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michele

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Everything posted by michele

  1. Dr. Jan Kriwinsky Beechwood, Ohio. http://www.pediatricplace.net/
  2. What are you all doing for attention and impulse for PANDAS kids? My son is on Intuniv 3 mg a day but still is acting impulsive and his attention and short term processing is slow. I just wish there was a better med to try but all stimulants made him manic and he has severe ADHD. If you read "Saving Sammy," you might recall that Strattera, a newer non-stimulant ADHD drug, was added to Sammy's regimen toward the end of his PANDAS recovery. I just exchanged a couple of emails with Beth Maloney, and Sammy is still on a low dose of Straterra today, for what that information is worth.
  3. Lately several leading Dr's and several PANDAS parents are reporting their Dr's and psychiatrists and neurologists are seeing a correlation between PANDAS after strep and a reaction in the body called Conversion Disorder where the mind plays games on them and they are not able to walk or they may loose muscle control or stop eating or can't stop bark. it causes the brain to take over and make your body have compulsions and can even make you think you are blind and can't walk..and so on..it's real to the person but there is nothing really wrong with their body..it is a mental thing. It goes alo
  4. My son was on Omnicef 250 mg x 2 day for about three years. He did get some bowel issues but it could have been related to Strattera he was on too. It was not C Dif but he had a lot of trouble with pooping and smearing it on things and encopresis so we stopped both the Omnicef and Strattera. He did have a bad episode over the summer with hand foot and mouth and OCD symptoms returned and tics because his ASO was high. The ped put him on Amox clav for 12 days 800 mg daily. Then he went on Pen vk 250 x twice a day. He is still having issues and I would love to try azith to try to get rid of the r
  5. Hey,

    Have you heard anything about the white pages that were supposed to come out in Nov.? My Dr. friend Robert is supposed to call you to get more info about the immune reaction and IVIG. He has done it 3 times at Cleve Clinic and symptoms are back again. They still don't believe PANDAS at CC in immunology and sent him on his way saying it was just viral induced tics. He's seeing ...

