81lumberjack

Probably used the wrong term (damage), and certainly didn't mean to imply that i knew for a fact that permanent damage is done to the basal ganglia. Meant to just ask what we should do if everything else is waaaay waaaay better except executive function stuff. For a couple of years or so his tics have really been non-existent, his titers are 1/3 to 1/4 as high as they were three-four years ago, major improvement in every area, with the exception of the issues relative to executive function. Several resources I have seen reference that executive function is compromised often times in Pandas kids. We have done a ton of biomedical stuff for various issues over the years and have seen vast improvements in recent years once we focused improving his methylation pathway, which has involved a bunch of supplements, etc I've heard of the Cunningham test but we have not done that. I guess there are some that question if that test is truly indicative of current panadas status, but maybe it's the best out there? Finally, here's a link to an 8 year-old journal article that does suggest that there are occasions where SPECT scans have shown that permanent damage is possible. Read the section on imaging. http://qjmed.oxfordjournals.org/content/96/3/183.full

Our 14yo son had a marginal case of Pandas(high titers, some tics) for 2-3 years, between ages of 9-12. Titers have been way down now for 2 years and tics/most symptoms are gone. Current struggles center around deficits in "executive functioning" skills: initiative, organization,time management,planning, working memory, response inhibition, etc. Apparently, with high strep titers, damage to the basal ganglia can occur that can lead to executive function deficits like those described above. We are pursuing focused behaviotal intervention stuff to work on catching his skills in these areas up. My question here is about actually physically "repairing" the basal ganglia after the strep titers are normalized. Any biomedical or other medical-type suggestions?

Hi, We live in the DFW area. What doctor did you see? Always interested in docs people have good experiences with. Thanks Walt te='Dec 3 2008, 09:34 AM' post='28481'] We found a Dr. who is a Allergy Dr as well as a DAN. He had us send in a urine sample to NeuroScience as well as a stool sample to another lab in Chicago. We still don't have results back from Chicago, but we did get back the NeuroScience results, and our son's GABA, Dopamine, Serotonin, Nonrepenephrine and Epinephrine were elevated. NeuroScience recommended Kavinace 1-2 capsuls 30 minutes prior to morning meal as well as Calm PRT Jr. The doctor here in Dallas has all the NeuroScience products and we started my son on the Kavinace, after only 1 day, his tics were gone! We still don't have the CalmPRT, the doctors office was out. He also had run other blood work and we found out that my son is also allergic to eggs, wheat, milk, so we have to start doing a gluten free diet and well as dairy free diet. I have noticed a huge difference in my son. The doctor was very expensive, but very worth it. He also tested high for candida, which he thought was due to the antibiotics, so he prescribed Niastin (not sure that's how you spell it). Hope this is helpful to others. Kavinace is a amino acid which clams the nervous system. Kavinace contains 4-amino-3-phenylbutyric acid and Taurine to help support inhibitory neurotransmitters. Taurine functions as an inhibitory amino acid, acts as a GABA agonist, may increase GABA synthesis, prevent GABA breakdown and block GABA reuptake. All of these effects enhance GABA function. 4-amino-3-phenylbutyric acid is a GABA derivative that agonizes GABA receptors and easily crosses the blood-brain barrier. Lss

For us, we worry about chlorine because we know our son does not detoxify chemicals very well. Too much chlorine actually disturbs the copper/zinc ratio in his body and manifests outwardly in the form of non-typical behaviors. We have been on the trying to figure a solution to chlorine journey for 6 years. We put a salt based pool in last summer in part because we know we have a history of undesireable issues with chlorine. Community pools will typically have chlorine at 5 ppm to maintain safety with the large swimming load they have to meet. As I said in an earlier post today, we are able to maintain .5 to 1.0 ppm chlorine and we do just fine. Again, we also supplement with 500-1000mg of vitamin C before and after we go swimming per our DAN doctor. Thanks Walt

We've had our son on "Cocobiotic" which is made from baby coconuts and supposedly very high in important probiotic material for a while to work on candida and clostridia with very good results according to labwork we've gotten back. www.bodyecology.com and find the link to cocbiotic.

We've been told by several DAN doctors that chlorine levels around .5 ppm are ok for our kid. We live in Texas and put a salt pool in last year and have done beautifully so far keeping our pool between .5 and 1.0 ppm chlorine. We "lived" in our pool last summer and didn't see any adverse affects on our son. You have to really stay on top of it though to navigate this low-level of chlorine. We haven't had to use any ionizer. We just keep the pool free of organic material (leaves, etc.), super-chlorinate it once every ten days or so during swim season(which gets it up to between 2.0 and 3.0 ppm for a day or so and then the sun knocks it back down to our safe level within a day or so). As far as visiting other pools with higher levels of chlorine...........we give our son 500-1000mg of vit c before and after the pool visit. I can't change someone else's pool but I can change our pool. This is where I need help.... We have a salt chlorinator for our pool. I am not sure what this even means but I heard about the inozier and researched that as well. Let me just say I am completely CONFUSED......................... please help....what does this all mean and what can I do to make our pool water less of a threat to her condition??? I would hate to see her go into another explosion of tics after we have done so well. I do plan and know of the epsom salt bath which is recommended right after the pool. I will and can do this at home but at someone else's house it may be impossible to do it immediately following. Not to mention that I am not sure if I could always do it immediatly following her swims at home either. She usually hits the pool everyday starting in April and I just cannot take this away from her. I have already placed the chlorine filter on her shower head....I didn't have the water checked (we do not drink it) but I just installed it on there anyhow to be safe. It was cheap at lowes and worth its weight in gold as far as the worries. Longer than I wanted here...sorry....just need help understanding the system I have for our pool and if an iniozer is needed and will work with our current pool system. Also sorry for the mispelled words.....type ahead of myself and cannot get the spell checker to work on here. Thanks in advance for everyones advice and help

