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Teenagers

Parenting teenagers has its ups and downs. Get advice from Mumsnetters here.

Original poster

mums of teens with chronic illness support thread

109 replies

morningsun · 16/01/2009 12:06

Hi,Im morningsun,new to mums net and mum to a 15 yr old dd diagnosed with severe crohnsdisease/ulc colitis a few months ago.
As it has had a lot of effect on her well being[emotional and physical],schooling and us as a family as well as the tests,clinic appts and health issues I'd like to start a thread for anyone in a similar situation,to exchange tips and chat about difficulties etc
So welcome!

OP posts:
optimisticmumma · 22/01/2009 09:50

Hear, hear

preggydonuts · 22/01/2009 10:23

If you have any questions I can help with don't be afraid to ask. I just try to find the humour in the illness. Also you can get help from various support groups. My major concern is the toilet situation and I now have a card I can use in any shop so that I can use the staff toilet.

saint2shoes · 22/01/2009 10:50

optimisticmumma cerable palsey(not chicken pox)

Original poster
morningsun · 22/01/2009 13:51

Hi 2shoes,preggydonuts and everyone.
cory, thats great about the ballet,good idea.
preggydonuts~thanks for posting and you are really inspiring to cope as you do.
The problem with my dd is the trauma of being desperately ill ,as well no doubt as the long recovery she had after her initial illness and diagnosis,has caused psychological upset.Previously happy and confident she is miserable and anxious.Her counsellor at school did a dep/anxiety test yesterday and she was borderline for depression,13 in anxiety.
She didn't sleep all last night.

Any comments/advice appreciated today.

OP posts:
preggydonuts · 22/01/2009 13:56

Hi
When I had my first major bowel resection which has left major keyloid scaring I had terrible depression. I don't think the nature of the illness is very helpful either as you long for the remission. Maybe ask her what her specific concerns are? I always try and focus on a holiday or something when I am due to go in for agressive steriod treatment.

optimisticmumma · 22/01/2009 15:45

Hi morningsun.
We are using a human givens counsellor at moment. Really like their ideas. Just google 'human givens' and it will give you an idea. Deals with now and tomorrow rather than dwelling on stuff in past too much. Have found it very good.

Am thinking of you.

Original poster
morningsun · 22/01/2009 22:22

thanks preggy and optimistic
have looked at human givens website there is a practitioner fairly near here

OP posts:
optimisticmumma · 23/01/2009 08:21

Morningsun, hope you have a better day...

Original poster
morningsun · 23/01/2009 10:40

thanks optimistic,feeling more positive today.She had floods of tears last night over going out,when she had only got into school at 1 pm. We let her go out in the end.Today she went in slightly late and is going dancing tonight,which i think is fair
Have started reading "How to talk so teens will listen...", communication seemed to go better this am.
I'm a really good parent with small children,but find this age more difficult ...
I'm usually quite understanding but find conflict difficult...
[mental note must try harder]

OP posts:
Saggarmakersbottomknocker · 23/01/2009 11:01

Hello ladies. Welcome to mumsnet morningsun.

I ahve a 15 year-old dd. She has a congenital disease of her left coronary artery among other cardiac related problems. She was off school yesterday as she was exhausted but has gone in today I think it's quite difficult parenting a teen with chronic health issues (I have two older boys) and it's good to share experiences.

Cory - we've spoken in the past I believe - that's good news about the ballet. Finding a hobby that they can do and be successful at is really important I think. Helps them not to feel so isolated. dd has taken up photography.

morningsun - my dd doesn't sleep well and gets anxious. We had tears yesterday as she knew she wasn't fit for school but feels under pressure to do well work-wise (not from me). Can her consultant help with a psychology referral if you felt the need?

cory · 23/01/2009 13:36
optimisticmumma · 23/01/2009 14:49

Cory - wow! At least it's weekend now! You sound like you've had a great week

Hi saggarmakers, nice to meet you. It is nice to share experiences , I agree...

cory · 25/01/2009 12:44

Hope you're all having a relaxing weekend.

A little the worse for wear myself as both nights have been disrupted by dd's earaches and the days in between taken up by ds who's had a temperature and been sick.

Conference tomorrow and job interview later in the week. And I'm feeling like a new mother: the same total absence of freshness.

optimisticmumma · 25/01/2009 18:04

Good luck for tomorrow. Do you just have to be at conference or are you running it???If the former at least you can enjoy some time out and pretend you're listening!! Know what you mean about the new mother bit =- I feel like I've got a dependent baby again and feel so mean when I resent it.So hard to keep a sense of self isn't it?

cory · 25/01/2009 18:20

Just giving a paper, it's not too bad, really. Just that I'd want to be really bright and enthusiastic as the interviewing people will no doubt be there to hear me in action.

optimisticmumma · 25/01/2009 18:37

Sure you'll be fine as adrenaline takes over. Bath, bed, early night. Fingers crossed no more sickness or earache! DH on duty? Good luck.

cory · 25/01/2009 22:30

Thank you.

And hoping everybody on the thread has a good week.

Original poster
morningsun · 26/01/2009 12:10

Hi all, hope you had good weekend!
Hi saggars thanks for posting,good suggestion about referral, it might be quicker via the paeds,may do that if her low mood continues.Its a shame we changed teams to a more local set up becos there are not so many people in the team[specialist nurse etc]now.I do think she feels less supported in that way.

I have made some changes which have helped a bit over the weekend.
I realise i have been asking questions and talking at her a lot [out of anxiety i think] so am now speaking less,but stating how i feel and what i expect from her instead of telling her what to do/not to do.
It seems to put me more on her side instead of opposite side iyswim.
I also gave her my book on anxiety to read[human givens] and she seemed quite pleased.
She had a nice weekend and slept better last night

Hi cory hope presentation and interview go well despite lack of sleep!

Hi om,how's your dd today[and you of course!]

OP posts:
Saggarmakersbottomknocker · 26/01/2009 18:28

I'm doing that a bit morningsun - dd is due in hospital at half term and I know I'm bombarding her a bit with questions/suggestions. I just need to shut up TBH and deal with my PAT (pre appointment tension ) in another way. Sometimes you just have to let them know you're there for them but step back a little. Tis hard though.

optimisticmumma · 26/01/2009 19:01

Hi all. So hard to shut up isn't it??I find myself asking my DD how she's feeling about a million times a day. Top tip from HG counsellor: 'Fix two times a day to 'check in' with your DD if she's not at school/ill etc and then drop it in between'. We are trying....
Thanks for asking Morningsun - am fine today as my DD has gone in for 4 lessons. Big ask for her as she had 2 good days over the weekend and inevitably has overdone it.
Fingers crossed for tomorrow. Love and hugs to all the DC on the thread!

optimisticmumma · 26/01/2009 19:04

Hope conference went OK cory and nobody 'took some time out' during your paper. Good luck for job interview...
Hope DC are OK today

Original poster
morningsun · 26/01/2009 19:10

lol PAT
thats so apt!

OP posts:
nickschick · 26/01/2009 19:15

Can I join in?

I have 3 sons the middle one is 13 and is undergoing tests to confirm M.E.

Original poster
morningsun · 26/01/2009 19:15

thanks om

OP posts:
optimisticmumma · 26/01/2009 19:31

Hi nickschick. My DD is 13 , 14 in April and has had CFS/ME for 18 months now. I really feel for you. I think you posted on the CFS thread but don't think I responded - So,so sorry How are you coping and how bad is your DS? My DD also middle one!Post back...