Lilyma

Yes, I think my son's tics are definitely allergy related. I have been more convinced of this conclusion recently and am starting to try and treat for this. I have him on allergy meds (claritan) so far. I am in the early stages of trying to find out what works. As I add things, I will see what helps and what aggravates. I had my son allergy tested, and the day after he got the pollen tests done (which he was found to have a moderate reaction to), a certain, distinguished tic in his eye started and has been around every since. I do notice a connection between milk and vocal tics. I am just starting down this road.

I was hoping to hear from you! How long can a transient tic last? Does this seem like a long time for the same tic to be around? Would allergy meds be the thing I should start treating him with to see if he responds or would you try adding a new supplement that is an antihistimine? I've tried vit. c, but didn't notice a decrease. Do you know if people have been successful in eliminating a transient tic due to allergies?

Hi everyone, My son started a new tic last summer around August. the tic is a slow shutting of the left eye. It looks like a slow deliberate wink. It has not followed the waxing and waning I thought tics take. This tic has not changed in 8 months. It is the exact same tic in the exact same place. Has anyone seen this? He had a mouth tic that came and went, but the one with his eye is sticking around. Anyone have experience with tics persisting for this long and following the exact pattern on the exact same part of the face without stopping, even to be replaced with another tic?

I am in the same boat. Not sure why Dr. T isn't responding. I have 11 more days of Biaxin left. I just filled the second script of ten days on my own as I did not here from Dr. T. My son's tics have returned and they are really bothering him. I have asked Dr. T for his lab work a few times, but with no reply. My son's moods have stabilized, but his tics came back this week. I feel so helpless and bad for him. I will try to boost his immune system with vitamins and hopefully this is just a little bit of a back slide. Dr. T said this would help with his tics, it did a little, but they are back. why were on biaxin...myco P??? your sons tics went away.....for how long??? doc t thought biax would help with tics...... .i don't think they helped my ds tics so much,,i don'tt know...but his mood was a little better,, i think....even though we are going after myco p...igg........the aug really seemed to help ds.also.....so i wonder if it is really messed up t-cells caused by so many past streps or silent strep...if that is possible...and the myco p just also happens to be there or just stirs up the strep some people are having real success with biax We were treating for myco P, from what I understood from Dr. T, a secondary infection. ds was negative for Igm and pos for igg (something with the #41 too), Dr. T has not sent me the lab work so I don't know exactly. anyway, Dr. T said it should help with the tics. he told me initially i should see everything being pretty good after 10 days of antibiotics, if indeed this is what was causing rage, tics, anxiety. the rage has seemed to decrease, the tics got better (about 60%), never being eliminated entirely. Now, the edginess is back and tics are bad again. My son has been tested for strep antibodies twice in the last couple of months and both his pediatrician and Dr. T said it looks like he has never even had strep. I am so confused on all this. I just started him on Intuniv because ds psychiatrist said it would help with his edginess and focus. This is the only med I am willing to try. Now with the tics back, I am re-thinking it. I thought I was seeing success with biax, but good results never seem to stay around. Right now, the facial tics are what ds struggles with and the rages have subsided. What is silent strep?

I am in the same boat. Not sure why Dr. T isn't responding. I have 11 more days of Biaxin left. I just filled the second script of ten days on my own as I did not here from Dr. T. My son's tics have returned and they are really bothering him. I have asked Dr. T for his lab work a few times, but with no reply. My son's moods have stabilized, but his tics came back this week. I feel so helpless and bad for him. I will try to boost his immune system with vitamins and hopefully this is just a little bit of a back slide. Dr. T said this would help with his tics, it did a little, but they are back.

My son's doctor wants to start my son on Intuniv for ADD. My son has tics, I thought tenex helped with tics. Please inform as to what you know, I don't want to start anything that will cause my son anymore tics. His doctor prescribed this certain med because it is a non-stimulant. How quickly did you see focus improve? I am so hesitant about giving my son any type of meds because I don't want anything to backfire on him.

I think I answered the last question wrong. I voted no , that nothing was out of range when I should have checked the EOS. Sorry... Anyway, results for my son were high EOS, out of range during an exascerbation. Hope that helps.

