Mayzoo

I have read some folks do not do well on Tindamax for one of several reasons. Usually, it seems, the kiddos have trouble once the tindamax starts breaking up cysts. You may try searching the forum for the key word "Tindamax". If you need help doing that, let me know.

Small steps in the right direction are enough to most of going . Congrats!! My kiddo slept through the night last night too (rare these days). PARTAAAYYYYY .

Dilated for us usually means active flare in progress, and of course behaviour is in the tank when dilated too. She has an active flare any time she is exposed to almost anything. What are his triggers? Does he run a fever when ill? Check for a red throat. Check for a fever. Is he normally non-verbal, or just recently? My kiddos speech is definitely affected by her flares. Has he had a growth spurt lately that may put him in a new dosage category for his meds?

My kiddos was a 1.56 with a positive of >0.99. Her immuno was not too worried about it right now because she has other much more out of whack stuff. He may worry about it when he gets the other stuff under better control. He is kinda taking care of most critical first.

Here are some docs in your state. Psychologists cannot write meds to my knowledge, but I will leave them on the list just in case you need their information later. Christopher Jenny, PA C Physicians Assistant 704-847-4000 Charlotte, NCDr. Aureen Pinto-Wagner, Ph.D. Psychologist 919-371-8230 Cart, NCDee Dee Russell Psychologist 704-552-1116 Cornelius, NCDr. Marla Deibler, PsyD Clinical Psychologist 856- 220-9672 Princeton, NCDr. Sherif Taha Allergist and Pediatrician 252-756-1333 Greenville, NC

We are trying to cover all our bases before we decide to proceed with IVIG. Unless IVIG can cure HHV-6, coxsackie, EBV, Ruebella, etc, why would I spend thousands of dollars on it until we had her other conditions under control? So far as I know, IVIG is not listed as a treatment for her other issues. To me, it makes sense to resolve as many issues as possible prior to trying to "reset" or boost the immune system. Might as well give the procedure as much chance at success as possible. I think the rational to looking for more conditions is many of the PANDAS kids are immune compromised, so the likelihood of another condition being present is pretty high. If you are not seeing success with any normally successful treatment modality, or if a successful treatment protocol suddenly regresses for long period of time, then IMO should consider that maybe more is going inside your kiddo than what you are of. Our kiddo is lab confirmed immune compromised, so if we can get her in a good place without IVIG then we will, otherwise she may need regular infusions anyway.

Okay, I found this....http://www.snpedia.com/index.php?search=PNKD&title=Special%3ASearch Of the four listed on that site, only Rs2382817 shows up on the 23andme raw data. My kiddo is -/- for that one.

How would I find this gene amidst all the results I have on kiddo? Thanks .

Thanks everyone for all the input!! I am still digesting all this. For now, I am going to keep her on what she takes.....Alive multi w/o iron. I was going to add a super b complex, but I realized the Alive already has high doses of some of the Bs. So, for now, we will stick with it through all these other changes. With her dose, she is getting 264mg of folic acid, but kiddo is only heterozygous on the A1298C. http://www.amazon.com/Alive-Potency-Added-Multivitamin-tablets/dp/B0009F3ROC/ref=sr_1_1?ie=UTF8&qid=1371395850&sr=8-1&keywords=alive+multivitamin

LLM--She has the MTHFR A1298C +/- and two heterozygous COMT variations (COMT V158M, and COMT H62H) . Her genetic genie report says she needs to alternate between hydroxy, adenosyl and/or cyano b-12s. It says methyl b-12 is better for those who are COMT -/-. I already have cyano in her MV that she takes (low dose), so I am adding in the high dose hydroxy patches. My head is still spinning from all this research and learning, AND my spell checker went nuts with that above paragraph LOL.

Thank you very much, I found a bit of that in the wee hours of the morning. Are you supplementing with BH4, or is anyone? I have not found it yet, but I have just begun my searching and researching.

Besides Yasko, does any other source recommend similar treatments for DNA mutations? I am researching as well, but wanted to see if anyone else had already done this research. Thanks.

So, is the folic acid in that okay for those w/ MTHFR mutations? I gather that non-methylfolate supps are simply passed through the the system unabsorbed, but I wanted to see what others thought as well.

I will likely need to use either the cream nicklemama mentioned for b-12 or a patch I found on amazon since kiddo needs hydroxy b-12. Only 1 - 2% of b-12 is absorbed when taken sub-lingually or orally. Bacterial overgrowth in the gut reduces absorption as well, BUT they have very high dose sub-linguals and orals now, so that may counter act the previous two complications. I probably am going to go with some form of transdermal, but I am not sure yet......... I was refering more to a b-complex, something with many b's in it in one pill.

