Loren

Dear Dedee, I, too, have that same problem with my daughter. Well, I think it is the same. Does your daughter complain of itching? Does her problem come and go and sometimes wake her up at night? I have had my daughter to the pediatrician who couldn't diagnose her and I called my gyn who also couldn't diagnose it. I was given nystatin to try to relieve the symptoms but my daughter says it doesn't work. How do probiotics work for that and for the ticcing? (my son tics). Thanks, Loren

Dear Ad, I bought the Natural Calm from Iherb recently. I have to say, I think my son is the only child on these message boards who does not like it. He took one sip and gave it right back to me. I tasted it ( I had mixed it with iced tea) and my husband tasted it, and neither of us liked it either. Luckily, I had bought the mag pills as a back up, so they came in very handy. Also, my son doesn't like the viactin calcium chews. I took one of those too. Actually, I take everything he takes at least once to try it out. Now I did like the calcium chews whereas he really, really hates them. He cuts each square into nine little pieces and swallows them. Unbelievable. I just bought calcium pills tonight, though. Loren

Dear C.P. How did you find out your son has Oxidative damage? What is that? {Congratulations on conquering the smilies. Took me a few tries too!} Loren

Faith, She just said that the D-nase was negative but the Anti-strep was positive. She didn't talk at all about the numbers and I didn't even know to ask her. She said that a lot of children's Anti-strep come back meaning they have had a strep infection but that it doesn't mean anything really important. And she said she didn't think he needs an antibiotic (when I asked). She did recommend that I go to Childrens Hospital of Phila but it takes many months to get an appointment there. All in all, Tyler is doing well. He tics, but they are not off the wall like they were in the beginning (jeez, a whole few weeks ago, it feels like forever!!).

HI C.P. She is going to mail them to me. I just went to the link that helps explain the tests, but now I'm more confused than ever! Do you know anything about them? Loren

Hey Everyone, Ok. I was finally able to get the results from the blood work. But now I am confused. The D-nase came back negative, but the Anti-strep came back positive. The pediatrician didn't know what to do. I don't know what to do. I asked her if Tyler needs a round of antibiotics and she didn't think so. Does he??? Loren

Just a couple of weeks after his 12th birthday, my son started with tics. (His bday was at the end of February) But we started him on a multivitamin that very day, add I added mag & calcium and over a period of two weeks his ticcing calmed down a lot. He still tics but it is not as devasting as they were. I don't know at this point if his tics are in the waning period or if they have decreased in severity b/c of the vitamins. Or does it not matter when it comes to waxing and waning?? Ugh. I'm still learning the terminology at this point. Loren

Faith, It is actually my step father who was involved in his local chapter of TS. His daughter has TS. I've been asking around in my family, and no one know of ANY relative who has had TS. This is all so confusing. TS would be the last thing I would think would happen to my kids. Anyway, my girlfriend also doesn't want a label put on her daughter. The teacher knows, of course. But poor Katie has been bullied a lot in school. Not so much this year, but definitely last year. My girlfriend was getting very upset. Katie is 11 now, ( I think) and has been battling this for about 3 years. My gf has her on different supps and they seem to be doing the trick. They tried medication, but the side effects were too severe. I don't think Katie's tics disturb the class. She does have vocal ones occassionally, but they may be of the mild sort (no yelling). I don't know if any of the info helped you, probably not. I'm sorry. Everyone has given me such wonderful advice, I wish I could help back. Maybe one day months or years from now when someone new has a problem and I can give them my months and years of research? Loren

Lenny, What type of supp's are you giving your child? And how long has he been on them, if you don't mind me asking. Loren

