Chemar

Michele just something re the azith... From my understanding,it isnt supposed to be "immune building" ...but rather immune modulating, which, in autoimmune illness, is very different..... so I can see why she would have said it isnt an immuno booster. It is an immune modulator tho from what I have understood, and that is very helpful in autoimmune issues

always good to see you here Carole thanks for posting this!

what a very encouraging update tlk

welcome to Latitudes/ACN Jody honestly, because of the added issues re the hydro, this really is something I would consult a developmental pediatrician on If you need to chat with others re whether this could be related to the hydro, there is a forum for hydrocephalus at NeuroTalk Cheri

Hi Lenny yes Patty is correct that the pre- and pubertal years are known to be the "worst" in terms of tics and TS, and that things tend to improve once the teen years are past.

Hi 650mg of taurine for a 40lb child sounds high to me? My son was well over 100lbs when he was on 500mg taurine once a day. I havent ever noticed an appetite suppressant action of taurine also, is magnesium being given with that?

bumping for the member who asked

Hi just a quick word on the antibiotic ....the anecdotal evidence here, and in other reports, is suggesting that AZITHROMYCIN (zithromax) may be the best antibiotic for prophylactic use in PANDAS. In addition to killing strep, it also appears to have an immuno-modulating effect, which is of great benefit Ronna and Alison have documented their children's experience with azith here

hi PANDAMOMMN we have a number of parents of PANDAS kids here who have remarkable success stories, and although by a variety of treatment protocols, a unifying theme. Ronna, ad_ccl (Alison) and Dedee come to mind immediately and many more are here being the Labour Day holiday weekend in the US, we may not see some of our members for a few days but I can greatly encourage you to feel comfortable to share as much of your story as you would like, and do also search PANDAS strep on the forum search to bring up many threads on the subject welcome to Latitudes/ACN and we look forward to getting to know you Cheri

there is a song by Mercy Me that has really been ministering to me so much I hope it will be of encouragement to others too

hi hermom yes, my son had CBT some years back to help him with his OCD/anxiety/phobias and we were very pleased with the results, especially as the therapist provided him with the tools of training to now help himself I cant stress enough tho how important it is for your to FIRST interview the therapist yourself to be sure that this is a kind and compassionate person. CBT is just what it suggests.....it helps people to understand and work through their actions/emotions etc ...in the care of a therapist who has the right attitude, this is by far one of the best treatments ...but if a therapist is domineering or impatient or lacking in deep compassion then it can be traumatic. I have a useful sites/info sticky on the OCD forum here that has info on CBT http://www.latitudes.org/forums/index.php?showtopic=1963 HTH

mblack stress is known to be possibly the number one tic trigger so it is very possible that the combination of anxiety about the surgery plus weather etc is the trigger forgive me for not remembering, but does your child have Tourette Syndrome? If so, please dont forget that, nomatter how many good things you add to diet or bad things you take away from his life....a person with TS will tic. Period. The measures we take helps to reduce the intensity and frequency of TS tics, but IMHO anyone who tells you that they have a magic cure all for TS tics is using hyperbole. I have said it before and will continue to say over and over that the very best thing I ever did for my son and myself and our own family was to understand and accept that people with TS tic, and not to obsess over "curing" the tics, but rather to focus on getting my son as healthy as I possibly could, and to be thankful for the fact that the good diet and supplements and attempts to remove as many tic triggers as possible DID have VERY positive results. The fact that my son still tics is not indicative of failure of any of the treatments, quite the opposite....we have seen how stopping any of them causes the tics to explode! He tics because he has Tourette Syndrome, and yes, I firmly believe that as we learn more and research gives more details in understanding TS, there may well be a complete cure on the horizon. But it does not exist today. Only ways to make things much better, and well worth pursuing sorry if I have given a speech about TS, when in fact your child may not even have it. It's hard for me to remember exactly as we have so many members here. In the specific case of your son, and not knowing his dx, I would strongly suspect that the anxiety about the surgery is what is triggering the increased tics Please please please dont ever see your son's tics as God punishing him personally. My son won a Local Hero award in 2004 for his striving to educate people about TS and about what it is like for a young kid to grow up being "different" ......... one of the things he spoke of was how, despite the challenges and the hurts of being a kid with TS, yet he knew that even in this God had blessed him, because it had brought him a depth of compassion and a depth of character that may never have been without having to walk the harder uphill road. God loves your son even more than you do mblack, and He can and will work all things together for good in his life. I pray that you will be able to help your child relax before the surgery and that all will go well, and that the removal of the tonsils will have a very positive effect on his overall health. May God's peace be with you too. Dont worry, you are doing everything you can to help your child. Just keep going a day at a time and dont lose sight of the light at the end of the tunnel. Cheri

AMEN! and bless you for that prayer, CP

Hi agrajag we have had anecdotal evidence here (including my son) where pesticide exposure can heighten tics. I noticed that you mentioned soccer, and so am wondering if the soccer field may have recently been pesticided/fertilized if the tics are occurring at the same time as last year, you may well be looking at some kind of an environmental trigger like that for example, has your child been swimming a lot? I ask because chlorine is also known to trigger tics in some. here is an article on Finding Triggers for Tics that may give you some pointers

Hi Becky Sheila has a sticky thread here on Finding Medical Help that gives info on locating DAN and other Integrative physicians

so good to see you both Sunshine and Giselle and how encouraging to read your news, Sunshine!

