more medicines...

couple of fun birthday photos!

So, yesterday we had our long awaited referral appointment at Great Ormond Street for Aaron. He was very excited to be going especially as it involved a train trip with Mummy and Daddy on his own, we were less excited and more nervous which only increased going into the appointment to be faced with 4 Drs!

The consultant was very thorough and had answered most my questions and asked about most of what i had on my list to tell her about, she spoke very fast and covered a lot of ground, so we are still sifting through it all now. She said they treat it more aggressively than they have been doing especially with the high inflammatory marker from the last set of tests. So...

• they are going to start him on a course of steroids for 6 weeks to bring down the inflammation and 'bridge' the gap whilst the new medicine starts to work. 
• She is also starting him on Azathioprine http://www.patient.co.uk/medicine/azathioprine-imuran which is an immunosupressant (used in high doses for transplants) for this he will need weekly blood tests initially to check it is effective but also that it is not TOO effective as in no immune system, and he will have to be careful around people with virus' etc. He also needs urine tests for sugars etc. 
• He will stay on the current medicines - sulfasalazine, omeprazole, neocate formula and folic acid (when we get the prescription!) and if his iron is still low he would have that done by iv so its gentler on his stomach. 
• Diet wise he will stay the same although long term we will reintroduce many of these foods and see, but first they'd like the get the inflammation under control. 

She hopes all this will also help the extra symptoms she thinks he has - aching joints, puffy eyes/red and the somewhat loose poos, but most importantly get the inflammation in his bowel under control before it causes too much damage.

tired boy after a busy day!

Also eventually he will need some sort of small bowel imaging to see exactly what is going on in the area the scope did not reach, perhaps an MRI or maybe a pill-cam capsule. He definately does need to get the flu vaccine all 2-3 yrs are being offered now but not the live nicer spray, the injection! We are enrolled in their research project which involved all 3 of us giving blood samples and perhaps at a later date Ethan and Josh too, Tom had to give the most to act as a 'control' for one of Aaron's tests. They were of course interested in Josh's history, but also in Ethan's glue ear and even the unusual permanent spots i have!
Aaron had bloods for iron levels etc, full blood count, immune studies, chicken pox status, inflammation and another stool calprotectin test, plus some others that i think are base levels pre the new medicines.
To coordinate all this we should be put in touch with a specialist nurse and also have their new portal system set up where anyone involved in his care can access and upload information, including me, which sounds amazing!

Mickey's clubhouse play-area at GOS

We have a follow up clinic in January prob the 15th, which means we have appointments for the boys;
6th Jan GOS ultrasounds x 2 and urology study for Josh
8th Jan St Helier Gastro for both Josh and Aaron
13th Jan GOS urology for  Josh
15th Jan GOS crohns clinic for Aaron
16th Jan GOS Josh's surgical review