Confused!

[ccc]

I was wondering if anyone can help. My son has several issues with allergies, deficiencies and also positive fpr strep. How do you know what is causing the tics. Right now we started addressing the amino acids deficiencies. His tics got worse. He has been ticing non stop for over a week. They have now called in an antibiotic for the strep. Has anyone else experienced the non stop tics? Of all the thing that I have read that people have noticed that have been indicators for tics my son has almost all of them. Now I just wish I knew which one if any are making him tic. I really just want him to have a break and it is hard to see that coming anytime soon.

Thanks for any help!!!

[Chemar]

Hi

it isnt unusual for there to be multiple tic triggers

 

if you have strep +ve then that is definitely the most important to bring under control.

 

but simultaneously addressing the allergies and deficiencies is also important.

 

from our experience supplementing the deficiencies will work much better when other issues are also dealt with. nomatter how many supps you give, if strep and allergies are still impacting health, you will not see them working optimally until you treat for those

[faith]

ccc,

Hi,

I would be interested to know how you determined he has amino acid deficiences? Did you give him some amino acids and then he started ticcing more? Some of the aminos have seemed to increase tics in my son. Would you mind telling us what aminos you gave and how the tics progressed? thanks

 

Faith

[ilovedogs]

I was thinking of asking the same thing, Faith. With my son, the reaction to aminos can go either way. I just never know until I try it!

 

B

[Chemar]

some amino acids are dopaminergic and so can cause increased tics in people with TS

 

even those that usually help with tics (eg taurine, carnitine) can sometimes have the opposite effect in some people so it is always wise to introduce them one at a time and very slowly

 

there is more info on amino acids on Bonnie's site www.bonniegr.com

[ccc]

We did the Organix Comprehensive urine test. It came back showing he was low in B1, B2, B3, B5, Vit D, Vanilmandelate, Homovanillate, 5-hydroxyindoleacetate. Amino acids were

Lysine, Serine, Taurine, aspartic acid, Citrulline, Glutamic acid, Glutamine and Ornithine. He was very high in two detoxificaction indicators: sulfate and 2-methylhippurate. also high levels of two bacteria Phenylacetate and p-Hydroxybenzoate. I feel like I need a medical degree to understand all of this. His step level was on the high side but not that high for them to fist suspect it could be from the strep. As far as the amino acids go we ordered from a company that makes a special blend for each individual. So it is formulated just for him.

 

The doctor we are using has been very supportive for us during this time. He is out of town for a few days but gave us his cell phone number if we have any problems. I can't say alot of doctors would do that. So I trust them completely but they have told us this will be a long road. We just were trying to find something to help break the cycle. He did tell us to try GABA and also phosphatidylserine to see if that helps. Has anyone used these before?

[faith]

ccc,

if you could clarify something please,

you say the amino acids are a combination of those he seemed deficient in and it was formulated according to the tests? how long has he been taking it, and do you note when the tics seemed to increase? was it a day or two after or some weeks? Also, what tics were increased, his usual tics, or did he start something new?

I am not sure which of those aminos are inhibitory and which are excitetory (sp?) but my feeling is that even those that are considered inhibiory may not agree with someone. My son seems to have had increase with trying taurine, carnitine, tryptophan and recently N-acetyl-cysteine. I don't know really what to advise, except that it does seem individual, so you have two choices, one is to stop the amino blend and see what happens (altho it could take more than a week for him to settle down) or you could ride it out and see if it is an initial reaction (sort of a gets worse before it gets better), altho most of us here are not confident enough to continue when we see adverse effects.

 

Faith

[ilovedogs]

We did the Organix Comprehensive urine test. It came back showing he was low in B1, B2, B3, B5, Vit D, Vanilmandelate, Homovanillate, 5-hydroxyindoleacetate. Amino acids were

Lysine, Serine, Taurine, aspartic acid, Citrulline, Glutamic acid, Glutamine and Ornithine. He was very high in two detoxificaction indicators: sulfate and 2-methylhippurate. also high levels of two bacteria Phenylacetate and p-Hydroxybenzoate. I feel like I need a medical degree to understand all of this. His step level was on the high side but not that high for them to fist suspect it could be from the strep. As far as the amino acids go we ordered from a company that makes a special blend for each individual. So it is formulated just for him.

 

The doctor we are using has been very supportive for us during this time. He is out of town for a few days but gave us his cell phone number if we have any problems. I can't say alot of doctors would do that. So I trust them completely but they have told us this will be a long road. We just were trying to find something to help break the cycle. He did tell us to try GABA and also phosphatidylserine to see if that helps. Has anyone used these before?

We have our son on phosphatidylserene, too. I know that Carolyn N has had her son on it for quite some time. I can't say that I've seen any plus or minus from the PS100 but I will keep giving it b/c it's supposed to be a HUGE help in brain function. It's too bad that it's quite expensive, though.

 

B

[kim]

ccc,

 

It is not unusual for sulfate to be wasted in the urine. Read thru the comments at the bottom of this thread. The top part has been posted here before (long PST article). I haven't read all of the comments, but think you might find some good info there. The comments are about 2/3 of the way down the page, right below the blue disclaimer box. Just click on them.

 

http://www.curezone.org/forums/fm.asp?i=1405385

 

 

Faith, if you're reading, I'm soooo sorry i haven't replied to our conversation on the other thread. I've had so little time. Will try to get back to that soon, altho i son't really have any great idea's that you haven't touched on yourself already!

[ccc]

No new tic just manily all vocal. He has 3 or 4 different ones at the same time and more often. When we first gave him the amino acids he developed head aches. He was on them for 5 days. Doctor took him off when he got headaches and stand off for 4 days. He was still ticing gut had some eye blinks with vocals. I would say on a scale of 1 to 10 they were about a 5-6. We introduced him back on the amino acids but at a very low dose. He only took them for 2 days and symptoms got worse. He has been off for 5 days now and tics are still bad. Dr. feels it is important for him to get back on the amino acids as he feels this is 60% of the puzzle. I would have thought if it was the aminos he would have calmied down by now.

[faith]

I felt too that stopping the supplement would help in a few days, but my experience has been thing don't calm right away. the times we had an increase and I stopped the supplement, he would still be ticcing (also vocal) about a week later, so it seemed it took more like 7-10 days to subside. Perhaps drinking as much water as possible and taking epsom salts baths might help get it out of the system faster.

 

Let us know how things go.

 

Faith

[ccc]

We he woke up today and I was hoping to hear no sounds but no such luck. I am so worried to send him to school. He is doing the dip hiccup, gulp and cough. Then the sniff with a snort. I feel like I am losing my mind. I know there is no quick fix. I just needed to come and vent this morning. Please pray he will have a good day at school.

Thanks

[faith]

ccc,

I am praying for you, and all of us. I know just how you are feeling, waking up and hoping its a better day. I have often worried about my son in school, but thankfully, his noises seem to just be white noise in his classroom, the teacher has said no one really says anything, and you might be surprised to find that he is able to hold back somewhat in the classroom, I'm sure they do it more obviously at home because they are in their comfort zone to let it out. Those sounds you describe sound like natural noises we all make, so it may not be as noticed as you think. have you tried epsom baths?, you may notice he is calmer in the bath and it may carry forward till morning.

 

Blessings,

Faith