Can I just vent/whine a little?

[Williams_Mom]

I just need somewhere to share my...I don't know what to call it...sadness and frustration, maybe?... where folks know what I am going through...

 

I just sent my 11 yo son off to middle school to take his state assessment exams (this is only part of the day, though). These exams are important in that they help determine his class placement next year and I think that the school gets certain kudos/dings depending on how the kids do on the exams (but I didn't tell my son either of these things). My son is a mess. He wouldn't eat breakfast because everything was dirty - I had ruined everything. I upset him because I came upstairs too quickly after he did (he was already down the hall and in the bathroom). I don't even know what I did (while his anxiety is hard to deal with, I can usually figure how to deal with it... meaning, things like...if I was my hands before I touch anything and don't let anything touch my shirt and serve him with no one else in the room, then he'll eat. As you all know, this type of thing changes day to day) He does not eat lunch at school (and won't take lunch either). He wouldn't wear a jacket or pants (he is wearing shorts and a t-shirt). It is 32 degrees and is supposed to go up to 42 today. He won't brush his teeth. I try not to let him see that it worries me. I know that he is miserable but he can't let him stay home from school again - he has missed too much already (there have been days where he just can't go). His testing from before PANDAS all indicates math brillance (a small bragging moment!) but he has a 56% in math right now - and that's been a struggle to achieve. It would be one thing if he wasn't an emotional mess and telling me that he "feels bad" frequently, but he is. It is exhausting for me to watch him go through this - I can only imagine what it is like to be inside his head. :-(

 

We are in the process of scheduling another IVIG but the insurance company (as some of you have mentioned) is dragging it's feet. I just want to get it done and hopefully get him feeling better.

 

Thanks for letting me whine... while friends and family see it, too (obviously) they don't live with it and don't fully understand (and they try to "fix" everything and sometimes, I just need someone to listen for a bit...)

 

Thanks!

 

Sally

[SSS]

I'm so sorry ((hug))

And I do know exactly what you mean--I could write pages on clothing issues, and we've had periods where my dd can't bear the shower/bath, refuses to get her hair combed, etc., and trying to get them off to school.

I DO get it.

I hope he gets to feeling better soon---is he on antibiotics? Do they help?

PV's-----

[Wilma Jenks]

Williams mom. You can vent anytime u want. I just recently got my girl to take a shower after years of not taking one. Now... she won't stop taking them. She has always had confusion, OCD and raging since she was born. It is so hard either way... How does your child do socially? Did the first IVIG do any good?

[Williams_Mom]

I'm so sorry ((hug))

And I do know exactly what you mean--I could write pages on clothing issues, and we've had periods where my dd can't bear the shower/bath, refuses to get her hair combed, etc., and trying to get them off to school.

I DO get it.

I hope he gets to feeling better soon---is he on antibiotics? Do they help?

PV's-----

 

 

Thanks so much for your response. I am feeling a little bit better today but it was really nice to come here and see your response and know that someone *gets* it. In answer to your question, yes... he is on Omnicef 300 twice a day. I am not sure if it helps or not. I think that it does *some*, but not enough. Again, thanks so much! It means a lot!

[Williams_Mom]

Williams mom. You can vent anytime u want. I just recently got my girl to take a shower after years of not taking one. Now... she won't stop taking them. She has always had confusion, OCD and raging since she was born. It is so hard either way... How does your child do socially? Did the first IVIG do any good?

 

Thanks for the response! It is *so* nice to have folks that get it.... Ahh... the raging. I don't know what to do sometimes. Overwhelming for me (and for him, too, I imagine). Wow, since your DD was born? How old is she? As for my son socially, he is struggling. He used to have lots of friends and essentially has lost most of them, I think. It makes him (and me) so sad. The first IVIG was great. The improvement in a week was just amazing. I have my fingers crossed for the second one to go the same way (after we get it through insurance..) Again, thank you so much for your response. It means a lot!

 

Sally