Seeing the doctor today - I think I have Post-traumatic stress disorder since dd's diagnosis

[Jenkeywoo]

I know this will sounds ridiculous to many of you here as you all seem to cope so well every day but I am not coping - I feel sad. Lasy year my lovely little girl was diagnosed with mild hemiplegia (CP affecting right side of body) - we were told it was so mild it could hardly be diagnosed and that without any intervention she would reach all of her goals just perhaps a little later. Well, she wasn't reaching those goals at all (partly due to crap physio but that's another story) - at the end of last year I asked for an MRI to find out more and last month we got the results and her diagnosis was changed to spastic diplegia with arm involvment. Basically all 4 limbs are now affected to a greater or lesser degree. They think she will eventually walk but not anytime soon. And when she does walk it will be much more affected for the rest of her life. They have now suddenly also ordered AFO's for her which is good but makes me mad that for months I could not even get them to agree to refer us to the orthotic department. I think I feel crap as it's her 2nd birthday next week and in my mind I always saw her walking at her 2nd birthday - now it may not even be her 3rd. It also brings back some painful memories of her traumatic birth. I hate it when you close your eyes and think about what could have been but isn't. I know it sounds silly and we should be grateful as really she is much more mildly affected than other children but it all just hurts so much. I just want to wake up and she's walking and can do everything that she wants to. I just can't get over the shock of it and it's making me miserable. I have no idea what the doctor will say but I need some help.

If you think you are going to have trouble explaining everything to your doctor, why dont you print off what you have just typed and show it to them?? hugs and kisses for you xxx

oh lovey this isn't post-traumatic stress disorder this is grief

it's loss of dreams - my mum was a bereavement counsellor and she says that finding out your child is sn is just like a grieving process - you are dealing with the loss of dreams you had for a 'normal' child - one that walked at the right time and did everything in the way it was supposed to happen

the first couple of stages are denial and anger - it sounds like you are very cross and hurt so perhaps you are there. Later comes bargaining, and then depression, and then acceptance

it's a long road and it's not easy, but you do get there, you will get through this and your dd will make you proud

promise

I have a 7 year old who will never walk without sticks or aids of some sort, and she makes me proud every day

Oh jenk {{{hugs}}}

I agree with Cap that its grief and completely normal. I think any parent of a child with SN experiences these feelings to some degree. Its only natural that you think about what could have been. It doens't mean you love her any less.

Jenkeywoo it's not silly at all, it's totally understandable.

As Cappucino says you are grieving, and sadness and depression is largely inevitable.

I got very depressed when DD2 turned 1 - I think birthdays are always difficult. I went to my GP who was lovely and said it was OK to be depressed as I had reactive depression in response to a significant life-altering event, not dissimilar to a bereavement. He gave me anti-depressants (which I was very reluctant to take but actually helped enormously) and organised counselling.

Do see your GP, write a note if you think you will cry (I did) and be kind to yourself.

Go on, who do you think is coping well? seriosuly- I would hazard a guess we all think everyone else is doing better than us at the coping game, I know people think I cope well but I spend as much time as anyone sitting on the stairs crying and I'd rate myself really low on that front in all honesty. Please don't measure yourself against other people, especially those you have never met.

Also agree that its a grief response, capp is bang on with that. have a look at the stgaes of bereavement and you will very likely find a pattern emerging. Having been through the ASD system twice now I can see that very definitekly indeed. The key part of advice they give to bereacved people though is that its not a smooth jorney- you shuttle in and out of different phases and thats very true with SN grief as well- acceptance one day, then huge loss the next. It does ease though- but it takes time. And counselling- seeing your GP is an ex cellent idea I think.

Good luck X

Ditto what everyone else said -it is grieving and it is right and proper in a way that that happens because once you've gone through it (and it was yuck) then it leads to acceptance. I did find antidepressants and counselling helped and I only used them for a short time.

I've always found birthdays hard until fairly recently and I think this is natural too because in children people do measure 'progress' in terms of age however much you know it is daft to do so (I'm not sure that makes sense).

Do go to the quack and get some support. Don't beat yourself up about it.

Best wishes.

