How measles can change a life

Ruediger Schoenbohm

Ruediger Schoenbohm

January 31st, 2013

Ruediger Schoenbohm
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‘A father’s story of pain and loss, and a plea for prevention’

Ruediger2In the early 1990s we lived in Berlin, Germany. We were young and full of plans for the future. My wife Anke was working as a nurse and I had just started my professional career as an engineer. We became a little family when Julian, our older son, was born in the spring of 1992. We built our “nest”, had great friends and neighbours, and simply enjoyed life as a young family.

As most parents probably are, we were very grateful and thankful. Two years later, during the summer of 1994, our second child, Maximilian, saw the light of day and made our family happiness complete. Back then, we had not the slightest idea of how dramatically our lives would change some years later.

Max turned out to be a blessing and a challenge at the same time: he was so full of energy and life that it was sometimes hard to keep him under control. But he was very charming, even as a baby. He won the hearts of the people around him in no time.

Max in 2005

Max_Hockey_2005

When he got sick in the winter of 1994/1995, we were a bit worried because of his young age. After all, he was only six months old when measles hit him badly. It had been way too early for vaccination, but not too early for infection. He spent several days with a high fever while his paediatrician feared that he would develop some sort of complications. And he did: his lungs got affected, he developed a dry cough, and sometimes he even had difficulties breathing. We were concerned, but had no clue and nobody had ever mentioned anything about potentially fatal measles complications.

After a few weeks everything was over. Max had recovered and as spring came around, the vivid, high-energy boy was back. What we did not know back then was that he would only stay with us for another 10 years.

When Max was in third grade of elementary school his performance in math suddenly dropped.

Initially we thought that it might have to do with his high energy level and his difficulty concentrating sometimes. But then he started showing some strange behaviours – only for short moments, but becoming more frequent. We did not realise that these were the first signs…

In October of 2004 the first seizure occurred. Max would stop doing anything – from one second to the other – he would sit and stare. Just for a few seconds or sometimes a minute. When the seizure was over, he could not remember anything. We learned that this kind of seizure is called ‘absence’.

The doctors told us that sometimes children would develop this kind of epilepsy when they were just about to enter puberty. So we thought that maybe it would be temporary and eventually go away. But there was a bad sign: Max’s EEG that was taken shortly after his first seizure was entirely abnormal. There were curve patterns that did not belong there. The doctors tried to control the seizures by a special mix of anticonvulsants. And actually it did help – for a few weeks.

Between December of 2004 and February of 2005 our beloved boy seemed to be back. We thought that finally we had everything under control and that the seizures would eventually go away. We didn’t worry about him not going to school anymore, because he couldn’t keep up with the lessons.

We ignored the fact that he could not remember things that had just happened a few hours before.

We ignored the fact that his behaviour became more…We just didn’t want to realise what was happening.

The seizures came back in March. Heavy, frequent and different. The doctors sent us to one of the best epilepsy centres in Germany at Kehl-Kork. They only needed a few examinations to confirm the worst suspicions: Max was diagnosed with SSPE, Subacute Sclerosing Panencephalitis, a late complication of an early age measles disease. Rare, but fatal – in any case, without exception.

It was very hard for us to realise that they were talking about our bright, happy, vivid 10-year-old boy.

We were numb, desperate, did not understand that the doctors were telling us that we would lose our child – no matter what, just a matter of when.

We fought hard for a long time. We spent nights on the internet seeking for rescue, for some sort of treatment that would stop us from going down the path of the inevitable. We established contacts with medical scientists in India, Turkey and the US. We imported homeopathic medicine from India; we applied ß-interferon, vitamins, fish oil, minerals – all the good stuff.

But fate sometimes is relentless: in April of 2006 our boy said good-bye forever. An unexpected thrust of brain inflammation put him into a vegetative state. Within only hours he lost everything he had learned during his young life. His last words were: “I don’t know who you are”. It’s going to haunt us for the rest of our lives.

The following years were characterised by despair, disbelief, unrealistic hope, and many illusions, by anger, and by a very slow process of realising that he will never come back. But above all, there was and still is the everlasting daily struggle to somehow survive as a family. After all, Max’s brother

Julian had just turned 12 when our family was hit by this tragedy. Didn’t at least he deserve to spend his teenage years in an environment that provided as much normality as possible?

Max in 2012

Max_Wheelchair

Today – at the age of 18 – Maximilian is still with us. His condition has slowly, but steadily worsened over the years. He can no longer sit or hold his head up. After all those years in which he could at least be fed like a baby, his chewing and swallowing capabilities have lately ceased significantly. His body temperature regulation is unstable; he has many seizures, unpredictable, sometimes strong, sometimes barely noticeable. We feed him by a stomach tube and carry him around in his wheel chair. His level of reaction to his environment varies from little to none. When a day is exceptionally good, he would laugh at Mom or Dad, or his brother, or his nurse when they caress him and talk to him.

Max will die. Nobody knows when or how, but it is inevitable. And we have no idea, if and how we as a family are going to survive this… But what drives us crazy is the fact that all of this could have been avoided, had obligatory vaccination protected more children from getting infected by measles and other dangerous “childhood” diseases.

The measles virus is extremely dangerous. Thousands of children around the world suffer from acute complications such as heart problems, deafness, eye infection, meningitis, hepatitis, bronchitis, Krupp cough, and of course the rare ones like infections of the optic nerve or SSPE.

Other severe diseases such as pox, plague, or poliomyelitis are almost eliminated on this planet, because better hygiene and protection by vaccination has successfully pushed back those infections.

So why don’t we learn? Isn’t it a shame for a developed country like Germany that measles are still an issue?

