Mayzoo

Regular use of h2 antaganonist and/or protein pump inhibitors also reduces the bodies ability to fight off strep since they change the acidity of the stomach.

Celexa has not caused me any weight gain or sugar cravings. I have been on it (again) for probably three years.

Our kiddo seems to have a lot of viral load, and a compromised immune system. We are waiting to see what she is like after we get some of the viral titers (antibodies) under control. If she is still struggling then, we will need to decide if we believe the risks of IVIG are worth to potential benefits. Each of us must decide these things on our own, and we will never know if we made the right choices. What works for one kid may not work for another. I cannot discover what the outcome would be of BOTH early IVIG and delayed IVIG. We just have to do our best at each decision milestone and accept the outcome we end up with.

My kiddo's vocal tic is much, much worse during a fever, and her energy level plummets. Any fever is enough to cause chaos in our household.

We have always been told kiddos look normal, even by the ENT who evaluated her for the T & A. When they were removed, they were hypotrophic (small/shrunken), pitted, and were indicative of chronic infection. They also cultured actinomyces bacteria, which no doc has addressed yet. I have an article on how to treat for this, but her immuno has not yet acted on it with all the other stuff going on.

We use Healthy Origins 30 BU. Here is a link: http://www.amazon.com/gp/product/B00309ZDS2/ref=twister_B00309S4C4?ie=UTF8&psc=1 It is does not need refrigeration, and it is able to pass through to the intestines for absorption. It has 8 strains and 30BU.

We use probiotics, prebiotics and bio-enhanced curcumin to control yeast. So far, it seems to working since her yeast markers are pretty good.

    It seems to be very accurate in my kiddos case. They did cover MTHFR variations. Kiddo has one BUT only one . I would say it was worth it. There is a great documentary about the pluses and minuses of doing genetic testing, and it covers 23andme pretty well. I can find the link if you have not seen it yet. I think it was worth it medially, and it has a lot of simply interesting information as well. I do not regret getting it, but then again, kiddo showed no serious disease traits either *whew*.

When we did the 23andme test, we did so as anonymously as possible. It was paid for by a distant family member, it was shipped to a friends address, and I registered it under an anonymous name. If an insurance company wants the information, of course they can get it if they try hard enough, but I wanted to make it as difficult as possible for now since it is all predictions. As LLM stated, we will have to disclose any known risks or known conditions when the time comes. I see no reason to make my kiddos life any more difficult than necessary. She already would never qualify for life insurance anyway, but I see no reason to make getting medical any harder than it already is.

Azith and biaxin are both macrolides. It would need to be a very special situation to give them together. What does the doc say?

The inflammation from the antibodies attacking the basal ganglia is what causes most the symptoms. Steroids both drastically reduce inflammation, and they also suppress your own bodies immune system (immunosuppresant). This will reduce the amount of antibodies available to attack the basal ganglia. So, you have fewer antibodies causing the inflammation, AND a drastic reduction in inflammation already present. Both lead to a tremendous reduction in symptoms sometimes within hours, sometimes within days. I am glad it was the within hours for you .

I understood that a few of these specialists would do phone consults or skpe appts when things got really bad. Is that correct? I know our immuno would do one if a need really arose, but we are already established now so that may make a difference.

We discovered the super high rubella titers (as well as several other high titers too) on 5-28-2013. She became PANDAS symptomatic 9-2011. She still has emotional lability and a vocal tic. Right now we are drawing her blood with every doc visit, so every two months. So far, there does not appear to be a toxic load with her meds yet, but several of them are hard on both the liver and kidneys. I added milk thistle in hopes to help her liver out since she is on zithromax, keflex, amantadine and numerous supps as well. The last blood draw was four days ago, so I should know more soon.

I was ripped apart inside at my friend's son's wedding. My only child may never reach a psychological/maturity level of being capable of marriage/parenthood. It depressed me for quite a while, and still does when I think of it. All I can do is my best to prep her for both scenarios as best as I can. I still mourn the things she is not capable of doing or enjoying because of one of her dxs, but I try to limit that as much as I can. I hope this time of grief passes for you and a sunny spot enters soon!

Not quite the same, but my kiddo is on amantadine for the at least the next 90 days. She is on it because her rubella titers are 147 with positive being 9. I would say get his coxsackie titers redrawn if you are worried. That way you at least know if it is necessary or not. How high were they? How are his symptoms, if he had any? I can relate with worrying about the tiny part, since kiddo is eleven now and just 62lbs. When she was ten she was 50lbs, so she has gained some weight since abx therapy has started for her.

