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madmgirl

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  1. Did you also post this on the PANDAS forum? There are some very knowledgable minds on there that could help lead you in the right direction.
  2. I don't know what to think. I got a call back from a member of one of the PANDAS specialist teams. I told him a brief history of ds and he doesn't seem to think it is PANDAS since there was not a sudden onset. He didn't just wake up one day abnormal. Said it may not have anything to do with his symptoms. While he doesn't really have your textbook tics he does have some vocal tics sometimes where he will repeat a sound over and over until we stop him. Which most of the time we are able to do. He has some what I believe to be OCD behaviors - can't have hair (any kind) near his mouth, can't sit at the table unless it is cleared, has to have a certain door shut before being able to play games, can not use the bathroom by himself if there is a fire alarm near. He has been somewhat hyper since he was able to walk.I remember it getting worse around age 4. At the time I just thought he was reacting to his new sister that had just been born. He was hard to potty train but otherwise seemed developmentally normal. In preschool he began to show some signs of disobedience and inattention. By the time he got to Kindergarten he was having full out meltdowns on a bi-weekly basis. I was working at the time and mostly had to deal with this over the phone. When he entered first grade in a public school system we had a traumatic reaction - meltdowns, tantrums, violence, unable to focus for more than a few minutes at a time. We went to the doctors at that time and he was said to have ADHD and we put him on some medications. That was a disaster! He had horrible reactions to all the stimulants and some were downright scary. He was worse so we took him off all meds. He was ultimately put on "home schooling" until we could agree with the school system on how to handle him in the educational setting. He now attends a special education program that has helped him tremendously. Fast forward to today - I changed pediatricians to get some answers after the school testing came up that he was PDD - or possible on the spectrum. His teacher is also concerned that he may start to get behind due to his focusing issues. He has difficulty accepting "no" or change and he has meltdowns or serious reactions at least on a weekly basis at home. So this doctor ordered blood testing and came up with the strep levels. He was put on aug. for a few weeks - we did see him looking better physically and just in general in a better mood but no major difference in his behavior. After the abx we were retested and his antistrep was 400 and his antdnase sp? was 960. So she reccomended that we seek a neurologist. That landed me with Dr.L in Maryland who is just now taking new patients again. I am torn between going to a phsychiatrist to have him neurophsych eval done again or should I go straight to Dr. L? Has anyone else had symptoms that presented like this? Does this sound to you like a possible PANDAS case? Any thoughts would be appreciated! CB
  3. Thank you. Hopkins is not high on my list.
  4. So I have been trying to find a neurologist to get started on a treatment plan. Just got an appt. with Dr. Latimer and found out she doesn't take insurance so I started to call around. Turns out most of the Dr.'s that are PANDAS educated in our surrounding area do not take insurance and range anywhere from $500-$1500 to get in the door. Now I am willing to do anything for my son but we have amazing insurance! Is this standard for everyone? Has anyone had any luck with Childrens or Hopkins? I have been trying to get them to call me back for a couple months now. Any advice is appreciated. CB
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