Crohn's Disease Forum » Parents of Kids with IBD » Hospital Wants to Let 15 Year Old Make Own Decisions on Treatment

04-22-2018, 08:55 AM   #1
Join Date: Jun 2017
Location: Deland, Florida
Hospital Wants to Let 15 Year Old Make Own Decisions on Treatment

Mydaughter was diagnosed with Crohn's two years ago in both intestines, she also has iron deficiency anemia. Last scopes when dignosed, Remicade every 5 weeks now and numerous iron infusions, saw Hematologist since GI wanted to rule out blood disease. Endoscope and Colonoscopy set for Tuesday. Capsule Endoscopy did not show anything but think I need 2nd opinion on that. Dr. gave choice between higher dose of Remicade and going more often(every 5 weeks), have been getting iron infusion every week and she has had enough of that, took 4 hours last week for them to get IVV in and prior to that once they had to hold her down. After scopes hopefully they will find problem although office keeps telling me two weeks for results which doesn't make sense since her first scopes (different Dr., I was told results before she woke up). Hospital thinks she should be allowed to decide for herself how often she gets remicade with me being involved. I would rather go every 5 weeks instead of giving her a larger dose (she once lost 1/2 her hip length hair from too large a dose 2 years ago), since when do kids make their own decisions on their care? Several questions in this post. Also what is the prep for 15 year old? Thank you
04-22-2018, 09:59 AM   #2
my little penguin
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If she was inpatient then the results from scopes are considered emergent
But the biopsy would have still taken 24 hours
Outpatient scopes
They still take to you afterwards so you know visually what is going on
But biopsy results wonít be done for 1-2 weeks

Hair can fall out due to many things including iron issues and malabsorption (very active Crohns)
Never heard of hair loss from remicade
Regardless hair will grow back
But once intestines are damaged you donít get new
They have surgery to remove the scar tissue

As far as deciding
Yes teenagers get a say in the treatment
Especially in this case where higher dose vs more often
We have done both at once
Teenagers have ALL the day at 18 as much as you may not want it
In ALL medical decisions
Including whether they have any treatment
Or NO medical interventions at all

So yes teens need to have a say on simple decisions of option A larger dose vs option B
More frequent infusions

In the end itís their body and they have some control what happens to it
The sooner their opinions are taken in acct
The better
Our GI states he will not give all decisions to the teen as in whether they have a scope or not
Or whether they take a biologic etc
But simpler decisions like timing vs high dose
You bet

You are your childís safety net for only a few more years 2-3 depending on her birthday
So better to prepare now

My 14 has more day now then at 12
And it will increase each year with us there
DS - -Crohn's -Stelara -mtx
04-22-2018, 10:09 AM   #3
Join Date: Jun 2017
Location: Deland, Florida
They do not need a biopsy, only doing scopes to find out where she is losing blood from since Iron infusions not making a difference. She is 15 going on 10 (very immature) and changes mind constantly. Many people on different blogs have reported hair loss from Remicade and it would take 8 years to come back. At 18 she can do what ever she wants if she is not living with me. She needs to make wise decisions and if it wasn't for weekly iron she would not care about 5 week Remicade.
04-22-2018, 10:31 AM   #4
my little penguin
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All scopes include biopsy
For Crohns
Itís how they determine if the inflammation is active or chronic
Biopsies are not an optional thing
Pathology reads the reports

Blogs or scientific studies
There is a big difference
04-22-2018, 10:41 AM   #5
my little penguin
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She may end up on both high dose and higher frequency
My kiddo needed both
Regardless of where she lives
Medically at 18 the doctor will not even let you in the room or discuss her condition unless she gives permission
Itís not a parenting thing
Itís a legal thing
Thatís how it works
At 18 patents donít get any say

Add in remicade every 5 weeks will add more scar tissue to her already scarred veins
She may no longer have vein access which is not a position
You want to be In
Since central line ports are the only option
Those are under the skin andvery high risk for infection
04-22-2018, 10:47 AM   #6
Join Date: Jun 2017
Location: Deland, Florida
If they left up to her then she would eat sugar, fried foods, nuts all every day, at 18 she can do what she wants, I am not concerned about three years from now but what goes on now.
04-22-2018, 01:06 PM   #7
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Honestly, they are giving her some control which is very important when you have a disease that gives you basically no control over your life. There isn't a huge difference between upping the dose or changing the frequency - both work. Hair loss could have been Remicade in the past, though it could easily be malnourishment or even active disease.

It sounds like she has trouble with IVs which is why she wants to do the higher dose. That's not a bad reason. As long as she is doing it with her eyes open - remind her she had hair loss which COULD have been caused by a higher dose of Remicade - then I think it's perfectly fine for her to make the decision.

You can also do a pros and cons list with her for each option - that will get her thinking about both options.

Teens are given more control around 15-16 because in a few years they will be making the decisions. Like it or not, we have to let our 18 year olds (who are really still kids) make all the decisions once they turn 18.

My 18 year old was VERY stubborn and refused a feeding tube. We watched her weight fall lower and lower - she had already been underweight and she was losing more and more. Nothing we said got through to her that she needed the NJ tube. She absolutely refused, even though she was so underweight and exhausted, she could barely do anything and was in bed most of the day. Since she was 18, all we could do was watch her get sicker and sicker and try to make her understand WHY she needed the tube.

