Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » Immunosuppressant in school


10-24-2010, 04:26 PM   #1
Zoodles
Senior Member
 
Join Date: Oct 2010
Location: Ohio

My Support Groups:
immunosuppressant in school

My son is on Humira. About a month ago we had a meningitis scare- turned out the little boy had whiplash that had been untreated for weeks.

Just curious if anybody has successfully managed having their school system notify if there is any unusual infection in the school. Doctor has suggested we open up a discussion with the school and they are responding with confidentiality and hand washing.

New drug- new concerns. Anybody been there?

Thanks in advance
10-25-2010, 05:04 AM   #2
Dexky
To save time...Ask Dusty!
 
Dexky's Avatar
 
Join Date: May 2010
Location: Kentucky

My Support Groups:
Hi Zoodles! We have a very close relationship with many of the faculty at my son's elementary school so we are well informed in this regard. However, next year he will start middle school which is much larger and we don't know as many of the teachers there. If his white cell count becomes an issue, we may have to keep him away during any sort of widespread illness. So in our case it's more new school-new concerns but I know how you feel.
__________________
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
10-25-2010, 06:03 AM   #3
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
I have not had an issue with the school informing me of any infectious outbreaks at school. I don't buy the confidentiality crap because you are talking about easily contracted infection here, not an individual student with a disease that requires intimate contact in order to become infected. Therefore what is the issue with informing you that there is gastroenteritis, influenza, chicken pox, etc affecting students, they would not be naming names so I would like to know where the confidentiality comes into it. I would get a letter from the doctor and really take them to task on this. Good luck!

Dusty.
__________________
Mum of 2 kids with Crohn's.
10-25-2010, 08:18 AM   #4
Zoodles
Senior Member
 
Join Date: Oct 2010
Location: Ohio

My Support Groups:
Thanks for the replies.

We moved into middle school and things have changed. Principal keeps telling me to cut the cord. Have a letter from the doctor and will keep working on it.
10-25-2010, 08:46 AM   #5
Astra
Moderator
 
Astra's Avatar
 
Join Date: Jan 2010
Location: St Helens, Merseyside, United Kingdom

My Support Groups:
Principal keeps telling me to cut the cord.

What an ignorant pig!

Of course you need to be informed of infectious diseases such as TB and chickenpox, your child needs to stay off school til the outbreak is over. I work in a special needs school and they are very aware and have a duty of care to keep me safe! And I'm not a child!
Go to the pig and inform him of your rights!
good luck
xxx
__________________


Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




http://www.facebook.com/#!/profile.p...4208290&ref=ts

No-one should make you feel inferior without your consent!

10-25-2010, 11:57 AM   #6
Crohns08
Senior Member
 
Crohns08's Avatar
 
Join Date: Sep 2008
Location: Florida
I'm currently on humira and attending a university so I know the struggles! I've just been paying close attention and listening by word of mouth about who's sick and if it's spreading. Sometimes I'll even ask my professors as well. Carrying a small bottle of hand sanitizer could be very helpful! Also just be aware of who's coughing and just looks unwell.
__________________
Toni, Diagnosed in September '08
Specific Carbohydrate diet
Currently on:
Yoga
Vitamin D
Gabapentin
SCD Multivitamin
Tums
Percocet
60 mg pred tapering weekly
Protonix
Levofloxin
Surgeries:
09/2011 - Draining an Abcess the size of a lemon!
10/2011 - Same abcess, different approach this time, open incision!


Add Me on Facebook!
10-25-2010, 12:51 PM   #7
bushydougie
Senior Member
 
bushydougie's Avatar
 
Join Date: Jun 2010
Location: Leeds, United Kingdom
I am a Nursery teacher and a few years ago we had a child who had cancer and was being treated with a variety of drugs and thus couldn't come in contact with infectious diseases. Whenever we heard about any such disease going around school we would phone his parents immediately and give them the decision about if they wanted him to come in or not.
This is not a matter of confidentiality but about your sons health! They should easily be able to support you on this.
10-25-2010, 01:03 PM   #8
Rebecca85
Senior Member
 
Rebecca85's Avatar
 
Join Date: Apr 2010
Location: Nottingham, UK
I work in a primary school, we have a chart issued by the NHS which state we must inform 'vulnerable people' (immunosuppressed people and pregnant women) of certain diseases such as TB. I don't see why it should be any different elsewhere. Maybe you need to meet with the principal and point out it could be a matter of life and death. Also point out you are not asking for names or anything like that, so it won't break confidentiality.
__________________
Crohn's in the terminal ileum, dxed Jun '10

