A mother finds a way to help her child with Chronic Fatigue Syndrome
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.
Please leave a comment at the bottom of the page!
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.
Here are some social media images for sharing:
Hi
Thanks for this…sounds similar to my daughter. My daughter was diagnosed very quickly because of the pain, the joint swelling, fatigue..and depression. When I say I do not believe this is a chronic life long illness I am told I am in denial and its about pain management. Anyway I am disappointed that for doctors the first point of call is medication (which may not work).. At the moment my daughter who is 12 is on a program of alternative care, massage, chiropractor, bowen, yoga, healing and dance…naturally at times she cannot do some of the above but we try and stick to the program but the fatigue seems to take its toll on her time. (Oh I pay for the care, her DLA does partly cover costs)..My daughter has had little support with regards to her condition and perhaps doesn’t really want to acknowledge it (she was told the pain is not real but her nerves overacting…hence she has now become afraid to admit that she has pain!) . When we get stuck somewhere because she cannot walk without agony i watch her fight. She crashes in the house after school in agony..I know that this is unhealthy as I watch the inevitable depression as she tries to cope alone and in silence. Falling is the worst and the incontinence as yet her friends have only picked up a little..she cannot open bottles and her moods she hasn’t said..no its still a secret..but we believe there is a time frame to this and that a change in climate and air will help.
We believe in recovery and its sad that children cannot say or feel stigmatized by a condition which can vary so dramatically… thanks for sharing your experiences
Well, it’s always especially distressing for me to hear about young children with this illness. My first instinct is always to make sure that you get a second opinion and double check her condition with in-depth medical investigations to ensure that the ME/CFS diagnosis is correct and not an incorrect waste-paper diagnosis.
If the diagnosis is correct, the good news is that people recover, including children. I have spoken with numerous adults that had the onset during their childhood and who recovered.
Regarding pain, I do agree that the source of pain is the nerves overreacting (surprised to hear that from a Dr), but OF COURSE THE PAIN IS REAL. ALL chronic pain is in the brain, but that does NOT mean it isn’t real. It’s such a ridiculous thing to suggest, I simply can’t fathom how someone can say that. All I can imagine is that people don’t consider their choice of words very well. So you can say with ABSOLUTE certainty, that we all understand your daughters pain is REAL and NOT imagined. But if diagnosed correctly, it is in the brain and that presents a wonderful opportunity for healing – in other words, it’s good news!
You are doing the right thing by showing your daughter understanding and making her realise that she is not a hypochondriac and that you believe what she tells you. The programs and strategies featured in the various recovery interviews are of course still relevant for her. But at her age, I think it makes sense for them to be reframed to be age appropriate.
All I can say is, the key is to focus on the root mechanism and to explore WHAT has triggered her condition. I cannot express this strongly enough, otherwise you may waste valuable time.
Best wishes & hugs,
Dan
Y’all hang in there.. I was diagnosed at age 9 and my mom is my biggest warrior. I somewhat recovered until I relapsed at age 25. I’m writing to share a petition that asks the NIH to increase funding for research of this horrible disease, and with enough signatures I think we can impact real change and have our voices heard. I know what it feels like having an “invisible” illness.. Help bring this disease to light and increase our chances to find a cure. Sign here:
https://www.change.org/p/ask-nih-for-increase-in-funding-to-help-cure-invisible-disease
Tell your daughter to hang in here. Change is happening and things are going to get better. Health and happiness to you both.
