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. Anonymous

    Anonymous

    November 14th, 2013

    What about all the children out there who have been vaccinated and have now lost normality, ex: autistic. They didn’t deserve it. And it has now been proven that MMR vaccine is the cause. I think the measles vaccine is fine (single vaccines), it’s the other junk that they’re putting in these vaccines that are messing with these little childrens’ minds. Be careful, these are your children and you will be held accountable. Plus who will there be to take over when you’re gone?

    • Caitlin

      Caitlin

      November 14th, 2013

      It has not been proven that the MMR vaccine is the cause of Autism!! That study was made up and the author (now Mr. Wakefield) has lost his medical license BECAUSE he admitted he made up his study results! MMR DOES NOT CAUSE AUTISM!

    • Anonymous

      Anonymous

      November 14th, 2013

      There is no connection or proof that any Vaccination causes autism. There is no legit study to prove this in any sort of way. When you choose not to vaccinate your child, you are putting other children in danger. Especially those who are too young to be vaccinated. We live in a world now where these things are available to us. We have the technology to eradicate many dangerous illnesses. If you would get your head out of your nether regions you would realize that.

    • Illryia

      Illryia

      November 16th, 2013

      There is no evidence that vaccines cause autism. Indeed, after some greedy doctor released a fraudulent study some years back lots of people have tried to prove the link and every one of them have failed. What a shame that your anti vaccination agenda closes your mind to the horrendously tragic story above and how easily it could have been prevented had he not caught measles.

  2. There really is no proof there is such a thing as a slow virus and that measles virus actually does this (also there are reports of this after measles vaccine) . I’m so sorry for this boy but to use this to scare you into measles vaccine is pretty bad.

    His first big opportunity to take a crack at slow viruses came at the end of the 1960s. Subacute sclerosing panencephalitis (SSPE), a mouthful of a name for such a rare condition, attacks a small number of schoolchildren and teenagers each year, causing dementia, learning disabilities, and finally death. Doctors first recognized SSPE in the 1930s, and by the 1960s the virus hunters were searching for an SSPE germ. At that time, the most fashionable viruses for research belonged to the myxovirus family, which included the viruses that caused influenza, measles, and mumps. Animal virologists therefore started by probing for signs of myxoviruses. Excitement mounted after trace quantities of measles virus were detected in the brains of SSPE patients, and in 1967 most of the victims were found to have antibodies against measles. The facts that SSPE affected only one of every million measles–infected people and that this rare condition appeared from one to ten years after infection by measles were no longer a problem: Researchers simply hypothesized a one- to ten-year latency period. Little wonder they could also easily rationalize that one virus could cause two totally different diseases.
    http://www.whale.to/vaccine/slow_viruses.html
    About 1/2 way down talks about the insanity of relating SSPE to measles virus. This is a great article showing how real the whole issue of viruses is and how baseless the issue of vaccines for so-called viral illnesses are. This will blow your mind! Similar to what they said about so-called AIDS

    http://www.whale.to/vaccines/sspe1.html

    http://www.whale.to/a/sspe_h.html

    http://www.cibtech.org/J%20Medical%20Case%20Reports/PUBLICATIONS/2013/Vol_2_No_1/10-012..Apratim…An..SSPE…Vaccination…30-33.pdf

    • Illryia

      Illryia

      November 16th, 2013

      Sorry, but using whale.to as evidence on this subject is unacceptable. It is a well known dishonest anti vaccination website that is run by a farmer without medical or scientific background. All the information on whale.to has been debunked many times over.

    • Sue

      Sue

      March 2nd, 2014

      There is really no such thing as homeopathy having any beneficial effect beyond placebo. The only reassuring thing is that this person is no longer a registered nurse.

    • Andy

      Andy

      March 2nd, 2014

      whale.to also claims the world is controlled by lizard people. It even offers photos as evidence that world leaders are really shape-shifting reptilian aliens. Hardly the place I’d be doing research on serious issues relating to potentially fatal diseases. But then, I’m not a homeopath.

    • Illryia

      Illryia

      November 16th, 2013

      Sheri, I note you have not disclosed your vested financial interest in people not vaccinating. What are you trying to hide?

    • Illryia

      Illryia

      November 16th, 2013

      One unvalidated article is not evidence, it’s merely cause for further investigation which when done shows that sometimes measles is so mild people don’t know they’ve had it.

