Mayzoo

What test exactly is low? My daughter's ASO and AntiDnase are both very low. They are low even when she was in the midst of 60ish days of strep infection. Her streptozyme is negative and her Antistreptoslysin O Ab is 8.1 with a range of 0-200. However, she is also immune compromised based on testing her IgG, IgA, IgM and IgE. Her immuno states she likely does not make antibodies normally due to her being compromised. Have you tested the Ig levels yet? I highly recommend testing Ig levels prior to vaccinating, and testing other titers before vaccinating for those. IMO, if the immune system is not working properly, I would be leery to vaccinate. My daughter's titers are through the roof for almost everything, and she is not "fully" vaccinated. Her immuno is trying to lower her rubella titers actually (147 with range of immune anything > 9) and she only had one rubella shot at 15mo, she is 11 now. With a faulty immune system, you cannot predict how the body will react to the vaccine.

*Dr. Sesgagiri Rao (Leading PANDAS Physician)Immunologist 972-964-7374 Plano, TX will treat more complicated cases involving PANDAS and Autism *Dr. Bruce Russell (Leading PANDAS Physician)Pediatrician 391-794-1930 Port Aransas, TX will treat more complicated cases involving PANDAS and Austism Dr. Shreenath DoctorNeuropsychiatry and Clinical Pharmacology 713-524-3399 Houston, Texas

Kiddo had something else in her tonsils, but here is a google search that may help you some: https://www.google.com/#q=H.+Influenza+in+tonsils

We home school, so I have not read these, but I think I heard they helped some folks: Pre-done letters for school re PANDAS: http://pandasnetwork.org/resources/for-the-school/ Website re PANDAS and school: http://pandasparentsymposium.blogspot.com/p/dr-jamie-candelaria-greene-phd-bcet.html

Our kiddo (even pre-PANDAS) and our family is complicated. We have left her with a friend of mine a few times when I have to go the doc and hubby is working. Otherwise, hubby and I have not had a "date night out" since she was born. My sister would watch her, but she has lived almost 1800 miles away since kiddo was very young.....that is a long commute for a date night LOL.

Our doctor said no more immunizations for our kiddo, and I believe he said this before her titers were drawn based on her being a PANDAS kiddo. However, I must add our kiddos titers are through the roof for all but one thing anyway. She is actually being treated to lower her titers for rubella. Have you had your kiddos titers drawn yet? It is a good idea to do so as that removes any doubt of "need." Our doc does not want to write a letter of medical exemption because he says all physicians who are doing so are being looked at very closely. In my state, an exemption is easy to get, so I do not want to put any more pressure on him than he is already under for being a PANDAS treating doc.

Our Immunologist does IVIG, usually in his office. I will pm his name. For others, it may help to know where you are located.

We did a urine test called the OAT test from Great Plains Lab: http://www.greatplainslaboratory.com/home/eng/full_oat.asp. Here is a list of the markers it tests for: Yeast and Fungal markers Malabsorption and bacterial markers Oxalate Metabolites Glycolytic Cycle Metabolites Krebs Cycle Metabolites Neurotransmitter Metabolites (we did another neurotransmitter test as well) Pyrimidine Metabolites Ketone and Fatty Acid Oxidation Nutritional Markers Indicators of Detoxification Amino Acid Metabolites Bone Metabolites Indicator of fluid intake I think it was $255.00 and we got the test kit from our Immunologists office. Each of these categories has numerous items tested within them. See the link for a list of what it tests for.

Here are search results (I hope it shows here) from another forum (AutismWeb) about LDN usage: http://autismweb.com/forum/search.php?keywords=LDN&terms=all&author=&sc=1&sf=all&sk=t&sd=d&sr=posts&st=0&ch=300&t=0&submit=Search Some PANDAS kids are on the spectrum, so it depends on what information you are looking for.

We are using bio-enhanced curcumin 500mg (Nutrigold brand) twice a day to control yeast and inflammation. I also give 100mg fluconazole once a week. At last test, kiddos yeast level was fine.

