tlkinser

Hi Michele, I wanted to let you know that I've been following your updates on Andrew and am thankful that you are taking the time to post so much info that the rest of may benefit from. I haven't posted in a while, but I've been keeping up with everyone and am more confused than ever, but also more grateful than ever for the wealth of knowledge here. We are getting the results for my son's biomedical testing next Tues. It feels like I've been waiting for this day forever... it took so long to get all of the tests done (blood, stool, urine, saliva, hair). I am so nervous that the results will not show anything in particular to be a problem, OR that it will show everything to be an issue and we will have to go back to struggling with a very restrictive diet and environment. Either way, I am very anxious and can't wait to reach this next point in our journey. I found the talk above about the mother's autoimmune illnesses playing a part in the PANDAS dx. I have a blood clotting disorder that required me to take blood thinners and 81 mg of baby aspirin daily during all of my pregnancies. While I don't have lupus, I do test positive for anticoagulant antibodies and lupus anticoagulant and was told this is an autoimmune disorder. Then again, my dh has recently remembered having tics as a child (minor such as eye blinking or a head shake once in a while, sometimes a quiet hum under his breath; nothing like the loud and constant vocals my ds has presented with since last spring during his strep). So, I guess in some way, we may have both contributed to our children's illness and tics. (My 6 yr old dd also struggles with tics and tested + for strep when they exploded with her last spring. Her tics are not as obvious and are less severe than my ds, but I am terrified that they will get worse in the coming years.) My children didn't stand a chance, did they? LOL. This is all so interesting (and frustrating, heartbreaking, unfair, scary, etc.) I still don't know if my children have PANDAS or TS or transient tic disorder or WHAT?! On a separate note, my ds has 2 staples in his head because he banged it into the corner of the wall while crawling around and rubbing his forhead on the carpet last week. He really likes to feel pressure on his head and my dh and I know in our hearts that this "accident" was due to his tics/PANDAS. His lack of fear for anything dangerous and his clumsiness (sp) scares me to death! I have rambled, but just wanted to let you know that I am keeping up with you and Andrew via your posts and keeping you in my thoughts. I will let you know what we find out next week about my 5 yr old son. Bless our little guys! Best wishes to you all. tlk

Trubiano, my 5 yr old son shows some confusion similar to what you described. I have to repeat simple directions over and over again and sometimes he looks at me like he has no idea what I'm talking about. For ex, I will tell him over and over again to get his shoes on for school and I will look back at him in the car as I'm backing down the driveway and realize that he has no shoes on. Sometimes he will repeat a different question back to me that makes no sense (I will say, "Let's get ready to go" and he'll say something like, "Let's get red or show?? What does that mean??") His 3 yr old sister very often helps him by getting his shoes for him or getting his lunchbox, etc. His hearing is fine and ADD/ADHD hasn't really come up yet. It's as if he's just confused sometimes. I understand why you are concerned. I get a jolt of panic when he shows this kind of confusion. I remember being very concerned last spring when he first exploded with the symptoms and he looked right at me and kept calling me "Daddy". It was as if he were looking through me rather than at me. I took him for a CT scan that night at the ER b/c he also had taken a big blow to the head the week prior. The CT scan showed nothing and it was then that we began our journey into this TS/PANDAS dx. I have no advice, but hope that there is an answer to all of this in the form of diet and suppplementation. We are awaiting some test results for our son and will soon have some direction regarding all of this (hopefully!). You are in my thoughts. Let me know if there's anything I can do to help. You are in GA, right?? I will let you know about our test results with Spherios as soon as they come in. tlk

Thank you for sharing your story. So much of it mirrors my own with my 5 yr old son. He started with vocal and motor tics last April and has ticced nonstop for most of the summer. We've cleaned up his diet and done Feingold (strictly for about 3 weeks and now just try to keep things whole and organic). I've kept a journal but was never able to see any patterns. We are currently waiting for some test results that we did last week to give us some new direction with supplements and dietary changes. He was doing really well for the past 2-3 weeks and all of a sudden, his vocals started up again yesterday. Thank you for your post and best wishes to you and Q for continued health. I really needed to read this today as I'm feeling really discouraged right now and wondering if there really is a way to control these tics. tlk

