Saturday, August 6, 2011

Master Z's Story

Last year when Master Z was 5 he woke up one morning with a swollen face on both sides, looking like he had the mumps. He was unable to eat or open his mouth and was very sick with a fever. I took him to the doctor and they thought it would be strange if he had mumps as hi is immunised against it. They sent him for a blood test which confirmed negative for the mumps. We didn't know what it was. They were saying that if he had blocked salivary glands then it would not happen at the same time on both sides. We were sent home with very strong antibiotics which cleared it up.

5 months later Master Z woke up with one side of his face swollen. I took him back to the doctor as he was really ill with a fever. He couldn't even walk and slept on me while the doctor checked him over. She gave us a referral to see an ENT and sent him home with antibiotics.

The doctor called me the next day to check on Master Z as he had been very ill in her office and i confirmed that i had made an appointment with the ENT and that the antibiotics had started working. He had begun eating again which was a good sign. She asked me a lot of questions about Master Z and i explained that his skin had always been dry and kind of scaly in places and that he had been having night sweats. I asked her if it could be anything to do with an Autoimmune disorder as my husband and i both had one.
"He needs a blood test." Was all she said.

Another blood test - another 5 people to hold him down... poor kid.

I saw the ENT the next day (I was very poor after that!) He said that if it wasn't an Autoimmune disorder then they may have to remove the parotid glands if it continued to happen (eeek.)

The day after that i got a call from the doctor to confirm that Master Z did in fact have an Autoimmune disorder and that he thought it was Sjogrens Syndrome. We had to go back in and get a referral to see a paediatrician.

After seeing the paediatrician who had no idea what Master Z had, we were referred to a paediatric rheumatologist. We had to call this paediatrician once we found out what Master Z had as he was quite curious. So was I!!

We saw the paediatric rheumatologist (there is only 1 in QLD....Lucky he was only 1 hour away!) He told me that he wasn't going to diagnose Master Z with anything until he had other symptoms and i was to drive him back the the hospital if he got his swollen face again. He told us that he thought Master Z had a mixed connective tissue disease evolving. He had another blood test and told us to come back in 6 months.

He woke up with a swollen face again 4 months after the last episode. Back to the doctor, he went downhill very fast. This time the doctor sent him for an ultrasound of the face to try and confirm it was Sjogrens Syndrome. Master Z was very well behaved during the ultrasound but the person performing it took me aside and asked me if i knew why he was having it done. I said "to see if he has Sjogrens Syndrome."
She confirmed that it showed the same pattern as a person with Sjogrens Syndrome.

As soon as the results came back the doctor rang me and told me to take Master Z for an urgent blood test. When the results came back from this one he said the patterns had changed and his Sjogrens Syndrome was secondary.... meaning secondary to something else. Another Autoimmune disease. Possibly several others! We will not know until he starts getting more symptoms.

I feel so bad like it is somehow my fault. I also feel bad as Sjogrens Syndrome usually affects women during their menopausal years and Master Z is only 6. I just hope that it doesn't affect his life very much - or get really worse as he grows. I hope he never has any other symptoms because they are horrible.

He is such a sweet natured little boy and if i could have this disease in place of him i gladly would.

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