Mayzoo
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Posts posted by Mayzoo
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Really?? We usually use CVS for prescriptions but they did some looking (several months ago) and said they couldn't get dye-free azith tablets. I would think if one CVS could do it, then all could. Ugh. I think I'll bug them again. Do you happen to know the manufacturer of the tablets? Sandoz makes them, but that's the company that Rite Aid is telling me is backordered with no date for fulfillment.
Try these brands:
Wockhardt
Apotex
Greenstone
Pliva
Teva
Pfizer makes a 600mg
And of course Sandoz
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Independents tend to be more likely to make special orders than chains are. Just my past experience anyhoo.
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Actually, here is a link to start a free month trial and see if you like it:
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If you PM Sheila, she may have a month free that she can offer you. This link may work for you to PM her:
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Yes, horrible constipation. I started Acyclovir and it's the only medication that she hasn't gotten violent with. She also started pooping with it. I am holding my breath that this continues. I am working on clostridia at the same time. Still real sick but not as psychotic and aggressive. Phew! So, I don't have to space the probiotics away from antiviral like I did with antibiotic. Thank you everyone for your help!!!
If she goes back to constipation, here is yet another herbal product you can try. It has worked for us:
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Should be just fine.
Didn't your daughter also have constipation?
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I just needed to pop on and say a super congrats on such a personal milestone for you. Regardless of the medical outcome of your tests, you should be very proud that you overcame such a difficult task!!!!!
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I agree with having titers drawn. We had our daughter's drawn and her varicella titers were through the roof and much higher than they would have been on a healthy child. She developed shingles on her ear two weeks to the day of receiving her varicella booster. We have a religious exemption in Texas and have those exemptions for both kids. I am hoping that we will continue to be able to keep that exemption with vaccines being a hot topic right now.
Deb can you tell me how high were your daughters titers we had the titers done on our 5 year old they seemed high and after review my sons neuro immunologist is sending them to rheumotology and not sure why! Waiting for doctors to give us an explaination.
I am not Deb obviously, but our kiddos varicella is sky high too. Varicella immune is considered >134. Our kiddos was 1113. Our immuno did not refer us to a rheumatologist,
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I can relate, sadly. My daughter was not in the right birth position and I and the doc knew it 30 days before I delivered. For 30 days I did exersizes to turn her, and when I went into labor, the staff never said anything about her not turning, so I assumed she turned. She did not, and the doc did not say anything about a c-section. Needless to say, she was born natural by forceps and sustained several serious birth traumas. If I knew then what I know now, I would have pushed for a c-section which is how babies in her position should have been delivered.
I still beat myself up over this, but I heartily recommend you do not beat yourself up--yes I am a hypocrite
. I doubt you knew she should have a spinal tap, just as I did not know my kiddo needed to be delivered by c-section. Hind sight is always 20/20. Blaming ourselves does not help our kiddos now. It just wears us down (speaking from experience). -
Our PANDAS doc ran these on kiddos first visit:
CBC
Thyroid
vaccine titers
Complete Metabolic panel
IGG, IGE, IGA, IGM levels
Chlamydia pneumoniae
MTHFR mutations (insurance did not pay for this)
Mycoplasma
CMV
Vit D
EBV
Anti-Dnase
HHV-6
Coxsackie A & B
HSV I & II
Celiac
Homocysteine
Magnesium
Cerulplasmin
Copper
Zinc
Ferritin
Lactic acid
Streptozyme
Antistrptolysin o ab
Ammonia, plasma
Triiodothyronine
Selenium
OAT test (urine test)
Neurotransmitter test (urine test)
Porphyrin panel (urine test) -
what should I avoid giving Candida Cleanse (http://smile.amazon.com/gp/product/B0158VYYE8?psc=1&redirect=true&ref_=oh_aui_detailpage_o03_s00) with?
Kiddo is on:
Probiotic
ABX (Biaxin, Augmentin)
Anitfungal (diflucan)
And a bunch of other stuff that should not affect this, but of those above, do I need to avoid giving Candida Cleanse with those?
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Ask your dentist/orthodontist for a prescription for Peridex. You can soak the retainer in that.
