nicklemama

We have a brand new Yahoo Group.....MichiganPANDASSupport. We are a very small group and the Yahoo group is brand new. We were emailing before. I'm a new member of a few weeks and I've learned a lot. Come join us. Cindy

I received an email from Dr Cunningham last week that they are backed up 7-8 wks from the time they receive the blood. She said they are basically slammed w/ new cases, including ours. Seems the word is getting around. Cindy

Yes! torticollis and plagiocephaly. No helmet. Head went back to nearly the proper shape. Cindy

On Friday night, I desperately sent Dr T a lengthy email at his website and called his office number and left a short message. He sent me an email back giving me a time frame to call him on Sat morning and that's how we started. Took DS6 in on Monday to ped's w/ the list of blood tests to run and abx. Started abx. Waiting on results. Cindy

We are working on a consulting basis w/ Dr T and going through our own pediatrician who is following his recommendations. There are fees for the consultation but it beats traveling several states away. I highly recommend consulting w/ one of the four PANDAS drs, if you are unable to travel. Don't go it alone w/ your own pediatrician if they are unfamiliar w/ PANDAS. I know Dr T and Dr K do phone consults. Don't know about the other two. Cindy

We started the OT for sensory processing disorder in June of this year, before we knew or suspected PANDAS. My son has turned into a sensory seeker. He's hyper now and has a hard time sitting still. It has helped. He has "exercises" was use daily at home, before and after school and he has been taught things he can do in his seat when he feels he's getting wiggly. Our insurance is paying for it. The OT coded it as some sort of developmental problem. Cindy

YES!!!!!!!!!! My son was diagnosed Aspergers this past Monday after a full neuropsychological evaluation. I asked the dr over and over how he could have been normally developing for 5y9m and then suddenly go downhill. He felt there were signs all along. This all started last Oct after receiving the seasonal FluMist. We've had the typical wax and wane symptoms. Better in Dec, Jan, Feb, explosion in Mar. Better this summer. A little over a week ago I told my husband it was starting up again. Right now, he has all the signs and symptoms of Aspergers. Tics and ocd's. Talking in circles. Well, I could go on and on but I know you all have the same experiences. My son was also diagnosed as seriously depressed on Mon. A 6y9m boy! He is quite bright and he is very frustrated and unhappy w/ his loss of social skills, and coordination. His gross and fine motor skills used to developmentally ahead. In the last month or so, he has started bumping into things, tripping, stumbling and dropping things. Last week he told me he was nothing but a clumsy weirdo. Today, I can happily(if you can even say that when your child has a serious illness) say that after a consult w/ Dr T, he has a tentative diagnosis of PANDAS pending a battery of blood testing and a round of Biaxin. I feel like we are finally getting somewhere. Cindy

Steph- I could have written your exact same post. I don't have any thing to really offer you. We are trying to get a diagnosis of PANDAS for our son. Waiting on our CamKinase kit right now. We just returned from DC where my son was given a complete neuropsychological evaluation. He was diagnosed Aspergers, very high functioning, mildly affected. He's about to turn 7. This all started on year ago this month. Just wrote this to let you know you are not alone. We, too, are struggling. Cindy

My DS's issues all started last Oct after being given the FluMist. He will never be vaccinated again. Cindy

I contacted Kathy Alvarez in Dr Cunninghams lab. She responded promptly. They are not sending out kits right now. She said they were swamped w/ new clients and in the middle of revising the consent form. It has to be approved by the University so there will be a wait before the kits will be mailed out again. Thank you all for the information. Cindy

My DS was a licker. Licked everything. Now, he has stopped the licking and he's smelling things. Tonight, I handed him the forks to place on the table. I caught him putting them up to his mouth. I asked him not to lick them. He replied...."Don't worry Mom, I'm just smelling them". We had him evaluated for Sensory Processing Disorder in May. He was diagnosed a sensory seeker and is receiving OT for it. These "sensory issues" cropped up after what I believe was his first episode last fall. Now I see they may be compulsions. Cindy

I need to know how to get a Cam Kinase kit from Dr Cunningham. I'm not going to get any help from my ped. I am going to have to find a new ped somehow. I took him to my ped 3 wks ago and requested strep titers. She agreed to do the ASO titer plus some other bloodwork. I called a week later and was told all normal. I picked up the written report Mon and the ASO titer was not done. I called the dr's office yesterday. The phone call was returned today telling me the lab made a mistake and did not run the ASO titer. I will not be charged. I can take my DS to the ped's office for a repeat blood stick or the lab will send a representative to our home to draw blood. However, our ped really doesn't think he needs to have the ASO titer since all the other results were so good. I feel defeated and I've barely begun this journey. Cindy

Thank you so much for the information! Cindy

Anyone have a recommendation for a PANDAS friendly dr in SE MI? It looks like I'm going to need one. Feel free to email me privately, if that's an option on this forum. Cindy

Thanks for the suggestions. I'm waiting on a call back from ped's office. I called the lab and they won't speak to me about it. Said I'd have to take it up w/ the doctor's office. Cindy

