So, yes, we have had another diagnosis for Ava-Jane. This time it’s coeliacs disease, or celiacs disease, for my more US inflected readers. Apparently it is quite common in people with Down’s Syndrome, though to be honest, I had not heard that one.
I am going to have to add two new bullet points to the blog About page https://misliterature.wordpress.com/about/. The blog About page is a hot mess where I have added and added without ever subtracting. Maybe because I edit as a day job and I am very reluctant to edit by night.
But on the About page there is a bulleted list of Ava-Jane’s various ailments and afflictions.and there are a couple more to add.
This autumn alone, Ava-Jane had been diagnosed with Lennox-Gastaut syndrome and Coeliacs Disease. You really shouldn’t have two such diagnoses in the same season. Ideally you’d have one this autumn and then wait until next spring to get the next diagnosis.
I have to admit I got the giggles when Fo first told me as it seemed to be so preposterous that she should be getting another diagnosis so hot on the heels from the last one.
We don’t quite know all the details yet. She was having a blood test for something else entirely – to see if the cannabis oil she had been prescribed to help with the seizures was having an adverse effect on her liver… it was, of course having this adverse reaction. So she still has to have another series of tests. But knowing Ava-Jane, as I do, when there’s a potential worst-case scenario, that’ll be her scenario. When we were told that she might need one further heart operation after her first heart operations, she had two further heart operations. When we were told that it might be leukaemia or an issue with her spleen, it turned out to be leukaemia. When we were told that inserting a gastric tube would be a simple procedure, she ended up with a sepsis that nearly killed her. So when we hear that “it might be coeliacs disease”, we are fairly confident that it will, in fact, be coeliacs disease. And as it is fairly common in people with Down’s Syndrome, we shouldn’t be surprised really.
The good news is that thanks to the aforementioned gastric tube, we have pretty much total control on what goes into her. From my light reading on Google, it seems that coeliacs is totally related to gluten, so if we can eliminate her intake of gluten, problem over. Chances are that it might be a little more complicated than that… these things tend to be.
I don’t have much to say really, which I am sure will be a relief to many. I had better leave it there – it’s Strictly time!
I’ll tell you what’s not easy – putting gloves on Ava-Jane, that’s what’s not easy. One hand is very wriggly. By the time you have got one finger in one slot, she’ll have put two fingers in the next slot, and the other is all curled up and totally passive, which presents its own problems.
I haven’t blogged for a while and have jotted all sorts of things since I last did. I’ll try to sort them in order of relevance and general interest as I understand it. So I will start with Ava-Jane and end with Nigel Farage.
We have had more information about the new diagnosis that she has received for her epilepsy – the Lennox-Gastaut Syndrome.
It’s degenerative, i.e. it’ll get worse, she’ll get worse. TBH we have seen this happening, Fo mentioned how much she struggled doing the fist bump-high five-down low-click routine that she used to do so well.
The only real advance we have seen in her as she progresses through her teenage years is that where she once watched Peppa Pig on incessant repeats, she now watches Strictly Come Dancing on incessant repeats. We try to suggest alternatives – when she was watching Peppa, we’d propose any of the far better kid’s shows out there like Bluey or Hey Duggee but no, it had to be Peppa.
And now it’s only Strictly and strictly only Strictly! She loses her shit if it’s not Strictly. She actually welled up when she thought I wasn’t going to put Strictly on. I was! I just wasn’t doing it quickly enough.
She still goes up and down. When I made some notes about her a few weeks ago, I was very down-hearted as she seemed very weak and unresponsive. I took this to be the Lennox-Gastaut Syndrome really kicking in and she was going to be like that or worse from here on in. But no, she turned some sort of corner a week ago and has been on hilarious form ever since.
We went to the zoo together last Sunday, just the two of us and had a ball. We have also been watching a lot of rugby… this hasn’t been great. I spent a lot of money on a subscription to watch the rugby and all I have seen is Scotland lose, which really wasn’t the idea at all.
We also had a really good dance together today – listened to some great tunes – Diana Ross, Womack & Womack, Sly and the Family Stone, Gil Scott Heron.
