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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!

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nickschick · 29/01/2009 18:56

lol optimisticmumma i have a 15 yr old 13 yr old and a 8 yr old....

optimisticmumma · 30/01/2009 15:49

nickschick, have just been on ayme website (google ayme) and under medical is has a symptoms sheet for ME. You might want to take a look. How is Sam? Is he OK after yesterday? My DD has done her 2 lessons and is being surprisingly biddable. Long may it continue

Cory - how did you get your DD on rehabilitation programme? Do most hospitals have a similar thing going or are you in London. Hope you don't mind me asking

Original poster
morningsun · 30/01/2009 19:48

Saggarmakers how's your week been and how is your dd?
My dd has been tired and gone in late a couple of days ,she tends to overdo it a bit with sleepovers and activities tho so its about getting that balance.
Have made an appt to see head of year on monday.

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nickschick · 31/01/2009 09:16

hi Optimisticmumma \o hi morningsun\o

Good news about your dd opmumma.
How do you manage to work around it?
Im currently a sahm but I will have to return to work at some point.

Sam wasnt very well really after school on Fiday hed insisted he was doing p.e and he was shattered when he got home was too tired to eat yet couldnt sleep cos he was hungry had something to eat eventually then was v irritable all evening lolling around the place.

optimisticmumma · 31/01/2009 14:13

Hope all DC have had a good week and are having a great weekend - huge sigh of relief all round!

Nickschick - work has had to take a backseat I'm afraid. I'm very lucky that my jobshare has taken over my mornings so that at the moment I only work 2 afternoons a week.If I could now choose what to do I would only work in the afternoons as by then we know what we're doing! Hope Sam is feeling better today

Good luck with head of year, morningsun, will be thinking of you.

Original poster
morningsun · 31/01/2009 21:53

thanks om will try to be her advocate without babbling incoherently if possible!

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cory · 01/02/2009 10:43

Optimisticmumma, the rehabilitation programme was at our local hospital (not in London). We were referred by dd's paediatrician, I think. I don't know if all hospitals have them; ours is a fairly large teaching hospital. Some children visited as outpatients, but dd stayed as an inpatient for nearly 5 weeks, so they could work through every detail of her day.

I am not sure how well you would have to be to attend the ME programme: I know they did work on establishing a daily routine (i.e. getting up for breakfast, going to bed at a set hour), so you would presumably need to be able to cope with that. Wasn't a problem for dd as the programme itself wasn't very tiring or stressful and very much about pacing.

optimisticmumma · 01/02/2009 11:28

Thanks cory. It's very interesting and I can imagine incredibly difficult for you to put your child into the hands of others for so long. Well done you! My DD is actually only mild/moderate on ability scales as she can function perfectly well at home but can't manage school at moment as it is too much. We are doing our own pacing but it is hard without outside support. I'm hoping she is being referred to GOSH or Kings but we won't hear anything for about 6 months so we carry on as best we can....
Have a good week.

cory · 01/02/2009 16:14

optimisticmumma Sun 01-Feb-09 11:28:11 Add a message | Report post | Contact poster

"Thanks cory. It's very interesting and I can imagine incredibly difficult for you to put your child into the hands of others for so long."

I hate to say it, but I couldn't wait for her to go in, optimisticmumma . We did so need a break, having struggled for 4 years with little or no support! Also, it helped that she is incredibly social and viewed it more or less as some sort of holiday camp. Anyway, it was in the same town, so we hired a car and went up in the evenings.

Original poster
morningsun · 03/02/2009 23:54

Hi everyone hope you're enjoying the snow!
Have not posted cos my dd has been unwell with fever and virus and have to attend dr with various minor ailments becos of her meds and becos they affect her more now.
Still she seems happier since our recent chats and the head of year just said she was basically a star pupil and good character etc and he's going to have a chat with her.He had noticed she looked uncharacteristically unhappy lately and i explained she still has health issues,frequent appts, fatigue and that she'd been worried and unhappy with all the turmoil and changes.So i think she feels they will still understand and not expect her to be better all the time.They were full of praise for her getting back to school so early last year but in a way going back so quickly and doing all her exams etc has contributed to her having extra things to cope with overall. It was almost like denial and the coming to terms thing has been gradual.
Anyway sorry so long it is helping me to process it in my own mind.At least i feel we're getting along well again and sorting thru some of the issues

