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pandakid11

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Everything posted by pandakid11

  1. Hi Be careful. Side effects are severe vomiting for days and possibly worse pandas once it wears off. Just an FYI.
  2. HI Our LLMD is prescribing Rifampin for our DS12. He says it crosses the Blood Brain Barrier and should calm down inflammation there. Thoughts? Experience? Thanks
  3. Hi Is lyme contagious from father to son?? Thanks
  4. I know 2 parents who refused to get vaccines for their kids and both have kids with ZERO health problems. My gut was to avoid them. I wish I did. Now, I feel like they ruined my kid's life.
  5. http://vaxtruth.org/2012/01/is-pandas-really-vaccine-injury/ This will blow you away. Just an FYI - My DS was diagnosed with conversion disorder 3 months after starting Junior High and has not been back to a regular school since. Basically, he is homeschooled with an option to attend classes on Fridays. We are trying one class on Friday but having major trouble getting him to do it due to unexplained anxiety.
  6. If he has lyme, he is herxing. Back off. I am an adult and can only handle about 10 at once. Good luck.
  7. Yes, Lyme cycles every 21 days so depending where it is in the cycle. Stuff is brutal. Good luck to you.
  8. Herxheimer. It is die-off. I am pretty sure your kid has a co-infection of lyme or mycoplasma fermentans.
  9. So, how would they solve a school phobia/anxiety problem when you are thousands of miles from school? Just not sure I am grasping this program. Thanks
  10. HI We are exposing him. We take him there and expose him to the environment. I am lost in what you mean by exposure as we are doing it and it isn't solving it. What is different? Thanks and sorry I am so lost in what you are trying to convey.
  11. Our son, age 12 is out of school but trying to do homeschool with attending a class on Friday. Eventually, we would like him to go to 4 classes on Friday but cannot get him to one. Once we hit the school, it is like a switch goes off. He gets pale, shaky, eyes rolling back in head, says "I feel like I am going to die" and cannot get to the one class. We thought this was a way to gradually get him back into school but we are failing thus far. He isn't sure what the anxiety is? How do you overcome this? It is awful. We had an easier time doing pre-school than this. The parent stays at the school while the kid goes to class or classes so attachment anxiety shouldn't be there. How can we get to the bottom of this and push thru it? We had his psychologist there trying to talk him into it and he got him to the class whereby, our son collapsed. Thus, he couldn't do it. Do you think hypnotherapy may work? We are devastated. This was a kid who never missed a day of school K-5. This illness is so baffling and makes no sense. Afterwards, he feels so guilty and ashamed for not being able to do it. What the heck is going on? Thx for help. TIM
  12. Hi I don't know what to do to get over this. Even trying one class is impossible and will lead to shaking for 2-3 days. He says it is happening outside his control. He wants to go, then his subconscious stops it. This is so baffling. I don't really have an answer. I feel like we need to break the ice though. Ugh! So tired of this stuff.
  13. All vaccines are bad except tetanus. This is what caused PANDAS in the first place. AVOID.
  14. What do you do when your kid starts shaking and cannot walk when approaching school? He doesn't even know what the fear is? We are trying one class but cannot even do that. This is awful. Thanks Tim
  15. Hi Our very intelligent LLMD thinks that a strep infection, not antibody attack, is the culprit in PANDAS. He thinks it often co-exists with mycoplasma fermentans or lyme and takes up residence in the basal ganglia area of the brain. This is why antibiotics help some people as antibiotics would have no impact on antibodies. It makes sense. We have felt our kid is fighting something all along. Plus, most autoimmune blood tests are normal, which would further justify the thinking that an autoimmune attack is not present. In most cases, the ASO is elevated due to the constant non-stop infection. Anyways, that is his theory. Very hard to treat but he says melatonin is a must. Also, he is VERY AGAINST SSRIs as they throw more gasoline on the fire. Take care.
  16. HI I would say "Sit down and talk it out with her once she calms down. Explain how the illness is the enemy, devil, evil etc...and that you want the good "her" inside to win." This does work. They will take it as a challenge to defeat the enemy/devil/evil within. Thus, you are not punishing, but explaining to her how this illness is making her act and you want to work together to defeat it. I would use rewards for times she is able to defeat it. They have suffered enough. They don't need punishment, too. Good luck.
  17. Strep tests keep coming back negative. ASO is high, though. What infection could it be? We have had a ton of blood tests, but nothing shows. He was on anti-biotics for quite some time and now cannot tolerate them since he is so nauseated. What the heck is the infection? I think he has one, also, but we haven't found it. He feels way worse at night, which is common in fighting an infection. So frustrating. Western Blot had zero bands, so not lyme. Thanks Actually, the separation anxiety is a big, very significant sign of infection.
  18. He has had 4 over the course of a year and all are 3x abnormal. There are no signs of infection, just high antibodies, but why are they high? Frustrating. He is a great kid. I feel so sorry for him. Get a second ASO; NIMH (Swedo) considers the direction of the titers -- rather than a single freestanding measure -- as indicative of trouble and of the condition. If the number continues to trend up, or fails to fall on the heels of treatment, then that's indicative of an auto-immune imbalance. You need a PANDAS doc. The "not walking straight," sensory issues and unabating anxiety are all signs of infection and autoimmune response to the infection; my DS did these same things in the depths of his illness (he actually dragged a leg behind him, which I thought of as a mere "quirk" and not a physical manifestation of the illness until I came here and "got schooled"!). No psych ward, but I do agree with dcmom regarding the positives of therapy. Though it also sounds to me as though your DS is still in the midst of a pretty dramatic episode of illness and needs medical intervention, pronto!
  19. I am the Dad. I thought it was really cold. Am I wrong? I am switching doctors for him. There has been zero compassion during this entire ordeal and we have seen about 10 doctors. They blow it off as conversion disorder or being a troublemaker. He was an honor roll student with perfect attendance prior to this horrific illness. They blow off the ASO as being worthless even though it is 3x abnormal.
  20. Doctor thought it would break the cycle of being attached to parents. I cannot do it, nor would I. He is suffering and needs his parents. He is not angry or raging, just anxious and has multiple sensory issues plus cannot walk straight. I thought that was cold. Am I wrong? I have had it with doctors. They don't care about this and think it is all psychological. : (
  21. My son has bad pain all over and is negative for lyme. It is all somatization from the anxiety, I think. Not sure, though. Been to too many doctors and no real answers. You are not alone. Take care
  22. HI I am hearing that strep can hide out in ears and not cause pain but can cause nausea, balance issues, walking issues, anxiety, etc....how do you check for strep in your ears? The OCD fdn said they have found many pandas kids with strep hiding in their ears. I cannot find out how to check for it. Regular doctor is out of town. thanks
  23. HI We had to stop. The ABX were killing his stomach and causing nausea. We cannot afford IVIG nor do we want it. It has too many side effects and too many horror stories. I think benadryl helps. I wouldn't stop the melatonin either. Good luck. Studies have shown no real help from ABX anyways. Maybe early on, but not after several months. They wore off. Take care.
  24. HI I will try the Rhizinate. Thanks. He gets so nauseated, which increases anxiety, which increases nausea in one huge loop. All the nausea meds like zofran do nothing. Was there any side effects to the Nux Vomica? It is listed as a poison but I imagine in small doses, it isn't. I just have never seen homeopathy work. I wish it did. Thanks again TIM
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