125mg azathioprine
4g Pentasa
10-27-2010, 06:00 PM   #9
Mami
Member
 
Join Date: Oct 2010
I'm a teacher and I'd like to ring that principal's neck! We just met with my daughter's teachers, school counselor, principal, and office staff to discuss her newly dx'd Crohn's. They told me they're going to send an email to all 4th grade parents asking them to please let the school know right away if their child has strep, chicken pox, etc... because there is a student with a suppressed immune system (my Marilena). They never mentioned confidentiality b/c no names would be offered. Maybe try something along that route. They seemed pretty skeptical though about being able to tell me when a child is sick, b/c parents won't always say why and by the time they're dx'd, we've already been exposed...and they mentioned that she could catch stuff anywhere (grocery store..) I responded with, she doesn't spend 8 hours a day at the grocery store
__________________
Jamie, mami to Marilena 10
dx 10-7-10 Crohn's in terminal ileum

Pentasa 1000 mg
6 mp 12.5 mg
Omega 3 1000 mg
Liquid Vitamin C
Calcium tablets
Multivitamins
Probiotics
Emulsified Vitamin D 2000 IU
Hugs (daily)
11-12-2010, 11:06 PM   #10
susanfrances
Member
 
susanfrances's Avatar
 
Join Date: Nov 2010

My Support Groups:
I take immunosuppressants and work in schools with children with physical and health disabilities. I cover 15 different schools Pre-K- High school. My best friends are the secretaries. They sign out every kid who goes home sick and usually know which class they came from. They know the kids who have been out for a few days and usually what they have when their parents come in to get make up work. You can always talk in general terms so there are no confidentiality issues. It may even be worth signing him in a few minutes late one day to have a chance to get to know them a bit and explain your situation.
__________________
Diagnosed in 2007/ Crohn's (ileocolitis) Fistulatomy with seton placement 2007, 2008
6MP 2007
Pentasa/Entocort: no luck
Humira: allergic
Cimzia: started 12/10..fingers crossed

Also, sweet, precious 9 year old daughter with hx of weight loss, diarreah, abdominal pain and cramping, CD- terminal ileum- 11/10- trying every possible homeopathic route first
11-13-2010, 09:25 AM   #11
woops!
Senior Member
 
Join Date: Apr 2010
Location: Virginia
Im a school nurse (and part time ER nurse)
1) Have a meeting with your school nurse.
2) Ask for a care plan (you will have to get a new one every school year) the school nurse will fill it out, Dr will sign it, once this is in place IT IS THE LAW.......
3) SN will send this out to your kids teachers, they have to sign that they understand your childs issues.
4) In the CP ask that you be notified of any illness that will affect your child.
You have alot of rights...
If you need more help with this PM me and I can help you further.....
And to the principal who said to "cut the cord" I have a few choice words for him!!!
Good luck. Let me know how it goes
__________________
Wherever you be.... let the wind blow free!
11-13-2010, 07:53 PM   #12
susanfrances
Member
 
susanfrances's Avatar
 
Join Date: Nov 2010

My Support Groups:
A nursing care plan is a great idea. If you are also concerned about abscences, extended time-lines for make-up work, or other educational issues, a 504 plan could be developed along with the care plan. It can also alloow for hospital/home services on an intermittent (or as needed basis) without having a waiting period (usually 10 days). As with the care plan, it requires a doctor's note, but a combination would provide double protection. Have the notification of infectious illness included in the 504 also.

Administrators can be real jerks sometimes (sorry you got one of those), but a meeting and drawing up the documentation is likely to get his attention.
Good Luck!
11-13-2010, 10:18 PM   #13
Mountaingem
Forum Monitor
 
Mountaingem's Avatar
 
Join Date: Jan 2010
Location: California

My Support Groups:
My husband works for Los Angeles Unified School District and he also suggests documenting everything.

He also said that if you're in the U.S., this could be considered an ADA issue, and to contact them about your son's situation-they can advise you on his rights and the school's responsibilities.
And for the sake of any other kids dealing with that principal, he should be reported for telling you to "cut the cord"!
__________________
Jeannette

I WILL STAY STRONG
I WILL FIGHT
I WILL WIN


Current Meds: Cimzia, Methotrexate, Prevacid, Sertraline, Nortryptaline, Prednisone, Atenelol
12-02-2010, 10:31 AM   #14
Zoodles
Senior Member
 
Join Date: Oct 2010
Location: Ohio

My Support Groups:
Sorry haven't updated this. Had meetings with the school nurse who could not do anything until the principal approved. Went to the meet with the principal again- lost my temper- swore and insulted his intelligence. Never got to my documentation. I was an absolute beast. Guess who is now getting updates? Still shaking my head over the whole situation.

