giulia

Hello! We saw Dr B last Monday, and he started on Prednisone and Zythromax on TUE. Tics are a bit better, OCD better at times, worse at other times. Very manageable. I will continued as prescribed by Dr B, he really seems to know what he is talking about. Take care Giulia

Hello everybody! I posted this in the PANDAS forum but I am also putting it here in hopes that somebody might have some positive/relevant feedback...... THANK YOU Hello! I am new to this forum, although I have been posting on the TS for some time. I had my DS tested at Dr Cunningham's lab and results place him in PANDAS range, as follows. However, I am not sure what I should do next, and how to interpret this. There is nobody locally that will take this seriously, I called a local ped. Neurologist and was told that he treats PANDAS with psyc. meds just like for regular TS..... not sure what to say about that. I assume I should be looking for a PANDAS expert out of town (I live in VA). Can anyone offer any suggestions? **THANK YOU** Kam Kinase 145 Anti-Lysoganglioside 2 hours patient 1280 normal range 80-320 Anti-Tubulin 2 hours patient 4000 normal range 250-1000 Anti-Dopamine 1 2 hours patient 2000 normal range 500-2000 Anti-Dopamine 2 2 hours patient 16000 normal range 2000-16000

Hello! I am new to this forum, although I have been posting on the TS for some time. I had my DS tested at Dr Cunningham's lab and results place him in PANDAS range, as follows. However, I am not sure what I should do next, and how to interpret this. There is nobody locally that will take this seriously, I called a local ped. Neurologist and was told that he treats PANDAS with psyc. meds just like for regular TS..... not sure what to say about that. I assume I should be looking for a PANDAS expert out of town (I live in VA). Can anyone offer any suggestions? **THANK YOU** Kam Kinase 145 Anti-Lysoganglioside 2 hours patient 1280 normal range 80-320 Anti-Tubulin 2 hours patient 4000 normal range 250-1000 Anti-Dopamine 1 2 hours patient 2000 normal range 500-2000 Anti-Dopamine 2 2 hours patient 16000 normal range 2000-16000

I do not understand why they use dyes in the US to mix antibiotics. I stock up when I am in Italy (I am from there but live in the USA) because they do not use dyes there. How nice! Not sure why it is much more expensive to formulate w/out dyes here, it makes no sense. Have you checked Canadian Pharmacies such as: www.trumedcanada.com ? or www.northwestpharmacy.com Good luck and take care! Giulia

Hello and welcome! Looks like everybody had some wonderful advice. Not sure if anybody mentioned, but it would money well spent to have him tested for allergies, not the traditional way, but rather with a test like ELISA/ACT (https://www.directlabs.com/OrderTests/tabid/55/language/en-US/Default.aspx). For us it was HUGE. We realized that the FLAXSEED OIL supp I was giving my DS was a MAJOR trigger. Plus some food items, additives, food colors, and chlorine. Particularly indoor pools are a major trigger for us. So basically doing a test like ELISA/ACT is a shortcut to figuring out things that he does not tolerate well, and that trigger a neurol. reaction. Once we figured this out, we started washing his nose out 2 times /day, and that helped further. Plus of course all the good supplements for which CHEMAR is the expert..... Good luck ! Giulia

So sorry to hear about your despair. Funny you mentioned your husband saying it's no big deal, while your inside is twisting and turning. The same thing, here, I cannot stop reading and trying to gain control of this. I also read Chemar's reply, which I found very helpful, in fact, I visited a blog for terminally ill children, and immediately felt like a big idiot for worrying SO MUCH. Nothing wrong with fighting to help your child, but yes, we should keep it in perspective, and remember that it could be much worse. Don't give up, keep reading, you will get better and better at managing this. I will pray for you, and all of us with very special children..... Giulia

Thank you, I will do some more investigating and I will let you know what I find. Meanwhile I have sent them your info (the treatment that has helped your son) Take care!

Dear CHEMAR, A father wrote to me from Italy, as I also post in the TS forum there. His DS is 17, and they have tried various meds throughout him growing up. They also tried MAG, VIT D. He is now going through extremely LOUD screams, and I suggested L-Carnitine, but I was hoping you could give me some pointers to pass on to him. He has been diagnosed with TS about 10 years ago, things were up and down, acupuncture apparently did not work either, but now things are worse than ever. No high power prescribed med works any longer. He is looking to get allergy tested ASAP. I would appreciate any info you might be able to share as I know your DS is older as well. My DS is 8, and things seem to work well and quickly with him, but I am not sure how older boys react. **THANK YOU** Giulia

