Chemar

Hi PMom the first symptoms he had were an uncomfortable swallowing sensation. he always felt like something was blocking his throat. after that began GIT pain, poor digestion, frequent incomplete bowel movement with bleeding/mucous. He would wake around 3am in severe pain and found that a banana or glass of milk would sooth it for an hour or so and then it would return full force.. He also became very anaemic and fatigued We had transdermal testing done that kept coming back with possible parasites and epstein barr virus He was also suspected having an ulcer However, the colonoscopy/endoscopy revealed Crohn's

yes, facial tics and echolalia would sure move more into the TS area. on that TS Plus website there's a list of the various tics http://www.tourettesyndrome.net/Files/CommonTics.PDF it's great that you are cleaning up diet as well as investigating all aspects for yourself. honestly I was so shocked when my son's TS switched on big time just after his 10th birthday as he had very very severe tics and raging OCD, depression and anxiety. Altho I started researching as much as I could, I was so worried becasue of the severity of it all, that I relied too much on conventional docs and their standard treatments instead of following my own leanings toward alternatives. Since implementing chemical free and organic whole foods and the other things (like epsom tubs, acupuncture) I have seen first hand how his health has improved both for the TS/ADD/OCD as well as his GIT/Crohn's

Hi gfam I have been away for the weekend but just wanted to welcome you and have just been reading thru all the great info you have been sharing and receiving! My son has genetic TS, eventually dx aged 10 but likely has had his tics and OCD and tummy stuff since much younger. He is 18 now and dx with Crohn's in 2006 after a few years of misdx symptoms. Because of the agonizing pain that acids cause to the inflamed GIT in Crohn's , my son has learned to eat very differently in terms of spreading his meals into small nutritious ones thru the day, and careful ingredients. That avoids the hydrochloric acid attacks enormously. In his case, fruit really helps his digestion and Crohn's, and he can eat apples, strawberries, but he avoids the very acidic fruits like citrus, pineapples etc, and always has a bit of sliced banana with his other fruits. He had thankfully stopped all the artificial chemical food additives years back as he is mega sensitive to those. I make my own daikon radish and other pickled veggies Japanese style and use either cider vinegar or ume plum vinegar, and my son eats a little pickle with each meal. re the TS question...honest from what you describe in your first post, although your son does have what seem vocal tics, I am not sure it sounds like TS as much as a GIT/food sensitivity issue...but as many TSers have those, it really is hard. Glad you got the TSA website and I would also recommend Tourette Syndrome Plus at http://www.tourettesyndrome.net Leslie Packer has a lot of very helpful info on the spectrum and associated issues. so glad you have found info to help you help your son here too

Hi Patty we are at minimal doctor phase, thank goodness. General checkups every 6 months. acupuncture/bio/reflexology etc once a month. Chiro only as needed, usually once or twice a month

My oldest is graduating from college in New England so I am flying up tomorrow and back Monday evening Youngest is going to care for dad hope you all have a great Memorial day weekend God Bless

Greyhound...why not just try Kefir?

our experience has been that correct dose of taurine helps to reduce tics in general, but my son always had it with his magnesium

Hi curiousmom it's very possible that there may be a connection as Crohn's Disease is autoimmune & inflammatory, as is PANDAS. some researchers believe Crohn's may be triggered by bacteria ....possibly Mycoplasma pneumoniae My son has had great results with diet and supplements for his Crohn's...no flare ups for almost a year now!! The GI docs were sceptical about him not continuing the immuno-suppressive meds......but his last inflammatory marker blood tests (oct 2007) already showed significant improvement and he is a whole lot better now since then, so we are encouraged! Let me know if you need any info on what he uses and avoids A good book is The Maker's Diet by Jordan Ruben usually only a colonoscopy/endoscopy can definitively dx Crohn's

Hi Emma yes, that is what the cognitive behavioral therapy focus is...to understand and so learn to cope. It actually helped my son very much as he was not obsessing over it but coming to terms with it and learning how to deal with it

phew you must be exhausted myrose but I am so pleased to see you have at least got more answers and testing ordered. sure do wish he had done all this in the beginning huh rather than you and her having to go thru all the stress I know Sheila Rogers has stressed it a lot and I try to as well.....we arent "anti-meds" ...meds have their very important role, eg the antibiotics for PANDAS and, as you are finding, the help from the topomax for the seizures. I know the neuro said he doesnt feel the tics and seizures are related and I wouldnt want to contradict him.... but if she is PANDAS and has brain inflammation then some kind of connection would seem there in my unqualified opinion.....it will be interesting to see what dr Franz says on it all and yes, where I think maybe the Doc was being a bit extreme in his views on supps, being guided by a qualified professional is truly the best way when it comes to supplements, especially with a child and sure hope you do hear from dr Murphy hope you and daughter have a peaceful restful night

praying you will get clear answers from neuro Myrose and that all the rest will begin to work together for good for your little one and you as you get correct treatments once there is a clearer understanding of what is causing her symptoms God Bless

Hi Greyhound honestly, for my son it has always been the correct combination of the supps he specifically needed that has helped the most. If you have TS, then extra magnesium is a benefit and a good multivitamin should help too. then you could try adding other things one at a time for two weeks each and see. with a good multi, you should not need any extra Bs etc, only extra magnesium it can also take a good couple of weeks for benefits of a supplement to show fully, altho negative effects are usually faster to spot adding things for a few days and then stopping and adding others etc can sometimes throw the balance of your system out of whack. ps do you have a doctor or other healthcare professional who can maybe guide you with supplementing?