We are debating about doing the 504. Right now we are okay- but I want to get it on file for high school.
12-02-2010, 11:57 AM   #15
woops!
Senior Member
 
Join Date: Apr 2010
Location: Virginia
Sorry your SN was not helpfull.... first time I have ever heard of a principal approving a care plan....
In my state we have to report to the health department every week any communicable dx in the school system. They may be able to tell you if their is anything in your childs school. Very strange that the SN did not go to bat for you. I guess I just work with a different set of school nurses in my county. Perhaps you should remind her she is the patients advocate...... She may have forgotten. In my schools I fight for my kids. School staff don't always understand medical issues..... thats why schools have nurses.
So sorry.... don't give up
12-02-2010, 12:57 PM   #16
Mountaingem
Forum Monitor
 
Mountaingem's Avatar
 
Join Date: Jan 2010
Location: California

My Support Groups:
That's totally unacceptable! I think it's time to call a representative from the Americans with Disabilities Act. If you can't get cooperation from the school, they can make sure the law is enforced.

I know it's hard to be "that person", but I always think at least this way the next person won't have to go through what I went through.
12-02-2010, 09:51 PM   #17
AZMOM
Moderator
 
AZMOM's Avatar
 
Join Date: Nov 2010

My Support Groups:
Zoodles - We've had a 504 for two years and it has been a blessing. I strongly encourage you to go ahead and do that and part of what you can put in there is notification for illness.

Claire's Mom
__________________
Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
12-03-2010, 02:08 AM   #18
Jennifer
Adminstrator
 
Jennifer's Avatar
I might lose my temper too if someone told me to just cut the cord already. Sir, you just do not understand, lemme school you. :P

My schools were always very understanding of my condition and I never had to fight for anything that may make my life easier. How hard is it to give a heads up about a particular illness going around? They did that for lice screening when we were kids. If you can't get the info from the nurses then the next best place was through the students (in my case anyway). Being a student I could hear them talking about who was out of school with what and it was usually mono when I was in HS. So talk to your son and have them keep their eyes and ears open for now because word of mouth is powerful and have your son tell you about anything they hear.
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
12-07-2010, 10:59 PM   #19
Brian'sMom
Senior Member
 
Brian'sMom's Avatar
 
Join Date: Dec 2010
Location: Kansas

My Support Groups:
I'm new to this Crohns thing. My son is 10 and is on Azathioprine 50 mg and Pentasa. I've been worried about him in school as we enter the winter months. Our GI doc said, "If he usually gets 2 colds a year, he'll get 3. Don't put him in a 'bubble' and don't worry". I didn't think I needed a phone call anytme another child was sick...do I? Have your kids caught every bug that comes along because of the immunomodulator drug? Ironically our son just had the stomach flu... instead of 3 days of it... he's missed 6 days so far.
Also, do your kids miss a lot of school (and they are at home well?)

Last edited by Brian'sMom; 12-07-2010 at 11:01 PM. Reason: forgot a question
12-08-2010, 10:43 AM   #20
Mami
Member
 
Join Date: Oct 2010
My dr said about the same thing, she'll just get more colds and they'll last a lot longer...like your 6 day flu. The school has been emailing me if there are cases of pneumonia or strep in her class/grade. She really hadnt missed too much school before dx. It seems like she's missed a ton in the last couple of months for dr visits, tummy aches, etc. It did help to do a presentation to her class. We did a powerpoint and then let the kids ask questions... it really helped her feel more comfortable around them too. The kids are really good now about hygiene procedures when they come in the classroom.
12-08-2010, 05:29 PM   #21
Zoodles
Senior Member
 
Join Date: Oct 2010
Location: Ohio

My Support Groups:
My doctor said the same when he was on imuran. We watch his white blood count and he's pretty immuno compromised while taking the humira

I wish that things were different, but at least he's able to move around.
12-09-2010, 12:29 PM   #22
Rebecca85
Senior Member
 
Rebecca85's Avatar
 
Join Date: Apr 2010
Location: Nottingham, UK
Brian'smom- it is things like measles, chickenpox, flu, pneumonia etc that you need to be informed of. Not every little cold or stomach bug.
12-10-2010, 06:27 AM   #23
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
@ Brian'sMom, My daughter has been on Imuran 50mg for 4 years, 3 years at school and 1 year living on campus at university. Over that time she has had very few infections and of those she has contracted she has been no worse than anyone else.

Dusty.
Reply

Crohn's Disease Forum » Parents of Kids with IBD » Immunosuppressant in school
Thread Tools


All times are GMT -5. The time now is 06:53 AM.
Copyright 2006-2017 Crohnsforum.com