Ah Jenkey

have to agree with everyone else. It is grief.
The fact that other people have more or less to deal with isn't the point. This is your child and it is hard to deal with. Don't minimize how you feel or think that what you are feeling is strange or bad.
For years I would dream that DS2 was talking to me and just a regular kid and when I woke up it was so painful all over again.
But you have a lovely little girl and you will be able to deal with this.

I think we talk about 'coping' as if it is the same as 'unmoved' or 'fine about' . And we think it is a feelingthat just one day washes over us - we wake up and we are at one with the world and cope with it. It is mixed up with the stupid notion, oft spouted in books and on tv that caring for a child with difficulties makes us special. As if one day we get a diagnosis and turn into some self sacrificing, jolly mother earth who relishes meeting the needs of our 'special' child.
Bollocks.
We love our children and we get up everyday and do our best and gradually the good bits seem brighter and the hard bits seem easier to manage.

You are doing just fine.
Go to the Doctor. Talk about how you feel to anyone that you think will understand. Oh - and post here whenever you need to.

Thank you everyone - kind words and it's good to know that so many have felt the same way as me. I saw the doctor and he was really lovely - has given me some anti-depressants and reckons they will give me the kick-start I need to get back on top of things. I think once I'm over the hurdle of next week (dd getting her AFOs fitted tuesday, her birthday is Wednesday and Sunday is her party) I'm hoping I'll be able to turn a corner. I know I'm going to find it really hard on Sunday as some of my friends have children the same age or younger who are of course miles ahead of her. But dd doesn't have a problem with them and doesn't know any different so I cannot deny her a party with her little friends.

Pagwatch I think you've summed it up perfectly - I don't feel like all that 'special children chosen for special parents' stuff - I'm still just me who sometimes resorts to giving my children a packet of quavers and a dose of Cbeebies so I can have 5 mins on mumsnet! I try but I'm far from being a jolly earth mother

Ditto what everyone else has said. This is a normal, rational response to the shit the world has flung at your DD. None of us are Mother Theresa. And fwiw I'm sure Mother Theresa would have gone through the same thing in the same situation. (Bit diff for a nun, but ykwim!)

And fwiw I don't think there's any sense in which your response is or should be "proportional" to the hand you are dealt: I know when DD1 was first diagnosed (at that point they only knew about her minor condition) I was gutted and heartbroken that I probably wouldn't see her go to university etc. The creeping realisation that she also has a second far more serious condition and will never laugh or play or communicate hit me less hard, oddly.

Jenkey
Gald the Doctor was nice. Hope the party goes well. Seeing our kids around their more able peers is always hard but she will be having a great time.

Ahh quavers and cbeebies = peace and bliss

Oh that's good news Jenkey! I'm glad your GP was proactive. I found anti-depressants very useful, took them for 6 months and they just helped me over the darkest patch, made me feel like I could cope with the day. I still needed to talk it over with the counsellor but the tablets really helped.

I hope your DD has a wonderful birthday and a lovely party

Jenky

I went a few months ago to my Doctor as I was still not coping well with everything that we have gone (and still going) through

I couldnt have told her everything out loud so I wrote it all out on a piece of paper

she thought it was a fab idea and was really helpful

have been on AD's for about 8 weeks now and feel much better

Im also having counselling, maybe that woudl help?

Can you just ask for counselling then? Lik Jenkeywoo, my DS just turned 3 last week it's becoming increasingly obvious that walking independently may never happen and 'upper limb involvement' is mentioned more and more - I'm grasping at straws when I keep talking to everyone about 'no learning disabilities' as I'm aware that his attention and ability to focus needs a lot of work. It all seems a bit overwhelming and I keep telling myself he's mild/moderate, so many others have it worse and they cope so I should be able to as well. sorry to ramble - it's hit a nerve!

Hairy Maclary (great name btw, we're currently having Hairy Maclary and Zachary Quack read on a nightly basis!) - I think you are well within your rights to ask for counselling - it just depends how long you are willing to wait - after my miscarriages I was referred for NHS counselling and it was 4 or 5 months before I was seen. The GP today did offer me 'talking therapy' but I didn't take him up on the offer as there is a local charity called 'coping with chaos' and they offer counselling to parents of children with SN for £1 a session or something. I've been meaning to get in touch with the charity for ages but haven't had the impetus so I'm going to try and do that now.

