Trouble with my daughter

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

upsetmom

upsetmom

Joined
May 28, 2012
Messages
3,186
Location
,
My daughter is convinced that the medication she's taking is making her sick. Unknown to me she's been skipping her tablets for a few days here and there. Her pill box is always up to date so l thought she'd been taking them. On the days she hasn't taken them she said she felt so much better, so she's decided to stop all together. I've been trying to convince her to take them till we see the GI next week, but l can't seem to get through to her.
 
Oh no! How long has she been on these meds? When did they supposedly start making her sick? So hard when they are teens! Luckily you have an appointment coming up pretty quickly.
 
Is your daughter's GI good at dealing with her? My teen has also been difficult but luckily she (mostly) listens to her GI and when her GI says she has to do something (NG tube for example) she does listen.
Sending hugs, teens really are SO difficult sometimes!
 
Big hugs
I so dread the teen years coming soon
Which is why I loved remicade
Humira at least I know when the injections are since I give them for now ...
 
Shes been on them for a long time. Shes been getting daily pain and diarrhea more often lately, so she's putting it down to her meds not her crohn's.
 
Maya she listens to the GI so l'm glad her appointment isn't far away. I tried ringing the nurse, but she's not back till tomorrow.
 
Makes sure the GI knows she is not taking the meds before the appointment so they are ready for the treatment option discussion.

My daughter has been much better taking her medication since the discussion with GI as why the GI believes no medication was a bad option for her.
 
I also am not looking forward to teenager years.
I do hope the GI can get her to understand why it's important to take her meds.


Hugs
 
I'm a crazy hippie so I would be listening to the child and respecting her feelings. Maybe she just needs a few days off to clear her head. I'd support her, keep negative stress to a minimum, letting her feel a little control over her situation can make a huge difference to health, and see what happens in a few days. Medications can and do fail at times. Sometimes the body just needs a rest for a week or so.

Maybe make a deal with her to take them every other day?

I say this because my own daughter(adult) was getting negative benefit from taking iron, but a dose every other day works fine for her.
 
M woke up today saying her stomach was sore and grumbling all night, l told her it couldn't be the tablets because she hasn't taken them for 4 days.

Nym as she's nearly an adult l do try and respect her feelings, but l also remember how sick she got before she was diagnosed. So it's a bit hard to sit back and watch.
 
:ghug::ghug::ghug:

I am so sorry to hear this upsetmom. :(

It is good to hear that have you have a GI appointment next week. :)

I personally feel that ultimately if anyone can change her mind at this point it will be the GI.

I have been though this with my daughter, Year 12 at the time, and lord knows it is hard. As they say, you can lead a horse to water but you can’t make them drink. At this age there is only so much you can do as you know. I listened to Sarah, allowed her to vent and validated her feelings but I also had to be open and honest and tell her how felt about her behaviour, lay the facts on the line as far as this disease is concerned and give her resources to make an informed decision. Above all else I told her no matter what she chose to do that I would always be here for her and that there was no shame or I told you so’s should she find that she had made the wrong decision in not taking her medications.

I know how hard it is to sit back and watch mum :ghug: and I think I reached a point in our case where keeping the lines of communication open were just as important an issue as the meds were. It did all turn out well in the end but I must add here that my lass was in remission and stayed that way so I wasn’t seeing what you are. :ghug:

Good luck hun. Thinking of you and wishing much luck and well wishes. :heart:

Dusty. xxx
 
DustyKat said:
:
Above all else I told her no matter what she chose to do that I would always be here for her and that there was no shame or I told you so’s should she find that she had made the wrong decision in not taking her medications.
Click to expand...

I want to be YOU when I grow up!
 
Hugs :ghug: It is so tough and frustrating. Glad you have GI apptmt soon! I, too, think she'll most likely listen to the GI.

I try to do as Dusty does, strongly explain the consequences, let my son know that I would hate for him to have a relapse but, in the end, I can't follow him every moment and, as much as it will hurt me to see him suffer, he will be the one feeling and living with the consequences. My son does listen to me, my daughter though (without crohns but in other health issues), doesn't listen as much and I sometimes have to accept that she has to learn things on her own. :(

It's really tough letting them make these sorts of mistakes though... :ghug:
 
I did the same with my first iron sup. it made me feel horrible so I stopped taking it. It wasn't helping much anyway and before I stopped taking it I needed an iron infusion. When I told my GI he reccomended a different brand that is more expensive but doesn't make me feel sick. Not the same severity as your daughter but it you are convinced something is making you worse it's hard to keep taking it. I hope the GI can figure out a plan maybe a compromise.
 
One of my daughter's doctors (ped. rheumatologist) allowed her to skip a week of methotrexate to check if it was truly making her sick. She had been getting nauseous and dizzy on weekends and she took the shot on Friday. When she skipped it, she was fine and had a great weekend. Then her rheumatologist convinced her to try a lower dose for a while since she obviously was having real side effects. M agreed. Eventually the MTX was discontinued but I still remember how grateful my daughter was that her doctor believed her ,was willing to listen to her and wasn't just going to yell at her.

A good doctor can make all the difference in the world!
 
So with you there! We are having a similar situation, my daughter weaned herself down to 15mg of pred. Without telling me because she hates it. I am fighting with her about it but she won't listen. Hoping the GI can get her to when we go.
 