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optimisticmumma · 04/02/2009 09:21

Hi morningsun, sorry DD has been unwell during the snow-what a shame. I think it's rather cheered us all up . It seems you've hit the nail on the head with what you say. My SIL who is type one diabetic says it was like a bereavement for her when she became ill and it was like a grieving process coming to terms with it - does that make sense? Also it's SO BORING and such a chore for a teen to have a chronic illness not only for them but also all their friends.I'm so glad school were good - it doesn't surprise me. I think we sit at home worrying instead of making the most of the systems they have and the support they can give. Also lovely for your DD to have head of year say that about her. Sorry for long post.

Taking DD for 2 lessons a day this week to see if we can preserve her improved levels....

cory · 04/02/2009 09:26
Original poster
morningsun · 04/02/2009 13:19
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optimisticmumma · 05/02/2009 13:33

Are you OK Nickschick?

nickschick · 05/02/2009 21:50

hiya op mumma

sorry to hear your dd hasnt been so well cory but lovely compliments from her head of year.

Im ok ty opmumma just getting along Sams tired but having had 2 snow days hes been able to rest a bit more.

I too see the sense in whats been said i rather think sam sees himself as 'faulty' now and im worried he just thinks thats it thats his lot.

optimisticmumma · 06/02/2009 08:58

That's the hardest part, Nickschick preserving self esteem I've probably said this before and sorry if I'm repeating myself but someone said to me that my DDs illness is not her. It's like a cloak that is masking her. So the cloak can come off right?
Have a good day. Hope Sam is having a good day.

Saggarmakersbottomknocker · 06/02/2009 22:59

Hi Sorry that your dd's been unwell morningsun - mine too. Off school with virus, but school was closed for a day anyway. She's also a bit brassed off because our pending hospital stay has been postponed for a week. She'd psyched herself up for it and is feeling a bit stressed now. Plus it means missing more school now as it was scheduled for half term.

Original poster
morningsun · 09/02/2009 23:58

Hi saggarmakers,sorry to hear your dd has also been unwell
do you find viruses affect her for longer than others in the family?
My dd had chest infection,then a virus and rash but has been really tired.
We had hospital appt today and i asked if she could see specialist nurse to chat with and we said she'd not been sleeping and had been worried,the consultant said she'd get the nurse to call her and had a chat about sleep routine etc,so that was good.I had to suppress a smile when she said not to go to bed late at the weekends!!Yeah right!
Part of problem is her reading up about her illness and getting frightened so the doc gave some reassurance today.
So she seems a bit happier at least,thats the main thing.

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Saggarmakersbottomknocker · 10/02/2009 18:55

Still off school here. dd does very well generally and manages to shake off most bugs pretty quickly. Just gets a lot of bugs.

Glad your dd is feeling a bit brighter today.

Original poster
morningsun · 12/02/2009 10:37

my dd off today,tired again but her dad was taken ill in the night rushed to hospital 2 nights ago and she stayed up to help and lookafter her little bro so proud of her for that.
Hope all of you and your dcs doing well

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optimisticmumma · 12/02/2009 12:15

What a week you must have had morningsun. Hope everything is settling down again. My DD has had a mixed week, but hoping she'll perk up tomorrow. Big hugs all round...

Original poster
morningsun · 12/02/2009 22:14

thamks om
thankfully things settling down now,my dh home tonight and my ds nose doesn't need op and dd tired but ok
a good nights sleep in order i think

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Original poster
morningsun · 17/02/2009 10:04

Hi all hope half term's going well
paed nurse is coming out to see dd ,thats good.
i've been in two minds about going back to the specialist centre with the whole team there, her consultant was excellent and pretty much the uk/europe top man and she felt very safe with him cos he basically got her thru the critical time.I think some of this anxiety is to do with changing teams to a smaller local set up.
I'll see how it goes with the paed[general] nurse first.
Hows your dd om?

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optimisticmumma · 17/02/2009 16:07

Doing very well We have made a BIG decision to do something called the Lightning Process. It is a very intensive training programme but we feel sure DD can do it and really excited about it - so am I!
Keeping EVERYTHING crossed!!

Original poster
morningsun · 18/02/2009 09:22

what is the lightning process om?

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