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Sick but non-compliant teen


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#1 amdirel

Posted 23 August 2019 - 08:50 AM

Argh she's driving me crazy! 14yo is so frequently sick. She's had about 13 days off school this year, and is a frequent flyer in sick bay (a few of those days off though were for reasons other than sickness). She does have some mildly bothersome health conditions, but combine it with a bit of anxiety, they're very bothersome to her.
Problem is, she's pretty non-compliant with her meds (which to be fair, would only help relieve symptoms somewhat, not take them away), and although her specialists have suggested she could have dietary intolerances, she refuses to try an elimination diet. But I really think it would help tremendously.
She was seeing a psych a couple of years ago but she moved away, google says to the other side of the city (ie far). We did try a new psych this year but DD insisted she was fine, and didn't talk hardly at all.

WWYD? I don't know that there's much I really can do tbh, I mean I can't force her to do things, right? She's really really stubborn, has been all her life. Maybe this is more of a vent...

#2 EsmeLennox

Posted 23 August 2019 - 09:14 AM

I’d try and find a way to get her to see a psych. Or see one yourself to get strategies that you can apply at home around her anxiety. It sounds like the anxiety is a factor in the time off school and this would worry me. I’d be concerned that it might snowball into a much bigger situation of school refusal.

#3 SM3s Fight Song

Posted 23 August 2019 - 09:16 AM

Might be a totally useless suggestion, but would a reward for seeing a psych or trying an elimination diet work.  Dd has anxiety, but much younger so obviously no idea what works for teens, but anxiety is a b**ch.

#4 lucky 2

Posted 23 August 2019 - 09:44 AM

Im relating to this, my 14yo dd could do with some extra help with anxiety but refuses.

I've never really tried bribery but I might give it a go.

At least you can vent here. :)

#5 MooGuru

Posted 23 August 2019 - 09:56 AM

Is she able to articulate what stops her being compliant or what motivates her to be non compliant?

#6 amdirel

Posted 23 August 2019 - 11:21 AM

View PostMooGuru, on 23 August 2019 - 09:56 AM, said:

Is she able to articulate what stops her being compliant or what motivates her to be non compliant?

Oh yes, there's an excuse for everything! Meds for her gut- are sickly sweet (true) and makes her feel sick. Tablets and inhalers- she forgets or can't be bothered to take. Elimination diet- too restrictive, her diet is already limited, socially awkward and embarrassing if eating out (true). Everyday general anxiety- under control, some normal worries only (mostly true). Health anxiety- she gets very insulted- she says she IS SICK and why don't I ever believe her?? (I do believe her symptoms, I just believe they are made intolerable because of her anxiety).

Edited by amdirel, 23 August 2019 - 11:24 AM.


#7 amdirel

Posted 23 August 2019 - 11:23 AM

Double post

Edited by amdirel, 23 August 2019 - 11:23 AM.


#8 purplekitty

Posted 23 August 2019 - 11:51 AM

View Postamdirel, on 23 August 2019 - 08:50 AM, said:


She was seeing a psych a couple of years ago but she moved away, google says to the other side of the city (ie far). We did try a new psych this year but DD insisted she was fine, and didn't talk hardly at all.

How far is the other side of the city.
Having a psych who your daughter connects with is helpful and anxiety is associated with IBS (if that is what she has).

Your daughter has IBS it sounds like and it is unpleasant and inconvenient.

Osmotic laxatives like lactulose are unpalatable and the side effects aren't nice either.
I think people,including the medical profession,don't always don't take it seriously because it doesn't have serious health consequences but the symptoms are very real.
I can understand your daughter might see this as being ignored.

If she is on prophylactic inhalers I would be pushing the absolute necessity of those.

I don't know how to force a teenager to comply with medication though.

#9 Not Escapin Xmas

Posted 23 August 2019 - 01:29 PM

Poor kid. She might actually be in a lot more pain than you think.

By the time I was formally diagnosed with eosinophilic oesophagitis, I was just used to everything hurting ALL THE TIME.

