Mayzoo

Right now, genetic information is protected by federal law and not accessible to insurance companies. Insurance companies are currently not allowed to discriminate based on genetic information: http://www.genome.gov/10002328. I have not read the specific law since I know laws change. To protect my child we had a distant relative pay for the kit on their credit card, we used a friends address to have the kit mailed to and a fake name to register the kit. I am more concerned about future laws that may allow insurance companies access by court order etc..., hacking into the system, or hard drives being stolen from corporate 23andme. As much as possible, we are trying to protect kiddos data for her future. It may all be for not, but at least I can know I tried my best to keep her secure.

I have no idea what genes these are, but it appears to be very common for kids with PANDAS to have: Primary immune deficiency (contributes to candida overgrowth due to abx usage). Hypothyroid (possibly subclinical autoimmune hypothyroid). Gaba/glutamate imbalances (kiddos PANDAS immuno says she is one of the handful of patients he has that her levels are a bit high, but appear to be working together as they should). A few others come to mind, but not sure how common they are (or if they are genetic) ie low vitamin D3, and yeast/neurotransmitter imbalances. LLM and a few others are good with the genetic side of things; I still have soooooo much to learn.

We have a lot of high viral titers, but we started with amantadine since her highest was rubella. What is the doc trying to treat with the acyclovir? Is he on any antibiotics as well?

I only quickly skimmed these articles, so there may be more helpful data in them than what I quoted. Pandasnetwork.org article under "How long does an exacerbation last?": http://pandasnetwork.org/prognosis.html "There are times (cases #1 and #2) where the exacerbation takes 4 to 6 months to remit." NIMH article under "what is an episodic course of symptoms?" : http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questions-about-pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcal-infections.shtml "The tics or OCD then seem to gradually fade away, and the children often enjoy a few weeks or several months without problems. When they have another strep throat infection the tics or OCD return just as suddenly and dramatically as they did previously." This one shows on the bottom of page 4 duration of illness is 2.8 years for PANDAS, BUT it shows 3.+ for non-PANDAS, so may not help much: http://intramural.nimh.nih.gov/pdn/PANDAS-REF6.pdf

I have not tried this one. Here are a few a good articles on this one. If you buy it, try to make sure you buy from a reputable mfg. since 2/3 of the products tested in that article were either substandard or fake. Maybe ask the LLMD if he knows of a particular brand that his patients have done well on. http://www.ncbi.nlm.nih.gov/pubmed/17207150 http://www.erowid.org/plants/wormwood/wormwood_basics.shtml Please be aware of these potential side effects: Special Precautions & Warnings: Pregnancy and breast-feeding: Wormwood is LIKELY UNSAFE when taken by mouth in greater than food amounts. The concern is the possible thujone content. Thujone might affect the uterus and endanger the pregnancy. It’s also best to avoid topical wormwood, since not enough is known about the safety of applying wormwood directly to the skin. If you are breast-feeding, don’t use wormwood until more is known about safety. Allergy to ragweed and related plants: Wormwood may cause an allergic reaction in people who are sensitive to the Asteraceae/Compositae family. Members of this family include ragweed, chrysanthemums, marigolds, daisies, and many others. If you have allergies, be sure to check with your healthcare provider before taking wormwood. A rare inherited blood condition called porphyria: Any thujone present in wormwood oil might increase the body’s production of chemicals called porphyrins. This could make porphyria worse. Seizure disorders, including epilepsy: Wormwood contains thujone, which can cause seizures. There is concern that wormwood might make seizures more likely in people who are prone to them. http://www.webmd.com/vitamins-supplements/ingredientmono-729-WORMWOOD.aspx?activeIngredientId=729&activeIngredientName=WORMWOOD

The genetic testing can be done without a doctor at several places. The one I am familiar with is 23andme. It costs 99.00 for the first person and 79.00 each for everyone else you want to test IF you pay all at once. It is a spit test not blood. https://www.23andme.com/ It would be helpful to get everyone in the family swabbed for strep to make sure it is not a contributing factor now. My daughter, and many others here, can have strep without any physical signs, but the behavioural signs are quite evident. I agree you need to get his IGG levels checked.

