Carers week

So it’s carers week and if I see one more social media post on twitter from a politician thanking us I may punch a wall. Equally annoying are comments/ quotes like these:

“ I think what you do is amazing” “I couldn’t do what you do” 

We are normal people ( well fairly normal in my case). We do it because we love those we care for. We aren’t all lovely and naturally nurturing. More often than not we are “assertive” and “difficult”.

“God never gives you more than you can handle”

Bollocks. I passed the “more than you can handle” stage about 4 years ago. Hmm is there anyone I haven’t cried at? 

“God only gives special children to special people”

Fuck off. Half the time I’m an absolute twat- which my husband can attest to. 

Seriously I get the comments, I understand the positivity in the intent behind them but it’s not helpful. It perpetuates the superhero carer identity myth and although I could quite fancy a cape or anything that brings me closer to Captain America ( I’m looking at you Chris *wink*) attitudes like these throughout society can be harmful. They suggest we can always deal with whatever is thrown our way, putting unintentional pressure on us to just keep on going. It also cleverly takes the onus away from the budget holders who could make a difference to carers by providing the right sort of support such as respite and paid carers. If carers are so amazing and wonderful and oh wow etc surely they don’t need help...

Boris says we are “inspirational”. Well Boris can fuck right off. 

The stark reality is that “non working” carers or those earning below £128 per week are given £67.60 per week in carers allowance for proving often 24 hr care. It’s not a lot. These are people who struggle to fit in work due to their caring commitments. The person you care for always comes first. Meetings, reviews, appointments, deliveries and assessments are time consuming and the assumption is always that you are available. And that’s if they are well. Frequent or prolonged hospital stays put another wrinkle in the working plan, and why I myself gave up working back in 2012.  If life becomes (more) difficult as a carer professionals may be quick to suggest you work less or actually give up work to make things “easier” on yourself. For some of us this isn’t an option for financial reasons. For others working is a break from caring, and provides the human contact that can be missing from our lives, caring can be incredibly lonely. Also why the very fuck should we give up working? All ( ALL!!!) we need is flexibility and better access to services and support.

With carers nationwide already donkeys on the proverbial edge COVID came along and took an already tenuous support system and fucked it over. “Due to COVID” is a most excellent all encompassing get out to explain away delays in so many things.

The general population have struggled with lockdowns and isolation away from their support networks. These feelings are multiplied for carers shielding relatives and friends due to their vulnerability. It’s been terrifying. 

Returning to my point about social media. It’s not enough to post your praise and respect for carers. We are stressed, medicated, and broken. 

So what can you do to help? You can support us by supporting the people we care for. Make their lives better.

Broaden your knowledge of disabilities including hidden disabilities. 

Be mindful in making your businesses and services more accessible. If morals and ethics aren’t your thing think of the profits. People with disabilities and carers spend money too. You will reap the benefits as good reviews spread like wildfire in the SN and disabled communities.

Be a friendly ear. 

Object to cuts in budgets around health and social care. Push for recognition of paid carers too who do a highly skilled brilliant job for crappy pay. Support an increase in carers allowance. 

Think about your friends who are carers when making plans. Sometimes with a bit more notice we can attend events and happenings. Coming to us can make things so much easier too. 

If you are a health or social care professional recognise that carers can be unsure about what to do. Our decisions ultimately are huge, especially for those of us caring for people who can’t advocate for themselves. We are terrified about making the wrong decision. We second guess ourselves constantly. You will likely get a different opinion from us on different days. We may change our minds. We may be tired and sometimes a bit of an arse. We may be uncontactable and then struggle to call you back. We may forget things- believe me we have more than a few things to remember. We have so many appointments that we can’t be sure what we’ve already told you. We get confused about who’s done or said what to who, and what we said we would do. Meetings can often feel like an exam I haven’t studied for. And unlike my finals I can’t get up and leave half way through to go to the Students Union for a pint...

That’s about it really. 

A word fart blog post and now this “amazing inspirational wonderful brave noble and selfless” human is off to bed, hoping to wake up valued visible and supported.