  3. Think

    Think

    November 14th, 2013

    Really? I’m very sorry about what happened to your child, but in all fairness, even with a measles vaccine this outcome still could have happened. Vaccines are NOT 100% and you really shouldn’t believe everything you see or hear for those of you saying the outbreaks are caused by the unvaccinated. The outbreak in Alberta, 8 of the 12 infected people were vaccinated, the other 4 were not. How do you justify injecting tiny little babies with live diseases, sometimes 5 in one sitting, and harmful substances they don’t even allow in food? Do your research people. If I don’t get my child vaccinated, it should have no affect on your vaccinated child. Yours is protected correct? I seriously doubt someone is going to bring their whooping cough positive kid to your house after you’ve given birth.

    • Caitlin

      Caitlin

      November 14th, 2013

      But your unvaccinated child DOES have an effect on my vaccinated child. Because vaccines are not 100 % successful, but they are the best thing we have to prevent these diseases. So, if your child gets Measles, they can pass it to my child, even though mine’s been vaccinated, and then we get outbreaks, like the one happening in Alberta right now! The idea behind vaccination is to protect the herd, meaning that the fewer people that are in theory able to contract it protect those who the vaccines didn’t work in.
      Also, you don’t need to bring someone who has pertussis to visit my new baby in order for my baby to get it. If whooping cough is around, the virus can be carried, like any other virus, even by a vaccinated person to my house and infect my baby.

      • Denise

        Denise

        November 14th, 2013

        Caitlin,
        You are absolutely right. Herd immunity only works if the majority of the population has been vaccinated. The vaccine is not 100% effective, but if most people are vaccinated you are NOT going to get large numbers of people coming down with the measles as the vaccine IS very effective. If you are not vaccinated you can almost be sure you will get it. I live in a place in Canada….see reference above by Laura. There is a very large population of people who don’t vaccinate for religious reasons. I am not sure what God would think of people putting their child and every other person they come in contact with at risk. They are the population now spreading the disease as “voluntary isolation” is not working. My grand daughter is less than 6 months old and thus is very much at risk of contacting the disease, just like Max did. My heart goes out to his family. You don’t vaccinate your child, it should be the law they don’t go to school in Alberta or anywhere for that matter. It is science based that vaccinations do work, but you NEED herd immunity for it to be effective. People get your heads out of where ever you left them and vaccinate your kids.

    • Illryia

      Illryia

      November 16th, 2013

      I have been unable to find a single instance where a child fully vaccinated against MMR has been diagnosed with SSPE. I think there is a huge distance between possibility and probability and your offensive disregard of their suffering to ply your agenda is offensive and inappropriate. In NSW (Australia) 1 of the 69 infected patients was fully vaccinated so I’d like to see your evidence regarding the outbreak in Alberta. I note that you used the term “vaccinated” rather than “fully vaccinated”, is that a standard anti vaccination deception given that the children need 2 doses to be “fully vaccinated”.

      Your research is flawed and statements deliberately emotive to fear monger. If you had truly researched the subject, you wouldn’t make half statements. I justify vaccinating my children to keep them protected against diseases that can maim and, as indicated above, kill in the most horrendous of ways. I have done my research, but unlike you did not rely on anti vaccination websites.

      Sure, my child is protected against your poor decisions, but the kids who are babies and who are immunocompromised are at the mercy of your poor decisions. In NSW (Australia) 2 parents took their pertussis positive children to a childcare centre where a 3 week old baby (visiting to collect an older sibling) was infected and later died. So it most certainly does happen.

    • Anonymous

      Anonymous

      May 3rd, 2014

      Your ignorance is astounding …you should do your research..live virus is never used. All studies linking mmr to autism have been debunked by authentic scientists in the medical field. Misinformed self serving people like you are dangerous…do your research

    • Debbie

      Debbie

      January 30th, 2015

      Infants don’t need to catch whooping cough from infected children, they are more likely to catch it from infected adults. Whooping cough is not so severe in a healthy adult. We can have it and not even know it, but we can pass it on to a baby. When my granddaughter was born 4 years ago, my husband and I, my mom, and my 2 sisters got the vaccination to make sure none of us unwittingly infected the baby with this deadly illness. It also includes a tetanus shot. Bonus.

