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