What to tell school?

[dut]

Hi - my dd9 has been waiting for about 5-6 months to get in to see the only local therapist that our great ped would recommend for a PANDAS child.

 

The therapist is obviously super booked up and although she says we can start in a week or so, I assume that she will only be able to offer new patients the not-so-popular appointment times that are during school hours. If this is the case my dd is adamant that we don't tell school why she is going. She does not want them to know about the PANDAS.

 

I'm not sure what to do. Hopefully, we can work a non-school time appointment but if not what next... any ideas. Do I have to give school a reason? Even if it's not required (but probably is) should I tell them a reason anyway to keep on good terms as you never know when it can all go to ***** with PANDAS.

 

Anybody got any good, weekly occuring excuses I did think of allergy shots but time taken would be too long and also why couldn't they be got out of school hours.

 

I'm worried that dd will just not go if we have to tell the truth and although she is in a good place in general we do have some chronic stuff and now would be a good time to prep for the next exacerbation.

 

 

Thanks for any ideas.

[1tiredmama]

Hmmm... Not sure about what excuse you might offer, or if one will even be necessary beyond, "Dd is in counseling." A white lie as to her whereabouts might not be possible as you will likely need an excuse with the professional's letterhead to get these absences excused--in our state, it's a law.

 

Last year, our ds could only get in to see his OT during school hours. Luckily, she had some flexibility with times (between 9am and noon.) I tried to vary the times so that ds would not miss the same classes every Friday. He presented his excuse every week, and no one questioned it (but it is a large high school.)

 

Thinking as I type, though, this thought comes to mind: It might not be legal for them to ask why your dd is in counseling. Even conversationally, it would be rude of someone to ask. Maybe you could just be prepared ahead of time with some vague answer, just in case. Dd deserves her privacy unless you, as her parent, believe the school needs to have a heads-up on her condition.

[thenmama]

If it were me I would just say she has a medical appointment. If they need documentation for their records, give them official appointment confirmation signed by the therapist. If they ask questions beyond that I would say, "I really appreciate your concern for child's name but our family policy is to keep our health matters private." Then if you were pushed further I'd drop something like, "I'm sorry, but I cant share any more about our child's health matters with you. I'm sure you understand, since the personal health information you're requesting is protected by HIPPA."

 

And don't feel badly about standing up for your child's (and family's) right to privacy.

 

Good luck!

[airial95]

Wow - this is a tough one.

 

On one hand - I agree with what others have posted already - it's not the schools business what appointments she has, especially if there is the proper documentation from a doctor.

 

With that being said, I also feel that the school should be notified of health concerns in a couple of situations - 1) if it jeapordizes the health of other students (not the case here, but applicable in other cases), 2) the health issues may disrupt the learning process for your child or other children - which IS the case with PANDAS.

 

I'm assuming that your daughter doesn't already have an IEP in place to address the PANDAS? How do her symptoms present in school? (in our case, school was where they flared the worst!)

 

If she's one of those kids who can keep it together in school before losing it completely at

home, then there's probably not any harm in keeping a lid on what the appointments are for.

 

If not - how thoroughly would she be able to explain to an intervening adult about PANDAS and what is happening if all heck broke loose during the school day? My kids are almost 5 and 6 - pre-K and 1st grade. They've had an age appropriate education in PANDAS, but I'm fairly certain if they tried to explain it to an adult they would think my kids are very imaginative!

 

On the other hand, having a discreet discussion with the school nurse about what's going on may be helpful in more ways than one. If you have an understanding nurse (which so far we have had in BOTH of our kids schools), you will have an ally in notifying you when there are multiple kids out sick, or if strep is going around the school. Your daughter would also have a safe-haven to escape to at school if needed during a flare.

 

There really are pros and cons to both sides...it might be worth an indepth conversation with your daughter about WHY she doesn't want anyone at school to know. Is she afraid of her friends finding out? Is she afraid teachers will treat her differently? Then I would discuss all of the pros and cons of keeping it a secret vs. telling a few trusted adults vs. telling the world. And again, if it were me, I would also explain to your daughter that she has legal rights and doesn't HAVE to tell anyone if she doesn't want to - I never miss an opportunity to shove in a civics lesson if at all possible!

[MomWithOCDSon]

Dut -- I can't remember: are you in the UK or Stateside?

 

I would think that HIPPA (American privacy legislation) would make it unnecessary for you to disclose any details whatsoever regarding your DD's condition, so thenmama's suggestion seems like a good, middle-of-the-road strategy . . . just saying that your DD has a medical appointment, provide them with a scrip or note from the therapist to back up your assertion, and leave it at that. Or is it that your DD wouldn't even be able to make peace with that level of disclosure?