  4. mike

    mike

    November 14th, 2013

    having to get vaccinated by law is not democracy and fails to stop the govt from implementing any health program in “their” interest. pro choice.

    • Anonymous

      Anonymous

      November 15th, 2013

      You right Mike. It isn’t a democratic society if we are told we have to vaccinate. But if you choose not to vaccinate at least make an informed, intelligent decision based on real evidence based facts rather than speculation and what you read on google.

    • Linda Whyard

      Linda Whyard

      November 15th, 2013

      If you don’t immunize your child/children for diseases that are proven to be effectively controlled by immunization your medical costs for anything associated with any treatment for the illness should not be covered by any insurance policies.

  5. Bev

    Bev

    November 14th, 2013

    So sorry for your loss dear family. But others beware. What about all the little infants that got measles at an early age and haven’t suffered problematic minds? And what about all those little ones who received the multi vaccines and have problematic minds ex: they call it autism? These didn’t deserve it either. It has now been proven that the MMR vaccine can cause autism, they are actually but quietly admitting to it. I think single vaccines wouldn’t be as hard on the little ones compared to the multi ones. Plus it’s all the other crap they put in the vaccines to preserve them that causes a lot of digestive intolerance, thus causing toxic blood to flow through the brain. So be careful, blaming others is not where it’s at. And forcing is not where it’s at. Your decision is where it’s at. If you go for it, you did it because you feel your child is now safe from the disease and you need not worry or condemn those who decided otherwise.

    There are those of us who have lung cancer and never smoked a day in our lives, and we can blame those who smoked in our environment, but what would it help…people still smoke in our environment regardless of a law. And many a child has a disease because of it too.

    So remember, you will be held responsible for your decisions for your children and yourself, God will see to it . You will not be held responsible for someone else’s decisions for their children and themselves. Don’t put yourself in a position where you will be to blame or you will blame others. God sees all and He will see to it that justice is served, and it will all be done in love because God is love.

    • Anonymous

      Anonymous

      November 14th, 2013

      The “clinical trial” and “doctor” that undertook and published the study that “proved” the vaccine “caused” autism has been discredited, the physicians license revoked and exposed as a 100% fraud and embarrassment. He made up the data. He made up the cases. It was a fraud and people like Jenny macarthy believe and propagate the lies. There is a reason that doctors and researchers guide the course of modern medicine rather than celebrity b list actresses and the Internet. Please ask a real doctor not dr. Google.

    • LW

      LW

      November 15th, 2013

      Bingo! was waiting for that word to come up….BLAME. Quite frankly I feel that most people with an autistic child are more than willing to jump on that now refuted bandwagon which stated vaccines, in particular MMR caused autism and blame it for their child’s condition as well. Problem is, they don’t realize that long ago study was refuted when the Dr who did it admitted he fudged it!

      I’ve spent a life time working with children with problems and if there is one thing I’ve learned it is that parents love to play the blame game. It doesn’t matter if it is autism, hearing problems, mental illness whatever. I swear it makes them feel better to say it is someone else’s or something else’s fault. But why does anyone have to be to blame?? Some things just happen and we’ll never know how or why. I think people blame because they fear the fact that there is something ‘wrong’ with their child reflects on them as a parent somehow.

      I would never say with 100% certainty that a vaccine could not cause autism or any other problems but this one has been researched well at this point and disproven. Not to mention the disaster created by this schmuck of a Dr. who fudged his research – was it the post below this one that outlined what happened after his research went public? How about the outbreaks that occur in areas where a good deal of the population is against vaccination?? Good lord, is there any other proof necessary to convince people vaccinations ARE necessary!

      Realistically, the risk of autism vs. the risk of life threatening disease and a life time of medical issues from NOT vaccinating I’d say autism is pretty low risk, let alone the very really concern that you are NOT making a choice just for your child but for an entire community…its a no-brainer, vaccinate!! So many of these diseases would be eradicated if we all did and then there would be no risk of any kind for anyone! Is that not why Polio is no longer a concern?

    • Illryia

      Illryia

      November 16th, 2013

      Beware of what Bev? The misinformation spread by people? I agree. Those little infants who get measles with no side effects are the lucky ones. Over 150,000 children still die every year as a direct result of measles. It is not a benign childhood disease, it kills.

