Sad...

[Caroline5]

Some of you may have read my posts about our dd, Anna. She is nearly 17 months old, but is not yet crawling, walking, pulling up and is saying only one or two words. She has a very small head, which she had before birth and which is still off the bottom of the centile chart. She had a development review by the health visitor which placed her some months below where she should be for her age

On Tuesday, we saw the consultant paediatrician locally here again. To our great sadness, he told us that our dd was basically in some way brain-damaged because her head has not grown properly.

We may never find out an exact cause, although they are going to do lots of tests (genetic tests, brain scan, EEG, blood tests). Our dd will receive therapy through a system called Portage, to try to help her to learn to move, speak etc. Does anyone have experience of this?

While we knew something was not right with her, we still clung to hope that she was just developing more slowly than average. Dh and I are both very tearful right now, almost going through a grieving process for what might have been. I don't feel angry, just very, very sad. It is hard not to question whether I did something wrong, did I not feed her enough or eat the wrong thing during pregnancy? We just love her so much.

It is hard not knowing what the future holds - how disabled will she be, what will life be like for her?

Sorry if this is very depressing, but it just helps a bit to write it down. Thanks for listening.

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Hmm, Caroline, if he is anything like one of my GPs he is just rubbish at dealing with "embarrassing" situations - maybe so wound up with his own feelings about saying the wrong thing that he can barely open his mouth. You'd like to think GPs and health visitors are trained to manage consultations with people dealing with very traumatic situations, but the training doesn't always seem to stick. Is it a group practice - and if so, could you try and find a different doctor within it? I coped with a horrendous early encounter with one GP by making a different, much kinder one my "designated" doctor for anything to do with losing my baby. It means I have to interrogate the receptionists as to when she is on, and I sometimes have to wait a few days, but for follow-up stuff I prefer to do that.
So sorry you have encountered this entirely unnecessary sort of attitude, but v. glad to hear that at least your worries over the lump in your neck have been addressed. Keep us all posted on how the portage goes.

I'm stunned, caroline5. I've harboured the idea that they are fine and supportive when something like this happens (well they do sack-all for everyday problems, so I was hoping ......).
I'm seething actually, on your behalf. It's disgusting. You ought to complain. It doesn't take a second to say a sympathetic word, there is really no excuse for this treatment.
I'm flabberghasted and can't think of anything more constructive to say. I am also very sorry to hear about your child's condition and send all my best wishes to you.

Sorry

Caroline5, sorry you had such unsympathetic treatment. Just a thought, some doctors expect you to make 2 separate appointments for mothers and children. I'm not saying this is right, not at all, but just wondered if time pressure made him short with you since the appt was for you? But I am being generous here! He should have been nicer. Do think some doctors have a terrible bedside manner. Agree with Marina, could you see if there is a doctor in the practice who is more sympathetic and try to see them next time? Hope things get better for you soon.

Caroline I have to say it sounds very familiar to me before I moved. My doctor's surgery knew me v well having 3 other children, but not a mention of my son and his cp, even when I was at an appointment for him and said to gp about the diagnosis. Didn't even seem like he was listening. It left me feeling very upset and really shook me , because up until then I had thought of this doctor as a good man, and quite caring. We've moved 80 miles now and the service couldn't be better thankfully, but I agree with the others that you need to find another doctor that will make you and you feelings not feel so irrelevent. Good luck. Glad you've got portage under way btw.

I agree that doctors can be really unsympathetic and just don't know what to say in 'awkward' situations, I think I've heard somewhere that they only get one lecture in all their medical training about 'communication skills' (considering how many courses on this my DH as a Sales professional has to go on it is ridiculous!!). MY GP was also hopelessly embrarrassed when he visited me at home shortly after I had had my DS who was born with a skull abnormality & needed major surgery.

Caroline, I'd raise this with someone - a practice manager eg - because people will never improve at what they do unless they realise that people are upset at being treated like that.

Yes www, agree that it could be to do with needing to make two appointments. However, I've almost never gone over my 10 minute slot anyway. Have really had enough of this doctor's offhand manner (other mums have also been critical of him) so will see another one in future. I do think he means well, but seems always so stressed and rushed that he just doesn't have time for you.

Have to say that so far the treatment from the more specialised doctors/nurses has been great. Thanks again everyone.

Caroline and lou, nothing helpful to add, so sending you both a hug

Caroline 5
maybe he was having a difficult day
just given someone a terminal diagnosis, termination counselling,
or he had been assualted by a patient
or any of the other terrible things GPs have to deal with every day

Ouch, Marysmum. Point taken.

Caroline... I was so sorry to read about Anna's diagnosis, you just have to remember that she is very lucky to have you has her mother as you will get the very best treatment and help for her.