It turns out I wasn't just a sook, or anxious, or whatever, I was actually in considerable pain.

My mum didn't really believe me either. It wasn't until I was an adult and able to advocate for myself that I started trying to investigate things, and I was 38 when diagnosed.

I was always sick with random things too, I totally get it. Everyone, including me, thought I was just a precious petal. Actually I'm bloody tough! My baseline of pain was just so much higher.

I now live on a very restricted diet. Yes, it sucks. I take ADs to make it easier to cope with. I also meditate every day which helps with the pain management.

So OP, not quite sure what I'm saying here, aside from you really need to believe her about the pain she's in, and not just brush it off as teenage angst. Even if it is teenage angst, she's going to feel more comfortable talking to you about it and that in itself might help with getting her to consider the elim diet.

#10 amdirel

Posted 23 August 2019 - 02:50 PM

Thanks purplekitty and not escapin xmas. Just to be clear, I DO believe her, and her medical team do believe her. There is no problem there. But we all agree her physical symptoms are worsened because of anxiety.

But as I said, that's not the problem. The problem is she is offered treatments, we go to all the appointments and get all the scripts, and she gradually refuses them. Everyone recommends an elimination diet, but she won't do it. Then complains every day that she's sick!

She does have EoE, and IBS was also mentioned at her last appointment as a likelihood.

Purplekitty- not lactulose, pulmicort slurries. Gross lol.
Re the psych, if google is correct, the psych is an hour (or more, through hideous traffic) away. We have such a tight schedule though, I don't know how we'd fit in something that will take 3+ hours. I don’t want her to miss more school. Even a Saturday would be challenging, but I might call them to see if she does Saturdays, then discuss with DD if she wants to see her again. I have no doubt her fees would be astronomical too, in the area she's now in.
We're back at the gastroenterologist next week for scope results. If she mentions IBS again and also if her biopsy is positive again, I might have a good chat with DD again about going back to the dietitian or allergist to discuss elimination diet, and also the fact that a psych can be useful for IBS.

Not that I haven’t had these chats before. Hence the reason for my post. I already know what I need to know, I just can't get her to comply! She says she just wants to be normal. Poor love.

#11 purplekitty

Posted 23 August 2019 - 02:58 PM

With the Pulmicort what sweetener is she using,could she try a different one?

I'm sorry you've probably tried everything and I'm telling you things you already know.
It's a difficult age without the overlay of medical issues.

#12 Prancer is coming

Posted 23 August 2019 - 03:05 PM

I think I would try and take the line that if she is sick enough that she needs a day off school, then she needs to be taking her meds and doing things to help herself.  And if she needs another day off, we need to go back to the dr and try another psych given anxiety makes it worse.

Not quite sure what the health issues are and if the meds are essential or just helpful.  My kid has coeliacs and a fit issue.  We have always been really strict around no gluten, but whilst dairy upsets her, we have left it as her choice whether to eat dairy.  With her foot issue she is meant to take anti inflammatories at the first sign of pain.  She can be terrible with that, or just has one a day instead of two.  So I pretty much tell her if she is not complying, not to expect sympathy or special treatment from me.  

Does the school have a counsellor you can see?  That could be easier.  Or if anxiety is a big issue, I would have no qualms pulling her out of school to see a counsellor she likes.  I doubt the issue will go away on its own, so time off now will hopefully mean less time off later.

#13 amdirel

Posted 23 August 2019 - 03:16 PM

View Postpurplekitty, on 23 August 2019 - 02:58 PM, said:

With the Pulmicort what sweetener is she using,could she try a different one?

I'm sorry you've probably tried everything and I'm telling you things you already know.
It's a difficult age without the overlay of medical issues.

Equal. Also a while she liked a combo of Equal and strawberry Quik. It was very sweet but she said at least it had a nice flavour. We tried a few different sweeteners but those 2 were the only ones we found that dissolved into a smooth slurry, the others all stayed very crystallised.