Hello I was just wondering if you all are giving your kids (with tics) flu shots or not this year..... THANK YOU Giulia

I was just wondering if anybody had come across this, and what comments you might have: http://taiwantoday.tw/ct.asp?xitem=105029&CtNode=416 Incidentally, where I take my DS for acupuncture, the acupuncturist suggested I put him on Zhi Bai Ba Wei Wan, and since he started things seem more stable, although it is too early to tell. Thank you! Giulia

I am sure he has allergies, but I suspect that the Vit. D benefits are a combination of things. The vit D Helps him absorb magnesium and calcium better, and then it also helps with allergy related symptoms including tics), maybe ?? Thank you

Very interesting, Lisa, THANK YOU for sharing this info!

HI I GIVE HIM THE GENERIC VERSION OF CLARITIN. HAD BAD REACTION TO ZYRTEC SO DROPPED THAT ONE. IT ALSO HAS HELPED TO DO NOSE WASHES TWICE A DAY, AND ONCE A DAY HE GETS NASONEX (NASAL SPRAY). TAKE CARE! GIULIA

Hello! I wanted to share the fact that I have noticed a difference when I am out of town and my husband does not add a drop of Vitamin D to my DS apple juice in the AM. Has anybody else noticed that Vitamin D helps with keeping tics under control? My DS is also taking: Natural Calm + calcium, Vitamin B6, antihistamine + washes his nose out 2 times /day (that has helped as well). Take care Giulia

Hi! My DS has dramatic neck jerks and assorted sudden movements that were gone all year. They are back this year, the same way they came back in SEP/OCT of last year, to then be gone by NOV. I thought maybe it had something to do with the soccer fields being sprayed with something that does not agree with him, but then again, they seem to bad all around. Has anybody tried something successfully during the fall?? take care Giulia

i have seen the bonnies thing but not really much on the empower. i read on a thread on here that the empower can make tics worse. i just am scared to try anything new. my main thing is just tell us he has touretts. we have been to special dr's in highly respected childrens hospitals and they say he isn't adhd or have touretts he just has a tic disorder. well after yesterday it was like watching a kid with tourettes. he was in his room blurting out things like BLAH, BLAH, DA ,DA, and i would ask him what he was doing and he said watching tv . then it sounded like he was saying FA FA FA and i was soooo scared it was going to be a bad word come out . then once he went outside to play it all went away and didn't do it again for the rest of the night. just the head popping off and on and the eye rolling he does from time to time. it comes and goes and this is why they told us he doesn't have touretts because he can totally stop when he is focused on something else. i don't know if it is a nervous tic or something he is eating or what. allergies showed he was not allergic to anything but that doesn't mean it can't be i guess food dyes right? i will look into these supplements and go from there. thank you both for your help. What kind of allergy test did you do? The traditional test (grid in back) showed NOTHING at all for our son, but the Elisa/ACT showed he is hypersensitive to 11 different items. You might want to try that. He also does much better on NATURAL CALM vs. just magnesium citrate. Hope this helps. the allergy test done was done with little plastic ball up and down the arms. it basically test for allergies that could be from pollen,molds,grasses just the basic type but they did test for dairy being when he was little he had milk allergy or that is what we were told being he could not tolorate any fomula other then nuetramagin. he still gets stomach cramps from drinking milk so i think he may be lacto but not actually allergic. i have read alot of things on the natural calm and was wanting to try it. i was scared to purchase it. i am to the point where i may just give in. I WOULD DEFINITELY DO THE OTHER KIND OF TEST (IT INVOLVES BLOOD WORK) BECAUSE IT IS MUCH MORE COMPREHENSIVE, AND FOR US IT WAS A TURNING POINT. GOOD LUCK

i have seen the bonnies thing but not really much on the empower. i read on a thread on here that the empower can make tics worse. i just am scared to try anything new. my main thing is just tell us he has touretts. we have been to special dr's in highly respected childrens hospitals and they say he isn't adhd or have touretts he just has a tic disorder. well after yesterday it was like watching a kid with tourettes. he was in his room blurting out things like BLAH, BLAH, DA ,DA, and i would ask him what he was doing and he said watching tv . then it sounded like he was saying FA FA FA and i was soooo scared it was going to be a bad word come out . then once he went outside to play it all went away and didn't do it again for the rest of the night. just the head popping off and on and the eye rolling he does from time to time. it comes and goes and this is why they told us he doesn't have touretts because he can totally stop when he is focused on something else. i don't know if it is a nervous tic or something he is eating or what. allergies showed he was not allergic to anything but that doesn't mean it can't be i guess food dyes right? i will look into these supplements and go from there. thank you both for your help. What kind of allergy test did you do? The traditional test (grid in back) showed NOTHING at all for our son, but the Elisa/ACT showed he is hypersensitive to 11 different items. You might want to try that. He also does much better on NATURAL CALM vs. just magnesium citrate. Hope this helps.