Thank you for doing this interview. This women’s son doesn’t know how fortunate that he is to have a family that stood by him and fought for him. As a man who has gone through a similar experience, with a quite similar athletic background, I know first hand how difficult it is to keep going and to not only fight the illness, but to fight the stigma and disbelief that especially attaches to men with this illness. My illness started at around 30 years old and has now gone on for ten years and I can talk about the other side of the experience when a family(although loving and capable, not evil at heart), is unable to navigate towards belief until it is too late(maybe). I lost not only my family through CFS, but the majority of my friends chose the side of judgment and disbelief…while casually and actively supporting virtual strangers in their battles with addiction, Cancer, ALS, or other “real” “worthy” “non-too-much-time-on-hands-malingering disease”. I will be the first to admit that I have not always been the most pleasant man or son when ill, but I really would love to put anyone in the “virtual reality CFS machine” for only 5 min and see if they could then imagine year upon year of this feeling combined with the resentment of losing one’s time in life and suffering in silence..I believe this experience if it could occur(maybe in future, we are printing organs at moment, so who knows!), would allow friends or loved one’s to instantaneously “learn” compassion towards those with “invisible illness”. Instead, I’ve encountered ego, and arrogance when others(my mother and father and sister included) try to tell me how they would approach this illness if it had occurred in their lives and how much better they would handle. I was fortunate to have savings when my illness began and also the drive and stubborness to keep seeking a “cure” while also being emotionally destroyed by having my own mother and father and sibling tell I was “F-ing crazy” at times and to get my “head checked”.. again, these are the same people that profess to love me. I really appreciated what Darcy said about how important it was to pursue the mental solutions and the physiological solutions/diagnosis at the same time..and I’d say perhaps prioritizing the physiological issues if they seem more urgent. For example in my case, I had heart issues and as a surfer and super well trained athlete, I instinctively knew my heart was not behaving normally…however, my family at the time was claiming anxiety and/or depression. I can’t tell you what it feels like to be a man that had near perfect attendance at school, who hustled his way to the top of each sport’s team to become captain, who graduated with honor’s from top business college, and traveled around the world at age 22/23 on his own(hitch hiking, camping, etc. pre-internet)…how my family chose to judge me and relegate me into the world of “somatic illness” from the start, when I was at the time being recommended heart surgery by our area’s most respected cardiologist…my folks thought it would be safer for me to talk to a psychiatrist, rather than address my bradycardia and murmurs. so, I paid huge fees to get psychiatric assessments on my own, while my family did nothing and received several written “refusals to diagnose with anything of a psychological origin”, the mental health professionals went on to put in my chart that a “physiological cause” should be pursued and the patient was at no risk psychologically beyond the “trauma” caused from having loved one’s not believe in his physical illness. This is a topic that i’d love to see discussed further in the chronic illness community. It is indeed a traumatic experience for anyone that is going through a crisis to have others not only not believe you, but to take it a step further and ridicule or judge the way you are handling it. This is with a caveat, if a person is expressing obvious mental health issues or a psychiatric break or is suicidal, the priority for family and friends should be to first respond to the mental health and save the person’s life. If, after the mental health is addressed, the person then becomes healthy and all the physical symptoms and fatigue alleviate to a near full recovery,then the ill person should be thankful that a very real disease(mental illness) was treated effectively. I am by no means denying the voracity and impact that mental illness can have on a person the physical pain/symptoms that it can manifest, but I think we are doing a disservice as caregivers or in familial support by subjectively choosing the which is priority the physiological or mental/spiritual. I also believe the two are massively intertwined and must continually be addressed together for most to recover from CFS or any other disease for that matter. I honestly feel I would have recovered in about 2 years or less from CFS and my life might be incredibly different if I had been given the support emotionally from family(especially my mother..something about a mother’s love or scorn) at the beginning when I had the most “qi”(life force), the most hope, and the most resources to recover… Instead for me, I’d like my semi-tragic demise to stand as a warning to others who might go though a similar experience. I’m now in my 40th year, I’m battle scarred from 10 long years of not only losing faculties(especially cognitive), but losing the