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Hi Madhu and others please let me know if you did find right doctor to test and great pandas in Dallas or elsewhere in Texas, as I am in same desperate situation feeling blamed for and watching my dd suffer for past 3 yrs
We see Dr. Rao in Plano. I will pm you some details, but we are overall happy with him. He is an immunologist who treats asthma, allergies, autism and is quite renowned in PANDAS.
TEXAS
- *Dr. Sesgagiri Rao (Leading PANDAS Physician)
Immunologist
972-964-7374
Plano, TX
will treat more complicated cases involving PANDAS and Autism
- *Dr. Bruce Russell (Leading PANDAS Physician)
Pediatrician
361-794-1930
Port Aransas, TX
May not be accepting new patients.
Will treat more complicated cases involving PANDAS and Autism
- Dr. Shreenath Doctor
Neuropsychiatry and Clinical Pharmacology
713-524-3399
Houston, Texas
http://pandasnetwork.org/researchandresources/find-help/usproviders/#TEXAS
- *Dr. Sesgagiri Rao (Leading PANDAS Physician)
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We see Dr. Rao in Plano. I will pm you some details, but we are overall happy with him. He is an immunologist who treats asthma, allergies, autism and is quite renowned in PANDAS.
TEXAS
- *Dr. Sesgagiri Rao (Leading PANDAS Physician)
Immunologist
972-964-7374
Plano, TX
will treat more complicated cases involving PANDAS and Autism
- *Dr. Bruce Russell (Leading PANDAS Physician)
Pediatrician
361-794-1930
Port Aransas, TX
May not be accepting new patients.
Will treat more complicated cases involving PANDAS and Autism
- Dr. Shreenath Doctor
Neuropsychiatry and Clinical Pharmacology
713-524-3399
Houston, Texas
http://pandasnetwork.org/researchandresources/find-help/usproviders/#TEXAS
- *Dr. Sesgagiri Rao (Leading PANDAS Physician)
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I just applied the patches tonight. Will post back in a few days to let you know if I see a difference. We are not in a bad flare right now, but kiddo does have her vocal tic, piano fingers, and the upsets at least once a day right now.
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Just another option: My kiddo got a "tummy" right before she started her menstrual cycle. Now she gets a tummy right before a growth spurt.
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Some do, some do not. Here is a chart that may help:
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Here is a small part of the e-mail I received back:
"Repreeve is like an acupressure derivative. It does not contain chemicals (it does have adhesive on each patch- similar to a clear bandaid). It puts a tiny amount of pressure in six different locations in the body."
"I might add that some of the benefits we hear quite often include feeling calmer, better sleep, less anxiousness and less upset stomach."
"We have not tried the patches historically on children who have identified PANDAS as a source of their tics but we have worked very successfully with auto immune disorders in adults such as MS and Parkinson's and we have worked with Doctors to obtain objective results in some of those cases."
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I am requesting a sample. Time will tell.
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You are right about the flour. 100% natural means nothing other than it comes from the earth. The fact that it is desiccated with pesticides is obvious in the omission of the "organic" label. Don't be fooled into complacency. We vote for or against organic foods with our pocket books.
Mother Earth products - dried vegetable soup:
About the Product- Non GMO and gluten free
- Can store up to 25 years in proper conditions
- Snack out of the bag or use with meals or camping
- Great source of essential vitamins and minerals; One full quart in plastic jar
- Look for all our other great product's; Dried veggies, freeze dried fruits and veggies, true dehydrated beans and TVP
Textured vegetable protein:
http://www.livestrong.com/article/495664-harmful-effects-of-textured-vegetable-protein/
Textured vegetable protein, TVP, is also known as isolated soy protein. It is a protein derived from soybeans, but the processing of soybeans into TVP includes chemical alterations. The makers of TVP first mix soybeans, with the oil removed, in an alkali solution, wash them in acid and then neutralize them in a different alkali bath. They then spray-dry the resulting soy curds using high temperatures that turn the curds into powder. More high temperature and pressure applied to the powder results in textured vegetable proteins that can be shaped into strips, chunks or granules for use in foods as meat substitutes. The processing adds flavor enhancers, artificial colorings, emulsifiers and thickening agents, including nitrosamine, which is a carcinogen -- a substance known or is suspected to cause cancer.