It didn't take long for M to start getting sick, l heard her get up a few times throughout the night.

Tonight after dinner l watched her take her tablets. I didn't say anything, l think l'll leave it up to the GI...she won't listen to me anyway.
 
Oh boy! I had this issue too. D was feeling good and thought she could skip. I found out and now she takes them most days in front of me. Don't know how long this will last but having a teen is hard!!
 
I don't know how it actually works on here with kids with crohns but it must be difficult as parents being able to get through to your kids regarding meds etc.

As an adult I cannot imagine not using this forum among other resources to serve as asounding board and support mechanism as no matter how decent parents are, kids with crohns may need to hear from others with crohns as well.

How does it work with the parents here with kids?
Do you just use this forum as adults for info yourselves or do your kids get to talk to others with crohns about their condition so that they can value the advice more due to it coming from people facing the same situations?

I cannot imagine being a child with crohns without others to talk to in the same position :(
 
wellen1981, there is a teens forum and young adults thread on here for those groups. Teens are usually not ones to discuss these issues publicly to begin with. But there are also CCFA camps for kids with IBD as well.

My son is fairly open about his illness and he has had the benefit of discussions with other IBD kids at his infusions.
 
Clash said:
wellen1981, there is a teens forum and young adults thread on here for those groups. Teens are usually not ones to discuss these issues publicly to begin with. But there are also CCFA camps for kids with IBD as well.

My son is fairly open about his illness and he has had the benefit of discussions with other IBD kids at his infusions.
Click to expand...

Hopefully I would like to think even if young crohnies dont post on here, that they do find some of the posts on here a help from other sufferers.
 
Oh boy, speaking from experience, it is hard when a child or even young adult devices to stop taking meds. Been there, done that, and ended up in the hospital more than once. I finally grew up enough and took responsibility for my health and while I don't like having to take a medication, I know that I would not have full life I have now if it wasn't for my meds.
 
We went to see the GI today and l told him how M had been experimenting with her tablets. He told her your basically an adult now and no one can make you take them if you don't want to.... but if you don't take them you could end up in hospital very sick.

M is still getting daily pain, but still no medication change instead we're trying Flagyl for 6 weeks. And he told to expect a few flares this year as shes in year 12.
 
Upsetmom, I hope she gets back on track!

Jmrogers4, you are absolutely right. It's one of the main reasons I hate C is probably leaving remicade. He doesn't mind the infusion, I know he's getting his med and blood draws are a bonus. I, in some ways, dread Humira because it sorta lends itself to non compliance. It's a self injecting painful shot that you have to remember to give yourself every two weeks. I feel this is going to be a comedy of errors and excuses once C goes to college(not to mention remembering to go by and get lab work with me nagging him daily) that is going to lead to the tragedy of non compliance and flares! Ugghh!
 
Hope the flagyl and doctor talk helps her see the light
I know I can say things over and over to my oldest and get nothing
Doc says one thing and suddenly no more issue .
 
upsetmom said:
And he told to expect a few flares this year as shes in year 12.
Click to expand...

*Hugs* to you mum. :ghug:

I hope your lass takes note of what the GI has said and I hope the Flagyl helps!

Not sure what to think about his statement above though. While I can see what he is saying about stress and flares isn’t it just as much a testament that he doesn’t have your daughter well controlled (non compliance aside)?? What do you think?

Dusty. xxx
 
Dusty, she's not well controlled at all. He has mentioned a few times in the past that she was going to be changed to MTX if her symptoms didn't settle, but at our last visit there was no mention of MTX. I asked him how can we get her joint pain under control and he said we need to get her bowel under control and her joint pain would go away....so really he doesn't make any sense to me.

As she is moving on to an adult GI later this year l keep thinking maybe that's why he doesn't want to change...I don't know.
 
He sounds like he needs to stop sitting on his hands! :yfrown:

Perhaps the change can’t come soon enough. I know you have spoken about the change before but I don’t remember the conversation that well…was it possible for her to be seen sooner by the adult GI?

Dusty. xxx
 
Dusty she can be seen sooner. I think they take take on patients from 16. We have talked about moving on to an adult GI, but then she was diagnosed with ovarian failure so l thought it was probably best we stayed where we were as we see the endo there as well.
 
Ah yes, I remember now. Thanks. :)

I just hope with all my heart that your girl soon starts feeling better. :heart:

Dusty. xxx
 
Hopefully he got through to her but his statement about expected flares sent a chill down my spine. Why on earth would we set a patient up to expect flares? Aren't we supposed to be trying to prevent them? Not expect them?

When O had low hgb numbers her GP said, "Oh, well she has Crohn's so she is probably always low" My response was, "Not if her disease is under control it isn't! We shouldn't just expect sub optimal levels! We should investigate and get on it"
 

Similar threads

A
What would you do?
Replies
22
Views
2K
Delta_hippo
D
S
Chronic Fissure and now more than one
Replies
11
Views
2K
my little penguin
my little penguin
Papantoine
Neglect?
Replies
0
Views
236
Papantoine
Papantoine
R
Nearly 4.5 years in with Crohn's.
Replies
2
Views
1K
ras96mg
R
L
Newly diagnosed 15 year old UC awaiting MRI so could be CROHNS
Replies
4
Views
1K
Lady Organic
Lady Organic

Latest posts

Back
Top