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Healingthedude

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Everything posted by Healingthedude

  1. Thanks, everyone. I know it is bs what they are proposing to do. I have to be firm but respectful with my boundaries on this. I think there is a behavioral component, when demands are put on the child the tics get worse-thats why I am requesting them to teach- asking for a break, different ways to calm himself, ignore and redirect to work, offer more sensory breaks etc. I am just not going for the extinguishing the behavior with candy part. Just not gonna work as well as antibiotics Jeez. I need a Drs note to make it clear-they do not want to hear it from me. It's upsetting to see how
  2. Hi, My son's school called me in to implement a behavior plan to address his motor tics. They are currently at 500 plus per day. They want to give him a piece of candy for every 2 minutes he does not open his jaw/mouth- with a timer asking-did I keep my mouth closed? If he keeps it closed he gets the candy, if not they reset the timer and try again. I obviously know this is medical and have talked to Dr B about writing a note stating such. Drawing his attention constantly to the tic and trying to control it will likely induce anxiety and make it worse. We are also concerned that one
  3. Autism, Sensory Integration Disorder, ANxiety, Constipation, PANDAS over here.
  4. Hi Guys, Haven't been on in a while. Just got my Igenex Lyme results back for my DS 11 ASD/PANDAS. IgG Western Blot[- 41 + IgG Double Stars- 23-25, 31, 34, 39, 41, 83-93 IgM Western Blot 30 + 31 IND 39 IND 41 ++ IgM double stars- 23-25, 31, 34, 39, 41, 83-93 The test says he is negative but all the double stars may have clinical significance. Can anyone explain better? Going to see Dr B in 3 weeks-but my sons tics and brain fog are really bad. They have been ramping up for 3 days now-tics began 21 days post IVIG and I want to determine if we should treat lyme
  5. I am taking my son in for his 2nd HD IVIG tomorrow. Last time we did the 1.5 split over 2 days. It got rid of the tics but he has had a really hard time behaviorally and not been feeling great. Really hard to function at school. Tantrums etc. I was wondering if anyone is ramping the kids up from the 1 gram/kg to 1.5 gram/kg slowly in a single IV over a couple of months. (till they adjust to the 1.5) My son did beautiful on the 1 gram/kg monthly for a year and change but it stopped working last summer and his symptoms came back. We did HD in October and it seemed too strong. I
  6. Hi, We have United Health Care Insurance. (Choice Plus) Has anyone been reimbursed for Igenex testing? How much of the 600-800 did you get back? We have met all our deductables for 2010, so I am debating if I should take my son in the next few days for this. thanks for any input. Carolyn
  7. UHC has been good about covering IVIG for us. We go to a hospital that is in network for the infusion, then we only have to pay for the deductible. (we only get 60/40 out of network.)
  8. From what I've read, heard from others (like local parents of kids with "classic" OCD), and been told by some PANDAS docs, the severe emotional lability is a distinguishing aspect of PANDAS vs. traditional OCD. In the extreme, docs like Dr. T and Dr. K describe the PANDAS symptom explosions as "the Exorcist syndrome." We certainly saw this with our son: overnight explosion of so many symptoms (OCD contamination fears, anorexia, tics, rages, suicidal talk, hours-long crying jags, urinary frequency, extreme sensory defensiveness, cognitive fog, pain / muscle weakness, etc.) that it completely ov
  9. From what I've read, heard from others (like local parents of kids with "classic" OCD), and been told by some PANDAS docs, the severe emotional lability is a distinguishing aspect of PANDAS vs. traditional OCD. In the extreme, docs like Dr. T and Dr. K describe the PANDAS symptom explosions as "the Exorcist syndrome." We certainly saw this with our son: overnight explosion of so many symptoms (OCD contamination fears, anorexia, tics, rages, suicidal talk, hours-long crying jags, urinary frequency, extreme sensory defensiveness, cognitive fog, pain / muscle weakness, etc.) that it completely ov
  10. Thanks for the responses. LLM I am curious how you are treating the Lyme. Specific ABX that are better for Lyme than strep? Dr B said the half life of IVIG is 6 weeks. You have to wait a full 3 months after IVIG to get accurate Lyme testing. With how expensive the Igenex testing is I would want it to be as accurate as possible. I hope to hear back from a few of the parents whose kids are immunodeficient. like the idea of slowly increasing the IVIG dose monthly so the child doesnt have the extreme reaction.
  11. HD-IVIG vs LD-IVIG OK, my 10 yr old son who has ASD/PANDAS/immunodeficiency had his first HD IVIG (1.5g/kg) on Oct 9. 7 wks ago. We are due for another this Friday-Dr B does HD every 8 weeks Previously we had been treating PANDAS/Immunodeficiency with LD-IVIG (1g/KGkg) monthly for a little over a year very successfully. Life was the best it had been ever. We had a re exposure in June 2010 and symptoms were off the charts again until Oct. (4 months very bad after a year and a half of bliss) The HD IVIG beautifully got rid of the tics within days but we have seen multiple negative
  12. Where is the NJ support Group? I got an email about one in Tarrytown NY this week. OK sorry, I was too obsessed with getting rid of my sons PANDAS to play the game. You know your a PANDAS parent when: You are formulating questions to post on this forum in your sleep . Your child's teacher calls and announces they have counted 1200 facial tic movements today on the golf counter and it is only lunch time. You have to book Disney vacations 3 days before you leave because you never know if your kid is gonna be able to handle it or not until the last minute.
  13. My son has autism and PANDAS. This test is usually done on kids with Autism as an indicator of brain inflammation. Many kids with autism have the IgM come back positive. (not that its good, but not uncommon) My son was positive. If you have both IgM and the second marker as well- I believe it indicates you have a very similar brain inflammation and activity as a child with Landau Klefner Variant. (seizures and inflammation?) I believe it helps the doctors determine treatment and further testing I think most DAN Drs could interpret this test for you.
  14. Oh, Best part, Dr B takes our insurance. $45.00 copay per visit :)

