My son complains if I feed him anything a day past the best before date.
He also bans me from adding things to food I cook, such as tons of salt, which he needs for this condition PoTS. I also puree vegetables and add the puree to a bolognese. Hoping to achieve his 5 a day.
He also has Gastroparesis so his stomach is not functioning as it should.
He takes a steroid, Fludrocortisone which weakens the immune system and has been on this medication for 4 years now.
So imagine my horror today when an alert pops up on a Facebook Group I belong to.
9 dead, linked to frozen veg!
I scroll through the list, go to the freezer, check the BBE date.
I fed him some with his sausages and mash yesterday with sweetcorn, which has a BBE date of November 19 from Waitrose, 1kg.
His hands have been covered in red spots since yesterday, it could be heat related or because following his visual disturbances last week he has only just started taking all his meds again or down to a packet of sweetcorn. Did it start before or after the consumption of the sweetcorn? He cannot remember but his hands have come up like this in the past.
Where would I be without Facebook?
When my son’s condition started 6 years ago I did not belong to any Facebook group for this condition and not until 2014 when he was finally correctly diagnosed did I even search for any on PoTS. I searched because the paediatric cardiologist told me to, ‘Your son has Postural Tachycardia Syndrome, but do not worry about that it is abbreviated to PoTS’, so basically go home and research it!
Initially, I joined an American group, which was frightening as the USA has huge insurance issues, are really into saline dips regularly. After a year a British parent group was set up and this is my go-to group, thank you to all those parents who have ‘listened’ and advised over the past few years.
In this very hot weather with an overheating son, struggling to maintain his body temperature I asked the question, what others did, the answer came back with a visit to a pet store.
So I trundled off to Pets at Home, explained what I was looking for and why, so as non-dog owners we are proud owners of a large dog cooling mat, which lives in our fridge except at nights!
Thank you for your email. Post 16 is a minefield, nothing is happening unless I personally carry on ring every school with a 6th form in a 10 mile radius. I expect you read the Youth Manager from the council’s email to me as she copied you in. It would appear to my reading of her email that if you do not have an EHCP then you are referred to the organisation commissioned by the council (provides four core services that enable young people to make a successful transition to adulthood; these include impartial careers information, advice and guidance, intensive support and mentoring and youth work) and they just advise but if your child achieves that magical gold dusted document then the council support them with SEN Personal Advisers from Youth Support, making it a two tiered system for post 16 support.
So having appealed to Tribunal over refusal to assess for an EHCP and the council changing their mind, we play a waiting game. How long it will take them to collect all the info required, make an appointment for ed psych and maybe medical assessment? You are more than welcome to add your two pennies worth into the equation.
Who wants a child with a chronic condition which varies daily, hourly and will affect the provider’s exam results and their position in league tables?
The good news is that son has been accepted by KC Hospital for PoTS and numerous tests are lined up the first being a lung functioning test. It does involve a 2 hour journey each way to the hospital as there are so few PoTS specialist around the UK, something the health select committee could maybe look into. The National Hospital turned him down just before Christmas as they are no longer accepting 16-year-olds, it was just a brief trial last year and he would have to wait for his 18th birthday to be referred again. The great 16 to 18 chasm in the NHS.
The organisation commissioned by the council is coming tomorrow at the request of the school to make suggestions for my son’s education options but my son has an EHCP.
So why is the SEN Personal Advisers from Youth Support, not coming?
Have they even been invited?