10 years of SWAN UK- Undiagnosed Children’s Day 2021

For those of you who don’t know SWAN stands for “Syndromes Without A Name”. A community of us, the “outsiders”, living with family members who have an unknown genetic condition. But what is this madness you may well ask, how can people not have a diagnosis? Well truthfully for many families their children present with combinations of symptoms/ clinical diagnoses never seen before. Or they differ to those usually seen. Health professionals need to have an idea about what to test for. 

Nate is almost 11. When he was born we were devastated to hear Drs thought he had a genetic condition, and that it was likely so severe he wouldn’t live very long. We were then a bit confused and frustrated at their admission they didn’t know which condition Nate had. No smart phone around in 2010 and I hung out of the maternity ward windows trying to get signal on my phone to Google genetic stuff or any syndrome even mentioned in passing. On every ward round Drs had noticed something else unusual about my son. We seemed to be playing dysmorphic feature bingo. Which was more than a bit shit. 

The genetics part of my degree certainly didn’t cover this sort of utter bollocks  ( or maybe it did and I was too hungover...). 

The real “lowlight” of those early days was meeting a geneticist and watching them hmmming while inspecting my little baby boy, photographing his “flaws” for discussion with colleagues in an attempt to diagnose him. The relationship did not recover from this initial meeting, which will surprise no one. 

We gathered equipment over that first year and eventually I bonded online with another Mam over the fact our children stop breathing and turn blue, and neither had a diagnosis. Emma, mate, I love you forever. Eventually we discovered that a charity had received funding to begin supporting families of children without a diagnosis. SWAN UK was live online. I think we began as a close knit group of 12 which grew slowly for the first few years before expanding exponentially. For those first years, while the group was small, I would say we knew the ins and outs of every bit of each other’s lives. We despaired at our treatment by professionals, at fob offs and condescension. We supported each other through tragic times. We smiled and laughed with dark humour to keep on swimming. We kept each other going. Or that’s what you all did for me anyway. As SWAN gained momentum the online community grew bigger, and the support provide expanded. We met up with our “swans” at local mini events, and then at larger group ones too. Our children played, the siblings ran wild comfortable with each other. The SWAN mams went through years of legendary 6monthly piss ups in cities around the country ( those were unofficial SWAN meets of course).These women are friends for life. They get it. No one else can truly understand the emotional rollercoaster of living with the unknown. Or that feeling when the geneticist asks if you and your partner are related...

Naturally over time we have drifted apart, our lives are really busy, many of us work, complications increase as our swans or swan graduates get older, and devastatingly many of these beautiful children have passed away.

But I know if I needed them these ladies would be there for me like a shot.

 

SWAN, headed by the wonderful Lauren provided us with a platform to have a say, and to be able to help implement real positive change for the undiagnosed and rare community. I’m not a massive fan of awareness days usually but raising awareness that a HUGE number of children and adults live their lives or part of their lives without a diagnosis is incredibly important. Getting a diagnosis is important but so is ensuring that those working with undiagnosed people know how to do so in a productive joined up way. Not having a diagnosis should NOT hinder getting the care, treatment, or equipment you need. I remember an OT being reluctant to adapt things in our house because Nate might “get better”. Fucksake. 

Ah and the endless questions from everyone from some random woman at a bus stop to a nurse in hospital:

“What’s wrong with him?” 

“What’s his diagnosis?”

“What’s he got?” 

“Can they fix him?”

“Did you know?”

“Can they test for it?”

Now what I always wanted to reply with was “fuck off” but apparently that’s frowned upon. Mind “UM, we don’t know” doesn’t go down much better and is met with incredulous looks. 

Over the years our family has been supported massively by SWAN and while I wasn't working being involved gave me purpose. I’ve acted as a local SWAN rep, I’ve spoken on committees and at events, I’ve written articles and even recorded a session for Radio 4’s the The Listening Project. I’ve had the privilege to meet the most amazing families, and I’ve been listened to. Nate did receive a very rare diagnosis and so we are technically “swan graduates”. Nate is rare even within that small group of boys and men, although the community is fantastic and a wealth of knowledge and experience. This means I rarely dip back into SWAN. The families there are where we were many years ago, and our needs have changed with time. 

I will never ever be able to thank Lauren and the team at SWAN UK enough for their help and support over the years. 

