13 Nov 11

On Nov 12 we were invited to Frank Elstner's TV Show "Menschen der Woche"
in Baden-Baden.

It was about Maxi's sad story and how we generally go about childhood diseases
and vaccination. The clip was broadcasted on Saturday, 10.10 pm CET on Ger-
man TV channel SWR.  Video recordings can be found here. 

7 Nov 2011

On November 1^st, one of the main German TV channels, ZDF, visited us and
filmed a report about Max. It was screened today on the TV program WiSo.
You can watch or download the link to the report here.

21 Oct 2011

A couple of days ago, Natalie, a 13-year old girl who fell ill with SSPE some
years after Max, died. She had to go before her life even really began. She had
fought for three and a half years, and like all the others so far... lost the battle
in the end.

Our deepest thoughts are with her parents Anka und Günter, and of course her
little brother Dennis who didn’t even get to know his big sister properly.

We wish all three of them lots of strength and solidarity in these difficult times,
even though nothing will be the same as before. We too will one day reach this
point, and we fear this moment...

There is currently a lot of reporting in German media on vaccination and measles.
Please check out the links at media & info.

19 Oct 2011

It’s been quite a while since we told you on Max’s website how he is doing.
Many dear readers, and we hope that there will be some new readers too, are
following his fate, which could have all been avoided so easily.

Next month it will be seven years since Max stepped into a different world. He
had no choice though... he was too young to be given the vaccination that could
have prevented him from this horrible disease.

Now back to Max: his condition hasn’t really changed very much. There are times
where he is pretty much okay and where he reacts to outside influences.
At times like this we really think that he does take in a lot and recognizes some
things from the past, such as his grandma, to whose voice he reacted with hearty
laughter when she visited us after a long time.

August 20, 2011

Maxi really enjoyed this year's warm and long summer. The new pool in our garden was good for him, even though he needed almost 30 degrees centigrade warm water in order not to freeze. . It is hard to lift him into the pool, and it takes at least two people to get him in and out. However, once he is in the water he becomes light as a feather, and with his life-jacket we don’t need to worry about him slipping over and his head going under water.

However, there is another side of the story... there are also times when he hardly
eats, just sleeps all the time and hardly reacts. After a long time we had to start
feeding him through a tube again. This is when our fear returns, about whether
this is the beginning of the end. Up to now he has always recovered and so far
the feared next unavoidable step downwards hasn’t happened.

The worst thing is that his epileptic seizures have returned, which happen all
the time during the day. There are also huge, strong fits when Max’s body seems
to be remote controlled. His face twitches in all directions, he goes white, his lips
turn blue and he just doesn’t breathe. These moments are so cruel and it feels as
if time stands still, especially at night.

Luckily Max usually recovers on his own, and we only had to administer the
emergency medicine a few times, which so far has always helped. Yet our fear
and worries that one day the medicine just won’t work anymore are always there
and remain permanent features in our lives.

25 Dec 2009

Yesterday was Christmas Eve. It’s now the fifth time that we celebrate Christmas with
our very ill boy. When it all began in the winter of 2004/5, we had no idea really what
was coming for him and to us as a family in the years that followed. Perhaps just as well...

They were terrible years, above all 2005 und 2006, when it became obvious that the crash
was unstoppable, and Maxi would turn from lively, bright boy into a waking coma patient.
 
He is still like that today, even if his body has continued developing completely normally,
not influenced by the illness at all. Maxi is on the way to becoming a man. Meanwhile,
he is as tall as his mom and weighs more than 50 kg. That makes it more difficult to look
after him, but thanks to our excellent nurses and with our new house’s suitable-for-special-needs design it’s easier to manage.

Maxi’s state of health has changed little in the last few months. There are days when he
is totally awake, fit and also reacts every so often to what is going on around him. Then
there are days again in which he is really tired and drowsy and shows almost no reaction.

