new year

So, not much changed, the meds worked and Aaron improved but declined again as soon as they were finished, so they decided to put him back on them so we picked up another batch just before Christmas and again they did the trick, so at his first infusion of the year they decided to keep him on them for another month totalling 6 weeks. We have just stopped again and are holding our breath to see what happens next. Its nice to have a break from the making it all up from vials with needles, administering it 4 times a day and the endless tooth brushing as it stains his teeth 10 times more yellow than a month of not brushing at all! His infusion is in 10days , still at the reduced 6 weekly interval, so we are all hoping this keeps things ok.
Here are some slightly late seasonal snaps!

Christingle service

Emma Bunton at GOS party

Steven Mulhern at GOS party

wettest Christmas outing ever! 

getting dry again

@GOS for infusion day

Flare

another London trip

So unfortunately Aaron's symptoms did not settle down and increased too. He is now having several motion a day all with blood. He had an early infusion at a 6 rather than 8 week gap, this sadly did not have any effect, they do hope another infusion, again in 6 weeks might still help, i'm not convinced...
However, in the meantime, since his calprotectin level (stool inflammation marker) has shot up, confirming his flare, his GI has agreed to try an antibiotic as due to the previous positive effect. It is the one that is a pain as he takes it as a liquid so it has to be drawn up from injection vials but can be taken orally. Due to its slightly off-label usage, we had to collect from London rather than locally, which meant that was how Tom spent his day off, rather than helping me finalise the school Christmas fair I had been organising for that day.

our house before the fair

It has been a very tiring and stressful patch, with also, last weekend, Aaron's party to plan and a trip to Oxford for a Crohns information day.

Aaron is 8

Children in Need mad hair day 

New school year

So Aaron is now a Junior, in year 3, Josh is in his final year of Primary school and Ethan is in his his GCSE options year!
This half term has been extremely busy, in fact this tab has been open for weeks waiting for me to have time to update things! There seems to be constant demands on our time every week, having us running between commitments (like PGL camp, school trips, sleepover at school, meetings, events I organise etc etc!)

plus its been a busy half term of medical appointments too;
Ethan has started orthodontic treatment with a temporary brace expander only so far. He also had a nasty sinus infection which spread to his eye, leaving him sitting in the dark in pain until we managed to get antibiotics, and totalled a week off school.

Josh is still off his medications, but he is quite unsettled tummy wise, so we will see how he gets on, we may well need to go back onto something.


Aaron has had several appointments, most of which are in London so take up several hours, one was a shared one with Josh. He has also had a colonoscopy due to increased symptoms earlier this year, which had settled, it was also a year since starting the Vedo so they like to look and see how it is working. It was a busy few days of laxative clear out and anaesthetics etc, but results were good, still showing very obvious Crohns but no active inflammation, which was what we were hoping as since June the symptoms had settled again. However since then, in the last few weeks, he has started to have diarrhea and bleeding again, this has not been stopped by the infusion so we are watching and waiting and hoping before making any plans, as it is still mild so far. He has also, as mentioned, had medication infusion days.

We have really kicked back and tried to relax this half term whilst having fun,

the period of all the boys birthdays plus Christmas have just started with Josh's party last Friday and actual birthday tomorrow.

Doing well

GOS new play area

prize

movie and infusion

still reacting to numbing cream 

After a worrying time from March til early June where Aaron's Crohns' symptoms returned, things actually settled down again rather than spiralled down as they had in the past. Curiously this improvement coincided with some antibiotics for a chest infection. He was booked in for a colonoscopy as it was also a year since he started the new medication (last Easter). However the date for that came through for early July by which time he was doing a lot better and it also clashed with the date he was to spend the day in his new class so we deferred to late August (earliest possible). When i called up to confirm the day before, it had not been put in their diary, so is now booked for 11-12th September which is a shame as he will now miss around 3 days of term, and it has a knock on effect on a couple of his other appointments, and also Josh's. So frustrating!! He is still having a few ups and downs so it will be good to finally get this done.
Josh has had a better year, we are pretty certain now of his food intolerances and have had no success in introducing even small amounts, in fact he had an allergist appointment which showed his egg reaction is now classed as a true allergy. However he has, in the past couple of weeks, managed to come off his medication (for now) with only minimal symptoms!
Ethan has started orthodontic treatment, and is a bit short sighted so may need glasses, but is otherwise healthy.
For the rest of the year's highlights

Legoland

baby cousin Hugh

new pet?

Hever Castle

Josh flag bearer at Chelsea

Ethan high ropes at Hobbledown

Canal trip with the Boyles

Mayfield lavender

Aarons first Beavers camp/sleepover

Holiday in Turkey

slides

beach

wedding

pool with cousins

All Good

So the Vedolizumab seems to be both soothing Aaron's symptoms and lasting the 8 week between infusions. This dose there also does not appear to have been any potential side effects either! He is suffering from some queasiness which they are treating as for heartburn/reflux and his stool inflammation marker whilst down from 5000 to 500 is not the 50 that is normal.

world book day apt costume!

Josh's appointment at GOS' new allergy clinic had to be postponed due to the snow though

New Year 2018

fundraiser

So Aaron is still doing very well on the vedolizumab, he seems to last the 8 weeks between infusions with only minimal symptoms returning by week 7. Being well allowed us to enjoy a nice Christmas, as it was as busy as ever with all the birthdays, prep, school events etc but at least no illness and emergency hospital visits to add in.

Aarons pizza party

Santa Canal boat trip

Christmas

Great Ormond Street party

meeting Mr Poppy

He does always seem to get after effects post infusion, we are never sure if its 'just a bug' and unrelated but it seems to be quite conincidental. He gets pre-meds before each infusion to cover this possibility; steroid and antihistmaine. This time he had extreme sickness, 10 hours of vomiting on average every 20-30mins, we ended up in A&E for rehydration but it has started to settle not long after we arrived anyway.

poorly

We have also had a joint appointment for the boys to fit in plus a Winnie the Pooh exhibition after, so a busy-ish start to the year, but not the busiest year by far!

V&A Winnie The Pooh exhibition

ups and downs

 

Mostly ups to start with! After about 3 days of the 2 week course of the fiddly antibiotics he made a huge improvement for the whole summer, until about October, give or take the odd off day.

Devon

Back to school

Since then he's been ok but stools looser, some diarrhea and more worryingly some blood. 3 weeks before his due infusion they decided to bring him in and check bloods and stools etc for reinfection. These were ok for infection and too early for telling if he was flaring again. We were kind of hoping for reinfection as the treatment worked so well! He is better again than he was as in not bleeding but not as good as over the summer, its hard to tell if the new infusion is working or if it was the antibiotics and follow up prebiotics. This week he had another infusion leaving him feeling very stomach achey and diarrhea, there they also heard a soft heart murmur which they will keep an eye on esp before any anaesthetic.

look who we saw on the way to hospital!

pre-infusion play, still its in the cars - just!

infusion time

post infusion washed out and stomach pain

He also has mouth ulcers, sore feet and slightly red eyes at the moment which is a sign of him being a bit 'off' and starting to flare.

He has also had a few potential reactions to the vedolizumab or just coincidences, resulting in him receiving premedication of steroid /antihistamine mix IV before the infusions. Mostly stomach pain, vomiting and hives.

He also (totally unrelated to crohns) had me needing to pick him up from school after hitting his head at break time, requiring gluing.

We were very fortunate to be able to go on a Crohns Colitis UK camp weekend, where all meals were provided plus 2 volunteers just for our family allowing us to have a busy activity weekend with enough help for toilet trips! and not be too exhausted at the end of it #overthewall