Happy 10th birthday SWAN UK!

https://www.undiagnosed.org.uk/

Also ladies (and you know who you are) we absolutely need a meet :) 

Nate’s feeding journey - original post Jan 2018

Shall I say it? Dare I?  

Nate’s stomach is currently feeling the best it has in years. 

Now this may quite likely be a “good patch” but could it be that after years of pain and frustration we are finally managing, or possibly even treating Nate’s gastro symptoms? *gasp*

Nate’s feeding saga is a long one. Honestly don’t bother reading this unless you have a particular interest in tubies, tubes, or have a child with ATRX. It’s not going to even try to be amusing, sorry. This is more of a brain fart. A garbled attempt to write it all down. So much has happened over the last 8 years that I get confused about timescales and chronological order so there will probably be some inaccuracies. I’ll need to edit, and then edit again as I remember bits and pieces. 

For a long time respiratory problems were Nate’s most pressing concern so although I suspect gut issues were always there, they weren’t the priority in the early days/ years- keeping Nate breathing was. 

At birth Nate didn’t do much at all really. His breathing was utterly rubbish, he couldn’t latch on to breast feed, and he had poor coordination of his suck and swallow when trying to take a bottle. A nasogastric tube was inserted and he needed oxygen via nasal cannula. That’s how we brought him home. Not knowing how long he would live for, or what condition he had, just that it would be something life limiting. We spent months giving formula with gaviscon through his NG tube (no feed pump and a thick consistency meant aching arms) after first trying to get him to take a bottle.  The NG would come out when Nate was doing well but there was a very specific technique required to feed Nate and an awful lot of air swallowing went on. We had variable success with bottle feeding, and Nate only fed from the cheapest brown teated bottles you could find. Nate would feed fine one day and not the next. He would spent a few weeks at home, then a few weeks in hospital, then slightly longer at home, followed by a further admission. All due to respiratory problems. All requiring huge amounts of oxygen and some finger crossing. While at home we attempted to wean Nate on to baby food and puréed meals but each time he was admitted into hospital with a respiratory problem the NG would inevitably go back down. 

As Nate approached his second birthday we made a determined effort to wean Nate from the permanent oxygen he still required during the day. Carrying a CD oxygen cylinder on my back while carrying Nate is definitely on my list of tricky things to do. To ditch the oxygen Nate was required to gain weight consistently and for this to happen the NG tube had to stay. Oxygen weaning was a success and Nate managed to discard the daytime oxygen and continued to persevere with oral feeding. I would spend hours trying to get Nate to finish a meal but he still couldn’t manage to move much food to the back of his mouth and then swallow it. He refused to eat in front of our SaLT, and the video fluoroscopy showed he had a safe but late swallow. Nate continued with his intermittent hospital admissions but began to spend longer at home. Nate displayed some pain during this period but it seemed to have a specific reason for example a urine infection or constipation. 

This inconsistent feeding continued and Nate struggled to maintain any weight he had gained. His doctors seemed quite happy for him to keep a NG tube for top ups and for us to continue to peresevere with oral feeding. I felt we were making little progress, it was like banging my head against a brick wall. Hours and hours were taken up and Nate got to do very little except what felt like force feeding, and if anything Nate was coughing more and more with the NG in situ ( so would you with a plastic tube at the back of your throat). At one point I was reinserting the NG 4-5 times a day as he hated it so much and would pull it out. Nate’s constipation was horrendous causing him to scream for days and he would also vomit large amounts. He had strange episodes with marked colour changes which coincided with oral feeding, and would scream in pain without any clear reason. We began to ask about more permanent solutions to feeding and giving meds. Eventually the drs listened and after a failed PEG ( percutaneous endoscopic gastrostomy) insertion as Nate’s stomach was in the wrong place ( which did explain why the air he swallowed had such a dramatic affect on his breathing) and he had a gastrostomy placed laparoscopicly just before his 3rd birthday. It’s shouldn’t be any surprise after reading the above to find that Nate’s chesty problems diminished once oral feeding was reduced... 

Initially Nate had a long Monarch gastrostomy tube. It wasn’t fixed in place (as most gastrostomy tubes are) by a ballon or disk as the plan was to swop it for a gastrostomy button as soon as possible ( once the stoma had healed).  Unfortunately I accidentally trapped said gtube in Nate’s pushchair when lifting him and so brought forward the insertion of a gastrostomy button by a month or so...

