SEN PARENTS SUPPORT GROUP - Thread 1

[mumofoneAloneandwell]

Hey everyone

this is the original thread that was started for half term:
https://www.mumsnet.com/talk/_chat/5491563-half-term-sen-parents-support-group?page=1

but we’re carrying it on since it’s been helpful

all parents of sen kids are welcome - also those who’s sen kids are now adults!

safe space to vent, share advice, tips and tricks, share good news and bad, and just chit chat and be 🙂

i am a mum of one dd. She’s 6 and is autistic and not yet verbal. It’s just us, no support system so I am thankful for the people on here keeping me company through the journey ❤️

So do you give morning on empty stomach? Xxx

Yes, and she’s adjusted to that really well, alongside the epilepsy meds.

Oh lovely … and no constipation so far ?

She’s had long-term problems with constipation because of her very poor diet, but there’s no indication that it’s particularly bad because of the medication.

Oh lovely well done seems really positive xxx

Is DD on sodium valproate? Have the levels of ammonia in her blood ever been checked? It can have long term consequences.

DD1 has epilepsy and is on sodium valproate. Her ammonia levels were high and she had constipation due to poor diet. The doctors prescribed laxatives to lower the ammonia levels.

Thank you for bringing this up. DD1 is on Levetiracetam. We had an epilepsy medication review recently where we discussed the anaemia medication. The clinician didn’t mention ammonia at all.

Hey everyone, just checking in, loving the supportive chat ❤️

I don’t know if Levetiracetam affects ammonia levels, but sodium valproate can.

On reading AI, it’s not supposed to, and if it’s taken with sodium valproate and ammonia levels increase, it’s likely to be the sodium valproate doing it!

Thank you so much! We were thinking about changing DD1’s medication because of the side effects of Levetiracetam. (She can’t take the full dose.) But this is obviously a good reason to be wary of changing to sodium valporate.

She’s coping ok on the slightly lower dose anyway, thankfully.

I couldn’t tolerate the Keppra rage! It was like living with the Tasmanian devil! I’d ask DD1 an innocent question like

“What do you want for dinner?”

She leapt down my throat, having gone from 0 to 10 in absolute rage in 10 seconds!

Yes indeed, that’s why DD1 isn’t on the full dose! She actually self-harmed when we tried it. She herself won’t consider trying again. Thankfully she is managing on 750mg rather than the prescribed 1000mg.

I feel slightly bad for saying it, but does anyone else just reach the point where their kid is just absolutely winding them up?

We’ve had an awful weekend behaviour wise. Absolutely appalling.

Bruised arms from just trying to go swimming, nearly pushed down the stairs, just lots of aggression.

This evening he ran at me like an actual cannon ball, shoved into me to try and get
round me, and then no more than 30 seconds later did it again. He was angry that time, because fish fingers aren’t instantly ready and he can’t put his hands in the oven to get them out.

I shouted at him “stop pushing, sit down right now” and then he burst into tears. Before standing up to do it again.

I’m genuinely a trained behaviour specialist. I understand entirely that behaviour is communication, and there’ll be an underlying reason somewhere.

But, as much I’m aware that it’s maybe unreasonable, today he’s just absolutely pissing me off.

@SleeplessInWherever Just read the first sentence whilst I was thinking the same thing about my dd!

Shes driving me NUTS today, refusing to eat, whining non stop

😫

We're only human 🥺 - so sorry its been so tough!

You see now why so many are drugged up - SSRIs, benzos and so on

Through this process I’ve learned to never ever ever ever judge another human being again on how they feel about their kids..

sending love …

i have AirPods on … they’re lovely highly recommend !

We choose not to medicate, because when he was medicated he was a shell of himself, really withdrawn and isolated. Couldn’t get him over the doorstep, and he lost a lot of weight.

Choosing not to medicate does mean we get his behaviour spikes with absolutely nothing inhibiting it, but it’s somehow the better option.

Thank you, glad I’m not alone!

I sent him upstairs earlier because the aimless whinging was just giving me a migraine.

To be honest I think we could do with some respite, but trying to get that is like trying to get blood from a stone!

Ha I actually meant so many parents are medicated 😉

what med was he on adhd ones or Respiradone x

I completely understand 🥺🥺 and have sent dd to 'our' bedroom whilst I sit on the sofa and doomscroll until love island starts. Just exhausted!

Playing games = meltown
Drawing pictures = meltdown
Dinnertime = meltdown plus she has to be supervised due to pouring squash on her food and then refusing to eat it

Shes not had a full meal today - will try rice when we watch love island 😒😒

I'm waiting for a personal assistant to come and take dd out for 3 hours a week, but that will take ages apparently

🥺🥺 i'm losing my mind today

Only 3 months until she starts school 🙃

I tried to get dd to stop behaviours by counting down from 5

So i'd go 5, 4 and then look at her

Shes go 3,2,1 and then carry on the naughty behaviour 😒😒😅

perhaps start a countdown game (90 sweeties in one bag and start eating each one daily 🤷🏻‍♀️)

On a serious note I’m dreading school holidays .., how the hell are we going to cope 😫