Mayzoo

Here is one I found on www.pandasnework.org. Dr. Ayla Wilson, ND Naturopathic Medicine Vancouver, BC 604-988-1411

Both my daughter and I are taking it. It is helping me with joint pain and headaches a decent amount so far. As far as kiddo and die off etc, it is hard to say right now since we have both had bronchitis since starting it (unrelated) so I cannot tell what symptoms we have that are from being ill and which may be die off (fever, fatigue etc). I feel your pain on the starting many different things seemingly to no avail. We have more than our share of failed attempts stored away in a cabinet . I did decide that for this we would try BCM-95 instead of Enhansa. Both are Bio-enhanced curcumin longvida, I paid $23.00 for sixty of the 400mg capsules as opposed to how much Enhana costs $58.00 for #150 of the 150mg capsules.

I use a product called Ex-stress or Night Rest, which is a valarian, hops, passion flower, skull cap, and camomile combo (there are many different ones of these by many different names). If need be, I can dose this with a benadryl, or you can dose it with the rx med you have as well (probably I would not do all three together), What rx did the doc give you for her anxiety if I may ask? I "assume" it is valium or xanax, but of course, I am not positive. May not work for you, but one thing I have found is that if I am calmer, kiddo is calmer; if I am uptight, kiddo is more uptight. Sooooooo, in stressful times (blood draws, or surgery) I pack enough for us BOTH!! I can take the valarian prep without it causing drowsiness, so I am able to drive in "big town" traffic with anxiety. Vistaril and Atarax are the same thing. They are both Hydroxyzine HCL (one is a tablet and one is a capsule) which is another antihistamine. It is still a prescription drug, I believe, only because no one ever did the studies for over the counter safety.

ASO tests are not 100% accurate in determining whether a person has had a recent strep infection. For example, my daughter's ASO was 6 and her DNASE was <95 while she was in the middle of a 45 day strep infection. Her body apparently does not fight off strep well. However, a high ASO is a great indicator of recent infection. Here is a good site that explains what the ASO test is for: http://labtestsonline.org/understanding/analytes/aso/tab/test "The ASO test is primarily ordered by itself or along with an anti-DNase B to help determine whether a person has had a recent streptococcal infection."

As of some time next week, I should be making both milk and water kefir. I bought the grains and will make it at home since it is dirt cheap that way, and I know exactly what will be in it. It looks super easy to make, and I and kiddo are both looking forward to making it. I already grow sprouts in the house and have a garden outside along with edible flower gardens. We are already in the mindset of doing things our self at home, so this should be a very easy transition for me. I am now looking into a yogurt maker also. This should be healthy, fun and educational. Gotta do what we can to eat healthier and improve our immune systems .

I did find some Kefir posts with the search (when I spelled it correctly) but I did not find the post from the person who was thrilled with this. Probably overlooked it :/. Thanks

I am going to start making kefir. I know someone on here mentioned they were using it and loved the benefits, but I do not recall who that was (a forum search did not come up with anything). If whoever that was could PM me or tell me on here if you make yours at home, or do you buy a pre-made? If you make them at home, who did you buy your grains from? Also, are you using water or milk kefir? I just bought some water kefir grains, and I am looking into milk grains since I want to make this at home, but I would like to know if I am getting grains from a "good" source. Thanks a bunch!!

Here are two URLs that may help you find a PANDAS friendly doc: http://pandasnetwork.org/resources-new-research/providers/ http://www.latitudes.org/forums/index.php?showtopic=5023 Finding a PANS friendly doc is vital to getting your journey off to a good start. Also, keep a log of her behaviours as far back as you can remember to now. Make detailed notes of things that help or seem to hinder her progress. Also keep a record of progess/regression with any addition of supplements or ABX. Logs are very important.

Do this brand usually come with a long exp date? The last box I bought had a short date on them (3 months) for 25 tests. I sill have maybe 10 of those and just checked them and they are still operating fine. I guess turn around on these things is not great making it difficult to get long dates on them.