Only symptoms we get now are the behavioural issues and vocal tic.

Prayers and positive energy being sent your way.

Thanks EAmom, I guess I should refer to her a PANDAS case with high viral titers as well. We never did a culture on her until we finally got a negative rapid. Then I had the office run the culture to make sure it was not a false negative. It came back negative as well. By that time she had confirmed strep for almost 60 days, and had likely had strep for near six months if not even longer . We, of course, are second guessing many things in the past that we will never have an answer for.

Hmmm. My daughter presented with overnight symptoms during an episode of sore throat and fever. A stand in doc did not do a strep test, but gave abx. Fever and sore throat resolved, but PANDAS symptoms remained. Three months of research later and I find out about PANDAS. I take her to her regular pedi just to get blood work done and she has a positive rapid test then with no physical symptoms, and she remained positive for almost 60 straight days. ABX are given continuously, and her PANDAS symptoms *slowly* begin to resolve even while she is still positive for strep. After she becomes negative for strep, great strides are made in her symptoms. At that time her ASO was 6 and her antidnase was 95 (no streptozyme test). Fast forward 14 months, symptoms are still come and go and tank greatly with any infection. Her ASO was 9, antidnase was 86 and streptozyme is negative. Her immuno has not told me if he has directly reassingned her dx, but he has said that since she has very low strep antibodies, it is unlikely that those few antibodies are the cause of her issues, so he looked for other high antibodies that could be the cause, and boy howdy did we find some very high antibodies elsewhere. What I gather from what you are saying EAmom, is that even with almost no strep antibodies present, you still feel that my child would be defined as PANDAS not PANS? Since it is antibodies that are the cause of the issues, I am not sure I get that. I will ask her immuno for a concrete dx at our next visit. Before seeing the blood work, he agreed she was classic PANDAS. Kiddo concretely had 14 of the 15 diagnostic symptoms as defined in January 2011. She likely had all 15 but it was difficult to tell if she was depressed with her expressive delays. She was out of the blue stating daddy and others could not love her, so is very possible she had all 15 SX.

You are referring to Robert Courtney. He was only able to dilute the medications he made through compounding. Pre-made pharmaceuticals are all but exempt from tampering. Now the labels on your rx bottles often have a very precise description of the pill that should be in the bottle. For example, my daughter's azithromycin states on the bottle the mfg is Wockhardt. On the lower right hand side of the label is the pill description as follows "white, oval, W961." Tampering with this medication would affect the markings on the pill such that it would not match the labeling on the bottle. It is always a good idea to be very cautious with rx meds. If they look different or you have a different result than what you expected or have had in the past, then call the pharmacy. If it is a different brand than you have had previously, and you are reacting differently it could be as simple as a reaction to one of the inert ingredients. Only the active ingredients are regulated to be equivalent (+/- 5%) to the brand. However, as evidenced with the recent Ranbaxy fraudulent drug alerts, it never hurts to talk to your pharmacist when you are not responding as you think you should be.

Pandas Network is a good place to start to find a doctor in your area. Here is the form you fill out for them to get back to you on a doc in your area: http://www.pandasresourcenetwork.org/about-p-a-n-d-a-s/find-a-doctor/. My daughter's ASO and Anti-dnase have never risen during or after a confirmed strep throat infection. The ASO and anti-dnase titers are a measure of how many antibodies for fighting strep that my daughter has. Her immunologist states that no rise in titers during/after infection indicates that her body has an immune issue since it is not creating antibodies to fight off the infection. I will see if I can find an article for you about this. In my daughter's case, an immune issue was confirmed by a blood test for her IgG, IgA, Igm, and IgE. However, her immunologist also stated since she had very low titers (antibodies) to strep, strep antibodies were not her trigger into PANDAS. Upon digging further, it appears my kiddo is what seems to be commonly called a "viral kid". She has high to very high antibody titers to rubella, mumps, rubeola, polio, EBV, HHV-6, and the doc forgot to order her coxsackie titers. She has way too many antibodies running around in her system with nothing to attack. Bored antibodies are not a good thing in her case because they found something to attack (basal ganglia.) We are trying to get some of these down to a reasonable level and see how kiddo is doing then. This is usually an up and down journey to recovery. Good luck.

