4Jack

Hi Nicklemama, May I ask what treatment you are doing for mythelation/sulfation? Are you doing anything to measure the results? My DS 10 has 2 copies of c677t and therefore is has very inefficient mythelation. He takes b12 and methylfolate as well as other supplements. It is such an critical bodily function and I wish I had more evidence it was working. Any thoughts? Thanks.

Hi Chris, Here is a good link for info on dhppa and the neuro symptoms it can cause. http://www.greatplainslaboratory.com/home/eng/hphpa.asp Its written by the lab that does the test, so i'm always weary the info might be biased but I did a lot of research on this and its all consistent with what I've read. Dhppa (which is a metabolite of Clostridia)can cause or worsen so many of the symptoms my DS9 has (TS, OCD, digestive issues,some ASD behaviors though not dx on the spectrum). For those reasons, I can't wait to knock it out! We just started the supplements yesterday but I will post on the progress. As for the C677t, the DAN! trained RN we are seeing typically tests for it because it is common in kids with neurological disorders. Interestingly, his methylation showed up as fine on the Organic Acid test but he was positive for the mutation which says that he does have a defect in the methylation cycle. Not sure why it wouldn't show up on the acid test but the mutation was tested by labcorp and is 99% accurate. The acid test did show that he had high oxidative stress (due to not enough glutathione which can be caused by methylation defect and proessing b6, b12 and folic acid the best way). This one is really concerning since oxidative stress is a precursor to many illnesses. He's taking the CD biotic and CD herbal to knock out the Clostridia and B12 nasal spray to address the mythelation. We have previously been doing GF/CF diet, Super Nu Thera multi, inositol, calcium, C, zinc, CoQ10, and krill oil. He can swallow pill which helps. Hope this helps! Lisa

Hi Chris, How is your son doing? My ds was just got testing back with very high DHPPA. We are starting him on CD herbal and Cd biotic by Kirkman to fight the clostridia. The.natural methods are supposed to have less die off than antibiotic. Did you have testing for mutation C677t. If positive it can effect methylation. My ds was positive for that too. We are starting B12 therapy. Good luck, Lisa

Hi lfran, My ds was treated for Lyme but it did not help directly with the tics/OCD. I was told it could take months the Lyme was gone to resolve. What has helped the most is getting his OCD under control. We now realize how much it drove his tics. Tics are still there but dramatically reduced. He sees a Cognitive behavioral psychologist for CBT therapy for the OCD and Habit reversal Training for the TS. (HRT is a method of CBT). The HRT has helped for the tics but the book I mentioned has helped the most for the OCD. It is based on CBT techniques. We are on the east coast, but I would definitely make sure you find a psychologist that specifically wprks with kids with OCD and TS. Some on this site are wary of HRT because they feel it is not good to have someone try to supress tics, but our experience has been that it is more about redirecting them than supressing. SF Mom, My ds9 Lyme is may be different than most on this site as he has had TS since he was 5 and it is hereditary. He got Lyme just recently and we caught it early. He tested negative for confections so we are hoping that it is resolved. There are no indications that the tics and OCD symptoms are Lyme induced. Hope that helps! Lisa

