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Megan

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Everything posted by Megan

  1. Yeah, can you believe it? I'm sure he was regretting making the call - he did mention he was not getting paid to do this! My husband always asks me why I try to teach these doctors (normally in the Lyme disease context). You are probably right...it's futile but I guess I have the hope one day when the mainstream thinking finally accepts what we have known for years that they will remember part of what I said and realize I was right.
  2. Thanks Lilly - I guess my child is not alone....do you mind sharing how you got rid of these symptoms for your child? Glad to hear they are gone! Best, Megan
  3. Thanks Mary. It sounds like the symptoms are gone? That is great news. What did you do to heal your child? Thanks so much. Megan (I grew up in Michigan!)
  4. I just recently am dealing with PANDAS so can't help in that area but am very well versed in lyme disease and the coinfections. Babesiosis is a coinfection of lyme that can affect the heart and cause extreme fatigue as well. My children were very nauseous when they had babesia and would not eat much. They also had night sweats but mostly just fatigue. It can cause anemia. One child of mine had chest pain and heart palpatations from it. Air hunger is a huge babeisa symptom as well. Igenex labs in CA has a good babesia test in case you want to rule that out. Megan
  5. My dd6 has been having terrible violent tantrums every night for the past 6 weeks. They had started a month earlier but were not every night. Along with these tantrums she gets blurred vision and can't hear well but complains that loud noises hurt her ears (although her own screaming does not seem to do so). She also gets skin sensitivity and screams "don't touch me it hurts". Now the vision and hearing issues seem to be present for most of the day when before they used to come and go more. I am wondering if these are typical PANDAS symptoms? Thanks so much. Megan
  6. Hi all, I am new to the board and would love to hear your experiences with tonsillectomy. I know it can help in some cases but is not considered an official PANDAS treatment. My daughter is scheduled for one in 2 weeks. She is on zith but still having bad tantrums every evening after dinner. We may be switching to augmentin. If your child had a tonsillectomy, was he/she having any PANDAS symptoms prior to it? Did the surgery stop any of the symptoms? I have heard that you want to try to clean out the tonsils with abx prior to the surgery but I am wondering if the fact that she still has symptoms means the tonsils are still infected. Also - the ENT who will be taking them out uses a procedure called an intracapsular tonsillectomy which leaves a small part of the tonsil intact. I don't think this is a good idea but was wondering if anyone can tell me if they had this type of tonsillectomy? I asked if they could do the traditional one and he said probably unless they were too far back or something. Finally, has anyone had a complete remission with the tonsillectomy? One woman in my local mom's club said her son's tantrums stopped immediately after the tonsillectomy and haven't returned so far (months later). She was not aware of PANDAS but was told by her ENT that kids get tired from not sleeping well and then have tantrums. At least the ENT recognized the link between tantrums and tonsil removal even if she didn't see PANDAS as the cause. Thanks, Megan
  7. KO's mom - yes, I am very skeptical of the mainstream medical establishment based on years of healing my family from lyme disease which I had to diagnose myself, research myself and find the right doctors when my pediatrician and family doctor failed to do so! Very, very few doctors know much about lyme disease. Even the lyme literate ones often fail to treat the coinfections adequately. That arrogant pediatrician from the hospital called me today to check up on my daughter to see how she was doing and I sure gave him an earful. He knows what I think of his absurd diagnosis. When I asked him today if he would change the diagnosis if the ASO comes back positive, he said NO! I guess that says a lot. Thanks JPdad for the explanation about the ibuprofin.
  8. Thanks missmom - that makes sense to me. What does the ibuprofin do? Is this something all of the PANDAS experts recommend now? Thanks, Megan
  9. Thanks for all of your replies. Had to take my daughter to Dupont hosital ER after I wrote the above post on Thursday night because she started having uncontrolled movement of her hands and feet and head - it sounded to me like chorea but the docs at Dupont didn't think so. They admitted her and she stayed overnight and we met with tons of specialists (rheumatology, infectious disease, and neurology). The lead pediatrician was quite closed minded and he put the group of specialists together and at the end of our stay said that my daughter has somatization disorder or "stress". This is based on his interview of me where he learned that I was sick with breast cancer last year and my lung collapsed twice and that I have another child with psych issues now. It was such a waste of time. He claims to use evidence based medicine...what evidence is there for this diagnosis?! What study supports this? Ugh.... The only abnormal bloodwork was an elevated ANA....but this does show that her immune system is off and there is an autoimmune reaction going on!!! We are waiting for the ASO and DNASE. Beeskneesmommy- thank you so much for the info about Dr. Elia!!! I have been trying to locate her but have had no luck. Are you able to provide her phone number? I would love to start the ball rolling and meet with her. I wonder if she will bring plasmapheresis to Dupont?! I did learn yesterday while I was there that they don't do that treatment there now. Do you mind sharing about what you did to heal your son? I love to hear such good news that he is doing great. Also - my two kids are on zith...my daughter for 2 weeks so far and I don't think it's helping anymore. Feel like I need to switch to augmenten or something. I have a doc who will give it to me. How long and which abx do you see used to sterilize the tonsils? Thanks so much!!! Finally - I am not seeing much progress on the abx....have others experienced the same thing? The tantrums are not going away with the zithromax. Thanks, Megan
  10. Hi all, I am so grateful to have found this forum. I have two children recently diagnosed with PANDAS by an open minded doctor in our area and have a few questions. I am wondering if anyone's child had bad knee pain with PANDAS....my 6 year old daughter can no longer walk. Today my son cannot walk either due to the knee pain. We have been battling chronic lyme but we were getting better on that front. This knee pain could possibly be lyme but I think it might be PANDAS. Can this be rheumatic fever? How do you test for that? Has anyone seen this with strep? My daughter also has other neuro issues like double vision and extreme noise and skin sensitivity which comes and goes. She also tantrums every night. My son has tourrettes and screams and cannot go to school any more just in the last 2 weeks. He was previously a very good student. I am so upset. My daughter is scheduled in 3 weeks for a tonsillectomy. Not sure what to do with my son. We can't get into Dr. L in Baltimore until February. Could see Dr. T in NY but not sure if it will get us anywhere. I am thinking plasmapheresis for my son if I can get it done. I guess the first step is to get him on an antibiotic to see if the symptoms go down? The doctor will give him some but he has a very sensitive stomach so I worry about that. I wonder if I should try to find a doc who will take out my son's tonsils as well because we have been passing strep around our familly for the past year. I feel like that will diminish if the tonsils are out. I read Dr. Harley in Georgetown is an open minded ENT. Maybe I should travel there from Philly to meet with him? It is devastating to see my son become nonfunctional. The only thing he can do is video games. That is all he thinks about day and night. Thanks so much, Megan
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