How long has your daughter been on the Biaxin? My son had labwork that showed mycoplasma (positive IgG but neg. on IgM). I am waiting for a copy of the results to be sent to me, but in the meantime, he has just finished day 7 of biaxin. I've seen some improvement in his mood and facial tics. He told me last night that his vocal tics are bad. I can't tell though, if I am just hopeful for things to be good because then he came home from school yesterday really quiet, and was obsessive about the time this morning and getting to school. All the sudden things were very tense like they used to be. He only has three days left of the Biaxin. I am praying this was the cause of his struggles and this antibiotic works. sometimes I think I have forgotten what the norm and better is..I try to remind myself that if he is recovering, it won't be an overnight change. I guess in a way I was hoping for that.

hope that answered the questions ok That helps tremendously. I have a couple more questions, I hope you don't mind, I am looking at everything individually, trying to sort through everything. First thing, I asked about samE and the person helping me at the Vitamin shoppe said he's never heard of a teenager taking this. Is this a supplement your son does now? Should I consider something different (son is 15). Also, did I ask about the right supplement-he said it was used to treat mood/depression. Second, I noticed in your post you said that detoxification from heavy metals helped. What is this process, and how do I know if he needs detoxification from heavy metals, I am not familiar with this at all. Please inform... Have you ever heard of the acetyl-l-carnitine decreasing appetite as a side effect? My son swears it is taking away his appetite in the morning. I am using this to help with ADHD. Did you find good results/any side effects with the ginko biloba? Last, you mentioned that 5 HTP can have adverse side effects, what would I look for and is this supplement taken in AM or PM. With much appreciation for your help Lilyma

I would love to pray for your son. ...and, oh do those epsom salt baths help after a long day. My son is starting to look forward to them! One day at a time...

Hi Chemar. Thank you for the Vit C correction, yes, I meant histimine blocker . I will try vit c for allergies, I think I read 1000 mg. can be given. Any thoughts/insight from you on this dosage? My son is 15 y/o, 130lbs. I did stop the Bon-Tech vitamins, and feel I need to clarify, that at this time, I don't see a response in helping with the tics. Right now we are trying to treat tics, as that is our main priority due to the pain in the eyes it is causing my son. However; when I started the supplements, I was weaning off of serious, high doses of meds and I believe my son was going through some withdrawal, which would put stress on his system, possibly provoking tics. After I introduce vitamins, minerals, amino acids one by one to assure no sensitivities to anything, I would try her vitamins again. I don't think they had a fair shot with my son and the time he was going through. I am so grateful you mentioned magnesium can cause drowsiness. My son is so tired all the time to the point of concern, and I realized I have been dosing him with magnesium high in the morning, then throughout the day. Did you give all 400 mg. at night, plus the epsom salt bath? The zinc supplement I was giving had 130 mg of magnesium in it also, that is why I associated tiredness with zinc ( I didn't even realize it had magnesium in it!) I got these supplements from his allergist, and just tried to give and spread out as much as I could so son wouldn't be taking so much at once. One more thing (please...sorry if I am bombarding you with questions) The P-5-P I have been giving also contains magnesium. Did your P-5-P supplement contain that also? His is in the capsule form, did you have a tablet form that can be broken in half? Can I clarify with you, 800 mg Calcium/400 mg magnesium.. I think I had read don't take them together? Is that right? You mentioned you got some things at Publix. I am also a Floridian, did you get NOW brand there, or do you order through iherb.com Also, you've mentioned SAMe, what is this? Is that ordered on i herb as well? As far as testing, we did test for strep....no history of strep, low titers for strep antibodies. We did allergy testing, he is moderately allergic to mold, mild/moderate on pollen, lactose intolerant and not allergic to wheat. We did test for yeast overgrowth, none. He does get vaccines, but none lately ( I can't even think back to the times to know if any correlation, other than I think his eye tic got worse as far as increasing in amount of ticcing after flu vaccine this year). Last thing, now that you mention it, two days after his rage attack, his stuffy nose came back with major complaints about it. I think it is some type of allergy...hmmm. The information you give is so valuable. I feel like I've started a detective job and I have some type of guidance with the information you put out. Thank you again for your help. Lilyma

