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Crohn's Disease Forum » Parents of Kids with IBD » Teenager stopping medication


01-25-2015, 10:18 AM   #1
OntarioMum
 
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Teenager stopping medication

Hi,

Just a worried mum venting. My teen, almost 17, stopped her meds(azathioprine and pantaprazole along with vitamins) without telling anyone in the middle of highschool exam stress last week. We are at day 6 now. Now she's not eating and extremely fatigued. She's excluding me from medical appointments, so I don't know what her treatment plan is. She has a very mild case of CD. Exams continue this week.
She feels she doesn't need the medicine anymore. I'm trying to support her as she explores this, but it's breaking my heart to watch and I'm super upset at the fact that I have to go back to work tomorrow and won't be able to listen to hear if she's eating anything.
How long do I let this go on before I take her to a doctor? Which doctor would I take her to? emerg? paediatrician? GI 3 hours away?
Has anyone gone through this?
01-25-2015, 10:29 AM   #2
DJW
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So sorry you're dealing with this. I understand your daughters decision; I went through it myself. I just had enough with the disease, doctors, meds, questions, EVEYTHING! I didn't have anyone around I could talk too who would understand (other than family or doctor). Is their anyone she can talk too? Would she consider joining this forum. We have a young adult section with people who can understand what she's going through.

Sending you both my support.
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Dave
01-25-2015, 10:32 AM   #3
my little penguin
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I am not sure about Canada but in the US until they are 18 the docs will share information with the parents . That said can you send the Gi office an email or call with an update.
They may not inform you of their plan but at least the doc would be aware of what was occuring and could plan accordingly.
I am paging Tesscom since she is from the north.
My Ibd kiddo is only 11 so that isn't an issue yet.
Addin I give him the Humira injection
He could skip the Mtx without anyone knowing through when he is older
Also paging clash and Catherine I think both of their kids stopped meds at one point
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01-25-2015, 10:56 AM   #4
OntarioMum
 
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I've left a message at GI office to let then know what's happening and I've called non-local pharmacy to ask about safety concerns for stopping drug (none other than risk of flare timing dependant on the individual), restarting best to be done via GI, not sure about prednisone if yucky tummy turns painful.
Thanks for the idea of suggesting the youth forum to her yet as her CD is so mild that I haven't wanted to scare her with what more serious cases are facing.
She's willing to talk with me again as long as I keep it short and don't push, and I'm being very careful to let her know what my actions in contacting the GI are, their outcomes, and to get her permission first. Right now it's the not eating that's scaring me the most.
01-25-2015, 11:15 AM   #5
Chester31
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My son (16) has also been reluctant to take meds. He was taken off Aza in September 2014 and has only been taking Pentasa since then. He currently has few symptoms and as he feels 'fine' doesn't see why he should take any medication. I think there's an element of control there too! It was the straight talking of the radiologist after his recent SBFT that convinced him to try 6MP. Good luck!
01-25-2015, 11:25 AM   #6
Clash
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My son stopped taking methotrexate(oral pill) for about a month while visiting his Dad, he was still on remicade, though. During this time he also had a fecal calprotectin test that came back normal(the only normal fc test he has had). He was 16 at the time.

Teenage years can be hard. They want independence and meds can make them feel chained to their disease. Although, I will fret and worry if my son were to decide to stop meds I know there is little I can do beyond giving him the facts about meds and uncontrolled disease. In the long run, he will really have to learn this on his own if he chooses to discontinue meds.

Sending hugs your way. I know this has to be so upsetting!
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
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PAST MEDS: remicade, oral mtx, humira
01-25-2015, 03:01 PM   #7
crohnsinct
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Oh man! That is so tough! My older daughter is on Remicade but pushed back on iron, calcium, vit d, mtx, folic acid...you name it! No rhyme or reason either. None of those made her feel bad. I agree with Clash, it is a control issue.

My younger daughter has mild disease. She started treatment on Thursday and is already pushing back. It is hard to justify taking meds when they do not really feel the effects of their disease.