Unfortunately there are still days with very many epileptic seizures. Included in these
seizures are times where he simply stops breathing. It just happens for no reason and
without prior warning. Then it’s terrible seeing his face going blue and you can only hope
that he suddenly takes in enough air and starts breathing again.

His love of food has not changed much. Sausages are still the best! Going for walks,
listening to stories, swimming at school…these are all things that he likes to do.

But what he likes best is if there’s lots going on: loud music, children running around
near him, singing, laughing, dancing…most of the time he smiles too. 

He also enjoys a good cuddle. Just like when he was still healthy. Maybe even a little more
of his old self will come back and he’ll recognize where he is and where he belongs.


19 July 09

Many weeks and months have gone by again and we still haven’t had time to update the
website, so we’d like to give you a proper update now, a week before Maxi’s 15^th 
birthday on July 25.

11 Jan 2009

Little has changed in Maxi's condition over the past half year. During the long and cold winter months his condition has been relatively stable with only a few severe seizures. Most of the times his breathing was not affected. He still enjoys being outside for long walks. He shows significant reaction to voices and sounds, wind and sunlight. However, when there is too much of it, he clearly signals this by raising his voice in a "claim".

Max is still going to school at Markgröningen, accompanied by a nurse.

He really likes it there, at least it seems so. There is a lot of variety and also a lot of therapy,
which does him good. He enjoys the swimming lessons most of all. You always notice the
difference, compared to the school holidays, when you can not do much at home, simply
because you do not have the resources.

The other children are very important to him, just as it used to be. He reacts to music or other
loud actions and it looks as if he likes the things going on around him.

As we reported in an earlier blog, at the end of February 2009 there was another SSPE
seminar in Istanbul, Turkey. An intensive exchange on the subject of SSPE took place between
doctors, scientists and parents at what was clearly a bigger and scientifically more ambitious
seminar than the one in September 2007.

Although the sessions were very interesting and also a couple of new points were raised,
the summing up was rather sobering however: there is currently no cure for SSPE, at the
very best a prolonging of the inevitable, in individual cases over many years too...:-((

We will post the presentations and documents online as soon as we get permission granted
(this hasn’t happened yet).

At the beginning of June Maxi´s condition started to deteriorate: he started having frequent
seizures again, unfortunately again where he stopped breathing. As ever, they were unexpected
and came out of nowhere. It was actually when we were often having humid weather, and with
epileptics one knows that thunder in the air also creates “thunder” in the head.

As the weather started showing more of its sunny side again though, the seizures still remained. This now meant as well: change the medication. This is unfortunately not very easy with Max, as he reacts very sensitively to change amongst other things.

Maxi in March 2009

At the moment he takes his old, tried and tested medication in a higher dosage and after
almost three weeks it seems to be helping: he’s had less fits, the tiredness has increased
as a result of the side effects though.

Now he’s often really exhausted during the day and sometimes sleeps very deeply. Not nice,
but a necessary evil. Maybe he’ll get used to it over the course of the next few weeks and the
tiredness will go back to a normal level again.

Now we all hope for nice weather so that we can celebrate Maxi´s 15^th birthday with lots of
Nürnberger sausages (which he loves to eat).

On July 4^th Stuttgarter Nachrichten newspaper printed a story about patients in a waking
coma. The editor visited us at home in order to get a personal profile of Max, the illness
and "Life in a Waking Coma".

You can read the report here.

22 Nov 2008

It has been almost five months now since we last wrote anything about Max. Apologies to all who
frequently check this site to find out about Max. We hope you understand that so many things
have happened recently and we, as a family, have had hardly any time to maintain this website.
We will do so now, and hope we’ll be able to update this page on a more regular basis!

September 6, 2008

The most important piece of news right now:  Maxi is doing pretty well! Since he has been growing and putting on weight over the past months we have been looking for a way that we will be able to care for him here at our home in the future.

There were several possibilities, including converting our home in Sachsenheim to suit special
needs purposes. After a lot of thinking, planning and calculations, the most sensible solution
was: build a new house, suited to our life situation, so that we can have Max here with us for a
very long time, as long as possible.

