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Everything posted by 4Nikki

  1. It doesn’t have to be pandas, I.e. born from strep, symptoms can come from any illness where your immune system overreacts. Look up cytokine storm on YouTube to get a understanding of how the immune system responds to an infection or virus and then you’ll get an idea of why there are so many different symptoms and responses. With our kiddo, the underlying problem is dysfunctional mitochondrial cells. When ever she gets an infection or virus her symptoms are elevated and she gets inflammation markers in her blood test. This means her immune system is building antibodies that are inflammatory. Sometimes her tics are exasperated to the point that it can’t be managed. Benadryl is a blocker and suppresses her symptoms for a while but when it wears off her symptoms become more stronger So we don’t give her Benadryl. However it can offer us relief until we locate the cause. ibprophen & pseudoephed helped with the binding and clears out the log jam of antibodies and protein cells from her basil ganglia. But if we don’t find the infection or virus the symptoms will come back. The Cunningham panel identified which ones were way off the scale.
  2. Hi, Our Pandas doc never recommended IVIG or Plasmapheresis. The reason was, with our kiddo's illness, we would just be treating the symptoms and not the underlying cause. This of course could be very different in your child's case and could offer a period of much needed relief. At the time these treatments were available, we came across at least one of the underlying causes for our kiddo's Immune system disfunction be mitochondrial cell decency. Had her doctor not found the mitochondrial decency, her symptoms would be unmanageable and IVIG or Plasmapheresis would have been a consideration to offer relief. She sis have steroid blasts that worked early on but like IVIG and PEX they treat the symptoms.
  3. I wanted to bump this thread. Enough time has passed where someone could share successes or failures using this treatment. I am specifically interested in managing pandas systems. We get a number of warnings over the years, that turn out to be misdiagnoses. Over the years, One of the most common reoccurring markers is inflammation. But inflammation never shows up on tests except for a kidney stone. I.e. I think her immune system is jacked up with an inflammation response rather than responding to a specific illness or injury. We know that her mitochondrial cells are deficient and she has had the most improvements using supplements that support it. I understand a little about how the HC works having studied the effects atmosphere pressure has on gas in the body and decompression sickness. But I don’t understand how it could affect inflammation and the macrophage response if exposed HC pressure. Maybe it can help with binding clearing the excess antibodies and proteins? How do we get over the panic symptoms of being claustrophobic? If you enter the chamber with two atmospheres of pressure and have a panic attack, you can’t just get out. Also I’m not inclined to pay the high price of treatment when I could purchase one for the price of one complete treatment. I would find some way to co-opt the cost.
  4. Doc. say the vaccine is not a consideration for our kiddo. Her immune system is just too sensitive. We can't even give her supplements without going low and slow. (Update) We just went over our strategy, and kiddo is already on the recommended vitamin D, C and zink, we’re going to add some melatonin. DD’s pandas doctor won’t prescribe ivermectin because she’s been threatened by the AMA for previous prescriptions and will get in trouble if she does it again. I’ve been reviewing how the covid virus and the immune system works. I’m wondering if DD’s macrophage response is the one that causes inflammation and potentially the cytokine storm. I’m wondering if the inflammation markers she gets is exactly this. I’m wondering if our kiddos mitochondrial dysfunction triggers the flares via this storm response. I’d say look “cytokine storm” up on YouTube, but they delete many of the videos. There are actually some ethical doctors disseminating information on YouTube and some stuff is still up there. I can still find some of the uncensored stuff on https://odysee.com that further explains how ivermectin works. It’s not enough that our kids have to deal with pandas/pans. Now, I’m having to navigate corrupt bureaucracy just to put together a first aid kit.
  5. This is very interesting to me. I can't wait to try Ivermectin. I've watched a video of Dr. MoBeen explaining how the immune system macrophages respond and he was explaining cytokine storm. His description sounded so familiar with regard to "inflammation" that I can't help but wonder if this is what is happening in our pans/pandas kids. When my kido's pandas symptoms get exasperated, her inflammation markers are elevated. More often than not, we test her for an infection and she ends up being positive for bacteria and then she get a treatment and her symptoms subside. In another video, Dr. Pierre Kory talks about Long hauler effects of having covid and how the treatment of Ivermectin in Covid patients with underlying symptoms of Babesiosis/Lyme symptoms clear up. I asked our pandas doc about using ivermectin but she chicken to prescribe it because she says the pharmacy with question it. I'm thinking of using an on-line doctor to get a prescription of ivermectin as a prophylactic being it's no more of a risk than taking ibuprofen.
  6. Her pandas doctor ran the tests. They even have a swab test now that tests if they work properly.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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.
  16. 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.
  17. 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.
  18. 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.
  19. 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.
  20. 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.
  21. Has anyone mentioned diet? Sugar is a big exasperator of symptoms for our daughter. You probably already do something like this but we keep a daily journal of everything she takes and note the symptoms, behavior and intensity. This helps us to track and report more accurately to the doctor.
  22. Hi, sorry you have to go through the symptoms. My DD had steroid blast treatments each time her symptoms got worse but after she completed the treatments she had big improvements. The treatments lasted from 6 to 8 months. We’ve heard that the tonsils can hide strep and some have them removed. In DD’s case her autoimmune system suffers from having mitochondrial cell deficiency. She takes supplements to support her mitochondrial cells. It helps to make her symptoms manageable.
  23. My daughter had a verbal tic, during a steroid burst it got so intense her tic was going while she was sleeping. After her second steroid burst treatment same thing happened but after it changed to a head shaking tic.
  24. DD used Advil cold & sinus it reduced symptoms and stopped full rage Episodes from happening. After 18 months, it caused her immune system to start attacking her thyroid and liver. DDs pandas found her mitochondrial cells to be deficient. Once she was put on mitochondrial support her symptoms were reduced to a manageable level. Normal MRI’s don’t show anything looking for inflation. It needs to be the kind that checks for flow. Use Advil on an as needed bases. Benadryl worked for dd as well but symptoms came back stronger after 4 to 5 hours.
  25. Maybe, but I'm not totally sure that's the applicable question? I think everyone (with pandas) is different with regard to using sedatives/anesthetic. It's really tough when you have anxiety, over the top, to sit there with someone probing your mouth and inflicting pain or your in fear of pain because you've had a sample. I have a hard time doing it myself with a mild level of anxiety. With DD, we found that the Dentist makes a huge difference. It didn't matter that she had gas or a sedative, if she wasn't OK with the dentist, it wasn't happening. I'm sure if we had the money, totally out would have been the way to go for us. DD had a crown done that involved a root canal, it took us over two years with the flares and finding dentist(s) to get through it. We had found a good dentist that could handle everything fine but circumstances changed and we ended up going around and around the community until we finally ended up at Western Washington University where they handled everything perfectly.
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