This cute little girl is our daughter Zoe, and this is a brief account about Zoe and how we found out about the condition she has which we now know is called Ocular Myasthenia, her treatment, how we are coping with it, and more importantly, how she copes with it.
One week before Christmas 1999 almost overnight we noticed that Zoe's right eye had turned outwards and that her eye lid had drooped. Our initial thought was that it was a 'lazy eye' and we were not unduly concerned as we knew this could be corrected. We took Zoe to our GP the following Monday who after a long examination phoned the Ophthalmic unit at Warrington General Hospital who advised us to take Zoe to hospital immediately. When we arrived there were three doctors waiting to examine Zoe and by this time we were starting to panic. After more extensive examinations we were asked to bring her back the next day to see the Ophthalmic Paediatric consultant and so, still none the wiser but with our imaginations running wild we were able to take Zoe home.
Back the next day and you start to worry when the nurse assigned to us was not only waiting for us when we arrived but kept telling us not to worry as it might be nothing !!!. More examinations, further tests by numerous doctors and an MRI scan was taking it's toll on both Zoe and us. Thankfully the scans and tests showed no brain tumour (which is what everybody was thinking) and we could relax a bit although we were still none the wiser as to Zoe’s condition.
The next step was a referral to a consultant neurologist at Alder Hey Hospital in Liverpool the next day. The neurologist suspected ocular myasthenia immediately and wanted to give Zoe a Tensilon test which would confirm it. As Zoe is terrified of needles this was easier said then done and it took three to four hours before the test could be administered. The test, however, appeared to prove conclusive and Zoe's eyes opened wide briefly prompting a few tears from us. Although not a pleasant condition we were relieved as it was not life threatening and she should lead a fairly normal life.
After Christmas we took Zoe back to the neurologist who immediately noticed that her eyes had changed further. Both eyeballs were now straight but there was no movement in them and both eyelids were down, this cast doubts on the diagnosis as this was considerably worse than other cases the neurologist had seen. It seemed as if we were back to square one and we started worrying again. Zoe was admitted into Alder Hey and had to undergo a lumbar puncture and a muscle biopsy, thankfully under a general anaesthetic.
These tests ruled out certain nasty conditions (they never did tell us what !) that had been considered and a blood test showed a high level of antibodies which almost certainly confirmed the original diagnosis of Ocular Myasthenia. The next step was visit to the Walton Centre in Liverpool for an EMG test and a course of Immunoglobin treatment. Getting the EMG test done was a nightmare in itself as getting her under for the general anaesthetic was a now becoming increasingly difficult due to the trauma of the various test she had undergone and in the end the test proved inconclusive as they often do. The immunoglobin treatment was given anyway and Zoe was very brave spending two full days on an Intravenous drip which was very painful, particularly when the tubes became blocked .
We were told that the treatment should take about 10 to 15 days to work and last for 6 to 8 weeks, however we noticed that after about 2 days her eyes were considerably better but this only lasted for about a week or two. The EMG test was repeated in July 2001 and proved beyond doubt the diagnosis of ocular myasthenia. And this is where we are now, Zoe’s eyes are sometimes good and sometimes bad, often better in the morning than evening.