The Yasko strep protocol is just a subset of her overall stuff that has been discussed here before. But basically it involves "Cleaning up the gut" to attempt to eradicate the underlying conditions that might make someone succeptible to chronic-type strep to begin with. This involves things like xylitol toothpaste/mouthwash/nasal spray, heavy vitamin c , heavy papaya enzyme...some of this is to prevent strep in the sinuses from re-infecting the gut. She recommends things like Myrrh, NEEM, Goldenseal, Uva Ursi (limited length) for active infections. As you may know, her protocol is very involved, and largely based on genetic test results, so there is much more to her overall deal. She also recommends benfotiamine, I think it's a synthetic B3 vitamin, for stims/tics associated with chronic strep. I have more research to do before we start. I think we'll do the bicillin for 3-4 months, hit the Xylitol, vit C, papaya, etc as part of the prophylactic effort and see what happens to our strep titers in 6 months. Hopefully if we get the gut in better shape and keep some xylitol on the sinuses....we can keep any reinfection away and maybe make some progress. Don't know. There is a ton of info on the Yasko discussion board about Strep and her opinions.

I've seen some mention of Bicillin here before. We're going to start Bicillin (long-acting penicillin) next week and wanted others' opinions/experiences. We have 580 ASO on 150 scale and 975 AntiDNase b on a 200 scale I think. We're probably going to start the Amy Yasko strep protocol gradually after we begin the Bicillin. Plan is to do 1 shot/month for 3-4 months, in case we have a latent strep infection somewhere and for prophylactic purposes and while on the shots, gradually begin the Yasko stuff. I'm very respectful about the shot hurting.....so we'll play that by ear. Thoughts?

Recent ASO and Anti DNase B results are as follows: ASO is 558.8 (0-200 is reference) Anti DNase B is 1:960 (<1:170 is reference...school age children) Any clue what it means when ASO is high and Anti DNase B is very low? Thanks

Our son has scoliosis (12%). Chiropractor, who uses corective chiropractic techniques, says this is the stage scoliosis that is very correctable. Do chiropractic now, before it gets any worse. Question is does anyone have a feel for whether the chirpractic intended for the scoliosis will complicate or make tics/ocd/possible pandas worse or better? Thanks

Dr Jeff Bradstreet is a top-notch DAN doc in Melbourne Florida. Cutting edge research, hands-on doc that has years of experience treating kids with a biomedical approach. www.icdrc.org

Giselle, You mentioned clostridia. Did you do any specific interventions to get that stuff down? We've been told that clostridia can actually cause tics/stims. Thanks

Thanks everyone for the specific feedback on the original question as to whether tonsillectomies can serve as helpful treatment for tic/ocd type stuff. Thanks for the good post Kim on being prepared for pain management and overall health prior to a procedure like a tonsillectomy. Please keep the posts of your personal experiences/knowledge coming........it is very helpful. We have not seen Dr Murphy at Shire that so many of you have written about, I wonder if she would have an informed opinion on tonsils and their connection with OCD/Tics/PANDAS? There are about 3-4 articles on PubMed similar to the one I have posted below, including one from the Mayo clinic, that are interesting, but I've not seen any real "studies" yet. Apparently the NIMH and Dr Swedo have not really investigated this possibility, other than opining that they do not see the therapeutic value in true PANDAS cases. Heubi C, Shott SR. PANDAS: pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections--an uncommon, but important indication for tonsillectomy. Int J Pediatr Otorhinolaryngol. 2003 Aug;67(8):837-40. "Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, also know as "PANDAS," is well described in the neurologic and psychiatric literature. PANDAS is associated with obsessive compulsive disorders (OCD) and tic disorders. The streptococcal infections may trigger an autoimmune reaction that exacerbates these conditions. Recurrent streptococcal tonsillitis is one of the recurrent infections associated with PANDAS. This paper reviews the case reports of two brothers, one with OCD and the other with a tic disorder, both of whom improved significantly after undergoing adenotonsillectomy for treatment of their recurrent tonsillitis. A review of the pathophysiology and current understanding of PANDAS is presented." [Abstract]

Our 10 yo son has possible PANDAS. He for sure has some pretty good tics and some OCD. Both his ASO and his Anti DNase b strep tires are very high and have been on successive measurements. ASO is over 4x reference range upper limit. Given past years of repeated strep and some funky enlarged, asymetrical tonsils, 2 docs have advocated removing the tonsils. We're leaning toward doing that for several reasons. Some of our thinking relates to hoping that removing the tonsils will help get the ASO (strep) titres down. We're also on the Autism spectrum, so we're very reluctant as are our docs to do the intense antibiotics. Plus it's probably been awhile since he's had an active case of strep. I know Swedo, et al don't think tonsils impact true PANDAS, but assuming we either do or don't have real PANDAS, but for sure have greatly elevated strep titres, tics/ OCD, etc... anyone have an opinion on the impact of removing the tonsils on any of this. Would you expect the titres to lower after a tonsillectomy? There are limited references in PubMed of tonsillectomies helping to relieve tics/OCD, with some vague references to PANDAS, but not many.