Chemar

remember this is an old thread and research grows daily in some areas! we were told to treat Inositol like any other supp in that one should always start low and go slow, lowest dose first for a few days and gradually work up to where you are heading. Again, we were advised to have my son on 500 mg- 1 gm as daily intake and then to go up when in flare. He found working up to 12 gm a day stopped the flare, but maintaining high inositol long term is not a good idea as it can start having a reverse effect. Made my son feel jittered. It is a good idea to also go down slowly rather than abruptly ie titrate back down.

I am referring to my son's physician

our physician informed us that 500-1000mg a day was a good intake to ensure for anyone who had OCD tendencies. He referred to it as the "maintenance" dose and then increasing it when in flare

Michele you can contact the Tourette Syndrome Association and find an advocate to help you. Some even work pro bono Have you considered a 504 instead of an IEP? If your child has a TS diagnosis from a doctor then BY LAW the school has to provide certain accommodations as it is covered by the Americans with Disabilities Act for education here is the TSA edu info. Their phone # is on the website. They are very helpful when it comes to helping parents fight for education accommodations! http://www.tsa-usa.org/educ_advoc/education_main.htm

I think that guy posted here some years back about it My son tried it but did not like the effect it had on him. Just be careful of anyone claiming any "miracle cure" for TS. Different things help different people but "hype" usually is just that.....

Hi The dose really depends on the individual. 500mg - 1 gm is usually enough for regular "maintenance" , and going up for when OCD is flaring I have heard never to do the higher dose for more than 6 weeks at a time also, if you are already on an SSRI you want to be very careful as inositol added can spike serotonin...not a good thing either! if you get agitated from a low dose, that may be what is happening there are foods rich in inositol. like cantaloupe and fresh limes, amongst others, so you may find more benefit from them.

our health practitioners sent away all the testing stuff for us so I dont remember all the labs, but in the post re testing on that link I gave you, the various labs and what they do are listed, along with other links to stuff that may be helpful to you Claire was a member here some years back, whose son had tics as a result of extreme photosensitivity, which she helped not only by careful limiting of "flicker" from CRT screens etc, but she also saw his tics diminish when she implemented nutritional and other healthy changes. She was great at compiling info and giving a concise summary etc. Worth checking into her posts linked on that "Helpful" thread link up top

Hi It does sound like it could be a vocal tic. Has anything changed in her diet? environment? any shots? Illness at school? Some members here have reported that removing dairy can help with vocals? Not sure if you have tried. l-carnitine is an amino acid supp that may help with vocals, but with such a young one, be sure to check with your health practitioner before using it.

Hi have you looked at the various testing threads linked on our helpful threads sticky above, especially some of Claire's older threads http://www.latitudes...?showtopic=2459 we did both blood and where needed, stool/urine analysis as well as hair & transdermal testing and I was really amazed at the closeness of the results But you need to do that which you feel is reliable so that you are not left with doubts or concerns. We found simple DIY food elimination very helpful in identifying those things that may not necessarily show on allergy tests, but to which the patient may still be too sensitive when their immune system is compromised as in a lot of our kids.

as the emphasis here is more on natural and alternative treatments, here is our administrator's excellent book Natural Treatments for Tics & Tourette's: A Patient & Family Guide by Sheila Rogers http://www.latitudes.org/book.html

Stephanie as you seem to appreciate natural treatments, maybe check with your doc if Oscillococcinum is ok to give in case of flu I have heard very positive reports about it. ps ah I see you mentioned it there....it is supposed to be very good

thread with links to PANDAS info to take in for I.E.P at school http://www.latitudes.org/forums/index.php?showtopic=10744

as far as I know the Kids Calm has been discontinued, but never had any bad preservatives???? http://www.iherb.com...226-g/5120?at=0 The regular Natural Calm is ok for kids too for the magnesium, it just doesnt have the added vit C and zinc that the Kids Calm had

You are welcome I had known that the "sex" steroids, especially androgens/tesosterone, were dopaminergic and that it is believed that is why so many more boys than girls have TS gene manifestation but it wasn't till my son's Crohn's dx that I learned of the corticosteroid-dopaminergic issue, as one of the GI specialists pointed out it may be risky for my son to have any anti-inflamm steroid treatment for Crohn's because of the potential to increase tics. then we had the disastrous results when, against my warnings and pleadings, my husband (also TS) was given prednisone steroid burst-taper for sciatic injury. His tics exploded, after having calmed right down to just a barely noticeable eye/mouth twitch and occasional throat clearing, since his 20s. He was in his early 60s when he had the steroids. Tics spiked and have remained quite elevated since. This was in early 2008 that he had the pred. He sure wishes he had not dismissed my urging him not to have it, but he considered the doctor telling him it was "unlikely to affect his tics" to hold more weight There is quite a bit of info on cortisol (=prednisone) increasing dopamine. Here are 2 of my bookmarked links http://www.ehow.com/...e-learning.html http://www.jneurosci...hort/24/11/2825 Thank you! I've been searching around for prednisone and dopamine...found nothing.

