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