kkver

Patty I will go back to old one. I have a feeling the main reason is change in some supplements. Stick to the one which is working and don't chage it. cheers

I go to armstrongs gradens for organics fertilizers for furits/vegitables and lawns. They sell UB organics brand. Not sure about your loacation but they are mainly in California http://www.armstronggarden.com/

Hi mike I was about to post a message to you to check about your son. My son was tic free during the 10 Day Zithromax course which i did in middle of April and after 5 day of antibiotic stopping his mild tics came with little humming but they went away on 7 days . He was Tic free for nearly 2 weeks when last week friday i saw some humming returned. He got annoyed at some thing so i recalled he cried for 15- 20 minutes. After that i have seen him humming ( chemar told it is vocal Tic) some times with once or twice vocal tic in 4 days. I have him on 250 mg Vitmin C (animal prade) , 2 Animal prade gummies of multivitamins and 1/2 tsp of norvigian fish oil ( lemon flavour ) all of them i got from Henery's my local Farmer market store. I will like input from all the people here how are these vitamins or should i change them. He was also pricribed catapres( similar to Tenex) but i refused it. http://www.naturesplus.com/products/produc...amp;category=12 vitamin C Supplement Facts Ingredient Amount % Daily Value Calories 10 Total Carbohydrate 2 g 1 %* Sugars 2 g † Vitamin C (as ascorbic acid) 250 mg 417 % Bioflavonoids (from Citrus limon exocarp) 50 mg † * Percent Daily Values are based on a 2,000 calorie diet. † Daily Value (DV) not established. Multivitamins http://www.naturesplus.com/products/produc...amp;category=12 Serving Size 2 Chewable Animal-Shaped Tablets Supplement Facts Ingredient Amount % Daily Value Calories 10 Total Carbohydrate 2 g 1 %* Sugars 2 g † Vitamin A (as beta carotene) 5000 IU 100 % Vitamin C (as ascorbic acid) 60 mg 100 % Vitamin D (as ergocalciferol) 400 IU 100 % Vitamin E (as d-alpha tocopheryl acetate) 30 IU 100 % Thiamin (vitamin B-1) (as thiamine hydrochloride) 1.5 mg 100 % Riboflavin (vitamin B-2) 1.7 mg 100 % Niacin (as niacinamide) 20 mg 100 % Vitamin B-6 (as pyridoxine HCl) 2 mg 100 % Folate (as folic acid) 10 mcg 3 % Vitamin B-12 (as cyanocobalamin) 6 mcg 100 % Biotin 50 mcg 17 % Pantothenic Acid (as calcium pantothenate) 10 mg 100 % Calcium (as aminoate complex) 20 mg 2 % Iron (as aminoate complex) 5 mg 28 % Iodine (from kelp) 100 mcg 67 % Magnesium (as aminoate complex) 10 mg 3 % Zinc (as aminoate complex) 3 mg 20 % Copper (as aminoate complex) 0.05 mg 3 % Manganese (as aminoate complex) 0.05 mg 3 % Potassium (as aminoate complex) 1 mg < 1 % Pineapple Fruit 50 mg † Apple Fruit 50 mg † Sunflower Oil 20 mg † Lemon Bioflavonoid Complex (from Citrus limon fruit) 20 mg † PABA (para-aminobenzoic acid) 400 mcg † Choline (as bitartrate) 10 mcg † Inositol 10 mcg † * Percent Daily Values are based on a 2,000 calorie diet. † Daily Value (DV) not established. Other Ingredients: Fructose, citric acid, magnesium stearate, spirulina (naturally rich in essential nutrients), rose hips (Rosa canina fruit), whole brown rice, broccoli, spinach, mango fruit, carrot, West Indian cherry (Malpighia glabra fruit), papaya fruit, Mineral aminoates are whole brown rice chelates.

