Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

Teenagers

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

Flip

1 2 3 4 5

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:

ajandjjmum · 16/01/2009 12:20

Hi morningsun
Can't be easy for you. I have a 15 year old dd, and sometimes struggle with the 'normal' problems we hit!
Is your dd very restricted in what she does?

Original poster

morningsun · 16/01/2009 12:31

Hi aj,thanks for replying
she has to remember her meds ,be aware of her symptoms[as it is a relapsing and remitting condition it flares up and dies down],know about her meds s.e.s which suppress the immune system,and pace herself as it is an exhausting condition.
In general,after the first severe illness she had she can do most things but a lot of activity takes its toll on her energy levels and moods etc.
How do you find 15 as a mum?Tricky age,really isn't it?

OP posts:

Original poster

morningsun · 16/01/2009 18:21

calling all mums caring for a poorly teen

OP posts:

optimisticmumma · 17/01/2009 19:27

Hi just found your thread. My DD who is nearly 14 has had CFS (Chronic Fatigue Syndrome-used to be called ME) for nearly 2 years now. I know how you all feel. VERY frustrating for whole family. Hugs all round...(smile)

Original poster

morningsun · 18/01/2009 00:21

Hi optimisticmumma
Sorry your dd is unwell too.
It must be difficult with schooling i guess~is she unwell a lot of the time?
Its a difficult age for them to deal with illness too isn't it?
chat to you tomorrowxx

OP posts:

optimisticmumma · 18/01/2009 19:51

Hi morningsun. Thanks for starting this thread. Yes it is very difficult as DD is well one and not the next for no fathomable reason. Just have to go with the flow, try not to worry and hope it will resolve itself. With CFS the difficulty is that the symptoms are relatively hidden and there is no cure or test to diagnose. We have to try lots of things...

Original poster

morningsun · 18/01/2009 23:14

Hi optimisticmumma,it must be difficult for you to know how her illness will progress.How long does CFS usually last for and is she improving?
My experience has been that missing school created problems with my dd's group of friends,which has been one of the most upsetting things for her.
Do you have a tutor for your dd or does she manage school?
Also is there a support group you can access for CFS?

OP posts:

optimisticmumma · 19/01/2009 10:12

Yes morningsun friends is an issue but she has very good ones from primary still. She just hasn't the strength for them at the moment but they are there when she wants them She is managing some school and school have been great so far. The trouble with the charity for CFS/ME is that she has this moderately believe it or not and she just doesn't want to be defined by CFS. Also when you talk to the charity lots of the children are bedridden in a wheelchair etc and have had this for years. I just don't want to go there....

Original poster

morningsun · 19/01/2009 11:36

Hi there om!I guess your dd must be yr9,mine is yr 11.
I think if they have health issue/miss significant schooling you can get 10% added onto gcses etc,my dd was against this at first but now am going to enquire at school.
Did a virus trigger this illness in your dd or was it out of the blue if you don't mind me asking?

OP posts:

optimisticmumma · 19/01/2009 20:08

Hi Ms , yes my DD is in Y9. Got a DS in Y11!Yes we think it all atarted with a virus. How is your DD today?

Original poster

morningsun · 19/01/2009 23:07

Hi om,she is good thanks.She thought she was getting ill so i'm keeping a subtle eye on things.She also has ds 2 yrs older and is middle child~she has always been very independent!

OP posts:

optimisticmumma · 20/01/2009 09:04

Hi MS. Glad things are going well for your DD. One of our mums at primary had same thing as your DD. She is amazing. In between bouts of illness she headed up PTA, organised Balls etc. I just looked back over postings and realised how all the chat is about my situation. Hope it's not putting anyone else off posting or you .Feel free to join us anyone else in similar situation . Hope you are finding this thread as supportive as I am MS!!

mysterymoniker · 20/01/2009 09:16

hello you two

I don't like to think of my daughter's anorexia as 'chronic' but I suppose it probably is - anyway, she was v ill throughout GCSE years and spent a lot of time in hospital, I think her illness and time off school was taken into account when she sat her exams. We agreed she would drop a couple of subjects to ease the pressure and her grades more or less reflect her actual ability so that was good - no idea how far, if at all, the marks were adjusted though? I remember having lots of discussions about it, she was phasing back to her home school from the hospital during the actual exams but I can't remember what was actually decided

She's in 6th form now and attendance is still variable but doing ok. Because she more or less maintains a more or less healthy weight her illness is all but invisible to outsiders, and I quite ruthlessly cut friends from my life who persisted in making ignorant comments such as 'oh good, has she grown out of that silly phase now?'

