cobygurl

Hi, thanks for the response. He has had a couple of throat swabs before and all were negative. 2 ASO tests too were within normal range. This is the first time we've taken the anti bnase and it was elevated. The day before all his tics exploded last fall he did tell me something very bad was happening in his mouth/throat. At that point I knew nothing about Pandas:Pans. I just thought he had a sore throat and the next day it all started. His tics have not stopped since. It all makes me so sad and I remember thinking back in October when this all started, hopefully by his birthday I will have this all figured out but his 5th birthday is in a couple of weeks and I am just feeling so sad about it all. Thanks for the advice, I will ask to have his titres retested.

Hi Nitshel, We did the Advil test with our son the end of May (just a few weeks ago) and Dr. T's urging. By day 3 of the seven day test my 4 year old was 100% tic free! The first few days though we definitely saw an improvement until the day 3 breakthrough which was incredible. Amazing to see after 9 long months! This only lasted 2 days though and once completely off Advil his tics returned. He is now on the second round if Acyclovir and though it seemed to help initially we are now back to some really bad days of ticcing and OCD. Not sure what happened but we did start a homeopathic that maybe is increasing the herxing. I am hoping things are going better for you since your last post and please keep us posted!

Hi, I am a little confused and am hoping someone might be ably to clarify this for me... My 4 year old son who suffers from tics and OCD had some bloodwork done. Came back high in coxsackie which we are treating with Acyclovir and possible myco which we need to do another blood draw for for conclusive results. Now the Dr. didn't mention anything other than saying some children may have strep and dont create antibodies which I think he was implying was maybe our situation because my child's ASO was completely normal but his Anti BNase was flagged as high. The reference range for the Anti BNase was 0-77 and he was 127. Does that mean he had strep in the past? Is that number significant without the ASO? Does this need to be treated? I'm pretty confused . Thank you for your help!

By the way Mayzoo, how long have you been on your antiviral a and are you noticing improvements? What are your child's major symptoms? Ours are tics with some mild OCD.

Hi Mayzoo, coxsackie is what the doc is treating. No antibiotics right now. We are hoping that the Acyclovir will help. We've seen an improvement but he does go backwards some days which has me on the edge of my seat. I really am so desperate to find something that works. I am confused though because his coxsackie titres though flagged high didn't se extremely elevated. We are waiting on another blood test to be done in a few weeks to see if his myco titres are still high.

Thank you so much QueenMother! Any dialogue here is helpful and thanks for the info on the doxy (sp?). We started to see Dr. T recently and so he was the first to say that yes, this could be an infection. I need to recheck his Myco titres before they will treat but he is on the Acyclovir (he finished his first 10 days and is onto his second round for a total of 20 days). He seems to be improving but some of his tics are still present and his improvement is great some days, or he gies sideways or backwards other days. We are are so hoping this will help our little guy. It's been a long and very stressful time but I am sure we can all relate. Thank you so much for responding, means a lot!

Can anyone weigh in? Thanks!

Thank you so much for sharing! Your story gives me hope. We have been seeing Dr. T and have been prescribed out first medication after 9 months of seeing other doctors, trying elimination diets etc... No one thought my son had an infection and it was only after travelling from Canada to the States that we got the tests back revealing coxsackie and possible myco. We are on our second round of Acyclovir for the coxsackie, day 12 of 20, and we have seen some improvement. It's been a long road but it is so nice to hear success stories. It gives me the hope that one day my 4 year old son will be infection/tic free. Thank you for your post! I really needed to see this tonight!

Hi All, I am just wondering if anyone has experienced a full recovery on Acyclovir? My 4 year old is on day 12. The first round was 10 days and Dr. T says 10 more days to make it 20 days total. Initially he was doing much better but some days it seems he goes backwards. If anyone could offer and advice or feedback I sure would appreciate it. I am feeling hopeful and sad all at the same time and so desperately want my little guy to get better. Thank you in advance!!!

Hi, I feel kind of silly asking this question but since some of our children seem to be so sensitive to environmental triggers (mine included) has anyone noticed that swimming in a lake was better for their child than in chlorine or vice versa? My child is 4 and I want to teach him how to swim but I am a little apprehensive because of the possibility of increasing his tics. I know lots of people have mentioned the adverse side effects of chlorine but what about lakes? I'm sure there are several issues that could come up swimming in a lake... Any input on your personal experiences would be great! Thank you!

