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A bit broken
  • HannahH29
    Posts: 49
    Hi everyone,

    It’s been a while since I have posted, it’s all been a bit much of the last few months. Long story short, my son was diagnosed with PDA and ADHD last year and he turned 6. Every day is a constant battle as I’m sure you all understand! He is currently on Equasym XL 20mg and this is further affecting his sleep ( it was bad enough), therefore exacerbating the symptoms. The anger and aggression can obviously be a fight or flight response but he will wake regularly at 3am ( sometimes 1am) and not go back to sleep. He is angry, aggressive and demanding snacks and his ipad. If he doesn’t get it, he will shout the house down and we Have to prevent this as he has two twin brothers aged 2.. He’s in our bed ( one of us has his) as he is too anxious to sleep alone and we try to explain that he can watch his iPad quietly but mummy and daddy will be sleeping next to them ( tbh at this point I couldn’t even stay awake even if I tried). He will then jump on us ( and he’s a big boy), kick his dad in his privates, hit us in the face and more. This morning at 3am he was lying down on the bed and bounced his body up and down like he was having convulsions, it was scary. I understand some of this could be sensory but I think it’s more anxiety related and I do believe the meds are causing the sleep issues. He has melatonin (3 tablets) which works to get him to sleep but that’s it. Has anyone had any experience of anti anxiety related medications? I took him to art therapy this afternoon and he had a meltdown about going ‘ I won’t go, it’s wasting my time’ and screaming in my face, hitting kicking ( the anger was upsetting to see). He met the therapist and was a perfect child, going in happily ( even without me) and came out raving about how good it was and how he wanted to go again. He came home, smashed eggs in the kitchen, hit his dad and punched me in the stomach and was running up and down with riotous behaviour. His dad had to take him out for a run to try to calm him and keep his brothers safe. Tbh we are at crisis point. I’m am stupid mum, bloody mum, shut up stupid, I hate you. I try to remember this is not him talking but it hurts. We don’t have a huge amount of support around and can’t pay privately for anything else as paying for the art Therapy if he continues to go. I’m just really feeling it today and at a low point.
  • RubytuesdayRubytuesday
    Posts: 339
    Hi, I’m so sorry to hear you’re having such a tough time and lack of sleep on top of it all is so difficult. You may already have seen it, but if not here’s a link to the family pages on this site, there’s some great advice there:
    https://www.pdasociety.org.uk/families
    Also have you had a look to see if there’s a support group in your area? I know I’ve found talking to others in a similar situation to be an absolute lifesaver! Here’s the link to the list of support groups:
    https://www.pdasociety.org.uk/resources/Support-and-advice/pda-support-groups
    Is your son at school and if so does he have an EHCP or any additional support? I have a 14 year old daughter with PDA and school has been a massive source of stress to her and us over the years... She ended up leaving her mainstream school and the meltdowns massively reduced... I’m wondering if school could be causing some of the stress that he’s showing at home?
    Really feel for you, it’s so so hard xxx
  • Em83Em83
    Posts: 98
    Hi it is so tough I totally feel what you are going through my son is on anti anxiety medication it works the opposite to the one you are on and makes him drowsy so he has it at night alongside the melatonin. It sounds like anxiety would be a huge factor but also if he is not sleeping well then his tolerance levels will be much lower as well. Could you speak to them about reviewing the medication if you feel it may not be helping how it should be? when we were at crisis point we managed to get some respite through the local council which helps a little but we have found our best support other parents that really do understand it. xx
  • RhanHRhanH
    Posts: 1,168
    Hi HannahH29, I'm going to send you a private message - have a look in the 'messages' tab to read.

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