#14 Not Escapin Xmas

Posted 23 August 2019 - 03:18 PM

OK, if she has EO, then this is what I would suggest:

1 - try to reduce the salicylates. You can do this without ruining her life. This should reduce the anxiety a bit.

2 - get her onto ADs. Even if just through GP. I can't tell you the difference that it makes. It just makes everything a bit easier. And when the basics are hard, that's super important. Ask me how I know!

3 - meditate every day. I listen to guided meditations by Malcolm Huxter. He is Australian which I think helps because his accent is so 'normal'.http://www.buddhanet...-meditation.htm My go-tos are Body Scan and Calming the Body with the Breath.

If you can do all/some of above, then compliance with meds etc should become easier because it won't be such a battle.

PS: are you in the facebook groups for EOE? If your daughter could meet some other kids in the same situation, I'm sure that would help. It's definitely helped my DD :)

Feel free to PM me if there's anything I can help with. I'm happy to have a chat/skype if that would be useful. I really do understand how completely sh*t it is.

ETA for typos.

Edited by Not Escapin Xmas, 23 August 2019 - 03:18 PM.


#15 amdirel

Posted 23 August 2019 - 03:28 PM

View PostPrancer is coming, on 23 August 2019 - 03:05 PM, said:

I think I would try and take the line that if she is sick enough that she needs a day off school, then she needs to be taking her meds and doing things to help herself.  And if she needs another day off, we need to go back to the dr and try another psych given anxiety makes it worse.

Not quite sure what the health issues are and if the meds are essential or just helpful.  My kid has coeliacs and a fit issue.  We have always been really strict around no gluten, but whilst dairy upsets her, we have left it as her choice whether to eat dairy.  With her foot issue she is meant to take anti inflammatories at the first sign of pain.  She can be terrible with that, or just has one a day instead of two.  So I pretty much tell her if she is not complying, not to expect sympathy or special treatment from me.  

Does the school have a counsellor you can see?  That could be easier.  Or if anxiety is a big issue, I would have no qualms pulling her out of school to see a counsellor she likes.  I doubt the issue will go away on its own, so time off now will hopefully mean less time off later.

Thanks. I have said all these things before. She does know that if she wants to go back to whatever health professional, I am happy to take her. I've told her if it's at the point of interfering with her life, she should seek help. Maybe I should be a bit more firm with that. And no, no way would she see the school counsellor!

#16 purplekitty

Posted 23 August 2019 - 03:30 PM

View Postamdirel, on 23 August 2019 - 03:16 PM, said:

Equal. Also a while she liked a combo of Equal and strawberry Quik. It was very sweet but she said at least it had a nice flavour. We tried a few different sweeteners but those 2 were the only ones we found that dissolved into a smooth slurry, the others all stayed very crystallised.
People use honey,chocolate syrup,apple sauce etc.
Anything I suppose to make it palatable.

Low dose ADs are also used in IBS.

#17 amdirel

Posted 23 August 2019 - 03:35 PM

View PostNot Escapin Xmas, on 23 August 2019 - 03:18 PM, said:

OK, if she has EO, then this is what I would suggest:

1 - try to reduce the salicylates. You can do this without ruining her life. This should reduce the anxiety a bit.

2 - get her onto ADs. Even if just through GP. I can't tell you the difference that it makes. It just makes everything a bit easier. And when the basics are hard, that's super important. Ask me how I know!

3 - meditate every day. I listen to guided meditations by Malcolm Huxter. He is Australian which I think helps because his accent is so 'normal'.http://www.buddhanet...-meditation.htm My go-tos are Body Scan and Calming the Body with the Breath.

If you can do all/some of above, then compliance with meds etc should become easier because it won't be such a battle.

PS: are you in the facebook groups for EOE? If your daughter could meet some other kids in the same situation, I'm sure that would help. It's definitely helped my DD Posted Image

Feel free to PM me if there's anything I can help with. I'm happy to have a chat/skype if that would be useful. I really do understand how completely sh*t it is.