There is quite a bit of info on cortisol (=prednisone) increasing dopamine. Here are 2 of my bookmarked links http://www.ehow.com/facts_5798168_cortisol_-dopamine-learning.html http://www.jneurosci.org/cgi/content/short/24/11/2825

sorry but not all neurologist's are "TS specialists" Steroids are dopaminergic Dopamine increases tics in TS I don't consider our family's personal experience with steroids (prednisone) and that of others who have noted the same with it spiking tics to be "no evidence"

Hi I moved this from the TS forum to the PANDAS forum as the parents here will be able to give guidance on the strep aspect, and also on the importance of a comprehensive evaluation before a doctor can just rule out PANDAS. Sometimes this means having to find a PANDAS literate physician all the best The TS/tics board is also there if you want to learn more about other aspects, especially natural treatment alternatives for tics & OCD

I do think that, as with all treatment protocols, whether "scientific" or anecdotal, one needs to remember that each individual has their own unique set of issues and so I always tend to look at the whole, and then glean from it that which we find helpful for our unique situation, and discard the rest. eg we have tried my son off vit D before with very BAD results, he clearly needs it! ...........and once our holistic practitioner did a technique to "reset" his immune system, again with not good results, so we have learned no immune "boosting" stuff is good for my son, only that which modulates his immune system seems to work

Red40 and many of the food dyes are made from petroleum , and are banned in UK, some European countries and Canada there are numerous articles and reports on why dyes are bad, especially for people with neuro probs Here is a short and to the point one from the "mainstream" media http://www.cbsnews.c...130-500803.html need I say more......................

I am not trying to negate your ND but I wonder at that dose? Melatonin is a HORMONE! and where it can, and does, have benefit in certain conditions......... 5mg daily is IMHO a very high dose for a developing child. My concern is it can alter the reproductive functioning!! Melatonin is usually given for sleep/relaxation/anti-anxiety. But this is the first I have heard of it being prescribed specifically for GIT. In fact, one of it's adverse side effects can be abdominal cramping. Perhaps the doc is suggesting it for it's immune boosting or possible ant-inflamm properties? melatonin is found naturally in the GIT and I found this related to it's GIT function http://www.ncbi.nlm....pubmed/18812627 and http://www.ncbi.nlm.nih.gov/pubmed/17928638 do also note that it can interfere with immunosuppressant and other medications http://www.mayoclini...effects/AN01717 Obviously, your doctor knows more about your child than I do, and may be spot on with this prescription, but I always believe parents should be fully informed on the pros AND cons of anything, med or supplement, so felt it important to mention this

Not sure if you mean me? as I have posted that here a number of times My son was evaluated for PANDAS by Dr Tanya Murphy almost 10 years ago, and we were told he did not have PANDAS based on absence of any evidence of strep in his medical history as well as no evidence in titers, cultures during the 6 months he was seen at the Shands clinic when she was there. He had a number of flares in severe OCD during that time, never associated with any sign of strep. We do have a family history of tics, TS and OCD and he may be PITANDs as he has had EBV, candida and possibly other stuff I do hope no one else would be intimidated to post something like this here.

just want to be sure that everyone should feel comfortable about sharing their experiences without concern about a subject like this becoming touchy. On a forum such as this, members should be able to disagree *agreeably* and not be shouted down if they may believe a different treatment option/dose or whatever worked best for their child. The good thing about these forums has always been open sharing of info and experiences. Take what is helpful for you and leave the rest for someone else, and *ALWAYS* consult a qualified professional before trying anything you read here on your own. As this thread is a question about IVIG dose, I do hope everyone with info will feel free to post about it if they would like to, and not feel intimidated because someone else may have a different view. Not everyone's child is dealing with the exact same issues, and so responses to things varies.

I just wanted to throw something into the mix here, especially for any parents sitting on the sidelines of this discussion thinking "well, I feel my child is "gifted" and talented, but they are also exhibiting learning disabilities......." Many kids with extra ordinary talents and abilities & IQs also can have LDs, especially when they are impacted with illness! So "giftedness" does not exclude kids who also have LDs, or put another way, kids with LDs are not "un-gifted"

Fixit, agreed, and once again emphasizing IMHO that quote by Pasteur "The microbe is nothing, the terrain is everything....." thanks for posting that SF Mom (and Elizabeth for finding it)

oh yes so true Lynn! btw there is a healthy candy alternative http://www.naturalcandystore.com their motto: All the Fun without the funny stuff! ps still read the ingredient list tho as there may be things that you prefer to avoid. sometimes even some "natural" stuff isn't the best choice. But overall, there stuff seems really good !