Thanks Claire and Carolyn for your input. This dr does take our insurance but we have a $6000 deductible with this out-of-network dr, so this would be out of pocket anyway. I got a good feeling about the dr and felt positive when I left there, but would rather save some money if possible. I wonder if my son's pediatrician would order any of these tests for us so our insurance will cover it?? He is pretty supportive of us, but I'm not sure how he would feel about all this. When I went for a quick visit last month and met with his Physician Assistant, I mentioned our upcoming appt with the environmental dr. She was very disapproving, told me to "be careful" because they can do some pretty extreme and dangerous procedures that don't work (chelation), and told me I should go back to the neurologist. I guess she is representative of most of the pediatricians there. Anyway, I will keep reading and researching until Wed when we are scheduled for the blood work. I feel much better about having a dr guide me through this, but I just wish I could find one that my insurance will cover. Thanks again, tlk

Hi everyone, I am taking my son in for some testing this week and am starting to question whether or not I am going about this the right way. If I go with the environmental physician, it will cost us nearly $2500 for the tests I want. I think if I go on my own, it will be much less expensive. My question is, how will I interpret the results if I do this without the environmental dr? My father is retired but was in the clinical lab industry and has implied that $2500 is a lot of money for what I am having done. He wanted me to look deeper into the dr to make sure everything was/is legit. (To be fair, my father is a little leary about the entire holistic approach, however he wants the best for his grandson and is willing to support us no matter what we choose to do for ds.) I was under the impression that I was dealing with a board certified medical dr and now that I've looked him up, I see that he is a Naturopathic Doctor (N.D.) and a Masters of Science of Oriental Medicine (M.S.O.M). I'm sure he is great, has our best interest at heart, and will lead us in the right direction, but now my father has my wheels spinning. Should I try to get some of this testing done on my own or should I just stick with this guy that seems genuine and let him interpret the results for me?? For those of you who ordered the testing kits on your own, what did you do with the results once you received them?? We are wanting to test for everything: yeast, vitamins, amino acids, delayed foods, metals, etc. Urine, blood, saliva, hair and stool... I can't imagine trying to figure this all out without someone who knows what he/she is doing. Is it possible?? Will I save much money?? Thanks again for all of your help and input. It means more than you know. tlk

Thanks everyone for yout input. Carolyn, that's really interesting about the Pyroluria. I will have him tested for that if it's not already on the list of testing to be done by our environmental dr this week. It's exactly what you described- it's like he can't stop "thinking" about things enough to calm down. His motor is still full-speed ahead. I am so grateful for everyone's input on this site. I often sit for hours and go back and read through as many posts as I can, just trying to pick up one more piece of the puzzle that might help my son. It is so wonderful that everyone is willing to share their journey so that others can learn from it. Thank you! tlk

Hi all, My son is still ticcing (vocal and motor) most of the day, all day. The loud vocal yell/grunt has calmed (thankfully), but he still squeaks, shakes his head, clears his throat (small grunt), and licks things. He goes to Kindergarten, plays with his buddy next door, and is on the go full-speed all day long. I know he is exhausted by bedtime but he is having a really hard time falling asleep, staying still, relaxing... you get the idea. We are doing epsom salt baths before bed, but the past few days he has been so restless at bedtime. We've removed the fish oil, Kids Calm, and multi-vitamin for the past two days, as well as removed dietary restrictions since we are getting ready to do some of the environmental testing next week. (The dr suggested stopping supplements so that we can get a precise result with the testing.) Does anyone else notice that their child has a hard time getting to sleep at night? He can be in his bed for 2-3 hours before FINALLY falling asleep. He flops around, kicks his legs, plays with toys, rolls from side to side... just CAN'T be still or get comfortable. We start bedtime at 7:30 and the past few nights he has not been asleep before 9:30-10:00. Any ideas to help calm him? Is this indicative of something (a lack of something, too much of something??)? I guess I'll be able to see if the supplements help with this when we start them back up next week. Thanks in advance, tlk

