The 24th of August Willy, the kids and I took the early train to Paris, 6:15am. Direction Necker Hospital for Zoe. Every time we have been to see the specialist we have walked out with worse news than we walked in with and I suppose I wasn't expecting any different. I can honestly say that I didn't sleep more than a few hours. The previous days and nights were the same. Anxious about the possibility of adding another treatment (Chemo shots) to what is already a very powerful drug (Actemra).
We arrived and the wait was not very long. We spoke about the side effects that Zoe has been having to Actemra (Spots and loose bowls), which didn't seem too worrying to her specialist so we moved right along to the examination.
She has gained movement in all of her joints that were effected, her inflammation levels have dropped and her Liver and Lungs are doing better. So all in all Actemra is doing what it is meant to do. We were basically told that the pain that she suffers is "her" normal.... We can not eliminate all of her pain all of the time which is why she is on Advil 3 times a day.
I have a big problem giving her so many powerful drugs because she is only 2 years old and so small. So we asked if on good days we can start to eliminate 1 dose of Advil and the answer was 'Yes, we can see how that goes'. First reason to smile.. I felt like that was a small step forward in gaining some control over this horrible disease.
The Dr said she wont be giving her the Chemo shots but will organize an X-ray of her hips when she has her next IV treatment in Troyes (which she has every 2 weeks). So for now No Chemo and there was no talk of infiltrations either. Second reason to smile!!!
I started to get a little excited and asked if she continues down this road will it mean she will be in remission and they said we are far from Remission and they prefer not to talk about it now. Oh well I figured what the hell I just wanted to ask and even though I expected that response I was still a little disappointed. I know we have only been in this fight for a year now and there are other family's who have been fighting this disease for many many years and are still fighting today, so why should we be any different?? It doesn't hurt to hope though.
Zoe will be starting pre-school in September. 4 mornings a week. I know this may come as a shock to some of my Australian friends but here in France the kids start pre-school normally around 3 years of age. However if the town you live in is offering a younger program then the 2 year olds can also attend. It isn't possible for Zoe to continue at day-care due to Actemra which is an immuno-suppressant drug. She is susceptible to all illnesses and it can become dangerous for her if she continues getting sick because they have to stop her infusions of Actemra and therefore put her at risk of flare ups with her SJIA. So if there is someone sick in her pre-school class we will just keep her home. Due to a contract with a day-care centre we 'Can' keep her home but we still have to 'Pay'!!! From February to May we kept Zoe home but still had to Pay the entire 4 months that she missed. So financially Pre-school was the better option for us.
I feel like my face cracked and I have been able to smile for the first time in a year!!!! I am so relieved! It may be a very small step forward but I can and Will rejoice in that!!!!!!! I guess that is what it is all about and what will eventually see us through; It isn't about having the perfect healthy child that every parent wants and in away expects but it is more about remembering that we are so very lucky that we have 2 healthy children and days when our not so healthy child can "Look" healthy :°) I have always believed that an invisible disease is a horrible thing to have because no one understands but now I think maybe it is better for her that way. That will be another post.
We are now on holidays in the west of France and soon we will be taking the kids to their surprise stay at Disney Land Paris!!!! Can't wait.
vendredi 26 août 2011
mercredi 17 août 2011
Breath of air (not all that fresh)
Well things have been extremely hard this last year and I finally hit breaking point a few months back. Willy and I decided it was time for us to take a breather from the kids for a couple of days and enjoy our time together without the constant worry that Zoe is in too much pain or that I may or may not be giving enough attention to Paul and Mia.
Juggling healthy kids with a sick kid is not easy because of course our focus is more on the one who isn't well, so we are forever checking ourselves for 'attention time' for both Paul and Mia. Only once I have checked and double checked that Zoe is OK and that Paul and Mia seem fine, I forget about Willy and I and mostly the 'I'!
We left the kids with Willy's parents and took the train to Paris. 2 hours of non-interrupted reading and I was in heaven! Willy's friend met us at the train station because he was lending us his apartment for the night and we went on a 20 minute walk through the city until we reached his 4th floor apartment. Just next door was a cute little Japanese restaurant and since I had been dreaming of sushi for a while we decided to stop in and have a bite to eat. YUM'O!!
