I apologise for the lack of blogs recently...but we've been having a busy old time with Sam and his condition.
I realise that I haven't brought you fully up to date yet (that will follow).....but here's what's been going on recently...
Sam had been coping really well and been healthy and relapse free for a while.
He'd been prescribed a low-dose Ciclosporin (an anti-rejection drug ?....but seems to work well with NS cases like Sam's)
After many regular blood tests and changes in the dose to get the correct levels for his body, we rested on a 0.45ml dose twice a day.
Although not without it's side effects and complications, Ciclosporin was more favourable then steroid as a long-term solution to hopefully reducing or stopping Sam relapses.
Looking back now...this drug (and dose) worked really well for Sam and although he had to attend hospital regularly for blood tests and check-ups...we had no admittances due to relapse, infection or illness for 2 whole years!
We were all so relieved and really, really pleased for him!
Life returned to relative normality with Sam becoming a healthy, happy child and resuming a normal diet etc. Also, his behaviour and mood-swings improved due to him having a longer period off the steroid treatment. He was doing really well at primary school now (academically and socially!) and was settled into his routines and making friends.
So, after 2 clear years and Sam being as healthy as he was, it was decided to start a wean off the ciclosporin.
It is common for everday illnesses (ie colds etc) to trigger a relapse in a sensitive case, so, to give him the best chance of remaining relapse free, we started the wean after the winter months in Feb 2012.
It was to be a very slow wean to allow Sam the best chance of success.
So, on 1st Feb we reduced the dose by 0.05ml and were to remain on this dose for a further 2 months before the next drop.
After 3 weeks, Sam relapsed.
His protein check shot straight up to 4+ (this is a scale ranging from negative or trace, 1+ upto 4+ and beyond to show how much protein is leaked into the urine - tested with a dipstick)
As you can imagine...we were devastated!
So, for the first time in over 2 years, Sam was back on high-dose steroid.
Well.....that was a shock to the system I can tell you! I wouldn't have believed how much we'd forget and how much it changed Sam! After only a couple of days back on the Prednisolone (and penicillin - to combat any infection) Sam was a totally different child! His whole behaviour changed causing issues at school with his massive mood-swings. His struggling to concentrate and inability (yes! I'm positive it is inability!) to listen! He would be off in his own world for hours and nothing you said would get through to him at all! So, in times of major tantrum...you can imagine the scene! The only way to get through to him...was to stay calm, hold him and wait for his focus to come to you. Once he was focussed...it was easy! He'd listen, understand and collapse in an exhausted heap of tears! Then we'd be left with a very fragile, sensitive Sam...that needed lots of time, attention and comfort! It was heart-breaking to see him like this (again) and extremely wearing on the whole family! His siblings having to re-adjust just as much as Me and Gra.We'd all have to learn (or re-learn) a whole new way of treating Sam. Avoiding situations, reacting to different moods and then dealing with the aftermath!!
Medically, Sam did well and was back in remission after 11 days on the steroid. This is the point that he stopped leaking protein.
Daily urine tests with his dipsticks show the level reducing over time and upon the 3rd day of a negative or trace reading - this is called remission.
At this point reduced the dose of steroid slightly and he took it only on alternate days. A kind of quick blast of high dose medication to stop the relapse...and then a quick wean. This continued for 4 weeks before stopping the steroid completely.
During this relapse, we were given options for the way ahead!
1 - see it as a "blip" and continue with weaning the ciclosporin (the only risk being a further relapse on completing his steroid dose)
2 - increase the ciclosporin back to the original level. (this would mean Sam undergoing a 2nd biopsy to check the kidney's health)
3 - stopping it all and looking into something completely different.
We decided together that we would go with option 1.
Given that Sam did so well for so long on ciclosporin before, we didn't like the idea of option 3. And if we could avoid the biopsy (for now at least) we would take the risk of another relapse.
So, 7th April 2012, Sam was back to only taking the lowered dose of ciclosporin. We continued to check his urine daily....just to be sure and he had check-ups at the hospital.
We were so pleased that he seemed to be doing really well and holding off another relapse (even on the lower dose of ciclosporin!!)
THEN...after 4 more weeks.....he caught a cold!!
By day 2 of his cold, his distick showed 4+ again! And again we were devastated!
The Doctors hoped that again it was a "blip" and that once Sam got over his cold, his protein loss would return to normal.
So, we were advised to hold off with the steroid treatment and were then giving daily updates to the hospital on his dipstick reading and his health.
Over the next week Sam was quite happy. He was getting over his cold well and seemed healthy enough (apart from remaining on his 4+ readings). By the next week (21st May), we noticed little changes. He was becoming more tired and frustrated with things.
A check-up on monday didn't show anything significant. He seemed well enough...but still had a cough left over from his cold and was just tired. He didn't look to be retaining much fluid at this point, so we continued to ride it out and stay off the steroids, though Sam did start a course of penicillin to fight away the cough.
Tuesday brought a disturbed night, with Sam's cough the worst it had been and he was awake and coughing for quite a few hours. We kept him off school to rest on Wednesday and he seemed fine all day and slept well that night.
We were still phoning the hospital each day with updates...but as nothing much had changed there were no further developments.
On Thursday (back to school), we noticed that Sam was starting to look a little puffy over the bridge of his nose. (On past days this had subsided over the day...but it seemed more prominent now). By lunch-time he'd gone downhill and seemed quite unwell at school and was sent home. Back home and resting...Sam perked up a little, so instead of visiting, we phoned the hospital.
Now, we were advised to start the steroid treatment! Same as before in terms of dose and period.
So, now we're almost upto date!
We gave the first dose of steroid on Friday.
Sam has been getting more moody and has been complaining of tummy pains all weekend...and getting worse! On inspecting him last night he seemed to be quite puffy facially and had a much larger belly than normal. Worried by his crying and writhing (not normal for Sam!)..I phoned the hospital and made a late night visit to get him checked out! And although all his bits were ok, ie - no infections or worrying problems....he had gained 1.7 kg in weight since being weighed at check-up on Monday! That's 6 days! Most definitely all fluid...and all around his tummy area, legs and face! Definitely glad that I got him looked at! :)
So.....today...we're relaxing together....watching dvd's......and waiting for the hospital to phone with news of the next bit of the challenge! Most probably moving onto option 2 and another biopsy ?? but...better not to think of all that until we get there I suspect!
My cuddle awaits...so until next time
Take Care :)
Sonja xx