Hi lfran, Your story struck a cord as it is very similar to my experience. My ds9 was diagnosed a year ago with TS and OCD symptoms. He has had tics since he was 5. I didn't buy the OCD thing because the neurologist only spent about 10 minutes with us even though it took me 2 hours to fill out the forms and because at the time my son's tics involved counting so I thought he jumped to the conclusion that it was a compulsion. I repeatedly asked his psychologist (who was teaching him HRT for the tics) if he saw any signs of anxiety or OCD as he has always seemed to be low anxiety and an easy-going kid. His psychologist agreed that he saw no evidence of either. About 10 months after his dx, he contracted lyme disease (classic case with bullseye so caught relatively early). His tics went through the roof and started to seem more ritualistic. The tics have always been complex but they seemed more "purposeful" such as evening up the tic, i.e. if he flicked one ear he had to flick the other. He continually denied having any worries or "thoughts" and seemed relatively relaxed. I then started to noticed a few new behaviors such as keeping a closet door open or not wearing certain pjs. When I asked him about this he said "it makes me tic." The OCD lightbulb went off and I new he was experiencing at least the compulsion part but he gave no indication of any obsessive thought. Hi psychologist read a book to him about OCD (not sure of the name) and finally got him to admit he was having "thoughts" that made him tic but would not elaborate. He later told us the thoughts started around the time of the Lyme but he had not had them before. He didn't tell anyone for fear we would think he was crazy. (needless to say this broke our hearts) We ordered the book "What to do when your brain gets stuck" by Dawn Huebner and it has been nothing short of transformational. He told us he has dozens of triggers that when he sees or hears them, he has to tic. They are very common things like numbers, planets, etc. If he does not tic, he fears he will explode or shrink to nothing (i.e. die). The book gently demonstrates how these thoughts are no more than a brain hiccup and nothing bad will happen if he fights back on OCD. It uses humor and methodical CBT techniques to help the child see for himself that he can gain control over OCD. It is empowering, not imposing. Interestingly, my ds did not want to discuss this with the psychologist and we have done it all at home. His "thoughts" have been completely gone for about 3 weeks and his tics are down about 90%. We have also been doing supplements for the last year, follow feingold diet, and have recently taken out gluten and dairy so not sure to what degree these have contributed to the improvement. Finally, a great article was posted in the TS section on Tourettic OCD. Couldn't find the link but the authors are Charles Mansueto and David Keuler , printed in Behavioral Modifications, 2005. It does a great job of explaining how TS and OCD can morph together in a subset of people and result in unique symptoms. It is my ds to a "T" even before the exacerbation from Lyme. Hope this helps and good luck! Lisa

I know many have had a hard time finding Progressive children's chewable multi in the US. I just bought it online at Amazon.com. It still ships from Canada but at least it's easy to find! Good luck.

Hi Cory, My son was dx with TS a year ago and just starting having intrusive thoughts a few months ago. We used a great book called "What to Do When Your Brain Gets Stuck" by Dawn Huebner. Its a workbook to do with your child using CBT methods. It was extremely helpful. We also use Inositol, Progressive multi, mag/zinc, extra C and coQ 10. We have recently switched to gfcf and have followed Feingold for some time. Also, wanted to note that Progressive is now available on Amazon. It still ships from Canada so it takes a while but it's easy to find. Good luck! Lisa

Hi Philamom, I tried to send you a pm but not sure if I did it right. Have you seen Dr. F? I want to take my son to him. I like that he test for Lyme DNA in the gut but want more than abx for treatment. Does he follow ILAD guidelines? Thanks!

Thank you all so much for the good advice. The doxy is for 4 weeks (10 more days to go). Not sure that is enough but I already asked my pediatrician to increase from 3 to 4. I have not yet gone to a llmd. I contacted lymenet and have treatment guidelines from ilad. We were doing many of them anyway for his TS/OCD. I have not yet decided on a llmd in NJ. I think I may try to get on the waitlist for Dr. C in PA and then try to find someone sooner/closer. I am eager to see the test results because I think they may help better understand his TS. Does anyone have experience with an llmd in NJ? Does anyone have a perspective if I should first go to a llmd or an expert in PANDAS? Will a llmd explore down the path of PANDAS?

Thank you so much Wombat for posting this article on Tourettic OCD. This is my son to a "T". I have been asking my son's neurologist, pediatrician, and psychologist to distinguish between the two and have not yet gotten a satisfactory answer. His neurologist dx him with TS and OCD behaviors but his psychologist sees none of the OCD because he does not have the underlying obsessive thoughts or anxieties. I always thought the neurologist erroniously dx with OCD because his tic at the time involved vocal counting. It makes sense it was a compulsive element of his tics. I have learned more on this site than from any of the many doctors we have seen.

Thank you Cheri!! The advice from the Lyme forum is to explore it being a cause of the tics but he has had symptoms of TS since he was 4 (now 9) and we believe it was in my husbands family (undiagnosed). He also has many spectrum-like behaviors, though no spectrum dx. I am looking into an llmd in NJ. Thank you for your support and great advice.

Thank you, these are all good points. I will try to give him his second pill after school so it doesn't interfere with his mag and other supplements. He does take a good probiotic but I am also considering an anti-yeast diet. We had recently started a GF diet so I am worried about more restriction. I had printed out the ilad.org guidelines for Lyme so I will look into additional supplements. We were doing most of them anyway but I need to add co-Q10.