  15. I have heard good things about Scott Smith over the years.

    I also like Dr B in CT who is another hour drive past Dr T.

    We live in NJ and go to Dr B.

  16. My son has autism and PANDAS. I do recall his DAN dr saying not to give him gas for dental procedures due to a genetic issue that effects many kids with autism. Gas and certain anesthesia can cause major regression for my guy. For dental work we give him a valium for anxiety and novacaine for pain. Also flouride can have a neurotoxic effect. We skip that treatment. We do not see regression with dental work.
  17. thank you for the many replies. When my son was initially diagnosed with PANDAS 2 years ago we did 4 IM bicillin shots (1 monthly for 4 months) It got rid of all the symptoms, especially the tics. Then he became resistant and it stopped working. We tried oral Zithro (did nothing and killed his gut) He does really bad on oral ABX. We see autism regressions for several months after one round ABX. They destroy his gut, gets colitis flares that effects his brain. Even with tons of probiotics and Diflucan to heal the gut it really effects him badly. We had been doing monthly IVIG with g
  18. OK. My DS 10 yrs old ASD/PANDAS (PANDAS since 2007-IVIG monthly since Feb 2009) has been having a daily event for the past month that is very disturbing and outside his normal personality. He is generally a very happy, loving, upbeat child. Loves to play, loves school, music, adventures etc. Very active (OK hyperactive, but happy) His main PANDAS features are high tics, chorea movements, verbal stimming, OCD. lo dose IVIG got rid of almost all of this so he just presented like an ASD child with major speech delay and processing disorder. Since exacberation last June.... Crazy tics
  19. We do a cocktail at bedtime- 1 capsule ZEN by thorne( combo gaba and L theanine), 1 capsule 5 HTP, 2 capsules magnesium, mixed in some liquid zinc. The combo is calming for my son. Melatonin eventually caused night waking for us too.
  20. Great news. Did the PEX totally get rid of the chorea? Do you do Low dose IVIG or High dose? Thanks, Carolyn
  21. Congrats and thank you for your story of hope. I am in the middle of the hard part with the rages and scratching and biting himself. So upsetting, and sitting IEP meetings with the school saying I am overreacting and asking for help too much. Maybe I should find another placement. Exhausting. Good to see that people do have remission and recovery stories and there is hope for us out there. C
  22. This is awesome. Thanks so much! Wish me luck tomorrow.
  23. Hi Guys, I have a 10 yr old DS with Autism and PANDAS. I have to sit an unexpected IEP meeting tomorrow due to my son needing to be restrained for a rage at school. I want to explain PANDAs to them and ask them to put some accomodations in place to help him calm down, transition better and deal with OCD etc. Can someone please send me some links to 1) explain PANDAS 2) discuss how it could affect or impede educational/social progress Thanks , Carolyn please send to: Healingthedude@aol.com
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