A family friend sent me a link to that article as well. I don't like the underlying message that our children are able to control their tics. However, since I am willing to try absolutely anything before (or IF ever) medication, I have to keep an open mind about it. I just hope that people (teachers, coaches, other authority figures) don't misinterpret this article and think that our children are ticcing because they are lacking in self-control. I know my son (and daughter too) absolutely can't help themselves when they tic. At times, they can control the frequency or intensity of the tics given the social setting they are in, but some how, some way, they need to let their tics out. tlk

Michele, I tried Omega Kid DHA, Omega-3 fish oil before I tried the Coromega. It is a lemon-flavored liquid- my son really didn't like taking it and I didn't see any change in his behavior. He hasn't really complained much about the Coromega. It is a lemon-lime flavored gel (kind of like a paste or pudding) that we squeeze out onto a spoon. He takes it and then gulps a scoop of ice cream or a drink to wash it down. We call it "Shrek Pudding" b/c it is neon green. It comes in other flavors as well. Dr. Jane Mutch (from Shands- she works with Dr. Murphy) told me about it. She said that it's the first thing that Dr. Murphy tells her patients to try. It may be a coincidence, but this is the first break we've had from non-stop tics in over 2 months. He is still ticcing, but it is down by about 50%. His teachers told me that he didn't make the throaty noises at all today which is what he's been doing in school to let his tics out. They did notice the loud tics that I had warned them about, but he only did them 4-5 times, not back to back all day like he has been doing at home. As far as our testing goes, I was told at yesterday's visit that the tests we are going to run total about $2100. They will then interpret the results and put us on a supplement program. I am going to double check to be sure, but if I remember correctly, they told me that the $2100 is the only cost, other than the cost of my supplements. I would hate to have to pay $$ every time I call with a question! The dr I spoke with sounded very sincere when he told me that I could email him or call the office with any problems or questions. I will check into that, but I'm going to be very discouraged if they charge me every time I have a question. I am anxious to hear how your results turn out. Please keep us posted. I hope things are going well with you all. tlk

Thanks Carole! I have only made it through 1/3 of Dr. Swedo's lecture but can't wait to watch the rest. Thank you for sharing this! tlk

Hi all, I just wanted to give you an update on my son that's somewhat more positive than the downers I've been posting lately. As you know, he's 5 yrs old and exploded with vocal and motor tics last spring. They subsided for about a month (last May; looking back, it was probably due to the amox.), and then came back in June and haven't quit. They have been really bad since Aug- never really letting up. His vocals have been loud and constant. His strep titres have been normal since early July so I'm not able to get anymore antibiotics right now. Anyway, I went ahead and sent him to his first day of Kindergarten on Tues (cried all the way back to my car as I was so worried about him). I talked to his teachers ahead of time and let them know what was going on. They are so wonderful and just such a blessing for him. Since he just turned 5 this summer, I had planned all along to enroll him in the K-program at the Methodist Church preschool he attended; it's smaller and a better fit for him since he's not quite ready for the bus and the "big" school. I am SO glad we did this now that we are having these issues with the tics as I think I would be homeschooling him if he was enrolled in the big public school. He is doing great so far, and his teachers tell me that although he makes noises all day, they are not the loud ones that I described to them. He must be holding them in as best he can. The first day I picked him up, he was ticcing like CRAZY during the ride home. I am just so relieved that he is happy and doing well in K so far. I started him on Coromega on Tues night and we noticed that he seemed a *little* better on Wed. I'd say his tics were down about 10%. The biggest difference was in the morning when he woke up: typically, he starts ticcing before his feet hit the floor from his bed. I know when he's waking up because I can hear him start grunting/yelling. Wed. morning, he was awake and interacting with his sister for a good 5 minutes before I heard his first vocal. I kept holding my breath thinking that maybe the tics had just all disappeared and he was his "old" self again, but no such luck. LOL. Today, however, was even BETTER! His teachers even told me that they looked at eachother during morning work and whispered, "It's quiet!" I also had some peace and quiet in the car. YAY! And the best change of all has been in his temperment. Prior to today, he has been so angry, contrary, short-tempered, disagreeable, etc. Today, he was so pleasant, funny, happy, cooperative... lots of "Yes, M'am"! It was such a great day with my boy. I don't know if the Coromega was a coincidence or not, but we are going to continue and PRAY that things don't ever get as bad as they have been this past month. One last update (sorry this is so long): we had our long-awaited appt with the Environmental Dr. today. I finally feel like I've found a dr that will listen to my concerns, observations, beliefs, etc about what is going on with my son. The dr was very caring and let me know that we were in the right place. He didn't make any promises, but he did tell me that he has seen patients who have had moderate to complete success with tic issues such as this. He wants to do testing (as do I)- a hair test for metals, an expanded stool test for yeast (other things tested here, but I can't remember all of it), and a urine and blood test (ION test) to test for fatty acids, vitamins and mineral levels, IgG food, and amino acids. I am so looking forward to having some answers- I just pray that these tests provide some kind of direction for us that makes a difference for ds. I still think there is some of the PANDAS stuff lingering around, but I also believe that he has some food issues or something else that is out of "balance" inside. Thank you for reading all of this and again, sorry it's so long. I am just so thrilled that we had such a nice day with ds today and that the appt went well. Hope you all are doing well. Blessings to all of you. tlk