What brand do you use when you buy a strep test kit for at home use? Are you pleased with your brand? Have you tried a brand you did not feel was accurate? I am looking into buying Medchoice this time. Thanks.

I had never heard of a rife machine until now. I am reading up on them a bit, and I am curious what swayed you to try this route? So far as I know, we do not have lyme in the picture for any of us (DD was - on a western blot and hubby and I have not been tested). So I am not in the market or anything, but I like to stay up to date on various alternative practices/treatments that are out there. I am sure this is incorrect, but so far they **look** a bit like a tens unit that is connected the hands instead of the back or other injured area. I am sure they work differently.

My daughter has a vocal tic that only seems to be around when she runs a low grade fever. Certain behaviours return as well with the low grade fever ie seperation anxiety and minor nightmares. I am unclear which came first most the time now......the low grade fever or the minor exacerbations. Regardless, right now the low grade fevers usually resolve on their own in a day or two unless she is beginning to actually get sick. My assumption is that she is exposed to something, reacts with a low grade fever, enters a minor flare, then pulls back out which resolves both the flare and the fever. Currently, we are on some natural abx, and natural anti-virals to boost her traditional abx. She is also taking some supplements to boost her immune system as well. Since I started these, she seems to pull out of these blips fairly quickly, but they are still occuring resonably frequently. We are seeing an immunologist on the 4th to see if anything is going on in our picture I am missing, and what else we need to do to boost her immune system.

My kiddo was always constipated as well. I have put her on Sundown Inulin Prebiotic, which is a fiber, and this has resolved most of her constipation so far. I started her on this because it helps boost the immune system (gut health), so the constipation resolution is a bonus.

I experience it, and I am trying lemon balm with some decent sucess. This causes me sleep difficulties as well, and the lemon balm seems to help both in the day and at night.

I used to be amazed by my child's golden health. Then came PANDAS. Now, I realize she gets sick without physical symptoms and only has behavioural symptoms. I have begun to believe she was likely ill more as a younger child than I could have ever been aware of because she likely never had symptoms of illness then either and at that time, it rarely triggered behavioural symptoms. Not sure about PANDAS since birth unless you were ill while you were pregnant and her antibodies (or your antibodies maybe?) began attacking her while she was in the womb or just after birth.

My kiddo, it retrospectively appears, had PANDAS for a long time before we actually developed enough symptoms to pinpoint it down as PANDAS. From the age of 4 or so on up, she has had a variety of bouts that lasted a few days to 6-8 weeks that had only 2-4 symptoms that were always attributed to one of her other dxs so they were never treated and spontaneously resolved. In Sept 2011 she developed enough spontaneous symptoms (an entire page single spaced, typed) to pin down a PANDAS dx, and she has only been 95% for one month since then (July 2012). Otherwise, we have been on the roller coaster of completely debilitated to roughly 70% over and over again since then.

I do not think a T & A would have prevented my daughter from acquiring PANDAS, but I will never know of course. It seems she had been having asymptomatic strep for a while prior to our actual bout, that was also asymptomatic, that brought on the DX. I would have never known she had strep in January 2012 had I not been taking her in for blood work to see if she may have PANDAS. She had several mini-pandas flares that resolved themselves over a few days to a few weeks, but no one had a clue what was going on and the behaviour was always attributed to one of her other DXs. I was always told kiddos tonsils "looked fine", even during the T & A evaluation. When they were removed, I was then told they were typical of chronically infected tonsils. The T & A has helped alleviate some of her symptoms. She had been running a low grade fever for 6-8 months prior to the T & A, and her pupils were dilated about 90% of the time prior. Now her temp is normal most the time and her pupils are dilated maybe 20% of the time. She has slept through the night a lot more since the T & A than the preceding 6 months or so as well. She is having fewer nightmares and they seem less severe when she does have them. On the complicating side of things, I did add zithromax prior to the T & A and have not removed it either since she did culture bacteria in the tonsils. So some of the improvements maybe from adding low dose zith to her keflex. We are seeing Dr. Rao for the first time on the 4th so I am seeking his advice about the particular bacteria (actinomyces) we are dealing with from the tonsils then.