We dumped our bag and then headed for the Metro (It is the most disgusting smelling place you could imagine, the minute you get in there you want to get in the shower and scrub yourself with the strongest cleaning product you could find). We were on our way to the University of Medicine to check out a museum (which kids are not able to visit) I was very excited to be visiting it but alas it was closed for the summer! Yep the busiest period in France and it was closed!!!! Oh well not to worry we went to buy some Nespresso instead.
We were meeting friends for a picnic on the River Seine, so we went and bought baguette, ham, cheese, cherry tomatoes, olives and lots of red wine! Not forgetting the bottle of Champagne we had brought with us from home. It was a magic night of easy laughter and beautiful sights! I know they say Paris is the most romantic city in the world but really it is dirty and smelly and there are more crazy people in the Metro than in all of the mental hospitals in France! That is my opinion anyway. However when you are above ground the buildings are amazing and the preserved history leaves you awestruck!! "says me coming from a colonial country which can barely wipe its own back-side because it is so 'New'. Australia was founded by the English in 1770. So walking amongst some of the oldest buildings in Paris that date back to 1172 was pleasurable (bad smell excluded)!!!
I called the kids to make sure all was fine and to say their goodnight prayer with them and I felt at ease! I missed them but I was very happy to relax and not have to think about everything.
The next morning we headed back into Les Halles to have breakfast and watch a movie in ENGLISH :)
We didn't get time to see a museum because we only had 3 hours before our train but we walked around and talked and enjoyed each others company. It was wonderful. I had forgotten how it felt and I have made a promise to myself that I will try and take time out for myself more often.
We came home and the kids all burst out of the house and wrapped their arms around us. It was an amazing moment and the perfect end to a wonderful 2 days!
All the kids are in one piece and no one is sick! However Zoe has WORMS! Paul thought that was hilarious until my Mother in-law informed him that it will be quite possible that he will have them also. GROSS! A trip to the pharmacy first thing in the morning to find a treatment I think :)
I will be happy to kiss them goodnight tonight!
Juggling healthy kids with a sick kid is not easy because of course our focus is more on the one who isn't well, so we are forever checking ourselves for 'attention time' for both Paul and Mia. Only once I have checked and double checked that Zoe is OK and that Paul and Mia seem fine, I forget about Willy and I and mostly the 'I'!
We left the kids with Willy's parents and took the train to Paris. 2 hours of non-interrupted reading and I was in heaven! Willy's friend met us at the train station because he was lending us his apartment for the night and we went on a 20 minute walk through the city until we reached his 4th floor apartment. Just next door was a cute little Japanese restaurant and since I had been dreaming of sushi for a while we decided to stop in and have a bite to eat. YUM'O!!
We dumped our bag and then headed for the Metro (It is the most disgusting smelling place you could imagine, the minute you get in there you want to get in the shower and scrub yourself with the strongest cleaning product you could find). We were on our way to the University of Medicine to check out a museum (which kids are not able to visit) I was very excited to be visiting it but alas it was closed for the summer! Yep the busiest period in France and it was closed!!!! Oh well not to worry we went to buy some Nespresso instead.
We were meeting friends for a picnic on the River Seine, so we went and bought baguette, ham, cheese, cherry tomatoes, olives and lots of red wine! Not forgetting the bottle of Champagne we had brought with us from home. It was a magic night of easy laughter and beautiful sights! I know they say Paris is the most romantic city in the world but really it is dirty and smelly and there are more crazy people in the Metro than in all of the mental hospitals in France! That is my opinion anyway. However when you are above ground the buildings are amazing and the preserved history leaves you awestruck!! "says me coming from a colonial country which can barely wipe its own back-side because it is so 'New'. Australia was founded by the English in 1770. So walking amongst some of the oldest buildings in Paris that date back to 1172 was pleasurable (bad smell excluded)!!!
I called the kids to make sure all was fine and to say their goodnight prayer with them and I felt at ease! I missed them but I was very happy to relax and not have to think about everything.
The next morning we headed back into Les Halles to have breakfast and watch a movie in ENGLISH :)
We didn't get time to see a museum because we only had 3 hours before our train but we walked around and talked and enjoyed each others company. It was wonderful. I had forgotten how it felt and I have made a promise to myself that I will try and take time out for myself more often.
We came home and the kids all burst out of the house and wrapped their arms around us. It was an amazing moment and the perfect end to a wonderful 2 days!