Yes I give four Primodophilus tablets a day. Plus digestive enzymes. Again I talked to Dr. Congeni today infectious disease Dr. He wants proof by way of documentation of research articles that Azithromyacin is better then pennicillin. He says Azith has a 5% resistance rate to strep in our area of Ohio. Penn he says is the better treatment for strep. I tried to explain the PANDAS and the immune help azith provides but he didn't get it. He said if Andrew doesn't have strep now then azith would not help him anyways. I will send him the NIMH article on Pennicillin and Azith but I read the article to state it works as well as Penn but did not state better which is what he would want to see. I begged for a five pill trial but no go yet. Also, I talked to the DAN Dr. the other night on the phone about a few questions and I got a $ 90 bill. How do you get this stuff covered by Blue Cross insurance. I guess Autism treatment is excluded by our insurance. Plus I had all that blood work run. I have to go back to hear all the results and his course of action. I already paid $500 out of pocket on the first visit. I am getting nervous. My husband is not going to like this! Help. Michele Oh, Michele. I feel for you. I am wanting to try my son on Azith as well (had dreams about it all night long last night), but am afraid to ask my pediatrician since we've been in and out of the office over the past few weeks for strept titres and other questions that he just can't answer. My son's strep titres are normal now so I'm sure he won't give the prescription. I am sure he thinks I am just nuts at this point (and I am!). Watching my son tic all day long, every day will do that to a person. My son's tics look painful- constant grunting and squeaking, head shaking, body jerks, licking, etc... Six months ago this was something I'd never seen in my child. It is crazy... I keep saying that over and over. It's the craziest thing how this could all happen so fast. I have an appt with a different dr on Thursday. I'm going to beg for the azith just to try it, like you said. If she says no, I'm going to beg my pediatrician and then I'm going to go on and beg someone else. It might not work for us, but WHAT IF IT DOES? Hang in there. You are doing a great job fighting for your son. tlk

Hi, We have not tried the Bontech Supps. We have eliminated all artifical colors, done Feingold (strictly for 3 weeks and now not as strict with it, but adhere to the basics), eliminated dairy for 2 weeks, eliminated eggs, eat nearly 100% organic, added a multi-vitamin, add Kids Calm, use Epsom salt in the bath... I have not seen anything make it better or make it worse. I have kept a detailed journal for the past 3 weeks with everything that he eats and his behaviors throughout the day. We have not found anything that stands out as a trigger. Food in general makes him tic. Just sitting down to eat causes him to start shaking his head and making kissing noises, grunting, squeaking, etc. He can hardly control himself- food is everywhere, he's messy, he spills- almost worse than when he was a toddler. (He's 5 now). I know that we are early in our journey compared to others here and there's so much more to do, but it is so discouraging to work so hard on controlling his diet (he is very unhappy about the restrictions), and still have days like today where he is ticcing vocally non-stop. He has been dx with PANDAS, but now that his titres are normal, the neurologist changed the dx to TS. They have offered us medication. We did the scratch test with an allergist and it showed a reaction to dust mites, mold and a slight reaction to eggs so we have pulled those (eggs) from his diet. We are meeting with an environmental dr on Thurs- hopefully she will be the one to guide us in the right direction. Thank you for your post. I will go to the website and look into the supplements. I am just hesitant to add anything else to his system that he may not need. I have heard good things about them so maybe they will help my son as well. Thanks again, tlk