I'mmmmm baaccckkkkkkkk. I cried on the way home........ from relief!!! Yay! It's a different, better-kind-of-cry. I LIKE THAT CRY!!! I have my script in hand for the blood work. I can't believe that a little, dinky pediatrician from a teeny, tiny town (Bridesburg, Phila., PA) knew MORE than the hoity-toity- $230-a-visit neurologist. She said she just got back from a presentation on PANDAS at the Children Hospital of Philadelphia. Phew! Imagine my relief! Anyway, my hubby is coming home early to take Ty to do the blood work tomorrow. Ty will cry from a mosquito bite, much less.....blood work. In fact, a few months ago I hit him over the head with a limp piece of celery and he collapsed on the floor, crying. Oh, the drama from a 12 year old! So is this correct? If Tyler tests positive for PANDAS, then we start a round of antibiotics and take it from there. If he tests negative for PANDAS, then I need to assume that he has Tourette's or a tic disorder. If that's the case, I should focus primarily on his diet and nutritional supplements. Is this right? Oh, btw, the doc gave me a script w/ enough refills for a years worth of Ambien. Yay! You're gonna see the butterfly flying above my head like in the commercials (or is that Lunesta????) Either way, no more restless nights for moi'. Well, it's time for vision therapy with my other son. A mother's job is never done.....

Hey Carolyn, I did call. I talked with the nurse since the doc wasn't in yet. She already warned me that they may not decide to do the blood work. I am banking on the fact that my doctor is an extremely warm, kind-hearted doctor. I've used her for the past 12 years. I have all of my information that I printed out, and I've spent half the day thinking about what I will say to her. I don't understand why the doctors don't want to get the blood done? Why? She doesn't do blood there, she would write me a script for the lab. Why not do that if you can rule something out? Is this an oddball test? Do the labs know how to do them? What's the problem, cupcake? Do you know? I surely don't. I'm sure I will after this is all over though..... Keep your fingers crossed for SOMETHING. Oh, and I take back the post where I said Ty's tics have slowed. He must've had at least 4 in the 30 seconds he was home from school today. Could the fact that he didn't take that multivitamin this morning have an impact so soon? Loren

. This is my understanding, and I may be wrong The blood test will show, if there are elevated strep antibodies, but if there is an active infection, they will just treat it with an antibiotic anyway, and say it's normal for the things the blood work tests for, to be elevated at this point anyway. These markers or antibodies, are supposed to fall, after the active infection is cleared, but don't in the case of PANDAS. You may be better off, to only pay for a 72 hour strep culture, at this point. If you see improvement with antibiotic treatment (assuming the culture is positive), but the symptoms reoccur after the course is finished, then you may want the blood work done, to see what the titer levels are. I hope someone will recommend how long to wait in between, as I really don't know. Come on PANDAS mama's....we need some advice here! Kim, The other doctor checked his throat and said that he didn't have strep. I am thinking the PANDAS only b/c he was complaining of a sore throat six weeks ago. I was boggled down with work and kinda/sorta blew him off ~~blush~~. Who woulda thunk it???? I seriously don't think it is PANDAS, but girlfriend ~ if I'm gonna undergo the next 10 years of my life dealing with this, how many times would I look back and wonder if I didn't rule it out??? I need that in order to sleep at night. Which, by the way, I'm still not doing...... Loren

Okay, People.... So today is another day. I have a 5:30 appointment with another pediatrician for Tyler. I explained the problem over the phone and said I would be coming in for a 'prescription' for blood work. This is the pediatrician that Ty has had since he was a baby. The nurse said that they are unfamiliar with Pandas, so I printed out 4 different articles and highlighted all of the necessary information for them. WHO WOULD HAVE THOUGHT IT WAS SO HARD TO GET BLOOD WORK ORDERED?????? OMG!! This is just bizarre. I am frustrated. (or could you not tell??? lol). Really. This whole thing is insane. I am not saying my child HAS pandas. Really. I just want to RULE IT OUT. JUST RULE IT OUT!!! If it is pandas, it may be more treatable than T.S. or just a tic disorder. And you know, there is probably a small chance it is pandas......but still!!!! Why do I have to go to 3 doctors (or more if this one won't agree) just to get a simple blood test????? This is just such bulls***. On another note, I did order the mag calm today, and some mag pills, 300 mg. Tyler left for school today without taking his multivitamin....grrrrrrr. Although he did finally take an epsom bath last night ...... yay!!! Tyler is ticing a lot less than last week, though. The tics come, probably about every 15 or 20 minutes, vs. every single minute like before. And he is doing the head shake less....... he does the 'shove the shirt under each arm pit' more. I prefer that over the head shake. It is less noticeable to others, I think. Well, thanks for letting me vent. I feel better now. And yes, I was definitely 'shouting' in those capitalizations, above. Jeeez. Who would have thought my life would be like this one week later? (week and a half, now, and counting). I should start a journal, since I am probably at the beginning of something that is going to last a long, long, l o n g time. Loren