 #epicparentingfail

The resulting gastrostomy button was neat and tidy, and easy to replace if it broke or blocked and I was happy to change Nate’s. 

Nate continued with formula feeds with some small amounts of food eaten orally on occasion, however one negative effect of the gastrostomy was an increase in his reflux. He was sick more and more and travelling anywhere in the car was a nightmare. He would have better spells where he was less vomity but we couldn’t work out why. Absolutely demented with the amount of vomit regardless of which feed we used I decided to try Nate with real food through his gastrostomy. At this point we had just received Nate’s diagnosis of ATRX syndrome ( aged 3 1/2) and with aspiration pneumonia being one of the most common causes of death within affected individuals we were understandably committed to finding a solution. 

At that time using a blended diet (BD) wasn’t well supported or even approved of really but we went ahead with it. I’m perfectly capable of identifying and minimising risks, and the possible benefits certainly outweighed any. I will confess I fell into the trap of massively overthinking the change over to BD. I agonised over calories and balancing out his diet. I stressed about how to wean off formula and introduce food but the more I thought about it the more it made sense. So after playing around with BD and formula for a few weeks we went straight over to 3 meals a day. The results were overwhelmingly positive. Nate’s reflux settled and he gained weight. The constipation vanished and he had a good year or so. We were still seeing pain and vomiting although these episodes were separated by long episodes of, well, being ok. My thoughts are that these episodes had always been there to some degree but were masked by reflux and intolerance to formula feeds. 

After a referral to gastro they recommended a low FODMAPS diet which made little difference to Nate’s symptoms and led to a large weight loss. Intolerance tests came back negative and an endoscopy showed his reflux was well managed so neither were the issue. Nate was passed on to another gastroenterologist as his episodes of pain and vomiting seemed to be of a cyclical nature and were worsening. He would scream inconsolably for 3 or 4 days followed by being unable to move anything along his gut. Food would sit in his stomach as he filled with gas and would need frequent venting of his gtube -  -without this Nate would be sick. There would be a struggle to manage symptoms for a week or more and then all of a sudden problems would stop and things would go back to normal. This cycle was usually monthly but it began to change, happening much more frequently and Nate would only have a week or so where he was comfortable before the whole thing would start again. 

Two years ago Nate has a trans gastric jejunostomy button  inserted through his existing gastrostomy site. The plan was to stop feeds to his stomach during these episodes of pain and where Nate didn’t tolerate his food. We were to use the jejunostomy port for feed or dioralyte and have a top up jej feed at night when well. Using the jej for feed allowed the gastro port to be on free drainage which would help drain gas and sicky stomach secretions. Yes it’s as lovely as it sounds. This gave us a means to manage Nate at home and not worry about dehydration or weight loss, however extreme pain was still an issue and he ended up with a oramorph prescription.  Gastroparesis, abdominal migraine and cyclical vomiting were all possible causes for the symptoms Nate had been displaying for years but as there is so much overlap between these conditions it’s hard to know which is the actual culprit.  

Over that first year with the GJ Nate spent more time on a continuous jej feed than off it and his weight plateaued. Continuous feeds are quite restrictive and my son likes to play with his tubes, tangling and detaching, covering himself in milk. My ideal scenario is having Nate on a jej feed for the shortest time possible. His doctors didn’t want to try certain drugs as they interacted with already established meds and although an antisickness med was introduced they held back on the harder stuff. The general feeling was that Nate’s gut was deteriorating and that he would probably need to be kept on a jej feed at all times, although at his worst even jej feeds weren’t tolerated, and an eventual need for TPN was a possibility. This concerned me greatly. We were incredibly frustrated at the lack of creative thinking by health and at one point Nate was referred to a palliative care team at another hospital in a bid to manage his “difficult symptoms”.  I ended up attending an appointment and suggesting antibiotics and going dairy and gluten free ( even though he didn’t have a proven intolerance or allergy) in an attempt to change something. To try something. Nate was miserable, as were we. 