hi emma antibiotics cause upset tummy...tho the probiotics should help that I know some use high inositol but 3 grams seems high to me for a child.........we have never gone above 500mg per day. and especially as you are also giving samE PLUS 5HTP! I would be very careful re serotonin spiking unless this is what your doctor has recommended....still seems high when being given with other serotonin boosters not sure if that would decrease appetite tho

Hi myrose hope you got some good sleep! it's so hard to verbally describe my son's tics, especially as now they are a lot different from when he was first dx and from before he started the natural treatments. Most times they are more "fluid", but he has had some that are rapid and jerky. Also, when his tics and OCD are interacting, those take on a different form again however, as I mentioned in another post a while back, I do agree that TS tics seem to me to be different from other tics I have seen, although once again, TS tics are as different as the individuals who have them, and also are influenced by the level of suppression/substitution that the individual employs Hoping you are just taking a break today and that tomorrow will bring clarity and direction for you. God Bless

Geyhound...do remember that it can take a couple of weeks for a supplements beneficial effects to show. It isnt necessarily an instant response.

myrose first, I do so agree with the wise words from Faith above. I am truly surprised that the doc didnt tell you first time round of the discharges but hopefully you will have answers soon. Inflammation can do a lot neurologically too....maybe one of the docs will be able to check those markers too for you. I am hoping that this will work for good for your little one as better that they should investigate to know what they are treating. I hope too that the pediatirc doc on the 30th will be able to offer you guidance on what you will learn from the neuros. She is a very caring and balanced lady, using her conventional training to the utmost yet with that "alternative" openess that allows her to see things in a broader view here are a few specific topics I found on NT's epilepsy forum that may be helpful to you later. For now I pray you and your precious little girl will be able to rest and that the med will keep the seizure activity inder control this is a really nice mom (who may have posted here too at one time?) and deals with tics and seizures in a 4yo http://neurotalk.psychcentral.com/showthread.php?t=23760 this is someone who I believe posted here too, and mentions tics and seizures too http://neurotalk.psychcentral.com/showthread.php?t=25111 here is one on flicker triggering seizures http://neurotalk.psychcentral.com/showthre...=photosensitive this one is more about the Types of seizures and has info on myclonics etc ((((((((Wendy)))))))))))) I hope you are ok with your own health. You've been thru so much stress and I know first hand what that can do. Praying you will find strength and peace and that God will help these doctors to have wisdom and insight

oooh Emma the blue coloring and other chemicals like the propylene glycol, propyl gallate and titanium dioxide would make me not go near them for my son have you tried kefir? Lifeway makes really good ones. We get the natural and add fruit to it. It is IMHO the best natural probiotic

((((((Wendy))))) I just want to give you another hug and say I am so glad that she had a peaceful sleep. I hope you did too. Nomatter what the cause of the sizure activity may be, I am just thankful that God opened the doors for you to quickly get in to a doc who knew what to do. Praying for you and your precious little one. with love Cheri

myrose I have been doing some checking and it seems there are a number of reports of seizures and PANDAS here is just one lot that I found...there are many more http://www.epilepsy.com/node/481738

hi Sunshine my son was 10yo and tho initially nervous...he was so pleased with results and that the needles didnt hurt, that he now ranks it as his favorite treatment! He is 18yo now

wow indeed!!!!! thanks for posting it Carole now how many years and millions of kids will it take for them to take note!!!!!!!!!

((((((((Wendy))))))))) seizure activity is very different from the tics so it's good you did another EEG you may want to ask questions on the Epilepsy & Seizures forum at NeuroTalk as members there would know about the med etc. http://neurotalk.psychcentral.com/forum11.html I have seen topomax discussions there. Also mrsD on medications forum may have info for you http://neurotalk.psychcentral.com/forum72.html Try not to panic. Seizures dont mean a dx of epilepsy as there are oter tpes of seizure disorders and also seizures can be triggered by brain inflammation etc.....hopefully the medication will bring rapid relief. dont cancel your appt with dr Franz as she is an excellent pediatrician and is sure to have experience with seizure disorders too

Tourette tics & OCD wax and wane that way too. For my son, maintaining his treatments (supps, acupuncture, chemical free healthy diet) keeps the frequency and intensity down, but he still cycles I think you are wise to get titres run, especially when there is a strep history. hope things stabilize again soon

hmmmm, hard to say with my son as when at school he would always have the tic wax afterwards. I had always just assumed it was the "release" of tics after suppressing at school, as most do seem to do. (Like that soda pop analogy of it getting shaken all day and then the top taken off, once the release can come with family-solitude etc, and then whoosh.... But yes, later afternoon into night.... the Crohns cycle seems to run at worst early (3-4am ish) to mid morning and then settle more. When my son was having flareups he would need to keep a banana and bottle of protein shake mix in a cooler to have that when the pain woke him ): (hasnt in many months now since implementing his diet/supplement plan ) OCDs have always been worst late afternoon and into the night

bmom have you done the spit test to see if candida may be there? it isnt scientific but anecdotally seems to have high rate of accurate indication of yeast's presence tho a negative may not mean candida isnt there http://www.1stcandidacure.com/candidatest.html