“Our daughter was one of the sickest in the country, but now our worst nightmare is over”

What do we do when we go through a living nightmare? When the people we love the most; our own children, fall seriously ill? If anybody had looked into the future and told me what my child would be going through, I would have said “I will never be able to deal with that”.

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Mother

Our story begins about three and a half years ago. My daughter is almost thirteen. She is a cheerful, lively and busy girl, keen to participate in all kinds of after-school activities. I have had to restrict her sometimes, to make sure she does not take on too much.  The learning environment in her class is not particularly good, which has been the case for the past few years. In the summer prior to her illness, she had a few bouts of feeling poorly. We are told it is a virus and that it will pass. In retrospect our doctor tells us that she probably had glandular fever that summer, without us knowing it.

This horrible thing

So – when she is back in school, and we get to September – this horrible thing happens. I remember the day and the date. My daughter catches the flu, with headaches. Her condition deteriorates with a bad cough and sinusitis.

She is prescribed one type of antibiotics after the other, as she is constantly ill. Eventually she is admitted to hospital for examination. She is suffering from severe headaches and feeling tired. She is also coughing up phlegm. All sorts of tests are taken. The neurologists suspects migraine, triggered by an infection. The headache is the worst part.   

She is sedated and examined with gastroscopy (a procedure where a thin, flexible tube is used to look inside the esophagus). They find bacteria in her gut, and she is prescribed antibiotics. The whole thing is horrible, I feel very alone with her.

I remember this time as being powerless and very painful

For a period we are shunted between our GP and the hospital. We are in and out of hospital 13 times all told. We become seriously worried. Our GP does not know what to do, so sends us to the hospital. They don’t know either, so they prescribe some new medications, and we go home.  I remember this time as being powerless and very painful. The school is asking when she will be back. Our doctor does not know, sends us to the hospital, who in turn sends us back home. We try out every advice and medication they give us. She is interviewed by a child psychiatrist as part of her examination, but nothing is found. So: not physical, not psychological. What is it then?            

So: not physical, not psychological. What is it then?

As her parents we feel we are left alone caring for a sick daughter. She is only 12 at this time, and so ill that she cannot go to school. We also try home schooling, but she can’t cope. The pains in her head escalate, none of the migraine medication work.  

We decide to see a private neurologist to access help more quickly as it is difficult to get help from the hospital. However, no medication seems to work, regardless.

In the beginning I was the one who took our daughter to the hospital. So now I ask her father to take her, as I feel they see me as a nagging, overconcerned mom.

This actually becomes a turning point, as we have all had too much by now. Our daughter is screaming in pain. She is given a private room. We have been to the hospital so many times, even by ambulance. Enough is enough! As parents we have reached breaking point.

Oslo University Hospital (Rikshospitalet)

By this time, we – her parents, feel very scared and insist something is done. Our daughter is frightened too. The doctors are at a loss. We tell them to send us to Rikshospitalet, as we just read a newspaper article about the Pain Clinic they have there, and also about children suffering inexplicable pain.

Helene Helgeland meets the three of us in a wonderful manner. Fairly soon she begins to outline an explanation of what she believes to be the matter with our daughter

Our daughter and her father are flown by ambulance plane to Oslo, I follow on a regular flight. We get a week there together and are greeted by a wonderful hospital and friendly staff. Helene Helgeland meets the three of us in a wonderful manner. Fairly soon she begins to outline an explanation of what she believes to be the matter with our daughter. She has seen similar cases; this is what she works with at the pain clinic. We begin to calm down; finally, somebody understands. Our daughter is still very poorly. She gets a room to herself where we can live together as a family. We also get good training and understand that this could be a body-mind matter. Body and mind are connected, and if there is too much pressure, it can manifest as physical pain. When someone is subjected to stress over a prolonged period of time, it is like a fire-alarm ringing without a fire burning anywhere. The body is ‘stuck’ in a way.

When someone is subjected to stress over a prolonged period of time, it is like a fire-alarm ringing without a fire burning anywhere

During her hospitalisation prior to us being sent to the Rikshospital her condition deteriorated to the point that she was almost incapable of walking. She struggles to eat and cannot talk very much. She is in pain and feels exhausted just from eating.

