Pos PDA + medical appointments

[Theantsgomarchingtwo]

Hello,
I really need help!

My daughter (6) is refusing medical appointments that we need for further support - when I say refusing she will: either curl up in a ball, hands over ears and scream for upto 40 minutes then run out of the hosptial room, completely freeze at the doctors doors and grunt, become more and more distressed then run. Now she is refusing to get into the car / keep her seatbelt on / she will attempt to climb out of the car window.

We've tried: bribery, toys, screens, explaining the reasons behind the appointment, social stories, youtube, role play, play therapy, food.

We're really really struggling, some of the tests (cognitive) and eeg will help us find the right support for school and/or medication. I'm at a loss on what we can do as she will not engage and is increasing becoming worse (behaviour wise).

We have a genetic testing next week and I'm very anxious going forward / unsure how we can make sure it goes ahead. We have had four failed appointments now.

A bit of background:
I have a 6 year old daughter. Diagnosis of complex epilepsy, she's currently on 2 daily meds and rescue meds. Previous history of status epilepticus x 3, has tc, absence and atonic seizures. Diagnosed at 5 years old. Pre seizure typical development, lots of friends at school, took part in dancing (on stage!), no concerns with fine motor/ behaviour or ability to learn she was making amazing progress with her school work & phonics. Then she had her first big seizure out of the blue, developed Todd's paralysis and as the years progressed shes now developed speech delay, motor skills regression, eye sight has regressed so she is meant to wear glasses (but refuses) / were under the hosptial, cognitive wise she's fallen hugely behind at school and suffers fatigue. She has regressed behaviour wise and has incredible rages- screaming episodes and presents with a PDA type profile - will not brush her hair or teeth (five of which need removing) won't wear shoes or particular clothing, refuses anything you ask (usually resulting in screaming/ hitting / biting) finds busy places overwhelming and will elope. Is incredibly controlling with her siblings and friends and no longer takes part in dancing (due to fatigue and the noise). It's like we have a completely different child.

We are under the neurologist (nhs) and have paid for private psychologist for cognitive assessment as we're unsure how to support her in school & home life. The NHS have informed us that its just part & parcel of her epilepsy and crack on, we have seeked support from the HV/GP/ social services but have been told that she is too complex for them to help and try school. School are unsure how they can support further and have referred us back to early help / the gp. As you can tell we are going round in circles!

Our daughter is happiest at home with her playdoh and toys- can anyone offer any advice or have been in a similiar situation?

Thank you xx

I’m so sorry this must be so distressing for you and your DD.
It’s good that you are trying to get a cognitive assessment as you need a baseline. I’ve worked with a child who regressed following regular fitting. She became more withdrawn and did lose skills.

Why were school unable to access EP time? Had they used their allocation?
Have you requested an EHCNA or have school requested? The LA will fund the EP assessment during the process.

Have they been using playdough in school as a strategy or to assist learning? Maybe a piece of BluTac as a sensory fidget.

It’s difficult to give specific strategies with her complex needs. Soft silicone finger brushes or a musical toothbrush ( child can hear) and non foaming or bland flavour toothpaste are recommended for tooth brushing.

EPs and specialist SEN teachers are experienced in observing and collecting evidence for support when children are unable to participate in more formal assessments.

I’d be asking for an urgent multidisciplinary meeting in September between health and Education to discuss the plan moving forward or an early review of there’s an EHCP in place.

Ohh my goodness thank you so much for this reply. I didn't realise you could buy silicone toothbrushes I'm off to order one on amazon now thank you.

With the ehcp....we had hoped to gather as much evidence (at the moment we have a handful of reports) so my plan was to have the cognitive/ mri/ gene test / prolonged eeg for september start and then apply but unfortunately with my dd reluctance this isn't going as I had hoped. My eldest is in specalist school (autistic) and we had so much paperwork & hoops to jump through i was concerned they would reject my daughter due to not having enough reports or evidence. The school have got a sen plan in place but no ehcp. However I will ask for a meeting before we begin a new school year (to be honest I'm quietly concerned that this year is going to be tougher than previous). I love the idea of using blue tack - I'll jot this down for when I speak to the school.

Thank you again for your reply I can't even begin to explain how much it means to have someone to listen! Xx

I’m a retired SEN advisory teacher/ special school teacher and loads of autism experience personal and family DD.

Happy to listen and help if I can. Feel free to PM
You could also speak to the Sen parent advisory service or the LA SEN team about fast track and additional funding. There are usually things they can do especially with complex medical needs in the mix.

I have a 5 yr old with epilepsy. He hasnt regressed per se. But I recognise some of this. His is partial focal so unless you know you don't spot. But he had been having them since 9 months - just took 4 years to be diagnosed.
Things we have found helpful:
Melatonin. Can't do without it now and reduced seizures.
Genetics - ours were negative (getting the blood OMG) but I noticed on letters they still think there might be genetic component they just arnt aware of yet.
Telemetry - battle - get really tight fitting thin hat like the end of a pair of tights and put over the top. Leads should be in a mini backpack. Get the glue off with washing up liquid.

Strawberry / watermelon toothpaste and toothmousse (Amazon)
Play putty (different strengths)
Chew toys
Ear defenders
Hair in plaits and always tangle spray
Weighted blanket
One of those stretch zip up suit bag things (can take into hospital)
Wobble cushion
Most of these are good for ND too and you probably already know them but sometimes I forget things and then remember them again to try again.
Hospitals - they must have a play therapist ?
Can you go for coffee and cake there with no appointments to get her used to it again?
Lastly - it's hard, having a child with epilepsy. Ours appears to be well controlled ATM but the watchful waiting never really ends. This week they've slept loads - like they do when they are seizing at night. We can't tell if it's seizures or tiredness. Hopefully the latter but the constant worry takes a toll.

Are you on any PDA-specific support groups? I'd think you'd get better advice there. Have you had much PDA-specific training?

She sounds very dysregulated, poor thing.

For us, the only thing that really works is accepting that my son's inability to do things is not his fault and not under his control. We make it clear that he doesn't have to do things and respect that decision. However, we've not had medical-related trauma.

In general, I'd recommend declarative language, low demand, low arousal parenting & working really hard on radical acceptance and working with your child to provide coregulation and stop trying to be "in control". Those are all big lifestyle / attitude things though and won't help you with the next appointment.

The very fact that you have tried so hard to get her to appointments means that you have been unwittingly placing huge demands on her, which will be one of the reasons she finds it so difficult. That's not to say its your fault, but demand avoidance is basically caused by an accumulation of stress, where the primary stressor are a perceived lack of autonomy or lack of equality. Obviously you trying to get her to appointments will be perceived as a lack of both, which is literally telling her brain that she is in mortal danger.

Unfortunately for many PDAers, school is a significant factor in their baseline high stress levels.l, so that might be worth thinking about. She is likely to need an incredibly low demand approach in every other area of her life to give her the bandwidth to cope with the medical stuff.

I would not recommend trying to get testing at this stage, but if you can, I would make sure she gets at least the minimum RDA of vitamin D, with magnesium alongside - but only if you can find a way to do so without her knowing about it. Low vit D is a known contributory cause to low seizure threshold, and deficiency also has a massive negative effect on mood / behaviour / demand avoidance. Both my children stopped having absence seizures once they were getting enough vitamin D and the one with tonic clonic seizures had fewer once his levels were better. The non-PDA child had vit D deficiency diagnosed on GP blood tests. We couldn't get the PDAer tested, so we follow a specific protocol for vit D supplements and use their recommended amounts for their weight.

You can get vit d omega and magnesium gummies on Amazon - most adult doses are two gummies so just half the dose.