I had some really good results with acupuncture, have you tried that? How about Epsom salt baths? Good luck!! Giulia

Hello everybody! I was wondering if anybody watched the special on Monday night, and what they thought. I was a little disappointed that there was no mention on what we are doing on this forum: allergies, hypersensitivities, supplement, magnesium, epsom salt, acupuncture, etc. and the impact on tics. In fact, one of the kids' mother said they were trying a holistic approach, but it was not working. To me it was not completely informative, because somebody watching this trying to get info should be told that this is a definite good option, and many people are benefiting from it. Anyway, I just wanted to check if anybody had any comments. Thank you Take care, Giulia

Hello everybody I just wanted to share this, hoping it might help others. I have been using organic sunblock all summer. Then my son went to camp and they applied chemical sunblock (even after I told them NOT TO). He came home that day, and his tics had become out of control. I immediately put him in an epsom salt bath, and things were back to very manageable by the time he got up the next AM. Also, another thing I found helpful is the start of occasional acupuncture. Good luck! Giulia

Hello I read on this forum CHEMAR making a comment on the importance of the type of magnesium we give our kids. I had forgotten about that, so I went and looked at what I was giving my son, and sure enough, it was Magnesium Oxide (+ Zinc and Calcium). Once I realized that, I immediately switched back to Natural Calm Plus. W/in 48 hours the insidious throat clearing that we could not conquer (lasting about 7 weeks with only a 2 day truce) dramatically decreased. Then it just went away within another day. I am thinking it has to do with the better absorption of magnesium. Any thoughts CHEMAR? I just wanted to share this in case it might help others. Take care//good luck to all Giulia

THANK YOU I HAD A FEELING THAT'S WHAT IT WAS I HAVE THE ORIGINAL BOOK /LIKED IT VERY MUCH TAKE CARE

Sounds very interesting! btw, have you heard of this, and what is the technique he is referring to, if you know: thebleeder /remedies/TOURETTES.htm Just trying to figure out if it's a waste of $$...... THANK YOU and take care

Hello Cheri I just wanted to give you an update. 4 days ago I added B6 and changed antihistamine (I know I should not have added 2 things at the same time). He has been tic free COMPLETELY for 2 days. Now I have no clue what did it, if it was the additions, or other environmental factors. Thank you, it makes me feel better to have your feedback! Take care Giulia

THANK YOU FOR THE REPLY. I AM AN AVID READER OF THIS FORUM AND FIND THE INFO EXTREMELY HELPFUL. SOMETHING I WANTED TO ASK YOU: HE HAS A NEW TOOTH TRYING TO COME IN: HAVE YOU EVER HEARD OF THAT BEING A TRIGGER ? WHAT ABOUT THE LAWN BEING FERTILIZED, AND THE EXTERMINATOR COMING IN THE HOUSE TO SPRAY FOR BUGS, SHOULD I BE WORRIED ABOUT THAT? YOU MENTIONED A HEPA FILTER: SHOULD THAT GO IN THE AIR-RETURN CLOSEST TO HIS ROOM? I DO THINK THE POLLEN BEING SO BAD THIS YEAR IS AFFECTING HIM. I DID DO THE SPIT TEST A FEW WEEKS BACK AND HE TURNED OUT POSITIVE, SO I ADDED A PROBIOTIC W/OUT MAKING CHANGES TO HIS DIET. WAS THAT WRONG? I AM JUST STRUGGLING WITH THIS BECAUSE HE HAS BEEN VIRTUALLY TIC FREE FOR 6 MONTHS, AFTER GOING THROUGH A HORRIBLE OCT/NOV 2009, SO I AM UNSURE WHERE TO START LOOKING. SINCE THEN WE COMPLETELY CHANGED OUR LIFE, GOING COMPLETELY ORGANIC (THAT WAS THE BIGGEST AND BEST THING FOR HIM) BTW, THE THROAT CLEARING SUBSIDED YESTERDAY, TO MAKE ROOM FOR A FACE AND NECK STRETCHING WITH EYES LOOKING UP..... LAST QUESTION: WHEN YOU TRY SOMETHING NEW ( AMONOACID/SUPPLEMENT) HOW LONG BEFORE I SHOULD EXPECT A GOOD/BAD REACTION ? **thank you** GIULIA