Things got a little bit better with the metronidazole and  change in diet- he had a better “patch”.  Not great, but more manageable. We then had a spell where Nate would aspirate an impressive amount of blood from his stomach. Sometimes dark brown sometimes bright red. Gastro weren’t particularly helpful, and during this time we didn’t have a named gastroenterologist managing Nate. Alongside these issues Nate was having odd tonic not breathing episodes and his usual breathing problems. Also in the never ending crap-fest that is his syndrome were manic episodes where he would go without sleep for days, jerk about and sweat profusely while being awake but glassy eyed and unresponsive to us. These problems were getting worse and Nate’s neuro prescribed Risperidone to see if it would help. At the time he stated that another potential benefit which had been noted anecdotally was that this drug could have a positive impact on Nate’s gastro issues...

AND IT HAS!!!!! 

It’s been three months now since the last gastro episode ( not including a stomach bug).

 *edit 13/06/18 - 5 months no gastro episode* 

*edit 13/02/20 - a couple of very minor blips but no major episodes*

So that’s where we are at the minute. Two blended meals during the day and a jej top up at night. I even had a conversation with Nate’s dietician a few weeks ago about dropping the overnight feed and reintroducing breakfast. I suspect Nate’s cyclical issues are still there simmering under the surface, he will have an odd cry out at times, but they are clearly not what they were. I am conscious that this may be a simply a ridiculously good good patch. But fuck it we will take whatever we can get. 

( Red mark on Nate’s forehead is from his overnight mask he hasn't bashed himself) 

 

BIG NEWS!

**Edit 20.8.20 Nate has had his trans gastric jejunostomy removed and now has a spangly new gastrostomy button** 

AMAZING!!!!

It’s relatively unheard of to move back to a gastrostomy button from a GJ as in general gastro issues are progressive. This may just be a good spell, but we are rolling with it, especially considering his tonic episodes are shocking at the minute.  Nate’s GJ has been on its way out for a while- the white disk kept falling out and the gastro port wasn't draining easily. Then the balloon burst which holds it in place. The agreement with gastro was that should it totally break the community nurses could remove it and put a standard gastrostomy button in. They came this morning but were unable to pull it out. After much pulling I was instructed to take Nate to A and E so that it could be removed in a safe environment in case anything went wrong. After waiting an hour in our local hospital’s A and E I was told I had come to the wrong one 🤦🏼‍♀️ and had to go to the other hospital that deals with Nate’s care. Suffice it to say I was not best pleased. At our other hospital a lovely young nurse lubed the tube and it came straight out with no pulling at all. 

So to quote Orlando Jones in the 00s film Evolution, 

 “There’s always time for lubricant”

Happy new year! I think?

So it appears that we are still in this COVID mess and locked down yet again. At least I think we are, it’s hard to tell when it’s still so busy in “the outside”. But that’s ok because it’s all going REALLY WELL. I mean yeah over a thousand deaths a day sounds pretty bad, and our NHS is overwhelmed but the government is on it. Right on it. Right there making the hard decisions in a timely manner, apart from when they're not, which is most of the time. 

So what’s been happening with us? Well after a long period where Nate was having a multitude of tonic events at night which were becoming increasingly difficult to deal with, he was started on clobazam.  We persevered as we increased the dose but it just zonked him out to be honest. It didn’t seem to have much effect ( if any) on the "no air entry" events while sleeping and so we weaned him off in November. It was once weaned that a really good run began. And I mean REALLY good. He wasn't even having the typical apnoeas he's had since he was a baby. Although he did begin to have seizures during the day, but he does breathe during those ones so, you know, cling to the positives. This combined with the fact everyone he comes into contact with is masked has resulted in the healthiest Natie he’s ever been at Christmas. So while it was the oddest Christmas we’ve had ( chilly garden visits) it wasn’t as horrendous as it could have been. 

I’ve realised I don’t think I’ve shown Nate’s new room. It’s Avengers themed! He particular loves his funky lights. All done by Michael and his dad. There was some assistance by Thea, but judging by the yelling I suspect this was minimal. The final addition completing Nate's room is H track hoisting which is going in as I type. 

And now? Well not much has changed. We’ve cancelled all face to face appointments but as a family we are still going to work and school ( see http://theaandnatesmam.blogspot.com/2020/07/end-of-summer-term-at-least-i-think-it.html?m=1 which covers why we made that decision).