Unless you are a research guru on these two subjects, these will likely have at least a little information you did not know already . Of course, you don't need to take the exams unless you are in the profession . I do not think you have to be registered on the site to view these, but if you do, let me know and maybe I can copy the whole thing here. IVIG: http://www.powerpak.com/course/content/109009 Probiotics: http://www.powerpak.com/course/content/108027 There was a better probiotic course but apparently you must be logged in for that one, so here is a bit of what I found interesting in it: "The following examples cited by ConsumerLab.com highlight the information that pharmacists must consider when recommending an appropriate probiotic product.40 Example 1 – Align® claimed to contain 1 billion live bacteria at the time of manufacture and to provide an effective level of organisms until the “best by” date on the label. The ConsumerLab.com test showed the product to contain 530 million viable organisms. Clinical studies have shown that the bacteria contained in Align®, B infantis 35624, can reduce the symptoms of IBS at a dose of 100 million. Since the ConsumerLab.com test exceeded the necessary number of organisms, the claim of an effective level of probiotic was upheld. However, keep in mind that the manufacturer of Align® cannot advertise the effectiveness of this dose for the treatment of IBS because it would constitute a disease-related claim. This type of claim is illegal under the DSHEA legislation, even when it is supported by clinical studies. Example 2 – The Culturelle® label claims to provide 10 billion organisms per capsule through the “best use” date. ConsumerLab.com’s test found 5.8 billion CFUs per Culturelle® capsule. The majority of clinical studies conducted with the probiotic ingredient in Culturelle®, LGG, used a quantity of 10 to 20 billion CFUs/day. This may be an effective dose of Culturelle® for certain conditions, but this can be neither verified nor refuted from these test results. Clinical studies have not investigated the effectiveness of LGG at the 5.8 billion CFU dose. Example 3 – Udo’s Choice™ Adult Probiotic, a combination of 8 organisms, states on the front label that it contains 12 billion cells per capsule. The back panel states, in a footnote, that this is the quantity per capsule at the time of manufacture. The Supplement Facts panel states that the product contains 6 billion cells per gram until reaching the “best before” date. However, each capsule contains only 0.37 grams, or 2.2 billion cells per capsule, approximately 20% of the quantity stated on the front of the label. In ConsumerLab.com testing, the product contained 4.9 billion cells per capsule. A review of the product’s Web site revealed no peer-reviewed publications or trials using this product by which health care professionals or consumers could determine an effective dose. No conclusions can be made about the effectiveness of this product because there is no available clinical evidence to support its use. The wording of the available dose on the label is also of concern since the small print guarantees a dose of only 2.2 billion CFUs compared with the stated 12 billion on the front of the bottle. Sidebar 1: Web sites That Provide Quality Information About Probiotics American Gastroenterologic Association – www.gastro.org ConsumerLab.com – www.ConsumerLab.comBy subscription Council for Agricultural Science and Technology – www.cast-science.org/publications/ Food and Agriculture Organization of the United Nations (FAO) – www.fao.org/ag/agn/agns/micro_probiotics_en.asp International Scientific Association for Probiotics and Prebiotics – www.isapp.net Natural Medicines Comprehensive Database – http://naturaldatabase.therapeuticresearch.comBy subscription usprobiotics.org: California Dairy Research Foundation and Dairy & Food Culture Technologies – www.usprobiotics.org" http://www.powerpak.com/course/content/107966 ETA: Just a heads up............while the above sites may be good sites about probiotics, it appears most of them require a paid membership. I have not checked them all, but the three I have checked all require paid membership to read what they offer.