We were lucky:  it took quite a long time, but finally we found a site where we could create
everything important we thought would be necessary for Max, for us as a family and our future
together: as much space on one level as possible, no steep stairs or narrow corridors, without
barriers and so on. We found a lovely and quiet piece of earth on the borders of Sersheim, sur-
rounded by nature.

Exactly five months after we had started building, on 11 October 2008 we were ready to move
into our new home, with the help of lovely friends and two removal vans.

Maxi's new room (Oct. 2008)

Max now has a huge room with a direct entrance to his bathroom. There’s a hoist on the ceiling with which he can be lifted from his bed and “driven” into his bathroom. This really helps with the whole caring and nursing situation. The house also has really wide doors and enough space in the living area to get everywhere with the wheelchair.

OK, and now back to Max himself and how he has been doing over the past few months since
July: he had a relatively large amount of epileptic seizures during the two weeks building up
to the removal day, and his spasms were quite often present. This was obviously due to the
uproar and changes in his daily routine.

After a week in the new home his spasms have reduced back to a “normal” level, the epileptic
seizures have reduced to four to five times a month.

What has definitely improved over the past few months is his reaction ability. He still de-
monstrates pretty obviously, even stubbornly, what he likes and what he does not like. For
example, he very often does not like to be touched on his head or face. He then makes loud
noises or just simply turns his head away.

He also makes a big distinction with his food: what he likes stays inside his mouth and is
eaten rapidly. What he does not like he lets drop out of his mouth or even keeps his mouth
shut.

His favorite thing is action: let it be loud music or just “wild” actions... just like our old Max. And, just as it always has been, he hates being on his own. The best thing for him is being cuddled, body contact seems to be really important to him. He strongly reacts to touch. When we tickle or massage him he laughs loudly and strongly, a little like he used to in former times.

Maxi in his "beanbag"

29 June 2008

Not much has changed during the past couple of weeks.

Maxi is relatively stable, however, middle of May he had a phase where more seizures,
as usual, happened without any warning. However, this time they came along with
sickness. He suddenly went pale, vomitted several times and stopped breathing again.

The loud screaming for hours at end has more or less disappeared. Whenever he makes
loud noises these days there is always a reason for that. He just communicates in his
own way and we have to learn to understand him. It was not easy to begin with, but as
time passed we learned to understand him better and are still learning more from day to
day.

Instead of screaming now Maxi bites heavily into his upper arm, even when he is wearing a
t-shirt. So we have to keep a constant eye on him that he does not hurt himelf.

When we tell him off loudly, he stops slightly. He realizes when our voices are louder and
more serious than usual.

Maxi is doing all right

For quite a while now he has been showing us clearly what he wants and what he does not like. Sometimes his "little stubborn head" can be noticed. He really likes us having a barbecue. Last time he managed to eat eight Nurem- berg sausages and he was laughing a lot. His left part of his body seems to come to life more and more. He has his left arm next to him or on top of his stomach pretty often, and sometimes both his hands are “playing“ with each other.

Dr. Oswal from India is really satisfied with Maxi’s condition, as far as he can tell from the photos.
He has confirmed that the EEC has improved during the past months. He might come to visit us
again this summer. We would be very happy if he did.

10 Apr 2008

10th of April was a day like any other day. Somehow, but then again: not. It has been a  rumour
for quite some time and we had not told Max (we still do not know how much he understands):
Alexandre Jacques, his great hockey idol, is leaving the Steelers and Bietigheim-Bissingen.

The evening before his departure, however, Alexandre came to visit Max to say good- bye.  On one hand it was rather sad, on the other hand, Alexandre was really positively surprised to see how much better Max is now than he was during his last visit in the summer of 2007.  We were really happy about this, as we do not notice changes over time so easily because we see Max every day.

