Chemar

bumping up for those who are new members

Hi lmcgill I would feel that calcium should still be part of the vitamin/mineral supplement you give. If he is getting a lot of dairy and calcium from other sources, then the calcium in his multi should be fine A 2:1 ratio of calcium to magnesium is recommended, and tho this is an approximation, yet one can try to balance this way as best possible Just a point tho...you say you were giving two tablespoons??? of Natural Calm....I assume you mean TEASPOONS as the max dose per serving is recommended at 3 TEASPOONS, but many people find one TEASPOON quite sufficient Interestingly, my son doesnt like the Natural Calm tho my husband sure does. My son says it relaxes him, but that he does not find that it helps his tics in the way that his regular magnesium supp does

Dedee have you ever noticed your son making those noises when he sleeps in his own room? In the case of TS tics, sleep is usually a time of total respite from tics. I am wondering if, especially as you say your son has asthma, there is something in your room that is triggering an allergic respiratory reaction? newer carpet, paint, woodwork, perfumes, dust, any kind of chemical cleaning agents, pesticides, FEATHER pillows etc etc??

Hi Ellie and welcome no, I havent heard of anyone using Attend for TS for OCD, Inositol plus vit B6 is excellent and safe for all ages

Dear Faith what a very special post to introduce yourself. a very big welcome to you! we are so glad to have you here. I will be back on later (still working) and so just wanted to greet you and lift thanks along with you that your prayers for guidance and direction are being answered, and that you are on the path to finding solutions to help your son. Cheri

Hi Alison I really only know the docs here in Florida, but would strongly suggest again that Michele should contact Dr Tanya Murphy at the Shands Clinic in Gainesville, Florida and ask for a referral to a doc in her area. I feel sure Dr Murphy would know of other docs around the country who are aware of PANDAS and who know how to dx and treat it Their phone number is (352) 392-3681. Here is more on Dr Murphy She is at the forefront of PANDAS research http://www.psychiatry.ufl.edu/people/bios/murphy.htm HTH

what wonderful news Alison I am so pleased for you and your son! and thanks so much for sharing it here. I know this will also be an encouragement for other parents dealing with PANDAS

hi gdmtam the best way to post here is just to use the "add reply" button look forward to hearing from you

thanks Ronna

just wanted to mention that Natural Calm is available at iherb.com at half the regular price

Michele I really think you should begin investigating PITANDS and if your doc doesnt know anything about it...try to find one who does! where PANDAS is strep induced, PITANDS can be triggered by a number of viruses, bacteria, and other infectious microbial agents, and yes, there are ways to deal with it I have heard good reports on using MONOLAURIN, a natural antimicrobial made from coconuts (made by Ecological Systems) It is available from http://www.vitaminshoppe.com There are also conventional meds that can help, but I always suggest trying natural means first, unless the situation is critical and needs a drastic intervention

you are so welcome Alison....when my son made his dramatic improvement, and based on the agony I had endured before, not knowing there were communities like this, I was determined to "pay forward" and share what we had been thru if only to help one other person. it is a blessing to me to see so many fearful, desperate parents arrive here and begin to notice the change in them almost from the start as they find the support and the experience and information that this community is known for. re the PITANDS testing, there may well be far more precise and sophisticated diagnostic criteria available now. It was 2000 when we had the PANDAS/PITANDS evaluations done

very well explained Alison Patty, that book by Doris Rapp is very worthwhile read

Hi Alison it is so good to hear of the improvement you are seeing the PITANDS testing involves a series of diagnostic criteria I dont remember all of them, but I know that we were asked a lot of questions related to infection history and they tested for Epstein Barr and other viral/bacterial agents here is a website that I had bookmarked at the time that explains it all in fairly understandable terms....the section in the pink box gives some of the diagnostic criteria for PITANDS http://www.webpediatrics.com/pandas.html

Laurensmom yes, in order to determine whether PANDAS dx is appropriate, strep is tested for PANDAS testing involves testing for strep both as a culture as well as blood tests to determine whether there are antibodies to strep present so often, conventional docs will do a throat swab and culture and if it comes back negative they say there is no strep however, PANDAS aware docs like Dr Murphy and her group at Shands know that the strep can be present in the body without manifesting as strep throat, and so they do the detailed blood tests PITANDS is also tested for