It is not your fault, and I say that with feeling as I went through all the same emotions as my 2 yr old has cp. There are tough times but when they manage to do anything for themselves, however tiny, it is so satisfying for all concerned, as I'm sure Lou will agree.

I don't know if Anna actually has cp, but in my case I've found the 'talk,talk' pages on the Scope website immensely helpful. Was Anna premature? Take care, anytime you need achat - just post.

Marysmum, that was a bit of an uncalled for post, I think. Caroline's clearly said that he's got a consistently offhand manner. I think she's absolutely right to expect a bit better what with one thing and another right now.

I wonder what his bedside manner is like with terminal diagnoses ot termination advice if he can't show a modicum of interest, sympathy and warmth to a mother who's just found out that her baby is disabled?

Are you a disillusioned GP or something?

Marysmum- I think maybe my last post was too harsh, especially if you are a GP and going through a rough time. Sorry.

Still think your GP should buck up his ideas a bit though, Caroline

I think your post was very well written actually Scummy

Thanks, Scummy and MABS. I think we'd better give my doctor a break now, though!

PS Scummy, got the information you requested for me - haven't read it all yet, but it looks good. Thanks.

Just a quick update! DD had her first physio appointment today and it was really encouraging. The physiotherapist thought that eventually dd should be able to learn to walk - she couldn't see a physical reason why not. Dd has quite floppy leg muscles at the mo, like a young baby really, and she is basically afraid to move off from sitting. I feel much more positive now that we have some concrete exercises to do with her, and she actually seemed to enjoy some of them !

Glad to hear you had some positive news Caroline5. I'm glad your dd enjoys it too, it makes the session so much easier! Keep us posted on how she does please.

Ditto. Best wishes, caroline.

great news, caroline.

That's good to hear, Caroline!

Sorry if this is a bit self-indulgent, but am feeling pretty down again about everything. Getting used to having a disabled child is a very up and down process. Dd seems to becoming more "vacant" generally and also more grumpy (much more crying than in the past), although I suppose this could be teeth. It seems to be getting more difficult to connect with her.

Went to a special toddler group for special needs children this week. It was excellent, loads of activities, brilliant garden with maze, wind-chimes, sand-pit etc but was quite upset to find that dd was really the most behind of all the children there. This wasn't what I'd been expecting, and am having to accept that she is maybe more disabled than I had realised. Did meet some lovely other Mums and hope this will be a good support.

BTW, for any other Mums with special needs children, who have you found the most supportive -family, long-term friends, friends you make through your child's disability, doctors etc, neighbours, Mumsnetters ....?

Oh Caroline my heart goes out to you, we are going through the same process as you, we have good days and bad days. There are times when I don't want to take my son anywhere where there will be anyone other than us, because it always highlights just how behind he is, and however hard we try not to, it's impossible not to compare sometimes isn't it?

If I am brutally honest my family have been decidedly unsupportive, to the point of ignoring anything we say about our son and his prognosis,or juat saying unhelpful things like well he is what he is, nothing you can do about it. They don't seem to realise that we need time to grieve, and work things through. My friends, with the exception of two(one posts on here as spacemonkey) have been the same. Lets just not talk about it kind of reaction, and it has really taken me aback, and made me rethink my feelings towards some of them. My new health visitor is amazing though, she keeps phoning just to remind me that she is there to support me as much as my son. Health professionals where we have now lived since september have been wonderful, and mumsnet have been a great comfort to me, especially when i just needed to say how awful I felt, because noone made me feel ridiculous.

I haven't been to any special m and t groups as of yet. I don't feel ready, but practically it's virtually impossible at the moment with all his appointments. By the time we are done we have to pick up the others from school etc etc or we are just plain shattered.

Obviously I hate for you to be feeling like this, but it makes me feel better in a way knowing there is someone else feeling the same emotions. Keep posting if thats what you need , I'll be here and so will everyone else I am sure .

Caroleine5- just picked up on this thread. The most supportive friends are definitely the ones going through it as well (I have a son with autism). You can moan to them and they understand. They also understand how important the positive steps are. Friends with normally developing children just don't tend to understand why it's so exciting when your 3 and a half year old has just carried his lunchbox to the car all by himself and with only a verbal instruction. Special-needs parents understand exactly why you're beaming form ear to ear, and really share in your excitement. So keep going to those support groups- and look online for some as well- I've made 2 really good friends through online groups- I actually live just round the corner from one of those now and we meet and phone and moan all the time. I'd go insane without those friends.

Hope you're finding portage helpful. We have portage- his workers pretty good. You could also ask at support groups for advice on nurseries. DS is at a fantastic mainstream nursery recommended by a friend with an autistic daughter.