Mayzoo

Tinytreasures provided this information. Call you insurance company and ask them how much they cover for each of these cpt codes, whatever they do not reimburse, you are responsible for. That way you are not guessing. 83520 - 4 times 88230 - 1 time 86352 - 1 time

Thanks, I will look into this.

Not much help here, but kiddos vitamin d is not deficient or even borderline (57.2 ref range 30-100), and her Calcitriol is actually a bit high. Hope this helps you work out a theory .

I am still tinkering with methyl groups. I just had to completely stop them again for a while. Kiddo was on 100mcg of methylfolate and 1250mcg of hydroxy b-12 patches every day. She was getting the "upsets" anywhere from a few minutes a day to a few hours every day. The "upsets" stopped within 48 hours of stopping the methyls and they have been gone now for 5 straight days. The "upsets" are when she starts crying for no apparent reason, her vocal tic comes on strong, she becomes very frustrated and she appears to be in pain (physical or emotional) of some kind. She clings to me and looks up at me as if begging me to make to make them stop. I will try the methyls again some other time, but right now we are enjoying the peace . I left kiddo on taurine and Enhansa despite her being hetero on one CBS. She does well on them, and her neurotransmitter test showed she was low on taurine. Hetero does not mean you need to completely stop something if they are already doing well on it. They have one working gene. It does means to watch and be aware of potential issues.

This is the one we had done. You ask your doctor to get a kit from them (if they do not already have one). Then the doc gives you the kit (urine test) and you mail in to them. I think it was $255.00, but we did so many I may have the prices mixed up. http://www.pharmasan.com/testing.php?CatID=1&CatName=Neurotransmitters The test we did gave parameters for: GABA Glutamate Glycine Serotonin Norepinephrine Dopamine Taurine PEA Histamine Epinephrine

Kiddos OAT shows her Serotonin at .78 with a range of >7.7 so it does not range down to "low." Her neuro test showed her serotonin to be about mid range. I think both the OAT and the neurotrans test recommended NAC, but kiddo has a CBS mutation so we are holding off on the NAC for now. I tried it myself for another reason, and a low dose caused me to become a bit aggressive/argumentative, but I have not been gene tested either. The CO-Q-10 was recommended on the OAT, but I do not believe it was recommended on the neurortrans test.

Many similarities in our kiddos lab work. Here are some of my kiddos and what we are doing: OATS Yeast High Arabinose...added Sacc B and kefir to her diet. A few slightly high bacteria markers. Added Kefir. Vitamins: Low vitamin C. Added 500mg Vitamin C in evening, and vit C/echinacea/zinc chews in the am Low B2. Added Co-Q-10, 50mg B-2, and a super B vitamin. Neurotransmitter test: High: GABA Glutamate Dopamine Norepinephrine Low: Taurine PEA Added Taurine 375mg, added 5-HTP in hopes to lower Norepinephrine, added L-Phenylalamine 250mg to raise PEA. We are going kinda slow, and I am adding the Phenylalamine tomorrow. It is the last one to add based on test results, and all appears to be going pretty well so far. Our Immuno said the GABA/Glutamate ratio you are dealing with is far more common. He said our kiddo is "only one of a few" of his patients whose ratio is about right (even though the numbers are too high). It has not apparently been long enough to really gauge progress for our kiddo on the neurotransmitters. Apparently they want you to treat for about 3-4 months then retest for progress.

I have come to always retest after abx for strep. My kiddo had it Jan 2012 for almost 60 days before it finally cleared. Ten days of amox, Ten days of augmentin, and 40 days of HD zithromax before it finally resolved. It seems with our kiddos, we cannot assume it cleared. Glad to hear you got your DS into the hospital. Good luck.

Does the MV you use have folic acid in it? If not, what do you use? Thanks

I ordered the 2X and will half the capsules once a day for a while. The goal of 15 caps a day of the regular virastop seems extreme to me, especially for those of us with "viral kids". Kiddo responds negatively to so many things right now, I am definitely going to go s l o w l y. No worries about hijacking. I encourage all comments of any kind, even if it is another type of antiviral that folks found helpful for them. We are also going to be slowly adding l-lysine in hopes to get her slowly feeling better. She is so fatigued lately......she used to spend all day outside chasing bugs, swimming, digging in the dirt etc...... Now she only has the energy to flip through Netflix on TV or read a book on the couch .

Has anyone tried this for their kiddos with high viral antibodies? Any input? My child has high viral antibodies for: Rubella Coxsackie b4, b6, A7, A9, A16, A24 EBV HHV-6 She is currently on Amantadine since her rubella are the highest.

Personally, I want to get most the infections and viral titers to within normal or near normal before we do IVIG. Once we get there, I can assess what my child's new normal would be, then I will be proceeding with IVIG or not at that time. We should be able to get it covered since she is considered immune compromised as well.