My son started to Tic after a strep around march end. i had posted his details in other post. he went thtough zithromax 10 days course in mid of april and those 10days he was tic free . After 5 days of stopping his antibiotics some humming returned with very little other tics and after 10 more days he got tic free . Nearly after 2 weeks i started to see him little humming . I was just wondering what they are and will like more input on that. thanks.

hi Patty , I have stopped all the astma prevention meds and allergy medcine to my kid form last month. Right now i only give him 2 multivitimins one 250 Mg vitmin C and half tsp fishoil. It's only 40 days so we are keeping our fingers crossed.though couple of times he was hit with allergies but we did't give anything except vitmin C and orange juice. Only one time he ate some different nuts and we saw allegy poping on his legs and face he had to use Benadryl.

Previous posting http://www.latitudes.org/forums/index.php?showtopic=2303 Starting a new thread as earlier thread was getting too long . As posted earlier my after stopping Zithromax after 10 days during which he was tic free i saw his vocal tics return after day 5. I purposely did't pursue any more antibiotic as i wanted body to repair it self. Went to nuerologist and she gave me a open RX for ASO titers and told me to fill the date if Tic gets worsts. Now after Zithromax his Tic are very light and and when he's at home or around home not there . We went to target and i saw his tic come back . May be he was excited to buy some a Toy as he was totaly tic free in the mall while buying clothes. Saw some of Tics after he was done riding scooter and bike in Skate park with low dips. And saw some when dinner got bit late so may be hunger. One thing i am nearly getting convince is the excitement does cause it. I am just hopeing soon the body will be able to recover it and he should go back to his old self. I would Like to know more about Tic triggers and how to stop and any more about supplemets. right now he's on 250 mg Vit C and regular multivitimin and 1/2 tea spoon Fish oil ( around 800mg omega 3 + more fatty Acids ) . I am holding off on Kids calm right now for some time but will like to know more about B12 . How does B12 help with Tics and recovery? thanks

welcome to fourms , I live in orange county , where in So cal are you and I have not able to find any one who knows PANDAS. I have a appointment with UC irvine doc Ira Lott who i heard might have some knowledge about it but he is booked till july who in east you been talking to. My nuerologist at CHOC has little knowlege about it and she too was shocked to see zithromax work on my son . who in east coast have you been talking to I will like to talk to them too. Only person on west coast i was able to talk was Dr carlol mathews in UC San Franscisco. Keep us posted about your son' sprogress once antibiotics finish or you plan to keep him on antibiotics. My pediatrician does't want to beilve in this and admit that i have more knowledge about this then him so I gave up on him . Nuerologist seems to admit this and trying to work with me. Have you done his blood test for ASO titers ?

Hi given the activity and knowledge on this forum i wanted to post it here about similar resources for ADD . Friend of mine has 21 yr old who was diagnosed with ADD around age of 14 th. He went on some drugs but due to side affects never used it. He's looking for some natural resources to help his kid. thanks kkver

Faith Regarding Basal ganglia i read so many paapers now i hv lost track which one was pointing where. In one of the studies the MRIs were done for kids suffering with PANDAS and there was iinflammation found around that area of our mind which might result in OCD , Tics ( motor and vocal) or Both. Then i started to send emails around and found one UC San Diago doctor think Neal sprindlow who replied to my emails and confirmed it . He is a specilist in Basal ganglia and directed me to a a doctor in San Franscisco for PANDAS.Accoding to them they donot want these strep antibodies to attack the Basal ganglia at every strep infection else it will negative affect on that part of brain .So you have to pick antibiotics to keep strep away and if strep is present it should be treated with full 10 days of antibiotic course.Nancy's girl has been suffering form so long and if it was Panadas it would be better if she can get a MRI done and get a true picture Zithromax trial was just a accident as he was hving a sinus infection so was given 5 days of zithromax but by 3rd tics went away so i spoke to my nuerologist and showed her pandas papers. She agreed with to go for 10 days of antibiotic course. My kid's pediatrician does't want to listen as he still does't know anything about this and nor he wants him self to educate so i gave up on him. Regarding titer counts it was done with in 10 days of strep so accoding to PANDAS theory they go up after 4 to 8 weeks so i plan on getting it done again.

