When you have a child diagnosed with a rare disease nothing prepares you. Growing up for me, life was ordinary, the only significant ailment I remember, was my brother breaking his arm when he was about 12 or 13.
The second of four siblings, life was good. We had a nice home, we were happy and healthy. So when I went on to have my own children, I naively thought it would be much the same.
All was well, until my youngest began limping at around 18 months old. Often he would recoil in pain. Trips to A and E and the GP came to nothing. Eventually one morning he was unable to walk. Finally they x-rayed his spine, they found LCH disease. Langerhans Cell Histiocytosis . It is now classified as a cancer however it is the only cancer that can spontaneously resolve on its own. Langerhans cells are a type of dendritic cell that fight infection. LCH is considered to be an autoimmune phenomenon in which immune cells over produce and begin to attack the body itself.
In the end my youngest son, Jay, did not need any treatment, however if the disease had been found before his vertebrae had collapsed, he would not have suffered such extreme pain. He also has spontaneous back pain still, at the age of 13, could this have been avoided also? I know the answer is yes.
“Back pain in children should always be taken seriously” I will never forget these words spoken by the oncologist when Jay had a follow up appointment. There were around 5 students in the room, I was so grateful to see them absorb this information with great interest.
So when Kade began to experience severe back pain at aged almost 12 I thought back to what Jays oncologist said. It stayed with me. Yet no one was concerned. Tics? “Oh children grow out of them”, do children grow out of chronic pain and personality changes as well? I think not. Sometimes when it comes to rare disease, the focus is put upon one symptom. Take for example Jays limp, the GP told me that the way he walked was “age appropriate” was the crying in pain “age appropriate” too?! The short answer is no.
When I begin thinking about the cause of these diseases it opens a can of worms that I could talk about for days. Gut microbiome, vaccinations, diet, mitochondrial function, coxsackievirus, autoimmunity, genetics, streptococcus, neuroimmune disease, autoimmune encephalopathy, ehlers danlos, RNA viruses, DNA viruses, the list for me, and I know others, is endless.
Having had two children with “rare” diseases, you would think there would be some kind of interest. A rare phenomenon surely, siblings with two different rare diseases. A chance to learn perhaps? Maybe it’s just me. I have a deep interest in the brain and neurological disorders, autoimmunity and the root cause of it all. At the moment it appears doctors widely (not all but the majority) try to control the symptoms with out looking for a cause, this grates on me profusely. However this is what happens, when lightning strikes twice.
One thought on “When lightning strikes twice”
Thanks for sharing your son’s story. I hope children with AE and PANS can not only be diagnosed (and early!), but get the treatment and support they need while dealing with this medical condition. It robs lives – for the child and family. It takes away not days or weeks, but years and disrupts normal life as you knew it before it hit.
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