Hi Mary, My son was dx with tourettes 1 year ago but has had tics for 4 years. His symptoms have waxed and waned but they recently spiked about 3 weeks ago. We just found the bulls eye rash 5 days ago and he has been on doxy for a few days. His tics have not gotten worse since the doxy ( no sign of herz reaction yet) but they have not improved either. I'm hoping to see a quick response to the doxy but have not seen any change. I am not yet seeing a Lyme doctor but have been on ilad.org and am reading up. We have spent so much time building his immune system and trying numerous alternative therapies for the TS and am crushed that we now have a new pathogen to deal with. Thx to NewBeginnings for the ginger tip. The doxy is upsetting his stomach but have found he does best first thing in the am, 1 hour before breakfast and right before bed. Our rx says to take on an empty stomach. Any advice on finding an llmd? Lisa

He is 9 and has been on doxy for just 3 days. Do you think it was the doxy that made your son tic? Does he have Lyme? My son's tics started to increase 3 weeks ago, which I assume is due to the Lyme disease. I do give him Epsom salt baths and they do help a bit. I have also been using a mag/zinc cream for several months. I also have been giving him a steam shower as I read that the bacteria do not like it when the body temp is raised. The heat is also supposed to ehelp with absorbtion of the antibiotics. Thanks for your suggestions!

My son's tics went through the roof a few weeks ago. He was just dx with Lyme so I assume that was a cause. He has been on antibiotics for 3 days but tics are still very bad. Does anyone know how long before they will subside?

My son with Tourettes was just dx with Lyme. He still had the bulls eye so its early stage 1 or 2. His tics went through the roof about 3 weeks ago. He is on doxycycline as he is allergic to penicillan. Does anyone have experieince with how long before his tics will subside?

Thanks Chemar, I switched because I had read about people having positive experiences with cod liver oil. I am using a liquid, not a gelcap. I have krill oil but just haven't given it to my son yet. I have read the other positive posts on it so I will try it...just need to get my son to swallow a pill.

Hi Faith, The psychologist we used was referred to us by our neurologist who had heard him speak about treating tics and OCD with CBT. I wonder if there is a cognitive behavioral therapy association that can refer you to someone in your area. I would definitely look for someone who specifically treats TS. The method is to first make the person aware of the tic, such as when and how they do it. Then, they are to choose a less obtrusive, more subtle movement, etc. ideally using an opposing muscle movement. With my son, who is 9, it worked great and also made him less anxious as he was better able to control his tics when he ready wanted to (i.e. in class) and therefore lowered his anxiety overall. I must say, though, there are times when his tics are particularly bad that he says he just can't control and/or change them. His psychologist has also been helpful as just someone he trusts whom he can confide in. I know people on the site have said that it increases stress by making the kids try to control what they can't but it has been very positive for us. Good luck, I'd love to hear how it goes! Lisa

Just a thought, does the multi specify that is it Gluten free? As we are embarking on a gluten free diet, I just read that natural flavor could include gluten.

My son is having a big waxing period and I am desperately trying to find out what has triggered it. Has anyone had problems with too much vitamin A? I recently switched from fish oil to cod liver oil, which is high in vitamin A.

I share your struggle! Last year right after getting a flu shot, my son had the worst waxing period of tics he's ever had. My pediatrician, who has a son w/TS and who is supportive of all the alternative therapies we are trying, still recommends getting the shot. I am still torn. BTW, my son did CBT and found it so helpful. I know not all agree on this site, but our experience was good. It took at least 10 sessions before my son saw results. We stopped going for a few months and now my son is waxing again so we are scheduled to go back to the psychologist. Will post on how it goes. Our therapist is experienced with TS patients so I think that makes a difference. Good luck!

I am new to posting but was glad to see that some have had success with krill oil. I have had it for a month but haven't given it to my son yet because I didn't want to make too many changes at once. In addition to all the positive things mentioned about krill, the phosphatidyl choline helps to repair the myelin sheath which, when damaged, may be a causative factor in TS. Krill also lives in very deep waters making it less susceptible to contamination. I have been giving my son cod liver oil but am worried that too much vitamin A may be contributing to a big waxing period he is experiencing. Has anyone had this problem? The waxing seems to coincide with when I switched him from fish oil. Thanks for any insight.

My son,who is 8, found CBT to be very helpful to replace his tics with less intrusive ones. It did not help to minimize the frequency of the tics but we are doing many other treatments like, supplements, enzymes, and diet that are helping. The CBT therapy helped him to do the verbal component of his tics either to himself or very softly. This was a huge help as he was previously very loud and sometimes screeching. He can usually replace the motor tic with what looks like scratching. this is much more socially acceptable than previous tics. He feels much more comfortable with ticcing in public. I do think it's important to find a practitioner who is experienced with TS.