hi again just a couple of additional things to note if he is on zoloft , he certainly can take vitamins and minerals, but should avoid things that also increase serotonin, as the zoloft is already doing that....so Inositol, 5HTP, st john's wort etc usually taken for OCD and depression should be avoided also,there are some documented cases of zoloft actually CAUSING TICS, tho from your post it would seem that the tics started some time before he started the zoloft when it came to elimination of things, my son was really amazing in how he worked with me on this. thankfully for him, regular food was not a problem, tho we did do some elimination of first dairy and then gluten just to be sure ( we also had food and environmental allergy testing done) it was crystal clear that artificial food additives set his tics and OCD off big time and so his compliance on that elimination was relatively easy altho certain types of screen stuff does make him tic more (flashing, explosive light changes etc) there I allowed him to make his own choice. I ensured that he has LCD monitors and daylight lamps to minimise the impact. But his tic response to screens is relatively mild compared to other triggers...and the stress it caused him at the thought of having to eliminate was greater than the tic factor and so he self regulates on this..........choosing what he plays/watches with more care and not doing so for long stretches He very seldom goes to the cinema, as that is a far bigger trigger for him than TV or computer monitors The combination of the darkened room with flashing screen, loud sound and all the chemical and perfume smells that exist in the theatre are a major trigger for him

hi shga and welcome:) great that you are reading Sheila's book! I am working at present so cant answer in depth but would suggest you start reading threads here and this will hopefully give you lots to work from finding a good doctor to guide you on all this is IMHO essential...DAN, Integrative, Environmental, Holistic, Naturopath, DO are usually most open and experienced will be back later to give you some more info hopefully others will post in the meantime glad to have you here

Lisa altho I anot a PANDAS expert as my own son has genetic TS and not PANDAS, yet from everything you describe, this sounds like PANDAS to me! there are doctors out there who know about PANDAS and who know that regular strep cultures may be negative when the strep antibodies in the blood are sky high! I have just recommended to another mom (Dedee) that she contact Dr Tanya Murphy at the UNiversity of Central Florida Shands Clinic who is at the forefront of PANDAS research and ask them for a referral to a PANDAS doc in your area 1.800.749.7424

Dedee I would also recommend the Shands Clinic at the University Of Florida Hospital in Gainesville, Florida for PANDAS. Dr Tanya Murphy is at the forefront of research into PANDAS and my son was a patient there when he first manifest his tics, but he tested negative and so we stopped going there, as it was a 2+ hour drive for us each way However, Dr Murphy is a really knowledgable doctor when it comes to TS and PANDAS, and she is also a very caring person. Here is her University of Florida biography http://mdc.mbi.ufl.edu/murphy.htm If it is too long a drive for you, possibly contact them and ask for a referral to someone in your area I dont have the dorect number to her dept anymore but here is the general number and they can put you thru to her 1.800.749.7424 all the best to you, and also to you Michelle oh for the day when conventional doctors bother to educate themselves fully and stop leaning on the "convention" in the not too distant future, when PANDAS is fully recognised and appropriately treated, they will realise how archaic and ignorant they were being by not opening their eyes to this very real and very treatable condition!

Hi Patty first off, I wanted to give you a (((((((HUG)))))))) as I could sense from your post just how worried you are There is no way IMHO that your daughter could have "caught" tics from sharing Epsom Salts tub water with your son.......but she certainly would benefit from having her own with the full concentrated effect of the salts Remember that with the TS gene, it doesnt always manifest in the same way in all people and so there may be a family link, but with tics so mild that they have gone unnoticed in the past throat clearing and neck stretching/bobbing/lashing are recognised TS tics However, there could well be other factors, whether environmental or internal that could be causing both kids to tic I apologise for not remembering, but have you had PANDAS testing done? Also, has your house got any new paint/new carpet/new wood furniture etc and do you use any pesticides indoors? on any garden areas that the kids come in contact with? And have you done any pyroluria tests. There too, there can be a family link, especially if anyone in the family has a history of alcoholism. These are just random ideas that come to mind in ways to help you possibly find answers to the cause of the tics....... dont lose hope Patty..whether both your kids are exhibiting TS tics or whatever the cause, they will be ok and with continued diligence, you will find ways to keep them as healthy and happy as possible. Remember to keep looking after you to............ A stressed out anxious mom is something kids pick up on like a radar and it negatively affects them too. A good Epsom Salts soak before bed can work wonders for moms too

how very gracious of you to post an apology this way Laurensmom thank you!

here is some info on GABA and TS that has just recently come up in a NeuroTalk discussion http://neurotalk.psychcentral.com/showthread.php?t=10805 ortho we have ALWAYS used GABA in 500mg dose and it is available in that dose by many manufaturers we use the one by NOW http://www.iherb.com/store/ProductDetails....p;pid=NOW-00087

Hi Patty 100mg with dinner is recommended for adults also want to suggest Royal Jelly.......it is loaded with nutrients and is an excellent source of the B vits It can be taken in conjunction with the VitB5/pantothenic acid

Dear Tess'mom i couldnt get online earlier or I would have stepped in to stop the heated personal exchange that was going on on your other thread My apologies to you that it got highjacked that way We usually do not have that kind of emotive posting here, and I have deleted all posts that are not in keeping with the support and information that this board is known for, and that is part of the terms of service for being a member here i hope you will stay with us, and that you will understand that this is not normally what happens here all the best Cheri