Sadly I'm going to start this post with an apology...
Firstly, for not keeping up to date with things - I haven't posted in ages :( - many reasons, but I guess that as Sam has been well for a while, it has just slipped my mind. It's going to be an epic :o
And secondly, I really wanted it to help educate those who know Sam and for his friends and family to see the progress he was making with his condition....but really wanted to share the good times as well as the bad - and I am failing!
The prompt to post today came after a pretty stressful few weeks (now settling a little) and a tough day. And as I sat in tears bathing him and really noticing how his body had changed over the last couple of weeks, I realised that although improving....we were still a way away from him being back to the Sam we had just last month.
I will recap, just a little, to share what a good journey we have had over the last couple of years since I last posted.
A while ago now, Sam started a course of a secondary drug called MMF (I will expand that later once I have all his medical notes with me....but for now MMF will suffice) - it basically is designed to keep Sam's body at a stable level for him to be as healthy as possible in terms of his condition. Ideally it will reduce the number of relapses Sam will have, if not stop them completely. This in turn avoids the need for him to take steroid treatment to "fix" his body during relapse. (Steroids being the bigger evil in terms of side effects etc)
Not without it's own side effects, MMF has a few, but on the whole this seemed like a good route to try for Sam at that time.
For a while Sam was taking both secondary drugs, MMF and ciclosporin, (which hopefully I've mentioned on an earlier blog) and then followed a long period of many, many hospital visits and blood tests to get levels of each drug correct for his body. Which of course we finally found success and Sam was stable for a good while.
Sam's consultants were so pleased with his stability that after a while we were able to remove the ciclosporin from his daily routine and things went well for a long time.
Other than needing to add a daily high dose vitamin D supplement, due to the fact Sam had to avoid exposure to the sun (a side effect of the MMF which makes you more susceptible to skin cancer), we seemed to have the simplest drug regime we'd had since we'd had the diagnosis at 2 years old :)
Things continued to go really well for Sam. Less hospital visits, less blood tests and although a fair few illnesses, in the main these were minor and Sam's body coped well with fighting them off.
If I could take a moment to just expand on that last statement though.
Sam's average annual attendance at school was pretty constant over those last few years and was still only around 65%. So, although we say he had a good spell.....it was not without illness, extreme tiredness, avoidance of outbreaks in school etc!
As you can imagine this put added pressure on us at home to attempt to keep him on track and catch up with as much schoolwork as we could....and I'm happy to say that as of last year, he was still performing at a good standard for his age :)
This brings us almost upto date.
Looking back now that we are mid-relapse, I guess I should have seen all the signs .....but you know that this is only the bonus of hindsight!
So, things started to go a little wrong at the start of this school year - a most important one for Sam as it is his last year at primary school, SATs looming, applications to secondary schools, lots of change for us all.
Sam struggled at the beginning of term and could barely make it into school for a full week without
becoming unwell....or totally exhausted. We combatted this for a few weeks by agreeing with the school to allow Sam to attend for just half days only...and this worked well.
Our last meeting with Sam's consultants went smoothly as has been the case for the last few meetings. Nothing to report, no changes, all well :)
But I do remember some mention of the dose of MMF that Sam was having.
As he had grown a bit, we really ought to have increased the dose slightly....but he'd been stable for such a good length of time and the tablets only come in certain fixed dosages (which of course Sam was in between) so it made sense not to alter this for the time being.
So, on the 1st of March 2017 Sam caught yet another cold....he'd had many over the past 3 years and coped...so we didn't really think anything of it.
He felt under the weather for 2 days and then seemed to recover, being up and about and eating better
than the last couple of days.
The next day (Saturday 4th March) he woke up looking and feeling awful and went downhill quickly. His temperature zoomed up to just over 40 and he quickly stopped eating and drinking.
We were used to the signs and knew that this was the point to call the hospital (we have open access). He was instantly admitted and all the usual tests taken to assess what was happening in his body -bloods, flu swab, throat swab and plenty of paracetamol given.
Sam spent the next 48 hours in and out of sleep and struggling to keep his temperature down, in fact even with medication, he took an hour and a half to respond....and even then it only reduced to around 38.
The Dr's guessed that given Sam's description (sore throat) that it was likely to be a secondary infection of the throat (tonsilitis to everyone else) and IV antibiotics were started straight away. This tends to be the standard treatment when Sam is admitted like this. His body just cannot deal with fighting off any kind of infection...so needs this as an extra boost.
By Sunday, Sam was also put on a drip to ensure that his liquid intake was kept up to help his kidneys avoid more damage. They are already weakened and scarred and putting extra pressure on them (by not drinking etc) can only be making things harder for him and making him feel worse.
By this point Sam was not eating, not drinking, not weeing (obviously) and being sick fairly regularly! Probably a reaction to all the medication in his empty tummy and his raging temperature :(
We managed to make a breakthrough with the temperature by Monday (midday) ...clearly the IV antibiotic was starting to kick in now a little :)
Sadly though, Sam's only wee so far whilst in hospital had tested 3+ for protein.....the main test for his condition and a sign that we may be heading for a relapse. - When feeling unwell, it is wise to 'dip' Sam's wee each morning to test for signs of relapse. A lovely yellow stick is all clear.....but a green is not! And the darker the green....the worse the news :(
We came home finally on Monday evening after a third dose of IV antibiotic (with another 4 days of oral antibiotic) and another wee.....again 3+ :( ....now we were beginning to worry!
