How do you deal with the stress? I've got a big decision to make for my dd and its really getting to me.

[used2bthin]

Don't really want to go into too much detail its very complicated but dd needs at least one operation. She is booked to have the first in October. This is already controversial in that our surgeon wants to do it in two stages but the support group leader for dd's condition thinks this is possibly not right. So I've now got a second opinion or will do after the appointment which is being squeezed in so that we can then decide whether to cancel the op or not.

The whole thing is controversial anyway because one op is almost cosmetic but the other/s are essential. Then there is the decision about when to have it all done, some say early some say wait till the child is older.

Sorry so hard to explain but my point is how do I continue with normal stuff and not let this totally take over? I am already under stress with the day to day management of dd's condition although I am used to it now it is still a worry and there are so many unknowns. And then there are these huge decisions to make and if she has surgery sooner rather than later I will know it was my decision and probably feel guilty when she is recovering. It is all just getting me down and I find I can't concentrate on other things very well and find myself talking rubbish as I'm not concentrating!

[used2bthin]

Bump?

[used2bthin]

FioFio thank you and it does help. Just hearing that others have similar worries helps. I am lucky in that there is a fantastic support group for people with or caring for people with dd's condition but all the parents very much promote their own choice for their child. Well promote isn't the right word but I can't get an unbiased opinion from someone with direct experience iyswim. And its sensitive so not something I want friends from toddler group etc knowing about in depth for when dd is older. I keep cheering myself up by eating which doesn't work because then I feel fat but I can't drink (single parent) so its hard to know how to unwind. I also keep wanting to buy dd nice things to make up for the horrible things she has to go through but not really a good long term plan!

[used2bthin]

Thanks Tclanger time out does help, I went out last week and it did help to step away for an evening. I think maybe I sometimes worry about other stuff to get away from the big things if that makes sense. Like I will get really stressed that I am not the same size as pre dd when really that doesn't matter but I'll obsess over it or about some random thing that could happen to dd its probably a coping mechanism. I asked her consultant about counselling as it was mentioned after she was diagnosed but then I was told that was genetic counselling and I felkt a bit silly! I have recently found out that if we cancel the op in Oct then there is a joint clinic we can go to where there are psychologists, endocrine team and surgeons and genetic team to talk to. I wish we'd been offered this before but better late than never.

[slightlycrumpled]

used2bethin You have my sympathy, I posted a thread yesterday about making difficult decisions for our children. My ds is scheduled to have an operation that will help his speech but could have negative consequences on his health, and its all I can think about.

One of the posters on my thread yesterday (thanks Blu) mentioned keeping a diary, something he will be able to look at when he is older. I started it last night and I felt a little better straight away, almost like my own therapy.

On the counselling note a couple of years ago when ds2 was very physically unwell I had some counselling and it was very helpful. I got it through my G.P after I refused anti despressants but felt I needed something.

These are just such terribly hard decisions to make and when I feel the burden of responsibilty the most. With our children we are ruled by our hearts!

I do hope you get some guidance maybe from a family who have gone through the same procedure. I got a lovely email last night from a mumsnetter whose dd had had the same procedure my ds needs, and the information was invaluable.

You are in my thoughts.

[used2bthin]

Thank you everyone I've just come back online. Riven how is your dd doing and have you got a date through yet? My dd's involves her reproductive system so unless she gets an infection could in theory wait till she's older but the first and current surgeon thinks its too traumatic to operate in that area once children are old enough to feel embarassed etc but it looks like the other surgeon may well say something completely different. He has already had her under anaesthetic to look inside and see what needs doing and wanted her to be under one for her MRI aged two weeks so I'm worried he is a bit blase about the risks. I keep worrying that she has undergone tests she didn't need for their research but that is probably paranoia talking!

Slighlycrumpled a diary does sound like a good idea. One of the parents I speak to with a child who has the same thing as DD was saying well whatever we do they may resent it later on you just have to make the decision and hope for the best which is true.

[used2bthin]

And thank you Tclanger you are right about dd just wanting to play with me. She is so cute atm I feel guilty though when she goes through things that others don't have to cope with. I know there are children coping with worse though and their parents. I did try and get counselling at one point but couldn't find anything specially for parents which was what I wanted really. I probably should have done for the guilt thing. I know its part of being a parent but I do wonder if I feel worse because subconciously I blame myself as its a genetic condition.I know rationally that its not my fault but I know the tricks my mind can play so wouldn't be surprised!

[TeacherSaysSo]

used2 I sympathise so completely . I just had some crap news about my dd today at the hospital and have to get my head round her possibly slipping down a slope which has always been threatening, and has an unspeakable ending. It just gnaws at me and creeps into my head if I make any space in there. I understand how you have to fill your head with something, anything else (that's why I'm blathering on at 22:48 instead of going to bed!!!)

There's so many decisions that you have to make for your child, there's so much guilt to take on for making the wrong ones. i had to smile at your genetic remark cos I have spent the last couple of days feeling terrible about the crap genes I have given both my kids. I look at my kids cousins and there are 8 of them, all perfect how can that be?? how did my children get such a raw deal...

How do we stop feeling like this. We must be entitled to scream and rant and yet there is absolutely no oppertunity to. Maybe a diary is a good idea, I would have to keep it very well hidden!!

[used2bthin]

Teachersaysso I'm really sorry to hear that you have had such bad news. How are you feeling or is it still too hard to take in?
I too do taht thing of looking at other peoples children and wondering ho for example someone can have five, all perfectly healthy and yet I have one and she has not only got a genetic condition which I am still learning about but she also seems to have got every other thing wrong with me and her Dad too like acid reflux and psoriasis and excema. I for me it helped that I never really expected life to be fair but it never occured to me that something would be wrong with my child before I had her so did come as a huge shock.I am going on but yes a diary probably would be a good plan. I am usually good at burying my head in the sand though so I'd have to be feeling strong to write it.