They explain that it is best if her parents nurse her and they put together a multidisciplinary team.  We bring her home.  My understanding was that we should little by little encourage her to do gradually more. To make a schedule for her activities, such as breakfast, drawing, crafts, rest, etc. The problem is that she is too ill to accomplish any of this.

She needs to be lifted over to a toilet chair in her room. Her hair and body get washed whilst she is in bed

Over the course of these three years, we experience that our daughter needs nursing and help with everything. For a while she cannot stand smells, lights, sounds. She needs to be lifted over to a toilet chair in her room. Her hair and body get washed whilst she is in bed. She wants her hair cut off as it isn’t possible to wash it or comb it out properly. She just wishes to shave it all off to feel clean. For a while she needs a feeding tube. The whole experience is so extremely serious! The pain clinic says she one of the sickest people in the country. The multidisciplinary team looking after her are all nice, but to be honest, they are all helpless. They get feed-back from the Rikshospital, but the problem is that it simply doesn’t work. She is too ill.

For a while she needs a feeding tube. The whole experience is so extremely serious! The pain clinic says she one of the sickest people in the country

Her father and I take it in turns to go to work and to stay at home nursing our daughter. She can’t see visitors. For a long period, she cannot even speak, so we resort to written communication. She has a walkie-talkie to alert us whenever we are needed in her room.

There are so many details to recount from these years; too many to write down. But we find ourselves in a severe crisis where there is no help. I pray to God many times each day – if you are there, please give me a sign – that type of thing. I am desperate and determined that she will get well again. There is no other option!

Our daughter is begging for help! I cannot lie here anymore; this is not working out!

Hope at last

On several occasions I mentioned the Lightning process; might this be worth trying, but the professionals that were supposed to help us explained that they could not sanction this, as it is a type of alternative treatment. I don’t understand this and disagree with them.

I also read about Bjarte Stubhaug MD, and download his app. I follow the webpage of Recovery Norway. These three become very important to me. There! Finally, I find HOPE – the stories I read are so like my daughter’s history. They have so much in common. I read everything I come across that looks relevant. I speak to former patients. Meet up with others that once were ill, but now are well. I call the parents whose children used to be ill, but who are now well again.

I also read about Bjarte Stubhaug MD, and download his app. I follow the webpage of Recovery Norway. These three become very important to me. There! Finally, I find HOPE – the stories I read are so like my daughter’s history

I focus on what made others well again. I need HOPE! I read Live Landmark’s book, I contact Live, but I am the only one who wants this. So, it is useless.

Until our daughter tells us she will do anything it takes to get well again. Three years confined to her room, unable to see family or friends, three years of missing out on absolutely everything in life!

Finally, there is a doctor in the multi-discipline team who thinks we should try Bjarte Stubhaug. We contact him, but our daughter is too unwell to undergo treatment with him. He recommends that we get in touch with Live Landmark, as he knows she has helped others get up from their beds. It means so incredibly much, to hear him say this. Finally, there was a positive turning point for our daughter. That a proper doctor agreed that this was worth trying meant so much. He too had heard that Live had helped others.

Bjarte Stubhaug recommends that we get in touch with Live Landmark, as he knows she has helped others get up from their beds. It means so incredibly much, to hear him say this.

Finally!!!

The salvation of our daughter turns out to be Live, and the Lightening Process.  

Finally!!!

Again, I don’t want to go into too much detail, but from the very first contact we had with Live about four months ago, we went from having a daughter who was fully dependent on nursing and bedridden, to now having a teenager of fifteen who is out and about with her friends. She travels, she goes on the scariest rides in the Tivoli! She rides her bike, goes swimming, shopping, to family parties; all the activities youngsters normally get up to!

We have had the best summer ever, and our worst nightmare is finally behind us. The future is bright! NEVER, NEVER GIVE UP HOPE!

«Lyset du treng finst» – Helge Torvund (The light you need exists)

Forever grateful to Live Landmark for the job she is doing.

Mother to the strongest and best daughter in the whole world.

We have had the best summer of all times, says the mother who has lived through this story. Mother and daughter wishes to remain anonymous.   (Photo: Shutterstock)

Children and adolescentsFemaleParentsNext of kinME/CFS-like conditions, incl. undiagnosed ME/CFS and burnoutChronic painLightning processStress managementOther methods

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