Privacy Issues in School-Advice Needed ASAP

[dancegirl54]

Today is the start day for Eric, my son. He took his riba this morning and handed a note in from doc, who has told us he does not have to disclose anything. It just said that he is undergoing treatment and on medication for a medical condition that requires he drink water round the clock and requires he be allowed to drink during class, work, etc.  The nurse just called me and asked what treatment he was on and if he had hep C. I said I would prefer to speak with Eric's dad before answering any questions - just for lack of anything to say. Her tone was not pleasant and as I am at work couldnt talk anyway. Advice?

[sfbaygirl]

As a former teacher who taught in public schools after dx for several years, I never told anyone. I was afraid that parents would have a fit too. I told one teacher and wished I hadn't, but never heard anything about it.

Usually, the nurse's office doesn't tell the teachers what is going on with medical stuff, but personally I think it would be good to know. Although we use universal precautions with cuts etc, I know some teachers aren't so careful. Remember the post about that teacher who passed around the lancet for her whole science class to ***** their fingers? I think it would be good for everyone to know. but I say that with a lot of caution, because of the stigma.

Now that the cat is outta the bag, I think pushing for inservices for teachers, parents and students about handling blood and Hep c would be a great thing to do. Perhaps the ones that are unenlightened will become a bit more educated on this.

[Morgaina]

I'm a teacher diagnosed about 12 or 13 yrs. ago. I know the mentality up here is a little different because we haven't had such bad press as you guys (I'm Canadian, EH). But sometimes things can get so complicated with exposed secrets. I told my union and my senior admin the week I found out which worked out well for me as a parent of one of my students tried to get me fired and they were all prepared with no surprises. Sounds as if your son probably contracted through blood products. However much we dont want to have HOW we contracted establishing our dignity, being the victim makes things much easier to deal with as far as social opinion. Having his difficulties a known and accepted fact could stop complex problems down the line. I know it was easy when I'm dealing with my own life but exposing my daughters to the cr*p people can hand out can be much more difficult. Seeing as to how your X has already taken that step, why not go speak with staff, give them info and be sure they're calm and have some understanding. My daughters friends made a point of coming over and visiting. Asking how treatment was going, before they went to the basement (kid's area). Only a few asked how I contracted but had no reservations about asking. Kids are just kids, there has to be a way for your son to get through this without the aloness of hiding or the persecution when facts are not understood. We hate what we fear, we fear what we dont understand. Peace to you.

[cuteus]

not everyone is bound by HIPAA laws unfortunately. We are not, in Medicaid services, only confidentiality policy, which probably carries no criminal sanction. The RN should be bound, but I don't know if she is so, in a school setting.

[jmjm530]

They were probably clued in by your doctor's stationary, which I assumed said something like "Department of Liver Disease". When I needed a note to put my health club membership on hold,  I got it on non-departmental stationary for that reason.

Personally, not knowing what kind of people you're dealing with, I wouldn't disclose anything to the school. You could also come up with a cover story like "he is being treated for anemia" as I did with my gym. Anemia, btw can cause dehydration. But maybe first, call Dr. A's office back and discuss the situation with him or his nurse letting them know you're concerned about your son's privacy at the school. They've probably run into this before and can give better advice.

Sorry things started out this way, but I'm sure it will all work out.

All the best.

-- Jim

[amommy]

I definitely wouldn't disclose what he is being treated for.  My guess is that the nurse may have googled the docs name and seen that his doc treats hep patients, therefore asked the question.  It is NONE of their business.  Your son is older.  He isn't in elementary school, where the likelihood of blood contact is greater.  Kids are so cruel to eachother, and if in fact the nurse's "tone" was as you heard, I would question whether she would willingly keep confidentiality.  All in all, unless absolutely necessary, I would keep doing what you are doing.  Hang in there.  I am wishing your son very few sides as he begins this journey.  If I can be of ANY help, let me know.  We are so close to eachother!!!! :)

[dancegirl54]

Great feed back, thanks so much, and I realize I am in "panic mode" right now - needed your voices of reason, and of course,"duh", I didnt even THINK of the stationary - good point Jim, but unfortunately too late.  I had spoken to my X, said I was posting and in the meantime called Dr. A's office. Laurie, NP said she didnt have good experience in this area - she had seen a LOT of discrimination and said there was NO reason for them to know - it would be different if he was in a residential school and had his toothbrush, etc laying around - though very slim odds of transmission. I also emailed betty, thanks cuteus. And Amanda's mom - WOW I have so many resources!!!!!
meanwhile X decided to call the nurse and tell her - and said she promised not to tell. Now I feel worse. I guess we will just have to watch and wait and take this a day at a time.
Cannot believe all this and only on Day 1!!!!!
ny girl - he is 18 and still in school - vocational program

