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Priscilla

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  1. Like
    Priscilla got a reaction from bobh in Possibly PANDAS?   
    Funny I just got a notification from this response.  I have not been on this forum in a very long time.  I am so happy to report that I have a very healthy happy 16-year-old daughter who is no resemblance to the child that was in such turmoil. I will however say it has contributed to the person she is kind, compassionate and confident. I just went for an IEP meeting today which we did not even try Start one until eighth grade where things got worse before they got better but I have to say once  over the hump of entering puberty things really started to balance out. She has not used one accommodation from her bare bones IEP she has good grades healthy social relationships and almost no residual OCD. I hope this gives hope to the parents that are going through this. My main advice and one of the hardest lessons I learned and she actually helped me see it was not turning her into something that needed to be fixed with all the desperation  of trying to find her help she did feel like that for a time. Funny once I excepted exactly how she was whether it was going to last forever or not is when she started to get better. Sending love and good vibes to all of you and hope for a better day. 
  2. Like
    Priscilla got a reaction from stateless in Possibly PANDAS?   
    Funny I just got a notification from this response.  I have not been on this forum in a very long time.  I am so happy to report that I have a very healthy happy 16-year-old daughter who is no resemblance to the child that was in such turmoil. I will however say it has contributed to the person she is kind, compassionate and confident. I just went for an IEP meeting today which we did not even try Start one until eighth grade where things got worse before they got better but I have to say once  over the hump of entering puberty things really started to balance out. She has not used one accommodation from her bare bones IEP she has good grades healthy social relationships and almost no residual OCD. I hope this gives hope to the parents that are going through this. My main advice and one of the hardest lessons I learned and she actually helped me see it was not turning her into something that needed to be fixed with all the desperation  of trying to find her help she did feel like that for a time. Funny once I excepted exactly how she was whether it was going to last forever or not is when she started to get better. Sending love and good vibes to all of you and hope for a better day. 
  3. Like
    Priscilla got a reaction from MomWithOCDSon in Possibly PANDAS?   
    Funny I just got a notification from this response.  I have not been on this forum in a very long time.  I am so happy to report that I have a very healthy happy 16-year-old daughter who is no resemblance to the child that was in such turmoil. I will however say it has contributed to the person she is kind, compassionate and confident. I just went for an IEP meeting today which we did not even try Start one until eighth grade where things got worse before they got better but I have to say once  over the hump of entering puberty things really started to balance out. She has not used one accommodation from her bare bones IEP she has good grades healthy social relationships and almost no residual OCD. I hope this gives hope to the parents that are going through this. My main advice and one of the hardest lessons I learned and she actually helped me see it was not turning her into something that needed to be fixed with all the desperation  of trying to find her help she did feel like that for a time. Funny once I excepted exactly how she was whether it was going to last forever or not is when she started to get better. Sending love and good vibes to all of you and hope for a better day. 
  4. Like
    Priscilla got a reaction from MomWithOCDSon in a message of hope   
    Hello, its been a long time since I've been here..but just happened upon a quote I keep on my fridge.. Something I came across several years ago in my dark days and it really resonated with me, I've kept it... And this moment I just had, made me feel I need to share a message of hope for u. I get frustrated when desperately searching forums for anything, and u never see the outcome.. So I feel it is my duty to give u some hope.
    I was a regular here several years ago, my daughter was slipping from me, an 8 year old that seemed to be losing her mind, posesed even..we desperately tried everything... Pandas, Lyme, tourettes...years of antibiotics, 7 supplements a day, diet that was gluten, dairy, wheat, and sugar free (what the did I feed her?) Multiple ivig treatments, counseling...all of which this strong willed child protested..it was .
    Hair pulling, couldn't say certain words, no door ways , nothing passing her side, couldn't touch her, jumping spitting, grunting, violent outbursts, and all kinds of other rules her mind made that I could never even know..
    So here we are..14 and a half years now.. I would love to say it miraculously got easier...but it hasn't ..as a matter of fact..this strong willed teen got worse,
    Bigger, stronger, and raging hormones with no period at 14 years old.. By last Jan we did what I have avoided since 7 years old..she was hospitalized for 5 days..it was necessary.. Violent and physical altercations ( with her now bigger than me!) And put on partial outpatient program for 3 weeks Instead of school.. I was fortunate to have a wonderful program available for this.. And am not recommending hospitalization because as a nurse with some mental health experience ..it often does more harm then good...u need to find your path...
    I'm not sure what she learned from it..as she is..as always very resistant to discussing these issues..but she did get a bit better.. And opened up a little.. And I learned how damaging my good intentions to constantly seek help for her have been...she has always seen me as trying to "fix" her..a brief conversation about this.. And me telling her I know she can't help it..and doesn't want it..but letting it go has been huge... Is it easy? Absolutely not, are there still issues? Yup..but by June if this year..period came..I we afraid..will it get better or worse? I have to say..better..things seemed to be balancing.. School was horrible last year..(8th grade) the worst yet...but we just started high school ..she loves it..grades ate great..and Ocd and tics definitely milder..but still there...is it me backing off? Puberty finally giving relief? I don't know.. But I am confident she WILL be OKAY.. Different..but ok..I just wanted to give those of you who are where we were just a few years ago hope😀😀
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