[TeacherSaysSo]

HOw old is your child? Mine is 6 and I can't believe I have spent 6 years with all this worry in the background. I can't remember what it was like to just worry about normal stuff.

We are at a stage where we will have to decide on using strong toxic drugs which have horrible side effects and no guarantee they will work at all. the other option is to do nothing and watch her disease progress unstopped on its merry way. I guess there is no choice really but I just want soemone to say ' it'll be ok in the end'. Wouldn't you do anything to see into the future?

am I being to morose?? sorry, am usually more optimistic. Just wanted to say i totally 'get' where you're coming from and its nice to know we're normal!

[used2bthin]

Teachersaysso that sounds truly heartbreaking for you and 6 years is such a long time to live with that worry, life is so unfair sometimes. My dd is 22m. Her condition is something that, while it is potentially life threatening, it is manageable with drugs and extra care/hospital where necessary. It has only been treatable for fifty or so years and I think its fairly recent that people with it have had such good life chances so that gives me hope really, that medicine is improving all the time but I know the uncertainty is scary and must be so hard to deal with being told something like you have been told today.

I hope that makes sense and I think however you feel right now, it is normal because you have had a huge shock. And yes I'd do anything to be able to see into the future I know exactly what you mean. I look at parents I know who seem so relaxed and wonder if they have such morbid frightening thoughts as I do, are they really as relaxed as they seem? Would I have been like that if things had been different? I suppose its impossible to tell but we do what we can and carry on. I hope you have got good support from the hospital? Is there a support group for your dd's condition?

[TeacherSaysSo]

Yes there is a support group but it is US internet based as it is so rare (only 1 other I know of in the uk). It makes it harder to discuss with others as it gets so medical (is respiratory) - do you have a good support group? does it help? my dh thinks it just makes me too aware of the unhappy endings!

(and thanx Chrissie I don't usually dwell like this, but your positive thoughts do really help.)

[used2bthin]

Yes we have a brilliant support group in the UK I am very lucky to have it, its mostly online but I have met other parents through it. My XP thought it was "morbid" that I wanted us to go to a conference run by the group actually, we went and I found it helpful talking to others although I satyed out of certain talks, like the one about adult management(it will all be different when DD is older as treatment is changing so much) and one that was about the one long term study that has been done because I saw the heading "mortality rates". I do find that I sometimes get stressed out reading other peoples problems on the support forum sometimes too so then try to take a break from it. On the whole though it has really helped me. The chair of it is a parent of an adult with the condition and is amazing, we never would have known to question what the surgeon was doing if it wasn't for her and also have found out so much about the condition through it that has made it far less scary (mostly).

I am aware that in a way though it is a luxury for me to be worrying about how my decisions will affect her in the future. Its taken me till now to stop panicking enough to imagine that future. Your dd's condition is very rare then have you met the other family in the UK?

[TeacherSaysSo]

I can't imagine what us mums of sick kids would have done without the internet?? It is so-o-o helpful. But why don't the dads need it? there's only about 2 men on ours.

Isn't it weird how we still see how 'lucky' we are though. Like you feel you're at least pleased to see a future for your daughter, and I have to remind myself its not all doom and gloom as dd is living a lovely 'normal' life at the moment and there are so many children that are really incapacitated by their conditions.

Note to self: must focus on positives! and maybe the medical world will get there just as we need them!!

One of the mums on our site has a child that is 18. She said she is relieved that he has finally reached an age where he has responsibiity for his own condition,but now spends her time worrying he is not looking after himself properly!

[used2bthin]

Yes the internet is quite literally a life saver for some as it gives so much access to information we wouldn't otherwise get. Of course this can be good or bad and I have learned the hard way to be selective about the sites I visit. The medical world is changing all the time so things get out of date quickly I find.

I can understand about that mum who is worried now her son is taking over his own care, it is something that terrifies me for my dd as I know how much of a risk taker I was as a teen and my dd wouldn't last long if she behaved the same way. Then I just tell myself she will be more sensible because she will have to be. I suppose the worry doesn't ever completely go it just changes to worrying about different things. Its hard isn't it?!

[Blu]

a thread here with discussion about difficult decision-making which may have some relevant ideas

Good luck, U2BT - I feel for you.

[used2bthin]

Thank you Blu, I have spoken with the OP from that thread and it was very relevant. I'm feeling calmer about it all for now which I think is partly because I spoke with people on here and just aired my worries and partly because we now have the appointment for the second opinion so until then I can't do anything, can't cancel her op as I don't know whether this other surgeon will just say go ahead with it but also can't stress too much about the op because I know it may end up cancelled. So relief of sorts. Hope your DS is doing well btw Blu, he sounds very mature I hope my DD is able to deal so well with everything when she is older.

[Blu]

It's good that you have a second opinion appointment - I hope that clarifies things for you...sorry - I was rushing when I saw and responded to this thread, and missed that SlightlyCrumpled had already posted on yours!

[used2bthin]

Thats ok it was a very relevant thread so thank you for telling me about it. Yes I'm hoping I'll feel better once we've met the other surgeon. I think we've had a bit of a hard time by being givem the other one but will know more when I've seen her. Wish it wasn't such a long wait though as I can't not worry about the op till I know we are definately not doing it.

[Blu]

Are you worrying about the actual process of the op (child in hospital, GA etc) as well as what the op will do?
DS, 6, having his 6th general anaesthetic tomorrow - so I can blather on about how to get through that experiecne til the cows come home, if it would help!
But am off to bed now....

It sounds as if you are in a tricky and quite unusual situation,regards consultant opinions and possibly politics - so a new outside view will hopefully be v illuminating.