Few things are more emotionally exhausting than not knowing how to help a child with Chronic Fatigue Syndrome, especially if it is your child!

Darcy Shedden shares her journey through the worst years of her life during which she saw countless medical professional whilst trying to help a child with Chronic Fatigue Syndrome; her son David.

You may agree or disagree with the steps that David and Darcy took along the way. But in the end, David’s recovery from the illness is a great success and a testiment to both their character and determination.

Their mantra and most powerful message for recovery: “Never Give Up”. “Never stop believing you can fix CFS”

Let their journey give you hope that recovery from ME/CFS is possible and that you should never give up and always continue to help a child with Chronic Fatigue Syndrome.

David’s story of Recovery as written by his mother Darcy:

This story is an account of the five-year battle my son David and I waged against his illness, chronic fatigue syndrome (ME/CFS). Right now though, as you sit and read our story, I am going to pass on the critical piece of information that I am sure you are keen to hear… seven years now after it all began, David is almost 100% well, with a typical week including working every day, playing sport most weekends and going out with his girlfriend and friends on Saturday night. This year, he even completed in Sydney’s ‘City to Surf’ running race!

But, to go back, David began to feel unwell about two-thirds of the way through year 8 of high school. The symptoms were always the same: tiredness, headaches, abdominal pain and nausea. Prior to this, he had no significant childhood illnesses. He was an excellent athlete, academically gifted, socially popular and was happy within himself. Life was progressing along the anticipated happy and successful path we all expected but, it was not to be that way for very much longer. Suddenly, only a matter of a few weeks after having, what appeared at the time, to be a simple head cold, he began to alternate between days when he would feel well enough to go to school and days when he simply could not get out of bed in the morning. Many, many days we battled as he buried his head into his pillow. “I feel tired Mum, really tired. I’ve got a bad headache and I feel sick in my stomach’.

These early weeks were the beginning of our hell: for David, the destruction of what should have been some of the most wonderful years of his life, and for me, the beginning of what was undoubtedly the worst of mine.

Our first medical visit was, naturally, to our general practice, where he was diagnosed with a stomach bug (we had travelled to the Solomon Islands) and medications prescribed. Weeks later however, there was no improvement. Due to a family history of ulcers he was then referred to a gastroenterologist, who, after finding nothing in his tests results, advised us that his problems were “functional” (psychological) and possibly a reflection of issues at school. Our next step was to consult with a specialist paediatrician, who felt sure that his problems stemmed from sleeping issues and/or a personality issue. Various drugs, Normison and Zoloft, were prescribed to help David get back to “normal”. A recommendation was made that an appointment with a psychologist should be the next step. Three appointments later, she determined that David was a “school refuser” and that we, his parents, were in need of “basic parenting education and management.” (She had never bothered to find out that I had trained and worked as a psychologist with teenagers for much of my working life.) As you can likely imagine, there were no further appointments with her.

During all these stressful months of wasted time and effort (and money!), David had missed a great number of days of school. According to David…. “I often did feel nauseous and had bad headaches but I have to admit that sometimes I over-exaggerated these things. I just didn’t feel that telling Mum that I was tired was a good enough reason to stay home from school— especially in the early days when everyone was telling her I was just refusing to go to school and that there was nothing physically wrong with me. I went to school when I could and just stayed home when I couldn’t. Pressure from Mum and Dad just made for a worse mental state and I was often really angry at both of them when they hassled me”.

After months of achieving nothing with our doctors, and due to my utter frustration with the medical people consulted, I began my own research… determined to find out what was affecting my previously ‘perfect’ child. Weeks and weeks on the internet and searching through medical texts looking at David’s symptoms finally led me to Glandular Fever. Surprisingly, this was one of the few things that the doctors had actually NOT tested him for. Subsequent bloods showed that he had indeed had the Epstein Barr virus, and, with hindsight, we pinpointed it to the “simple” head cold we had ignored those months before. Indeed, rather than it being a cold, it was likely a bout of Glandular Fever. At the time, because he was about to embark on a rugby tour to NZ, he refused to give-in to being ill and carried on regardless. To my now-educated mind, his Chronic Fatigue Syndrome was a result of us having greatly underestimated what was causing his symptoms.

