Healingthedude

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 much they don't get it. Anyway, I was looking at the TS site here-maybe I will post to get input there as well and hopefully have a Drs note in the next day or two. Thanks for all your input-makes me feel less alone in all this.

Thanks. this is a good place to start!

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 of his school aides may be a carrier of strep and that is why we cant get rid of the tics and OCD since they switched all the staff around last summer. Does anyone here have a good note to address PANDAS with the school, that I could forward to his Docs to modify. They are very busy, but willing to help. Also, has anyone ever requested the school aides of a child with ASD/PANDAS to get tested for strep (ASO/Anti DNASE). I don't want to be unreasonable, but this has been going on since July and making life very unmanageable. Thanks for your help. Carolyn

Autism, Sensory Integration Disorder, ANxiety, Constipation, PANDAS over here.

This is an awesome conference. I am definitely going!

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 too or just back to IVIG? I think we need ABX. Carolyn

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 was hoping to do a 1.2 or 1.3g/kg in one long IV (8 hours)- and see if its easier on his sensitive system. I also open to doing the 1.2 IV over 2 days. Having trouble deciding what to do. His immunologist does the same protocol for everyone 1.5 over 2 days every 2 months. His Dan Dr said it doesnt matter if its one long IV or over 2 days. I think my kid is too sensitive. I don't want to throw away the whole school year if there is a gentler way to achieve the same thing. Any input or names of Drs who treat more sensitive kids appreciated.

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

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.)

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 overwhelms the child and the family. I don't think this breadth of symptoms - and extreme presentation - is at all common for non-PANDAS OCD. It's literally like their brains are on fire, and every aspect of their personality is affected: they become unrecognizable. Like your dd, our son could not even attempt CBT during exacerbations. Like trying to extinguish a bonfire with a squirt gun. Don't know if specific types of OCD are more common in PANDAS? For our son, it was crippling contamination fears and anorexia (along with continuous pacing in circles). We concur with worried dad too all of the following happen over the last 2 months: "the Exorcist syndrome." We certainly saw this with our son: overnight explosion of so many symptoms (OCD contamination fears, tics, rages, hours-long crying jags, urinary frequency, extreme sensory defensiveness, cognitive fog, pain / muscle weakness, etc.) that it completely overwhelms the child and the family. I don't think this breadth of symptoms - and extreme presentation - is at all common for non-PANDAS OCD. It's literally like their brains are on fire, and every aspect of their personality is affected: they become unrecognizable. My son has the brain fog first, then hears voices, up to hour long tantrum, self injurious at times -then snaps out of it and is totally alert and normal. Very weird. He has not been his usual personality at all the last 2 months.

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 overwhelms the child and the family. I don't think this breadth of symptoms - and extreme presentation - is at all common for non-PANDAS OCD. It's literally like their brains are on fire, and every aspect of their personality is affected: they become unrecognizable. Like your dd, our son could not even attempt CBT during exacerbations. Like trying to extinguish a bonfire with a squirt gun. Don't know if specific types of OCD are more common in PANDAS? For our son, it was crippling contamination fears and anorexia (along with continuous pacing in circles). We concur with worried dad too all of the following happen over the last 2 months: "the Exorcist syndrome." We certainly saw this with our son: overnight explosion of so many symptoms (OCD contamination fears, tics, rages, hours-long crying jags, urinary frequency, extreme sensory defensiveness, cognitive fog, pain / muscle weakness, etc.) that it completely overwhelms the child and the family. I don't think this breadth of symptoms - and extreme presentation - is at all common for non-PANDAS OCD. It's literally like their brains are on fire, and every aspect of their personality is affected: they become unrecognizable. My son has the brain fog first, then hears voices, up to hour long tantrum, self injurious at times -then snaps out of it and is totally alert and normal. Very weird. He has not been his usual personality at all the last 2 months.

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.

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 behaviors as well. Rages, OCD, staring spells, eyes shifting back and forth quickly, oppositional defiance etc. Things were already hard and they got harder (with the exception of the tics) So here is my dilemna: I think the high dose is too tough on his sensitive system even though it worked on the tics. It made it almost impossible to function at school with kids etc. The low dose was too weak to treat this last bout of PANDAS. He has a lot of trouble with his gut and tolerating antibiotics. We have not done Igenex for Lyme because my son was doing monthly IVIG which would skew the results. My son is now asking to go for IVIG because it made him feel better at the low dose in the past. SO here is what I need to decide: Do we wait another month and do Igenex test for Lyme? (the tics are starting to come back now at week 7) Do I follow the lead of several auto immune kids parents here and ask Dr to slowly ramp him up from low dose to high dose treatments monthly? (which Dr does this protocol?) 1.1, 1.2, 1.3, 1.4, 1.5 or Do we suffer through 3 HD treatments every 8 weeks that shock the immune system over 6 months but hopefully reverse the autoimmune process with the risk of lots of regression? Definitely need some help here. Appointment w/Dr B on Friday to discuss, but I would love your input. Thanks Carolyn

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.

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.

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.

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 great results since Feb 09 and no further antibiotics. We did try an IM ABX shot in June 2010 when he had a reexposure (off top of my head cant remember type-it began with a C-recommended by Dr T) Did nothing. Wondering if I should try the Bicillin again or is Augmenten prepared in any way that could bypass the gut? Thanks for all the input. We don't have any history of bipolar in either sides of our families. Just Aspergers on my husbands side and some anxiety.

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 (1200 a day) OCD came back, Got progressively worse this Fall. Moved from lo dose IVIG to high dose Oct 10. Since beginning of October (actually pre treatment) we are seeing very dark side. Depressed, irritated, angry. Daily tantrums at school, like he is hearing voices in his head. Starts by a blank staring off - then yelling No,No, leave me alone!!!!! then some groans and screaming and biting his arm. through the skin sometimes if he is really mad. Can go on for up to an hour or two if people around him react. when tantrum is over he snaps out of it and is kind of normal and present again. Much more alert than before episode. I can't decipher if something bad happened at school that he keeps reliving or if he is having some really bad thoughts and maybe its part of PANDAS? Will more high dose IVIG help heal this (or was it too strong?) local Drs are suggesting Risperdol or Depakote. Really at a loss for what to do. Close to pulling him out of school if that is the cause. But if this is common for PANDAS, then what do I do? thanks for any help.

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.

Great news. Did the PEX totally get rid of the chorea? Do you do Low dose IVIG or High dose? Thanks, Carolyn

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

This is awesome. Thanks so much! Wish me luck tomorrow.

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