Hi Chemar, Thank you so much for you extensive help. I am starting from scratch with supplements for my son. His hard single blinking eye tic (present in one eye only) has now gone to both his eyes as a looking down and sideways, " painfully, crossing" tic giving him severe eyestrain and headaches. I was so happy for a split second when he told me his blinking eye tic went away,...only to be replaced with another painful, strenuous eye tic. So, he is off all meds and down to 1 mg of Tenex for a week, then he will be med free. I have not found results with Bonnie's TS supplements at this time, so I am going to add supplements, individually, one by one. I have cleaned up the diet, the Epsom Salt baths do help... Here's my question. Tomorrow morning, I will start off his morning with : Magnesium, Flaxseed, acetyl-l carnitine and P-5-P Is the P-5-P best to give in the Am? I am giving acetyl-l-carnitine for ADHD, will this help with his moderate vocal tics as well? One more...Is Zinc better to give in Am or Pm? Any sleepiness affect to it? He is also on augmentin as the pediatrician agreed to short term antibiotics to see if any response (had cultures, titers, all came back neg, and low)-has constant "stuffy nose" He takes Claritan for allergies, I heard vit c acts as a histimine. Do you know if this is the case? He tried allergy shots, the allergy testing to the pollen screen brought 1st major, painful eye tic on, did allergy shots for a while, but didn't continue long enough to notice a difference. At this time I will avoid Taurine and Fish Oil and add those later just in case he is sensitive to them. After looking over my regiman for the morning, do you think that is a good start? Thank you for all your help. We are so distraught, he had a terrible week last week, we are all still trying to get over that ( went into a rage that we don't see often) Again, thank you so much, any advice/experience you've had with these would be so helpful and appreciated... P-5-P in the Am/acetyl-l carnitine for vocal tics/ Vit. C as histimine/ and Zinc am or pm Sincerely, Lilyma

Hi Peglem, Thanks for the information. So, are the tests you mentioned above tests that I need to ask for by name? What are those, tests covering the immune system? I wonder if I got those and don't know it because I can't read the lab reports. I don't have any doctors in the area familiar enough with PANDAS, so they are testing for what I am asking to look for . I will look through some posts and try to figure out what to ask for next. I was suspicious of the EOS also, it actually has been "flagged" on the report because it fell into a high range. The doctor never mentioned it, I only saw it because I got a copy of the report. Thank you again for your help.

Hi Lilyma -- I'm no expert on the diagnostics test list, as we've not had many of the tests conducted that other families go through . . . yet. There're several threads here listing the immune testing that is typical for PANDAS, so you might try scrolling through the forum for those; if I were more adept, I'd post a link, but I haven't gotten that down yet! Anyway, throat cultures are notorious for resulting in false negatives, primarily because they're not always taken properly (there's a thread on this here, as well!). Also, our experience with my DS12 has been that he has ALWAYS been entirely asymptomatic with strep, so throat cultures never came back positive for him at all. I'm not familar with the blood tests you cited above, but I can tell you that the blood tests we sought, on the advice of Beth Maloney of "Saving Sammy" were ASO Titers and AntiDnase. Folks will argue that all these tests do is confirm whether or not there's been recent exposure to strep . . . that they don't really confirm that strep or immune issues are in the mix . . . and I'm sure they're right. That being said, the fact that my DS12's ASO titers came back at about 4 times the normal range ("normal" depends on the lab, but typically tops out at about 200) was sufficient for our pediatrician to agree to abx treatment, and that was what we were after at that point. Whichever route you go, don't take "no" for an answer if your gut is telling you PANDAS is something you need to explore. Thank you for your encouragement. I am discouraged because after the tests came back, the psychiatrist wants to put my son on ORAP and I do not think he fits the full criteria to diagnos TS. I just want to explore this to the fullest. I'm always trying to figure out the next step lately...it will hopefully pay off. Thanks again for your response.