Now along with the usual meds we had to try and get this oral antibiotic down Sam......and being unique as he is.....flavoured (kids) meds are not compatible with him....and this proved a difficult task....meaning a constant sick bowl at the ready :(
Still very weak, but clearly on the mend, somewhat...we were very pleased to be home together.
For the next few mornings we were careful to 'dip' Sam's first wee of the day (although we were pretty sure which way things were going by now! Especially as he wasn't really weeing much at all.....another sure sign :( ) As we expected....all 3/4+ now. Definitely a full relapse.
The next day we were back at the hospital having extra tests (kidney function, white cell count, weight and blood pressure etc and collecting relapse medication.....a
course of steroids and an oral antibiotic to cover any potential infection caused by the fluid that Sam
was now starting to retain (the wee that he should be getting rid of....but was now leaking out and into cavities inside his body)
Apart from feeling very unwell from his original infection (now confirmed as strep A (bacterial infection of the tonsils)) poor Sam now had to contend with a multitude of meds (that he'd not needed or taken for about 3 years) and a full relapse too.
I've ended up rambling on and on about every aspect of this....but think that at the moment, this is important as many people ...even some of those very close to us, just really don't understand what Sam goes through :(. Most of the time, and the Sam that most people see out and about is a cheeky, happy, outgoing child....always smiling...and looks totally "normal" and fine. Even during this period, we've had the most gorgeous moments with Sam cracking jokes, bossing the nurses around and beautiful smiles! Yet we also have lots of moments where he is screaming as the IV meds go in and sting, retching or being sick as the oral meds go in, crying because he can't take any more, rolling
around in pain as his tummy hurts with the fluid inside and because of his now over-stretched skin and constant bloated feeling and misery of why this is happening to him :(
As I type now, Sam and I are snuggled together on the sofa (having spent another night there) after we dozed off in the evening, cuddling.....anything for a good sleep and being close to keep an eye on him. Although last nights' trial was a different one entirely.
He has now been taking the steroids for 10 days. It's taken a little longer than other relapses (but we have had worse too!) but finally today we have our first yellow stick!! :D
Testing negative for protein is the start of our speedy jump back to remission! 2 more dips (days) like that and Sam will be classed as in remission......but will still need to finish his course of steroid. This we will start reducing gradually over a 4 week period.
Steroids cause all sorts of chaos inside the body. It's amazing that they can jolt Sam's body back into relative normality...but at the same time they severely affect his behaviour too. And yesterday was
the first day that we have received the full-force of a steroid Sam.
Tantrums over silly things, from ultra happy to absolute devastation in 10seconds, anger beyond comprehension! It's been such a long time that even 'Dad' has forgotten how it can be. Sam knows and can understand for brief moments....but then the blanket will annoy him, or a noise or something you say and he just totally loses the plot :(
It's very difficult to explain unless you've experienced it first hand and really difficult for 'outsiders' to understand at all. They used to see a small toddler having a tantrum in a shop and instantly judge the mother who just sat and cuddled him (without reprimand)....dreading this situation with an ever growing 11year old!
In the home we can deal just fine....but once fully in remission and the fluid drains and we have to make some kind of return to reality, imagine these situations at school - he's treated like a naughty child obviously - lashing out, answering back, shouting and screaming in anger....all traits that you would tell your child off for.....but he genuinely cannot control these outbursts.
In the past (when we've had long steroid treatment periods) Sam would also harm himself ...whacking his head on the nearest hard object, scratching or punching himself...another dread for me...is this coming again...and if so, when? (Soon !!)
My only hope is that he can focus enough during these periods to remember that a firm, strong cuddle from me does the trick. As it did last night. (His game and chicken nuggets sent him over the edge!) - not sure what happens at school yet though, when he's without that option!
So, as you can now see and understand a little more, this whole situation has caused so many emotions for us all. Even in near remission, we still have the stress and trials of coping with the effects of the medication that 'fixes' him - briefly. Once the steroid course is over and Sam gradually returns to the child we know he is - imagine the constant worry of that next cold...or even just that being off the steroid might cause him to relapse again instantly. I would say it never ends.....but we
did become somewhat complacent over the 3 great years we've just had. I guess we have to be grateful for what we've had so far.
I will try and keep posting....regular.....and much smaller posts from now on :o I do apologise for the length of this....and hope you've managed to make your way this far!? - especially for those of you who have been anywhere near me recently....where I may have been a little unpredictable. The guilt of leaving my kids is ever evident.....but when they are also going through all of this, you can hopefully understand my sadness.....a phone call with a very sad, crying, in pain Sam was just too much to stand :(.
I know everyone has things going on in their lives and that it is no excuse and should not affect other relationships....I can promise that I do not crack often (in public, anyway!)
If you would like to ask any questions...or hear anything else in more detail, please leave your
comments on here, or look me up on Facebook. I also have a dedicated Facebook page for Sam too ...look up " Nephrotic Syndrome and Sam" or give me a shout and I can add you. Here I post a few photos of our adventures! ;)
Thanks so much for reading and following Sam's progress with this horrible condition.
Much love to all and happy yellow dips
Xxx
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