What brand do you use? I would like one that is absorbed well, but not sure which brands fit that description right now. Thanks.

Our results only took just over 3 weeks and I was surprised as well. Sorry no insight on your results. They are different than ours and I am still studying up on ours .

Looks like negative for current lyme infection and mycoplamsa infection, but it appears to show a past mycoplasma infection. I am not a lap pro, so hopefully someone else will weigh in on it soon.

Antibiotics are used to prevent lyme disease. They should be administered within 48-72 hours. Depending on the age of the child, Doxycycline or Amoxycillin seem to be the abx of choice. Call your pedi or primary care giver immediately if you think you can get them to prescribe them.

My kiddo was on it for about 3-4 months. She was around 50lbs, and took 50mg twice a day, then it got bumped to 75mg twice a day. It can stain teeth and they will need to be cleaned by a dentist. If your kiddo starts on it, check with their dentist to see if there is anything you can do to minimize the staining of their adult teeth.

These are the names off the Pandas Network site, I do not know how close Edgewater is to you, but I hope close enough for you to get to them: *Dr. Elizabeth Latimer (Leading PANDAS Physician) Neurologist 301-530-9200 Bethesda, MD*Dr. Azim Baig Pediatrician 410-956-6303 Edgewater, MD

Kiddo takes a tablespoon of the extra virgin coconut oil every day. I started with the capsules, but you have to give 15 capsules to equal a tablespoon of the oil. Now kiddo loves to just have two tablespoons of peanut butter mixed in with her coconut oil and she just eats it out of the bowl. Her daddy tried it and says it is yummy . I cannot say I have noticed any difference, but I keep it up since she loves it so much.

I can only answer one or two questions. I only have one kiddo, and she has been getting a new dx almost yearly since she was 2. She is also restricted on sports she can do. She is allowed to swim so we put up a pool every year for her to swim, we try to go to the nearest swim park, and we go to the public wave pool. We just bought a small boat so we can fish and swim in one of the local lakes. We also do outdoor activities such as croquet, Frisbee, and she is "helping" me train one of our dogs. You cannot easily force a teenager to take her meds. Has she talked to the doc, a nurse or another person who has these conditions who can convince her of the importance of taking her meds? Can she google her conditions on her own and read up on them so she can feel like she is making an informed decision (hopefully to take the meds!)? Can she get a pen pal, maybe even from here, that could help her relate to how much it stinks to have to take meds, but also help her realize it is not optional? I cope by coming here, going to another forum I visit, talking to my hubby about all this, talking to a good friend of mine, taking walks around our land, and fitting in pleasure reading when I can. I also spend a lot of time reminding myself of how far my kiddo has come in her life rather than focusing only on her current struggles. She has conquered several problems and overcome several serious issues. Valerian and Lemon Balm are also key to my coping. Good luck and I hope it gets better soon for you.

I don't see how these type of insurances can get specific patient records written permission. So even though life insurance is not prohibited from considering genetic data. Wouldn't it be illegal for them to obtain specific patient records? Might be worth more money filing a law suit if that happened. Also wouldn't disability insurance and long-term care insurance be an oxymoron? I would think that identifying genetic problems actually strengthen any arguments for. I don't see a problem with having genetic data available for research as long as there is no whom it cam from attached to it. My concerns are not so much geared towards today's laws, my concerns are for what I foresee the laws being in 10 + years. Right now, yes they have to have our permission to get our results. In the future, I do not believe they will need our permission.

I believe the information is very important for parents to be armed with when our kids are "medically complicated". I also believe we parents need to do everything we can to protect our kids information for as long as we can. At this time, the only way to trace my daughter's test kit back to my home is through the IP address of checking on the results. Then they will not be positive who in my house the results are for. I read part of the law last night, and saw the exclusions then. Those are not really a concern to *me* on a personal level at this time since I already know my child will never qualify for life insurance, and she will likely be deemed "disabled" as soon as she turns 18. I can see how others would be very concerned about those listed exclusions. I am highly cynical in that I believe, in the next 10-15 years, under the guise of making catching criminals or terrorists sooooo much easier, all genetic testing companies will be mandated to hand all their results over to the government. I also believe that in my child's lifetime we will all be required to submit to genetic testing to determine our rates. Many will say these things can never happen in Amercia, but then again, many have said there is no way Americans will ever be forced to purchase medical insurance against their will or be fined for not doing so. Times and laws are changing, and we the people do not have a vote in many of these changes.

A marriage does not merge companies together, it only merges people's lives together. Google does not own the information unless 23andme sells it to them.