You sound like a great, calm, supportive mom so hopefully she is seeing that it is having a consequence and will soon be back on the program.
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Remicade
Vit d 2000IU
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Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
01-25-2015, 04:53 PM   #8
upsetmom
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My 17 year old daughter recently "experimented" with her medication. Without me knowing she was stopping and starting her medication thinking it was making her sick. On the days she didn't take her meds she felt fine so she thought it was the meds making her sick so she stopped all together. Within days she started getting sick so she realized it wasn't the meds. Luckily we had an appointment with the GI the following week and he seemed to have gotten through to her. Glad you called the GI.
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Daughter dx CD March2012...
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Dx Premature Ovarian Failure 2014



01-25-2015, 05:06 PM   #9
OntarioMum
 
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Thanks Upsetmom. Our GI is out of the office until Feb 3 and will be retiring in April. We have an appointment to see a new GI in June. What poor timing!
But my biggest worry is that she's not eating anywhere near enough each day. She's eating SOMETHING each day, but when/how will I know if she needs to be seen before Feb 3 or so?
Just sitting here fretting...
01-25-2015, 08:13 PM   #10
awmom
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Gosh, it can be so difficult with teens. It can be hard to know exactly what is motivating them to stop....denial, forgetfulness, feeling bad. My son was good about taking his meds most days, but has never been good about taking ANY supplements, which he needed because he was malnourished, anemic and his BMD was really bad. I had to hand them to him. Now he is is college and I know he is not taking anything. He is on Remicade so he doesn't have to take daily meds. Would your daughter be willing to take some liquid supplemental shakes (the more elemental the better) just to keep her going until she sees the doctor? It might serve on several counts.....calories/nutrients, easy on her gut, requires little effort. I know even this can be tough with teens if you are not there to encourage them. Her appointment is quite soon and I hope the doc can convey to her how important it is to stay on her meds in order to maintain remission. It's different when they hear it from them. I hope she feels better soon and her appointment goes well.......but I know the waiting is sooo hard.
01-25-2015, 08:39 PM   #11
Tesscorm
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It is tough convincing teens of anything. Especially tough to convince them to takes meds/supplements when they feel well.

When my son transferred to his adult GI, the GI fully explained the risks of un- or undertreated crohns when he was recommending remicade. My son took him at his word and has not fought back against the meds/supplements. I think the opinion and recommendations of a doctor are sometimes better accepted than those we, as parents, offer. Hopefully, a discussion with her GI may help.

As far as now, I would also try to see if she'll drink the nutritional shakes. The more 'elemental' the shake the better but, even Boost or Ensure would provide necessary nutrition for the time being.

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Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
01-25-2015, 09:52 PM   #12
Maya142
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My daughter also likes to make decisions by herself - particularly regarding supplements ("I don't need to take these Mom!"). Her GI and rheumatologist have done a really good job of talking to her convincing her certain things are necessary - such as drinking shakes to keep her weight up and when that didn't work (even though she did drink them) an NG tube for overnight feeds.

Seeing a psychologist also helped a lot. My daughter was very VERY against seeing one, but fortunately her GI insisted and eventually (after lots of arguing) M agreed to go. She sees the psychologist that works in the IBD clinic at the hospital we go to and it has been so very helpful. Initially she saw one that was closer to home but it wasn't a good fit - she really needed to see someone who had experience with kids/teens and chronic illnesses.

Good luck! Sending hugs, teens are so tough.
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dx with JIA at 14
Ankylosing Spondylitis at 18
01-25-2015, 10:34 PM   #13
DustyKat
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Hugs, hugs and more hugs OntarioMum!

My daughter was also 17 when she stopped taking meds. I think it was a combination of control, the last year of high school and being fed up with being different. I was walking a tightrope between saying nothing and saying too much and just keeping the lines of communication open became of paramount importance. I am sure that a 17 year old with Crohnís is no different to 17 year old without Crohnís, they both think they are invincible.

My daughter moved away at the end of that year to attend university. She got herself back on track again and in her case stayed in remission. I donít ask anymore about meds as she is 22 and fiercely independent. She knows the consequences of not taking them but I still do wonder at times, does she?? I know she takes all the supplements, I am just not sure about the Imuran. The last time I asked, which was some time ago now, she answered with a yes very quickly, a little too quick if you get my drift.

The GI knows my thoughts and suspicions but ultimately it is up her how she handles things and as hard as it is I have to accept that. It doesnít stop me from dropping hints or sending her links to articles, etc.

Her brother on the other hand so straight you could rule a line with him. They are very close but I donít think they talk about meds!

You are doing fab mum and I wholeheartedly agree with the suggestions you have received re: forums, shakes and counselling.

Thinking of you and Good Luck!

Dusty. xxx
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