Mayzoo

Thank you. I just do not want her genetic information on the internet attached with her real name. At some point, I would be concerned about theft of information through hacking or physical theft of hard drives. Or, a new law coming about stating all genetic companies must turn over their data to a governing authority for some version of this insurance stuff we have now going. Call me paranoid, but it is HER information I would be gambling with and I will do all I can to protect her now and her future.

I am looking into doing the 23andme test for my daughter. I am wondering if I can use a pseudonym to register the kit with? She already has such a difficult road ahead for insurance, I cannot do anything to make her insurance woos any worse than they already are. I know insurance is not "supposed" to discriminate based on genetic information, but I also know this law is subject to change in the future as is the laws of Obamacare where pre-exisiting conditions cannot be used as a means to deny coverage. Those ideas are an idealistic concept, while reality is often very different. Also, can I pay for this test using Paypal, or is it a direct credit card payment?

I was selective in what vaccines I allowed from her birth. I allowed the ones I received (HIB, DTaP, MMR, Polio), but not the newer ones. My reasoning was, the newer ones do not have long term effects for reproductive issues, etc..., so I opted out. I only did one MMR vaccine because kiddo spiked a high fever that night and for a few days after. Now she is 11 and just had her titers drawn and they are ALL very high for MMR, polio, and tetnus, so she should not have had the second one anyway. Now, I will not likely be giving any more unless a titer shows a great need. Everyone must decide this for themselves. Live vaccines for the siblings are more likely to cause your PANS child to flare than the "killed" vaccines.

Once you get the thrush under control, ask your dentist for a script for Peridex mouth wash. It is an antibacterial that heals mouth ulcers fairly quickly. It stings when you first use it, but the ulcer begins to feel better the next day.

I had what could be called hyperactivity for the first week, but it was a refreshing change from feeling like a cross between a slug and a sloth, so I never complained . It was not a bad type of hyperactivity. I now only have more energy than I had before starting, and that could be because I simply feel better.

I am taking 500mg twice a day for joint inflammation, and I have noticed a great deal of improvement. I also seem to have more energy, and my headaches are fewer and easier to treat with OTC meds. I am also experiencing a runny nose more now, which is a possible side effect. My daughter is up to 400mg twice a day, and I cannot say I see a lot of side effects or improvements, but she has had some issues since before starting this that we cannot seem to get past. So if this is exacerbating her issues, I would not know. She has emotional liability, decreased energy, and worries a lot.

Her daddy and I were outside working on a downed tree for a few hours today. Kiddo was able to be inside (cold and rainy here) playing her Nintendo or reading books by herself for the whole 3ish hours. I checked on her frequently, but she never got upset, never melted down, never ran outside screaming bloody murder, and seemed to be having a good time on the whole. Like everyone here, I am all for almost anything that allows her to feel comfortable, relaxed and reasonably happy. I would recommend any one dealing with moderate to severe anxiety to give it a try. I am sure it will not work for everyone, and it may not work for us forever, but it is working for now and for that I am unbelievably grateful.

I am having a lot of trouble with cut and paste on this board lately, but lets see if I can get a link up: More: http://chlamydia-pneumoniae.org/treatment.htmlhttp://chlamydia-pneumoniae.org/treatment.html The most commonly used antibiotics are macrolides such as azithromycin or clarithromycin. If a test of Chlamydophila pneumoniae as a cause clearly shows, switch to the therapy to doxycycline, which is fewer side effects and slightly more effective against this bacterium. Sometimes a quinolone antibiotic such as levofloxacin initiation of therapy is used, but has more side effects. The treatment usually lasts 10 to 14 days.

You can get them form almost anyplace that sells supplements. I live in the country, so I get mine online. Here is a search for them on amazon.com: http://www.amazon.com/s/ref=nb_sb_noss_2?url=search-alias%3Daps&field-keywords=charcol+caps&rh=i%3Aaps%2Ck%3Acharcol+caps

I was happy to notice results with the first dose. My headache went away and a sense of tranquility washed over me. Kiddo was able to be in a room separate from me by the next day. I was able to spin around without having to worry about bumping into her . Each of us have a different response and that is just part of the miracle of each of our uniqueness . But, this uniqueness makes treating stuff more difficult

I take 2 excedrin and one or two lemon balm when I get my tension headaches too and it helps me a LOT!! I used to have to take 2.5-5mg hydrocodone/apap for my headaches with the excedrin, now 80% or more of the time the excedrin and lemon balm kick them just fine!!!!! I am super happy about that. Right now if I get real short on patience, I will take one as well. I have mild ocd and mild depression as well, and my kiddo needs me to have all the patience I can beg, borrow, or steal as it is, so I do what I have to do to give her my best since she deserves it. She already has so much to deal with she does not need a grumpy mommy too. Kiddo was only on 12.5 mg of zoloft every day so we went to 12.5mg every other day for a two weeks and then we are stopping. I have some on hand should I notice any problems with stopping it. I believe she took her last dose this morning, but I have to check her pill minder to be sure. I have never really seen great results from the zoloft anyway for her, so I do not expect any issues with weaning off, but I am going to watch closely.

