Mayzoo
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Posts posted by Mayzoo
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Here is a vegetarian Omega 3 softgel 100mg http://www.amazon.com/dp/B001EHLSSG
Here is a website that details vegetarian food sources for omega 3 ie flax seed crushed and added to foods: http://vegetariankids.co.uk/easy-ways-to-add-omega-3-for-vegetarian-children/
This says it is a vegetarian gummy, but maybe they mean just the source of the omega 3 is vegetarian: http://www.supersup.com/hero-nutritionals-yummi-bears-vegetarian-fish-free-omega-gummy-vitamins-for-children-natural-fruit-90-gummy-bears-613098683828
And we use Healthy origins Probiotic with no issues: http://www.amazon.com/Healthy-Origins-Probiotic-Vegetarian-Multi-Pack/dp/B003OD3XYA/ref=sr_1_3?ie=UTF8&qid=1369605346&sr=8-3&keywords=health+origins+probiotic
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If the blood work was processed at a Labcorp, you may be able to get the test results online. I would imagine Quest offers the same thing, but I am not positive. Some states allow the results to be released directly to the patient and some do not.
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"Get a grip" not the most tactful way of putting it...
:angry: OK, I know you didn't mean it. The OCD IS the problem, that's the reason I'm supposed to be having all this stuff done. Believe me, I've been through CBT/ERP techniques until I want to scream, and if they made the slightest bit of difference, I wouldn't be stuck here messing about with hypothetical infections. Catch ********ing 22... I was joking just now that my OCD picks these things on purpose to prevent me doing anything about it, but quite seriously, it's beginning to scare me how much it behaves as if it had a mind of its own
edit: I'm in England so Rothman program no good to me, thanks anyway though. Sorry for stroppiness of posting. That tends to happen if I talk about my OCD too much...
That apart, can anyone answer the original question - i.e. as long as I can't take psychiatric drugs or have injections, is there any point in my seeing a neurologist, given that I'm already seeing this other doctor anyway?
I am sorry, I did not mean any offense by the wording. I hope you find some answers to help you.
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Not normal IMO. My kids doc filled out a special Olympics form (unrelated to her care) as part of an appt, then it was misplaced before I left, so they said if I mail them another one they will fill out and mail it back to me.
At 150 to just fill out the request, I would be very concerned how much they are going to charge to review the results when those come in.
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You know, I have not tried it for my son. However, I worry about pathogens like Prions. I have no idea if these types of products sufficinetly filter or if you can get prions from these products...??
I am gathering there is no safe way to raise IGG levels. I am hoping this is as safe or safer than IVIG. Of course, we will never know unless something goes wrong.
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Has anyone tried this as an alternative to IVIG if their kiddos IGG was low but not drastically low? My kiddo has low IgG and IgA, but they are not drastically low. I am looking for an alternative to IVIG and I found this.
Here is an article about bovine IGG supps: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1905285/
So, I am curious if anyone has tried this yet. I just bought 3 months worth and we will retest her IGG after that and see if it has made any difference.
http://www.seacoast.com/immune-advantage-450-mg/now-foods/90-caps/p7521
Supplement Facts
Immune Advantage 450 mg - 90 Caps APS %DVServing Size 1 Capsule
ImmunoLin (Immunoglobulin Concentrate from Bovine Serum) 450 mg*
Immunoglobulin G (IgG) 180 mg*
In addition, each capsule may typically provide the following naturally occurring nutrients:
Transferrins 40.5 mg*
Proline-rich polypeptides (Immunoregulators) 22.95 mg*
Immunoglobulin M (IgM) 20.25 mg*
Immunoglobulin A (IgA) 2.25 mg*
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I pay OOP for our PANDAS immunologist. We pay OOP and supposedly we will get reimbursed 60%. I have filed but have not been reimbursed or denied yet. We have had only two apps, but so far, we will continue to see him. He ordered a lot of tests we needed and he seems to get PANDAS. He is willing to treat with long term abx or IVIG, whichever we feel is best for kiddo.