[cuteus]

having to deal with hep c infection is bad enough, your children's infection, even worse. You do not need any more aggravation from ignorant people and cruel HS kids.  A recent show on ABC demonstrated how cruel they can get. Things have a way of leaking out regardless of HIPAA. Stay with the script writing and do not deviate from it.  If he becomes anemic, then you state that he is so, no need to say from what. Stick to the script! There is no reason to be ashame of this disease, but people force that shame on you and he has enough on his plate at this time and does not need more.
good luck to you and him
ask Betty for her input?

[NYgirl]

You know...it's sad but it's NOT the kids I would worry about in disclosing it's the ADULTS or parents telling their kids "stay away from ERic he could get you sick".  People in general just SUCK when it comes to one of us, unfair as it is.

I don't think they have to know WHY he's treating at all.  Personally I just can't see why anyone needs to know if it doesn't impact them directly.

How old is he?  I cant remember.  The only real reason I would think it WOULD be important to tell them is in case he gets cut or something while at school. Because it's not only the bandaging up of an injury but also maybe the cleanup and having to use bleach.

If it were my kid I probably wouldn't tell them anything except "on chemo".  It's hard enough being a kid of any age already and people can be MEAN.

[FlGuy]

Nice numbers. I hope you are feeling well to go with them. Kinda sad though, you're probably feeling well enough to get out to the ballpark just when your season's about to end.

[Alady1620]

Since your child is older, you can always make sure that he is well informed of what to do in the case that he has an accident and bleeds.  You might even give him some gauze and bandaids to carry in his backpack.  Just a thought.

[GrandOak]

I guess you need to play it by ear.  Given your read on the nurses tone of voice, I would not disclose anything to her.

I would also check to see if they are bound by HIPAA before I would disclose anything to anyone in the school.  If they are, then they are bounded by law to maintain non-disclosure without your consent.  Any disclosure on their part would be punishable by law as a violation of your Civil Rights and also allow you recourse for a lawsuit against them.

I've seen too many in the education system which somehow think they are above the law and not just there but also in the Federal Government as well.  For instance my wife's doctor refused to supply medical information on her condition when her employer (a branch of the US Federal Government) became increasingly more demanding for it because it would be a HIPAA violation.  They amazingly stopped making their request at that point.

For more information in HIPAA see:

http://www.hhs.gov/ocr/hipaa/

[GrandOak]

Given your X may have jumped the gun, you may want to call and find out if they are bound by HIPAA like your medical professionals.  I would call someone in administration, possible HR, rather than the nurse to get the offical stance as the nurse may not know and just give you some off the cuff answer which might turn out to be false.

[Alady1620]

I am a former teacher and my experience was that school nurses are usually pretty discrete.  However, if word leaked out in the office or to the teachers, things could get messy.

I am sorry your family has to deal with this worry.  You have enough on your plate to deal with.

Personally, I would probably not disclose but it is hard to say.  He definitely needs to drink a lot of water.

[FlGuy]

Glad you're around today.  I have a story that may help you.  Went to see the hematologist in advance of starting tx again. Same office, new doc, but he's experienced and knows his stuff.
We went thru cbc schedule, intervention points for hgb, anc's and platelets.  Then I said, doc I don't want Neulasta, I'm willing to come in more frequently for neupogen but keep 'lasta away from me. He said that he will not use neulasta with hcv pts, will only use neup and was going to break the news to me about coming in more frequently when I needed anc help.  He said that he has not seen any studies that indicate that there is no risk for significant amounts of pegylation.  And, neulasta is not specifically indicated for hcv pts.  Since both the interferon and neulasta both are 'peged' he won't take the risk. Maybe that will help you if your guy is too 'lasta happy.

[NYgirl]

Oh man - God love our x's.  Thank God they know everything and are always right - otherwise you might have had to make a wise, educated, thought out decision there!

That is JUST the sort of thing mine would do - here you are trying to be reasonable and he just DOES what he thinks is best on his own. ARGH!

If she tells anyone at ALL you let me know and I'll come pop her with my Midnight Special - I am from NY after all ;)

[sfbaygirl]

Hi! How you doing? Tell that new Hemo not to make any mistakes and give you that 'lasta!!! I am pretty psyched today, got my labs yesterday and my ANC went up to 1.3 on it's own! Also my Hgb went up to 12.5 on it's own. So there DR! See I don't need that stuff!!!! Well, at least for another week. LOL

That's interesting about the two pegs. So he thinks that isn't a good idea huh? I wonder what he thinks about Aranesp? That didn't cause much problem for me. Of course I felt so bad, I probably wouldn't have noticed.

