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Paed Appointment 🙏

10 replies

anon1411 · 24/03/2023 17:16

Just wondering if anyone had any advice or tips for certain things to really hone in on at this appointment.

Obviously we have submitted multiple reports from ourselves and other professionals but sometimes the discussion with the doctor is just as important as all the paperwork.

A little background:
So our boy is 4 and a half and since being little has been very advanced with milestones and developmental wise. He turned 20 months and everything changed, he stopped eating, his behaviour changed and his sleep went from bad to worse.

He became very sensory based and still is to this day. He only wears joggers and they have to be grey blue or black. He will not wear hoodies or jeans or anything like that. He refuses to wear coats so as you can imagine in the winter this was difficult. He became obsessed with numbers and letters and writing to the point he self taught to count to 100 and to write letters by the time he was 2.5. He became obsessed with a TV program and would watch it on repeat until he learnt the narratives etc.

His eating went from nearly everything to now bare minimum. He does not eat foods that are cooked apart from Chicken Poppers and this is all he has eaten for his tea for the past 2 years. He will eat the same pack up each day too. He flat out refuses to eat any other food. He does not eat bread products of any sort and he is obsessed with crisps. Like obsessed

His sleep has always been bad but he will wake up 5 to 6 tines a night, it takes him up to 2 hours to go to sleep and even then he will probably be through to our bed shortly after. He has to sleep with about 15 soft toys as well as his favourite proper toy at the time and they all have to be placed specifically in his bed and the quilt can't be touching them at all.

He struggles massively to self regulate and he goes 0 to 100 like a switch. He is a very angry little boy and has a lot of anxieties. He carries toys around with him all day at Nursery as he worries that if he puts them down someone will take them. To the point where he has often carried about 8 to 10 toys around with him for 6 hours straight and not done anything else to avoid the toys not being with him. He can't bare people sitting near him or touching him and any loud noises causes a lot of stress. He does not like being touched even for cuddles and kisses by family members. He gets very verbally abusive to others if any demand is put on him and he has started to lash out physically too. He is a perfectionist and if he does something wrong or makes a mistake he will repeatedly punch himself saying he hates himself and he's stupid.

It's almost like his intelligence is that of an 8 year old but he's stuck in a 4 year old body alongside the sensory and self regulation issues.
Sorry for waffling but I dont have anyone I feel understands. 🥺

OP posts:
FloatingBean · 24/03/2023 18:30

Ask to try melatonin. If DS already takes this ask to try something else or for a referral to a sleep clinic. I would also request an referral to OT, SALT and the eating disorder service (or a more specialist ED service if your local one doesn’t assess and support DC with ARFID).

Separately to the appointment does DS have an EHCP? What support is the nursery providing?

anon1411 · 24/03/2023 19:23

Thank you for even taking the time to read my massive post let alone reply ❤️

He has recently had a sleep study, doctors are concerned that his tonsils are extremely large and disturbing his sleep and hat he may have possible sleep apnoea too. We get the results in May 🤞

He has been seen by SALT a few times now and his speech is advanced for his age, however the last SALT we saw was amazing and noticed some quirky mannerisms in my boy and noticed some of his responses were very atypical for a child of his age.

Amazing about the eating concerns. I will definitely be asking for that 🙏

No he doesn't have an EHCP, I've been told by many they don't think he needs it. His nursery erm it's difficult so I actually work at the Nursery he attends. I have worked there for years so my DS has grown up at work with me too. But they aren't exactly supportive 😔 they keep telling me it's a phase or it's just because he's clever that his behaviour is the way it is. He does mask fairly well though however the past 12 months he's unable to mask well at all and they've seen him on his worst days yet they still don't really take his needs into consideration or try to understand the way he is. I don't mean this disrespectfully to anyone but I think just because my son isn't typical hand flapping, non verbal, tiptoe walking obviously autistic they just don't see what I do. It's hard.

OP posts:
FloatingBean · 24/03/2023 20:12

Personally I wouldn’t listen to anyone telling you an EHCP isn’t needed. Sadly many professionals, schools and LAs tell parents their child doesn’t need or won’t get an EHCP, but their parents go on to successfully apply themselves. You can apply yourself. On their website IPSEA have a model letter.

SALT is about far more than the physical ability to speak, it sounds like the last SALT is alert to this which is good as some fob parents off if a child’s physical speech is OK.

I would still ask about melatonin, but they may want to wait until after the results of the sleep study. If DS has sleep apnoea that may well be affecting DS’s behaviour.

PritiPatelsMaker · 25/03/2023 11:09

I've read all of your post and unfortunately I can't offer much advice that already hadn't been given. I was just wondering if a bag to keep his toys in would help him feel more secure? He could carry them around in a little backpack or get an adult to put the bag up high where other children can't reach it?

Also, have you read "The Explosive Child"? It might help with his meltdowns

Did you say that you have an appointment for assessment lined up?

anon1411 · 25/03/2023 12:39

Thank you!

He does often find his own little tub to put the toys in and he will hide the toys himself sometimes but alot of the time he gets told he has to share the toys at Nursery. So then he ends up without them and a whole lot of distress and anger which he naturally comes to me with cos I'm there too and it's hard work. Very hard work. I try and be really professional but its hard when they're not understanding his needs.

Yes so 3 weeks time he has an appointment with Community Paeds 🤞 I just really want to make sure I give everything I can in this appt because I don't know what I'd do if he got discharged again

OP posts:
PritiPatelsMaker · 25/03/2023 12:44

because I don't know what I'd do if he got discharged again

I find it helpful to write things down too. If he does get discharged would I don't know what I'd do if he got discharged again Caudwell Children be of any use?

PritiPatelsMaker · 25/03/2023 12:47

Sorry that was just jibberish 🚗

Meant that if he does get discharged, would Caudwell Children be of any use?

Have you spoken to the school that he's due to go to in September or haven't you been allocated one yet?

anon1411 · 25/03/2023 17:25

He hasn't been allocated it yet but the two schools we put down as options we have explained his needs and the way he is behaviour and mannerisms wise so I have already started that process... just waiting until April and we find out for definite and then I can start the transition process better.

OP posts:
openupmyeagereyes · 25/03/2023 18:39

because my son isn't typical hand flapping, non verbal, tiptoe walking obviously autistic they just don't see what I do

Mine isn’t either but he was still
diagnosed as autistic just before he turned 4 as are many without ‘classic’ symptoms. He has some of the behaviours you list (food, sleep, can have meltdowns) but the other things you mention were not an issue for him. Someone experienced will be able to spot it, nursery staff are not experts.

PritiPatelsMaker · 25/03/2023 18:51

Are SLT involved at all too @anon1411? There is a progress checker here from Talking Point. I'm just wondering if SLT can help with him expressing himself thereby, hopefully, reducing the meltdowns?

If you spoke to my Dd you would not think anything was wrong with her speech but Emotional Language is almost entirely missing.

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