My son Matt is 13. He was diagnosed at 11 and was very very ill at that time, he was in hospital for a long time unable to walk and came out in a wheelchair, before they worked out what was wrong. when he was eventually diagnosed I was lucky enough to find this forum and gained a lot of support from the good people on here. I haunted the forum day and night In floods of tears, grieving for the life which I felt Matt should have had and terrified for the future. I read what other kids were going through which in many cases was even worse than Matt, with kids who were much younger. I was in the depths of despair thinking that Matt was only going to get worse and those awfully sad tales were what lay ahead for him. Once diagnosed Matt was put on a meal replacement called Modulen and then after four months he was put on azathioprine (and yes I agonised over that as we all have) and omeprazole. He was still unwell and very up and down suffering what appeared to be flares but which the tests did not verify. So what is the good news? Since around November Matt has been getting better and better. The turning point came when he started to worry about his height. He had read that having crohns can affect growth and his friends were getting their growth spurts and he was terrified of being left behind. He decided that he would supplement his food with two drinks of Modulen a day in the hope that the extra nutrients his body would get would help him grow. This was a big decision for a boy who hated the stuff and had twice lived on it for months instead of food. Well, The outcome has been dramatic. He has grown around 4 centimetres and has gained around 5kilos. But the really good news is he feels like he no longer has crohns (his words). No pain, no joint pain, no problems with his bowels at all just regular bowel movements. His energy is through the roof. He is now back at gymnastics, he is doing archery and parkour (similar to free running), he is a volunteer for St John Ambulance and his life is good. He was even picked to be part of a team demonstrating parkour at his open night at school. He has signed up to do his bronze Duke of Edinburgh award.
I am sharing this as I never thought I would see this day. He is clearly in remission (for how long I don't know). Whether it is the meds finally kicking in or the Modulen supplements which have caused it I cant be certain, but I am convinced the Modulen has played a part.
So to all you parents out there whose child has been recently diagnosed and you are grieving for what they have lost I would like to say there is hope. Matts life is good, long may that last and I hope all your kids get there too xxx
I am sharing this as I never thought I would see this day. He is clearly in remission (for how long I don't know). Whether it is the meds finally kicking in or the Modulen supplements which have caused it I cant be certain, but I am convinced the Modulen has played a part.
So to all you parents out there whose child has been recently diagnosed and you are grieving for what they have lost I would like to say there is hope. Matts life is good, long may that last and I hope all your kids get there too xxx