I did not have the time last night to research this one. If it is the drinkable Danactive yogurt, here is what it has: Friendly bacteriaDanActive contains 3 different cultures: Streptococcus thermophilus, Lactobacillus bulgaricus, and Lactobacillus casei, a probiotic culture that contributes to healthy gut flora. http://www.danone.ca/en/products/danactive

Here is some more info on the diff between yogurt and kefir: "The beneficial bacteria found in yogurt help keep the digestive tract clean and provide food for the friendly bacteria found in a healthy gut. They pass through the digestive tract and are called "transient bacteria." The bacteria in kefir, on the other hand, can actually colonize the intestinal tract. Kefir also contains a lot larger range of bacteria, as well as yeasts. So while yogurt may contain a handful of different strains of bacteria, kefir may contain many more than that." http://www.culturesforhealth.com/difference-between-yogurt-kefir

Kefir content varies from grains to grains and depending on if you are using milk or water kefir grains. My daughter does quite well on milk kefir several times a week. She also takes one Healthy Origins 30BU 8 strain probiotic, 2 Inulin prebiotic caps and a Sacc B capsule a day. Here is a general guideline of commonly available bacteria/yeast found in milk kefir: 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 Streptococcus thermophilus Yeasts Chamaerops humilis Kazachstania unispora Kazachstania exigua Kazachstania exigua Kluyveromyces siamensis Kluyveromyces lactis Kluyveromyces marxianus Pseudomonas Pseudomonas fluorescens Pseudomonas putida Saccharomyces cerevisiae Saccharomyces martiniae Saccharomyces unisporus http://www.culturesforhealth.com/milk-kefir-grains-composition-bacteria-yeast

Well, we just had our appt, and the doc felt she would not benefit from oral IgG. When he thought she might benefit, I guess he did not know the condition of her gut, and that we know her gut is not too bad off, he feels IVIG is best. He feels oral IgG is mainly for gut issues. Back to weighing the pros and cons of IVIG.

Our immuno has stated we can use either oral or IV IG treatment. Has anyone tried the oral route and does anyone have any comments about the oral option?

Augmentin would likely replace penicillin, not just be added in with the other two. Tics can come and go at almost any time. Such variances it is mind boggling to me.

Is there a reason you want to stop abx to treat viruses? We are treating both with abx and anti-virals right now and likely will be for a while. If you need to stop them, I would wean off in case they are helping in ways you are unaware of.

I am not much help, but in 2004 I was in a car accident. I was driven about 45miles to the closest ER at that time (yes, I live in the boondocks ). At that time it was $650.00 for the trip. Around here, the charge is based on level of emergency and distance traveled. We did not have medical insurance and I had a head injury, so it never occurred to me to try to get it covered by our auto insurance PIP.

My daughter's rubella titers were 146 with an immune level of above 9. Her immuno is worried about this antibody level above all others. A few facts: 1. She has had only one MMR shot at 12 months old. She had a negative reaction including very high fever for 2-3 days. I never re-vaccinated her. 2. My rubella titer during pregnancy was 169 with an immune being >9.9, so I was not vaccinated during pregnancy. Questions: Anyone else had their kiddos rubella titer tested? Did any of the moms here have their rubella titers tested during pregnancy? If yes to either, what were the results? Thanks everyone!! So many pieces to the puzzle.

Thanks everyone! My daughter has a loud holler as her vocal tic. It is not constant, but it comes and goes with stress, fatigue, fever, etc..... She calls it the upsets, because often time, she becomes very upset at the same time, sometimes simply because the vocal tic upsets her. She has also lately started an odd breathing style tic; she inhales and exhales as if she is hyperventilating when she is not (but I worry she will cause hyperventilation). I am going to print out some articles on acyclovir and coxsackie + acyclovir and rubella. The immuno seems to be more worried about her rubella titers (146 with high being >9) than her coxsackie titers so he has her on amantadine. I am worried about both, and amantadine does not have an indication for coxsackie, but acyclovir does work on both from what I can tell.

Most the people I have spoken with who do not have special needs or chronically ill kiddos are under the impression that those conditions brings extended families together more......................boy are they wrong!!!!

I believe you need a b12 with methlyfolate as they work synergistically. From what I have read, using one or other alone usually causes an imbalance of the non-supplemented item, and a lower absorption rate of the one you are giving.

In case you are not aware, 3mg is 3000mcg. I agree with the dose reduction for now and see what happens. Have you done a complete genome via say 23andme or just the MTHFRs? There are other polymorphisms that may affect how you approach the MTHFR mutation. My daughter is currently taking 100mcg of methyfolate and 1250mcg of hydroxycobalamin (via a patch) every day.