Classified at school

[trademein]

Since I am new to this should I have my DD classified at school? she has missed 5 days so far due to bad mood, outburst, tics you name it.....

[kmom]

My dd missed a lot of school after first exacerbation at the end of the last school year. There was only a month of school left and I talked with the school nurse and her teacher at the time and they were understanding. I had a doctor's note and that makes things much easier. Learning more about PANDAS over the summer and fearful she'd miss more school days, I called the principal a week b/f school started and asked to have a meeting with important school figures to explain more about the disorder, inform them of upcoming IVIg treatment and just to have on record that this was all happening...kind of a forewarning of what to expect. A week later, my dh, dd (she insisted on going which I thought was great) and I got together for a meeting where we met with the principal, school nurse, dd's classroom teacher, counselor and support teacher (not that my dd ever had a support teacher, nor does she now but she's the one who schedules these types of meetings and I thought it was good she attended). I told them that they can see from dd's grades and state standardize testing (which she took at the start of 1st exacerbation and surprisingly scored high) that she's an excellent student and that I'd do everything possible to make sure she stays on track with school work even with missed days. I also asked them if they would provide a home bound tutor after IVIg IF she went backwards before getting better. I also explained I was a teacher and was more than willing to do the job...just wasn't sure of their rules on missed school and if a tutor from district was required. Before the meeting, I emailed each of them info about PANDAS...one to make the meeting shorter b/c I could talk all day about it and two b/c I wasn't sure I'd get it all out without crying. I asked them to work with me to make 4th grade go as smoothly as possible for dd and I couldn't have asked for them to be more receptive and helpful. I think talking to the school ASAP is your best bet. From what I know, my children are the first diagnosed PANDAS cases in the school...that's not to say there aren't misdiagnosed PANDAS children in the school. I know of 1 boy in particular in my dd's class who sporactically in the past year has had high anxiety, stomachaches, etc. I have heard a few stories of how the parents bully him going to school by threating they'll call the police and it literally infuriates me to the point I feel sick. I mentioned to the guidance counselor in a nice way that the school needs to get educated b/c this isn't as uncommon as we may think and no child or family should ever suffer with this when there are answers and help. I'm not saying all neuropsych problems have an infectious trigger but gosh, I wish every parent had the info so they could start w/ PITAND/PANDAS and go from there.

 

So my advice is talk to the counselor or principal at school. They may make accomodations that are very helpful.