I couldn't deal with that at the time, even though I've realised I'm not above thinking similar things myself sometimes

cory · 20/01/2009 09:18

Well, I'm sort of lurking on the outskirts here: my dd is not quite a teenager (12) and her condition is a genetic disability rather than an illness, though it leads to a lot of illness, so I suppose that more or less amounts to the same.

Secondary school are very good about it- far better than the primary school - but I am a little nervous about the years to come, the pressure of exams and the anger when she feels she is missing out on part of her life.

optimisticmumma · 20/01/2009 09:45

Very reassuring MM. I suppose I feel that what will be will be but at the same time I want DD to achieve what she is capable of. I think CFS/ME does entitle her to extra time etc but we have 2 yrs yet. I agree about stupid comments. I get 'Why doesn't she go to bed earlier then if she's tired!' Duh! Some really great friends have actually done me the honour of researching DD condition so that they can talk to me with some understanding.
Cory - we've spoken before and I think teens should mean secondary school age! So no more lurking! It's great to talk to others who don't have chn doing the 'normal' thing...

Original poster

morningsun · 20/01/2009 11:39

Hi om,yes i am finding this thread supportive,its great to chat with you!
Hi mysterymoniker,sorry your dd has anorexia as part of her life at the moment~this must be very hard.My understanding of it[please correct me if i'm wrong ]is that it is basically an anxiety related condition.My dds weight was dangerously low in hospital so i can relate to those issues and had to follow liquid diet etc .She doesn't like to talk about her illness so i'm treading on eggshells atm.
Hi cory i was hoping you would post!I was worried about hijacking threads so started this one.
All welcome!

OP posts:

optimisticmumma · 21/01/2009 14:40

Hi everyone! How are we all today?? Supportive hugs all round !!

cory · 21/01/2009 16:48

Very very very excited!!! (=nail biting!)

Because I have booked dd in for ballet classes, starting this evening.

Physio agrees that this would be a good alternative to traipsing all the way up to the hospital for physio (1 hour on the bus, dancing school across the road).

Dancing school are going to be very very gentle with her & make sure she doesn't overdo it.

They are very very professional.

Only please, please, please- don't let her have a panic attack and start going into spasm before I've even got her out of the house!

This could be sooo good- dear God, please make it work!

optimisticmumma · 21/01/2009 17:03

cory...and breathe!....best of luck. Post back with the outcome.

cory · 21/01/2009 21:39

It worked, it worked, it worked!!!

She'll be ever so sore in the morning, because as far as I can make out she got carried away and did most of the lesson- she was supposed to start with 10 minutes and build up slowly.

But she did seem happy.

2tartanshoes · 21/01/2009 21:42

Hi can I join in? dd is 13(14 in april) she hasn't got an ilness but has severe cp, and I often feel in nether nether land as not alot of parents of teens arround.

2tartanshoes · 21/01/2009 21:43

cory really pleased that it went well.

preggydonuts · 21/01/2009 21:49

Hi
Just wanted to say that I have severe crohns and coeliac disease and have minimal functioning bowel left BUT have full time teaching job - although I have my own loo - and three lovely kids. It is manageable and I tend to joke about it.
Watch out for eye pain, thats when I know something is coming......

optimisticmumma · 22/01/2009 08:45

That's fantastic, Cory .
Hi 2 tartanshoes am being really thick but what do you mean by cp before I jump to conclusions! Welcome by the way my DD also 14 in April - weird

cory · 22/01/2009 09:17

also vote of thanks to preggydonuts!- it is good to hear from someone who is coping and not letting their illness dictate their lives- because that is our fear for our teenagers, that this will become their lives

Flip

1 2 3 4 5

Swipe left for the next trending thread