04-08-2013, 04:34 PM   #1
hbonsky's Avatar
Join Date: Feb 2011
Location: Bay City, Michigan

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NG tube and school

So my son has been on Methotrexate and it seemed to work for about 8 weeks. Like every other med, it is not working anymore so Zachary's dr. wants to do the Elecare through the NG tube starting soon. I told Zachary's school today and the nurse says that he can't be in school with the tube because it could come out during school. I'm pretty sure thats not true. Anyone have this problem with your child at school?
Mom to Zachary - 6 years old
Diagnosed in December 2010
Tried Prednisone, Azathioprine, Humira, Remicade, Methotrexate and several others
(All medications have failed)
Colectomy/Ileostomy October 2011
J-Pouch in July 2012
J-Pouch failed - Reversal/Ileostomy March 2014
04-08-2013, 04:36 PM   #2
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Join Date: Mar 2013
Location: Lafayette, Colorado

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I'm pretty sure his doctor gets to decide if it's safe or not. Not the school nurse, who might actually not even be a real nurse. They never are, at my child's school.
Three passions, simple but overwhelmingly strong, have governed my life: the longing for love, the search for knowledge, and unbearable pity for the suffering of mankind. Bertrand Russell
04-08-2013, 04:47 PM   #3
Senior Member
The school HAS to serve your child, medical needs and all. I once had a student with serious heart issues and I requested the district provide a FT RN because I didn't feel comfortable being responsible for her health needs. (She had a pacemaker, waiting on a heart transplant, many restrictions, etc.) She was entitled to a free public education and she got one. Your son is entitled as well.
04-08-2013, 04:55 PM   #4
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Farmwife's Avatar
Join Date: Apr 2012
Location: Michigan

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BULL LARKEY! That means ...well you know!

If the n-g tube comes out and he's hooked up to the pump, then turn the pump off and call mom. No big deal.
If he's not hooked up to the pump and it comes out.....put it back in later.
The nurse (we have real certified nurses here) HAVE to accommodate your child. If they won't they have to send to tutor to your home and most school district won't want to pay for that.

Find out your rights in the school and talk to the principle, nurse and teacher.
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
04-08-2013, 04:57 PM   #5
Jmrogers4's Avatar
^^^^ Yeah that FAPE (free and appropriate public education). I'm sure others will chime in shortly with their kids who went to school with NG tubes. I've seen kids with NG tubes in schools (I work for a school district). She may just need to be educated about NG tubes.

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
04-08-2013, 05:01 PM   #6
Join Date: Oct 2012
Location: United Kingdom
Hi there of course your boy can enjoy school with an ng tube my son is older and in the u.k. but went to school for 9 months with his...no problems whatsoever he had to make sure it was tucked down inside his shirt just incase someone silly decided to tug it to see what happened...they never did kids were curious but he was never bullied or had any problems,we did a special education plan that stated if it were to come out he would be sent home It never did come out at school,think the teachers are scared of it! they don't like things outside their comfort zone.By the way it worked a treat you should see him now!
04-08-2013, 05:04 PM   #7
my little penguin
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The School is WRONG your child is PROTECTED under THE ADAA section 504.
The american disability act amendment.
But only if its a public school or private school ( non religious)

I recommend getting a letter from your GI ASAP stating your son has IBD and and accommodations ( including tube feeding) he may need at school.
Then contact the district office and ask for a meeting with the district 504 coordinator for your school.
Request a 504 eligibility meeting IN WRITING.
they have X number of days to respond. DO this quickly since the school year is ending soon. Also request to be present at the MEeting.

HEre are some helpful links.
Know the Law: (U.S only)
ADA and Rehabilitation Act of 1973
Any child who is on a feeding tube is protected under the American's With Disabilities Act and the Rehabilitation Act of 1973.

Most childcare centers must make reasonable accommodations for your tube fed child.

More information on the law

All public schools and any private schools who receive federal funding must also make reasonable accommodations for tube fed children under the ADA and Rehabilitation Act of 1973.

Section 504 prohibits discrimination based on disabilities, which includes those who are tube fed. Schools must have a 504 Plan in place for tube fed children (regardless of their need for other specialized services). Eating is a major life activity that is covered.



This one has the legal stuff that should get things moving for you

It is a federal law BTW and not state . IT is not optional.

but determining eligibility is KEY which is WHY you need EVERYTHING in WRITING.

GOod luck
PM me if you need help
DS - -Crohn's -Stelara -mtx
04-08-2013, 09:14 PM   #8
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Mehita's Avatar
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Location: Minnesota

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I second the 504 plan. He's protected and he's going to need this plan throughout his schooling.
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
04-08-2013, 10:30 PM   #9
Join Date: Jul 2012
Location: New York
Like everyone else said, your son is entitled to an education. Perhaps though, being in school would not be the ideal setting at this juncture. I was provided with a teacher in the home when I had an NG tube so I think perhaps your school district might offer the same if your so inclined. Any chance you can get him to drink it?
04-09-2013, 01:34 AM   #10
Holding It Together
CarolinAlaska's Avatar
Join Date: Jan 2013
Location: North Central, Illinois

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My daughter wasn't in school when she had her NG tube, but if she were, I don't think I'd worry about it coming out. He probably won't be climbing on the monkey bars or doing PE hooked up to a pump, but doing schoolwork shouldn't be a problem...
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
04-09-2013, 08:22 AM   #11
hbonsky's Avatar
Join Date: Feb 2011
Location: Bay City, Michigan

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Thank you for all of the responses. I am sure the school is wrong. We are in the lowest ranked school district in the country.. lol.. and I also am a teacher in the district so I know how crazy some of the people are that work here. Luckily for us, he only has 8 weeks left here and we are moving to another state this summer for better medical care and hopefully the schools will be more understanding and know the laws. This school has always given us trouble even when Zachary wore his colostomy bag, they said he should be home bound.

He should be getting his tube within the next 2 weeks. He is afraid of it and is sad because he won't be able to eat (not that he eats much anyway). He thinks kids will laugh at him too, but I don't think they will laugh, probably just be curious. I'll have to get a letter from the dr. before I go see the nurse again
04-09-2013, 08:29 AM   #12
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Location: Bay City, Michigan

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Also, he is already on an IEP for special education since he also has asperger's (autism). So, I'm thinking all of the accommodations can be put in that or should I do the 504 plan too?
04-09-2013, 08:35 AM   #13
Senior Member
There is a "Health" section that should be added to the IEP. You can list any and all medical issues there, as well as current meds, possible side effects, etc. I would also want a medical action plan (can be done at the same time as the IEP if the district RN is invited to the meeting) for the NG tube (what to do if it comes out, etc.). I've had these plans for students with seizures, severe allergies, etc. Spells out what the parents want done in case something should happen and I keep a copy at my desk. Also makes the teacher feel more comfortable because he/she will know exactly what needs to be done should a problem arise.
04-09-2013, 04:43 PM   #14
my little penguin
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you can make a tubey monkey or bear for him.
That may help
there are lots of photo clips of other kids playing ( even monkey bars - yes kids can do anything with it on) and hanging out etc.. with tubes on KFA if it would help him to "See" normal looking kiddos.

link here:


( does require membership - but that is free)
thread on tubey BUnny

you can use a beach ball valve until you have left over "button" parts.

tubey monkey thread

including a threads on backpacks and pumps for young ones who are no foods.
04-10-2013, 09:09 PM   #15
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Mehita's Avatar
Join Date: Nov 2011
Location: Minnesota

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You're going to want a 504 plan to go along with the IEP. Here's some info:


I know others have posted links on this before. Maybe someone else can speak up? MLP?

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