Max and his Steelers idol Alexandre Jacques

When Alex had to leave he promised us: "we stay in touch...". He is such a lovely guy, we wish
him and his family all the best, and that the angel will watch over him everywhere...  he knows
what we are talking about.



12 Mar 2008

He loves being carried “piggy back“. We found that solution to carry him upstairs to his room or
to the bathroom. He is way too big and heavy now to be carried around in our arms.

Max and his tomcat Leo

Max has the most fun when his big brother comes to him. Julian only needs to say one word and he already starts laughing. Maxi’s cat Leo likes being near him again too. At night he creeps into his bed calmly and quietly and purrs really loudly.

It was always like that before ... perhaps Leo notices that Max is slowly returning.


27 Jan 2008

It has taken us a while to find the time to update Maxi’s website. A lot has happened since the beginning of the year. Many things seem to be very positive: Maxi's sitting up is getting better and better. It works best on a hard floor, but he also manages to keep his balance on the sofa or when we have him sitting on our lap and he keeps his position when you gently push him. A couple of days ago he started to turn over from his back to his side and sometimes even to his stomach, all by himself (!). So far it’s only working in one direction because his right leg is still much more active than his left one. But his left leg is becoming more and more animated too. When we tickle his feet he pulls his legs up. Both of them!

Maxi on his new "Sitting Pea"

His appetite matches that of a normal thirteen year old. We have to start making sure that he doesn’t put on too much weight though. Max weighs nearly 50 kg and is almost as tall as his mum! We’re continuing training drinking from the cup. It works best with coke, sometimes he manages two cups without much help.



16 Dec 2007

On Dec 7 the doctors did a new EEG with Max, it had been a long time since the last one. If the changes we had noticed over the last months since the summer were to have a real, medical background and not just daily form related, then there should be changes seen at the EEG. 

And then came the news that was so positive and promising: Maxi’s EEG has really changed in a positive way: the Rademecker Complexes that were constantly running through Maxi’s brain waves for more than two years have decreased massively and the time span between them is much bigger. The chaos of the remaining brain waves that showed up with every EEG since Maxi’s collapse in spring of 2006 has almost gone. Of course, Maxi’s EEG is still far from being normal, but at least typical curve shapes and basic frequencies and so on can be seen again.

All that matches his behavior and his activity. He sleeps only a little (just like any thirteen year old ;-), often only around midnight, and then he is top fit again at eight in the morning. He is really fit motorically, of course especially with his right body half, but the left side is getting better too. 

It’s interesting how his verbal communication has changed too. Up to now, there were just more or less unformed noises that he made in various pitches. In the meantime we keep getting the impression that he’s trying to form B’s and P’s and so on with his lips. Almost as if he was a baby again. Anyway, his behavior reminds us of a toddler, complaining when he doesn’t like something or when he is bored, the rejection of food he doesn’t like (he shuts his lips then), or even the stomping with delight. He loves to take his t-shirt or a sheet between his teeth and pulls it. We had all that already about twelve years ago...

Max can almost sit up on his own again. We still have to hold one of his hands or stabilize his hip. When he is sitting up freely, such as without the back of a chair, he can hold his head and he stabilizes himself with his right hand.

We are really happy about the unexpected positive EEG results, something nobody would have expected in that form. Maybe the highly concentrated fish oil in combination with the other therapies is showing its effects now. We will see...


20 Nov 07

Maxi's condition has been almost stable for several weeks now, so we spontaneously decided to chance an experiment with him: take him with us to the ice arena to one of the games of his beloved Steelers.  We could not wait to see how he would react...  More than 1½ years after his near-fatal breakdown the time came: on 28 October 2007, the Steelers played a match against Kassel and Maxi was there! You can find out more about this great evening here (in German only, sorry).

