EWO round 2

[jenk1]

well ive just been informed today that i will be getting a call or a visit from the very nice EWO lady.

this is due to DD having time off school with anxiety despite her

being assessed by camhs
having medical problems both bowel and bladder.
she refuses to go in on a monday as they go swimming and shes very anxious at the change,all school have offered is for her to go in year one class and she started crying and said no.

soo i shall wait for the "nice" lady to phone me and if she threatens me like she did last time with DS when he had time off school i shall tell her to go ahead.

streuth its the least of my worries at the moment especially as DD has ANOTHER UTI,this is her 7th since feb, we have written to her paed and hes brought her appt forward for the week after next.

Oh Jenk, so sorry. Your poor DD. She really needs a bit more understanding, doesn't she! I hope that the paed can help and that you can tell the EWO lady (nicely) where to get off!!

it's so annoying, as everything in their system gets triggered automatically on numbers without taking kid's issues into account. still a nice paed letter should get nice lady to bog off.

/hijack - wanted to chat to you anyway about language delay - SALT/school reckons that DS is no longer delayed - he's much improved but really

oh yes thats what happened with DD, went from needing an ICAN place to having no delay/difficulties whatsoever,we were like WHAT!!!!

do you think he still is delayed and needs help?

he blags manages very well at school, but outside such a structured environment I definitely feel he still needs some support conversing/socialising etc. It irks me that so much hangs on the standardised SALT tests where DS looks at pictures and tells a story based on the pictures. He can do that fine well these days - but withdraw visual supports and put him on the spot in conversation and results can be erm inconsistent........SALT agreed that his concepts/general understanding based on concepts were behind, but felt that was inevitable that he needed time to catch up on because of his period of language delay.

She's not quite discharged him - but is not booking a review - she will see him again if school or me ask her to. Over summer holidays I will get 2nd opinion from private SALT.

snap!!

at the tribunal last year the salt and the ican suddenly produced a report the day before based on the renfrew (i think) scales where DD,s language had come on in leaps and bounds,im pretty sure this was a picture test which DD was good at, however she still has problems in turn taking,getting her to talk about things that arent her obsessions and she still doesnt have the understanding that you,d expect from a 5 year old.

shes being assessed at the mo by CAMHS if she had been assessed last year and given the support she needed (and if certain professionals hadnt been economical with the truth during a tribunal) we wouldnt be in the shite situation we are now where she is school refusing and we are being threatened with the EWO, SIGH...................

this has dragged on so long for you, as you had so many concerns before your DD started school, I hope that CAMHS involvement is finally helpful. Have you any idea what's causing the UTIs, is it down to all the attempts to toilet train her despite her phobias?

yes think it has something to do with it as her UTI,s have got more severe since starting school,i suspect shes holding on during the day,i question her and sometimes she smiles and says yes and sometimes no.

she does not want to toilet train at home tho,she will only go on the loo after a bath as we have made it her routine.

Hi Jenk, my 4 year old son has medical problems which include recurring uti's, his paed put him on a low daily dose of the anitbiotic trimethorpin a year ago and he hasnt had a uti since. such a relief because it makes them so ill doesnt it, perhaps you could mention this to the paed as a possibility for your daughter

hi brandy,

DD had a bad reaction to trimethorpin when she was younger,breathing problems and a rash all over her so cant have that which is a shame because we,ve been told its the most effective Anti b for a UTI.

she has been on a low dose of cefalaxin since feb but it hasnt touched her,it was her paed who put her on that,at the moment nitrofruantin which is working but as soon as she comes off it the UTI comes back.

dont know what hes going to suggest,maybe to keep her on the same one at the mo.

"SALT agreed that his concepts/general understanding based on concepts were behind, but felt that was inevitable that he needed time to catch up on because of his period of language delay"

Then he has a language delay. Silly SALT contradicting herself.

I can't remember all the details of your daughter's difficulties Jenk just wanted to tell you about DH incase any of our experiences enlighten you at all.
DH was late to potty train (according to MIL) and has never been able to pee on demand, didn't use the loos at school and uses public loos with difficulty. He managed most of the time as an adult but developed full blown Paruresis about five years ago, which caused huge problems (he could only pee at home when everyone was out of the house (or in the bath!)but he didn;t tell me this, just acted angry and agitated which was unlike him.). He got help from an NHS pyschologist because he nearly had to give up work and in the end it was Eye Movement Desentisation Treatment that was the only thing that worked (after trying other therapies). He has a tendancy to anxiety and had had a slight panic attack in a public loo and the memory of this was what triggered the difficulties. He is fine now (have never seen him pee though!).
DH had a few traits of AS as a child though you would be hard pressed to spot them now (unless you are an expert like me, lol.).
Hope this has not been totally irrellevant, I post about it every now and then as it is such a poorly understood complaint.

thanks for telling us about your DH,s problems allytjd, i really appreciate it

i do think part of DD,s reluctance to toilet train has been because she associates the toilet/potty with weeing and pain, shes had UTIs since she was a baby, and i also think her ASD plays a significant part as well.

she has been seeing a psychologist since Feb for it but tbh shes very young and appears to have her work cut out,we have been rereferred back to the consultant psych now,but all the professionals are telling us we cant rush her.

the fact that she goes to the toilet in school but wont do it at home is confusing,i dont understand that but we,ve tried everything they,ve suggested, am hoping that the paed will refer her to an urologist to see if there is an underlying cause.