We have a pool, and I have been using 1/2 white vinegar mixed with 1/2 rubbing alcohol in kiddos ears for years after we get out of the pool. No ear aches since starting this. It works as an anti-fungal by altering the PH to an inhospitable level for fungus. I will try this mixture next time kiddo has an ear ache though. She gets them in the winter sometimes.

You are welcome . I live in a tiny town over 20 minutes from a small town LOL. I shop online a lot to get the variety of what I want since a truly decent town is over 45 minutes from me. It has become second nature now for me to check amazon and ebay. Hope it helps someone .

I do not know how much it is at your local store, but you can get almost anything on amazon now days. Here is the search for manuka honey: http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=manuka%20honey

High ammonia levels can also be triggered by a CBS mutation. Since the body does not eliminate the ammonia with certain CBS mutation, eating animal protein can result in high ammonia levels. Ammonia is generated when the body breaks down animal proteins.

Thank you very much for sharing this! I will call my kiddos insurance (BCBS also but probably a different state) to if they will cover any of it as well. I like to know in advance how much I am spending on a test prior to committing to it; if it is a non-critical test, I do not like surprises. Also we have already had over $5000.00 in lab tests run since April already that were critical tests and I am unsure how much my part is on those yet since the insurance requested records to prove they were medically necessary. Our immuno shows zero doubt that she is a clear cut PANDAS case, and he is treating her as such without any reservations, so the test so far, is unnecessary and he is leaving it up to us to do or not do as we wish. He is offering IVIG based on her dx of PANDAS, and now she has the added dx of Primary Immunodeficiency, so IVIG would likely be covered up to some extent. Thanks again.

Yucca root pills help reduce ammonia levels from what I have read. We have them in the cabinet, but have not started them yet. There is much research on farm animals for this, but little research on people. https://www.google.com/#output=search&sclient=psy-ab&q=yucca+ammonia+reduction+%2B+human&oq=yucca+ammonia+reduction+%2B+human&gs_l=serp.3..33i21.3676.5285.0.5503.8.8.0.0.0.0.256.1516.0j2j5.7.0...0.0...1c.1.17.psy-ab.mglJQJcU69o&pbx=1&bav=on.2,or.r_qf.&fp=ac88891b1413d7dc&biw=1958&bih=870 Yucca is being used fairly frequently by those who are finding they have CBS mutations. There are some concerns about too much yucca leading to hypoglycemia.

We are not going to do it any time soon for several reasons: 1. Kiddo has a very clear presentation. She had confirmed strep for almost 60 days at diagnosis, and she had all 15 of the symptoms of PANDAS at the time of diagnosis. She has responded within 20 days to abx therapy, almost instantly to IBU, and when we had to, within days to steroids. 2. The cost of $1000.00 is out of our reach right now since we have sooooo many other more important tests we are still running, supplements we are adding on still based her latest lab results and 23andme results, and her meds are still in flux since we are still finding more co-infections or high contributing antibodies. 3. I have requested twice from the lab the CPT codes and unit values they are billing under so I can find out if kiddos insurance will cover any of it and if so, how much. They have yet to even acknowledge I have contacted them, let alone supplied the information I need to decide if we can afford the test.

Our immunologist said no more vaccines for our kiddo based on this dx. If you have a PANDAS doc, ask them what they want for your child's future, and if they say no more vaccines, get it in writing so other doc's have less room to argue with you. If they still argue with you about, then yes, get another pedi. They are there to advise you, not to make major medical choices for your child. Another option is to get his titers tested first. My kiddos titers are insanely high for most the stuff they vaccinated for when she was little. She has no need to be vaccinated for anything even 7 years after her last vaccine. She had only one MMR shot when she was 15mo and all her titers for that are very high. Her Rubella titer is 147 and the high end reference to show immunity is 9 . We are now having to treat to lower her Rubella antibodies.

But he responds quite well to steroid treatment, if I recall correctly? That would be one indicator that his condition is in fact autoimmune.

We have not done this test yet. For a thousand dollars, we have other priorities right now. BUT, would the antibodies be raised in an immune compromised kiddo? I am asking for my kiddo case, and maybe T.Annas. My kiddos strep antibodies are never raised, and are actually very low. Her IgG and IgA are below normal. She qualifies for IVIG, but we have not pursued it yet. We want to get all the other stuff under control and see what kiddo is like then. Then we will decide if we need to pursue it or not.