Since your symptoms started with GI, have you been tested for H-pyloria? Also, advil, motrin AND ibuprofen are all the same thing. Please do not double up on that by taking advil and ibuprofen, especially with your GI history.

Sorry, been there done that and it is infuriating. Vent, scream, get angry, go for a long walk, punch a pillow.....then after you do whatever you helps you, get back to what you have to do to help your son and your family.

We have the A1298C hetero mutation. Kiddos neurotransmitters are a bit wacky, so her doc started her on 5-HTP 100 mg and taurine 375mg one each every day. Her serotonin was low normal, but her norepinephrine was high, so the immuno is hoping by bumping up the serotonin a little, it will lower her norepinephrine. She is sleeping a little better, but we have treated so many different things, I am not really which combo has been the most help for that. We have not really noticed any hugely positive or negative effects, but we have not stopped since starting either. It may be helping more than I realize . We do the B vitamins without the folic acid and b-12 (this seemed to help with her bouts of getting severely upset out of nowhere), and we are supplementing with methyl b-12 1000mcg and metafolin 100-200mcg a day.

My kiddo is not seen by that doc, but she begins treatment soon. She is taking mebendazole 100mg twice a day for 14 days, then off for two weeks, then on again twice a day for two more weeks. I have been trying to find out if there is anything else herbal or homeopathic that I should add during that 6 weeks to enhance her treatment. I have heard humaworm or black walnut hull may help, but no raving reviews.

If he is above 120lbs, then usually, 3 days. Less common, up to 6 days. Did he test positive at home or at a docs? If at a doc, what are they recommending? My kiddo is 63lbs and on 375mg every day for her PANDAS.

I never have mold in my washer, and it is fairly old so I am probably just lucky (knock on wood). I did use home made laundry detergent for a while, and it is mainly made of borax. It is in my garage, near a window that is almost always open and I always leave the lid open when not in use. Do you guys leave your lids open when not in use?

My kiddo has whispered since the onset of her PANDAS in 12-2011 (after 3 months of no talking). The only time we had normal voice was for one month in 7-2012 and part of one night after I gave her part of an Ambien to help her sleep. My daughter has what appears to be Abductor spasmodic dysphonia (aka whispering .) They are now of the opinion that this originates in the basal ganglia. "Spasmodic dysphonia is thought to be caused by abnormal functioning in an area of the brain called the basal ganglia. The basal ganglia consist of several clusters of nerve cells deep inside the brain. They help coordinate movements of the muscles throughout the body. Recent research has found abnormalities in other regions of the brain, including the brainstem, the stalk-like part of the brain that connects to the spinal cord." I have been doing some research on this, and I am interested in anyone elses efforts or input about the whispering. We bought our kiddo a personal voice amplifier and it worked to at least some degree, but before we could really get into it, it broke. I have reorder another, and it is not here yet. Okay, I will add more links here as I find them, and everyone can feel free to add to this if you have any input: https://www.nidcd.nih.gov/health/voice/pages/spasdysp.aspx Overall google search: https://www.google.com/#q=abductor+dysphonia+treatment A fourth type of dysphonia is: Whispering dysphonia A fourth type has also been described. This appears to be caused by mutations in the TUBB4 gene on the short arm of chromosome 19 (19p13.2-p13.3).[3] This gene encodes a tubulin gene. The pathophysiology of this condition has yet to be determined. http://en.wikipedia.org/wiki/Spasmodic_dysphonia#Whispering_dysphonia I will have to look into if my kiddo has this mutation or not.

We have not had IVIG yet, but we pursue the play resource kit for kiddo. I read through it, and I think it will help her when the time comes. The people at the help line were very informative. The one I talked to, her son has had IVIG numerous times before. Here is the resource kit link: http://www.immunedisease.com/help-and-support/baxter-resources/therapeutic-play-kit.html

