From the beginning

Zoe was 14 months old and as we made our way across the world from France through to Dubai and then on to Brisbane Australia... It was the first time my Brother and Sister were to set eyes on her. Their first meeting was a little difficult because Zoe screamed for almost 3 weeks (Our entire holiday). I thought that this was because she was in a new environment and around people she didn't know...

Like her big brother Paul and Big Sister Mia, she took her first steps in Australia! I was very proud that all my kids took their first steps over there...

Regardless of Zoe being miserable most of our holiday we did have a lovely time catching up with family and friends. Willy and I took the kids out west to my families 'outback station' where they rode a horse and went to see a rodeo. Then it was time to fly back and spend three days in Dubai and then back to France.

By the time we arrived back in France in the beginning of August Zoe wasn't walking any more.
I just put it down to her being a little lazy. She was happy and didn't complain about anything. Her Baptism was coming up at the end of August and I was excited because her Godparents from Australia (who were living in America at the time) were coming to stay!

On the 20th of August 2010, I left Paul, Mia and Zoe at their paternal Grandparents and I went to get Robyn from the train station. When I came back to get the kids Zoe had a high temperature. I gave her some paracetamol but she was still very hot through out the night. By 10am the next morning her Temp dropped and I was relieved, she was extremely tired and not eating. By 3pm the same day her fever was back 39.6° and this time I gave her paracetamol and Advil in alternation every 6 hours. Again by next morning her Temp dropped but it became a vicious cycle. It continued for almost 5 days. I couldn't get her into see a doctor until late afternoon on the 5th day and I thought "Good at least it is in the afternoon, which is when she seems to get her fever" but it didn't come... she was fine. So I cancelled her appointment.

By the following week she couldn't stand up and she stopped crawling. She would slide around on her bum and I started getting worried. I took her to the doctor and told him everything that had happened over the last 2 weeks but I had the feeling he just thought I was some neurotic mother who was up set because her daughter wasn't walking yet... He told me to wait a month and come back if she still hasn't started to walk.

I was getting very stressed. 3 days later Willy had a day off and I said that he had to come to the Doctor with us because I was scared they were not taking me seriously so he came and the Dr gave us a referral for an Ultrasound and an X-ray. We had to wait 6 days before we got an appointment.

The day arrived and I thought we would finally get some answers. By then Zoe wasn't able to straighten her legs. I took her to the hospital in Chaumont, it was the worst experience I have ever been witness to.
The ultrasound was fine but the X-ray was horrible. They had to straighten her legs. There were 2 ladies pulling each leg and another holding her chest down. Zoe was screaming with fear and pain. She vomited all over herself. RESULTS... they found nothing!!!!!!

Another week went by. We are now at the end of September and still no closer to why my baby was in so much pain... I started looking on the internet (I do not advise this) it scared the crap out of me! Finally our family Dr suggested hospitalization and a lot of tests! October 3rd Zoe was admitted to hospital in Troyes (I was not allowing her to go back to Chaumont).

This is where we met DR SOTO. He started the tests and even when re-doing the X-rays and so on they were gentle with Zoe and she started to have confidence in the people who were poking and prodding her... and so did I. By the second day Dr Soto said it is looking like a suspected Poly-articular arthritis. I had heard of this before because I had gone to school with a girl who had it ( I was 11). We had to be sent to another hospital for children who specialize in rare disease before we were given the final diagnosis.

We are now in November! And we went to Paris at Necker Hospital. It was confirmed that Zoe has arthritis but we are yet to discover which kind. This is where we found out that there are many forms of arthritis in Children and that they range in severity. We were given another appointment for more tests in December.

This time we were to see the head of Rheumatology  at Necker hospital. We arrived and he saw Zoe and then cancelled all of her tests. He said he didn't need them. She has Still's Disease! Systemic Juvenile Idiopathic Arthritis. I was in a bit of shock that he could be so sure without doing any more tests.
Dr Quartier gave us the run down of this disease. It can attack her heart, Liver, Spleen, Lungs, Eyes and all her joints. This makes SJIA the worst kind of Juvenile Arthritis and the hardest to treat. He said he believes in aggressive treatment in the hopes that they can reduce long term damage to her organs and joints. He said there are 3 treatments that 'He Believes' are affective for SJIA. and one of them is not available as of yet. We started the first one on December 27th it was Kineret, a daily needle that Willy and I had to give her.  We made it a family affair. Paul would get the needle out of the fridge each morning, Mia would get the alcohol wipes and then Willy or I would hold her while the other one did the needle. Then everyone would get cuddles... We ALL needed that!

Zoe still had a rash that was covering her legs for a few months. Just a salmon colour rash, not itchy or worrying in anyway. To be honest I just thought she had dry skin. This is a sign of Still's disease!

The 6th of January 2011 our baby girl started to walk again! She was taking a few steps at a time and we were so happy! She still wasn't sleeping through the night but I only had to get up once or twice to change her position when she woke in pain. Before She was waking 7 or 8 times a night because she couldn't move. Her Nanny (Maternal Grandmother from Australia) made her heat packs, which made a big difference when she slept.

She was doing very well until the beginning of February. She started  having a reaction to the needles. She was getting lumps in her legs and her Lungs and Liver were still inflamed. She was also very anaemic!

We were asked to come back to Paris on the 18th of February and Dr Quartier said we had to start a new treatment but Zoe will be the youngest child to have it because the Study was for children over the age of 2, Zoe was 20 months.... so not that far off but it scared the hell out of us when he explained the dangers of this medicine. We had no other choice left to us though... so what could we do, but put our trust in him.

Zoe started ACTEMRA on March 8 and we were allowed to do it at our hospital in Troyes instead of going to Paris every 15 days. So the nursing staff and Doctor where given the run down on what to do and she had constant monitoring.  She was hooked up to all kinds of machines and the Dr and Nurses were nervous which made me nervous! First treatment went well but then they told us to watch her carefully the rest of the day and night. I asked what to expect and they said they didn't know because no one had used this medicine before!  >o< SHIT!!!! I didn't sleep too well that night! Actemra is an Interlukin-6.. I will try and explain that in my next post! :)