(Also, is there any way to quote old messages on this forum? I couldn’t figure it out, so copied and pasted the message into my email program, and clicked forward to get the > to show up.)

 

> I am a school psychologist in a middle school. There
> is a female student who has been diagnosed with CAH
> and is on many medications.

Typical ones for CAH are Cortef (or some other kind of corticosteroid such as prednisone, or dex) and Florinef.

She has not experienced
> any adrenal crisis at school to date.

Does she have a plan for what happens if she gets sick at school? She may need extra medicine, for example if she has a fever.

However, she
> has
> been hospitalized for adrenal crisis in the past.
> She
> has excessive absences (50), (22)tardies and early
> dismissals due to side effects such as stomaches,
> malaise, UTI, etc. I have had several conferences
> with
> her parents and we both would like to see her remain
> in class. however, if home tutoring would be more
> helpful then that may be the direction we need to
> go.
> I have asked her mother to please discuss these
> issues
> with her doctor, so we can provide the supports that
> she needs.

It seems like she has been missing quite alot of school, I was suprised to read all of the other posts that seemed to think she was just using this as an "excuse". It seems like many people with CAH are able to lead a pretty normal life other than when sick, and even participate in sports, but this is obviously not the case with her since her plan states that she may not do strenouous gym activities.

I would be concerned that maybe her levels of medicine (cortef) are not right; and therfore she is feeling really bad from it. I have read another message board about Adrenal Insufficiency (CAH is the genetic type of it, it can also be caused by autoimmune disease or by taking prednisone for other diseases like asthma) and it seems like the people on that message board have experienced much more health probles (it is mostly adults.) Many of them are on disability, and unable to work. In addition there is a mother Ren who posts there frequently whose daughter has to have hospital/home schooling. She is VERY knowledgeable.  The website is www.hopeoasis.org. Maybe you could look there too for some input?

>
> She is presently failing in several academic
> subjects.
> She has refused to get dressed for Physical
> Education
> and is failing because of it.

Has she explained why? It would seem that the solution to this depends more on whether she feels too sick, is being bullied, or what?

She leaves class often
> to visit the nurse with various complaints. However,
> she is able to sit and talk with one of the aides in
> the student support services.
>
> Our goal is to keep her in class so she can pass to
> the 9th grade. Is walking around in the gym
> beneficial
> for her? The 504 Plan, currently, has Adaptive P.E.
> accomadations for her which essential is just dress
> out stay in the gym and don’t work up a sweat. She
> has
> Gatorade for her to drink with the nurse.

Could she just carry Gatorade or a water bottle with her? That might cut down on needing to see the nuse so much.

Our dilema
> is determining when the complaints warrant a trip to
> the nurse or stay in the class.

It is very important for her to learn responsibility for how she feels, and to be able to take care of herself. I would try to help  her learn this, not just tell her - you dont seem sick enough. She MAY be feeling terrible, and just barely getting through the classes she finds interesting, and then just not being able to get through the other ones because she has such limited energy. I agree that it is important to teach her accountability for her learning, but accountability means taking responsibility for yourself, it does NOT mean everyone telling her she is fine and making excuses if she is not! There is probably SOME component to "using it as an excuse" and maybe you can work with her on trying to not over use it - explain how that will make her look uncredible, show her other ways to ask for what she needs, etc. But she will have to manage her condition for the rest of her life, so needs to be involved in this, not just told what to do and when she needs to see the nurse.

Also, as kids get older, there is sometimes a concern that they are not taking their medicine as they are supposed to. Maybe this is a problem with this studdent. Also, this needs to be kept in mind when dealing with her situation, so that she continues to take care of herself, realize when her symptoms need attention, etc - not just ignore how she is feeling until she is so ill she has an adrenal crisis!

She has gotten in the
> pattern of skipping  the same classes that she finds
> boring and uses her symptoms to stay down in the
> student service area.
>
> I am concerned for her health and her education. If
> you have any suggestions or guidelines that can help
> us, I would deeply appreciate it. I have search the
> internet and found no guidance for children in
> school.
> What the school system can do for her.

I would say the following suggestions

Check with physician about any improvements in treatment that could be made (doses, treating other problems, etc)

Talk to student about why she doesn’t dress for PE, and what could work better. Could she do gentle stretches or walking in her regular clothes?

Stress can have different effects on people with CAH, so try to make this all as low-stress as possiblee - ie don’t constantly get in a fight with her about how she is just irresponsible, making excuses, should just "deal with" feeling terrible, etc. Be understanding! A good article for helping people to understand what it is like to have a disability that makes someone have trouble doing all the activities a typical person does even though they "don’t look sick" is http://www.butyoudontlooksick.com/spoons.htm It uses the analogy of spoons to explain limited energy and the misunderstanding of others. It is about lupus, but has been used by people with other chronic conditions to explain how hard it is for them, and especially when others misunderstand. Maybe you could hand a copy of this story to teachers or others who are "complaining" about her making excuses to help them be more understanding!

If the student is consistently going to the nurse, maybe there needs to be a set time in her schedule. For example, she could go there during her lunchtime and lay down quietly during part of lunch. Or maybe she needs a reduced school day. (Would that be a good compromise? It seems like reducing the demands on her would be a good way to start before ONLY doing home tutoring.)

Or have it set up with the nurse that she brings her work with her to the nurse’s office - she can even do it laying down if she has to. Help the student become responsible for her health, but also for making up the work.

If she is still missing such huge amounts of school, maybe home tutoring could help her get caught up with academics, without placing such a strain on her health.

Hope this helps. Feel free to write back if you have further questions.

>
> Thank you.
>
> Sincerely,
>
> Suzanne MUnzer