1. He's 5 years old. 2. Yes, he wets the bed, but we usually take him before we go to sleep around 12:00. He was doing well with staying dry until last spring. 3. Tics started last spring. tlk

I am also in need of some success stories. We are having a terrible time right now and I'm wondering if it's ever going to get better. I was going to post a similar message today. Best wishes to you, tlk

Hi Pandamomnm, I am so sorry- your story sounds horrific. Our 5 year old son exploded with tics (vocal and motor) last spring and after several doctor visits and tests, he was dx with Pandas. His titres are now normal and he continues to tic constantly, so the neurologist has dx him with Tourette's instead. Our options at this point are to medicate, something we are opposed to since he's only 5 and we have hope that we can strengthen his immune system and get him well naturally. His vocal tics are nearly every second right now, so I am feeling desperate. We have not experienced the OCD, although he is now licking things and does seem to get stuck on something occasionally. I wish I knew what to tell you or which direction to point you, but I am looking for some of the same answers. I know you have to be exhausted. I agree with what the others have told you about finding a new doctor. I would also try to get in with Swedo or Dr. Murphy at Shands in Gainesville, FL. God bless you and your little boy. I will keep you in my prayers. tlk

Hi all, I am feeling like the worst parent ever because I can hardly stand to be in the same room (house, really) with my son. He has a LOUD grunt/yell/bark type noise that he makes every 5-10 seconds, sometimes more (like back to back, every single second). If he's not making that noise, he's squeaking (this happens every second, kind of coincides with his breathing) and he shakes his head or bangs things on his head. It is constant. He licks things, he acts more immature now than he did when he was three, he has a terrible temper, he cries over nothing, he is so hard to be around. This has been going on for the past 3 months, with a day or two here or there being slightly better but NEVER tic-free. There was a decrease in frequency a few days last week when we gave him some Benadryl, but that's not working anymore. He starts school tomorrow and I don't even know if I can send him. I am just so sad and so frustrated. I just want the noises to stop- I don't even care if he blinks or shakes his head. I want SO much to believe that I can help him without medication, but I am about at the end of my rope with listening to yelling tic. I miss my little boy that had control over himself. Ever since spring, it's like we're living with a different child- the tics, the behavior, the temper... it's crazy. My husband and I are sick with worry. How do you get through the very bad days without losing your mind? And how do you hold onto the hope that there is an answer for your child without resorting to medication. I don't know how much more we can take. Thank you and God bless all of you who are willing to help our children, tlk

Thank you everyone for your comments. I remember reading that Benadryl actually increased tics in some people; that's why I found it strange that my ds responded so positively to it. I guess whatever works, right? ad_ccl, thank you for the info that you've given me regarding your son. It is so encouraging. I went to the Open House tonight for my son's Kindergarten class and had a pit in my stomach the entire time. It is so sad because this should be such an exciting time for us and, instead, I am filled with a feeling of dread and anxiety. He meets his teachers tomorrow and starts school next week. If we can get a handle on these vocal tics and odd behaviors, I will feel SOOO much better. Hearing stories like yours gives me hope. Thank you! And best wishes to your son. It sounds like you have already been through the worst of it. tlk

Thank you! That actually makes a lot of sense to me. Interesting... If I remember correctly from reading some of your old posts, your son always tests + for strep, correct? Since my son is negative now, I'm not able to get him on antibiotics. I'm going to have to do some more research and print some info to take to my dr. A trial run of azithromycin couldn't hurt, could it?? Thanks for your reply. tlk