We use Lemon Balm by Nature's Way 500mg capsules. I give one in the morning and one at bedtime. My kiddos two hardest times of the day getting through the morning and nightmares at night, and it is helping for both of those. I also take it with two generic excedrin when I get a tension headache, and it has helped me with those a lot as well. My kiddo will not take liquids either unless there is no other option.

For the prescription stuff, twice a year there is a program called "take it back" that most pharmacies participate in. Call you your pharmacy and see if they will ever take back stuff so it can be safely disposed of.

My daughter is probably considered low-moderate anxiety. She was on a low dose of zoloft. I took her off that when we started having great successs with lemon balm. The zoloft never really seemed to help with her anxiety anyway.

I would ask whoever is helping you with the lyme/bart issue about it. There are many ways to treat parasites without rx meds, but guidance is always nice.

That is funny. Is the book helping you understand the 23andme results any? If so, I will be getting it soon as kiddos results should be in in around 6 weeks.

Check with an independent pharmacy in your area. They will be more willing to do what has to be done to get a different drug from their wholesaler. When I did this, there was a certain code to put in when ordering so that the wholesaler did not automatically sub with the cheapest generic out there. CVS can likely do this as well, but chains are notoriously less flexible when it comes to meeting individual needs (IMO).

Reye syndrome is rare according to literature. Unfortunately, it is also fatal in 20-40% of the cases. Tylenol has begun to be linked to autism and asthma increase: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3261751/ http://www.ncbi.nlm.nih.gov/pubmed/20030462 The current warnings about aspirin are this: do not use it when a child has symptoms of chicken pox or flu. Here is a fairly lengthy article on aspirin's role in reye syndrome: http://www.tga.gov.au/pdf/archive/review-aspirin-reyes-syndrome-0404.pdf

Depending on the age of the child, it may not be safe to use aspirin of any kind due to Reye syndrome. http://www.ncbi.nlm.nih.gov/pubmed/17523700

If your child has a primary immune deficiency, encephalitis, or some other similar recognized condition, then it may already be covered for you, especially if the doc is willing to go to bat for you. Have you had the IgG, IgM, IgE, and IgA levels tested? If not, that would be a good start since many PANDAS/PANS kids have immune deficiencies. PANDAS/PANS is still not a "medically" recognized condition, it does not have an ICD-9 code and it is not in the DSM. IMO, It will not be commonly covered until these things happen. Even after these things happen, it will have to be proven to the FDA that IVIG is an efficacious treatment. Then, and likely only then, it will become commonly paid for. I have no idea how much longer until it becomes a recognized disorder/disease. Some people have been able to appeal a rejection (sometimes it takes more than one appeal) and get it covered, but I do not know under what diagnosis they are getting it covered. Hopefully they will chime in here. Good luck.

Great, and thanks! I know we have an single A1298C mutation and I will have the 23andme results in probably 6 more weeks. Now, when you find the URL for genetics 101 for dummies (ie "complete" understanding 23andme test results) please let me know LOL !!!

My kiddo is 62 lbs and her immuno just bumped her up to 375mg every day (from 125mg every day). The immuno said he may want to bump her up to 500mg, but I will have to look that up as it seems like a pretty high dose for her weight. She also takes cephalexin 500mg every other day. She is no where near where she needs to be right now, but a year ago she was on zithromax 250mg every day and almost reached 95%. Then she was changed to something else, and changed again and again. We went back to zithromax in Feb. but at a pretty low dose, started at 125mg every other day.

Kefir has this strain as well. Milk kefir has less of it than water kefir. You may have to go with a calcium supplement. I am intolerant of milk, so I take a calcium supplement.