ETA for typos.

Thanks so much for the advice! Is the salicylates in regards to the EoE or the anxiety? Most of her diet is very high in salicylates!! She has a limited diet based on what doesn't make her feel nauseated. I'll look into the meditation stuff again- I had her download an app a while ago, I think Smiling Mind? As for fb groups, I follow the AusEE page but that's the only one I've heard of.

#18 amdirel

Posted 23 August 2019 - 03:42 PM

View Postpurplekitty, on 23 August 2019 - 03:30 PM, said:

People use honey,chocolate syrup,apple sauce etc.
Anything I suppose to make it palatable.

Low dose ADs are also used in IBS.

Oh ok, her doctor has not mentioned any of those things as an alternative. She might be ok with choc syrup. Anyway, she's taken herself off the Pulmicort at the moment, hence the repeat scope to see if she can indeed stop the medication, or should restart. She's done this before, and wasn't successful. I don’t know how she'd feel about AD's. Which health professionals are best for IBS management?

#19 purplekitty

Posted 23 August 2019 - 03:49 PM

View Postamdirel, on 23 August 2019 - 03:42 PM, said:

Oh ok, her doctor has not mentioned any of those things as an alternative. She might be ok with choc syrup. Anyway, she's taken herself off the Pulmicort at the moment, hence the repeat scope to see if she can indeed stop the medication, or should restart. She's done this before, and wasn't successful. I don’t know how she'd feel about AD's. Which health professionals are best for IBS management?
Gastroenterologists.

The dispensing pharmacist should be able to help with suggestions of sweeteners to mix with the Pulmicort.

#20 amdirel

Posted 23 August 2019 - 04:21 PM

View Postpurplekitty, on 23 August 2019 - 03:49 PM, said:



The dispensing pharmacist should be able to help with suggestions of sweeteners to mix with the Pulmicort.

I've asked them before and they've had no idea! They only just look up the instructions, which only ever says Equal. Anyway I've just had another chat to her as she was in a good mood, we've agreed to see the gastroenterologist as planned next week, then go back on pulmicort if needed, see a dietitian if needed just to ENQUIRE about an elimination diet  (she flat out said NO when I mentioned it, but I told her we could go to ENQUIRE about it first lol), and I also mentioned about IBS being a possibility and told her it can go hand in hand with anxiety. Just to plant the seed in her mind about the anxiety, because she truly thinks her anxiety is perfectly under control. I also reiterated that if she's sick of being sick, we can seek further help, but she's got to be willing to follow the treatment. She had nothing to say to that, just groaned. So I can see we may just end up back at square one, but it's always worth another shot!

Edited by amdirel, 23 August 2019 - 04:21 PM.


#21 halcyondays

Posted 23 August 2019 - 04:26 PM

Would her psych do a Skype consult?

#22 amdirel

Posted 23 August 2019 - 04:28 PM

View Posthalcyondays, on 23 August 2019 - 04:26 PM, said:

Would her psych do a Skype consult?

Ooh I don't know! That's a great question! I shall ask.

#23 purplekitty

Posted 23 August 2019 - 04:57 PM

View Postamdirel, on 23 August 2019 - 04:21 PM, said:

I've asked them before and they've had no idea! They only just look up the instructions, which only ever says Equal.
That's a bit disappointing.
There used t be a great drug information service that was available to the public but it was defunded.

#24 amdirel

Posted 23 August 2019 - 05:00 PM

View Postpurplekitty, on 23 August 2019 - 04:57 PM, said:

That's a bit disappointing.
There used t be a great drug information service that was available to the public but it was defunded.

The first time I asked them they looked at me like I was an idiot and told me I had to hire a nebuliser!! Very disappointing!

#25 purplekitty

Posted 23 August 2019 - 05:03 PM

View Postamdirel, on 23 August 2019 - 05:00 PM, said:

The first time I asked them they looked at me like I was an idiot and told me I had to hire a nebuliser!! Very disappointing!
That's a lot disappointing.




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