Tuesday, 23 October 2012

Pull up a chair ... it's storytime

You may be aware that our youngest daughter has been unwell for many months. Last week, she made a remarkable recovery, in circumstances that I feel compelled to share. I know many of you have been very concerned for her, and have shared similar stories in an earnest desire to help our family. We have been sincerely encouraged by your thoughtfulness and concern. It seems only right to share what has happened; that our experience might help others of you who are struggling. The story is six months long, complex, and deeply personal. I will intersperse it with images from my spring garden which, as always, has been a solace for me :)

Prunus 'Shimidsu Sakura'
Olivia (age 11) came home from netball training on Monday 30th April, with abdominal pain. She was nauseous, white and weak. I kept her home from school on Tuesday, and her tummy pain continued. This pain has been a recurrent problem. Every few months or so for the last six years, she would have a bout of pain that would last for a couple of days and then disappear. The pain has always been in her upper and central abdomen, and always unable to be relieved with paracetamol or ibuprofen. The frequency of this recurrent pain seemed to be increasing, but I fully expected her to improve with a couple of days of rest and return to school. 

Two days later, Olivia developed a headache. It was frontal, extending across her forehead. Again, it was unrelieved by paracetamol or ibuprofen. While the tummy pain was recurrent, the headache was new. 

Multiple visits to our GP ensued. Blood tests and a breath test for a possible stomach ulcer returned normal. Abdominal ultrasound returned normal findings other than some inflammation of lymph glands in the abdomen, suggesting mesenteric adenitis. This is a common childhood complaint, often a reaction to a virus.

Farm garden, early spring 2012

Olivia's abdo pain and headache continued unabated for weeks and she was unable to attend school. Further visits to the GP and two late night trips to Emergency yielded vague suggestions of possible hormonal change. At no point did she show a temperature or vomiting. There was some dizziness, and a couple of instances of aura, suggesting migraine. In an attempt to relieve her pain, Emergency administered endone. This gave her a nice sleep, but had no effect on the pain. We tried migraine pain medications to no avail.

Rosa 'Reine des Violettes'
Three weeks into May, we were able to see a paediatrician. On examination, he felt that Olivia's perception of her abdominal pain (at 9 out of 10) was inconsistent with her physical presentation. This was the first suggestion that Olivia's illness may have a psychological component. I was confused about this, and defensive. I couldn't understand how pain could be anything other than a physical reality. Olivia, not missing a trick, said, "Mum, he thinks I'm faking it"! Hmmm, we had a lot to learn at that point!

The paediatrician scheduled an abdominal x-ray, which revealed significant constipation. This had never been an issue for Olivia, and her toilet habits had been daily and normal (yes, I'd been checking ;). She was treated with increasing doses of Movicol to clear her bowel. Her tummy pain was relieved a little, and we thought there may be some light at the end of the tunnel - so to speak! However, her abdo pain resumed soon after and the headache continued. 

An MRI of her brain in June eliminated any sinister causes of her headache. We joked with her that at least it confirmed she had a brain and that it was normal - she couldn't see the funny side of things by this point! The headache pain began to predominate, and moved to above her left eye.

We had her eyes tested - you guessed it, normal!


In mid-July, with no definitive answers, I tried Olivia on a strict gluten-free diet for two weeks. This made no difference to her pain.


Clematis montana
Olivia missed almost all of the nine weeks of Term 2 at school. When Term 3 rolled around (mid July), all medical advice to us was that she MUST return to school and learn to cope with the pain; that the routine of school was important to her recovery. Every morning was a struggle, and I felt cruel making her attend school. However, I persisted. Olivia battled through each day, her headache constant and unrelenting. She was having trouble concentrating on her work, but bravely toughed each day out.

We sought some psychological help at this point. It was deemed that Olivia needed to learn to relax and to try to get back to creative pursuits that previously made her happy. It cost us a lot of money for that advice, and I was pretty cranky and frustrated. 


I took Olivia to a physio several times to ensure her headache wasn't related to muscle tightness in her neck and shoulders. Pain remained unchanged.


Magnolia x loebneri 'Merrill'
Olivia's headache was now four months old. It was with her day and night. There was nothing I could do that would help relieve the pain. You can imagine, she was becoming increasingly frustrated and worried that perhaps she would never get better. Our family worked hard at staying positive for her, and maintaining patience and gentleness. But it would be a big fat lie to say we managed the situation faultlessly! Olivia's illness was testing us all.

We continued to see our paediatrician at regular intervals. As a personal friend, he was very concerned for Olivia, having not seen a childhood headache that had endured so persistently. He scheduled a lumbar puncture at our local hospital, to test for a condition called intracranial hypertension. This is essentially an overproduction of cerebrospinal fluid (CSF) which can manifest itself as a headache. During a lumbar puncture, a measurement is made of the CSF pressure. Olivia's procedure was not conducted by our paediatrician. Lumbar punctures are difficult, and unfortunately for Olivia, after three failed attempts, the procedure was aborted. This was a horrible day.

Prunus 'Elvins'
On Monday September 3rd, Olivia was admitted to the Neurology Department of a well regarded Australian Children's hospital for further investigations into her headache. I spent 11 days with her there, camping next to her bed. The staff were professional, careful and thorough. Day 2 of our stay saw a repeat of the lumbar puncture. As you might guess, Olivia was terrified. Thankfully, the staff had success on their second attempt. Her CSF pressure was normal. Many more blood tests were analysed, serious possibilities such as Wilson's disease were eliminated.