Max is reacting to the Fish Oil Therapy so well that we have decided to gradually increase the dose, just as the US doctors recommended. The difficulty is that the highly concentrated EPA/DHA products are practically unavailable in Europe and have to be imported from abroad. After a direct order from the USA was confiscated at Ludwigsburg customs – even though it is declared a dietary supplement product that is commissioned in the USA – we managed to import highly concentrated fish oil from Canada with the great help of our local Sachsenheim pharmacy and Maxi’s doctor. Now we can increase the daily dose to the recommended 5000 mg EPA and 2500 mg DHA without any problems as we can feed Max the oil straight through the stomach tube (PEG), meaning Maxi won’t have to swallow 20 or more capsules per day any more.

It’s pretty obvious that Max reacts to his environment more and more, mainly by noises, laughter and calling out. Sometimes he turns his head into the direction he is interested in. We are convinced that he calls us when he is hungry. When he does not like the taste of something he spits it out or seals his mouth by pressing his lips together. 

At "school" the therapists are carrying on with cycling with the leg trainer with him. Not too long ago the movements were passive, which meant the machine provided the speed. However, Maxi’s legs were moving without using their own power. Over the past couple of days and weeks this has changed, his legs show more and more activity and he even stomps now.

Maxi and his brother Julian in Nov 2007	The strange thing is the way he holds his head. Something has changed, and again we do not know in which direction: when Max is sitting in his wheelchair his head often bends heavily down to one side, as if he had cerebral palsy. However, when we sit him on the sofa or on a chair and fixate his shoulders, he keeps his head up straight, as if everything was okay. What is going on there?
Even though his brain is not quite functioning properly yet: Max is doing very well and we are all very, very happy about that. We will continue fighting, all together!

2 Oct 2007

Maxi is doing well. He does not need to sleep that much any more, his need for sleep is almost normal. A couple of days ago he started "singing along" when he hears music. He laughs and makes lots of sounds. And he always gets this smile on his face when he is caressed, when he is spoken to, when he likes the taste of something, when the sun shines on his face or just when he realizes that we are going out to the fresh air where all the other children are ...

It is really strange and we cannot figure it out yet. A couple of weeks ago we started this new thing: there was a US report on Randall McCloy Jr., a miner who was considered practically brain dead at a mine accident at the Sago Mine in West Virginia. After several weeks of  hi-dosage EPA treatment (fish oil) he woke up from the coma and gradually recovered. A medical miracle? No one can say.
 
We got in touch with the US doctors Dr. Bailes and Dr. Sears. We wanted to know whether a high dosage EPA treatment like this could be something for Max. For some weeks now Max is getting a daily dose of approx. 2400 mg EPA  (unsaturated Omega-3 fat acids) and it seems to be very good for him.

It’s been three weeks now since Max had his last seizure. He still cannot hold his head up properly, however, he can drink again. And his right hand is grabbing his left hand. He moves both arms and legs, the spasms have become less and almost disappeared. Is this a good sign? Lots of people who have known Max for a long time have noticed the changes to the better.

Please keep your fingers crossed that it will stay like this and that it will get better and better!


14 Sep 2007

Two weeks have passed since we returned from our one week vacation to Italy. It was nice, although very different from our family trips of previous years...

On August 25, the four of us fly to Nice on the Cote d’Azur and then drive down to Diano Marina on the "floral coast" in Liguria. Even though the journey is really exhausting for Max, he still has a lot of fun. All the different noises and voices at the airport, in the streets etc make him laugh again and again.

Just before our plane departs from Stuttgart we take a quick stop at McDonald’s. The cabin and ground crew are really nice and very helpful. That makes everything much easier. On our arrival in Nice we pick up our huge rental car, big enough for us, our luggage and the wheelchair. We drive to our holiday home at Mrs Lorenza in Diano Marina, not far from the city of Imperia.

On our arrival our lovely nurse immediately cares for Max. He did not drink much on the journey, and we did not have a proper lunch while traveling. The next couple of days are spent on the beach. Max is allowed to sail on the sea in a small dinghy. He really enjoys it. He manages to keep his head straight while swaying on the waves.

Diano Marina beach

 

In the evenings, when we all sit outside in the courtyard and the other kids run and cycle around, Maxi seems to be very happy. He laughs a lot.  He also loves being wheeled across the market and around town with all its temperamental Italians.