The doc has not called yet about results, but I have the results from labcorp. There were many discoveries in her blood work, some expected, some not expected. One I am trying to understand is very high lactic acid (34 with normal at 4.5-19.8). It was so high, they noted that they tested it several times to verify and put a red "alert" beside the results. Her BUN and BUN/creatinine ratios are high as well. Now I have wonder if she has a metabolic disorder or kidney disease or something else . Her lymphs is high, her IGA and IGG are both low, she has a single MTHFR A1298C mutation, HHV 6 is high, TSH is high (but free t4 is low normal), EBV is super high. Her ASO and Dnase are still very low, so I guess I need to change her dx to PANS not PANDAS . Several other minor issues that are probably no big deal. Some minor electrolyte imbalance etc....... Her MMR, and Polio antibodies are very high despite only getting one MMR vaccine total so far. It appears the doc forgot to order the cocksackie A/B test. Does any one else's kids have high lactic acid and high BUN and BUN/creatinine levels? If yes, what were they diagnosed with?

It is working great for us! We are getting off zoloft because this is working so much better for her separation anxiety and nightmares. I have tried two brands, and one did seem to work better than the other. We are using Nature's Way 500mg caps morning and evening. It is dirt cheap as well, so a major plus ($4.60ish for 90).

I am not certain how to convert the results, but I bet someone on here will know. Being on ABX should affect the results, but only if the titers had been elevated prior to starting the ABX. Then they should help the titers go down. My kiddos titers are almost the same as yours. She has an ASO of 6 and a dnase of 95 even during an active infection. I suspect my kiddo does not make antibodies to strep which is why her titers are low. We are waiting on lab results that will show her Ig levels (I suspect her levels will indicate an immunodeficiency). If my kiddo (and maybe yours too) does not make antibodies to strep, then strep antibodies are not her trigger. We are waiting for numerous lab results that will show if she has a common co-infection that could be the trigger. Her new immunologist agrees with all my suspicions. Strep breath and sinus infection breath are similar in my kiddo. We recently had kiddos tonsils removed and that has helped her strep breath. She had an active infection in her tonsils despite a year of ABX (actinomyces). My kiddo's lymph nodes are swollen and sensitive to the touch. That is a sign of immunodeficiency. Does your kiddo have their tonsils still? Has your kiddo been evaluated by an ENT? We had been told over the last year that kiddo's tonsils look fine even when she had strep. Even the evaluating ENT said they look fine. Upon remove, they were hypotrophic and consistent with chronic infection.

I was looking forward to the Cunningham test, but at a $1000.00 we simply cannot swing that. We are already spending $800.00+ on four other urine tests, and who knows how much (yet) on the ten vials of blood work already done. With all the other expenses of docs, supplements and traditional meds, this is just way too much for our budget.

A friend of mine's daughter currently has a bi-polar diagnosis. I have also wondered frequently why so many children are being diagnosed with serious mental illnesses. I have seen as young as 3 years old being diagnosed as bi-polar, and as young as 4.5 with a type of psychosis. My friend is going to do some research and have some tests run on her kiddo. I guess only time will tell if she has any infections or not.

My daughter was given liquid versed at the age of 18 mo. for a surgery she needed to have and again recently for her T & A. It was helpful both times. Dasu, liquid versed should be an option for a four year old unless she has other medical conditions or allergies. Maybe you will get a faster answer from the psych if you ask them if liquid versed is acceptable instead of them needing to research several meds. Then they can check on one med instead of several.

Not much new information from the appt yet until we get labs, but what I was shocked to hear was that in '98 he was seeing 6-10 new patients a YEAR with PANDAS. Now, he says he is seeing a new patient EVERY DAY. I surely wish they could figure out what is "causing" this so we stop some of the suffering for those afflicted now, and maybe prevent it for those in the future.

I will look around a bit later, but from a quick search I do not see the pandas or lyme one. Under what section are they found? Thanks

SPECIAL COMMENTS: Herbs that taste bitter are known to be beneficial for the stomach and GI tract. Para-A is extremely bitter tasting. Para-A can be placed into gelatin capsules for better compliance. Consider adequate drainage remedies such as Liver Drainage, Lymph Drainage, etc., during any parasite treatment. http://www.evitamins4u.com/para_a I cannot find an answer for the mepron, but I think it would be fine in a capsule or a non-acidic smoothie. I recommend you ask your pharmacist for ideas on that one.

