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Everything posted by PhillyPA

  1. Hi philamom I would get them removed. They will cause pain later in life. I got my wisdom teeth removed in my 30's and I wish I had them out sooner. They caused me on and off pain for years and they did mess up the work my braces did for me. I would request an antibiotic. Get those teeth out now. They can cause such problems older. I really wouldn't worry about a flare. It has to be done. Do it now while she is under your watch.
  2. Courtagen allows you to send the results to other doctors. All you have to do is call them and request the results be sent to another doctor. Your pediatrician perhaps? Another trusted doctor? I did this. I called Courtagen an added another doctor to receive the results.
  3. See if your LLMD will give your son a trial of Namenda. This drug took care of my son's OCD. He now has super mild OCD that turned out to be a good thing. His OCD is that he is now a cleaner. I don't mind it at all!
  4. Try Yoga. Any yoga is fantastic but I like Bikram Yoga because it feels good to sweat it out all. I promise you - you will feel so so good after doing yoga.
  5. Getting the flu was horrible for my son. I now get him flu shots every year. It is a risk I take because for him I am more fearful of the actual flu than the shot itself. Every child is different. My son never had a reaction to vaccines or shots so I was comfortable with my decision. I hope your child bounces back quickly.
  6. My son received treatments exactly four weeks apart. He had to stop due to complications. Did I see improvement - yes. Sometimes dramatic. Make sure you get IgA levels checked before going ahead. You want to make sure your child does not have low IgA or complications can happen. Get this check regularly throughout treatment. Will I ever do ivig again - no. The benefits for him do not outweigh the risks. He never came back to himself. It didn't make him recover. IVIG caused more weeks of suffering than happiness for him. The tease was the glimpses of dramatic improvement. Actually, the most helpful thing for him has been a drug called Namenda. For us, the drug has truly been a miracle and I am excited to see how far it will take him. But again, I highly highly doubt my son's illness is pandas. I believe if your child has traditional no-nonesense pandas, he/she will get better and better and recover with treatment like antibiotics and steroids. Maybe a few ivigs at most. If your child doesn't get better your child has an underlying condition of something else. I am certain my theory will not be a popular one on this board. Perhaps pandas has triggered an underlying condition, who knows. All I am saying is that if you don't see a continual upward trend with ivig, don't waste time. Move onto trying something else. Keep on searching. All of that being said, one could say that from a research perspective that the long term results of the ivig kicked in at the same time as that the Namenda was started. Anything is possible. One could reasonable state that after 6 months of no ivig his body is now resetting and the good things we see are because of the ivig. A researcher would probably put that in the scenerio of possibilities. However, as his mom, I don't think so. I think that casual relationship is far reached. I think it is the Namenda. Good luck and don't lose hope. Keep on trying. I hope ivig is your child's cure. It is worth a try.
  7. We did each treatment over two days. He got one gram of iv steroids per day for a total of 2grams of iv steroids per ivig treatment. It did not require tapering. I hesitate to post on these boards because I don't really think my child had pandas. I think it's something else. I think cases and causes are different. I think you should try it(only because it seems you are leaning that way) and see what happens. If, after treatment, the positives outweigh the negatives - keep on going. If you see more negatives than positives -stop. You will know what to do. The answer will be right in front of you, living with you, everyday. Good luck on your journey.
  8. Yes we did a similar protocol. We did hd ivig with 1 whole gram (1000mg) of iv steroids. That dose of steroids you are getting is not very big. The bonus of the steroids is that it keeps side effects of ivig to minimal or none at all. We did this every month for almost a year.
  9. Hopeny - you might want to double check with Dr. O but i believe she only likes NAC from PharmaNac. She only recommends this particular brand. You can ask her about her reasons. We also use this brand. We are also patients of Dr. O's. We had really positive results with the PharmaNac 3X per day.
  10. It would be my guess that many kids on the autistic spectrum would get a positive test result on this test. I think many kids on the spectrum have bad antibodies floating around. It would be an interesting study to see. If they are going to promote treatable autism, I would like to see a chart/research comparing TS Kids, pandas kids and autistic kids. I would love to see those numbers.
  11. Jag 10 - I was stunned and it bothers me greatly. Yes, I agree Pandas can cause autistic features but I don't think it should be featured as a cure for a possible cure for certain types of autism. It feels wrong. It feels as if some marketing team is trying to feed off the desperation and hope of parents who have kids with autism. Makes the whole thing seem like they are selling snake oil. Again, yes, I know kids get autistic features but it is entirely different than classic autism. An autistic child can get pandas and get more severe. An autistic child can get OCD and tics after strep. But the promo on the site just seems so wrong. It bothers me. I KNOW kids can look totally autistic with sudden onset pandas. But the promo doesn't feel right.
  12. Both my husband and myself get migraines.
  13. I thought about a Chiari, but Im sure they would have found that on a CAT scan or MRI... Vickie, my son is no longer on antibiotics. When he gets a headache sometimes he covers his eyes and says his eyes hurt. It seems like a migraine. I am suspicious of these headaches because they started when he first got sick and never went away. We have had this problem before he ever had a drop of IVIG in his system. Thanks for all of your advice. I'm on it.
  14. Ok. I'm losing an IQ point daily. Do you have to have Lyme to have this? That's why they call it a co-infection,right?
  15. I am going to throw-up. I feel utterly sick. My office floor is covered in files. Everything pulled out. I see no test for babesia. Which I find impossible. And if it is possible. I am going to be really really p*ssed off.
  16. My son, now age 10, got sick at age 5. It started with a big 'ol headache and he continues to get them. They are bad. He often throws up. It is not a brain tumor. Anyone? Anyone's child get constant headaches?
  17. Iowadawn - I get it. I totally get it. You have to do what you have to do. You have my support and admiration. You are so strong. Stay strong.
  18. I certainly am not anti-antibiotics but we should all be informed. Years ago I was prescribed one of these antibiotics, read the black box warning, and threw it in the trash. That being said, ya gotta do what ya gotta do. If your kiddo needs one of these drugs, don't panic. There are risks to everything. You have to weigh benefit vs. risks. The benefit of getting your kid back to health is a very important. http://well.blogs.nytimes.com/2012/09/10/popular-antibiotics-may-carry-serious-side-effects/
  19. Oh that is going to cost a bundle! Wow. You got the trauma team! I'm glad her toe space is okay. I am sure the plastic surgeon will make sure that her future pedicures will look picture perfect. But you know what - it is good they did all of those tests. Especially since you weren't there to observe the accident. Now you know she doesn't have a fractured coxic (spelling?) bone or a subdural hematomba. You can check those worries off of your list. I gotta go. I have bags under my eyes and a bit of sagging. I am calling the ambulance for the trauma team. Maybe I'll get some plastic surgery thrown in under the diagnostic code of PTSD.
  20. I guess it all depends on what one's experience has been. My son did not get a flu shot in time in 2009. I had him scheduled to get the flu shot but he got the flu a few days before his appointment. Getting the actual flu ruined him. He collapsed further into the abyss. It took him two years to come back to where he was before getting the actual flu. I never missed a flu shot since. He is getting his flu shot this year in a couple of weeks. I am more terrified of him getting the actual flu than the vaccine. We have never had any problem with vaccines. Never the live vaccines always the killed virus.
  21. I believe the best course of action is that whenever your child is having any kind of surgery to always ask for no nitrous oxide. Why take an unnecessary risk? There are plenty of other drugs that they can use.
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