My nuerologist is kinda ok and i have a appointment tommorow with her . will see what she says about antibiotics . she was very happy to see the results last time and was happy the read the article from nimh.gov site about antibiotics. My only concern is if his titers count is low how long it will take his body to recover from tics.

We went thorough 10 days of Zithromax and he was totaly tic free from day 3rd. Now after 96 hours of stopped antbiotic i saw couple of vebal tics. I have feeling they r in the process of returning. I have him on 250 mg Vitmin C and regular multivitamins. I plan to do 1) Take his titers count tommorow. 2) may keep him on 250 mg twice a week on zithromax. Will like to know how long will it take after the strep has cleared for tic to go away if titer count is low? Will it be ok to keep him on antibiotic ( personally dodnot want unless no choice) I will like some suggestions. thanks

mike how's ur kid doing . When did he had strep infection and how much time has passed. I am thinking about blood test for my kid who had strep around 20th march and got tics later. Will post the titers count when i get it.

I am trying to get most possible resources but hard to find. Spoke with Dr Carol Mathews of UCSF and she confirmed the systems and told me to see a UCLA doc James Mac* so will try to call him and see. Mike :Amout of Dose should look something like this. http://intramural.nimh.nih.gov/pdn/pub-9.pdf Antibiotic Prophylaxis with Azithromycin or Penicillin for Childhood-Onset Neuropsychiatric Disorders Lisa A. Snider, Lorraine Lougee, Marcia Slattery, Paul Grant, and Susan E. Swedo Background: The acronym PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) describes a subgroup of children with obsessive-compulsive disorder and/or tic disorder that experience symptom exacerbations following streptococcal infections. We hypothesized that the prevention of streptococcal infections among children in the PANDAS subgroup would decrease neuropsychiatric symptom exacerbations. Methods: Twenty-three subjects with PANDAS were enrolled in a double blind, randomized controlled trial. Antibiotic prophylaxis with penicillin or azithromycin was administered for 12 months. Rates of streptococcal infections and neuropsychiatric symptom exacerbations were compared between the study year and the baseline year prior to entry. Results: Significant decreases in streptococcal infections during the study year were found with a mean of .1 (.3 SD) per subject, compared to the baseline year with 1.9 (1.2 SD) in the penicillin group and 2.4 (1.1 SD) in the azithromycin group [p.01]. Significant decreases in neuropsychiatric exacerbations during the study year were also found with a mean of .5 (.5 SD) per subject in the penicillin group and .8 (.6 SD) in the azithromycin group, compared to the baseline year with 2.0 (.9 SD) in the penicillin group and 1.8 (.6 SD) in the azithromycin group [p.01]. Conclusions: Penicillin and azithromycin prophylaxis were found to be effective in decreasing streptococcal infections and neuropsychiatric symptom exacerbations among children in the PANDAS subgroup. Key Words: Streptococcal, autoimmune, obsessive-compulsive disorder, tic disorder The reduction of rheumatic fever (RF) recurrences by antibiotic prophylaxis against infections with group A beta-hemolytic streptococcus (GAS) was a key factor in determining that GAS played an etiologic role in RF. This was particularly true for Sydenham’s chorea, in which laboratory evidence of an inciting GAS infection was often unobtainable (Stollerman 1975). Antibiotic prophylaxis not only prevented recrudescence, but also improved the long-term prognosis of RF sufferers by preventing additional scarring of the cardiac valves (Veasy 1995). Because of the known effectiveness of penicillin prophylaxis for rheumatic fever (Massell et al 1988), it was hypothesized that children with GAS-triggered episodes of obsessive- compulsive symptoms and tics (the PANDAS [pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections] subgroup) would have an improved outcome while maintained on antibiotic prophylaxis against GAS infections. The effectiveness of oral penicillin prophylaxis has been the subject of investigation among patients with rheumatic fever. A study investigating the pharmacokinetics of oral penicillin V demonstrated suboptimal serum trough levels at doses currently used in