Finally, when her doctor told her that her organs could fail if she lost more weight, she understood how serious the situation was, and agreed to the tube.

As parents, it is our job to teach them, starting at 15-16, how to manage their own healthcare. That means knowing their medications, filling their own pillboxes, and helping you make decisions. When the GI gives her the choice, then it's your job to help her think through the options and figure out which one is best for her.

She will be doing this all on her own at 18, so from 15-17 you're really practicing for that. Once she is 18, there will be bumps in the road - some big and some small. She will learn from them and hopefully you will be there to help her when she makes the wrong decision, which she will from time to time.

But right now, at 15-17, it is your job to prepare her for taking over her own care. That means thinking about everything that could be impacted by IBD - including her diet. Understanding WHY she can't eat fried food and sugar all day.

Her decision actually does make sense to me because it sounds like she has tricky veins which are probably scarred from so many infusions. You don't want them all to get scarred, so less frequent infusions make sense.
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
04-22-2018, 01:09 PM   #8
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They do not need a biopsy, only doing scopes to find out where she is losing blood from since Iron infusions not making a difference.
They may be looking for bleeding, but they will still do biopsies (or they should - that is standard for IBD). Biopsies will tell them where all the inflammation is (sometimes it isn't visible but will show up on biopsies), where it is acute inflammation or chronic inflammation or both, and how severe it is.

Biopsies are very important for Crohn's and are done with every scope. At our hospital it takes a week to hear back about the biopsies and to get the scope report.

If they do find where she is bleeding from, they will probably tell you that right after the scope. But the biopsy report showing where all inflammation was present and how bad it was, won't be ready for a week or two.
04-22-2018, 01:12 PM   #9
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Oh and prep should be the same - Miralax and Dulcolax. Since she is bigger now, she will probably need more. My daughter has the whole bottle of Miralax and I think 4 Dulcolax (though I could be wrong about that - it's been a while).

It is mixed in Pedialyte or Gatorade. You can choose any flavors except certain colors - usually red is not allowed, and some GIs don't allow purple either.
04-22-2018, 07:13 PM   #10
Senior Member
My daughter is 13, but I've always tried to give her control when making decisions about her health. SubQ infusions (at home) would've been far more convenient for me, but she was more comfortable doing IVIG so we stuck with that as long as we could. She's refused allergy skin testing more than once. Obviously some things are non-negotiable, but I do my best to prepare her to navigate this system alone once she's an adult. It's her body and she has to learn how to take care of it.
A is 13

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies, Intestinal Lymphangiectasia

Treatment: Hizentra, Advair, Zyrtec, Cellcept
04-23-2018, 01:13 PM   #11
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Join Date: Jun 2011
Location: Ontario

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Yep, agree with above. My son was diagnosed just before his 17th birthday, so not a lot of 'prep' time before he became an adult. But, over that time, and still today, I tell him what I learn, explain the implications and, when he has a decision to make, I give him as much info as I can. Sometimes I tell him what I think he should do, sometimes, when there's no 'right or wrong', I just tell him the risks/benefits with both and tell him neither of us has a crystal ball, so he has to decide what's right for him.

If you ask her 'why' she wants to do things a certain way, will she have a real discussion about it? If yes, once she tells you her reasons, can you tell her yours? ie have a back/forth conversation about it? I know sometimes, something as easy as having a conversation, can be difficult. :hgug:

I haven't always agreed with my son but, as long as I believe that he's making an 'educated' decision, then I do feel that I must respect his decision.

Also, be careful with trying to win all battles. We all know how quickly teens can dig in their heels and be stubborn. If it's a battle you can afford to lose (ie higher dosage vs frequency), then it's an easy one to let them 'win'. Save your strength for the really important battles.

And, it does often help to have the dr give the 'advice'... seems like teens often listen to them more than to us lowly parents.

There are things my son did and still does that I don't always agree with (not only crohns but with other health issues) but as was said above, as much as they need to learn to manage their own health, we need to learn to accept what we can't control. It's not easy...
Tess, mom to S
Diagnosed May 2011

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
04-29-2018, 07:46 PM   #12
Lady Organic
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Location: Quebec

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Here is an interesting article about children consent to medical treatment in Canada.

''On the issues of minors and consent to medical treatment, the Supreme Court of Canada has endorsed the ďmature minorĒ doctrine[4]. In these provinces a child of any age is capable of providing consent if they have the maturity, intelligence and capacity to understand the nature and purpose of the proposed health care, along with the ability to appreciate the reasonable foreseeable consequences of such a decision.''

I used to think 14 was the legal age of consent of any decision, it seems not that clear cut, i am quite surprised. This is such a delicate issue and I can only imagine how emotionally difficult it could be in case of a disagreement between parents and the child on care or treatment.
''UC-like Crohn's'' (2001)
wrists + ankles arthropathies (2013)
on: 50mg 6-MP (Purinethol)+ B12 shots

Diet: ''IBD-AID'' : organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA (pill, rectal), cortifoam, Imuran, Purinethol, methotrexate.

Last edited by Lady Organic; 04-30-2018 at 03:59 AM.

Crohn's Disease Forum » Parents of Kids with IBD » Hospital Wants to Let 15 Year Old Make Own Decisions on Treatment
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