Hairy Maclary, Has your son also got CP? When I talked to the Scope helpline they said that it is impossible to diagnose accurately until at least 3+. My dd appears to be quite bright but again they have said that they can't tell what to expect in terms of learning disabilities. Also won't commit to when she'll walk - 'it could be next month or could be years away'. I also don't get really get how diplegia which is meant to affect legs has left her with a a right arm which barely functions. I wouldn't be at all surprised if the diagnosis doesn't alter again as she gets older.

I have found with my two DDs that it's when the goal posts move that I find it hardest to cope mentally. The powerlessness of certain situations drives me bananas and I think that my brain takes a while to adjust to the new realities of life!

I have had counselling recently and it helped a great deal. It can be great to talk to someone outside your circle of friends or family.

I hope your appointment went well, Jenkeywoo.

Shit - just read the leaflet in the anti-depressants box - he's given me SEROXAT - the leaflet scared the pants off of me and having now read the threads here there is no way I can risk taking it. I know it works for some people but I have two young children ffs - can't risk all those scary side effects and the awful withdrawal symptoms. I'm going to have to phone up the GP and talk to him - the thing is he gave it me as I'm breastfeeding so maybe I won't have any choice in the matter.

Oh dear hope you get it sorted and just wanted to add that i felt and still feel cheated at every 'milestone' or not, iykwim. You're not alone in feeling that way so don't be too hard on yourself!

Hi there,

Sory to be late in to this.

Seroxat or Prozac to give it's other name is a SSRI about which there has been a bit of a storm of late.

Thing is, when it first came out it was being touted as a totally safe drug with data saying some people experienced problems taking it being downplayed.

Things have now swung the other way with the other side of the coin being heavily touted largely by the media.

No one should be telling you what to do one way or the other, your GP should be helping you there, BUT, taken for short periods, whilst being mindful and alert to side effects experienced by SOME people, you should be OK.

The problems are more usually associated with prolonged use. It is not a drug you should be taking for years.

Crucially you should also be refered on for more specialist support, a counsellor or bereavment therapist might be a help to you in your situation.

Trouble is such support is at best patchy and depends a lot on your local health board.

there are other ssris suitable for bfing - I would ask for sertraline or prozac instead.

Seroxat is NOT the same as Prozac - same group of drugs admittedly. I do agree with Talies that counselling and/or talking to parents who have been through similar to you would be helpful too.

Hi Jenkeywoo - just got back to this thread. yes my son does have a firm dx of CP, however we have known from birth as he was very prem and had a bleed that was picked up at 5 days old. It wasn't confirmed though until after his MRI at a year. Similarly my son appears to have no particular learning difficulties as in he can count, knows quite a few letters etc and has good language, but there is a delay in processing stuff and a 'low arousal level' which means that his attention wanders and he needs quite a lot of support to bring it back (put simplisticly!). It's now very obvious that he will need support in school for more than his physical difficulties, which upsets me somewhat, although it shouldn't!
As for walking - I always thought it would happen by the time he was two as well, his third birthday came and went a couple of weeks ago and while he had made progress he's a long way off independent walking - no-one will mention the possibility that he may, I'm just refusing to admit that he may not!
It is possible to have triplegia and that maybe more appropriate for your daughter. DS has some 'patterning' in his arms but that is moslty from the lack of tone in his trunk.
I ave been on the scope forum but it's a bit quiet but haven't rung them, were they any good?
Hope you get the situation with your meds sorted soon.

Seroxat is not Prozac - it is paroxetine. Prozac is fluoxetine.

It shouldn't be given to under-18s but many people take Seroxat with no side effects, and good results.

Seroxat is preferable to Prozac when breastfeeding, as Prozac is present in higher quantities in breastmilk.

Most minor side effects such as dizziness pass in a few days. It can take 2-4 weeks to feel the benefits of anti-depressants.

Don't take Seroxat, it's an awful drug to get off, I know

My friend, actually two friends took Prozac whilst breastfeeding with no problems and came of it easily.