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Arrowhead

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Everything posted by Arrowhead

  1. Smartyjones-- We're live in suburbia, too. (My DS is a high school senior, undiagnosed and refusing all treatment, but his pediatrician and the other specialists we, his parents, have talked with all say that his symptoms are a dead ringer for OCD and very possibly PANDAS.) I hear you about suburbia. My son's high school is huge and full of high-achieving students; it is a diploma mill, really, and the counselling staff has been friendly but not responsive to my son's situation-- they are too busy writing letters of recommendation for all the high acheivers who are applying to very fancy colleges. Once an honor student, my DS is now failing out of high school because of his OCD symptoms. So, to soften the blow of all this, when my son is willing to listen, I tell him that it gets better after high school. The world opens up, there is less conformity, the kids who are socially powerful in high school no longer rule. And through the years, I've helped my son get involved in some off-campus groups in the nearby urban center during the school year and in a very healthy wilderness camp in the summer to expand his vision beyond the limiting atmosphere of his school. My son loves the friends he's made in these out-of-school situations and they and their families are some of his best supporters. Not sure of the ages of your kids . . . but I hope this helps!
  2. Update: Good news! After an hour-long phone consultation yesterday between my husband and my DS17's pediatrician, we've discovered that he (the pediatrician) is very much on board with pursuing PANDAS/PANS. He is willing to conduct blood tests, pursue various therapies, etc. So the next steps are to get our DS into the doctor's office and then to get him to agree to the necessary tests. The dear pediatrician (can I say DP?) is happy if we bring our DS in under any pretext. However, we think that our DS is so protective of his OCD compulsive behaviors that he is afraid to stop them. Also, it is possible that he is afraid that he is crazy and therefore reluctant to pursue therapy of any kind. So it is our hope that if he sees that the cause could be PANDAS/PANS, which is biological, he might relax a bit about treatment. So we feel that we need to proceed with caution, and the DP agrees, saying that if we sense any resistance, back off and try another time-- we don't want to close down our son's willingness to talk about this. I want to find the right articles and/or books to leave around the house for our son to find. Yes, Saving Sammy could work well. Good suggestion. The pediatrician was suggesting an article from Time magazine that he thought might have just the right tone (informative but not causing alarm). He is going to try and find it, but I am eager to locate it as soon as I can. Do any of you know the title and date of publication for this article? Our DS pretty well shuts down when we try to broach the topic of any of the difficulties he is experiencing, so we are hoping to find literature that does not push him any further into his cone of silence on this topic. And yes, I've ordered Beth's book and am eagerly looking forward to its arrival. Thanks for your helpful suggestions, everyone! I ride a rollercoaster of optimism and dejection. Today, after hearing my husband report on his phone conversation with the pediatrician, I'm feeling upbeat.
  3. Sorry-- another post. (I'm new to posting on forums, so am rather hamhanded here at first.) Joybop, is the Dr. T you mention Dr. Tanya Murphy?
  4. Thanks for your support! Our next approach will be to try to get blood tests done. We're hopeful that our son will see that he is sick, not crazy, as you were able to demonstrate to your son.
  5. Hello-- I'm new here-- and beside myself with worry. Our teenage son is undiagnosed because he refuses to be seen by anyone other than his pediatrician. He has just turned 17 and for about 10 months has been displaying some dramatic behaviors that are very similar to those described in "Saving Sammy." My husband and I have been trying to work with our son's school counselors and teachers, but because he can cover up his symptoms at school, they think that nothing is wrong with him save, perhaps, for a case of ADHD, which they think accounts for the sudden, complete decline in his school work. He is bright and sociable. However, we have to beg him to wash himself at the sink and brush his teeth. (He has not taken a shower for over four months.) At home he steps over imaginary walls, twirls, walks backwards, and has great difficulty crossing lines or thresholds. Getting out of bed and dressed is a struggle every morning. Going to bed is the same. On some days he eats and drinks nearly nothing because he cannot make up his mind what to eat. He has difficulty initiating work on his homework assignments, so does almost none of it. He's failing at school. Some days he is incredibly defiant at home but never at school. As a child he was occasionally anxious but never displayed anything remotely resembling what is going on now! We are frantic with worry, and everything is complicated by our son's refusal to seek treatment. We did bring up the possibility of strep infection being a possible cause when his symptoms first showed up in January of 2013 (our son had just had the flu), but our son's doctor said our son had no sign of infection and no tests were done. Sorry-- I've gone on too long. Would love to hear any thoughts you all might have . . .
  6. Hello, I'm new and was recommended to this forum by a sympathetic neighbor. Our teenage son is undiagnosed because he refuses to be seen by anyone other than his pediatrician. He has just turned 17 and for about 10 months has been displaying some dramatic behaviors that are very similar to those described in "Saving Sammy." My husband and I have been trying to work with our son's school counselors and teachers, but because he can cover up his symptoms at school, they think that nothing is wrong with him save, perhaps, for a case of ADHD, which they think accounts for the sudden, complete decline in his school work. He is bright and sociable. However, we have to beg him to wash himself at the sink and brush his teeth. (He has not taken a shower for over four months.) At home he steps over imaginary walls, twirls, walks backwards, and has great difficulty crossing lines or thresholds. Getting out of bed and dressed is a struggle every morning. Going to bed is the same. On some days he eats and drinks nearly nothing because he cannot make up his mind what to eat. He has difficulty initiating work on his homework assignments, so does almost none of it. He's failing at school. Some days he is incredibly defiant at home but never at school. As a child he was occasionally anxious but never displayed anything remotely resembling what is going on now! We are frantic with worry, and everything is complicated by our son's refusal to seek treatment. We did bring up the possibility of strep infection being a possible cause when his symptoms first showed up in January of 2013 (our son had just had the flu), but our son's doctor said our son had no sign of infection and no tests were done. Sorry-- I've gone on too long. Would love to hear any thoughts you all might have . . .
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