[After I had written the above, I was planning to leave the blog post to to watch the Strictly results with Fo and AJ, and then return to give it a quick edit, and maybe double check some Farage facts (it doesn’t do to be disseminating untruths about these serial liars, vis the BBC below). But all of a sudden Ava-Jane suddenly started projectile vomiting. No idea what that was about, but it was quite alarming. We changed her out of one lot of pyjamas, gave her a good wash down and then she vommed all over again, so we had to repeat the process. We have put her to bed but she is running a high temperature.]
Fo’s Facebook Post
This is from a Facebook post on an epilepsy group from Fo:
I’m not sure if I want advice, reassurance or lived experience. Our daughter (16) has drug resistant epilepsy. Keto worked for a year, then seizures returned with a vengeance. Tried every AED, including CBD. Referred for VNS. Recent EEG showed 40 seizures (lasting 10-30 sec) at night plus fairly constant activity during day.
We have an audio monitor but no sleep monitor. I’m not sure of the advantages of having one as we don’t take any action for short seizures. We normally check on her 2 or 3 times a night, but it takes its toll on our sleeping/health and I don’t think we could do 40x per night 😳.
Neurologist has said she’s high risk of SUDEP (Sudden Unexpected Death in Epilepsy) and life expectancy isn’t likely to be long… she said (and we feel) that quality of life is the most important thing. BUT would we feel we could have done more in the future?
Not necessarily looking for answers, but interested in other families in similar situation.
Thank you!
PIP Assessment
So Ava-Jane, now that she is an adult has moved on from needing the dreaded DLA (Disability Living Allowance) assessment of her disabilities , and moves onto the far more dreaded PIP – Personal Independent Payment. I would hate to simplify this but essentially the higher your score, the higher the payment you get, up to an actually quite low threshold. You are assessed in various categories and they tot these all up and if you get over a certain number of points, you qualify for highest level of support – enhanced!
The good news is that AJ got high enough points to qualify for the enhanced level of support. All well and good, you might think – of course she did! The system is working as it should.
But if you look closely at the report and how the points are awarded, you can start to see where, for people who are more edge cases, there might be holes in this system. Ava-Jane was not assessed in this process. The system is outsourced to Serco and they have made these calculations without seeing her and base them all on what Fo submitted. Points seem to be allocated entirely randomly.
Ava-Jane has got 4 out of 8 for being able to prepare and cook a simple meal. Putting aside the fact that she doesn’t eat food, yes we do sometimes involve her in cooking. And by involve her, I mean having her in the kitchen… but not near anything hot… or sharp… or breakable. You might get her to stir something once, but you’d want to have a firm hold on the bowl so she doesn’t chuck it on the floor and while you’re at it, a firm hold on her left hand so that she doesn’t smear either you or herself with whatever the gloop is that she is stirring. So is she 50% able to prepare and cook a simple meal? Errr.. no! And what if she wants to prepare and cook a complex meal?
And she also got a 50% score on needing another person to manage her toilet needs. Well if doing the actual peeing and pooing counts as 50% of the task, then fair enough but I have to say, I don’t see it that way, especially if the pooing is in her nappy (sorry “pad” – nappies are for babies!)
But then she got 12/12 for not being able to express or understand verbal information, even from a trained professional. Bollocks! Yes, you do need to know what she is going on about but she can express herself and she certainly understands loads.
And if they can get it so wrong for Ava-Jane, what could happen to someone who is far more borderline? They might have very serious needs but drop out of the enhanced rate and be made to really struggle.
We are not talking about a lot of money here but it might mean someone not being able to afford to wash properly on a daily basis.
At the zoo
BBC
Unless you have been hiding under a stone, you’ll know that there has been a bit of a hoo-ha at the BBC, the Beeb. Someone screwed up an edit in order to make Donald Trump look bad (I know!!) and so obviously all sorts of senior people who would not have been involved in this slipshod edit have had to resign and Donald Trump is threatening to sue the BBC for $1 Billion, because, well because of course he is.
So here we are and of course all sorts of unsavoury characters are lining up to demand that the BBC be defunded.
You can tell a lot about a person or organisation by their friends of course, but also, by their enemies too.