Hi, I am hoping to get help with some results that came back. I am wondering if I should put the PANDAS diagnoses to rest, but I have read that tests don't always show what we think we are looking for. Basically my son's pediatrician ran a rapid strep=negative, a strep culture=negative, and a "mini" immune screen. All that I can see that relates to strep is Streptozyme which came back "Negative." , and Antistreptolysin 0 Ab which showed <5.0. Are the these the strep titers? Also one area came up high which was EOS. Any help on interpretation would be appreciated, did I get the right tests? Should I go farther with testing? thank you for your help with this, Lilyma

Is the blood test able to indicate whether the child has ever had strep at any time in their lives, even if the child tests negative or is asymptomatic?

Hi Tigger, After reading your post, I feel like I am reading my exact story. I have a 15 year old and have been dealing with the same issues since he was in 3rd grade. I am just now becoming aware of PANDAS after finishing Saving Sammy. I am calling the pediatric neurologist to start testing for PANDAS and I have no idea where to start either. I have read all the posts in this forum on parents new to PANDAS. On Monday, I plan on asking the doctor to run blood test for Strep and go from there (any other recommendations from the doctor or from people on this forum will be run also.) The 1st step in my plan is to see if strep shows up in the test and to see what his titers are. If strep does show up and low titers, I will come back to this forum and read what the next test is that I should be asking for. I am SO OVERWHELMED and feel lost because I don't know enough about this as far as being able to ask the doctors to test for what I want. I have a son who is suffering severely while trying to succeed in school and continue on with his sports team that he has invested everything in. Please keep posting and let me know the steps you are taking. I am recording every bit of information I get from here as to know what steps to take, keep taking, etc. There are so many other things I have just discovered that could be at the root of the tics, OCD, learning difficulties, etc., it is hard to even believe. Glad you posted. Our children have even had the same ilnesses. I have currently started supplements, so far haven't seen a huge difference, but I was supplementing based on a diagnoses of Tourette's/tic disorder and someone had pointed out that the supplements may not help if the cause of the symptoms are from a Pandas infection...makes so much sense! So here I go. I've been down every path except the Pandas, so please let me know if I can help in anyway. You have helped me just knowing our stories are so similar. Hang in there. Our kids and all the other kids that have to bear this awful burden on their sweet shoulders will get through it. We will make sure of it. Hi, Thanks for responding. I feel at a loss sometimes for my daughter. I thank God everyday that she is so strong and as confident as one could be. Seeing her interact at sports and being a leader makes me so proud of her overcoming some of these emotional difficulties. I just wonder how are these poor children able to wake up everyday and deal with this? They are true fighters:) As far as your response, are you saying that your son does not have full TS, but Chronic Motor Tic and OCD like my daughter? I know there are variances of these, but all I read is about TS more so than just motor tics. She never has had to vocal part. I assume the same treatment? There has to be better information out there than I can find. My daughter has never had any flu vaccinations. I never thought they were really necessary, maybe because I never had them and we are all generally really healthy people. This latest one, I chose not to do it because I saw that one cheerleader (either Pro or college level) end up getting a movement disorder because of the flu vaccination. Ugh Scared the begeebees out of me. Normally I would say, yeah, get the flu if you think you would benefit. No more. I cannot bare the idea that I could cause more harm than already suffering from. Anyway, all of her routine vaccinations have always been administered. Unfortunately, never did I connect the dots to when this started and what happened before it started. I wish I would have known to make some connections then. A little too late for the past. I have brought her to two different neurologist (pediatric) at Children's Memorial, in Chicago. First one at 8yrs old, then diagnosed with motor tics. They were very mild, therefore no treatment needed. They did change a lot, most people did not see what she was doing. As of this past summer is when it seemed to really be more expressed. Probably because some of the movements involve her eyes, hands to face and neck. The 2nd Dr said also motor tic, but some OCD. She counts in her head a certain number of times, or does a motion or touches something. Nothing yet too horrible, but still enough. We are working on training herself to be the BOSS and tell her if her body says to do it 3 x's to say no only 2 x's. This will be a process, but she is so willing to challenge herself. What is so weird, is when she is involved with sports, she is a normal girl. No signs of anything. Now if we are sitting quietly in church, we must sit in the back row and remind her to relax and breathe. This really helps her to get a grip. We just took her to a neuro-psyc doctor. He was wonderful. He took two test to rule out any motor or attention deficit issues, which she passed as expected. But also, he talked to her clearly and had her describe what she is doing, how she does it, etc. I was really impressed. He is the one to suggest PANDAS testing (blood work and throat culture). So we are at this stage now. Hopefully we can get in there soon for that testing. I am relieved, because my regular pediatrician would not help in that area of blood testing. Said you cannot find out anything from that?? So is the blood work something different and is it more costly? If you find out about your blood work/strep test, keep me posted too. Good luck and have a good weekend. My son has never been officially diagnosed with TS, more of a tic disorder. It's never been a definite diagnosis. He started with throat clearing in third grade which only I noticed. I am a teacher by profession, I picked up on it after a couple of weeks, when the throat clearing became excessive when he would do homework. The vocal tic subsided on its own. By the end of 5th grade he had facial tics, they became severe that summer. He was in pain so we put him on a low dose of Risperdol thinking tic disorder (I guess???, like I said never a definite diagnosis).We needed to manage the tic because of the pain at that point. Anyway, that was the beginning. From then, tics disappeared for about a year, came off the meds. Tics came back mid 7th grade, along with vocal tics. Back on med, low dose of Abilify, med worked, tic subsided. Off the medication and now in 9th grade both(severe) facial and vocal, some OCD tendencies are present, tried both meds again, no response at all in a decrease in the tics, even on much higher doses. So he is not responding to medications they use for Tourette's or Tic Disorder. At the last doctors visit, I brought up PANDAS and the doc offered to order the titer blood test. I want to find out if he has ever had a strep infection. To my understanding, which may very well be inaccurate, the throat test could come back negative, and with the blood test, the titer number could show up low, but the draw will at least be able to tell me if my son has had strep. My understanding is you can find out something (strep) from the blood test. I could be wrong... please someone offer me the correct information if I am:)