My 5 yr old son's vocal tics have been non-stop for the past two weeks. He's be ticcing off and on all summer (both vocal and motor) since the original explosion last spring, but the past 2-3 weeks have been the worst. Finally, my husband decided out of desperation to give him a does of dye-free Benadryl last week and the tics subsided. My son's eyes were really red which is the main reason my husband gave him the Benadryl. We did the same thing on Sun, and again today and had the same results both times. I am trying not to give him Bendaryl every day since I'm not sure exactly what's causing the tics in the first place, but it seems to be more than a coincidence that the anti-histamine would be helping. Has anyone had similar results?? Some background: we took ds to an allergist two weeks ago and via a scratch test, he only tested positive for dust mites, mold and eggs (sensitivity). He was tested for grasses and the types of trees we have around here but it showed nothing. We have eliminated eggs and dairy from his diet and stick pretty close to Feingold. We are scheduled to see an Environmental Dr next week so maybe she'll be able to do more in depth allergy testing for us. He has been dx with everything from tic disorder, Sydenham's Chorea, PANDAS and TS. TS does not run in either of our families, but my husband is now realizing that he had some minor tics (habits?) as a child that never really went noticed by anyone else. (Maybe TS dx today, but probably more of a transient tic disorder. His mother had him on the Feingold Diet for hyperactivity.) I have never noticed any tics in my husband and we've been together for 10+years- this is the first time I've ever even heard of it. This whole process is so confusing and can be very discouraging. I am trying to stay positive and believe that we will find an answer, but it is so hard! I just want to help my son get well enough to stop ticcing all day long. Thank you for your help, tlk

Hi, I am pretty new here as well but know your fears all too well. My 5 year old has been ticcing off and on since last spring; his tics are very obvious vocal and motor tics that haven't let up in the past 2 weeks. It is heartbreaking. I also have a 6.5 year old daughter who does some of the eye widening and blinking stuff along with some throaty noises and/or humming under her breath. Since my son is so bad right now, I really don't even notice the things my daughter does, but I do worry about her being made fun one day soon in school. Since we are at the beginning of our journey, I don't have much advice, but I do want to let you know that you are in the right place. I don't think there is any more information out there than what you'll be able to read on these forums from people who have already been through everything we are going through. The amount of information regarding diet, supplements, allergies, etc can be overwhelming at first but just take your time and sift through as best you can. I have found that my traditional pediatrican in not much help as he and the other drs that we've seen there want to keep sending us to neurologists. I have been to two so far and they have not really offered much more other than medications. We have chosen not to go that route and are anxiously awaiting an appt with an Environmental Dr in our city. We have also been in touch with Dr. Murphy at the Shands Clinic in Gainesville, FL since my children both tested + for strep last spring when this whole thing started. I know I have rambled on about my own story- sorry. I just want to let you know that you are not alone in your fears. Your dd may have something as simple as a transient tic that will go away on it's own. You may want to make some dietary changes if you feel like there's room for improvement. Also, read about the various supplements that others here have tried. The book offered here about tics and Tourette's by Sheila Rogers is excellent (not suggesting that your dd has TS, but it is still full of great info). I also think that Doris Rapp's book, "Is This Your Child?" is great. I found a copy on ebay. You will find a wealth of info here. The best advice I can give you is to just start reading through old posts. It will give you so much hope as well as many options to try with your dd other than medication (if you so chose). Best wishes to you all. tlk

Thank you Chemar and Michele. I appreciate the input, especially the details regarding scheduling with Dr. Murphy. To answer a few of the questions, yes, I do have a dx in writing from my pediatrician for PANDAS last spring. I don't know if he received a report from my second neurologist negating the dx, so I'm not sure where he stands on the PANDAS issue right now. We haven't seen him since the spring. I am taking my son in tomorrow for another blood test just for some peace of mind as his behavior and tics have been more severe than ever these past few days. We have a well visit scheduled next week so I'll be able to discuss all of this with the dr then. I will bring all of the Shands info with me and beg him for a referral. I can't thank you enough for all of the information so that I can go into my pediatrican prepared. I will also look into the clinic at Johns Hopkins. ANYTHING to help my son stop ticcing every second of the day. Thank you!!! tlk

Hi everyone, As you may have read already, my 5 yr old son was diagnosed with PANDAS by his pediatrician last spring after a sudden explosion of tics. His throat culture came back negative (rapid strep test), but his ASO titres were over 600. The first neurologist we saw actually dx him with Sydenham's Chorea, but my pediatrician thought it was more like PANDAS. A second neuro said it was not PANDAS as it's common for kids to have strep at any given time and in order to be dx with PANDAS, my son needed to have another sudden explosion of tics AND test + for strep. So, my question is, is this second neurologist correct? My son has exploded with tics again this summer (worse than last spring), but his ASO titres have been normal. I think I've read that strep can live in other parts of the body. Is this correct? I am asking all of this because I would love to get him in with Dr. Murphy at Shands but am afraid I will be declined because he is not testing + for strep anymore. Part of me feels like the second neuro was right, but the other part of me KNOWS that there is some kind of conflict/battle going on inside my little boy's body. Is it possible that there is still strep somewhere in his body that doesn't show up in a blood test? Thank you for your help. tlk

