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4Nikki

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4Nikki last won the day on May 13 2019

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About 4Nikki

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  1. Her pandas doctor ran the tests. They even have a swab test now that tests if they work properly.
  2. This may not be of much help. SSRI’s for some of (pans/pandas) kids have the opposite effect. Your going to need the advice and supervision of professionals that understand how to administer and closely monitor the treatment. Our kids all react uniquely and are at different stages of need. Our DD went through all of the SSRI’s and the doctor quit because nothing worked or had effects he wasn’t prepared for. His conclusion, it’s pathological and needs a different kind of expert.
  3. Internet. They have more savvy with technology than we think they do. Exposure is a stimulate., but they need a physical release. If Sports is available it can help. His mind needs to be active. Replace the behavior with something else to change the urges.
  4. How’s your mitochondrial cells? When we discovered mitochondrial deficiency, support made a big difference. My daughters immune system is sensitive to big changes and easily overreacts. If we use something long term her immune system start to reacts. We have to write a daily journal and track everything. History helps big time.
  5. Do you have central Air? If so you can use low level micron filters. I would suggest adding uv light at the filter. I use a portable lamp in the bathrooms. Lights are cheap.
  6. I can't recall the name off the top of my head. Its been a while. But shes at children's. Anyone can read the tests and provide insight if something needs help. The numbers are pretty basic to them and they are properly trained. Unlike us desprate parents! We got confirmation of Pandas through the Cunningham panel. Maybe getting it, it helps with stress relief as well? Vital kids medicine Dr G or Dr Rhoy at center for healing neurology Is a good place to get good direction toward tracking down the root causes of your child's issues. The build up of ensimes and anti-bodies in the brain, reported by the Cunningham panel is a result of something else. We have to find the something else. In our DD's case, at least part of it, is deficient mitochondrial cells. Once we got DD on support for mito, her symptom became more manageable. Some Doctors are better at deductive reasoning than others. I like the ones that have a D.O. acronym behind their name. DW is a surgical nurse and she likes the Dr's that are the best surgeons. She's changed many pcp's. I think the best doctors are the ones that give good advice. I've had one doctor in Washington for the last 7 years. In Southern California, I had one Doctor. My Dr. Is also DD's primary even though DD has a great pans/pandas doc. Our kids have very complex cases and its a good idea to have checks and balances when seeking treatment so there is plenty on concise reasoning behind our decision making. It also helps keep the expenses down, while seeking solutions that are hopfully the right choices.
  7. So the gcmaf treatment is to boost the micro(somethings) that help the little Pac-Mans eat the Nagalase which goes up in count when viruses, bacteria or things like cancer are going on. Basically it’s to help the immune system work better.
  8. Oh Gosh, I have to look it up in the summary. It’s a blood test the doc did and she gave us a summary of the mitochondrial system and said that Dd’s Cells were deficient. The doc also did a mito swab test to check the function of how they are doing. Now this is where I got lost last visit to the doc because DW is a nurse and is usually the one to take notes and explain the stuff over my head, but she was upset with me and wasn’t at the last visit. DD is going for a series of treatments 4 of 10 are at the doctors office and the rest are at home. This is not the IVIG but something to do with gcMAF. I’ve got a little unstanding at a high level of what’s going on but get into the lower level of the details and things get over my head. I don’t get some of the terminology they talk about DW has to explain it more when we get home. Doc does a pretty good job of dumbing it down for me but I get information overload. There’s a lot of good vids on YouTube that explain the mitochondrial system and what can be done to help it out when it’s not working right.
  9. Strep bacteria is known to hide in the tonsils. I'm guessing the same can be true with plaque. Cleaning dislodges the plaque and releases bacteria hiding beneath it.
  10. It looks like there are online purchases available but with all the fake or deluded prescription drugs I’m not sure how you can verify if they are real.
  11. DD symptoms ramp up when a period is coming. She takes boswellia. Before she started taking mitochondrial support supplements, She took Advil cold and sinus which is 200 mg ibuprofen with 30 mg of Pseudoephedrine. 30 mins before symptoms leading to an episode would stop an episode from occurring. It worked so well we got dependent on it for more than a year but then it cause her immune system to attack her thyroid and liver. If it works for you as long as you use it when needed it shouldn’t have any side affects. She took 1000 mg of ibuprofen during flares and it would curb symptoms but not stop an episode. The Advil cold and sinus works way better. DD would also experience symptoms with bacteria infections. I think urine test are less costly than blood tests. You can also ask the pharmacist for over the counter anti inflammatory alternatives.
  12. Many of us get caught up in a diagnosis name. I think we got lucky with a pediatrician that understood what we would struggle with in the medical industry if she diagnosed our child with pandas which at that time was concidered very rare. She made a diagnosis of “unknown autoimmune illness” in 2012. the result being we did not experience testing or treatment denials from our insurance. Example: getting an mri. Symptoms vary in intensity. We thought at first that DD did not have a tic but later realized her tic was verbal. Her tic also changed with a steroid blast treatment from verbal to head shaking. Having no experience with Pandas symptoms makes it hard to define or recognize symptoms. We think the underlying cause of antibody and protein build up in the Basal ganglia. we did eventually get a pandas diagnosis in 2015.
  13. So my understanding is that pandas is a autoimmune illness and it doesn’t work right. Somehow the antibodies get the wrong signal an get sent to do the wrong thing in the body. I thought I understood that IVIG process is to puts good cells in the body That will do the right things but will eventually be used up as time goes by. And the whole intention is to get symptom relief. If you have a child that is raging, it can be unmanageable. If this is what happens then, I’d say it should be said as IVIG works. If your intend is to cure Pandas, then I’d say it doesn’t work. We never had IVIG, steroid blasts gave us that relief. I had originally thought that the steroids were use to reduce the inflammation and maybe it’s part of what happens but the doctor said it’s more that is reset the autoimmune system. It worked twice. When doctors found the underlying cause to be the mitochondrial system and started support for that, it brought the symptom scale from 1-10: 10 down to 1-3. Which is a major difference. Antibiotics also worked immediately for us but since our child wasn’t initially diagnosed with pandas, we never did them long term.
  14. Our DD onset was also at 14. But there was way less info at the time and pandas/pans was very rare. She was out of control her first 4 months upon her onset we had never heard of pandas. After a tip we noticed her throat was inflamed took her to see her PC and she was positive for strep. After she was put on antibiotics her rages stopped. Another two months they came back with multiple Bacteria infections. It took us four years to learn that her mitochondrial cells were deficient. And now supplemental support helps to keep her autoimmune system working better. She has flares but we have found that they mostly con-inside with her Periods, and any infections or viruses. We log everything so that we can look at her history accurately and make adjustments according. Without the history, it’s difficult not to make knee jerk reactions to symptoms.
  15. Short answer is No. PANDAS/PANS is an Autoimmune disorder that triggers inflammation in the neurological system of the brain and everything else were are discovering. With the Cunningham panel telling us that it's an result of an overabundance of buildup from the Autoimmune triggers (IMHO) I think its counter intuitive to trick the immunize system with half viruses triggering the immune system to respond with antibodies and possibly wreak even more havoc than what is already going on. I think our goals is to quiet down the Autoimmune system and not excite it. Now I'm not a doctor, and couldn't tell you if I'm actually right with this paranoia thought because it could be that the antibodies being triggered won't affect the neurological system of the brain that are kids are reacting to, I'm just saying, I'm too paranoid to let my kid'o get a flu shot.
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