so sad -- lost research

[smartyjones]

granted -- i've had a margherita -- well, truth be told, 1 1/2 margheritas b/c ds accidentally knocked over my half-drunk first one -- but. . . .

 

ds7 is pulling out of what i believe is stress-induced exacerbation due to horrible situation at school with 504 accomodations not being in place resulting in fight or flight and terrible guidance counselor who thinks ds is 'manipulative' escalating the situation but. . .

 

i am sure without proper pandas diagnosis, he would be asperger label -- although has never properly fit even in exacerbation but where most symptoms seems, so likely asperger or PDD- nos. . .

 

as he is pulling out of exacerbation, he has interesting insights into his thoughts and behaviors. . . i find this so sad that there is no one to report this to or to talk with him to gain insights into these minds and the thoughts on their own behaviors.

[bigmighty]

I am so sorry about the symptoms and also the school/counselor situation. Have you thought about writing some of your son's insights down in a journal that you keep for yourself? There may be times when it will be helpful for you to go back through and reflect on his thoughs yourself - or to remind him of some of them. Also, there may be times when one of his insights helps when you are meeting with a future year's teacher or counselor. My vote would be to document and save his wisdom until there is someone appropriate to share it with. Hugs - Suzanne

[PowPow]

My 13 yo has at times given us a glimpse into her "world". At the times when she was doing her best (and she was struck with "only" OCD) she would tell her little siblings to not be afraid, the fever is coming. That is how she described it to them. She knew when the OCD was becoming too much. She would warn them, as the OCD required her to rub their hands and it was very frightening to the little ones- as she would frequently scream while she did it.

Sometimes, now, she says that the her brain is not working right. She has described it sometimes as running miles at a time and other times like her brain is not "really there". She has short-term memory loss- like having no memory of being told of the death a family pet. She was told one day, reacted appropriately; 2 days later, she was truly surprised when it was discussed again.

One of the things that I am so taken by- is the true remorse for her actions during and after the episode. That is so heartbreaking to me. It is one thing to pitch a fit in a temper-- but to feel so sorry about something that you have to do to hurt others-- guilt is not something that needs to be added to their plates.

In reading about encephalitis lethargica, the juvenile pseudopsychopathia type is similar to what I see & read about many of our kids doing. They would commit atrocious, destructive acts and all the while apologize for what they were doing.

That is so sad to me.

However, my daughter has no memory of huge blocks of time- months even- when she had her worst exacerbations. Perhaps self-protective- perhaps neuro-based? Emmalilly, pandas16-- did you experience that?

Maybe that is specific to my daughter and not to PANDAS....

Edited November 19, 2011 by PowPow

[danddd]

smartyjones, I am so sorry about the guidance counselor issue. We had the same problem, but concerning the nurse too. they all thought she was "manipulating" them to let her call me, and sometimes come home. I held my ground, re-iterating her situation, that she is 100% NOT manipulative, and that sometimes she is really NOT ok and has to come home. I also mentioned that when things are bad she doesnt trust anyone at school to talk to, because she felt like they were all trying to punish her for being sick. Eventually they (were sick of dealing with me?)and decided to listen to my suggestions to "see what happens". They clearly thought all this would be a pattern that got worse and worse, but i was right and they were wrong. Now things arent so bad anymore. (granted dd is doing way better in school now, but it was slow progress over a year or so) good luck.

[emmalily]

My 13 yo has at times given us a glimpse into her "world". At the times when she was doing her best (and she was struck with "only" OCD) she would tell her little siblings to not be afraid, the fever is coming. That is how she described it to them. She knew when the OCD was becoming too much. She would warn them, as the OCD required her to rub their hands and it was very frightening to the little ones- as she would frequently scream while she did it.

Sometimes, now, she says that the her brain is not working right. She has described it sometimes as running miles at a time and other times like her brain is not "really there". She has short-term memory loss- like having no memory of being told of the death a family pet. She was told one day, reacted appropriately; 2 days later, she was truly surprised when it was discussed again.

One of the things that I am so taken by- is the true remorse for her actions during and after the episode. That is so heartbreaking to me. It is one thing to pitch a fit in a temper-- but to feel so sorry about something that you have to do to hurt others-- guilt is not something that needs to be added to their plates.

In reading about encephalitis lethargica, the juvenile pseudopsychopathia type is similar to what I see & read about many of our kids doing. They would commit atrocious, destructive acts and all the while apologize for what they were doing.

That is so sad to me.

However, my daughter has no memory of huge blocks of time- months even- when she had her worst exacerbations. Perhaps self-protective- perhaps neuro-based? Emmalilly, pandas16-- did you experience that?

Maybe that is specific to my daughter and not to PANDAS....

 

Yes, I definitely experienced that as well. Only during my very big exacerbation in '08. Things are pretty blank from midterms (when my high school boyfriend had a strep throat infection) until prom, when I seemed to come out of it for a few weeks. The things I do remember have a dream-like quality. Some are very distorted. I don't know if I have honest-to-goodness memory loss or if I'm blocking it out, but either way I hope I don't ever really remember.