February 2009 – Avastin drops

In February 2009 Max is a week in VUmc and starts a cure with Bevacizumab (Avastin) drops. The first effects are positive. A friend who has a pharmacy developed an oinment for nightly treatment without woolfat, thus eliminating part of the irritation when waking up. Allergy analysis didn’t show any news. Max has hay fever as many people in his family. Precautions were already taken. Max now realizes how low his vision is. He accepted Sensis’ proposal to start learning … Read More

December 2008; could not read anymore

Since early December 2008 Max couldn’t read anything anymore. Developments went quickly now. We knew it was time for action, for measures: neovascularisation was covering most of his cornea. We contacted Sensis in the Netherlands, an institute that takes care of functioning and well being of blind people and persons with poor eyesight. It was again wunderful to meet persons that truly care about helping others. January 2009 In January 2009 we got in touch with several oculists and we … Read More

May 2008

As from May 2008 things got into a rush. Despite the steroids, despite the diet, Max’ vision got to the point that he wasn’t able to travel independently and safely in modern traffic anymore. So, his skin was healed, his nails were improving (but were far from perfect) and his eyes were still getting worse. The effects on his eyes can be summarized as Dryness, no tears at all Inflamed Conjunctiva Corneal erosions Progressive neovascularization Probable limbal stem cell deficiency … Read More

March 2007 Update

In March 2007, after the failure of our experiment with sceral lenses (that normally would have helped greatly but the complexity of Max’ problems was just too big), we got to visit a naturopathic doctor. She analysed Max and found him to have the resistance and constitution of an old man. He was diagnosed with the “leaky gut syndrom”. So Max didn’t eat Lactosis, nor Glutes, nor Proteins for more than a month. What happened? His skin got back to … Read More

Never be the same

In January 2007 it became clear that his eyes would never be as they had been before SJS. Thanks to some crises during 2006 he had started a cure with Dexamethason, a cortic steroid. Nevertheless, his eyes deteriorated. His skin didn’t heal. His nails grew dangerously. We started looking at alternative methods, without specialists laughing at symptoms (they all did, except dr. Zaal in VUmc, the eye physician). After an experiment with scleral lenses, contact lenses that are so big … Read More

March 2006 Max left the hospital

On March 30th 2006 Max left VUmc. He was happy to return home. His lips and mouth stopped bleeding in the beginning of May.By then he was able to eat most food. As his mouth seemed to repair quickly, he had ongoing problems with his eyes, nails and skin. Max had enough energy to go to school, which he did at first half days and in the course of June fulltime. We had doubts whether the effects of SJS were … Read More

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