      Those children who are vaccinate and who have autism are in exactly the same position as those who were not vaccinated and have autism. It has certainly not been proven that MMR causes autism. What about people who lie Bev?

      In Japan they tend to over react and they removed the MMR at the height of the Wakefield fraud, and they introduced single shot vaccination. On a study of 300,000 children (299,988 more than Wakefield studied) they found that the removal of the MMR and introduction of the single shot vaccines had no impact at all on the instance of autism in Japan.

      Ah, I see your veneer of ‘legitimacy’ flushes down the toilet and you fall into the standard anti vaccination lies of ‘toxins’ and ‘crap’ with regards to vaccination. Dishonest emotive words designed to fear monger, which have no basis in fact. Of course we can judge people who lie and cheat.

      Smoking is an interesting example that you give, given it disproves your point. The damage caused by cigarettes was unknown, but science has made it known and steps have been put in place to protect those who don’t smoke, and they are enforceable. People do not still smoke in our environments where it is banned, at least where I live.

      I’m not interested in waiting until a fictional deity holds people accountable. I’d rather save the children before it gets to that. Many people live every day with the end results of the actions of other people. My brother is dead because someone in a hospital passed diphtheria into the nursery.

      Personal responsibility is an interesting concept, perhaps you can educate yourself on it ?

  6. Danni

    Danni

    November 14th, 2013

    First off I am so sorry for what’s happening to your family.
    Quote from Wikipedia “The claims in Wakefield’s 1998 The Lancet article were widely reported;[14] vaccination rates in the UK and Ireland dropped sharply,[15] which was followed by significantly increased incidence of measles and mumps, resulting in deaths and severe and permanent injuries.[16] Physicians, medical journals, and editors[17][18][19][20][21] have described Wakefield’s actions as fraudulent and tied them to epidemics and deaths,[22][23] and a 2011 journal article described the vaccine-autism connection as “the most damaging medical hoax of the last 100 years”.[24]”

    Maybe people should stop reading what’s on the internet and start speaking to their doctors. I believe that everyone has the right to make their own choice but I also believe that the govn’t needs to step in and make a stand. If a parent wants to be exempt than they should have a note from a doctor agreeing with them

  7. Karen

    Karen

    November 14th, 2013

    I am so sorry forty for your loss!
    I am 52 and reacted badly to all the immunizations when I was young. My parents were told I couldn’t have vaccines. When I was in my 30s I had a surgery that had complications and I needed blood transfusions. Through these blood transfusions I am happily now protected for all the illnesses that I was unable to be immunized for.
    There was a silver lining for an unfortunate situation for me.

  8. Cathy

    Cathy

    November 14th, 2013

    Shame on the lot of you for taking an opportunity to tout your anti-vaccinations on this man’s post. He’s obviously been given his information by doctors and his wife is a nurse. These people have more access to professional information than the people who educate themselves on Google.

    The risks of adverse reaction to vaccination for the many clearly outweigh what these diseases do to our children.

    I would really love to see the statistics of all the autism cases linked from, let’s say 1960 vaccinations to today. Because if there is a direct correlation – the numbers should prove it.

    Let’s look at a different analogy:

    Seatbelts save lives. Everyone should wear a seatbelt. But wait, there are a few cases where wearing a seatbelt didn’t save their life. Perhaps people should choose to stop wearing seatbelts because a couple people had an adverse reaction to them. So if you think you’re protecting your child, take their seatbelt off and you can 100% guarantee that your child won’t have an adverse reaction to seatbelts.

    Maybe a big bad like polio needs to come back to remind people that the slight chance of a reaction is FAR PREFERABLE to the deadly disease.

    • Denise

      Denise

      November 15th, 2013

      Amen Cathy….a wonderful analogy!

    • keith Kelley

      keith Kelley

      March 2nd, 2014

      Cathy i believe people are just trying to get the truth out about vaccines.

      Many a time I have seen pro vaxxers severely criticize a mother who does not vaccinate. And if they have lost a child through the effects of vaccines it usually means little to the attacker/critic.
      That’s what i call shameful.

    • Andy

      Andy

      March 2nd, 2014

      It would also surprise some people to know that the vast majority of people who die in motor vehicle accidents are wearing a seat belt. That’s not because seat belts don’t work, it just the way statistics work in our imperfect world. I am always amazed when people who oppose vaccinations don’t also oppose seat belts.

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