Hmm, not exactly. The groups are divided into those with OCD only, those with OCD and tics and those presenting with only tics. In addition, often the tics are vocal (although certainly many have motor tics or motion abnormalties too). There certainly are specific blood tests but they only add weight to the PANDAS or PITAND diagnosis, they aren't in and of themselves conclusive. Again, I refer you to the flow chart and the other documents as they are pretty explicit on the tests and the confidence intervals. I have looked at your flow chart, taking it box by box and trying to decipher it, as it is a wealth of information (thank you truly, I have been researching and learning so much from all your links and information). So, starting with the 1st box, after finding out what GHBAS is, it looks likes the first step is to have the family members throat cultured for Strep. Am I reading this right? My reasoning for wanting to go directly to the the blood test (the one which will show a titer number) is because I don't think any of us will test positive for strep because we are not displaying any symptoms. Neither one of my kids have ever had strep throat to my knowledge. I am worried that tests would come back negative, and paranoid that all offers of further testing would stop there. My sons doctor asked me at his last appointment if I wanted him to prescribe a test that shows the titer, I declined at that moment because I wasn't knowledgeable enough and I wanted to go back to him educated on what he was offering. (He offered this because I asked him about PANDAS and the possibility of that diagnosis, as I was at the VERY BEGINNING of learning of this and trying to connect some dots.) I had read that even the titers show up low and docs may discard the possible PANDAS diagnosis. Am I reading all this right, is my plan to start with the blood test a good one, along with getting everyone throat cultured for strep?