  6. Be careful. Our district doesn't believe in PANDAS by the way they have treated me in the IEP. They are threatening me over his diagnoses being too many and what is next since he has everything under the sun? I am worried. If you know too much they will acuse you munchausen by proxy.
  7. Mediation bothers me because the school has their attorneys and you can sign away your due process rights with language you can't understand and get nothing in return. Have you done mediation and seen it work? Have you heard of facilitated IEP meetings? I am going to look for a ed lawyer that works on a sliding scale. I think we have thrown too many diagnoses his way in the IEP. I know too much about the disibilities and he has seen too many Dr's. I just wonder where the superintendent will go next. I've been accused of MBP by doctors- well not formally accused- but its been talked about b
  8. Mediation bothers me because the school has their attorneys and you can sign away your due process rights with language you can't understand and get nothing in return. Have you done mediation and seen it work? Have you heard of facilitated IEP meetings? I am going to look for a ed lawyer that works on a sliding scale. I think we have thrown too many diagnoses his way in the IEP. I know too much about the disibilities and he has seen too many Dr's. I just wonder where the superintendent will go next. I've been accused of MBP by doctors- well not formally accused- but its been talked about b
  9. Our district spec ed director went off on me in the IEP meeting and was shouting off all my son's diagnoses and said what will it be next, he has everything under the sun. Has everyone been accused of munchausen by proxy? I feel this is what he is accusing me of? Does anyone know what the freedom of information act regarding munchausen by proxy is? I feel I have given them all his diagnoses and Aspergers was after the PANDAS and Tourettes w ADHD. Now they think I am asking for too many services? They say they don't see a need for the help. He has an IEP but it has many loopholes in it. I brou
  10. Has anyone ever tried this program http://www.learningrx.com/akron-bath/success-stories.htm'>http://www.learningrx.com/akron-bath/success-stories.htm to help with school learning? http://www.learningrx.com/doctors-only/7-the-autism-spectrum.pdf'>http://www.learningrx.com/doctors-only/7-the-autism-spectrum.pdf http://www.learningrx.com/ It is supposed to help ADHD, and spectrum disorders to learn and process material better. Also I have heard this week of a program called Brain Balance http://www.brainbalancecenters.com/. A mom traveled to Georgia from OH for the summer to do theBrain Ba
  11. My son is now 8 but had his first strep PANDAS epsiode at age one year and one month. Now that was in 2003 and Dr's suspected PANDAS but did not know what to do other then give antibiotics to clear the infection. his titers were elevated but his EEG and CAT was normal. He had blinking, finger chorea,irritability, not eating, not sleeping, hyperness. As he continued to get sick his symptoms kept returning and lasting for about 5 weeks post infection. He seemed developmentally on time. Then at age 4 we gave more immunizations and a flu shot and he became like aspergers and adhd full time. The OC
  12. http://www.schoolnursenews.org/BackIssues/2003/0903/pandas0903.pdf If you PM me I have alot of info on IEP. We have had PANDAS since before he started school on an IEP in kindergarten. I can give you some tips. Ours is under OHI. He gets Math and Language arts with the tutor 3-5 days a week for up to 50 min a day. Lots of accomodations like extended time, not counting for handwriting, testing in small group, OT help, social skills help, preferred seating, work breaks, organization, daily journal between school and home. I could pull it out there are more. It has been a work in progress for fo
  13. My son has visual perceptial motor delays. He tests several year behind age level in the Berry VMI testing. We do Visual motor training exercises in OT and at home. He also wear glasses because of eye strengthing not for vision. One eye is stronger then the other and the glasses help to strengthen it. His vision tests good. His use of lines and spacing have always been a challenge. He sizes letters differently. Maybe this is part propriosensory. Word searches, hidden pictures, copying shapes, geoboards with rubberbands, have helped. He does something called Brain Gym. These are activities to w
  14. Yes my son had his first episode at age one with tics and chorea but then went on to develop on time with talking and walking. However after shots at age 3 he started to regress and developed ADHD and impulse issues. Then he started having compulsions and tantrums that looked autistic when we did not go along with him. So yes I would say with each exacerbation his symptoms have gotten worse and his baseline has gotten back to a little less then typical. He now on a daily basis has motor delays, propriosensory issues and ADHD along with moods. When he is in exacerbation he is worse and more com
  15. The longer my son has had PANDAS (7 and half years) the more his behaviors have become aspergers like. Now we are treating his sensitivities with social skills class by a liscenced psychologist bi weekly. He does get OT twice weekly for the motor delays and sensory. His ADHD is always present now also. He has tics and compulsions which could be tourettes since they are always there. I would say alot of these are comorbid symptoms of the PANDAS. Does your child have the stuck fixations and meltdowns? My son gets stuck on ideas and tantrums when he doesn't get his way. The only difference is he
  16. My son gets OT twice a week in 45 minute sessions. It has been very helpful for his large and small motor and visual motor delays. He also has propriosensory issues and the activities have helped with his sensory system and his balance. We have a very good OT privately who really works on specific skills and and he also gets it at school. Our OT works from a plan of care which really sets him up for success. They play alot of games and he really enjoys it. Dr. Murphy suggested OT or PT when we went to see her a few years back. I am glad she did. We are in the process of getting PT started for
  17. Steph, I can relate I will PM you. We are living the same ###### with the opposition and rages, misdiagnosis and unknown treatments for years. My son also carries the Aspergers diagnosis if it is truley ASD or PANDAS rage not sure but the behaviors are the hardest symptom to deal with. It can wreck havic on your home and marriage and the siblings. I will let you know what we are doing. We have head the same holding it together at school and losing it as soon as he walks into the door. However he has slipt a bit at school a few times and they may see more then they are willing to admit. M
  18. Hi. I was wondering how you and your family had been. Where did you end up going for IVIG? Did he do better for awhile? Sorry things have gotten worse. Please keep me posted. I hope things improve for you all soon. Michele '
  19. Is anyone on the zith pill form? My son is 70 lbs. I just want a Dr. to work with our local Dr. We have traveled and we never had that consult happen before and then we were left to nowhere but to guess. He is on Pen vk 250 x 2 day. During flair ups he did Amoxicillin Clav 400mg x 2 day. He still has a head shake but his feet movements are better, not gine but less.
  20. How old is the child and how much does he weigh? I am going to take this back to our ped. Does Dr. B phone consult? Maybe he could talk to our ped.
  21. How do you give a 30 day course of zithromax? How many per day and what is the strength? How many milligrams is it? Michele
  22. I have had rheumatoid arhtritis since I was sick at age 30 with strep. My daughter got scarlet fever the same time with strep. Currently my RA is out of remission and I am on a z pack for a sinus infection, predisone, plaquinel, shots of enbrel weekly and methothrexate. My inflammation markers keep increasing. I am thinking it is stress related. I don't know what the tie is to my sons PANDAS symptoms but I am sure there is one. He came down with PANDAS the exact time I came down wih arthritis. Maybe it was the same strain of strep. I had strep alot as a child, my daughter was a chronic strep c
  23. Dr. Nevada Reed at Kids Link. However she does not take insurance. http://kidslinkohio.com/ Dr. Sunjya Schweig at Hill Park Medical Center in Petaluma CA (a little north of San Francisco) is a functional medicine pediatrician and diagnosed my son with PANDAS last year (as well as celiac and a whole bunch of nutritional issues related to leaky gut). His office is doing IVIG infusions as per Dr K's protocol, and they are very kind and progressive and seem more affordable as well, an extra benefit.
  24. Dr. Nevada Reed at Kids Link. However she does not take insurance. http://kidslinkohio.com/ Dr. Sunjya Schweig at Hill Park Medical Center in Petaluma CA (a little north of San Francisco) is a functional medicine pediatrician and diagnosed my son with PANDAS last year (as well as celiac and a whole bunch of nutritional issues related to leaky gut). His office is doing IVIG infusions as per Dr K's protocol, and they are very kind and progressive and seem more affordable as well, an extra benefit.
  25. Hey. I live in N Canton. How about you? Is your child TS or PANDAS or both? Id love to talk. 3303050503 05 3309336859

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