Hi, After about 9 months of trying of going between tics, tourettes, allergies etc...we finally had some bloodwork done and doctor said it shows my 4 year old has the classic immune pattern of children with PANS/PANDAS. His bloodwork also showed elevated titres of coxsackie and mycoplasma (although they said we needed to take the mycoplasma again to have a definitive answer) Anyways, doctor asked us to try advil for 7 days to see whether or not it made a difference. Surprisingly by day 3 of taking advil 3 times a day, he was 100% tic free for 2 days. As we tapered off the advil, the tics came back but I am wondering, does showing such a dramatic improvement on advil mean that he really does have PANS? He was put on acyclovir and we are now on day 2. I think he is showing an improvement overall but he is still quite the ticcer while excited. I am wondering if anyone has any experience with acyclovir, coxsackie and what you found to be helpful. Any information or input would be greatly appreciated. For months I thought he had tics/tourettes brought on by allergies (he has been on an extremely restricted diet for 8+ months now) and now we are being told it could be an infection...just thrown for a loop but grateful that maybe we are making some headway. Thank you!

Hi, just wanted to mention a quick thing about the copper...they say that copper gets out of control in the body when zinc is too low. Zinc is critical for many processes in the body including boosting the immune system.

Hi, Has anyone seen an increase in tics when initially giving B vitamins, particularly B6? If so, has it gone away after continuing the vitamin. I know my son needs all these supplements he proved deficient but he can't seem to tolerate them - even what I would consider the cleanest ones. Do any of you just supplement through food? Thx.

Hi, My son is 4 and 33lbs. I have taken him to an environmental physician and I was told that I should be giving him 300mg of magnesium or to bowel tolerance. I never gave hom 300mg but have gone to 100-150mg. Unfortunately (not sure if you saw my other post) but my son has reactions/new tics to all magnesium supplements and it seems multi vitamins. Only thing that works for him is Epsom salt baths when comes to mag. I know my doctor said that kids with tics have many mineral/vitamin deficiencies and environmental allergies/sensitivities. I am trying to ramp up the supplements and have seen improvement with doing that and diet. Usually I see a flare up once my little guy is getting sick, has dental work done or has had something to eat that he must be sensitive to. I just track and journal as much as possible to find a pattern. In fact, I consulted with one of the physicians in Shiela Rogers book "Natural Tics and Tourettes" and he urged me to keep journaling and being my own best investigator to best help my son. I guess what I would do is give him the multi (you am ramp up slowly) and see if you see an improvement. At the same time it could just be the food he had at the parties over the last few days that is throwing him off and it will clear. I know how frustrating it can be because I am in the same boat but hopefully the extra supplementation will help and you notice an improvement. Keep us posted!

Thank you JosyJoy and Chemar. I know I have to get his teeth fixed so hopefully he won't have any reaction. He does seem though to have aggravation with any dental work including cleanings hence me being so worried

Hi, First off, I am so happy to have this forum. I have really found a lot of great information and comfort from so many of the people here trying to help one another and our children. I do have a question though and some people may already know that I have a 4 year old who has many dental caries - we think malabsorption and weak enamel. His tics started a few weeks AFTER a fever brought on by his first extraction (not sure if it was coincidence, a bacteria or maybe the conscious sedation/midazolam affect) but regardless we are still dealing with his teeth. Anyways, he has several teeth that need to be filled. With so many reactions he has to certain foods, supplements, I am concerned he will have a reaction to the filling material. I am going to have him tested for biocompatible materials and I have heard that diamond lite is the most compatible of all the materials and least toxic. Has anyone had an experience with having their teeth filled and did they have another other issues like worsening of tics or conversely no worsening once the teeth were filled. Thanks so much. I just feel stuck. I know I have to get his teeth fixed but at the same time don't want to aggravate his ticcing even more.

Hi, I have been giving my son Epsom salt baths since he was 18 months, years before his tic if began (he is now 4, turning 5). How old is your child? I usually put a cup of Epsom in his bath water at night before bed. As far as frequency, I usually give him a nightly Epsom as I was instructed by a doctor that but just recently someone else mentioned 3 times a week at most. I definitely notice an improvement in him. Now my son is not hyper but he does have restless legs and twitches quite a bit during his sleep which the baths greatly help. This is why we started in the first place. Hope that helps!

Hi, I seem to have the exact same problem...I keep on taking away and reintroducing different oils but same reaction. I would be interested to know too if anyone has had this problem and found a solution. Do you give the oils separately, to see if your child can tolerate them or do they usually come in a combination oil? Have you tried coconut oil? I am going I try that next and see if it might help. Please keep me posted!