After 11 days of testing, discussions with neurologists, gastroenterologists, endocrinologists, psychiatrists, psychologists and pain experts, we returned home with a diagnosis of 'chronic daily headache'. We returned armed with a specialist neuropathic pain medication called gabopentin, which we hoped might break the cycle of chronic pain that Olivia seemed to have developed.

I also returned home with my head spinning with doubts that came from the psychology sessions: that perhaps I had a 'depression-prone', high-achieving daughter who was internalising her feelings; that perhaps she was being psychologically challenged with something that was outside her control and was overwhelmed with a sense of failure because she couldn't get herself better; that perhaps my close relationship with Olivia was a big part of the problem, and that I should distance myself from her. So many questions, so few answers.


Arums, lime kniphofia and snowball bush (Viburnum macrocephalum)
from the farm garden



At this point, we felt like we'd tried every trick in the book. All hope was hinging on the effectiveness of the gabopentin. However, Olivia's pain was now only a portion of the story we were dealing with. Olivia's stay in hospital had taken a serious toll on her state of mind. She was significantly affected by the lumbar puncture. I think an 11 day stay on a neurology ward shared with three other children did her no favours. At the age of 11, she was well and truly able to understand what was happening to the other patients, many of them babies and many of them with tragic prognoses. On returning home, there was a new problem to deal with - she was not eating or drinking. 

Our life seemed to be spiralling out of control, downward and quickly. Our previously happy-go-lucky, easy-going, always-hungry girl, had declined over the months to a shadow of her former self. She was sullen, quiet, irritable, sensitive to touch and noise, and depressed. It was heartbreaking to watch. She was struggling to sleep, fearful and plagued with horrible nightmares.

Ballerina crabapple 'Maypole'

We are a Christian family. I came to an understanding in my Uni days of my  wretchedness before God and of His gift of forgiveness to me. My husband and I have sought to live lives worthy of God, and to raise our children under Him. We fail miserably at this at times, but a desire was given to us all those years ago to remain faithful to God and to His teachings. So we have prayed ... and prayed, and prayed for healing for sweet Olivia. We have a community of wonderful friends who have earnestly prayed, many of them Christians, and even some who are not! It has been difficult, especially for Olivia, to understand why our prayers were not being answered.

Last Monday morning, both Olivia and I were at our lowest ebb. I had hit the wall emotionally, having no idea which way to turn. The medications from our hospital stay were proving ineffective. Olivia was in as much pain physically as she'd had in the last 6 months, and her mental state had deteriorated to a point where she didn't feel she could keep going. She had said to me, "Mum, I wish I didn't exist so that you didn't have to go through all this". Heartbreaking and very scary.

Too many flowers, no vases big enough. Solution? Use three small ones :)
On Monday night, in sheer desperation, we took Olivia to a Christian naturopath/kinesiologist/prayer healer, Yvette, who one of Olivia's teachers had persistently recommended to us. Up until this point, I had doggedly followed the conventional medicine path. My education has been rigorously scientific. I have a PhD in biochemistry and my education has endowed me with a healthy scepticism about natural therapies. 

On Monday night, Olivia, my husband & I spent an hour and a half with Yvette, and sweet Olivia walked away with NO PAIN, after 5 1/2 months and a smile on her face like we've not seen for a long time. Yvette used a combination of techniques including kinesiology, iridology, and prayers of confession and forgiveness. She quickly assessed Olivia as having an issue with her 'gut-brain connection' and further, that many of Olivia's organs were struggling to function. She used a technique which involved Olivia holding onto two metal rods which were connected to a computer. She was able to run some software which apparently pinpointed where Olivia's 'energies' needed to be realigned. She also prayed Olivia through some fear that she felt was burdening her. It was the strangest most confronting experience we've ever had, and has turned our thinking upside down. Thankfully my husband was there or he'd have thought I'd lost the plot! He'd never have believed me. The pain, both headache and tummy, left her in a particular instant, right at the end of the session. 

 
It is nothing short of a miracle. We have been praying for one, and on Monday night it was delivered! We are in complete shock, astonished by the transformation, and to be truthful, worried that it is too good to be true. But it would seem God has brought us from a point of complete desperation, to now bless us with a miracle. We are dumbstruck and enormously thankful. 

Seventeen 'Double Delight' roses from the farm for my newly 17-year-old eldest daughter.
I have spent much of the last week unable to function, such is the level of shock! If you'd asked me before last week if I believed in miraculous healing, I would have said yes, having heard many a testament to it over the years. But it obviously had not occurred to me that it might actually happen to us! It would seem my 'sensible' Sydney Anglican/Presbyterian sort of christianity had subconsciously set some limits on God's goodness to me and His power to heal. We are left reeling, confused, but awestruck, humbled and thankful.

Thank you to everyone who has endured this storm with us; for your many thoughtful messages, for kind gifts sent from afar, for your prayers and unending support. I have laid myself bare with this post. I'm not sure how long I will keep it online. I have been honest in the hope that our story might help others in a similar situation.

OUR GIRL IS BACK! She is back, as if a switch has been flicked. It has been such a long journey that we'd almost forgotten what the 'real' Olivia was like. She is happy and silly and making jokes; she is eating, drinking, and sleeping. She has maintained good health for the last week. I have been carefully watching the change, eager for it to continue. We are praying that this transformation for Olivia is permanent and that we can put the pain and suffering behind us. And that we can go forward, armed with a most astonishing story to tell!
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