Hi Faith, Thank you for you helpful information. My story is so similar to Tigger's. I will ask the doctor Monday for the test you just informed about. As far as vaccines, I have had my son vaccinated every year for the flu and this year along with the flu (on the same day), the H1N1. Now that I look back and think about it, his tic got so severe, he was in pain, I almost had to take him to the hospital. I do believe it had a huge affect on him. I will not vacinnate for flu anymore and he is done with standard immunizations for awhile, but I definitely think it exacerbated his symptoms. Just another piece of the puzzle I am trying to fit in. I never would have linked that to his symptoms untill I read this forum. Thank you, thank you, thank you. Lilyma

Hi Tigger, After reading your post, I feel like I am reading my exact story. I have a 15 year old and have been dealing with the same issues since he was in 3rd grade. I am just now becoming aware of PANDAS after finishing Saving Sammy. I am calling the pediatric neurologist to start testing for PANDAS and I have no idea where to start either. I have read all the posts in this forum on parents new to PANDAS. On Monday, I plan on asking the doctor to run blood test for Strep and go from there (any other recommendations from the doctor or from people on this forum will be run also.) The 1st step in my plan is to see if strep shows up in the test and to see what his titers are. If strep does show up and low titers, I will come back to this forum and read what the next test is that I should be asking for. I am SO OVERWHELMED and feel lost because I don't know enough about this as far as being able to ask the doctors to test for what I want. I have a son who is suffering severely while trying to succeed in school and continue on with his sports team that he has invested everything in. Please keep posting and let me know the steps you are taking. I am recording every bit of information I get from here as to know what steps to take, keep taking, etc. There are so many other things I have just discovered that could be at the root of the tics, OCD, learning difficulties, etc., it is hard to even believe. Glad you posted. Our children have even had the same ilnesses. I have currently started supplements, so far haven't seen a huge difference, but I was supplementing based on a diagnoses of Tourette's/tic disorder and someone had pointed out that the supplements may not help if the cause of the symptoms are from a Pandas infection...makes so much sense! So here I go. I've been down every path except the Pandas, so please let me know if I can help in anyway. You have helped me just knowing our stories are so similar. Hang in there. Our kids and all the other kids that have to bear this awful burden on their sweet shoulders will get through it. We will make sure of it.

Hi I have been following this site for a while and trying to help my son for awhile. I started him on Bonnie's vitamin supplements 3 weeks ago and haven't seen results so far, but I know she said it could take time. I am definitely clearing his system out as I have had him on medication in the months of Oct, Nov, Dec. They did not work for him, he suffers with a severe eye twitch, leading to a swollen, painful, bloodshot eye. I am now reading posts about PANDAS, wondering if this could be the root cause of the things he deals with. I have researched, been to doctors, tried different things, thought he had TS, tic disorder, OCD behavoirs, and now I am wondering if he could be suffering as a result from PANDAS. I currently have him on Zithromax (he's about 5 days into it). He has been to psychologist, neurologist, allergist. I don't even know what his diagnosis is at this point and I am overwhelmed not even knowing what he needs. We have tried everything it seems and now my mother's instinct is telling me to start over and I guess rule out PANDAS diagnosis. He responded to medications (Abilify, Risperdol) in low doses three years ago and didn't respond at all this last round. He had such severe side affects, I took him off with the help of the doctor, and I will NEVER put him on them again. He is currently on Intuniv to help with his ADD, thinking about taking him off that, but I know it helps with tics, so I don't want to shock his body so much that even more come back. I honestly think his body is "detoxing" and maybe that is why he is not responding to supplements right away. I am currently reading Saving Sammy. I am so sad because I feel like nothing is helping him. He is trying everything myself and the doctors come up with and he is angry that nothing is helping. His doctor wants to put him on Orap, but I don't want him on any more heavy duty medications right now without trying the natural path. He is not allergic to wheat, so I don't feel that needs to be removed from his diet. I've started eliminating things from the diet, dairy right now, but I still don't see results. TV and video games have been gone for two nights, he still has motor and vocal tics. I feel so sorry for these kids who just want a normal everyday life of going to school and being able to talk to people normally. He hides his face, puts his head down all the time, can't look people in the eye. I won't give up, I just need a second, third, fourth wind to proceed. Anyone ever see the vitamin supplements not kick in right away and then work gradually? Also, the zithromax, does that usually take time as well? Any words of advice would do me a world of good at this point. I have contacted the center Dr. Murphy works at in Florida, I am just wondering what we are in for as far as testing. Truly glad to have at least found this site, all of you are angels and such dedicated parents. I'm in the same boat, just hoping to have a good ending to tell at some point.