Hi, Has anyone given 5 HTP to a child as young as 4? I have heard that increasing the magnesium, zinc and B vitamins as the precursor may eliminate the need for 5 HTP. Has anyone had any experience with giving it to such a young child? Again my sons tics are scratching/wiping his face, tongue rolling and finger movements. Also, the neurologist says the face wiping scratching cannot be a tic but compulsions, does anyone agree or disagree? My son just says he is extremely itchy... Thanks again...

Hi, I have taken my son to several specialists including environmental physicians and pandas specialists. I have been given a mile long list of supplements for him to take to improve his tics but he seems to react to EVERYTHING I give him with a new tic. Has anyone had this problem? My son is 4 and if I give him magnesium for example (citrate from both natural calm and natural factors) he starts this mouth pursing/blowing/inhaling tic. The other day after introducing more B's he started a tongue rolling tic. What have other peoples experience been with introducing things? Is this part of the process...I understand die off with probiotics etc...but it just seems that anything minute sets him off. I'm not even giving him full dosages, we have been ramping up slowly. I know he could be detoxing but I am so scared that his new tics will stick if I continue to give him the supplements. Any advice would be helpful. The other thing I don't quite understand is how he seemed to react to nothing 6 months ago and since the onset of his tics in September he is sensitive to everything? Anybody have explanations for it? Thank you so much!!!!!

Thanks so much for your reply! The anti-fungal I gave to him sporadically because I was seeing some tongue rolling and I discontinued it. It was just in the last few days were I saw more of his wiping tic (more than I've seen in a long time) after increasing his probiotic and introducing some other vitamins that I gave him some anti-fungal the other day. That is when the tongue rolling started and today we are on day 3 of this new tic. It just leaves me heartbroken. I am supposed to introduce a new multi vitamin as well and am not sure if I should hold off? I know he is severely deficient in B6 but we have been holding off as we introduce many new supplements. Just don't know if my very cautious approach to giving him new supplements is delaying his recovery. I know Chemar that you had several vitamins you gave your son, did you introduce slowly or all at once? Did you start with the multi?

Hi, My 4 year old son has started a new tic which is tongue thrusting, rolling it around in his mouth and also moves it as if he is trying to feel his top teeth. I am feeling so desperate. I have no idea what may have caused it. We have been introducing more supplements and larger doses slowly and a few days ago he had a day where we thought we were really turning a corner. But now this... We have introduced more probiotic and a new homeopathic antifungal called pleo ex - has anyone tried it? Has anybody had experience with this type of tic - prior to that, he has been wiping and scratching various parts of his body. I feel so sad somedays and silly as it couds I feel so devastated with this new tic. Thank you.

Hello, I am curious if any of your children or anyones tics is "scratching/wiping/itching"? My 4 year old complains of intense itching "all over his body" - his face, wrists, legs, hands, feet, eyes etc... I am at a loss since I am not sure if it's sensory or something really is making him itchy? I did talk to a PANDAS specialist too who says it might be an infection and we are going to test for it. But most of the time, it comes when he is excited or relaxed, like when reading a book... My son also did come back with elevated liver enzymes (ALT and AST - slightly elevated) Alk Phosphatase several times the normal. Anyone have any experience with it? I feel so helpless watching him itch and I can't do anything about it. Thank you!

Hi, we are considering PANDAS now. It has been a few weeks on the natural antibiotic including silver nitrate on the tooth abscess and while it subsided for awhile, it is back. Obviously the best thing is for the tooth to come out but I have read that tooth extraction can make PANDAS /TICS worse -(and in my case I think brought on the ticcing). Just curious - how long would it take to see the if the amoxcillin make the ticcing worse? I got a dye free version but still has all the flavoring etc... I am just terrified that his tics will get worse and not go away but obviously everything we've tried to get the tooth abscess down, although it worked initially is no longer working. Please advise if some of you have tried amox and it's been okay. Also how long do you keep your kids on antibiotic after the dental procedure. Thanks!

Hi, my son has developed a tooth abscess that will need antibiotics and possible tooth extraction. I am terrified because I am afraid the antibiotic will make him tic more (can't get anything without dye and flavoring) as well as he had a tooth extraction done in May 2012 on Midazolam (conscious sedation) and is was after this procedure that his tics started - within 3 weeks. Just feel very scared that this might make it worse but at the same time, I have no choice - anyone ever deal with this and what did they do? Thanks.