prophylaxis against GAS infections (250 mg given orally twice a day) (Thamlikitkul et al 1992) In a previous trial of antibiotic prophylaxis conducted at the National Institute of Mental Health on children in the PANDAS subgroup, subjects were randomized to receive penicillin or placebo (Garvey et al 1999). Oral penicillin administration in this trial failed to provide adequate prophylaxis against GAS, as evidenced by the fact that 14 of the 35 GAS infections occurred during the penicillin phase. The current guidelines established by the American Heart Association for the prevention of rheumatic fever recommend the use of oral penicillin at 250mg taken twice a day, however, compliance is crucial as the short half-life of oral penicillin makes it difficult to maintain adequate trough levels without continual redosing (Dajani et al 1995). The prevalence and associated morbidity of GAS infections and their sequelae has resulted in the development of newer antibiotic regimens, which effectively target GAS while also maximizing pharmacokinetic profiles. Antibiotics from the macrolide class have demonstrated efficacy against GAS infections. One of the antibiotics from this class, azithromycin, has also been shown to provide effective prophylaxis against GAS infections at a dose of 500mg taken once a week (Gray et al 1998). Azithromycin has also been used in children as prophylaxis against otitis media, with high efficacy and low rates of adverse events (de Diego et al 2001). We hypothesized that the prevention of GAS infections in the PANDAS subgroup would result in an overall reduction in neuropsychiatric symptom exacerbations and that ‘break through’ infections with GAS, as evidenced by a positive throat culture or a 4-fold dilution rise in anti-streptococcal antibody titers 4-6 weeks after the infection, would be associated with exacerbations of obsessive-compulsive and/or tic symptoms. Our objective was to determine if the failure to reduce neuropsychiatric symptoms among children in the PANDAS subgroup in the previous antibiotic trial was due to a lack of association between GAS infections and neuropsychiatric symptoms or the result of ineffective prophylaxis against GAS infections (through noncompliance, administration problems, or efficacy of penicillin prophylaxis against GAS). Based on the results of the previous study, we expected that penicillin would function as an “active placebo” and prevent only one-third to one-half of GAS infections. Azithromycin was expected to provide complete prophylaxis, and therefore was postulated to be superior to penicillin in its ability to prevent GAS-associated neuropsychiatric exacerbations. Subjects and their parents were informed of this expecta- From the Pediatrics and Developmental Neuropsychiatry Branch (LAS, LL, PG, SES), National Institute of Mental Health, National Institutes of Health, Department of Health and Human Services, Bethesda, Maryland; Department of Psychiatry (MS), University of Wisconsin Medical School, Madison, Wisconsin. Address reprint requests to Lisa A. Snider, M.D., Pediatrics and Developmental Neuropsychiatry Branch, National Institute of Mental Health, National Institutes of Health, Building 10, Room 4N208, MSC 1255, Bethesda, MD 20892; E-mail: sniderl@intra.nimh.nih.gov. Received September 21, 2004; revised December 13, 2004; accepted December 17, 2004. BIOL PSYCHIATRY 2005;57:788–792 0006-3223/05/$30.00 doi:10.1016/j.biopsych.2004.12.035 © 2005 Society of Biological Psychiatry

I have seen huge ( best since the onset of tics and some ocd) impovement in my kid after 2 days of zithromax makes me beilve i need a doctor who can correctly dignose him. I will try to get tanya murpy too even if she's cross country. Another doctor i am trying to get is carol mathews in UCSF . I will try to go 1st nuerologist and will tell her about this as she was the one who suspected PANDAS and will definately increase this course of zithromax to 10 days.

Ronnas this is what i am trying to find about my kid ,if it is PANDAS / PITANDAS or tic issue. And noone is willing to Listen . He has improved alot since yesterday after the second round of antibiotics for other reason makes me believe there is some thing other then Tics. I have a 5 day course of zethromax and wil ltalk to doc on friday to make it 10 days . worst case i have a back to drive to TJ mexico border ( 80 miles) to get it for next 5 days .