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Like I said before, my OCD will not let me take psychiatric drugs of any kind. (Just reading about the amnesia thing had me twitching all over the place...) Little ********* that it is.
You may need to get even a small grip on your OCD. Have you tried ERP, CBT, or any kind of therapy? The main way a doctor is going to be able to help you is through numerous types of tests. I hear the Rothman program in SF is a great program that empowers people to begin to take control of their lives again. There are several threads on here about it and how it has helped lots of people. What I have read says the cost is reasonable and that there is a place to stay right across the street.
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Have you tried halcion or klonopin 30-45 min before a blood draw? Those both calm anxiety a lot, and the halcion has an amnesia effect on many people so the do not even remember the blood draw per say.
Emla is not a pain killer. It is a numbing cream that is applied to area 30 minutes previously and it numbs the area almost completely. It is a bit like lidocaine. We have only tried it once with kiddo, but it worked well for her.
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I just received my daughter's OAT test results today, and my brain is on medical leave for the moment. Soooo, I will review them again tomorrow and see if anything looks way off. At first glance, they appear to make sense based on what I see in her, but I cannot unequivocally reassure you that they are accurate.
I know the OATS test and that GI test are very commonly ordered for autistic patients by countless doctors. That does not make them reliable, however. Just widely used. Hair heavy metal analysis (if that is what he is wanting done) is also not uncommon. Our doc went with what is called a porphyrins test that is done with urine and analyzed in France (http://www.metametrix.com/test-menu/profiles/toxicants-and-detoxification/porphyrins-profile). If he is wanted heavy metal analysis, then you can ask him if he prefers one over the other and what are the pros and cons to both the hair type and the urine type. I read something about this on another forum, but cannot remember right now....I will see if I can find it. I do know most parents seem to prefer the urine test for porphyrins.
Something to think about, the GI track is responsible for about 75% of your immunity. If you are having immune issues, it certainly can't hurt (except in the wallet) to see what the tests say.
I can say, I really, really hope they are accurate since we spent almost 700.00 on all her urine tests
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Our surgeon felt there was no need to cultures kids tonsils. I made it very clear that need or not, I wanted it done. Then I made sure I told EVERYONE at the surgery center we went to that the tonsils were to be cultured and I reminded the doc when he came in right before surgery. He had them cultured. Maybe he would have cultured them anyway had I not been so insistent, but if he did not, then the opportunity would have never come again so I had no problem being insistent.
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Here is some information on the OATS test. We have run the test on our daughter, but have not received the results:
http://www.greatplainslaboratory.com/home/eng/full_oat.asp
Here is some information on the Microbial GI test:
http://www.metametrix.com/test-menu/profiles/gastrointestinal-function/gi-effects-microbial-ecology
The hair test, I would need to know which one to get a link for it. I imagine these are as accurate as blood tests since urine tests, and fecal tests have been around for a long time.
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For our daughter, they just cultured the tonsils and saw what grew. They said the adenoids were to small and just get sucked into the tube, so they could not culture those.
We did five days of zithromax before and after the surgery. It was not her prophy abx at the time. I have heard other folks say another abx would be better, but kiddo did pretty well on this. I guess every kid is different.
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Strep titers are a great first lab, but if they are negative, that does not mean you are not dealing with PANS. My daughter was a classic presentation with an active strep infection at the time of dx; however, her strep titers have always been super low. However, she responds beautifully to abx treatment, and regresses badly when a taper down is attempted. This simply means another antibody is the main trigger for this particular group of kids; hence, the PANS dx. Further digging has revealed my kiddo is, as her immunologist states, a very "complicated case." Naturally, nothing with her medical has ever been typical
.Sorry, ignore this comment for your thread. Somehow I got it on the wrong thread.
