Our December warrior Caleb

Caleb’s story is written by his mum Adela. A small proportion of  children with infantile spasms later develop Lennox-Gastaut Syndrome – characterised by multiple seizure types and characteristic EEG abnormalities. Seizures in LGS are often difficult to treat. Caleb’s story illustrates the difficulties families with drug resistant epilepsy are still having accessing medical cannabis, despite it being legal to prescribe on the NHS for five years. More information on the campaign for access can be found at https://medcanfoundation.co.uk More information on LGS  at https://lgsfoundation.org

Caleb was born in Malaysia, where we were living as an ex-pat family, in August 2016 after a normal pregnancy and delivery. He was our third and final son, but we felt so blessed to have our healthy family. He fed, played, slept and was hitting all his milestones, but at just over three months old, things changed very quickly.

On the 6th December I took Caleb on a walk, I was listening to music and as he was just starting to nod off he suddenly startled, as if something had made him jump. I took my earphones out but couldn’t hear anything. I thought little of it as he drifted back to sleep. Two days later I noticed the strange movement again when he was napping and mentioned it to my husband who suggested we keep a close eye on him. Later that day I was feeding him when he suddenly unlatched and I could feel him scrunch up against me. I moved him so that he was facing me and managed to record another three of the movements. I sent the recording to my husband and he told me to take him to the hospital straight away as he had done a quick Google search and suspected infantile spasms. I was lucky that a paediatric clinic was just about to start and the doctor on duty agreed to see us straight away. I showed him the video and he agreed it looked suspicious. Caleb then had another cluster and we were admitted immediately. Ringing my husband to tell him was the hardest thing I’ve ever had to do and took me several attempts to get the words out. The next morning an EEG and MRI were carried out and prednisolone started that night. To say we were anxious and afraid would be an understatement.

Caleb changed within hours of starting the steroid treatment. He would cry non-stop and fed until he vomited, very different from the contented little baby of just a few days before, but the spasms started to reduce in quantity and intensity. Unfortunately, they returned during the pred wean and this is when I came across UKIST, which quickly became a place of comfort and advice. We were offered vigabatrin but having so little knowledge we opted for another round of pred. This didn’t work so we ended up adding vigabatrin anyway which seemed to do the trick. Once off the pred Caleb went on hunger strike and it didn’t take long for the weight to drop off thankfully, as finding clothes for a big baby in an Asian country was not an easy task! The attention he received because of his weight gain was sometimes horrific as the locals did not have the same tactful approach that we are used to in the UK.

During this time one of his tests showed up positive for a metabolic condition, however further investigation would need to be carried out in the UK but as we weren’t currently residents, we would have to pay for the testing which we were told could be thousands of pounds. We managed to contact a UK based professor who had an interest in the area and as it was a very rare condition, he said that if we arranged for Caleb’s samples to be sent (next day courier by air on dry ice) then he would have the tests carried out free of charge in the name of research. The results from these tests however proved Caleb did not have the condition.

After three months seizure free, our hearts broke again as Caleb relapsed for the second time. We started experimenting with other meds and a few months later gained control once again, but in January 2018 he started having other seizure types and it was clear by then he was not progressing as well as he should have been development wise. A year later we relocated back to the UK as we realised that Caleb would most likely need a lot more support than he was receiving in Malaysia and was most likely going to need to attend a special school.

By the start of 2020 his seizures had increased dramatically and were very distressing for him and us. Although his new paediatric neurologist was offering us what was available to him, we decided to try a private prescription of full spectrum CBD via a private consultant. The results were amazing. Our happy little boy returned, and his seizures decreased from many a day to just a few a week. This was a very expensive treatment but one we were willing to fund any way we could. However, his NHS consultant made things extremely difficult as they did not agree with the use of THC and as a result the private doctor was investigated by the General Medical Council and we were required to submit evidence for the case. During this process Caleb was given an EEG via the NHS which led to a diagnosis of LGS (Lennox Gastaut Syndrome) and was prescribed Epidiolex (CBD isolate) he also started the ketogenic diet. Soon the GMC concluded that the private consultant was working within the recommended guidelines and was permitted to continue prescribing for children with epilepsy. Sadly however, the situation proved too stressful for them and they decided to take early retirement.

Caleb remains on CBD but does continue to have daily startle head drops. We have tried adding a private prescription of THC but sadly this has not helped. Despite this and other challenges, Caleb is doing amazingly well and brings so much joy to our lives every single day. He is loving, spirited and very resilient.

I think back to those early days when I felt so frightened and isolated and I hope that anyone going through this awful diagnosis can see that they are not alone and that they are stronger than they think.