My daughter is very happy to be in her school building with a few friends doing online learning, and her brother is benefiting from his usual access to therapy and resources which he missed out on March- July. As a family with reduced access to the big outside world this isn’t very different to how we’ve lived for many years. Especially with no respite. With Nate, his equipment, and his variable health, we’ve always had to think very carefully before venturing out and about, and more often than not stayed home. We did a carers assessment the other week which was really fucking depressing. Michael naffed off on a “work call” half way through which was suspiciously convenient. We both realised that without a shit load of planning we don’t get to do much at all as a couple, or with our daughter. And even then it’s unlikely to be able to be arranged. We had to call in a lot of favours just to be able to attend family funerals. How wrong is that. So yeah, lockdown, not that different for us. Although I would murder a pint. 

The longer this situation goes on the more everyones mental health suffers. I’m feeling it in particular at the minute as I don’t think I was exactly top notch pre COVID. Throw a global pandemic at us carers and watch the slow build of anxiety and depression as we absorb the national situation with fun additional worries such as how long will an ambulance take if we need one? I tried to explain all of this to the GP I spoke to last week and I don’t think she grasped the utter shittiness of the carer situation. Can you request to have “donkey on the edge” written on your notes? It would give them a bit a prior warning of what to expect. I think I confused her with my nervous laugh while trying to explain that Nate's good run of 8 weeks of no bloody scary night time events just means I am waiting for something pretty spectacular to occur, and not in a good way. Needless to say the good run is over and I’m now feeling less anxious. Which probably doesn’t make a great deal of sense to anyone but me...

I truly wouldn’t like to unpick what’s going on inside my head. 

After months and months of utter fury at the TV and social media. At those "governing” us, the maskless wankers, the anti vaxxers, and the COVID data deniers, I had started to feel like the end of this whole fucking shit show was in sight but then you throw the inevitable new virus variants into the mix. Let's hope we get vaccinated before the virus mutates in a way which means the vaccine needs a tweak. Nate doesn’t qualify for a jab as he is only 10, but I did see good news in that parent carers are now in group 6 for the vaccine so we should get it fairly soon (or at some point anyway). I’m now less worried about the kids becoming infected and more concerned about who the very fuck will look after Nate if me and Michael are ill at the same time. Catastrophe. I suppose they would have to admit him to a paeds ward. Not that this has been discussed. But no one would know what to do with him. There’s been no discussion or planning. I feel like I need a plan.

Why haven’t I got a plan? 

FUCKSAKE

Yes a ward could deal with the big issues when they arose but they wouldn’t have a clue about all of those smaller signs we spot or routines we do to keep him safe. Fuck. I mean to some extent we’ve always lived like this. Parent carers aren’t allowed to get ill, especially not seriously. We do not have the time for it and I say this only half in jest. 

Thea is having her first lateral flow test at school today. That will be a delight for those involved I'm sure. Good luck to them.. I've no idea how testing will work in large school settings, and I expect in many it simply won't. I volunteered to help out with them at my workplace but there aren't many schools with the space, staffing and nursing to ensure they are done well. In an ideal world I don't think COVID testing should be added to the already long list of school staff tasks by this inept government. A government who are so far detached from the reality of schooling that they may as well of tasked us with wrangling sheep when they deposited thousands of testing kits on the first day of term. But anything that gives us back a little bit of control, and some reassurance despite its inaccuracies, is worth taking part in in some capacity. 

I am continuously shocked by how many people are still not listening to guidance. I know everyone is fed up but we still need to do our bit and make sensible choices to keep everyone safe. I don't give a shit if you think COVID won't make you ill- its making others ill, hospitals are struggling - good luck getting that ICU bed when you have an accident.

If you are of the opinion "nothing's going to stop me seeing by family and friends" stop being an absolute weapon, and you know what- never has that little bit of slang been so appropriate. You can infect others, do you want deaths on your conscience? Even selfish dickheads care about their relatives...surely?

You don't want to be vaccinated? That's your choice but stop sharing utter wanky lies you've seen on social media. How about a fact check. 

Anyway here's a Fred pic to end on a happier note.