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azzuranotte

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Posts posted by azzuranotte

  2. Practical Advice needed

    in PANS / PANDAS (Lyme included)

    Posted

    We have an IEP, but it's current incarnation doesn't provide much support. It's more reactive to the behavioral issues he had at the onset. He is in a resource classroom, which is helpful. What parts of your IEP have you found most helpful? And I realize some things are individualized. I keep pushing for a smoother transition between normal school days and home instruction. We get stuck in this waiting period where it takes a month to get it implemented and then he's back in school.

  3. Practical Advice needed

    in PANS / PANDAS (Lyme included)

    Posted

    Thank you for the responses. My frustration level was particularly high this morning. I currently live with my mother and she will help support us for as long as necessary. So that is a blessing, but there are of course other issues being an adult living home again. She has also been out of town for a week and will continue to be for the next 2. I would love to have an understanding with their Dad, but he doesn't believe the diagnosis. I will have another conversation with him regardless. Child support? HAHAHAHA

    For my own sanity I need some sort of life outside of this care giving. I am still waiting for my funding info from my preferred school. It could really determine my decisions. I've also applied to an online school, though I have my reservations about that one.

     

    He's 10 and back in school part time. School refusal is his biggest symptom. Sometimes hard to distinguish if it's PANS or I hate school. I'm thinking I have to line up a backup caregiver of some sort.

  5. Practical Advice needed

    in PANS / PANDAS (Lyme included)

    Posted

    I am a single parent, who currently works part time while the kids are with their dad or my mother will babysit, particularly if ds refuses to go with his dad. My son was diagnosed with PANS in October and because of anxiety and school refusal has been home pretty much full time since then. I have been accepted into grad school for the fall. Staying home indefinitely with him is just not an option. If it weren't for living with my mother rent free, I don't know what we would be doing right now. (She also may have to move, because of her job.) How do you do it? Is there always a parent home with your PANDAS kid or have you figured out another way?

  7. Single Parents?

    in PANS / PANDAS (Lyme included)

    Posted

    Are there any other single parents out there? I am fortunate that I'm not dealing with this all totally on my own. I live with my mother and I cannot imagine having dealt with everything so far on my own. The problem is my son's father doesn't believe the diagnosis. Mostly this isn't a big deal since I'm the primary parent, but he does spend every other weekend there. Ex has been to only 1 doctor's appointment. I give him the dr's notes from every appointment. He doesn't give the meds he needs. Feeds him junk which we agreed was not in his best interest. It's hard enough to deal with everything with PANS and Lyme, but fighting him is exhausting. I consider keeping my son with me at all times, but I really look forward to that brief respite, even though I work most of the time he's at his dad's. I've attempted to give him info, but I don't even think he reads the doctor's notes.

  10. New Here! Eating changes

    in PANS / PANDAS (Lyme included)

    Posted

    The short story is that at the end of September my son had what we though was a virus. Was "better" and then started with school refusal, anxiety, rage, sleep problems, ocd. Through a series of events we were able to get a diagnosis pretty quickly of Lyme and PANS. After 2 different antibiotics, we finally saw improvement. We have a follow up appointment this week.

     

    The sleep problems seem to be making a reappearance. I'm not sure if this is a symptom or not, he wants to be a vegetarian. He's 9 which is interesting to me because that's when I decided to be a vegetarian. (Was for 20 years, but not anymore.) My mother thinks in my case it had to do with control and in some ways I think she was right. I could see how the same would apply to him, but I know food issues can be a symptom too. He says its because he loves animals. So since this announcement he'll ask for meet, burger, chicken and take a few bites and then decide that he can't eat it. I'll definitely bring it up with the doctor, but was wondering if anyone else has had similar experiences.

     

    Thanks

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