Enhansa comes in a powder and a capsule. I am trying the progressive lab capsules to titrate up when they get here. My understanding is that the caps open well and the powder can be masked in foods (but not liquids) easily for titrating up. I have not looked for a liquid or a chewable, but it is a strong spice so the flavor may be hard to mask in that formula.

I am comparing products and prices. Has anyone tried one then the other of these products? What was your experience? Was one remarkably better than the other? What brand BCM-95 did you try? Here is an article on the BCM-95 for those not familiar with it: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2792534/. The Enhansa appears to be $58 for 150 capsules of 150mg. The BCM-95 by Jarrow is 22.59 for 120 of the 500mg (not good for titrating up obviously, but maintenance should be okay) and the Progressive lab version is $23.89 for 60 caps of 400mg. I am excited to try this product on my kiddo, but of course if I can get a similar product for less $ that works as well, or almost as well, I would love to do so (as I am sure everyone here would also). The cost of supplements can eat a budget alive, especially in the trial and error stage. Thanks for any input.

Because of other medical conditions, a spinal tap is extremely dangerous for my child and would have to be done by a specialist. She has never had one, and we would look into other alternative diagnostic measures for our kiddo.

They all sound okay to me. Is the doc checking her liver enzymes? Also, here is a drug interaction checker so you can run each of her meds through it now and in the future . http://www.drugs.com/drug-interactions/melatonin.html

He can culture the test instead of a rapid if he is concerned. I doubt his concern for a false positive on the rapid exceeds your concern for your child's long term well being. Continued Strep is not to be taken lightly, so he cannot in good conscious do nothing to discern her current health status. First do no harm, and to assume she cleared the strep can do great harm. I would insist on a culture being done.

Yes, it could be yeast. Have you been giving probiotics during the ABX treatment? My daughter used to have sleep issues, waking up in the middle of the night rowdy and playing for hours, even before we started abx treatment. When I started giving her probiotics, that resolved most of her sleep issues most of the time.

Our first noted flare, that had sufficient symptoms for me to find out about PANDAS, was in Sept 2011. We saw the neuro 3 times and the psych twice between Sept and Dec 2011 before I found out about PANDAS. I discovered PANDAS on one of many sleepless nights through googling "nightmares + personality changes" in January. We started our journey in January simply because it worked out that way. Our kiddo was born in February, and does not have a set schedule for seeing her pedi since she sees so many other docs through the year. There were no vaccines related to our daughter's flare in Sept. 2011. My family does not get the flu vaccine. Her last vaccine was when she was 6. Retrospectively, she began exhibiting symptoms around 4 yrs old. Since she has so many other concomitant DXs, it is harder to pin down which is causing what sometimes. She did have a sore throat that triggered the flare in Sept. 2011. Hope this helps you pull together a theory. It would be great to see a compilation of our stories to look for similarities.

My daughter was only cleared of strep after 45 days on the same ABX. We switched around three times in the beginning, without any effect from any of them. Then, when we stayed on zith for 45 straight days at the "pharyngitis" strength (250mg every day for a 50lb child), she finally came up negative on the rapid and culture for strep. HOWEVER, my daughter has tested negative for lyme, so I am not certain how that will play into things. I would imagine it will make it harder to treat the strep. Doxy can treat both lyme and some streps, but with her age they may not wish to risk the staining of permanent teeth. Maybe your pedi would consider prescribing a longer term of one ABX that is known to treat both (yet does not cause the staining) since your 3yr old kiddo is positive for lyme and strep?