Faith yes, the reason I posted it was FOR the discussion IN the article, not necessarily discussion here, altho some here have had chelation therapy and, most importantly to me, there was a new parent here just the other day who mentioned that their child has been prescribed ACTOS

this article from Newsday.com caught my attention for the fact that it speaks of some of the alternative treatments being used to treat autism as "dangerous"........... I did note the caution given re Actos, a diabetes drug being given "off-label" to autistic kids, and I remembered reading here recently that someone's doc had just prescribed this for their child with tics? PANDAS? ....sorry but I cant remember which thread this was in......... anyway, it seemed an article worth bringing for the discussion ( edited to add: see it's comments section) http://www.newsday.com/news/health/ny-hsau...0,7750405.story

Hi Trent good to see you here and I am so glad to see Kim has given you all this excellent info that she is a whiz at finding and yes, that allergist joins the looooooooong list of conventional doctors who diss anything they dont have personal knowledge or understanding of.......it really makes me so mad. It is one thing for them not to be correctly informed.........but to negate that which they are ignorant about is IMHO reprehensible!! I cant remember if you discussed PANDAS or PITANDS on NeuroTalk, but I agree with Kim that it would be a very wise move to look into whether all this could in some way be linked to microbial action and yes, the side effects of Keppra are something that would have to be considered too I do hope you will be able to find a clued up doctor soon Cheri

Hi Janey I have heard only good things about Native Remedies products, for adults, kids and pets I do recall a member posting here in the past about using this particular product successfully perhaps if you do a search it will bring up the old info for you I do know that the company producing these remedies is considered to have a lot of research and quality control behind their product

Hi I am by no means a PANDAS expert but my son was seen by Dr Murphy 7 years ago . Dr Murphy does not only consult for PANDAS cases, but covers a wide range of pediatric psychiatry and neurological disorders, plus, the very fact that your child has had strep and does have tics etc fits right into her area of expertise.

Hi Calicat I am multitasking here so have to be brief..... two amino acids that have been found to help with tics are taurine and l-carnitine, with the latter having helped a lot with my son's eye tics initially, but then he seemed to not tolerate it well anymore (after about a year of use) We still use taurine as a general tic reducer Vitimin B1 is very beneficial.......my son took it to combat mosquitoes when on a missions trip to south america, but found that added benefit re the tics. (mosquitoes hate blood with B1 in it) so sorry to hear of your experience with that one doc..........another reason why I always suggest to ensure that the physician has experience with tics etc when we were doing the dx carousel, we had one doc say my son's sniffling/throat clearling/cough etc etc was due to asthma and wanted to put him on inhalers etc. Thank goodness we got other opinions!! re the enzymes........our experience has shown that even subtle changes in the supplement program can impact tics and so we tend to stick with what is working. If the system needs the enzymes ( ie is not functioning optimally on its own) then they may be very important in the overall treatment success, as they may be helping the other supps etc be absorbed and function ok gotta run HTH

thanks for the kind words powerofprayer your user name really sums up why I volunteer my time here I saw the power of prayer first hand when, as a desperate mother, I was given a copy of Latitudes magazine. I had been praying for God to help me find a way to help my son without having to use the prescription meds that I could see were harming him. Cell Food is formulated in such a way that it is tiny doses of essential cell nutrients. Where the individual substances at physiological doses may have one form of action, it seems to me that the way they are formulated in Cell Food brings about a more holistically balanced cell nutrition we certainly have not noticed any adverse effect on my son's tics, but, as mentioned before, I also have not seen any direct beneficial effect on the tics either...rather just an overall health boost. Cell Food was recommended for me when I was detoxing from pesticide poisoning in the late 90s, and again for my son when he was dx with Crohn's we now all use it along with our multi and omega EFAs every day

Hi and welcome sorry I havent replied before but I am under a new work schedule for my business and so have had less time to spend here replying, although I do read all messages As you are in Georgia, and if needed, there is a PANDAS expert in Gainesville Florida, Dr Tanya Murphy at the Shands Clinic http://mdc.mbi.ufl.edu/murphy.htm As many of our parents of PANDAS children have reported, prophylactic use of azithromycin seems to be an antibiotic with the best track record re PANDAS I will try to post more again later

Carolyn & PCD have you tried the natural toothpowders sold at Whole Foods and other health stores my son gets teeth tics from past and so has used powders and finds them good. I dont think they have any coconut and I know they dont have fluoride. I'm not near one right now to read ingredients but am pretty sure they are free of those, iherb sells some good natural herbal mouthwash too