Ted

Ted started having problems at the age of 4 and it took a long time for a proper diagnosis of Crohn's disease.

At the end of February 2015, when Ted was 4, he started with a really sore bottom that just kept getting worse no matter what products we bought. In the end we took him to our wonderful GP, Dr Faruq, who took one look and immediately referred him to our local hospital. He wasn’t seen by the paediatrician until June 2015. She felt Ted was okay and took blood.

At this point no-one really said what they thought was wrong and in our heads we thought he was going to have an allergy.

There were days when Ted was lacklustre and he would get swollen lips so this seemed to make sense to us. He wasn’t ill every day and some days there seemed to be nothing wrong.

However, he did start to deteriorate and when we took Ted back for a follow up visit to the local hospital in September 2015, he was complaining regularly of tummy ache and was constipated badly. The paediatrician seemed to take this more seriously and asked us to collect stool samples, she prescribed movicol. By this point Ted’s bottom was covered in sore yellow spots and was weepy, he also had a large fissure which was bleeding regularly. One Friday night in October 2015, at about 8.30pm the paediatrician rang me – she said she was concerned about infection markers she had seen in his blood and the nature of the stool sample. She said she was referring him to the Children’s Hospital in Manchester and there was a waiting list.

During the four month wait Ted did seem to worsen but not every day, some days he was totally fine but other days he had tummy ache, he was constipated, he was tired and felt unwell. Food started to become a problem as well, we had hell fires trying to get him to eat and he began to lose weight. He saw Dr Thomas in February 2016 who looked at his bottom and said he needed cameras into his bottom and tummy to see if it was Crohn’s Disease. We were so shocked as it was the first time it was mentioned and, on top of that, Ted didn’t have the usual symptoms of Crohn’s. Whilst waiting for the operation he got worse and his weight slipped below 3 stone –  we still thought they were wrong about Crohn’s and we continued to believe it was an allergy. Unfortunately, due to an administrative error the referral wasn’t made, Ted’s operation was delayed and did not take place until after our holiday in August 2016. During that holiday he was really unwell. He was tired and cold (even though we were in Menorca!) he didn’t eat and his body was covered in sores, his lips were swollen too. We had to take him to the doctors there (who had never even heard of Crohn’s Disease). The difference from our holiday in summer 2015 to summer 2016 was unbelievable – he looked like a different child. We were all beginning to get really worried. He’d become moody and grumpy with his family too. Being so young, he could not always verbalise how he was feeling.

Poorly Ted at Hospital on a bad day.jpg
Luckily, his siblings and cousins are always understanding – we explain to them that Ted does have an illness that might make him have pain and be grumpy – they usually give him a bit of leeway (not always!)

Ted’s operation was done early on a Saturday morning – he was super brave both about the operation and taking the horrible drugs to clear his digestive system the day before. As I left him in the operating theatre I was the most scared I had ever been for any of my children. When he came back he continued to be the brave and resilient boy he had become over the previous 18 months… the consultant came back with us and told us Ted had Crohn’s disease and showed us pictures of his digestive system. He had the ulcers from his mouth right through to his anus. The doctor said it wasn’t the worst he had seen but it was bad. He said he would be admitting Ted to the children’s hospital as soon as possible to put him on the polymeric diet – no food and replacement shakes for 8 weeks. We were all in total shock. How on earth would a 6 year old manage 8 weeks with no food?! How could he have Crohn’s? How could we not have realised? What would happen to our little boy’s future now?

Ted was admitted to RMCH within a few days and started the shakes. We were warned this would be a difficult transition from food to shakes but the be honest by day 5 he was fine – he didn’t really miss food and as each day passed he got better and better. To help him his whole family gave up some food that they loved and if we cheated we had to pay him… he managed to collect nearly £100 in the 8 weeks! We also used a reward chart system, stars for treats if he did a full week having every shake. He didn’t miss a day of school and by the end he wasn’t even bothered about food. 12 -14 shakes a day and a treat of a can of Sprite Zero was enough for him! Testimony to the boy’s strength of character! By the end of the 8 weeks Ted had put on 6 pounds, his skin had cleared up, his hair had stopped falling out, he was not complaining at all and was full of energy. It felt like we had got our little boy back as he was no longer grumpy or horrible. If anyone is facing the polymeric diet and panicking – we were like this – we are a family of foodies but honestly it was not anything like the nightmare we thought it would be.

Within weeks of eating again the symptoms crept back in and we were constantly on the phone to the nurses on the IBD Team at the hospital. He got a terrible infection in his bottom over Christmas 2016 and was on steroids and they then tried azathioprine. This didn’t make much of a difference for long and we had to push for further tests. This would be one piece of advice I would give to any parent – don’t be afraid to push and hassle the nurses and doctor caring for your child. You do know if something isn’t right and you know best! I am constantly on the phone if I feel something is wrong and I have never been wrong – call it a mother’s intuition. Ted’s bottom was such a mess and causing him so much pain. In April 2017, Ted had an MRI and they found a fistula in his back passage. Unfortunately, another administrative error meant he didn’t get seen until July 2017 and didn’t start treatment until September 2017 when he started on Infliximab infusion – he now has this monthly. Ted’s symptoms are generally under control at the moment apart from issues with his bottom which constantly gets infected… again this week I have been on the phone to Julie his IBD Nurse and have got antibiotics and they are referring him for another MRI to see if the fistula is causing the problems. Like I say, hassle and push – you have to.

We have always been honest with Ted about his illness and he understands the importance of his medicines and treatments (he knows the names of all of his medicines, what he takes them for and when he has them). When Ted was first diagnosed a doctor at the hospital said never lie to him and be honest about the illness – we have done this from the start. We didn’t want his illness to dominate his life or him to think he can’t do something because of it so we let him do and try whatever he wants too and show him all those inspirational people who have it and have still achieved great heights – Darren Fletcher, Carrie Grant, Dynamo, Siobhan Marie O’Connor and Kathleen Baker. Ted still plays football, rugby, cricket, does gymnastics and swimming. His school have been brilliant and so supportive. We have always asked them not to let it be an excuse for anything with Ted – he does his work. We always try not to let Crohn’s be an excuse for him but we also try to understand if he is tired and doesn’t want to do something – it’s a really hard balance to find. We have always been the same over food and he eats the same meals as his siblings and cousins each night. I’m not going to pretend we get it right every time and my sisters often tell us not to beat ourselves up about it if we get it wrong. No one in our family treats Ted differently because of his illness.

Crohn’s and Colitis UK have brilliant leaflet about every step from diagnosis to all the different treatments – they even have advice for schools. We have used the leaflets for everyone, even his coaches! We have also learned to let ourselves rely on the support of others – my dad always takes him for his infliximab every month as I can’t constantly have time off work. Grandad can also treat him with things I won’t let him have like chewing gum!  Never be afraid to ask for help off anyone – your GP, the IBD team, the local hospital, even the local pharmacy – people are willing to help. Crohn’s Disease is covered by the Disability Act so should you come across a situation where you are not supported you can remind them of that – not that I have ever had too! I have heard Ted loudly telling people he has Crohn’s as he goes into the disabled toilet. I’m proud of him for being like this about it… the IBD Nurse described him this week as spirited. IBD kids have to be resilient, brave and proud and Ted certainly is.

The one thing I wish is that I’d realised sooner that Ted was seriously ill – I would have pushed more as I do now.

When the diagnosis came I thought it was the end of the world and cried for days but I now realise that it is manageable and the help is out there for Ted.

I only hope that for the future more money and time is dedicated to research into the IBD so that a cure and cause is found!

Ted May 2018 fighting Crohns and definitely winning.png

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