Hey Faith, My best friend's daughter has T.S. so I was very aware of the symptoms associated with it. As soon as I saw Tyler ticing last Sunday, my girlfriend was the first person I called. She gave me all of the advice in one hour that took her almost a year to accumulate. She is also the one who told me to come here, where I have found a ton of information. I was only able to get a quick appt with the neurologist b/c he had a cancelation. That was just a waste of time, though. But I am going to call Tyler's old pediatrician (since the current one wouldn't do the strep test). So let me get this straight so that I don't sound like an idiot to her. I am asking for a blood test to check strep titers? I am asking for an ASO, ADB, and a streptozyme test? Is this correst? All three? Also, my girlfriend has her daughter on Country Life Mag caps 300 mg. Is this what I should give Tyler? My girlfriend also gives her daughter P. Gilham's Natural Vitality Calm Kids when she doesn't give her the capsules. Should I buy this too? What do you give your child? Tyler's head tic has calmed down a lot. He did it a few times yesterday. He has added a new tic but it is not really noticable to others. In fact, I'm finding that b/c others are not around him that much (parents of his playmates, his teachers, etc.) they don't really know what are his tics or not. They are telling me they don't see them (at his soccer and hockey games) when I am standing right there and I am seeing them. This is a double-edge sword. I am glad that his tics look normal enough as to not arouse attention, but I think these people think I am crazy (I am surely happy enough to live like this!!! 'Letting other's think I am crazy in trade for a child who's tics are not that noticable!!!!) . The teacher says she doesn't really see them. But I saw Tyler do it right in the classroom when I was talking to her (I was picking him up for an early dismissal for the neurologist appt). Anyway, my step-father was the V.P. on the board for Tourette's when he lived in Canada, so he was also a huge help to me. Please let me know about those three blood tests. I am going to call the old pediatrician after I hear from you about those. Also, please let me know about the mag. Thanks for all of your help & support!