When it comes to vaccination, parents are not responsible for their own children only – their decision pro or against vaccination may have a significant impact on others! There are proven cases of babies being infected by measles while sitting in a pediatrician’s waiting room. Isn’t that cynical? One of these children died a year ago, from SSPE.

Looking back and considering how life could have been is hurtful. Max did not deserve what has happened to him. It is almost unbearable to accept the fact that under different circumstances or if we had lived in another country back at that time our child would most likely still be healthy. We have lost him forever and it is breaking our hearts. Only in our memories we still see him and he makes us smile. Sometimes the thought of him is choking us. We do not know how long Max will still stay with us, but we will care for him until the end.

*Editor’s update: It is with sadness that we report the death of Max in February 2014*

Comments

  1. Rahul

    Rahul

    April 16th, 2018

    My little boy of 6 year old is currently in ICU with Fulminant version of SSPE. In 6 weeks he has gone from vibrant and bright kid to nearly unknown muted kid, under continued seizures. I’m living the pain. He was vaccinated and never had measles. I hope humanity wins over the disease and I hope Arnav (my son) succeeds the quest in some way.

    • Gary Finnegan

      Gary Finnegan

      May 3rd, 2018

      Rahul, I’m so sorry to hear this. Wishing you the very best.

  2. andrea

    andrea

    May 20th, 2018

    My baby got measles recently coukd it mean he will get sspe someday??or having measles when ur baby means u will automatically get sspe someday??sorry if my english not so fluent im frm philippines

    • Gary Finnegan

      Gary Finnegan

      July 11th, 2018

      SSPE is very rare. If your baby has recovered already, they should be fine. Check with your doctor if in doubt.

      • LynneB

        LynneB

        November 16th, 2018

        Gary, SSPE is very rare, but a baby having recovered from measles doesn’t automatically mean they will not have it. If you read this article properly, Max had measles as a baby, and was then fine for almost ten years.

    • LynneB

      LynneB

      November 16th, 2018

      andrea, the risk of SSPE from having had measles as a baby appears to be about 1 in 500.

      It is possible. But the odds are still very much in your favour.

  3. Oliver Arzate

    Oliver Arzate

    June 25th, 2018

    Fantastic website. A lot of helpful information here. I am sending it to several friends ans also sharing in delicious. And of course, thanks on your sweat!

  4. Susan LaDuke

    Susan LaDuke

    August 15th, 2018

    As a nurse, living in the USA, it infuriates me that many parents continue to be irresponsible regarding their children and vaccines. This is more often the case with homeschooled children who bypass the public school laws regarding mandatory vaccinations.
    I’ve just read an article about 107 cases of measles since the start of 2018, in 21 different states. The continued lies about childhood vaccines causing autism are just absurd. Measles is an incredibly contagious disease that results in many complications. If only more parents would understand the severity of the disease and do whatever’s necessary to protect their children as well as others.
    Thank you for this important, yet sad story. This is the reality of measles.

  5. Pam Pinney

    Pam Pinney

    November 14th, 2018

    So sorry for your lost. Max sounds like he was a wonder child.
    I too, had the German measles in 1962, a year prior to the first vaccinations given in the US. I went from a happy 18 month toddler to a crying, scared-overwhelmed toddler. My mother referred to it has having depression (who knew a toddler can have depression?)
    While I have been lucky to survive the virus and the minor side effects, it was with sadness to read about another family whose toddler’s high fever cause her to have seizures and decreases mental abilities to an early death just like your son.
    Too off the medical community doesn’t take seriously the parents concerns when they say “I know there is something not right” with their child.
    I wish you and your family all the healing and peace.

  6. thomas janice

    thomas janice

    November 22nd, 2018

    My son is 13 and has been diagnosed with a rare form absence status epilepsy. His seizures show no symptoms until the seizure has lasted for hours! The only warning we had was he started acting only tired at first then gradually he started acting confused and from there for 24 hours he didn’t know what year it was, where he went to school, or even what grade he was in etc. his motors skills were perfect and he talked to everyone normal the entire time, he just couldn’t answer certain questions. The hospital kept him overnight and gave him fluids and in 24 hours he slowly started remembering and they said he was good and sent us home. We know now that he was having a constant seizure the ENTIRE TIME of his confusion! Almost 3 months later he begins having the same symptoms when I woke him up for his 2nd day of school. we are sent for an EEG, which revealed at 10 am he was actually having what the neurologist referred to as the worst EEG he had seen) we then were sent to a different children’s hospital where they observed him until 8:00pm, all this time my son passes every test, he is talking and his motor skills are completely normal! They finally begin his EEG around 9:00pm. It reveals he is still in seizure! They are blown away. Say they have never seen an absence case like his and they quickly gave him a big dose of adavan which immediately stops the seizure and he is able to regain his memory immediately. Does anyone have a child who has these same symptoms? His neuro doctor ordered a brain glucose test, but when we went for a follow up last week they said the test had been canceled and they had no idea what happened? When I asked if they were going to draw his blood and re do the test, they said that his medicine was controlling the seizures so far so they didn’t feel the need to do the test! I need advice and some direction. I searched further; visited epilepsy websites, blogs. I find info about someone having the same symptoms. I was really determined. Fortunately for me, I stumbled on a testimony of someone who had epilepsy for several years and was cured through Herbal medication. I read awesome stories of people whose condition were worse. I was not a fan of Herbal Medication, because I once believed that they have not researched it enough. But due to numerous testimonies I was more than willing to try it…. I contacted the doctor, and my son used the herbal medication. It became a miracle for my son free from rare form absence status epilepsy within 3 months. The herbal medication worked without any trace of side effects on my son…. totally free. I decided to share my son story to tell people out there, that there is a hope for those with epilepsy using herbal medicine, and anyone who suffers from seizures can be cured.
    Contact him: Dr.lawson52@ gmail. com
    Call him: (979) 341-0215

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