The average milk kefir does have Streptococcus thermophilus. Not all kefirs have the same bacterias and yeasts, but here is a general guide of the common ingredients found in milk kefir made from healthy grains: Bacteria Lactobacillus acidophilus Lactobacillus brevis Lactobacillus casei Lactobacillus delbrueckii subsp. bulgaricus Lactobacillus delbrueckii subsp. delbrueckii Lactobacillus delbrueckii subsp. lactis Lactobacillus helveticus Lactobacillus kefiranofaciens subsp. kefiranofaciens Lactobacillus kefiri Lactobacillus paracasei subsp. paracasei Lactobacillus plantarum Lactobacillus rhamnosus Lactobacillus sake Lactococcus lactis subsp. cremoris Lactococcus lactis subsp. lactis Lactococcus lactis Leuconostoc mesenteroides subsp. cremoris Leuconostoc mesenteroides subsp. dextranicum Leuconostoc mesenteroides subsp. mesenteroides Pseudomonas Pseudomonas fluorescens Pseudomonas putida Streptococcus thermophilus Yeasts Chamaerops humilis Kazachstania unispora Kazachstania exigua Kazachstania exigua Kluyveromyces siamensis Kluyveromyces lactis Kluyveromyces marxianus Saccharomyces cerevisiae Saccharomyces martiniae Saccharomyces unisporus http://www.culturesforhealth.com/milk-kefir-grains-composition-bacteria-yeast/#

We use this brand: http://www.amazon.com/gp/product/B0055713UO/ref=oh_details_o02_s00_i00?ie=UTF8&psc=1 I have never used the prescription version, but both kiddo and I take the above one. I know it has helped me with my arthritis and aches and pains. It is 23.88 for 120 capsules.

To start off with, I rinse and scrub all my dishes prior to putting them in the dishwasher. I hand wash pot and pans. It has been a good while since I last really looked at my dishwasher. I keep the outside and visible inside clean. My dishwasher is probably 7 years old. Now to the ugghhhh. I decided since I found a small amount of mildew just inside the door of my dishwasher to give it a really good cleaning. I got down on my hands and knees with a flashlight and checked every crevice visible without taking it apart. It was shockingly dirty considering food never goes in it. Most of what I found was soap build up, but it is seems everywhere inside the machine. I used powdered soap for a few months twice in the last few years, never again...... The spinning arm crevices where they attach at the seams had soap build up. The door gasket, in all the moldings, inside the drainage areas all had soap build up. Looking into all the grates covering the motor area had some build up. I would have never seen all this gunk had I not been on my hands and knees with a flashlight. This may not be a place harboring bacteria since it is just soap build up, but it cannot be helping any of us either.

For me, accepting that my kiddo has very little control over her vocal tic has helped me accept it better. Trying to get her to stop it is like asking her to change the color of her eyes, and only increases her stress load for any short period that she may manage to suppress it. My kiddo hates her vocal tic with passion. She begs me to make it stop. I feel I was only adding to her burden when I did not accept her tic as simply a part of our life right now. My job is to lessen the trauma this condition is causing her and teach her to accept that which she herself cannot change. Kiddo currently has echolalia, and speaks only in a whisper. In the past she has had a barking tic and a "hollering" tic. Neither the barking or hollering went over well in the public, but I had to learn to stop caring what others thought. We do home school, so that removes one obstacle of dealing with tics anyway. Before I truly accepted that kiddos tic was beyond her control, it drove me bonkers. I would get upset, stressed, headaches, tense and cranky a lot. Now, things are much better around here, and two of the tics have disappeared with a change in her abxs for now anyway.

I do not recall how old your kiddo is. Can you check to see if his throat is inflamed or red? My kiddo will let me look sometimes. Depending on his weight, 12.5mg may have been the better dose. Yes, it takes up to six weeks to see effects from a new introduction of an SSRI, and a few weeks to see the difference an increase or decrease makes. We saw a great improvement in anxiety (fears) when we introduced Melissa Lemon Balm 500mg twice a day (morning and night). I was pleased enough with my kiddos improvement that I took her off her Zoloft, which was only minimally helping anyway. I was actually able to spin in a circle without risk of knocking down my kiddo who had been my shadow for MONTHS on end. It even helped reduce nightmares at night.

TACA is found here: http://www.tacanow.org/ I think this is a link to the events: http://www.tacanow.org/events/parent-education-events/

I hope you get an answer soon .