[TravelGrl]

Just sent you an email.. we dealt with the very same issues with Amanda..and found it best not to say a word...Being a teen is hard enough dealing with the normal day to day stuff..rumors can shatter a teens spirit..

Amanda is in college now and all we said on the health form is that she has a liver disorder that she was born with..just enough so they know something is going on.. no questions were asked..

Whats done it done, maybe just go down to the nurse now and stress the fact that this is an extremely confidential issue to you and your family and let her no she cannot say a word...

Good Luck
Jodi

[Kalio1]

I just got a call from my NP to tell me my platelets are 137. She wanted to know what I had done to get them to go up. I started with 76.
I told her about my nutritional regimen and all the fresh fruits and veggies as that is the only thing I do, I don't take any supplementation. She wrote down my whole diet plan to share with her other patients.
I am so happy they have gone up! They are almost normal!
Could be they just went up on their own due to being UND but I cant help but think that good nutritional support is helping.
Rocker, I wanted to give you a shout out and say thanks because even though I am not as devoted as you or as knowledgable as you to organic eating, I have definately been influenced by your input and suggestions so Thanks again!
That made my day!

[sfbaygirl]

I am feeling pretty good! Energy is low, but I can go up those stairs at the ballparks without much problem. John bought season tix for the Warriors, so now we have tix for football and basketball now that the baseball season is over. Whewww! I have made quite a few lately. Also going through Psych evaluations/Worker's comp court this week. Now I wonder what possessed me to start tx when I was already suffering! I never like to sit around and figured I might as well tx too. Of course I am glad I am and as time goes by, sx's seem to be less (or I am used to feeling krappy) and hope it stays this way. You are beginning tx again in Oct?

[mikesimon]

I couldn't post to the thread - I think goofydad posted too long of a link or something like that.
As you probably know liver transplants are granted on the basis of the MELD score - and that alone for the most part. That is determined by a formula which uses 3 numbers:
1)bilirubin - 2)INR - 3)creatinine. I don't know the formula off the top of my head but it is easy to find.
The methadone issue probably depends on the policy at the clinic. I was transplanted in 2000 (before the adoption of the MELD score) and a man who was on methadone for heroin addiction was transplanted 3 days before I was. My center was, at the time, in the minority as far as that stuff goes. They also transplanted an HIV positive person around the same time and I think it was the first center to have done that. I may be wrong about this but I would guess that each center has policies that address issues like these and I would ask someone at the center nearby. If you get the wrong answer don't give up - there is probably a center that will list her somewhere. I know people from when I was transplanted that came from all over the country just because this was the only center that would or could help them. I am thinking of a woman who had a mutil organ transplant - small bowel, pancreas and liver - and this was her only option. My center is Starzl in Pittsburgh but I would tend to believe that a lot of the centers are more progressive now than they were in 2000. If I can help you in any way just ask. It's a lonely place to be when you're hoping for a transplant - and a bit scary too.
Mike

[FlGuy]

Planning on starting two weeks from today, Friday the 13th.  I chose it because of the irony.  Just need to get the meds. Innsurance and the doc are playing pat-a-cake right now.  Saw all the docs, did all the blood stuff.  So, it's just the meds and a call from the doc with the baseline pcr vl.  He's had the results for a few days but he spends a lot of time at the hospital scoping unsuspecting saps.  I'm ready for the tx, seen enough of the scope.

[Kalio1]

Thanks Elaine, you are such a sweetheart. I am a Mom too and I know it must be hard on you to cope with your son's health issues yet you remain so positive and have such a good attitude. You know what they say, attitude is everything!
He's lucky to have such a good Mom.

[GrandOak]

Actually I think the correct classification is that we are "big bags of water" (Sorry I forget the movie where the alien used that description for humans).

[FlGuy]

A few questions I would ask myself. Does the school nurse have a medical need to know?  I expect that all meds are administed away from school, peg at home, riba at home in the am and pm. No need for the nurse to hold meds? How secret is a secret in a public entity?
If it was my kid, and I have 2 in school, I would not inform of the specific condition. Too much at risk for the child either in the form of 'special treatment' or being 'labeled'.  I'd make sure the school has all up to date contact information and leave it at that for now.  You can always divulge later, if the need arises. But, once spoken, it can't be unspoken.  Tread carefully here.