I know many/most of you have been dealing w/ these things longer than me but here's the aggravation. Took DS to his ped on Sept 15 to talk to her about my suspicions of PANDAS and get her to run titers. She agreed to do the ASO titer and some general bloodwork like liver, kidney, thyroid function, plus some other more routine stuff. I was told I would receive the results. I assumed (you know what happens when you assume?) it would be mailed to me. I waited two wks, then called. Informed they will not mail anything do to HIPPA laws. I would have to come and get it. OK. Well, what does it say? Everything is normal. A letdown for us in pursuing the diagnosis. I picked it up today. Imagine my surprise to see that the strep ASO titer was not done. An elaborate EBV (Epstein Barr-mono) testing of three or four subtests was done instead. ARGHHHHHHHHHHHHHHHHHH. I had my DS6 stuck w/ a needle for nothing. The only good news is (if you call it that) we still don't know if he has antibodies to strep or not. We are leaving Friday for suburban DC for a two day neuropsychological evaluation. When we return, I am contacting Dr K in Chicago and requesting the kit from Dr C. We have no insurance coverage for any of this since we have an HMO but we are going to find a way in order to help our son. In the meantime, DS6 is have a flair up of symptoms this past week. We took him to Urgent Care on Sunday w/ a headache, off and on sore throat, low grade fever. Was told he has a virus, its going around, they've swabbed 20 kids, no strep so they aren't going to swab him either. It never ends. Cindy

I give DS Coromega Squeezers in lemon lime. They have a lot more Dha and Epa than what you find in the gummies. I order them online.

I use 0.5mgs on DS5. It knocks him out in about half an hr. I buy the chewables at Trader Joes.

My DS does not have a PANDAS diagnosis. I have just begun pursuing it. He started Listening Therapy, an at home therapy, 1.5wks ago, at the suggestion of his OT. He was diagnosed w/ SPD-sensory seeker in late May and started OT in mid June. He also some difficulties w/ crowds and loud noises. Covers his ears, gets really hyper and upset. Aside from the special headphones, its not expensive at all. We rent the CD's from the OT clinic. They charge $10 for each two wks of the one cd usage, then you trade the cd in for the next one. The OT evaluates and determines which cd's would be best for your child, based on their symptoms. I can't say if its working or not, but my DS6 says it very calming to listen to and he likes it. My dh thought it was annoying when he listened.

Yes, our appointment is w/ Dr Federici in Virginia.

We are in Michigan. Chicago is 4.5hrs away. I am considering the Cunningham test. Will it give us more credibility if its positive? Does she/will she do it directly? My family lives in Oklahoma and we will be there in Dec. ASO titer will come back any day now. It was done a week ago. My son never had ANY of these problems before he took the FluMist. As a Russian adoptee, we looked for all kinds of things and kept our eyes out for anything, due to his background. He was as regular a kid as they come. Our ped even remarked at his 5yo well child check how lucky we were and that he had dodged a lot of bullets. Would that ever come back to haunt us. He was rarely sick, ever. Couple of ear infections. Developed seasonal allergies around age 4. Went two yrs w/out seeing the ped, except for well child checks because he just never got sick. He was social, outgoing, lots of friends, adults always commented on how well behaved and mannered he was. He snow skis, swims, loves gymnastics. We camp, hike, bike. Took him everywhere. He could adjust and adapt to any situation. Now I am afraid to put him on an airplane. I don't even know what his reaction might be. He was 5y9mo when he got sick last Oct. I remember the Sat morning when he came downstairs and it was all different, two days after the FluMist. He was sick, running a fever and went into a tantrum like we'd never seen before. He's 6y9mo today. We are w/in a couple of weeks of when our lives were turned upside down last yr. I reported to VAERS last yr the reaction to the FluMist. Thanks to everyone who has replied. I finally feel like I am on the right track and have an understanding of what has happened to my son.

I'm new here and my DS does not have a diagnosis but all his symptoms started after he received the Flumist last Oct. I'd be VERY careful.

I am new here. Short as I can background, I believe my DS has PANDAS. Started last Oct after being given FluMist. Don't know if he had concurrent strep at that time or not. Never tested. He woke up two days after Flumist sick and not the same boy. He's never really been the same since. We had a brief respite of symptoms from Dec to Mar, then they all came back again, even worse. He's seen child psychologist(during our period of respite from symptoms) who told me he had anxiety and a high IQ. He's been seeing a therapist since last Nov for his behavior and terrible separation anxiety. Things got so bad, I requested a referral to a child psychiatrist. He was put on Celexa. Made him suicidal. Weaned off and started on Lamictal, which has really helped w/ his behavior. He was angry, irritable, prone to tantrum/rages, full of anxiety, ocd's. Still has some separation anxiety but its better. I took him to see a ped neurologist last Nov. She found his neurological signs to be normal and told me all I needed to do was be firm and consistent in my parenting. Wow, was I underwhelmed. He also suddenly developed sensory issues which ramped up in the spring. He was evaluated by an OT who diagnosed him w/ SPD- sensory seeker. He also developed a sudden inability to tolerate loud noises and crowds. He is currently receiving OT twice a month and we just started him w/ Therapeutic Listening 1.5wks ago. He has an appt to see a neuropsychologist in Oct who specializes in internationally adopted children. We've waited four months for the appt. It was made before I realized he might have PANDAS. My DS was adopted from Russia at age 6 months. He's been a happy, healthy, well adjusted little boy until the flumist. We had come to believe that maybe the flumist was a fluke that didn't cause anything but triggered underlying problems he might have had from his background. Don't know what, if anything, the neuropsych thinks about PANDAS but I will be discussing it. Its an out of pocket two day evaluation. He's doing great in school. Holds it all in until he gets home. He did show ocd's in kindergarten last yr but his teacher didn't realize it. Cleaning, cleaning, cleaning. She loved it. I took him to his pediatrician last week specifically to tell her I thought he had PANDAS. She's concerned. Not totally convinced. Doesn't know much about PANDAS, but drew blood for the ASO titers, plus thyroid and liver(due to med he's on). What would be your next step? Where would you start? I have an HMO. If its not in network and referred by our ped, its out of pocket. Thank you Cindy