All the kids are in one piece and no one is sick! However Zoe has WORMS! Paul thought that was hilarious until my Mother in-law informed him that it will be quite possible that he will have them also. GROSS! A trip to the pharmacy first thing in the morning to find a treatment I think :)
I will be happy to kiss them goodnight tonight!
lundi 15 août 2011
When the sun comes out, there is still rain :(
Today the sun is out and it is around 23°. Which makes it a wonderful day. It started out that way! Zoe woke up after a wonderful night sleep, happy and full of energy. I was talking to my sister Cara (in Australia) on the phone this morning and I was very happy to report that Zoe was having a 'Good day'.
I put her down for her afternoon nap and low and behold she wakes up with a limp and with spots all over her. The spots started appearing after her treatment at the end of June. Her Paediatrician said it was a virus (in the herpes family) and that we would see if it happens again.
He has been on holidays the last 2 treatment days and yes after each treatment the spots appear! So today I have taken photo's to show him on Tuesday and when we go to Paris on Wednesday I will also mention it to her Rheumatologist and see what he thinks.
I have read that spots can occur as a side effect of Actemra. Oh well my bubble has burst today I was hoping for a good day with out pain or at least a semi normal day. As the saying goes 'shit happens'.
I think that one of the worst things having to deal with a child with a chronic illness is the observation period. I say 'period' lightly because the word doesn't actually fit here. I thought this observation thing would be the first 3 months or so but then it became a daily thing and then a minute thing. I find myself watching her every movement, how she sits, stands, walks, runs, climbs. It gets tiring and takes its toll on me mentally and emotionally.
It is very difficult to look at her objectively without over analysing all the little movements that I know shouldn't be there! When I am in that mindset of 'Oh shit is her hip hurting her' or 'has it gone into her foot now'? to have friends and relatives, who do not see her on a daily basis say "but look at her she is playing just like the other kids, she is fine" I want to scream at them and say "for crying out loud how is it fine for a 2 year old to live in constant pain, to never know a day without pain, to the point where this IS her NORMAL so that she doesn't complain she just gets on with it". How the Hell is that fine? How is that OK?
With that said I notice that people can look at her and still put her in the "Normal" basket and not the "handicapped" basket ... because lets face it there are many baskets out there and people love to stereotype. Zoe looks normal because she has an 'invisible disease' but that doesn't mean she doesn't suffer every minute of every day. Medically she is classed as a physically handicapped child but she wont ever let that stop her from obtaining the same goals as Paul and Mia. I am sure she will find it difficult at times but ultimately she will achieve greater things because she will have to work harder. I truly believe that!
Yes she has come a long way from the little girl who would slide on her bum or do an army crawl if she needed to get somewhere, she is walking and running and able to climb things with a little more difficulty and a little slower than the other kids but she can do it and she is determined to do it with out help! She is an amazing little girl and Willy, Paul, Mia and I are so proud of her!
I put her down for her afternoon nap and low and behold she wakes up with a limp and with spots all over her. The spots started appearing after her treatment at the end of June. Her Paediatrician said it was a virus (in the herpes family) and that we would see if it happens again.
He has been on holidays the last 2 treatment days and yes after each treatment the spots appear! So today I have taken photo's to show him on Tuesday and when we go to Paris on Wednesday I will also mention it to her Rheumatologist and see what he thinks.
I have read that spots can occur as a side effect of Actemra. Oh well my bubble has burst today I was hoping for a good day with out pain or at least a semi normal day. As the saying goes 'shit happens'.
I think that one of the worst things having to deal with a child with a chronic illness is the observation period. I say 'period' lightly because the word doesn't actually fit here. I thought this observation thing would be the first 3 months or so but then it became a daily thing and then a minute thing. I find myself watching her every movement, how she sits, stands, walks, runs, climbs. It gets tiring and takes its toll on me mentally and emotionally.
It is very difficult to look at her objectively without over analysing all the little movements that I know shouldn't be there! When I am in that mindset of 'Oh shit is her hip hurting her' or 'has it gone into her foot now'? to have friends and relatives, who do not see her on a daily basis say "but look at her she is playing just like the other kids, she is fine" I want to scream at them and say "for crying out loud how is it fine for a 2 year old to live in constant pain, to never know a day without pain, to the point where this IS her NORMAL so that she doesn't complain she just gets on with it". How the Hell is that fine? How is that OK?
