I don't like the letters that come after consultations is it just me or

[MadLyCarrolingChristmasMouse]

they just seem so much to focus on the negative, where the consultations always look on the positives.

saw community paediatrician for the first time (so far only seen neonatal consultant). She is a youngish registrar standing in for consultant.

We talked about ds, his cp, how his physio and ot feel it is mainly hemiplegic. suddenly in the letter it says under diagnosis all four limbs, and she has sneaked in developmental delay as a diagnosis too. wtf that is news to me.

yes, a the meeting she explained that if a baby cannot use both hands he will be a bit behind in learning, is that what she means?

she writes 'I was pleased to hear that his development is coming although he is a bit behind'. what does that mean a bit behind? We thoughthe was just behind in motor skills, now I am fretting again.

sorry, I know many of you have much bigger fish to fry, after all he is 10 months and yesteerday pulled himself to standing with one hand from the netting in soft play. He will get there. But these letters make me worry.

sorry, calm rational and scientific dh just pointed out that delay in motor skills is developmental delay and that is does not say global developmental delay. and to stop flapping

those of you with better things to do (that will be all of you then ) please ignore

actually i rather feel the very same way with the 'to sum up' letters, usually sent as an afterthought i notice - a copy of something they send to the GP!

It always seems that they sit and smile at you while you are there and then you read the letter and it says stuff that either was never mentioned or stuff that contradicts what you say, or even worse makes you out to be a hypochondriac/liar!

I agree mouse, i hate them too!

I used to break down in tears at every letter when ds was 10 months old. They always began 'neonatal ischaemic encephalopathy, spastic cerebral palsy quadriplegia....and finished ten lines later with 'abnormal curvature of spine at C3'.

14 years on, he's just in from school, already on the Wii Mario Karts (with his one good hand), been to the fridge (on his funny old legs) and drunk nearly a pint of milk, helped himself to 3 bars of chocolate, says he did a mean Jailhouse Rock at the end of term karaoke session, and hidden away the Xmas presents he bought for us at the school Bazaar (and they probably are very bizarre).

Keep on looking at your lovely ds right there in front of you (and he's pulling himself up, that's great) and look less at the letters.

Oh yes. It always gets to me when we chat at the appointment openly, in plain and simple English - then we get letters written in Doctors-speak. Have asked NMC to translate neuro letters previously, only to find the letter says pretty much what we talked about. Grrrr!
I think they have to focus on the 'negatives' as even tho they are negative to us, they are points of interest for other doctors/specialists and also reference points for the future. He may be a bit behind now, but that'll help them see he's less behind next time IYKWIM.
BTW - I think anybody with a brain injury gets stuck with a Dev Delay diagnosis/prognosis. Gabe got tagged with it at 6 weeks old - he had spent 3 weeks of that unconscious and close to death, so it wasn't really a surprise . PS sent you a message

Madly, I don't think the formal letters ever provide us (me anyway) with reassurance, and that's all I want or need sometimes. He's pulling himself up, though, I expect he deserves a few guzzles for that!

Nutty your post is very heart warming! I wonder what he has bought you for chrimbo!!

I had a doctor make me cry once when I was at hospital. Had an eye check, he talks to my mum in latin doctor speak that she understood and I didn't, and he made it sound like things were getting worse. Cue me sobbing and going "Mum I don't want my eyes to get worse!" Turns out things were OK.

Embarassingly, I was 14 at the time! I've been discharged from hospital now but still get a yearly check and still need support in some areas It's made me teary just thinking about it (because my sight's starting to level off so I'm coping with the fact I probably won't learn to drive )

I dread to think what he's bought me for Xmas, but he has bought his uncle a tin of dog food (don't ask).
Over the years I have often wished that once DS's initial acute illnesses had been addressed (he too was kept unconscious for 3 weeks) we had been told to go away for six months and just get to know our new (first) baby. Of course, I realise that the physio he had in his first months did help with his arms but intrusive things like EEGs producing 'inconclusive but possible epileptogenic foci' results were damn scary. And still resulted in a 'wait and see' approach.

I get like this too and cn understand you being upset by it. Sometimes they seem to beef out what we spoke about as if they have to prove we talked about what we were meant to. I get this with the surgeon mainly, he wrote something that I just did not say and sent a letter to me and the GP stating it. Its something I would not want DD to read when she is older so I need to get it taken off if that is possible. We have since had a second opinion from a different surgeon.

One thing that I still remember from DS1's diagnosis letter was that it started 'DS1 is a lovely young lad of seven who...' before launching into all the things that were wrong.

I totally agree. I used to come away from appointments feeling, I wouldn't go so far as happy, but OK about things, then a few weeks later the dreaded letter would pop through the post, I'd then be in tears and said letter would be crumpled up and thrown at the wall (only to be ironed out later and put in DS's file!) One letter started 'I'm sure he is a happy smiley boy at the moment but we expect..' queue a long list of difficulties we have to look forward to in the future DS was 10 months at the time!

DS 3.2 has CP and IS globally delayed but looking back at these letters I can already see how much he has exceeded certain expectations. Now when I open letters I think 'come on do you worst' - the bad ones usually get a raspberry blown at them
ps well done to your DS on pulling to stand!