 

That being said, there may be some very real benefits to putting at least someone in the school more "in the loop" on your DD's situation, as you've already aknowledged. Maybe you could have a calm, one-to-one discussion with DD about how, letting one or two adults at the school know something about what she's dealing with is NOT going to make it a full school disclosure, over the school's public address system, to all of her teachers and her peers? I can well appreciate the fear of social stigma, and maybe even some level of prejudice from unenlightened teachers who might see a mark in a file and predetermine a given student's abilities before they've even gotten to know them. But there may come that point in time that your DD will want/need someone in the school "in her corner," even if it's just the principal or the school nurse.

 

When our DS was first diagnosed with OCD in first grade, we put the principal, the school psychologist and his main (homeroom teacher) in the loop. None of the kids or their parents knew or were told anything, and if his anxiety hadn't been clearly in evidence in the classroom, we may have even declined to tell his teacher. DS was younger than your DD and had fewer concerns about social stigma at the time, but as he got older, those concerns obviously increased. The cool thing is that, with the right teachers on board, they've actually helped him navigate the last several years so that his anxiety-related issues are diminished in school and therefore diminished in front of his peers. So, he fits in better, is less of a target, and he's in charge of who he tells what, and to what extent, among his peer group.

 

Knowing you, I'm sure all of that has already occurred to you, and you're trying to balance your DD's concerns/desires and what's ultimately in her best interest. Seems as though you might have to play it by ear and "by gut," but I'm sure you'll work it out. In your shoes, though, I would just stress to DD that she can call the shots when it comes to who among her peers, if any, learns anything about what she's going through, but that if it will ultimately help her do better and be happier in school, you may come to a point where some limited disclosure to adults is necessary and that they will be required to guard her privacy, just as you do.

 

Good luck!

[dcmom]

Hi Dut-

 

Gosh, pandas parents have to deal with such tough stuff!

 

I agree with all of the advice above.

 

I will say the three schools we have been in since pandas struck have been wonderful. They have basically been supportive, while staying out of our way. We have given them all a written letter of diagnosis, and then when needed, just asked for what we want. Schools, teachers and administrators deal with this type of issue ALL OF THE TIME- it is not news to them, and they typically handle it with discretion, and very matter of factly. I do think it would be helpful to have the school officially notified of a diagnosis, just in case you need help in the future. We all know pandas can be unpredictable, and it is much easier to not have to educate the school and bring in doctor notes, if you are going through a crisis. We have found all of the teachers that we have worked with to be amazingly supportive.

 

The other thing you may want to work on is "normalizing" pandas for your dd. This is tough- but for me has been very important. I do not advocate that the kids broadcast their symptoms to everyone they meet yet I do feel it is important they work on coming to terms with their disease. We worked on this a little at USF, and continue to work on it daily. Basically, we say, it sucks to have pandas- BUT we look at kids with diabetes, ADHD, aspberger's, extreme allergies, etc and say it is JUST like them. We also look at kids with learning disabilites, divorced parents, and those who live in poverty. We try to stress that EVERYONE has a cross to bear, it is not WHAT that is, but how you handle it, that reveals who you are. I encourage them to be open with the fact that they have an autoimmune disorder- and that does not necessarily mean they need to share the gory details (when you have the flu- you tell people you had the flu- you don't share how many times you vomited, etc).

 

I also think (and this is a little tough love that I learned from our psych) that, at this point, the fact is it is not your daughter's choice whether she goes to the psych. I am not talking about setting up an adverserial situation- but when we were at USF we spoke a lot about "compliance". We found that due to pandas, we tiptoed around our kids too much, we needed to regain our power as parents. Our psych was very clear that we should look at ocd like cancer. If your daughter had cancer, and the doctor prescribed chemo, would she be allowed to not get treatment because she might be embarrassed at school?

 

Anyway- this is not me, just some gems I learned from USF, that we work on, and I like to share, if it helps.

 

Good luck!!! She will be a better, stronger person on the other side!

[dut]

Thanks for all the great replies

 

I spoke to dd again and when she relaised that it may be tell or no appointment, she was unhappy but willing to go as far as saying she has OCD.

 

She has told some close friends about her "worry tricks" already and seems happy to own it (we were playing a game in the car with her brother where you tell a facts about yourself in turns and she said I have OCD). I think it's the teachers that she is uncomfortable telling. She clams up and won't talk when I ask why but I suspect she doesn't want them to see her as different or treat her differently. I shall push a bit to find out why she doesn't want them to know.

 

At least we've got an option now. To date, she has always held it together at school. She tics and her math nose-dived last term due to a flare but that's it at school. Perhaps it will be good to have something on the table at school in case we need some accomodations in the future.

 

Thanks again. You are all very generous with your considered replies. I'm always so grateful for the generosity and knowledge of the folks on this forum.