So, after many months of fruitlessly consulting with the normal medical profession, I finally convinced myself that I was the one who best knew my son…..no, he did not have a personality disorder, or depression….. he was physically ill from a virus that had interfered with his immune system. All I had to do now was fix it!!! I confidently made an appointment with an “alternative” Integrative Medical Professional.

Typically, it took us a number of weeks to get to see this doctor. In the interim, my family G.P. continued to ask us to consult with doctors he felt could be of assistance to David – a second psychologist and then a psychiatrist. (Both their assessments were similar to the previous ones consulted – that he was a school refuser and that there was something wrong with my husband and me for not forcing him to go to school.) When we finally got to see our doctor of choice, what we now heard from him was music to both our ears. David had CFS, and he was going to begin David on a regime of supplements that were going to help him feel well enough to get back to school. These included melantonin to help him sleep, Gastrocare, Vitamin C, Bovine Colostrum, L-argenine and Shitake mushrooms. Within a month David was back to school almost on a full-time basis. We were both ecstatic!! He even began to feel so well that, unbeknownst to me, he stopped taking the supplements. Aaahhhrrrgh!! Within a month, he crashed badly and was again unable to get to school and we were both devastated. Unfortunately, going back on them did not have the same result as they had previously, and he was again unwell.

Back again to our G.P. saw us referred to various doctors: allergy consultants, dieticians, a cardiologist and a neurologist – all with no result. I tried a chiropractor, a hypnotherapist, tropical disease specialist and an acupuncturist/Chinese doctor – also to no avail. Surprisingly though, one doctor that did have an effect on one of his symptoms was an ADHD specialist we saw to help with his brain fog. Dave was put on Ritalin and he found it amazingly helpful in coping with his schoolwork.

David’s school was very understanding of his continuing absences all throughout his illness. He was permitted to do much of his schoolwork and his exams at home and allowed to attend soccer practice even if he wasn’t able to get to school. This was so important in helping him stay in touch with his friends. In David’s words….”it was pretty hard not being able to do what I wanted to do all the time. It was unfortunate that I missed out on a lot of my teenage years and going out on the weekend with my friends, but in the end, I needed to look after myself and give myself the best chance possible to do the small amount of things that I could.”

Three years after he first became unwell, we consulted with a holistic G.P. who specialised in CFS. I supplied him with all Dave’s test results and he immediately determined that Dave was suffering from an immune disorder (basically CFS). David required an extended course (12 months) of antibiotics, anti-fungals and a variety of supplements (Vit C, Omega 3 fatty acids, acidophilus etc). He also felt the Ritalin was a sound idea. Gradually over the next few months, David’s health steadily improved. After years of heart-ache, both our lives were almost back to normal! In his final year of school he missed only 50 days, was able to sit for most of his trial and HSC exams and received a result high enough to gain university entrance – which he declined. Getting through school had been enough!!

In his first 12 months at work, he went to the office for three days a week, slept three and saw his friends on the remaining day. The next year he was working 5 days and started playing sport once again. He occasionally still suffers from respiratory illnesses but manages to work through them. He still takes a variety of vitamins but, on the whole, has recovered from his immune system problems.

David again…….”I was always sure that mum and the doctors would figure out what was wrong with me and why I was always tired. I was really relieved when the diagnosis of CFS was made because it showed that I actually did have a medical problem. Up until then, it was difficult to explain to the kids at school what was wrong and why I was missing school. Now that I have left school, even though I am not fully over it, I am 95 per cent better and my illness is pretty much under control. If I can pass on just one piece of advice to another kid with CFS, it is this: Keep your really close friends close to you, because you need them to talk to. And don’t let the doctors talk you down. You know you are sick and not bludging. One day you will feel better and life will get back to normal.”

Darcy Shedden has written a book about their experience:

“My Teenage Son had CFS” is available in hard-copy from Palmer Higgs Books

https://www.palmerhiggsbooks.com.au/my-teenage-son-had-chronic-fatigue-syndrome.html

And as an e-book from Amazon.