3 steps forward, 2 steps back

[momcap]

We got DS(7)'s CamK score on monday - 176. I am no longer saying "maybe PANDAS". High ASO + high CamK + one out of control little boy = definitely PANDAS. I'm just hoping it's not PANDAS + ???. We have come such a long way since early August

(when he was getting the diagnosis of bipolar added to his alphabet soup) and someone mentioned that I should look at strep. Wow. I should be feeling great. But then I got his report card today. 'Needs improvement' and 'progressing with difficulty' in all areas except science. This is a kid who could easily pull off As without breaking a sweat, but he refuses to do any work and spends his day disrupting his class. His teacher states, "behaviour continues to interfere with his learning". I had documentation for a full time aide a year ago, but no, they suggested all he needed was a part-time aide in the mornings, who he shares with another student. I foolishly agreed, convincing myself that I shouldn't push for more help than he needs because he might lose confidence. But the truth is, I'm not even sure a full time aide would make a difference. Now instead of celebrating how far we've come, I'm sitting here devastated. I'm trying to figure out how on earth I will manage to learn all of the special ed laws overnight so that in addition to acting as his mother and doctor I will also be able to act as lawyer/educational advocate. I am completely overwhelmed. Somebody tell me I can do this too, cause right now I'm just feeling sorry for myself.

 

Thank you all for all the amazing advice and help so far. You've kept me going and got me this far. We would be in a very sad and dark place without this forum and I have to keep reminding myself how far we've come. One day at a time...

[laure]

Or hope it is PANDAS? Because so many many people on here have found proper PANDAS treatment to be a complete cure for their children.

[momcap]

Or hope it is PANDAS? Because so many many people on here have found proper PANDAS treatment to be a complete cure for their children.

 

Oh yes, I am hoping it is PANDAS, and not PANDAS plus Lyme, or PANDAS plus some other nasty bug. We have a consult with Dr. T on Tuesday and I'm hoping we will start the correct treatment for PANDAS. (He's been on and off a range of different antibiotics since August.)I'm not sure what that correct treatment is though. Is it antibiotics - high dose, low dose, which one(s)? Steroids? IVIG? PEX?

 

I wish more people stayed around on the forums to share their success stories. It seems the people still on here are mostly the ones still looking for answers and still struggling through treatment options. Is it possible to have a post pinned at the top of success stories so we can see how many get better and how they got there?

[butterflymom]

=

Edited October 5, 2015 by tampicc

[kferricks]

Or hope it is PANDAS? Because so many many people on here have found proper PANDAS treatment to be a complete cure for their children.

 

Oh yes, I am hoping it is PANDAS, and not PANDAS plus Lyme, or PANDAS plus some other nasty bug. We have a consult with Dr. T on Tuesday and I'm hoping we will start the correct treatment for PANDAS. (He's been on and off a range of different antibiotics since August.)I'm not sure what that correct treatment is though. Is it antibiotics - high dose, low dose, which one(s)? Steroids? IVIG? PEX?

 

I wish more people stayed around on the forums to share their success stories. It seems the people still on here are mostly the ones still looking for answers and still struggling through treatment options. Is it possible to have a post pinned at the top of success stories so we can see how many get better and how they got there?

 

Yes, step by step success stories would be wonderfull! For the ppl like me who are constantly questioning thierselves "am I doing the right thing?" "am I going to make it worse if I try this?"

[momcap]

Momcap,

 

This article was recently posted by someone else. I think it is really useful to give to teachers/school nurses/counselors. It gives a picture of how PANDAS can affect our children in school:

 

http://www.schoolnursenews.org/BackIssues/2003/0903/pandas0903.pdf

 

 

Thank you!

[KaraM]

There are a few of us around, don't worry!!

 

As for the academic performance, I have seen with my daughter heard from a few different parents, that once the PANDAS is being treated, that the kids catch up quickly. They may actually have been getting it all along, but just couldn't complete the work or communicate in a way to show that.

 

Prior to the onset of PANDAS my dd was a pretty conscientious and relatively strong student. But last year, she was having difficutly starting assignments, or if she started, wouldn't finish. Her work was sloppy. Her reading progression had halted. Getting her to do her math homework was torture.

 

Fast forward to now, she is once again doing pretty well. She does her work in school and only makes what I think is an age appropriate fuss about homework. Her reading is much stronger. I wonder a little bit about math and may post a separate question about this. That's the one area that I'm still concerned about.

 

Kara