With that said I notice that people can look at her and still put her in the "Normal" basket and not the "handicapped" basket ... because lets face it there are many baskets out there and people love to stereotype. Zoe looks normal because she has an 'invisible disease' but that doesn't mean she doesn't suffer every minute of every day. Medically she is classed as a physically handicapped child but she wont ever let that stop her from obtaining the same goals as Paul and Mia. I am sure she will find it difficult at times but ultimately she will achieve greater things because she will have to work harder. I truly believe that!
Yes she has come a long way from the little girl who would slide on her bum or do an army crawl if she needed to get somewhere, she is walking and running and able to climb things with a little more difficulty and a little slower than the other kids but she can do it and she is determined to do it with out help! She is an amazing little girl and Willy, Paul, Mia and I are so proud of her!
dimanche 14 août 2011
Rain 'P' off
Ok so you know how old people always whine that they are in pain and as a youngster you think that old people are really magic because they 'feel in their bones' when the rain is coming? Well I guess it is the same for Kids with Arthritis also.
We have had the worst summer imaginable (continuous rain) with temperatures dropping to 12° on occasion and therefore Zoe has been miserable! She has been walking funny for a while but we notice it more on wet days. Somehow I think her moods set in motion the rest of the household. I get more stressed because she cries all the time and because I am stressing about the inevitability of Methotrexate (Chemotherapy) looming in our near future! Mia gets extremely tired because she and Zoe share a room and therefore she isn't getting enough rest and Paul just goes out in sympathy for the rest of us and decides to be a little shite and annoy everyone! Meanwhile Willy has ran for cover (his office) and doesn't seem affected at all.
So imagine standing in front of the monkey cage at the zoo, when they are really hyped up! You'd see 2 monkeys throwing crap at each other and screeching like the wild animals that they are (this would be Paul and Mia) then you have another little Monkey (Zoe) screeching and climbing all over the Older female and then you have another Monkey running to hide in a secluded place where you can barely see him (Willy) and when the Older female Monkey can detach herself from the little screeching Monkey she runs to the fence and starts banging her head on the cage because there is NO ESCAPE (ME!)
Welcome to my house !!! I do realize that this could sound like any house where the little creatures live also and I am sure you can all sympathize with me on this one! P off RAIN!
Welcome to my house !!! I do realize that this could sound like any house where the little creatures live also and I am sure you can all sympathize with me on this one! P off RAIN!
vendredi 12 août 2011
Actemra and some info
I have found this article in Arthritis Today Magazine and thought I'd share it. I copied it and now I will past it.
Actemra is an immuno-suppressant and therefore we need to be extremely careful that Zoe is kept away from other illnesses. As her Lungs suffer already from the disease and is not helped by the fact that she gets colds continuously after treatments. Where a "Cold/Flu" is very annoying to the normal population it can become potentially lethal for Zoe. Being around other children (including Paul and Mia) who have just had a Live Vaccine is a big No NO! .... but how do we bring that subject up with people we don't know? Our families know and so far have taken precautions (phone call) to make sure we are not around them at those times.
We are very aware that some children get sick with a live virus and don't even know it because of the incubation period and we can not prevent every illness getting in contact with our family but we do everything possible!
Her Doctors are saying that Actemra is not working 100% and we may have to start her on Methotrexate which is small doses of Chemotherapy, which Willy and I would administer once a week at home (Needle). I am hoping we do not have to go down this path however! We will find this out on the 24th of August when we go back to Necker Hospital in Paris... As I explained in another post, Zoe is being treated in Troyes but they can not make decisions on her treatments and so forth. Her specialist in Paris is the only one who can make those decisions!
I have now given a back round of the disease, treatment etc... Now I will concentrate on our family and our struggles.
Actemra Approved for Severe Juvenile Arthritis
Already approved for adults with rheumatoid arthritis, Actemra is now FDA approved to treat kids with a rare form of the disease.
By Jennifer Davis
4/20/11 The U.S. Food and Drug Administration has approved the biologic drug tocilizumab, or Actemra, for systemic juvenile idiopathic arthritis in children older than age 2.