Hi again Loren ad_ccl aka Alison knows truly from experience about tics induced by PANDAS ie strep I just wanted to mention that she, as well as Ronna, and also MANY other parents I have heard from, have all reported that azithromycin ( aka zithromax, z-pack) has been the most successful antibiotic If you search here for PANDAS, azithromycin, zithromax you will get lots of info Claire has written some excellent information re screens, video games, TV, computer, movies etc and photosensitive related ticcing. Again if you use the search feature and enter her username and any of those key words and you will find a lot of really valuable experience, which a number of other members have benefited so much from as they have realised the impact photosensitivity to screen flicker has on their children's tics you sure have come to the right place for a wealth of shared experience and anecdotal evidence that most conventional doctors truly just dont understand and often discount But as you go thru each of our experiences along with the many articles(thanks Kim ) you will begin to go "aha! that is what I am experiencing with my child" and so the parts of the puzzle begin to be recognised and put together. Same with the treatments we discuss here....again a wide range of tests and treatments which have, either as a whole or as single remedies or therapies.....some or all may be relevant to your son and so as you start learning and doing your own research, so you will be able to go to whichever doctors armed with a lot of information and questions, to better help you formulate the best way of helping your son just know that we will all be here to offer support or info whenever you need it Jeez. I don't even know if this reply is going to all? I'm not sure how these posts and replys work. I want to thank you all for your wonderful replies. This whole thing is certainly a 'process' and it's going to take time. I'm so tired right now.....what a long day...... Let me quickly try to answer some of your wonderful questions b/4 I am way too tired to type anymore: Here we go. I asked my doc to do that strep test. He looked at Ty's throat and said that he was "fine." He also asked me if Ty had had a fever when he had a sore throat and I said, "No." He told me that it couldn't have beeb strep then. So he didn't order the blood work or do the strep test. That was Wed with the family doc and then Thurs with the loco neurologist. My husband thinks that he may have noticed a head shake (Ty's most prominent tic) a few months ago on the hockey rink. When I think back, I wonder if I saw some eye blinks a year ago???? I don't know. But this I do know: Tyler only started Sunday with the violent, repetitive head shakes. Monday-ish, Tuesday-ish he started with the extra two ticks. Today, he is doing two of the three, but not all together. Oh my. This gets confusing. I guess this is all part of that 'wax & wane' thing I'm reading about. They could have sprayed that soccer field, it was down the shore. But there is no way of finding out. And what does that mean? That his tics will end? Could a spraying of a field cause tics to start and stay forever? Or am I missing the point on that way? I don't know. My biggest dissappointment is the lack of informative doctors in my area. It's ridiculous. And I don't understand all of the limited studies for Tourettes. What's up with that??? Why does every other ailment, disorder, disease get funding and research and hoopla, but not this? I am stopping the B complex per the recommendation. I will look for magnesium tomorrow...and calcium too, right? 1:2 ratio? Calcium chews? Is all the magnesium alike? I read something about the one .....something 'calm'. I will go back and reread. I'm so tired. My days are so emotionally exhausting anymore. A total rollercoaster ride. And, jeeez....how I hate roller coasters! Oh! I gave Ty back the xbox. It made me so happy!!! He's laughing. He's forgetting he's ticking (but he has a sleep over buddy tonight so that makes it better too). I guess now I should make an appointment with an allergist? Is that my next step? Is there ever really an answer? There is no 'getting rid of tics', just trying to make them less severe, right? Ok. I'm rambling....so tired. Hopefully this reply went where it was supposed to. I'll find out as soon as I hit that 'add reply' button, haha. Thanks girls

Here is the short end of it: Last Sunday my 12year-old starting ticcing violently during his soccer game. I almost fell off of my chair. Wednesday he saw our family doctor. Ty did not tic in front of the doc. The doc thought I was crazy. Ok. Nix that. Thursday I was able to take advantage of a neurologistic cancellation and we got a 2:30 appt. That doc said that Ty is not suffering from a neurological disorder, and it was probably psycological. He said that he is 'nervous.' That was it. Tyler has a complex tic, he does three things one after the other. He is beside himself. He is soo upset, as I am. I want to die for him. It has been the worst week of my life. I am trying to hold back the tears as I write. I started him on a multivitamin and a b complex vitamin the day he started with tics (at the advice of my girlfriend). Here is the big question. Tyer ABSOLUTELY LOVES to play xbox. It is his favorite thing to do. I took that away from him (and, unfortunately, his 11-year-old brother) bc I noticed that his tics got worse with playing. Tyler keeps crying and begging me to let him play. He ticced very badly last night. Cried his eyes out. Begged me to let him play b/c he said that he doesn't think about the tics when he plays (peace of mind, right?). What should I do??????? We've been trying to supplement playing xbox with doing other things.....movies....took them to get models.......went to bookstore-got books and puzzles. I don't know what to do!!!! I don't know what to do about his ticcing, or xbox, or anything at all!!! I am so upset. My family was living life last week. Everything was great. We were happy-go-lucky. This week the floor fell out from under us. I'm not getting any help from doctors. I did order Sheila Rogers book which I received yesterday. Oh! The best part is that our insurance doesn't cover doctor's visits. So every penny is out of pocket. I can't afford to keep taking him to doctor after doctor after doctor. It was already $300 just for Wednesday and Thursday. Oh my. This is a complete mess. Please give me your thoughts.