Ranged against the BBC, we have Boris Johnson, Nigel Farage, Donald Trump, Rupert Murdoch, and Charles Moore. Stepping up alongside them is the Russian Embassy.
So when you bash the BBC, that’s who you are standing next to. And just in case you’re the kind of person who might have a certain fondness for some, or even all, of the above. Let me tell you, there’s a whole bunch of lefties who hate the BBC quite as much as you. If you hang around on leftie social media, you’ll hear a lot about how Laura Kuenssberg is a Tory or how the whole organisation is transphobic. The BBC is also heavily criticised for its attempts at balance in discussing the climate change where it will have one scientist representing the 97% of scientists who believe that climate change certainly is not a hoax debating with a crank who represents the 3% and is probably financed by a climate-change denying lobby group.
And if you are still not convinced that you might be on the wrong side if you think that the BBC should be defunded, here is Liz Truss making that same point and lending her support for a foreign potentate to trash a venerated British institution.
Everyone hates the BBC for not being biased enough towards their biases, which is a pretty good indication of it being, generally, pretty straight down the line.
Farage, currently being paid a small fortune to appear on GB News and who was a regular contributor to Russia Today, is a massive critic of the BBC’s “left-wing bias” and of their silencing of the voices on the right. He has appeared 38 times on BBC Question Time, even though he has only just been elected to Parliament and leads a very small party there.
Which brings me on to…
Nigel Farage
As we can see in Liz Truss’ words above, these people who trumpet their patriotism, can be Britain’s harshest critics, those who really do Britain down.
Incredibly, we have reached a moment in time where the Reform Party, led by Nigel Farage, have a massive lead in the opinion polls over all the other parties in the country.
Prime Minister Nigel Farage is an idea that we have to conceive. It’s, as the young might say, “a thing”.
You have to give it to the man; he is by far the most successful and influential politician of our age. So many of his fellow travellers from Robert Kilroy-Silk to Boris Johnson have crashed and burned and been banished to obscurity, and all the while, he has virtually destroyed the Conservative Party and is well on the way to doing the same to the Labour Party.
And so here we are, with the idea of Nigel Farage being a realistic proposition.
Are we mad?
You know that guy who had one idea? You know how that one idea turned out to be absolutely rubbish? Let’s make him Prime Minister and see what his next idea is?
You know how Trump is turning the US into an authoritarian state where civil rights and the rule of law are being torched? Let’s make the guy who hero worships Trump, Prime Minister and have some of that over here.
We live in conspiratorial times. We live in a time when people can weave together any number of unrelated dots into a conspiracy story. So, my dear conspiracists make what you will of these dots:
Farage has spoken admiringly of Vladimir Putin. When asked which politician he most admires, he answered, “As an operator, but not as a human being, I would say Putin. The way he played the whole Syria thing. Brilliant. Not that I approve of him politically. How many journalists in jail now?” (I think it is important to include the whole quote, to show that Farage clearly held reservations about Putin. One of Farage’s talents, is knowing just when to step back from the brink from saying anything utterly outrageous.)
Farage’s has multiple appearances on Russia Today. The great advocate of free speech has appeared 17 times on a TV channel, so controlled by the Russian state that it would make Pravda look like a bastion of independent media.
The findings of the investigation into Russian interference into the Brexit vote have never been published.
The leader of Reform in Wales has resigned after admitting to taking money from the Russian state to make statements in favour of Russia during his tenure as a member of the European parliament. Admittedly Farage says he did not really know this person who had a very large role in his very small party, but photos like these exist of Farage and this person he did not know:
And please berate me for banging on about Brexit but if you like a conspiracy, shouldn’t you be concerned that there might have been some Russian interference? And it wouldn’t have had to be particularly effective and it just needed to swing 0.4% to make that 52/48 decision that had such a cataclysmic effect on this country go the other way.
I am old enough to remember when the Russians were the baddies. It is quite astonishing that we have reached a point in history where substantiated claims that Russia interfered in an election in the US and a referendum in the UK and swayed both these countries profoundly off course is not a matter of concern.
We can’t allow what is happening in the US to come over here.
Misliterature 