One or two out of every 1,000 children have juvenile idiopathic arthritis, and about 10 percent of those children get systemic juvenile idiopathic arthritis, or SJIA. It is distinguished from other forms of juvenile arthritis by serious inflammation in the bloodstream that can affect internal organs and cause high fevers and rashes.
An FDA spokesperson says Actemra is the first therapy approved specifically to treat systemic juvenile idiopathic arthritis. Other drugs approved for juvenile arthritis – like Enbrel, Humira and Orencia – have been used to treat SJIA, but they don’t always do enough to mitigate the effects of SJIA.
Actemra is a relative newcomer to disease-modifying arthritis drugs; in early 2010 it was approved to treat adults with moderate to severe rheumatoid arthritis who did not respond adequately to TNF-alpha blockers like Enbrel and Humira. Instead of targeting the inflammatory cytokine TNF-alpha, Actemra is the first drug to block the inflammatory cytokine IL-6, or interleukin-6, which also plays a key role in driving the inflammatory process.
“The immune system in the body uses certain molecules, like TNF, interleukin-1 and interleukin-6, to create inflammation,” says FDA spokesperson Morgan Liscinsky. “Not all inflammatory diseases have inflammation that is driven by the same process, so they may have different responsiveness to treatment with agents that block the specific inflammatory molecules.”
Actemra’s approval for children comes after a multi-center study on 112 SJIA patients between the ages of 2 and 17. Every two weeks, half the participants were given Actemra and the other half placebo. Eighty-five percent of those who got Actemra had at least a 30 percent improvement in their symptoms over the previous week, compared with 24 percent of patients in the placebo group.
Actemra is administered as an infusion. The most common side effects that occurred in at least 5 percent of patients were upper respiratory tract infections, colds, headaches, sore throat, congestion and diarrhea.
Three participants also developed the potentially deadly condition known as macrophage activation syndrome, a complication of systemic inflammatory disorders in children that involves overactive immune cells. But FDA officials say the incidents weren’t higher than what is generally seen among this specific patient population.
Barbara Adams, MD, director of pediatric rheumatology at the University of Michigan Health System in Ann Arbor, says she regularly sees the effects of SJIA on children and welcomes anything new that might help them.
“I think that any new medication for childhood arthritis, particularly this type of potentially lethal childhood arthritis, is good news,” Dr. Adams says.
The FDA recommends that children taking Actemra are monitored with regular blood tests to make sure there are no adverse side effects related to liver function, blood components or cholesterol.
“When a new drug comes out we know what it’s done in the test but we don’t know what it will do day-to-day,” Dr. Adams says. “We need the experience of seeing more kids use it. We need to understand as pediatric rheumatologists how to use it in the most effective way and in which children it will be most effective.”
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We are very aware that some children get sick with a live virus and don't even know it because of the incubation period and we can not prevent every illness getting in contact with our family but we do everything possible!
Her Doctors are saying that Actemra is not working 100% and we may have to start her on Methotrexate which is small doses of Chemotherapy, which Willy and I would administer once a week at home (Needle). I am hoping we do not have to go down this path however! We will find this out on the 24th of August when we go back to Necker Hospital in Paris... As I explained in another post, Zoe is being treated in Troyes but they can not make decisions on her treatments and so forth. Her specialist in Paris is the only one who can make those decisions!
I have now given a back round of the disease, treatment etc... Now I will concentrate on our family and our struggles.
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! :)
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! :)
jeudi 11 août 2011
Putting it out there!
Hi, I am a mother of 3 adorable kids and a wife of a loving husband. I am also ME. Sometimes I lose track of who I am because my focus is on my family! A year ago our baby girl Zoe was diagnosed with Still's disease (Systemic juvenile Idiopathic Arthritis) and our world has been turned upside down. My objective with writing this blog is to share our experiences with friends and family on the other side of the world... and maybe along the way I can find myself again. I will be able to use this blog to express myself in a way I have not been able to do because I am living in France. Not being able to speak my maternal language means I can not evacuate any emotions that I build up. It feels like I am translating for someone else. This blog won't only be about Zoe and her struggles but also about Paul and Mia (Zoe's Big Brother and Big Sister), Myself and sometimes my husband Willy and how we deal with the day to day life living with a child who suffers from a chronic illness.
I hope you will get as much out of my ramblings as I hope to. :)
I hope you will get as much out of my ramblings as I hope to. :)
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