Hi Faith, No, my son has not had any recent vaccinations. I thought about that last spring when he exploded with the tics. He had a series of shots last summer when he turned 4, and I think he had the flu vaccine this winter, but nothing immediately prior to the ticcing. As for the food sensitivites, we took him to an allergist last week which really didn't help. Before the testing, she was "sure" that something was up because she immediately noticed the red rims around his eyes and the dark coloring under them; however, he only reacted to the mold, dust mites, and a slight reaction to eggs. I have read somewhere that sometimes those skin prick tests don't pick up food allergies that affect the brain. (??) I am scheduled to see an Environmental Dr after Labor Day. I'm not sure if she's a DAN dr, but I think she will be open to the tests that you talked about as well as the many others I've read about here. I saw a video clip of her online discussing her son's ADD diagnosis and how she transitioned from traditional medicine to environmental after trying to heal the cause of the ADD rather than the symptoms. I'm hoping that she's willing to do the testing that I am going to ask for. My son is ticcing every second right now, like he has the hiccups. It's crazy- I just can't understand how his body could change so much in such a short period of time. I can't imagine him living with this for the rest of his life... bad days=ticcing constantaly, and good days=waiting for it to show up again and wondering how bad it's going to get. Thank you for your input. I am taking notes on everything I read so that I will be prepared in 2 weeks. I just appreciate this site and all of this information so much. If I hadn't have found it, I'm sure my son would be on medication right now. :-( tlk

Hi, My son is five too. I have been dealing wih his mild tics ,OCD, and ADHD during strep episodes since he was fifteen months old. Hopefully your son's tics will come and go as my sons have. I don't know if you've seen any correlation to illness, shots etc. but try and document as much as possible on the course of his tics, Dr.s you see, meds etc. It will help you in the long run when you see any new Dr. I have read all the books you've mentioned too. I am also in the process of trying the GFCF diet with my son. It is not easy to do because they get upset at not getting foods they like and are used to. It will be worth it if we can find them some relief from their problems. Does your son have any behavior troubles or OCD with the tic episodes? We are going the Biomedical route now too. Even though they are young, five I think trying the medicines now is better then the long term damage that may come from the basal ganglia part of the brain being destroyed by the strep autoimmune reaction. Keep reading and praying for a cure to this terrible disease. I am giving my son several supplements and antibiotics right now. Have you watched the HBO documentary on Tourettes? I just finished it and feel so much compasion for the kids who have this. Try to find a Dr. that knows about treating PANDAS. Try Dr. Murphy at the Shands clinic in Florida. I am on a waiting list right now. There has to be a way to get our boys help. Keep up the good fight. God bless. Thanks for sharing your story. Michele Hi Michele, thank you for your reply. I'm sorry to hear that your 5 year old son is also struggling with this. We have not seen any signs of OCD yet (won't be surprised if it shows up though), but I definitely see behavioral issues. Sometimes, it's as if he has no control over his actions. I have been giving him Kids Calm as well as a multi-vitamin. I haven't added any other supplements because it's all so overwhelming. I don't want to add anything else to his system that may make things worse. I'm just waiting for our appt in 2 weeks and am crossing my fingers that she'll be able to run all of these tests to see where he may be overloaded and/or deficient. I am interested in the Shands Clinic. Did you have to have a referral to get in there or can anyone just call for an appt? My son was dx PANDAS by our pediatrician but then dx TS by the neurologist. He doesn't test positive for strep anymore but still tics more than ever. I wonder if they'd see us there? I agree that there has to be an answer. I don't think that medication is the answer for us; something is going on inside my little boy's body. 5 months ago he was able to sit still and eat a meal and now it's like watching a baby eat. Food everywhere, uncontrollable tics, etc. It's the craziest thing! Thank you for your reply and best wishes to you and your little guy. tlk