poorly daughter

[snowcrystal]

My daughter was ill with what became a life threatening illness 6 months ago now a long term illness .Problem now is she wants her freedom which is fine but the experience hs upset her whole life ,she has made new friends after her best friend was mean to her when she came out of hospital,she is angry and shouting at us all the time,has suddenly started smoking,I feel Ive let her down but at the same time feel I dideverything I could for her.Am worried about her emotional state.

It can be so hard for anyone to be severly ill. Each person will react in a different way, some will savour every day, others will have problems coping with what is happening to them. It sounds like your daughter is having problems. It sounds like she doesn't understand, she's not come to terms with what's happened and her behaviour is showing you this. Her life has changed so much, not only has she been so despiratly ill, she's lost her friend. I'm not surprised she's so angry. It's traumatic for anyone, let alone a child.

Is there someone you can talk to from the team that is looking after her long term? Maybe your GP can refer her for some therapy so that she can work through what has happened to her.

Don't blame yourself. There is no reason for illnesses, they have no boundaries of age or class. They affect anyone they can, regardless of the amount of love they recieve from a parent so you really must not blame yourself. What's important is that she recieves the emotional support she needs to resolve the conflicts she is feeling. Hospitals are very good at caring for the body, not too good at caring for the soul and the emotions though. Just support her through this, get some counselling for her aswell. It will be good for her to let it out.

Tanks POTCCA.At first I stayed with her all the time in hospital and we were very close.The summer term I took her in for part time schooling and we had lots of appts to go to and health difficulties.The school was good and she excelled in her exams despite everything earning endless accolades from her teachers.but as her illness is more under control the psychological problems have surfaced and our relationship is tense .Maybe I find this more difficult and I feel she is judging me.If I show concern she wants me to back off but also seems to feel I am not helping her in the right way.Its also about control and maybe about trauma I don't know.She has been on high dose steroids as well as being very ill.

It's so frightening for a child, they don't have the ability to think things through as an adult is able to. People often reflect after an illness, what did they do? Will they get sick again? It can be really hard for a child to work through this so some either withdraw or rebel. I don't think she is judging you, she's unsure what her future holds. The illness has taken away some of her childhood innocence as she has learned how precious life really is. She does need professional support for this. Show her that you are there if she wants to talk. Have a pamper day, a facial, nailpolish and sit and talk. Just tell her that you care and you are there to listen and support her.

Snowcrystal - sorry to hear about your daughter and also abnout your situation.
You don't say what the illness was but perhaps see if her consultant or GP know of a counselling person who helps kids her age or linked to a charity related to the illness she has. There may also be an opportunity there for you to have some help too as doctors do understand that when our children are sick, it takes its toll on us parents also. The other thing is that if she is on steroids (is it Dex?), then this can also affect mood and so this may not be helping her or you either.

Just as an example, my son has cancer and as such, both my husband and I, as well as our son (if we felt he needed it), have access to a psychotherapist linked to Clic Sargent (children's cancer charity) at the Bristol Children's Hospital. Initially being asked if we'd like to talk to a psychotherapist was a bit like them tarring us with some mad brush, but actually, whilst my husband doesn't go to see her, I see her every week and it really helps give me coping strategies for when our son is very angry and violent.

Plus ask the doctors whethere there's anything alongside the steroids which could help with her anger.

Perhaps look into homeopathy, or something like acupuncture - I've not tried these but perhaps someone else knows of whether these could help - either your daughter or yourself?

Hope you're both okay. Sounds a bit trite just saying that but truly hope all is alright for both of you.

She probablywill get sick again as it is relapsing and remitting.Maybe it is the realisation it is a long term illness that has hit her after her initial huge effort to get back to normal.I SUPPOSE i'M WONDERING WHY SHE is cross with me now and why when she's been so good about it all it should go wrong now.Another bad thing is she was a really talented ballet dancer and her muscles still haven't come back yet and she feels hertechnique has gone.I understand all this but the problem is I want to help her and make it better but she doesn't want any fuss so it has become awkward and even cross.I feel really sorry for her and she is very tearful.sorry so long

Snowcrystal - do you know of any charities will speciaise in helping people with your daughter's illness? They may be able to provide you with some advice on how to feel like you're heling your daughter at such an awful time for you both.

Plus as her Mum, you feel it's you job and purpose on this earth to look after her and protect your daughter. The thing is, when our childre get so sick, we feel so helpless and it's only made worse when they don't want our help or even turn against us.

One technique my counsellor gave me for our son (who is 3 but still gets very angry with me and bites and kicks and hates the doctors and nurses..well most of them), but she taught me to say to our DS that it's okay to be angry, scared and upset. It is perfectly normal for your daughter to feel angry and so normal that she should be angry with you as she loves you the most, and so feels secure to be harsh with you. It hurts the most when our children are angry with us but with some help and someone to talk to, you may be able to 'live with it', as her mum.

Gosh, that all sounds so rubbish in terms of what you're going through, but do speak with her docs and see if there's anyone you personally can chat with about how your daughter is feeling, and thus how it's affecting you.

Remembering when I was her age, I think I would be the same. I'd rebel against my mum at the smallest things but even more so when I was scared and angry. I'd imagine your daughter is really scared and quite peeved that she's not a normal kid anymore. And on your side of things, you're peeved because all you want to do is protect her. I also think that mainly, mums do worry much more about their children, than dads do - in general anyway.

I've found some webpages which may help you, but definitely speak with your GP or her gastro specialists about support and groups where you are. Sometimes you may find groups with email support where your cry for help is anonymous, if you wish it to be.

www.nacc.org.uk/content/groups.asp

And this is from the NACC website also - yu can call and talk to other parents who know exactly how you feel;

New Parent to Parent Service

Parent Volunteers, parents with children who have Colitis or Crohn?s Disease, have been trained to talk with other parents in a similar situation. A telephone appointment can be made through the Information Service 0845 130 2233 to talk to a Parent Volunteer. Any parent with a child who is still at school or still under paediatric care can use this service.

You're right - it's very different with us as our DS is only 3 but I'd imagine my feelings of helplessness and being out of control do match how you feel. My heart goes out to you and other parents who find themslves in these awful situations. We're meant to be here to care for and look after our children and so when something awful happens to their health, we somehow feel helpless and as though it's because something we did or didn't to.

I wish you well and hope you're able to get the help and advice you need.

Thanks hsanders you're very kind and helpful.I will try naccs parent to parent service next week if I still have worries.We are served by a specialist on an outreach basis instead of the whole multidisciplinary team we had which was then too far to travel to but I could maybe ask to see them again.
I need to adapt from hands on nursing mentality parenting to hands off caring but still dealing with the teenage issues as i usually wouldparenting.
Thank you and I hope your DS is doing well.

You're welcome snowcrystal and hope all is okay with you and your DD. Reach out to whoever you feel comfortable and make sure you take all the help you can; I didn't for ages and practically went mad wondering why I was going mad, and then as soon as I was able to speak to someone who knew exactly how I felt, I then realised I wasn't mad and all the feelings I was having were perfectly normal ad also different to being a 'normal' parent. We'll never be normal again!
Good luck.
H x