Confusion over DD's diagnosis and innacurate hospital report-am I being OTT?

[used2bthin]

I am sleep deprived and 8 weeks post natal and its the summer holidays and DD is hard going so am a bit (lot) nore emotional than normal BUT

EVERY letter from the hospital has a different list of issues for DD. Some say microcephaly and chromosome deletion. Some (neurology)have discounted this as causes so no longer mmention it. Then we have: GDD or SPEECH AND LANGUAGE Difficulties.

Most recently the paed who did her report failed to mention that she has s and l difficulites at all and wrote challenging behaviour instead. Now she does have this but imo as a result of the s and l.

She also has a genetic condition that atm is poorly managed and this impacts on her mood due to hormone levels.

Sorry for the moan I am really upset that we seem to be nowhere in determining even what is wrong wth her and now have another year till the next paed appointment. I have concerns re autism and have never had a staright aswer from anyone on this.

I have phoned the paed and asked to discuss the report, it also has a list of "current support" of ten doctors and other professionals most of whom we have seen once (ie OT ) and I feel it implies we have loads in place when in fact we are struggling with no diagnosis for her learning issues and no consistent advice on how to help her. Am I being overly hysterical over this? I feel like we are doing her a disservice as we are so lost with some of her problems ands school gets very little advice on how to support her.

Sorry, are you 8 weeks post giving birth but talking about another DC you have? I think you are, so I will say the following:

I don't think you are in any way doing your DD a disservice. We all strive for answers. You have sought out advice. I got a lot of conflicting reports from speech and language, the OT, the Paediatrician, the Neurologist, etc. That is fairly normal from what I can ascertain from talking to other parents.

You may unfortunately never get a diagnosis. I know of two/three conditions my DSs have, but no-one can give me an overall name or reason why they are they way they are. I have had to learn to accept that, but it has taken time.

I hope you feel better soon and don't be afraid to question the doctors either. That's what got me as far as I have done in my opinion. Shout loud! I'm a right pest as far as the hospitals are concerned

Best wishes. x

Sorry, I have read my post back and oh dear it doesnt make much sense, bit of a rant!

Yes DD1 is the one I was talking about, am 8 weeks after having DD2! Just having a bad time emotionally I think and hormones aren't helping me or DD1 who has serious mood swings atm due to her meds being out of whack. This is being sorted but involves us going into hospital next week for some traumatic tests and she fits during painful procedures which is worrying me too. Argh!

I guess I am wondering if I have been fobbed off-the paed registrar was yawning during our appointment and it felt like she was just giving us cliches, I know she must work long hours but that was a much waited for appointment iyswim and the report offers nothing, no hope, no help. I am wondering if DD1 has autism and wondering where she is developmentally and had hoped the appointment would be an assessment of sorts as it was before-this time she said assessments were now school responsibility.

Will discuss with the paed when she calls me back, I just feel a bit lost with it all but as I say, could be just the hormones.

I posted on another thread just now to reply to you and the OP.

It's not surprising you are worried and feeling fobbed off. I felt fobbed off for years. My DSs also went through a lot of painful tests which I found very traumatic (MRI's, lumbar punctures, muscle biopsies, blood tests, etc). I KNEW one of my DSs had autism as well as his other problems but his diagnosis was delayed (long story).

I was in the fortunate position of getting my DSs Statemented from the age of 3, even without a 'proper' diagnosis. They have always attended a SN nursery then school.

Perhaps someone else that has had to go through an assessment with a mainstream school could possibly help you more?

All the diagnoses I have received seem like 'bit parts' and it took ates to get each one. I hope you get some help from the paed when she returns your call.

Thanks. DD1 has a genetic disorder so fortunately they already had her DNA so at least there were no extra painful tests for her with the GDD/s and l disorder/learning difficulties that must have been stressful.

Bit parts is exactly how it feels. We are lucky to have great support at school (30 hours) but I torture myself over whether mainstream is ok for her.