The one half will take over the tasks of the other.
– We have been open about the disease and we all feel that everybody is caring. Niklas is one of the gangs and has had good friends, says father Bjørn Lohne Hansen to Norsk Ukeblad.
A very rare disease caused the doctors to unplug Niklas left hemisphere. But the six-year-old does not make it impossible for that reason.
While some of the brain’s abilities get up, the older we become, a study has shown that the brain begins to lose some key abilities already in the age of 27.
Before we are inside the door of dad’s apartment in Drammen, Niklas is greeted with a firm handshake; a handshake that does not let go of the ceiling.
– Come, we have gingerbread! An eager smile fills the face.
Who would have thought that this boy a few months ago woke up after a major and comprehensive operation, without language and with the left hemisphere disconnected?
Like other five year olds
We begin the story of Niklas 13. August 2012. Until this day he has been like most other five-year-olds. High and low. Both at home and on the football pitch.
The day before, Dad thinks that everything is not as it should be with the son of the football pitch. He is, as is not quite himself, not as energetic as usual.
– Our daughter is an angel
What they do not know is that a scary disease has lived in Niklas for a long time already without knowing.
It’s Big Brother Daniel who finds him in the room around his bedtime. Bjørn cries out of the loud voice:
“Dad, you must come! Niklas is so weird! “The five-year-old is lying and shaking. It is shaking off the mouth.
Bjørn believes his son is about to choke and dials the emergency number while he starts shaking his son.
Had he realized that this was a powerful epileptic seizure, he would know that he would not shake the boy.
There are no medicines that can make little Sarah fresh
But now the father does not know what’s happening and grabs Niklas. Fears he must disappear. It is as though time is waiting while waiting for the ambulance. The air is so tight.
Epilepsy is not really a disease, but a symptom of many different conditions that all lead to a transient disorder of the brain.
15 minutes feels like eternity, but eventually the ambulance arrives and takes them to Drammen Hospital.
Mom Hege Bøyesen, who has shared the care of her children, hurries to the hospital as quickly as she can after being called.
It’s a shock for her to see her lying there so ill.
A new shock awaits when the diagnosis comes. For the next day, Niklas gets a new attack. Based on the symptoms, the doctors suspect the very rare disease Rasmussen’s encephalitis. Encephalitis is an inflammation of the brain that causes nausea and dizziness. Sometimes encephalitis patients get epileptic seizures and paralysis in certain facial muscles.
The mistake is confirmed quickly through tests, and Bjørn and Hege will know the consequences:
- Rasmussen’s encephalitis is a rare, chronic inflammatory disease of unknown cause most commonly seen in children aged 1-15 years, but has also affected adults.
- The disease is very rare. In 1997, it was described in excess of 100 patients worldwide.
- The cause of the disease is unknown. Pathological findings in the affected mind half suspect virus infection, where the immune system misunderstands the situation and continues to take the fresh cells.
- Common anti-epileptic treatment often has a bad effect and it is therefore important to consider other treatment options quickly.
(Sources: Journal of the Norwegian Medical Association and Wikipedia)
– We felt we participated in an episode of House
The disease eats the fresh tissue in one hemisphere. The cause of the disease is not known, but the doctors suspect a virus infection where the immune system misunderstands the situation and continues to take the fresh cells.
Viruses are not bacteria and therefore, antibiotics do not work as medicine.
In the long term, an operation will be inevitable, telling people in white. Probably it will take place in five to ten years, the first forecasts will sound.
Within that time, everything that can be tested is tested. That is, new medication. Medications that last for a while, maybe a few weeks before Niklas again gets a new attack.
Shuttle between hospitals
The boy is sent in shuttle traffic between different hospitals, while the seizures are becoming more frequent. The existence of the family is encapsulated. The world is reduced to a hospital bubble. Everything outside has to be put on hold. Hege and Bjørn have a “tour” at the hospital and relay each other.
Fortunately, there are nice grandparents nearby who can help with the other two kids, Daniel and Julia. The little girl at this time is too small to understand what’s happening.
Because the disease is so rare, and the doctors have so little experience with it, the way goes as they go. For parents it’s an additional challenge never to know completely what’s going on. New medications are tested. The problem is that they only work for a certain period, and then they have to be replaced with new ones.
Eight to ten attacks per hour
Life is uncertain and tough. Fortunately, the protagonist is doing fine. Niklas shows an incredible turnaround and thinks it’s okay to be in hospital. He would like to squirt the syringes himself. The boy is high and low in the hospital corridors, with white coats in his heels.
