At my wits end with everything 😞

[Mummabear310]

Long story short since my ds attended playschool I’ve always said there’s a underlying issue which has never been addressed until last year when they see things in infant school as the excuse was “ covids caused this”

he is under school nurse - complete crap

he is under occupational therapy- complete waste of my time

incontinence team referral - not even bothered with us

physiotherapy - only been to one appointment that felt useless

senco - absolute bunch of….

diet team - left me too it with ( he will eat when his hungry)

can anyone guide me on where to go or what to do ? Because we’re left in limbo here 😞

Bump

That sounds exhausting and so frustrating. I'm sorry. What are your son's issues / your concerns?

@Scirocco it’s exhausting!! SORRY FOR THE LONG POST…. He doesn’t eat hardly anything only what they class as “ beige” foods, he takes a lunchbox to school and eats half a cheese string and school tell me they tried to encourage him to eat but he refused. Yes I believe that because I am the same with him at home, no breakfast or anything he just refuses. He is almost 6 and is still in nappies not for the want of trying but he will hold himself all day in school so his nappy does not have to be changed in a public place nor will he allow me to change him at any relatives house. If I take the nappies away he has held himself so much his had bad belly ache and rolling round on floor screaming in pain.
He has hyper extended thumbs and requires pencil grips as he can not hold a pencil without. He doesn’t sleep in his own room, won’t play in his room just avoids it all together. Me and dad can put him to bed 6/7 times a night and he wakes up screaming or gets into bed with us… We’re tired! He doesn’t play with toys unless someone is with him doing it for him. And he can not walk long distances he complains of pain behind the knees. Physiotherapy have said his joints are flexible and he bounces as he walks with a turn of the left foot but no diagnosis. Occupational therapy have said he has sensory issues and has to have constant mental stimulation, then our last appointment she said she now believes his masking and has had to put his case in front of the board as she can’t figure out what his diagnosis could be 😭 sorry again for the long post I just need to rant as no one seems to want to help!

Has he been referred by the GP to see a paediatrician? Sounds like he needs some diagnostic tests under the care of a specialist doctor rather than just seeing the various healthcare professionals (as brilliant as they are!) to get to the bottom of it all. Could be two different things combined maybe rather than one thing to explain all of it? The GP should be able to decide if it's a neurodevelopmental team type pathway or physical (the relevent paediatric specialist). Do either of you have EDS? Or autism?
Sorry you sound really stressed it must be horrible struggling without any answers 😞 and you don't mention the GP on your list although you've probably already tried that? It may take a few visits...

@WalKat Gp referred him for his legs and done a referral to paediatrician this also went through a disciplinary as paediatrician has closed his referral down due to “ lack of evidence “ as preschool put it down to “covid related” reception teacher was…. Well she didn’t even realise he couldn’t hold a pencil or eating lunch whilst in her care. It’s only now his on year 1 the teacher has started to pick up certain traits but not enough for “evidence “ nothing runs in the family on either side. I’ve only just managed to settle him again but within the hour he will be back up. It’s stressful not being able to get the right help for my child when I can tell there’s something going on. 😞

Need some help!! So ds has been playing up terrible won’t go into school , won’t wee in his nappies, won’t eat out in public or at school etc… Gp has diagnosed with server childhood anxiety and has recommended removing him from school to home educate as medication not a option right now. Awaiting paediatrician appointment for assessment of adhd or autism. Now the issue I have is me and my partner both work and it’s topped up by UC. I can’t work if it’s advised Ds should be home educated, will uc still pay or would I be expected to work? Yes I’ve not long applied for dla for him. Anyone?? X