trinnie

Cheri: I have tried eliminating some artificial colors and preservatives as well as wheat and a few others from his diet to no avail. We are currently having the PANDAS testing done (per a prior post with you - where you indicated given his large time frames of waxing and waning that maybe it's PANDAS) but we have not received all those results yet. We did get a call tonight though that his throat culture was betahemolytic strep positive - but not group A. Very odd, he's not even been sick! Anyway, I guess I struggle with where to begin with nutritional methods and dietary supplements. Can you help me with that? I did read much of your post regarding treatments that you've used on your child, but it sounds like you had a lot of testing done first. We are having trouble with our pediatrician being willing to do a lot of testing. Did you get a lot of testing done or how did you know where to start. I certainly would appreciate recommendations and would love to venture down this road further before heading in directions which will cost us a lot of money (and may not even help him). I so appreciate your help!

Anyone have experience with Applied Kinesiology or Brain Balance Centers? We have been struggling to find any help for our son and it seems like we are going to have to go the route of alternative medicine or other treatments that are not covered by our insurance. Our son was diagnosed with Tourette's earlier this year after 2 years of progressively compounding tics. We are not getting a very good response from our current pediatrician. Struggling with communicating a more natural route to him for treatment and an array of testing (which he is not receptive to doing). We did just have the tests for PANDAS done and are awaiting those results but don't feel that he has that as his tics developed before he ever had strep. We are financially just barely floating right now so this is a hard route for us to consider, but we want to do what is best for our son. If anyone has experience with either of these and can comment on whether or not it was effective and how much it cost and in general what their overall experience was I would be very appreciative! Thank you! Mom at her wit's end

No we have not looked into that. I had thought about it but I don't believe my son's ever had a strep infection. Is that the only way to get PANDAS? Also, how would one go about getting that tested? Thanks again!

Cheri: They don't often wax and wane to that extent but in the few years that we have suspected this I would say this has happened 3 times, where all tics seem to be gone for a period of a few weeks to a month or recently about 5 or 6 weeks and then they come back full force (for no apparent reason) and bring along another new tic. As far as behavioral/mood change he does have those as well. He misbehaves or is mean to his brothers at times as well as gives his dad and I the "cold shoulder" and won't respond accordingly to signs of affection. My husband wonders if there is a daddy/son link here somewhere that when he has good bonding time and closeness with daddy that his tics are better. This is a hard one to measure as he has good time with daddy some days and then immediately the next day not as much. Daddy has other children to spread his time to too, so this is difficult for my husband. Any thoughts? Are you thinking he may be misdiagnosed? I appreciate the comments for those who have offered them and we hold out hope that we will find what we need to to help him. Thank you!

I've posted once before, but didn't get much of a response. I'm trying again. My 8-year-old son was diagnosed with Tourette's in March, although I've been suspecting for some time. He has bouts for months and then it seems to subside and go away almost entirely for a little while - weeks or even a month or so and then it comes back full force and usually with an additional new tic. He recently started up again and now has all his regular tics (throat clearing, sniffing, breathing deeply through his nose, picking at his fingers, coughing) and has now started to occasionally shout out things (not cuss words or nonsense). We've tried to find things in his diet to no avail, because as soon as we think we've hit upon something we discover that's not it either. Then the tics subside and so we can't test anything else. I'm at a loss for what to do now. I'd like to try and find someone who our insurance will take who will direct us in natural ways to help him - via diet, supplements etc (no MEDS) but have struggled with finding anyone in our area that treats this naturally and that our insurance will take. We are relatively new to the area, financially strapped because we still have our old home on the market (1 year later) and so cannnot afford to find someone and pay for it out-of-pocket. I am willing to travel some distance but probably not much more than a couple hours. I also have heard that chiropractic docs can help too, but not sure what they would do and don't want to be in a place with treatment that would require us to be under constant therapy or visits. I'd prefer to find what it is that helps him and go from there on our own. Someone please help! I really am at my wit's end. We homeschool and our year is starting back up in just a couple weeks and it's going to be difficult going into this again with no ideas of what we can do to help him. There just seems to be so many possibilities and even combinations that it's hard to know how to come upon what it will be without some assistance. If anyone out there can offer help or recommendations I would so appreciate it. Oh, and by the way we have the Natural Treatments book and have tried many of the things in there diet-wise that are recommended but to no avail. Thank you in advance!

We are relatively new to this group. Our 8-year-old son has Tourettes and we are also relatively new to East TN. Wondering if there are others of you out there who have taken your children to a physician who has helped you without meds (preferably through diet or environment etc.) We're hoping to find someone who is covered by our insurance but know the odds on that are not good. We are very financially strapped right now (paying two mortgages and two kids in college) so it would be great if we could get some help that would be at a lower cost for us (i.e. with the help of insurance). I've been reading the natural treatment book and have tried eliminating a few different things from his diet to no avail as of yet. I do realize this may be a very long, tough road, but was wondering if anyone out there has found a wonderful physician or someone who was very helpful to them in the East TN area. Thank you so very much!

Hi All! I am new to the board, although I have lingered over the last couple of months. I took my 8-year-old son to the pediatrician today for his regular check-up and mentioned the concerns that we have been having that have increased in frequency and type over the past year of the tics that he displays. His past pediatrician back in WI said that he had a motor tic (this was almost 2 years ago) and at that time it was throat clearing. She indicated that this tic may go away and another one would probably replace it. Which that happened - next was the constant cough which went on constantly for about 4 or 5 months. He also started stiffening his body. Then in the past 6 months he's had a combination of all of these plus nose sniffing (loudly). It has gotten very disturbing (to me as his mom). I'm with him all day as we homeschool and I find it very hard to not ask him to stop or not want to punish him for this. When we went to the doctor today, he indicated that he felt that my son has Tourette's. He also said that he thought we should try some behavioral therapy. I don't know where to start and am basically looking for advice. We will NOT put him on medication! We live in Knoxville, TN and are hoping to find someone around here who we could take him to for treatment or other noninvasive ways to help him. If anyone is in East TN and can recommend someone or give me good direction, even if you aren't in East TN that would be much appreciated. What have you found that works for you? I realize everyone is different but just looking for the best place to start. Thank you very much!