matt

Sandy, I'm glad your doctor's visit went well. Please follow up if you get the MRI work done. Do you know what they are looking for and if it can effect treatment? It seems logical that imaging can be used to figure out more of what is happening with Tourette's. If it works out well for you I'd consider enrolling my daughter for the study (9 years old, no family history for Tourette's and never taken medication). Even if you eventually opt for medication I'd think many of the things mentioned in this forum and in Sheila's book would help. Also, with the jaw tic you might want to research botox injections. I've read where this has helped people who are doing self injurious or painful tics. The problem is that it eventually wears off and you have to continue receiving injections. However, the nature of tics is that they change over time so perhaps the injections would work to get you through this period. I don't know that much about the botox so please don't take this suggestion as any anything more than something you might consider researching more thoroughly. Matt

We're still trying to figure it out ourselves. My daughter also gets the red ears, sometimes just one and sometimes both. We had her tested for food sensitivities and found out she was severe for dairy. Cutting out dairy has improved things (she used to get red ears several times a day) however she still gets red ears fairly frequently. Sometimes they come when she hasn't eaten anything for a while. It is still a mystery we are trying to figure out. I assume she is still reacting to something in her environment. Matt

Giselle, Thanks so much for the additional information. I'll definitely take it slow with the Krill oil and folic acid and look for negative reactions. I saw from one of your previous posts that you used NeuroScince to get the neurotransmitter test. I'll definitely look into this as well. There appears to be some overlap with the ION profile, which tested amino acids, but it doesn't lay it out as clearly as the test you used. Thanks again, Matt

I just got the results of my daughter's tests and thought I would go ahead and post them. One of the tests ordered was 3 parts of the detoxification profile from Great Smokies: measuring sulfate/plasma, cysteine/plasma and reduced glutathione. She tested outside range (low) in all three. This after testing low for homocysteine on the ION panel. According to our doctor the net result of all this is that she has detoxification issues. The other tests looked at immune issues. Her CBC was fine except her lymphocyte count was once again out of range (too high), which has been the case on every CBC I've seen on her. Also, this time we had a lymphocyte subset performed and she was out of range for much of it (percent CD3, Absolute CD3, Absolute CD4, Percent CD8, Percent CD19 and Absolute CD19). Her ASO titers were slightly out of range (211) which is unusual because she hasn't had strep for a couple years now. Finally, her Zinc to Copper ratio was out of whack (Copper 1694 to Zinc 1005). The second diagnosis made from this (plus other factors) is that my daughter likely has an overactive (hyper) immune system. The current plan of action is as as follows: *) Work on getting her vitamin & mineral status from previous ION profile in better order. The doctor emphasized mulivitamin, multimineral, additional zinc, calcium, magnesium, taurine and folic acid. Also we are going to give Krill Oil a try (fish oil supplements have historically made her tics worse but we are hoping this might be OK where others have not). *) Treat PANDAS with a 3 month trial of penicillin injections (we opted for this as the best way since she has issues with many of the dyes used in medications, plus it will avoid the common gut issues involved with antibiotics). If this works then we'll continue. Otherwise we'll try a real short trial of prenisone and look at the possibility of eventually using immunoglobulin IV. *) Perform a urine toxic metal test with DMSA challenge in preparation for possible detoxification this summer. *) Order a SAGE test panel for food and environmental allergies. Also we are going to run a mold and air borne allergy test. Well that is all for now. It feels like we are at last starting down the right path. We had already started adding extra Zinc and Magnesium this last week and so far this seems to be helping. Matt

Are there any other known reasons for supplementing additional Alpha-Ketoglutarate? The ION panel we ran recommended supplementing with 700 mgs of this but the test didn't measure ammonia. I should probably just call and ask the lab but since the topic popped up I thought I'd go ahead and see if anyone here knew of other uses.

Kim & Carolyn, Thanks so much for your posts. My daughter too has problems taking fish oil. At the time she took the ION profile we were supplementing with a small amount of flax seed oil and she showed OK for DHA but low for EPA. For some reason shes either not converting the one to the other or isn't getting enough. It would be nice if there was a way to supplement EPA directly without the fish oils. The ION Profile was the first time I had something like this run and it was pricey but full of interesting information. My DAN doctor has ordered some more test based on the results. My daughter tested low for homocysteine which he felt might indicate some breakdown in the cycle involving glutathione. I'll post a follow-up on this if it turns out to be the case. My daughter isn't a particularly picky eater but I could see how this test would be helpful in this situation. It was very pricey so, unfortunately, the frequency of my repeating it will have to be somewhat limited. Not sure if I could cherry-pick and maybe just get the important parts re-run for less money. A nutritionist we saw before did recommend the 5-HTP and we did give it to her for a while. It may have marginally helped (if that) but I stopped giving it to her recently when she complained of being tired and feeling "weird". I was giving it to her when she was tested. I guess I'm going to check into how much it would cost to get a compounding pharmacist to mix the pills. I'd hope you could buy things a month or two at a time since, given the test price, I don't anticipate getting it repeated any more than every three months anyway. Finally, I think my daughter is allergic to some food dyes so I'm definitely trying to stay away from the flavored medicines. She actually takes (and prefers) the pills quite well. Thanks both again and hope you get to feeling better Carolyn. Matt

Carolyn, Do you by any chance use a compounding pharmacy to get your supplements? We had a ION profile from Metametrix run on my daughter and she showed deficient in Zinc and Magnesium. This despite us supplementing these two, plus B6, in the way of 2 ZMA capsules before bed (20mg Zinc, 300 mg Magnesium, 10.5 mg B6). I went and bought magnesium and zinc separately and began giving her an additional 15 / 200 mg in the morning for a couple days and it appears to be having some positive effects. However, I'm concerned about keeping things in balance because I read that if you supplement magnesium you also need to add calcium, plus you should add taurine, etc. All this can get very confusing. The ION profile gave a individualized formula that you can take to a compounding pharmacy and get put together, which seems nice because you would hope they keep things in balance, plus could seriously reduce the number of pills my daughter needs to take. Anyway, I saw you also had a RBC done and was wondering what you were doing. Her customized Vitamin and Mineral formula indicated adding additional amounts (to the base) of the following items: Vitamin D, Vitamin E, Pyridoxine (B6), Calcium, Magnesium and Zinc. Customized Amino Acids recommended adding the following: 5-Hydroxytryptophan, Isoleucine, Phenylalanine and Taurine. Finally, in the free-form (non compounding portion) they recommended supplementing Alpha-Ketogluarate, Coenzyme Q10 and Fish Oil. BTW, her tests also indicated Aluminum, Arsenic and Cadmium towards the high end, but still within range. Is this something to work on, or does it have to actually be out of range to get nervous? Thanks, Matt

Hello. This is my first post so here it goes... We saw a nutritionist and one of the things he recommended was 5-HTP. My daughter is 9 years old and has Tourette's Syndrome, but as of yet has not exhibited anything in the way of OCDs, which is usually what 5-HTP seems to be recommended for. I just wanted to see if anyone had any reasons why someone should not take 5-HTP. That is, I want to make sure it is both safe and won't negatively impact the long-term hope of "outgrowing" the disorder.