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Strep titers are a great first lab, but if they are negative, that does not mean you are not dealing with PANS. My daughter was a classic presentation with an active strep infection at the time of dx; however, her strep titers have always been super low. However, she responds beautifully to abx treatment, and regresses badly when a taper down is attempted. This simply means another antibody is the main trigger for this particular group of kids; hence, the PANS dx. Further digging has revealed my kiddo is, as her immunologist states, a very "complicated case." Naturally, nothing with her medical has ever been typical
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Strep titers are a great first lab, but if they are negative, that does not mean you are not dealing with PANS. My daughter was a classic presentation with an active strep infection at the time of dx; however, her strep titers have always been super low. However, she responds beautifully to abx treatment, and regresses badly when a taper down is attempted. This simply means another antibody is the main trigger for this particular group of kids; hence, the PANS dx. Further digging has revealed my kiddo is, as her immunologist states, a very "complicated case." Naturally, nothing with her medical has ever been typical
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The million dollar question with PANDA kids is this: Is their behaviour willful and within their control? If it is not within their control, punishment is a waste of time and energy IMO. Of course, some of the behaviours we see are willful and within their control, then behaviour modification/punishment is worth the effort.
Right now, my kiddo get very emotionally upset, stops moving and slowly builds up steam until she explodes and throws any object in her hand or that is nearby. I am not trying to stop the emotional upheavals (out of her control IMO), but I am trying to direct her to stomp her feet instead of throwing things (within her control IMO). If she stomps her feet instead of throwing stuff, then we will have a party about her handling her feelings more appropriately.
When you figure out 100% how to tell which it is, please let me
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As far as I can tell, any viral, tick borne or bacterial illnesses can be a trigger. Here are some of the most common:
Cocsackie
HHV-6
EBV
Flu
Strep
Mycoplasma
Lyme
Bartonella
Babesia (sp?)
Less common but possible:
Pneumonia
Bronchitis
Kiddos doc tested for these also, but I have not heard any actual accounts of them triggering:
Chlamydia pneumoniae
Cytomegalovirus
Herpes Simplex Virus
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Will these kids take a bath if you let them wear their swimsuit to do it? Maybe that changes the parameters?
Mine won't, but she will take her suit off in the pool LOL.
I suspect the answer to this puzzle will defy adult logic and it is strictly an "I don't know why, but it is" kinda answer. We have started the mantra of "it feels great to just get it over with" for those things that logic, reason, and all other methods of convincing fails. We make a huge deal about how good it feels to just get it over with, and then the next time we are faced with a resistant issue (baths, blood draws, etc), I remind her how great it felt to when she just got it over with.
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I am curious if anyone has tried any of these alternatives for IVIG:
- Bovine IgG capsules/powder (I know some have tried camal's milk)
- Bone marrow transplant (only if your kiddo has immunodeficiency of course)
If anyone has tried these, could you let me know how it went for you please? I am the same blood type as my kiddo, so I might be a suitable marrow donor, but of course we would need to do all the testing. I am just beginning my research, so I am not even sure if kiddo would qualify for a bone marrow transplant vs IVIG.
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I am curious if anyone has tried any of these alternatives for IVIG:
- Bovine IgG capsules/powder (I know some have tried camal's milk)
- Bone marrow transplant (only if your kiddo has immunodeficiency of course)
If anyone has tried these, could you let me know how it went for you please? I am the same blood type as my kiddo, so I might be a suitable marrow donor, but of course we would need to do all the testing.
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I bought kefir grains online and I make home made kefir. It is dirt cheap and super easy to make and use up. This whole site has been a wonderful resource for me: http://www.culturesforhealth.com/kefir#kefir_articles_recipes_videos
We use it in smoothies, dressings, and I recently made kefir butter. I have also lately been using the unflavored kefir in place of mayonnaise on my lunch wraps (tortilla, veggies, meat) and home made burgers. I use store bought whole milk for the grains to culture since none of us have milk allergies.
