lbee

Hi Angie, Here is a link with PANDAS friendly doctors. http://pandasnetwork.org/researchandresources/find-help/usproviders/ In the interim, have you spoken with your doc about PANDAS? Or have you asked your doctor to do a strep test? If if is PANDAS, you'll need to get some antibiotics. My daughters onset was similar. Lisa

I'm sure there are lots of different OLE. But we use this one http://www.vitepro.ca/Olea-Europaea-42-fl-oz-125-ml.html 1.25ml per day for maintenance or 1.25ml 3x/day in the case of a cold or flu. I haven't given more than 1.25ml yet.

I'm having trouble deciding on an LLMD. I'd be interested in hearing peoples opinions on why/how they selected their current practitioner. If you could choose any LLMD to travel to see who would it be? Feel free to PM me if you don't want to post here. But I'd really like to stick to the east coast and find someone who's good with small children. DD is 5.5 Thanks!

When my daughter started abx, her tics would flare DRAMATICALLY almost exactly 1 hour after each dose. I was going crazy. I nearly stopped the abx. I was told to stay the course and that this was die off which should subside within a couple weeks. Eventually it all calmed down. At the time we thought we were dealing only with strep. Docs up here in Canada won't really run anything else for you. Our first abx was Amoxicillan for 10 days then we started Augmentin and we've been on that since. At the beginning I was told by other moms that the 'herxing' could be even worse with Azithro. I don't know if that's true or not first hand. Since we started our DD has improved. But mild tics still remain. It turns out we have Bartonella as well. I'm going to run Igenex to see if we have anything else. As per rowingmom's advice we are starting to rotate the probiotics. We use olive leaf, mag glycinate without any issue. We just added EFA about 2 weeks ago and I haven't noticed any increase.

I was just wondering if anyone else's child stops ticcing when they have a fever?

I sent an email to that address and it was bounced back to me.

How did you make out with this chubbermommy? We are also dealing with lyme. Just wondering how the tics are? Are you on abx still?

llm, you mention above about having your b6 levels checked. Do you know what significance high blood levels of B6 would have? My searching is coming up with nothing so wasn't sure if you had any ideas. Her B12 is normal (although low normal), she does have CBS A360A++ as well as ++ on 2 of the BHMT's. One doctor suggests methyl b12 and another says hydroxy. So I've done neither yet. Is the ammonia testing done via urine?

Thanks sf_mom, I'm glad to hear he is doing so well. How old was he when he presented with TICS? And How old was he when you started the chelation? I still don't understand why the chelation needs to be done so frequently for some people. Until recently, I naively thought it was a short term treatment. We will do a urine challenge shortly to see what comes out. But I am nervous about it. Right now we are on augmentin/azithro for pandas... the medical docs up here won't acknowledge the bartonella titer as being significant so I need to go to the US and find an LLMD. She's too young for doxycicline, so I'm not sure what they will suggest for her. We haven't started any herbals yet, but on rowinmom's suggestion I did ask my ND about Japanese knotweed so we may slowly add that in. We're still balancing out her other vitamins. When you mention the GcMAF yogurt, are you referring to BRAVO? How are his tics now?

Chris, It's comforting to hear stories like this. Can you share some more detail about your sons onset of tics? How old was he when they started? How long until they got really severe and how old was he when you noticed them disappearing?

Yes, acupuncture actually reduced the tics (and OCD too) We knew my son was dealing with hereditary TS My son's tics were very severe initially (age 9-10) until we started natural treatments (around age 11) and they had reduced significantly within a year after that. They have never totally subsided, but most people who did not know him before do not even know he tics, that is how mild and insigificant they have become. I think I will look into the acupuncture again. Right now her tics are mild. No one would know. I have no idea for certain what's going on with her. In February her tics were extremely noticeable. We tested positive for strep and we started abx. She flared dramatically after each dose until all the tics/ocd calmed right down and most went away. Of course, I also started diet interventions at the same time. So while I strongly believe her triggers are infectious ... I do have a maternal aunt who had terrible tics and trichotillomania when she was young and said she outgrew it in her 20's. Her kids (my cousins) have nothing (maybe a little add). So I know we must have the genetic predisposition for it.... But I can't 100% say for certain if it's genetic TS or PANDAS... though the docs all say it's PANDAS.

May I ask how he tested for your above deficiencies? I'm particularly interested in how he tested for the lithium and vitamin C? My Dd's lithium was zero on her hair analysis and her vitamin C was next to nothing on her OAT.

That's an interesting analogy. I have been doing a lot of reading on the relationship between metals/bacteria/lyme etc. Her IgG sublasses were ok... I think 1 and 3 were on the low/normal side. I didn't realize chelation would take that many years? How old is your son ? May I ask what other treatments/interventions you've used for him? Right now our main/primary symptom is tics.

We had DD's eyes checked a couple times before we knew eye rolling was a tic....this was how she started. The doctors found nothing. We too reduced screen time as well. Chemar, did acupuncture actually reduce the tics? Or did it just help alleviate the discomfort from the tic repetition? When I inquired about acupuncture, the practitioner did ask me what the 'cause' of her tics were.... was it neurological, autoimmune, nutritional? He said the nature of the cause guided the treatment.... I wasn't sure how to answer him since we can't really know the cause.... so I stopped looking into it. But I would like to revisit it. How old was your son when the tics really subsided?

Rowingmom, I don't think I wrote my post very well. What I meant by 'real' doc is that I was finally able to find a paediatrician who was willing to order the blood work for the viruses (lyme, mycoplasma, bartonella etc) and at the same time she ran mercury and other metals etc. As you mentioned, most doctors won't even run their own tests for Lyme or co-infections. I took the paediatrician's requisition to the blood lab at Sick Kids to run the testing. Until this time, when I ever mentioned results from blood/hair etc I had run on my own via a ND /Integrative, those findings were ALWAYS dismissed by doctors along with my concerns. So when I finally got tests done by what they deem to be a 'real lab' by a 'real doctor' then they finally took note.... at least for the mercury. And they couldn't dismiss that something was really going on in this little body of hers. You are absolutely correct in that they want nothing to do with treating the Bartonella. In fact they are calling her result negative and that a 1:64 titre just means there was exposure a long time ago and that there is no infection. When I mentioned the enlarged lymph node and blurry vision they said lots of things cause that as well But they did go on to say that EVEN "IF" she had Bartonella or Lyme, at one point, then she was cured by now since she had been on months of abx for PANDAS (strep). If I thought they were treating bart properly, I wouldn't be exploring my options with an LLMD in the US and looking into chelation up here. Needless to say I met with the integrative doc today re: chelation and I didn't leave with warm fuzzies. He told me to give her Milk Thistle for 2 weeks to protect the liver and then we'll do a urine chelation challenge to see what comes out. So I have some thinking to do. And I need to decide on an LLMD or 'real' integrative doctor that knows what they're doing.