Textured vegetable protein may not be harmful for everyone, but it contains a hidden ingredient that causes reactions in some people. Textured vegetable protein, has MSG, or monosodium glutamate, a common flavor enhancer. If you are MSG-intolerant, you may experience unpleasant reactions to eating foods with textured vegetable protein. People with soy allergens may also experience discomfort and problems from eating textured vegetable protein
Just for clarity, the TVP is a different product from what I linked. It is listed under the "Look for all our other great product's". I do not even know what TVP would be used for
.The white flour is not organic, but it is non-gmo, unbleached, and not bromated. The multi grain bread flour, lentils, brown rice flour, and coconut flour are organic. I have not yet found an organic white flour that we can afford so we just don't use it often. Sadly, not everyone can afford to go 100% organic. It is just not feasible for most of us. We have to do the best we can within the budget we have.
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We are using these now:
Flour:
http://smile.amazon.com/gp/product/B00FJNVSOA?psc=1&redirect=true&ref_=od_aui_detailpages00
http://smile.amazon.com/gp/product/B0049YMC3Q?psc=1&redirect=true&ref_=oh_aui_search_detailpage
http://smile.amazon.com/gp/product/B00BSZBEAG?psc=1&redirect=true&ref_=oh_aui_search_detailpage
along with several Bob Red mill rice flour, and lentils (we grind into flour) These are non-gmo and organic.
Noodles:
Rice:
http://smile.amazon.com/gp/product/B005763K40?psc=1&redirect=true&ref_=oh_aui_search_detailpage
http://smile.amazon.com/gp/product/B000EH0RU2?psc=1&redirect=true&ref_=oh_aui_search_detailpage
Most our veggies/mushrooms are now dehydrated:
We do not completely avoid gmo or pesticides this way, but they are reduced dramatically. White rice and processed, bleached, bromated flours are highly inflammatory, so that is where we started was trying to reduce inflammatory foods.
And heck it all benefits PANDAS network when I buy it through Amazon, so a double benefit!
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My DS15 tried CBD capsules this week for the first time. 25 mg capsules 4x a day. This was prescribed by his doc in addition to one LDN capsule at night. We were trying these to help taper him off the prednisone. When he started a prednisone taper 2.5 weeks ago he had amazing results and was almost symptom free within 24 hours. We had 10 blissful days symptom free. I got my child back! Once his dose was cut by 60% most of his symptoms came back. We increased his prednisone a little bit to stabilize him again which worked. But We then added the CBD and LDN to see if we could taper the predinsone more. In the last 5 days since starting the CBD and LDN he is much worse. He has been extremely tired and nauseous and light headed. His anxiety has been off the charts again (his worst PANDAS symptom). Today I cut the CBD and will not give him the LDN. The two do not seem to have helped at all. We are just trying to wait this out as his doctor is working with our insurance to get IVIG approved. I gave him another 5mg of prednisone today but I have seen no improvement but he does not seem as tired and no nausea or light headed.
Has anyone had these results with CBD or LDN? I think I read if you have a CBS mutation that CBD may not be a good option because of the sulpha in it? I would love some feedback. Thanks!!
We have never tried LDN or the capsule version of CBD. Kiddo tolerates the oil very well and it helps her virtually every time we use it. Sometimes it is not enough to completely reduce her anxiety, but it still helps.
Prednisone also gets my kiddo back to almost 100%, but we only use a taper of it as a last resort when she stops eating. She is already immune comprimised (low IgG and IgA), so I try to stay away from it as much as possible.
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The CBD we use is from Hemp and I usually buy it from Amazon. We currently use the Cibdex brand. I will PM you with another brand we have tried.
donation.
. I doubt you knew she should have a spinal tap, just as I did not know my kiddo needed to be delivered by c-section. Hind sight is always 20/20. Blaming ourselves does not help our kiddos now. It just wears us down (speaking from experience).
NOTE: Product Discontinued in 2017 (A new natural approach to tics and stuttering)
in PANS / PANDAS (Lyme included)
Posted
Sorry, but they did not help kiddo with vocal tics or selective mutism.