my above post - I remembered one more question ..

 

How do you add extra B's to your son. Do you get it separately in the drug stores - like "only B 6, or B 1"?? I seem to get the B complex supplement as such and not the individual ones. Which company and brand do you use?

 

thanks.

[Chemar]

Hi efgh

 

I have no idea why B Complex seems to negatively impact some people but I have enough anecdotal evidence to support my view that this is a faily common occurrance!!

 

Yet, these same people can take a multivit with all those Bs in it, or take the individual Bs separately, and not have any problems!

 

Yes, I buy the individual B supplements over the counter......some are out on the shelf, and some (like B1) are ones you need to request at the counter

 

We started my son on the extra Vitamin B1(thiamin) when he went on that mission trip to Nicaragua....apparantly VitB1 stops mosquitoes from biting......anyway, he noted a dramatic decrease in his tics while on the B1 and I have subsequently found information from folks at brainTalk that agree on B1 reducing tics.

[Guest Guest_efgh]

Chemar, what is the brand of B1 that you give? what about B6, b12 brands ...suprising that a simple B complex supplement can increase tics

 

Chemar, reg. biofeedback , do they use something like a pendulum and does it involve negative and positive charges to detect allergic food substances??

I came across a good doctor on this and hence wanted to clarify on this from you about the basic procedure, purpose of biofeedback and how EXACTLy it may help tics, etc before starting this..

thanks in advance.

[Chemar]

efgh

 

the B1 I get is made by MAJOR and I have to ask for it at the pharmacy counter.

All my other Bs are by Rexall, except the B5 which is from TwinLab

 

The interesting thing is that the Bcomplex affects some people in a variety of ways.....in my case......I get very "spacey" and digestive problems(it seems to halt me!!) whereas my son gets restless, anxious and ticcy as well as the digestive problems.......also my husband feels "unwell" on it.......we have tried enough different brands for me to know it is not the brand doing this!!

 

As to the biofeedback......our therapist has travelled abroad to Germany and has the latest machines and training available for this.......he has never used a pendulum tho. It involves placing the electrodes and taking readings from the areas of concern and then he reverses the energy field and leaves the electrodes in place for whatever length of time he deems necessary. I believe it is also known as resonance therapy. He also works in conjunction with a radiogenics expert who does dermal readings. It was truly uncanny how the radiogenics readings matched the bloodwork and hair analysis results that we had done to verify everything!

 

A 90 minute session of acupuncture, biofeedback plus reflexology costs us $85.

[Guest Robin O]

Chemar, you mentioned that B5 may help with jaw/teeth tics. My son has been opening his mounth and pushing out his lips. Do you think the extra B-5 would help this? my son is on Bonnie's supplement program and I give him extra B-1 for eye tics. Any thoughts or links I can go to on the B-5.

 

I know you unse the Bee pollen supplemetns and they contains the B vitamins. Do you know if they contain the B-5 vits. Thanks, Robin.

[Chemar]

Hi Robin

 

I really dont know.....we strted the B5 because he was clenching his jaw and grinding and banging teeth together in a tic.....the doc recommended it as it is known to help bruxism and it worked wonderfully.

 

I dont give bee pollen but DO give Royal Jelly produced by queen bees and it is rich in all nutrients....specifically the B vitamins. once my son's tooth/jaw tics wer stabilised, the doc suggested the Royal Jelly instead of the pure pantothenic acid.

[Guest Robin O]

Thanks Chemar. I remember now you had said previously it was Royal Jelly,

I think I might try a low dose of the B-5 ( and check with his Dr.) His mouth opening tic seems to really up his anxiety levels. Thanks, Robin

[Guest Guest_Gina]

Chemar,

 

I wish I would have read this earlier!!! I just got back from Whole Foods and bought the B-Complex to try with my son. I guess I will return the complex and just get the individual B's (at least I hadn't given any to him yet) Talk about timing.

 

Now can you help me with figuring out dosages of these (B1, B5, B6) and what about B12? This one is listed on the B-complex vitamin (B5, B1 were not). Also I read that Pantothenic Acid is importatnt to give. This was in the B-complex vit. also. I am not sure what it is or does. I haven't had time to look it all up yet.

 

Thank You

Gina

[Chemar]

Gina

 

your child may be fine with the B complex......some people do seem to handle it...

I am surprised tho that they dont have B1(thiamine) in it??

 

Vit B6(pyridoxine) seems to be very important in TS, and is often combined with calcium/magnesium and zinc .

 

B5 IS Pantothenic Acid

 

Vit B12 is a really important one.......many VERY sick people, including those with chronic fatigue syndrome and some extremely serious illnesses have found great benefit from B12.

 

 

In terms of the extra ones to give (ie above the RDA).....this is VERY much determined by the child's specific needs

 

Bonnie's guidelines are good ones to follow here in terms of general Vt B supplementation for TS

[Guest Guest_efgh]

Chemar, thanks. kids are SO different! Can royal jelly simply replace the B complex. Can I give royal jelly instead of a b complex. Do you mean to say that you give SO many individual tablets for your son INSTEAD of a single B complex tablet? I heard that its important that we give all the B's so that the balance is not affected in general.

So, do you give a multivit and then B1, B6, B12 and B5. Is that enough? Is it ok if you dont give the other B's? and your B1, 6, 12 and 5 - do they just come as B6 or is it combined with some other mineral or vitamin?

 

thanks.