The opening for the stomach feeding tube (PEG) in Maxi’s tummy was heavily inflamed the last couple of days at home before we set off. We had tried to make it better with the help of antibiotics and creams – unfortunately to no avail. However... nature has helped: the salty sea water has managed to completely heal up the PEG within just three days.

If only it could also heal the damage in his head…


25 July 2007

It’s Maxi's 13th birthday. Some people had doubts about whether he would even make it to that day. However, like many times during the past 2½ years of Max fighting, he has once again shown us better: he was in a really good mood and had an exciting and beautiful summer day.

At nine o’clock in the morning he is picked up for “school“ in Markgrönningen. On his arrival everybody is already very excited: today is the last school day before the summer holidays. His school mates greet Max and congratulate him. Maxi is happy and starts laughing again and again. After the big break they all clean up because next term (7th form) the class will move into a new class room. All the children are very excited today. Max loves that. Finally, they all gather around the table dressed for the party. They are singing and the children say what they wish for Max:

They wish for him to:
- stay as jolly as he is and that he will laugh as much as before
- feel well during his holiday without seizures
- come back to the class after the holidays
- get many presents

The children eat, Max manages two muffins. Around twelve o’clock, the school bell rings and the children say farewell for the next 6½ weeks.

After a nap, his dear friends from his former elementary school in Sachsenheim arrive at three o’clock: Salka, Sophie, Leif and Eric. Even Maxi’s elementary school teacher, Mrs Baur, arrives a bit later. She carries a huge sunflower. Several years ago, when Max was still healthy, he had given her a sunflower like this as a farewell present from the 4th year elementary school class.   
   

On the patio we all sit around the birthday table, Max in his wheelchair right in the middle. The children sing "Happy Birthday" and Maxi’s eyes widen. We get the impression that he is listening and enjoying it. It is a lovely and relaxed party. We talk and laugh, the sun is shining and the cake disappears in seconds.  And Maxi is in the middle of all of it. He is well.

When the kids leave around 5.30, Katja comes round to congratulate Max while he has already gone out in his wheelchair with his nurse Mrs Fund around Sachsenheim. Back home it’s dinner time. Eva and Miche arrive and stay for a chat. Maxi gets very tired and falls asleep around 9pm.

Minutes later he has a slight epileptic seizure, but only briefly and without stopping breathing. Why? We don’t know. Maybe the day was a little bit (too) exciting for him….

Thank you. Thanks to everyone who was with us and Max on this difficult and emotionally loaded day. It was a good day for all of us.


16 June 2007

It seems as if things with Maxi were changing again. However, we do not yet know into which direction.

Seizures have been occuring more often lately, last week there were five. Typically they are short and mean no problem. But since they may happen unpredictably at any time day or night, we have to watch Maxi around the clock. Twice we had to even intervent by using emercency drugs to terminate the seizure, since Maxi did no longer breathe sufficiently while in the seizure and the oxygen blood level had subsided too much.

But there are positive news as well: some days ago Maxi has started moving the left part of his body which had been more or less paralyzed for many months. Especially his left leg shows a strong response to outer triggers such as tickling the sole of his foot, etc. He stretches on both sides and pulls away his left arm when he is being "teased" there.

When you address him from the side, he turns his head and looks at you. This does not always work, but mostly in the mornings when he is well rested it does.Sometimes it even seems, as if he were ready to get up at any minute...

Maxi keeps laughing when he feels good... Sometimes on both sides and with all his heart, as we know it from the good old days. Now and then it  even seems as if he was calling us. Not by words of course, but with special sounds. He is overjoyed when his brother Julian joins him. Nobody else can cause such strong emotions in him. And Julian stands by him, talks to him, makes jokes, laughs with him. Every day, as often as possible...

2 June 2007

Even though the heat was a bit much for him, Max seemed to be feeling pretty well over the last couple of sunny days.