harrysmummy

just a little update on harry, we have seen his OT SALT and PT. the OT gave us a senosry profile questionaire to fill out, of which my answers were almost always, which cant be good! well anyway i am getting no joy in getting her to score it! i did it and filled it out 3 weeks ago and shes still not even looked at it i'm getting very frustrated as i dont feel anyones listening to me......... we also went to see a genetist and she seems to think there is a genetic reason for harrys other structura 'problems' so hes due to have bloods, brain eeg and spinal xray....she also observed him for 2 hours and asked us general questions about him at home etc and behavioural and then she said in her opinion harry is on the spectrum! what do i do?? i dont feel like the OT is truly litening to my concerns...now i realise harry is only 19 months but surely if the genetist can see then so can she?? the whole child development team seem to be fobbing me off!! any advice please???

What PECS? He had a better night last night but he was just exhausted from the previous nights! He seems very whiny and unsettled I think you're right that the lack of speech is frustrating him, I sit there for hours saying things for him to repeat but he won't it's just something like dududududududu or bababababababbababa, he also won't drink juice or water he never has purely just milk. Roll on the 1st when hopefully I may get some answers! I'd rather no what is potentially happening than wonder fr the next few years if that makes sense x

Wow thanks for the reply sally :-) it helps so much to be able to hear peoples experiences and views, the last two nights it's been more or less impossible to settle Harry to sleep! Up until 2 nights ago he would have his bottle of milk and fall asleep at 7pm but it's like he can't switch off?!? He just screamed and screamed and screamed, he don't want me cuddling him or comforting him he just say and screamed? What would be the reason for it? X

Thankyou :-) yea he was due to be having all this anyway but after a call with his doctor today I have found out that the doctor who's doing a home visit on the 1st to assess him is a specialist in toddlers who display sensory issues so at least I know that's what they feel he has and it's all moving in the right direction :-) I will definitely keep u updated thankyou so much for replying :-) x

He doesn't talk either it's just a repetitive babble and a new sound can stick for a day or so if u no what I mean x

Thanks for the reply :-) he doesn't like to be cuddled he kind of pushes away or tenses up, with his condition TOF/OA he can have trouble swallowing but we have had this checked and there isn't a reason as to why he gags on lumps etc x

I have a 18 month old son named Harry as you can tell from my name lol!!! I have two older children too aged 6 and 4 from about 5 months old I noticed something was different with Harry, he was rolling over or making any attempt to roll over and subsequently didn't meet any milestones at certain ages, I took him to our gp who agreed he needed assessing developmentally. When he was 15 months we went to our local hospital and a lovely paediactric doctor did his development check and indeed he was around 8 months old she wanted to refer him for hearing tests and genetics testing. Also referring him to the child development tea for physio, OT and SALT. He's had his hearing test and that was fine, we are due a home visit on the 1st November from the paed on te CDT who specialises in children with sensory issues and things like autism and PDD. If you don't mind I would like to list some of the things my Harry does an doesn't do and tell me what u think the plan of action will be? Doesn't self feed, won't hold or touch food Isn't walking yet Doesn't like cuddles, never has really Doesn't point to an object he wants Only babbles repeated sounds Doesn't maintain very good eye contact, he will do but only for a couple of seconds Seems to have a meltdown if a loud noise occurs when he's not expecting it, ie: I took him a few times to my older children's school assembly and when everyone clapped he literally screamed and panicked and had to gasp for breath! Spins or rolls toys Opens and closes cupboard doors Bangs his head Hits his ears Does a funny tensing thing with arms, legs and face Waves 4 fingers in front of his eyes And te last few days has done this kind of sideways, upwards glance with his eyes Seems quite happy in his own world playing with toys, well rolling them lol!! I'm so sorry I have gone on and on but I really don't have anyone I can talk to about these things, my other halves family just say oh he's fine etc they won't listen to me :-( Thanks for reading Kelly, mummy to Harry, Born with TOF/OA, one kidney, right sided hemihypertrophy, low muscle tone and developmental delay, my perfect baby boy :-) xxxxxx