Kiddo has not has any poor reaction since starting it, so for her anyway, the strep in it is not a bad kind. If you want some grains, PM me, I have one spare batch that have been frozen you can have. They can be converted use any kind of milk you want, it just takes a few times to let them get used to the new "milk". If you have any questions, feel free to ask here or PM me.
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I just bought kefir from the whole foods section of my local grocery store. I think there are better kinds out there and I hear a lot of people buy the grains online and have them home made and I think I will look into doing that. Apparently it's a really good source of probiotics. Here's what the website listed for the one I bought:
"contains Lactobacillius Lactis
Lactobacillus Rhamnosus
Streptococcus Diacetylactis
Lactobacillus Plantarum
Lactobacillius Casei
Saccharomyces Florentinus
Leuconostoc Cremoris
Bifidobacterium Longum
Bifidobacterium Breve
Lactobacillus Acidophilus
Bifidobacterium lactis
Lactobacillus reuteri
Apparently there are strains of Streptoccus in kefir, which bothers me a bit considering strep causes PANDAS, but I guess that is a specific strain called "Group A-hemolytic strepococcus" or GAS. This Diacetylactis kind is something, according to the producers website, that is typically in sour cream.
I bought kefir grains online and I make home made kefir. It is dirt cheap and super easy to make and use up. This whole site has been a wonderful resource for me: http://www.culturesforhealth.com/kefir#kefir_articles_recipes_videos
We use it in smoothies, dressings, and I recently made kefir butter. I have also lately been using the unflavored kefir in place of mayonnaise on my lunch wraps (tortilla, veggies, meat) and home made burgers. I use store bought whole milk for the grains to culture since none of us have milk allergies.
Kiddo has not has any poor reaction since starting it, so for her anyway, the strep in it is not a bad kind. If you want some grains, PM me, I have one spare batch that have been frozen you can have. They can be converted use any kind of milk you want, it just takes a few times to let them get used to the new "milk". If you have any questions, feel free to ask here or PM me.
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I just bought kefir from the whole foods section of my local grocery store. I think there are better kinds out there and I hear a lot of people buy the grains online and have them home made and I think I will look into doing that. Apparently it's a really good source of probiotics. Here's what the website listed for the one I bought:
"contains Lactobacillius Lactis
Lactobacillus Rhamnosus
Streptococcus Diacetylactis
Lactobacillus Plantarum
Lactobacillius Casei
Saccharomyces Florentinus
Leuconostoc Cremoris
Bifidobacterium Longum
Bifidobacterium Breve
Lactobacillus Acidophilus
Bifidobacterium lactis
Lactobacillus reuteri
Apparently there are strains of Streptoccus in kefir, which bothers me a bit considering strep causes PANDAS, but I guess that is a specific strain called "Group A-hemolytic strepococcus" or GAS. This Diacetylactis kind is something, according to the producers website, that is typically in sour cream.
I bought kefir grains online and I make home made kefir. It is dirt cheap and super easy to make and use up. This whole site has been a wonderful resource for me: http://www.culturesforhealth.com/kefir#kefir_articles_recipes_videos
We use it in smoothies, dressings, and I recently made kefir butter. I have also lately been using the unflavored kefir in place of mayonnaise on my lunch wraps (tortilla, veggies, meat) and home made burgers. I use store bought whole milk for the grains to culture since none of us have milk allergies.
Kiddo has not has any poor reaction since starting it, so for her anyway, the strep in it is not a bad kind. If you have any questions, feel free to ask here or PM me.
:angry: 
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Fever immediately after stopping antibiotics?
in PANS / PANDAS (Lyme included)
Posted · Edited by Mayzoo
In the 40 days of abx, did he ever culture or rapid test negative for strep?
He may not have it again, but he may have it still.....meaning he may have never gotten rid of it yet. My daughter had it for almost 60 days of straight abx rapid testing every 10 days to see if it cleared yet. When we finally got a negative rapid, we sent one off for culture to confirm.