I agree with you faith I tried to go 2 different nuero docs and my regualar pediatrition and only one had idea on this line and that too she did the aso test. I am trying to find some one good in Souhern california if some one has a reference and i am planning on making a trip to San Francisco next week if i get a appoitment there.

I am opening a second thread for this . As most of you know my son's condition fro last few weeks. I started him on second round of antibiotics since yesterday as his sinus infection was getting bad and he was not able to sleep due to bloked nose. After one dose of zithromax ( 18 hours) i have seen 80% improvement in Tics . I will like to know in how many days Zithromax in PANDAS clears up the Tics. I am still thinking on PANDAS angle if they get better tomorow as Tics came last month right after strep throat and 5 days of zithromax. Second after how many days one should get the blood test for ASO or AntiDNAse after taking antibiotic. Last time the ASO test was done 11 days after strep infection and 6 days after finishing antibiotic. tics came after 9 day of infection and 2 days after finishing antibiotics. Now he's on antibiotic since yesterday 17th april when should i get the blood test done. To tell the truth my Doctors are getting scared of me as i am chewing up there brian. In honest way i think not many of them know about this .

As you said patty after 2 calm days they came back . some vocal with little head shake . Running out of ideas but keeping a hope. Trying to contact a Dr in UC San francisco as unable good one in Couthern california. hopefully she will see us. Mean while due to his throat and sinus build up doctor gave Zethromax. So i am thinking if it is panadas related it should go away while the medicine is in use as these Tics came right after last strep throat. too many combinations going in mind but will have to know each one by one. Lets see where tommorow takes us.

By the saturday evening i noticed Tics going down quite a bit and i had noticed this for last 2 days. they use to flare up as soon as i started with suppliments with vitamin C . I stopped the supplements on saturday and only used vitmin C and saw some Tics come back . He went to sleep and next day morning i saw some mild vocal come back after he took orange juice. Sunday i completly stopped the vitmains and minrals except regular vitmins which had normal range. Today i saw some more improvement in motor and vocal till 3 pm PST . Only once a while i hear him clearing throat which could be allergy reason as i have not given nay allergy medicine for 2 weeks ( use to take zertac ) and his nose gets bit blocked while sleeping ( possible membrane of nose enlargment ) but i am not sure if that throat cleing is Tic or allergy . But it is noticible low the previous day. We are keeping our fingers crossed in a hope God has listened to us. Post your inputs on this and let me know if some one has seen like this . thnaks

Still trying ....tics are changeing evrey day one day throat clearing , one day vocal ( hmmmm) with head shake , one day twitching in legs while standing ...Don't know what to do ..kinda pain to see him do tha ...Missed his Baseball ....Need some miracle...

juls I guess L-Carnitine is behind the stucking behaviour. I gave him a little around 200 mg last night ..man what a music i faced today in the Mall . His mood was swinging and was getting stuck on evry second thing. One time he did't want to walk . though it did't had much affect on his vocal tics.

another day with new kind of tics explosion , this time it was constant throat clearing . This got triggered due to allergy as Santa Ana winds kicked in today. I guess we are going through ups and downs Don't know how long they will last.

Ok this thread tells me the reason for explosion of tics of my son. Santa Ana winds kicked in so Cal and they brings in lot of allergies as they flow from east to west towards the ocean. He went out for some time and by evening He was constantly clearing throat . I was thinking it was allergy but the mag + cal provided some help .I guess i will have to watch this trigger as I had stopped Zertac after his Tics started as His allergy and Asthma doc suggested not to use it.

Faith I used Natural calm for 2 days cause i could't get the kids calm and saw no difference between two. Both seem to work the same way . Only kids calm has more C and Zinc in it.

I am not a probiotic expert but i got these from vitamin stores and they are in chewable tablet form and my kid liked it but they need to kept in cool place. http://www.vitaminlady.com/Jarrow/Yumyum_dophilus.asp