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I was reading an article from the C and C Foundation of America, and there is something called a Section 504, for handout at schools etc. Do you guys do something like this for your child's school, and is there something similar in Australia?

I have already issued a letter to the school about my son, but I wanted to do an updated one now.

I also read THIS

Changes in cognitive function including compromised attention and concentration, reduced capacity to process information, disruptions in memory and reduced ability to multitask are also manifestations of this disease.

This is something I haven't really thought about, have you found this to be true in your child's situation?
Changes in cognitive function including compromised attention and concentration, reduced capacity to process information, disruptions in memory and reduced ability to multitask are also manifestations of this disease.
We have that line in my son's 504 plan because of prednisone. When on pred he has trouble concentrating, can't stay focused and is distracted. Homework is a nightmare because it takes him forever to get through simple assignments. Last year he was on pred twice during the school year and his Algebra teacher gave him extra time for tests because she knew the pred was affecting our normally highly academic boy.
ah okay, so in your case the changes are caused by the medication, but in this quote it seems to say these problems are because of the disease? I find this interesting..
Not sure if there is anything similar in Australia. Maybe Dusty would know.

When l went to my daughters school to let them know she had crohn's disease all l was told to do was update her information and write down she had a medical condition.....just in case of an emergency, so they would know what to do.
I don't know if there is something similar in Australia but I know Dusty wrote a letter and it is in one of the threads somewhere. I'll see if I can locate it shortly.
I think the impairments apply generally when experiencing a flare but then I don't blame them for not being able to concentrate. The fatigue he experiences when flaring would also make cognitive abilities be diminished and we have it written into his 504 and also talk to each of his teachers about those kind of symptoms when flaring so at that point they give him a "meat" work and not "potatoes" in other words he will do the main assignments but not busy work or where they might assign 20 math problems he will only have to do half or just enough to show understanding of the concept.


Staff member
I've (half) joked on here that I've wondered if Stephen's forgetfulness is an EIM!! :eek: I swear he forgets/loses everything! I haven't noticed it to be a problem with learning things (ie, he's been working in my company's accounting department for the last few months and has done well learning the same job that much older, more experienced people hold) but he's only had his driver's license 2 years and has probably lost his 'card' 2 or 3 times, forgets his wallet all the time, loses his bank card, went to a show a couple of weeks ago, half way there before remembering he DIDN'T have his ticket, etc., etc.

BUT, this also sounds like a typical teenage boy having too much fun to worry about 'details' and probably not getting enough sleep?!?!? And, he's always been a procratinator which, of course, means you end up rushing around, which means you then to forget things in the rush...

So IDK about the EIM... but I have wondered???


Super Moderator
Hey farmerswifey,

Sorry for the late reply. :redface:

There isn't an equivalent to the 504 in Australia but all schools across the country must adhere to Commonwealth Anti-Discrimination Act. You will also find that the Education Department in each state has a Disability Policy, this is Queensland's...


As to our experience...I had no problem with the school my children attended and whilst they were more than accommodating it took me some to realise that when it came down to it they didn't really understand what we were dealing with. I kept them fully informed at all times and spoke with them regularly about Sarah so made the assumption that they 'got it'. Like I said, they were fab but something was missing.

What I would recommend is to do what I did when I came to my senses. :lol:

I asked for a meeting with the Principal, Deputy Principal, all the teachers Sarah had, the school counsellor and any other staff that were involved in her teaching/care. I made it clear when making these arrangements that i would be conducting the meeting. I wrote the following report:

Sarah was diagnosed with Crohn’s disease in July 2006 following surgical intervention. In hindsight the disease had most likely been present for at least two years prior to hospitalisation. During this time other diagnoses had been made including Abdominal Migraine and Pancreatitis.

What Is Crohn’s Disease
Crohn’s disease is one of two types of inflammatory bowel disease (IBD). Any part of the gastrointestinal tract can be affected but the most frequent site for Crohn’s disease is the ileum. This is where Sarah’s is located.

The cause of Crohn’s disease remains unknown, however, a number of factors are believed to contribute to its formation. These include genetic predisposition, environmental effects, viral or bacterial infections and/or abnormalities of the immune system. The only one we can rule out for Sarah is genetic predisposition as she has no first degree relatives with the disorder.

Post 2006/remission
The surgical intervention required in July 2006 was a Right Hemicolectomy. This procedure necessitated the removal of 68cm of bowel including the terminal ileum. As a result Sarah has been in remission since this time due the combined effects of the surgery and medication.

Side Effects
The issues that Sarah faces on a daily basis have little to do with her Crohn’s disease, they are a direct result of the surgery. Unfortunately the side effects impact significantly on her day to day functioning and they include:
 Eating – Sarah has to plan her eating around what her activities are for the day. On an average school day Sarah will not eat breakfast or lunch and if she is working in the afternoon will not eat until she has finished work. Occasionally she will have lunch at school.
 Toileting – The reason for the above issues are due to the effect eating has on her need to use the toilet. The removal of the terminal ileum has resulted in frequent loose bowel motions (the terminal ileum is where water and bile salts are reabsorbed back into the body hence the loose bowel motions when it is removed). One of the most disturbing aspects of this is if Sarah is unable to eat until quite late in the day she may be up to the toilet 7 or 8 times during the night. This then leads to the next problem.
 Fatigue – The majority of Sarah’s absences from school are not related to illness but fatigue/tiredness due to much disrupted sleep patterns.
 Anaemia – Sarah is frequently tested for haemaglobin , folic acid and iron store levels. The terminal ileum is also responsible for the absorption of B12 and other iron nutrients. Sarah receives supplementation of these but often sits at the lower end of the normal blood range and at times slips below. This then compounds the problem of fatigue/tiredness.
 Spontaneity – Everything Sarah does in her life has to be planned, she has no spontaneity. This affects her ability to socialise and attend outings, excursions, work and school.

