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Phasmid

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About Phasmid

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    Palos Verdes

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  1. Hello everyone, Wanted to give a, probably last, update on my son since this month marks 1 year post IVIG treatment for his PANDAS symptoms. It has been 8 years since all started. He had been treated with antibiotics, but didn't get IVIG until 2010, a low dose treatment. In 2011 he got one high dose treatment here locally at our own hospital, rather than down at UCLA. We worked with Dr. T. for initial tests and consultations, Dr. K for phone consultation, Sean McGhee, MD at UCLA, and our local pediatrician who was willing to learn, get up to speed, and think out of the box. My son was sev
  2. Hey TMom, As luck would have it, he got strep throat two weeks ago, and again last Friday. He has been on amoxicillin 500 , and I think I will keep him on through Strep season now. He did not have a return of symptoms, but he has been a little more emotional, kinda depressed. May not have anything to do with it.
  3. Gosh, it has been a long, long time. I can hardly write this... have no idea where to start since it has been so long. Some may remember, my boy fought PANDAS or whatever the heck we call it now since age 4 really. Strep infections documented. In 2008 he had a horrific relapse at age 10. He has had trichotillomania the entire time, even when other tics and behaviors were absent. The last school photo of him looking "normal" was in 2nd Grade. He has had no eyelashes either. In 2010 he had a return of some terrible OCD stuff. Finally, in January 2011 my son had his first IVIG treatment, but
  4. I don't know who is still around this forum, but wanted to give an update. Hope many of you have had healing and lots of help. My son, now 13, just received a high dose infusion after 8 months of denials and appeals. His first, a low dose, was back last January. I can't re-tell our whole story, but will do as best I can. He received 40 grams yesterday, and 40 grams today. All went smoothly. Anthem BC came through after two appeals. I think we had success due to a very emotional plea in the form of a four page appeal letter that spelled out my son's suffering nearly his whole life. Also
  5. On PANDAS Network, summary of Cunningham's research.
  6. Hi, The first episode my son had, he was not treated with antibiotics (actually he was given an antifungal, not antibacterial medication) but he still improved over 5 months. At his second episode, he was given antibiotic and his healing was MUCH faster- a couple of weeks. His third episode was more drawn out and complicated with chronic OCD that we hadn't recognized as such. But, he was better after treatment and about two months. So, it doesn't have to be permanent. My son responds very quickly to treatment though. It depends on the child and the treatment.
  7. Sean McGhee, M.D., was my son's doc at UCLA and he is now at Stanford, Packard Children's Hospital. New Patient Appointments Parents and Patients (888) 275-5724 Sees Patients At Medicine Specialties 730 Welch Rd 2nd Floor Palo Alto, CA 94304 (650) 497-8841 Mailing Address Pediatric Allergy and Immunology 269 Campus Drive CCSR Building, Room 2115 MC 5164 Stanford, CA 94305 (650) 498-6073 Fax (650) 498-6077
  8. Hi momcap, my son has had this half his life now- since age 6 at the onset of PANDAS. We tried NAC. Didn't do quite the whole dose as per the study at Yale. What we did try didn't work for my son. We may try again. But he had low dose IVIG Jan. 6 of this year. For the first time, he stopped pulling for two months. He is pulling again. Eyebrows gone again. We are working on insurance denial appeal for high dose IVIG. Dr. K, in an email response to me, said that trichotillomania responds to high dose IVIG as it is a sign of immune dysfunction.
  9. To be honest, it is best to provide them as little information as possible regarding the diagnosis. This should not be the focus of their attention. The team should be focused on the child's needs, no matter the diagnosis. You really only need one piece of documentation, and that is a letter from an M.D. stating that the child suffers from "XYZ" and the child will need the following written into an education plan. Forget about educating them on the specific diagnosis. It doesn't make the child's needs any more/less relevant. Been there, done that. They don't need the details. If they requir
  10. Hi, and welcome. While chiropractic treatment may help make your child feel more relaxed, I wouldn't put my money there. You're going to need your $$ to be frank about it. I did, however, pay for hour long massages for my son when he was at his worst with severe motor tics in his neck, shoulders, and trunk. It helped him during the worst of it. I am not sure what bloodwork was ordered, but imagine it is the ASO and anti DNAse B - markers for Streptococcal infection? Some of us manage with antibiotics only, some IVIG only, some antibiotics followed by IVIG, and so on. So, it reall
  11. Hi everyone! Have read some very encouraging updates but breeze through and don't have time to post as I have switched my obsession to something else Actually trying to focus on just being happy with how my little boy is doing. Thought I would give a quick update on us too. Just visited pediatrician to check on status of pre cert for two to three IVIG treatments locally with him, rather than travelling. So, this was second request (not appeal) for IVIG and this was denied, of course. First, low dose, covered in January. Docs want to do high dose to try to stop the trichotillomania. So,
  12. It's maddening, isn't it? Dealing with doctors? I can relate to your experience (as many of us here can). The first doc we took my son to, in a complete panic because my son woke up one day with SEVERE and debilitating symptoms. He said he didn't see a thing wrong with our son, but we "need to see a psychiatrist." Wanted to throttle the guy.
  13. Wow! Great news! So happy for you, and hoping for lasting healing.
  14. My son was supposed to do an MRI but not to diagnose PANDAS, as our neurologist said it is not fine enough to detect those changes. She wanted to rule out other conditions. A PET scan would detect changes, but risk is not worth doing. My son completely freaked out when he saw the MRI machine and had a complete meltdown. We could not get him to go in. We won't be doing any imaging.
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