Niklas does not really notice so much. When he fails and gets an attack, he has no pain. Luckily. The attacks are just getting more and more.
Bjørn creates a log for the overview. In November, he accounts for eight to ten attacks per. hour. Soon they are so many that they can no longer be logged.
The situation is untenable, and the quality of life for Niklas and the family also. The operation they thought was a few years away, must be speedily accelerated. Without surgery, the little boy will not survive. The entry is scheduled for March 2013.
7. In January, Niklas will return to the hospital. The doctors tell the parents that the surgery should take place already Friday the week after. Many thoughts dare around inside the heads of Bjørn and Hege. They are happy about the possibilities of improvement, but at the same time they are excited and anxious.
It’s a big and comprehensive operation Niklas is going through, and of course it’s scary to think that surgeons must remove half his brain.
That is; The brain is not physically removed, but all links to the left hemisphere must be removed.
Then the sick half will gradually disappear by itself, as the disease consumes it. Hege and Bjørn must prepare for a new life after surgery.
All functions associated with the left hemisphere will naturally be gone. For example, the talk center is here. Your boy will therefore wake up without language.
Fortunately, the body is a wonderful instrument, and the right brain will gradually take over the tasks that the left half had.
Hippocampus is the most important area in the brain for memory, and it is one place in the brain where most new brain cells are formed. Physical exercise has a positive effect on the brain. Animal experiments show that exercise contributes to the recovery of brain cells.
If everything goes according to plan.
In the weeks around the operation, Dad does not manage to sleep. He feels like a 70-year-old, and even thinks he looks like that too. The big day comes.
Friday 18th. January. Rikshospitalet, Oslo University Hospital. This is the first time this type of operation is being carried out on Norwegian soil. A Swedish surgeon and expert is collected and brings two Norwegian doctors to assist and observe.
Just over 11 o’clock Niklas is taken into the operating room. Almost nine hours later, the door opens. Hege sees the three doctors walking next to each other. She sees that they smile. Hege breathes out. A mother’s heart beats a little easier.
Father’s Heart, like:
«Operation completed. We are informed that it was successful. You are a real, brave soldier, Niklas. Love you, “says Bjørn on the Facebook page Niklas’ hopeful hemisphere, which he created a few months in advance.
A winter, spring and summer have passed, the fall has also said thank you and a new winter has come when we knock on the door at Bjørn in the spacious looking apartment.
Hege has come to join the interview. Big brother Daniel (11) goes so far to say goodbye before he goes back to his friends again.
– Police and robber! cries Niklas inadmissible.
Nothing hit when Lovise and Emil came to the world
Julia (4) just smiles. Niklas will be robber and laughs loudly and delighted every time the hunt begins. The photographer takes the first police act, while the undersigned takes over when her breath no longer stretches.
In the post-operation period, he has undergone rehabilitation and exercise at Sunnaa Hospital.
The right leg hangs a bit while walking, and the right arm he will never be able to use, but Niklas is solution-oriented and still finds new methods to meet the challenges that appear. It is also no exaggeration to say that the progress after surgery has been fantastic and has taken place at a high pace.
– There was a lot of excitement associated with the operation. Would they manage to cut all links so that the attacks did not return? How would the consequences be in the long run? Actually, we did not think so much about the future. It happened so much all the time that we had to take one day at a time, reminding the parents.
Bjørn describes the situation strikingly:
– There was so much he had to learn again, such as the language. It was like getting a baby, just that the development went 100 times faster!
As time passed and no complications occurred, they lowered their shoulders.
Gaute (10) eventually confirmed MS
– Everything has gone so well! We have no major concerns now. I’m never thinking about the disease anymore. Do you? Ask Bjorn in the direction of Hege, who shakes his head.
In the autumn Niklas started at school. It’s terrific.
– We have been open about the disease and we all feel that everybody is caring. Niklas is one of the gangs and has had good friends. “Niklas is deadly, he”, I heard one of the little older boys say, tells father and smile well.
– In the meantime, one thinks how it will be in the future when he grows up and even understands that he is different. Would he like to get his boyfriend for example? wondering Bjørn.
– We’ll get it a bit as it gets, it’s going well, says Hege.
“Should we try to operate, or shall we let him die?”
– Yes, he is a minded person. That’s the most important thing. I think it will be fine. Already at birth, I said there was something special about this boy, Dad says, smiling.
While the article is being completed, there will be a news update about Niklas on Facebook.
There he is wrapped in smile, gift paper and a big green balloon in the background, accompanied by the text that Dad Bjørn has written:
“Congratulations with the day, Niklas. There are six candles on your cake today. Have fun today. I am so proud of you. »
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