Sarah takes the following medications on a regular basis:
 Imuran (oral) – This is taken daily. Imuran is an immunosuppressant drug and as the action implies its objective is to suppress the immune system in the hope of keeping diseases like Crohn’s in remission. It is not without its side effects the main one being its ability to affect blood cells which is the reason she is required to have blood taken at least every two months.
Imuran also causes photosensitivity so extended periods of exposure to the sun should be avoided.
 Folic acid (oral) – This is taken daily and is required as Sarah is unable to absorb it due to the removal of the terminal ileum.
 Neocytamin (B12) Injections – These are 3 monthly and again this is required as Sarah is unable to absorb it due to the removal of the terminal ileum.

Other Issues
Crohn’s disease and the effects of the (R) Hemicolectomy are problems Sarah is going to have to deal with for the rest of her life.
Migraines – Sarah also suffers from migraine headaches. These seem to be becoming less frequent and hopefully it will stay that way. Medication for these is taken on a needs be basis.
Sore Eyes – Sarah frequently complains of sore eyes. She consulted with an ophthalmologist as it was felt it could be related to the Crohn’s disease. No problems or defects were found which is good however the problem still persists

Discussion Points
• Sarah presents well thus masking problems that may be present.
• Matthew – do his abilities undermine her confidence?
• Counsellor – would it help?
• Needs sustained guidance and support.
Have a look through this thread. This is where the letter is located but it has loads of other useful information in it:


I gave a copy to each person present and told them that I would read through the paper, expanding on what was written, and if they had any questions to please ask as I competed each topic. I then asked again if they had any questions when I had finished reading through it.

As you can see at the end I listed additional points for discussion. It was during this time that I stated what i expected from Sarah in terms of her Crohn's and what I expected from the school in return.

You will also see that in Sarah's case she had issues with anaemia, toileting, eating, etc that did impact on her levels of fatigue and concentration.

The meeting was the best thing I ever did in terms of getting us on the same page. When it came to Matt then being diagnosed i did not need to go this extent again, and again I had no issues with the school.

Good luck! If you have any other questions ask away!

Dusty. xxx
I think it did effect my son's school performance. He always did well in school but it was more of a struggle for him in 3rd and 4th grade. When I look back at pictures of him though he was so horribly pale and thin. He often had headaches, stomaches and was barely eating. I think that effected things more than anything. He did wonderfully in the 6th grade last year. He was a bit behind in the beginning mostly because he was diagnosed in the first month of 5th grade and he missed a lot of school. His teachers did not hold him accountable for too much in the 5th grade. Which was good because we didn't want to have to worry about school work at a time when his health was a priority. But at the same time we knew this could be a life long struggle and we couldn't just give in to taking it easy. I think we have found a balance. I don't know if it is just maturity, feeling better, the fact that he is at a different school, but things seem to be much better for him now.
Where and how do you get a 504? DustyCat, can I copy what you posted as a guide line for my grand daughter?


Crohn's & colitis Australia have a booklet called:

Students with IBD. A guide for primary, secondary, and tertiary educators. It talk about a Student Health Support Plan

Only found about this when it arrived in the mail today with Sarah's blood test results.
I know it's a little late, but I am currently Dx'ed with Crohn's, and I am on my last year of VCE in Victoria at the moment, so maybe I have some useful info (I hope.)

Throughout primary school and high school, not much attention is paid to the disease. Extra leniency with attendance and assignment extensions are generally allowed by all the schools I've been to though. I've had an attendance rate of as low at 60% and I had still managed to keep up with the rest.

With Crohn's impacting concentration, it can have a pretty significant impact if you are flaring or on pred (I've been on three rounds so far.) Cramps and general aches and pains get pretty distracting when you are being pushed to the minute in an exam room. Fatigue can also be a bit of an issue at any time, because of the abnormal eating from a flare. However, when off of pred and without a flare, I haven't really noticed any concentration hindrance. I've managed to top the class with no handicaps assessment wise in 3 of my 6 subjects, despite having a flare last about 4.5 months.

Going into years 11 and 12, I'm fairly sure all states have a form of SEAS (Special Entry Access Scheme in VIC) to take into account medical issues, financial hardship and difficult circumstances like homelessness or family death. With my SEAS application, I had to submit proof of diagnosis, as well as a written statement from my specialist about the ramifications of the disease, and a little more information on you in particular.
From it, I am allowed non-timed breaks in exams if I absolutely need (including toilet trips) and the ability to not get insta-kicked from school if my attendance rate falls too low from medical issues.

He should do just fine in school :) As long as his heart is in it, there's always a way.