aspects of my self that I used to love and others were drawn towards. I am now sadly, a quite “jaded” individual that instead of thriving of the “solo worldly travels”, is relegated to “isolation” and forgotten about…I now repel others instead of attract them. My family is so far down the road of “their truth” that they have repeated the mantra that it is my fault that I’m sick and that I choose not to “receive help properly”, and they must go on with their lives and like to keep me “out of sight out of mind”. I have been told by several therapists and from reading many books on the topic, that it is coping mechanism for people to create a false reality that allows them to deal with something they have done wrong to a person they care for… I only ask my family and think this is the same for most who have family issues and chronic illness, that they apologize and take ownership and be open to change they way the support their loved one through illness. I think most would admit, while it is great and necessary to have financial assistance during these times, we’d trade any dollars for emotional support and belief 100% of the time. I had to make the sad decision to let go of my family, they refused to make any attempts at change and left it up to me to not only(in a very ill condition, while they are very happy and healthy) try to treat my illness, but they also said I must change who I am in order for them to be in my life. I have never argued with trying to improve myself, all I asked is that they try to improve themselves and not just say: “this is us, take it or leave it”.. that is not love, that is putting barriers between people when bridge would better serve all. I hope to make a full recovery myself one day and write a book or find a way to help people with letting go earlier of the emotional baggage that comes with CFS. I held on to this baggage far to long and it destroyed most of my hope of recovery. As a man that always followed through, who was captain of teams, president of student clubs, and independent enough to travel and be successful living an “outside the box” existence, I found it extremely difficult to understand how people all of sudden thought I “quit on life” or I was enjoying spending all I’d worked for to live a life in doctors or in treatment. This type of disbelief will ruin anyone and I found the emotional scars/PTSD to be more painful than the actual CFS syndrome and its many ER visits. I’m not ashamed to admit it, but at 40, I’m a man that still wants to make “mommy and daddy” proud before either of us are gone, but at the same time, I don’t want “mom and dad to fix” this for me….only thing I ever wanted was for them to make me a priority and to meet me half way. Anytime I showed resilience and attempted to continue on with activities of my past(surfing, exercising, yoga, dancing, etc..) and god for bid, looked “well” doing it…these instances of courage, would be used against me and people would further judge the “realness” of my condition. The interesting thing in life, it is rare that one can pick up a phone and call a virtual boss and ask to work for the next indeterminate amount of time, perhaps 1 hour, maybe 5 hours, maybe 30min and then have the next few days off…these jobs don’t exist as far as I have found(they’d be great for us in CFS land, ha, ha). However, those who are ill with CFS like illness, can “seize the moment’ when they feel well, knowing that it is often fleeting, and choose to visit with a friend, or see a movie, or maybe even do something more vigorous and risky, like surfing in the ocean(my church/drug of choice)… I chose a long time ago to try to ignore the judgment and simply do what gave me some “relief” or “peace” from the majority of days that i was suffering full-time from my health issues. I have paid a dear price for this and most of my friends and family would equivocate my ability to do something fun in the moment, with an ability to take on study or even part time work… it is a case of damned if you do, damned if you don’t… I am judged as depressed and not trying if I don’t “get on with things”, but if I choose any of the old hobbies or things that bring me joy and I believe some healing(mental/physical)…I will be judged harshly. I know that I’ve gone deep down the road of my own story and written much more than I anticipated, perhaps I should have used a different forum…sorry. I really wanted to just thank you to Darcy and to let her know that she is the exception and not the rule as a mother.. I’ve seen my own parents on parents of sick friends reject and abandon their children who have inconveniently become sick with a condition science is still catching up with… While I have lost hope with my family, I have not lost hope with myself and my chances of making a recovery…the question will be if I can be happy again after losing so much of my life and losing the love of my family. I think the scars from my family will take longer to heal and will likely never heal unless my family discovers the prescriptive cure they hold in their own hearts, but so far, are to trapped in their ego to recognize. Thanks Dan for what you do(hope to provide a similar forum myself one day soon) and thank you Darcy! I hope to take a look at your book and maybe even gift a copy to my mother;) peace
Thank you for your comment. I am glad the interview resonated with you!