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Elise’s condition started when she was about 18 months old. She developed large ulcers at the back of her throat and she seemed to be breathing heavier. We took her to Kings Mill Hospital where they tried different drugs but nothing seemed to work. They called the chest specialist at Sheffield children’s hospital and we were taken to the hospital at Sheffield. Elise was on 10L of oxygen but still sat up playing in her bed.
After about 3 weeks and loads of medication they found that Methylprednisolone seemed to be making her better. We were sent home with a prescription for prednisolone and loads of follow up appointments. The diagnosis was suspected sjogrens syndrome. Elise never looked well and healthy from the age of 18 months. She was always pale and quiet; she ate but not as a healthy child would eat.
The prednisolone worked but every time they tried to reduce it Elise would have a flare up, not as bad as the first episode and not bad enough to have to stay in hospital. She was very tired when she was having a flare up she would come home from school and go straight to sleep on the sofa while I was making tea. The flare ups kept coming and going until she was about 7 or 8, that was when (for no reason at all) she just lost the use of her legs. She just wasn’t strong enough to use them. Off we went to Sheffield hospital and she had a portacath fitted (which caused her lung to collapse so a chest drain was fitted too) and was put on immunoglobulins or Goblins as Elise called them, once a month over 2 days with methylprednisolone also given.
We tried to obtain a wheelchair for Elise from social services. What a nightmare. I had to carry Elise into the building, wait to be called in to be measured only to be told it would take 6 months for us to receive a wheelchair! I was livid! We ended up borrowing one from Sheffield hospital.
While all this was going on they had contacted Alderhey hospital in Liverpool and an appointment was rushed through for us to go and spend 3 days there. They wanted us to stop for 4 days but they wouldn’t let us sleep at Elise’s bed side, so I advised them to do as many tests as they could.
Follow up appointments were made at QMC in Nottingham under Dr Helen Venning. Now the diagnosis was JDM and Elise was put on Methatrexate injections (once a week). Elise always seemed to have tummy ache and a weak bladder and was put on Omeprazol and was ok for a while. A few months after this Elise’s poo was like an orange oil but by this time we had monthly visits to kings mill hospital where Dr Venning would attend. Elise went to see a liver specialist at QMC, Dr Charlton. Elise was then put on Creon tablets which worked very well although Elise still gets tummy ache but seems to be very windy.
Regular blood tests were taken and all the results seemed to be normal.
Just recently Elise started going to bed on her own at about 5 or 6pm for no reason, we put it down to a flare up. This went on for a few days then Elise said “Dad………..I don’t feel very well”. I asked what the matter was and all she said was “I don’t know” and she started going to bed then getting up 5 minutes after and come back down. I was starting to worry but with out any symptoms I didn’t know what to do. Like any parent I thought that if she is no better in the morning then I will take her to the QMC and get her checked over.
The next morning was frightening. She didn’t get up as normal and when I tried getting her trousers on she straight away started taking them off. I helped her out of bed and tried to guide her to the toilet and it was as if she didn’t know where she was or what she was suppose to be doing and got in bed again. Off to the QMC we went. Brain swelling was what we were told and that a comma or even death was possible. I’ve never cried so much in my life!
Elise had hallucinations while we were in hospital. She said a man was inside a balloon….it is funny now but not at the time. Elise had a Hickman line put in and was started on Chemotherapy. She pulled through but seems to be more frightened than before but she is ok.
Elise’s school seems to be trying to force her back into school now but all this has made me realize, I know what's best for Elise and we will take it very slowly and Elise has to do things gradually.
Social services eventually arranged to have a stair lift fitted and also a wet room with shower to be fitted.