Diagnosis: Acute Disseminated Encephalomyelitis

 Kent, United Kingdom

In December 2014, my son who was 20 months old, was playing football with his big brother. About an hour later, he lay down for his normal afternoon nap, I went on to do house work and his big brother went and played Xbox. When Aiden woke up, he got off the sofa to walk to his brother’s bedroom, and I noticed he was walking with a limp on his right side. I asked Aiden, “Does your leg hurt?” He replied with no. His big brother then came out and said, “He did fall, Mum, when we were playing football,” so I said ok, we’ll see how it goes. Aiden limped all day so I made him sit and rest as well as a 20-month-old would rest.

The next day Aiden woke up and I noticed that he wouldn’t get out of bed, so I carried him to the front room. I noticed he wasn’t sitting up, he was hunched, so I put him down and he rolled back, so I sat him up again and he did the same again. He just couldn’t move, I rushed him straight to our local hospital where Accident and Emergency (A&E) sent him to a children’s ward because when they put him on the floor to crawl, he couldn’t. We got up to the ward and had blood work done, which showed inflammation. He saw a lovely lady who was a physiotherapist, who did not think it was a pulled muscle, so his fabulous, lovely pediatrician thought that maybe when he fell playing football, he hurt something and to give him a couple of days and see how he does. We went back home. On Christmas day, Aiden couldn’t even open his presents, it was awful and upsetting. The next day, Boxing Day, I took him back to his pediatrician who then mentioned ADEM, and that he could have fallen when playing football because he was getting weak!

He then went to see the doctor above him who asked to wait another week and then come back. But he could not leave Aiden another week like this, so he decided to call Evelina Children’s Hospital to get an emergency MRI.  By this time, I knew it was serious. He phoned Evelina, who at first asked to wait but he pleaded and they finally asked us to go down there. Our local pediatrician, who in my eyes saved my son, got us a taxi and paid for the fare. He didn’t care about anything but the welfare of Aiden. He was such a lovely doctor.

We got to Evelina at 10 pm and they had scheduled him for an MRI at 6 am. Aiden had his anesthetic and fell asleep. The worst thing is seeing your child be put to sleep. An hour went by and it felt like a lifetime. Once Aiden was awake, his dad sat with him when a doctor came and told us he indeed had ADEM. Now, I had never heard of this before, I was so confused and they explained it to me.

I had all sorts of questions. Will my son walk again? Will he sit up again? What is his life outcome? But none they could answer because it was the unknown. Aiden would scream in pain. The next day, Aiden began physiotherapy and his cycle of medication, immunoglobulins. It failed twice but they said they would try one more round and if there was no response, then he would need a cell transfusion. Whilst having his medication, Aiden underwent lots of blood tests, was given pain killers, he had needles poking him all day every day, but he took it like a soldier. He even saw a doctor coming and got ready for his checks. They used to laugh, they had all fallen in love with Aiden. Another child came in with a virus. Aiden then needed antibiotics so he didn’t catch it because he had an autoimmune disorder. After a month in the hospital, Aiden had a free weekend, so I asked if I could take him home just for the weekend so he could see the family. He was still not sitting up properly, he could, but just for a little while. The hospital gave us permission as they had to wait till Monday to see if the third cycle had worked. On the way out with Aiden, they said Aiden would need a miracle for this last cycle to work as she has seen it so many times. She said, I love Aiden, I think he is great, but just be ready when you come back!

On Sunday, I was dreading taking Aiden back, but as I sat and watched him on the floor, he all of a sudden got on all fours and began to crawl. I jumped up enthusiastically and he looked at me with a confused look. When Monday came around, the main ADEM doctor at Evelina wanted to start the next treatment after his physiotherapy. I was gutted, but he went to physiotherapy and crawled even faster than before, so the physiotherapist got the doctor and the doctor said that the treatment was working and that he would not need another treatment. I was so excited! Aiden stayed in the hospital for another week and continued to have more physiotherapy. Going home was the best treatment for him and it has done him a world of good. We continued to go back to the hospital for lots of checkups. Aiden then began to pull himself up. After more local therapy, Aiden began to walk. He has walking problems though, his feet turn in which causes him to drag them, which means he falls a lot. He also has a bad temper now and he is on medication for his bladder control. We won’t know a lot about the impact of ADEM on Aiden until he gets older. He is now three. He still has to go Evelina Children’s Hospital and still has his pediatrician who he loves. This pediatrician really did save my Aiden, he went to the end of the world for my son, we are so grateful for him. He used to ring the hospital and check on Aiden. Aiden also has asthma, but I don’t think that it is ADEM related. Aiden has been left with life changing disabilities but he conquers them like a soldier. We just have to see what the future holds for him but he is a happy boy and that is all that matters. ADEM won’t stop him.

Cassie Lewis

Cassie Lewis