Edited September 6, 2012 by dut

[dut]

"Whoa there,Misty!"

 

2nd installment... my dd has been told today that they aren't allowed water bottles in class and have to use the fountain. Well as the fountain is (in her words) "a germ fest and I don't want worry tricks all the time, I want you to tell them so I can use my water bottle".

 

Me thinks I opened some flood gates

 

So.... she's sleeping on it tonight but she thinks we should tell school and the more I think about it, the more it feels the best thing to do.

 

Now I've just got to decide how to best go about it....

[AmySLP]

Speak up about the water bottles! PANDAS or not, a child should not be denied water at their fingertips! First thing that goes into a letter for me and that I practice with my girls...no water fountains ever! Be sure all "specials" teachers know this too!

[MomWithOCDSon]

What's the deal with "no water bottles"?! Our schools have always encouraged them, making my only challenge having DS keep up with the one(s) he takes to school; I wound up ordering basically a case of the one model we really like and stashing them because he's constantly losing them or leaving them somewhere.

 

I think you and your DD are correct . . . "telling," at least those who are charged with her wellbeing during the school day . . . is the way to go. I would advocate going short and sweet with it so they don't get tempted to tune you out as some "over-zealous" parent, and then offer up a couple of decent articles/papers on the topic, focussing on ones that, maybe more than explaining PANDAS/PANS as an entity, will help them help DD through her school day.

 

Congrats on you and DD coming to consensus!

[AmySLP]

The best water bottles I have ver foundis on the website...fly lady.com. Double chambered stainless steel, my daughter comes home with ice cubes still in it from 9 hours earlier! Excellent reviews and reasonable priced. Check them out if your kids will only drink the water ice cold like my daughter....these are a godsend!

 

Such a little issue.....sorry to get off topic.

Edited September 7, 2012 by AmySLP

[dut]

Hi - I know - what's up with the bottle thing? this is the firstime weve been told this. It may be an individual teacher thing.

 

I mailed her teachers this am saying

 

 

Hi - I was hoping you would be ok with child's name briging in a water bottle.

 

Child's name gets infection-triggered tics and OCD and although we don't keep her in a bubble, we do what we reasonably can to limit infection exposure.

 

 

If you want to chat to me about this some more, that would be fine

 

 

does that seem ok

 

Kept it short but left the door open for more.... I find it difficult stating what I want but not feeling too pushy, well I am British.. don't find it easy to speak up. Living in US now tho' so catching on

Edited September 7, 2012 by dut

[MomWithOCDSon]

Hi - I know - what's up with the bottle thing? this is the firstime weve been told this. It may be an individual teacher thing.

 

I mailed her teachers this am saying

 

 

Hi - I was hoping you would be ok with child's name briging in a water bottle.

 

Child's name gets infection-triggered tics and OCD and although we don't keep her in a bubble, we do what we reasonably can to limit infection exposure.

 

 

If you want to chat to me about this some more, that would be fine

 

 

does that seem ok

 

Kept it short but left the door open for more.... I find it difficult stating what I want but not feeling too pushy, well I am British.. don't find it easy to speak up. Living in US now tho' so catching on

 

We Americans are generally inclined to speak our minds pretty freely! Nothing like having to step up to the role of Mother Lioness to help you find your own roar!

 

I think your note was perfect: short, to the point, and open-ended so if she wants to make an issue of it or take it up with you, she knows you're ready and willing to discuss. If you don't hear back from her, I'd operate on the assumption that she's been duly notified, and send DD off to school with water bottle in tow Monday morning. And tell DD that if teacher says anything about it to her, just to say nicely, "You should call my mom."

[dut]

Momwith-- I think you're right. I was going to wait for a response but I will channel my inner American and send her with a water bottle even if I don't hear back!

 

We were seeing our fabulous ped today anyway (ds and I) and I wanted to sanity check the fountain issue as I'm sure I'm a germphobe since this all started but she agreed and sent us home with a script saying dd has an infection triggered autoimmune disorder and that she would be concerned wrt infection if she had to use the fountain. She's also writing a letter for me if we need to take it further. I just love our ped...

[AmySLP]

Have to tell you this....my 5 year old started kindergarten with her brand new water bottle in tow. I had already informed all the teachers that I expect to bottle I with her at all times. She is a very mild case of PANDAs, probably because we have treated her so quickly and intensively. I worry about her bring strep home to my 8 ur. Old. Well anyhow, she told me she told her friend "stop drinking, it's full of germs" when her good friend was drinking from the fountain at PE class. OMG...I didn't know how to respond! I have told her just that for as long as she could understand. I hate water fountains...think they should all be removed!

 

I think the email was perfect....but please send the water bottle...our kids health first, niceties take a back seat!