Hope this helps you with a few of your questions you may have: http://www.umm.edu/altmed/articles/goldenseal-000252.htm

Yes, just separate them by 2-3 hours from the abx so the abx do not kill them before they get a chance to work. Many probiotics have both those in them already.

Not sure if this helps: "What does the test result mean? ANA tests are performed using different assays (indirect immunofluorescence microscopy or by enzyme-linked immunoabsorbant assay, ELISA) and results are reported as a titer, often with a particular type of immunofluroscence pattern (when positive). Low-level titers are considered negative, while increased titers, such as 1:320, are positive, indicating an elevated concentration of antinuclear antibodies. ANA shows up on indirect immunofluorescence as fluorescent patterns in cells that are fixed to a slide that is evaluated under a microscope. Different patterns have been associated with a variety of autoimmune disorders, although overlap may occur. Some of the more common patterns include: Homogenous (diffuse) - associated with SLE and mixed connective tissue disease Speckled - associated with SLE, Sjogren syndrome, scleroderma, polymyositis, rheumatoid arthritis, and mixed connective tissue disease Nucleolar - associated with scleroderma and polymyositis Centromere pattern (peripheral) - associated with scleroderma and CREST (Calcinosis, Raynaud's syndrome, Esophogeal dysmotility, Sclerodactyly, Telangiectasia) An example of a positive result might be: "Positive at 1:320 dilution with a homogenous pattern." A positive ANA test result may suggest an autoimmune disease, but further specific testing is required to assist in making a final diagnosis. ANA test results can be positive in people without any known autoimmune disease. While this is not common, the frequency of a false positive ANA result increases as people get older. Also, ANA may become positive before signs and symptoms of an autoimmune disease develop, so it may take time to tell the meaning of a positive ANA in a person who does not have symptoms. Most positive ANA results don't have significance, so physicians should reassure their patients but should also still be vigilant for development of signs and symptoms that might suggest an autoimmune disease. About 95% of those with SLE have a positive ANA test result. If someone also has symptoms of SLE, such as arthritis, a rash, and autoimmune thrombocytopenia, then she probably has SLE. In cases such as these, a positive ANA result can be useful to support SLE diagnosis. Two subset tests for specific types of autoantibodies, such as anti-dsDNA and anti-SM, may be ordered (often as an ENA panel) to help confirm that the condition is SLE. A positive ANA can also mean that the person has drug-induced lupus. This condition is associated with the development of autoantibodies to histones, which are water-soluble proteins rich in the amino acids lysine and arginine. An anti-histone test may be ordered to support the diagnosis of drug-induced lupus. Other conditions in which a positive ANA test result may be seen include: Sjögren syndrome: Between 40% and 70% of those with this condition have a positive ANA test result. While this finding supports the diagnosis, a negative result does not rule it out. The doctor may want to test for two subsets of ANA: Anti-SS-A (Ro) and Anti-SS-B (La). About 90% or more of people with Sjögren syndrome have autoantibodies to SSA. Scleroderma (systemic sclerosis): About 60% to 90% of those with scleroderma have a positive ANA finding. In people who may have this condition, ANA subset tests can help distinguished two forms of the disease, limited versus diffuse. The diffuse form is more severe. Limited disease is most closely associated with the anticentromere pattern of ANA staining (and the anticentromere test), while the diffuse form is associated with autoantibodies to the anti–Scl-70. A positive result on the ANA also may show up in people with Raynaud's disease, rheumatoid arthritis, dermatomyositis or polymyositis, mixed connective tissue disease, and other autoimmune conditions. For more on these conditions, visit the American Autoimmune Related Diseases Association patient information page. A doctor must rely on test results, clinical symptoms, and the person's history for diagnosis. Because symptoms may come and go, it may take months or years to show a pattern that might suggest SLE or any of the other autoimmune diseases. A negative ANA result makes SLE an unlikely diagnosis. It usually is not necessary to immediately repeat a negative ANA test; however, due to the episodic nature of autoimmune diseases, it may be worthwhile to repeat the ANA test at a future date if symptoms persist. Aside from rare cases, further autoantibody (subset) testing is not necessary if a person has a negative ANA result." http://labtestsonline.org/understanding/analytes/ana/tab/test

How much does she weigh? The formula for lbs to kgms is: # lbs/2.2=kgms Dosage Guidelines (social anxiety): A typical adult dosage for Vistaril is 50 to 100 mg up to four times a day. Dosages for children under 6 years old are 2 mg per kilogram per day in divided dosages, not to exceed 50 mg per day.

Oh, super congrats for getting there!! Glad you found something that worked fairly well for the trip. That is great and thanks for the update. Hope the next few days have some great play time while you relax and prepare for the visit. Build a snowman for those of us "playing" in the 70's or greater . I will try to plant part of my garden tomorrow while you build a snowman !!