Our daughter, age 7 was diagnosed with it last week. The doctor said it is so rare that he has never seen a case, and he is a Rheumatoid doc. We went for a MRI and the only place that is seems to be affecting is her liver. She was immediately put on steroids and is feeling better. We had a very close call. Most of the time MAS is not caught until it is too late and the child is going into organ failure.
Is there any other mother that is going through this? I would like to hear from you and talk.
Just wondering how they caught this? What symptoms did she have? How fast did it come on and how fast will they have it under control? What form of arthritis does she have and how long has she had it? Has her liver ever tested abnormally in the past? Sorry I don't have anything that's actually helpful for you! I hope your daughter makes a full recovery!
About a week ago, she stopped eating and drinking. All she was doing was sleeping so we called the doc and he saw her immediately. More bloodtest were taken. By this time she was very dehydrated and hadn't hardly eaten in two day. Still no answers. Two days after the doc visit I got a call from the doc. It was a week ago last Friday in the evening. He then told me what he suspected, she might have MAS. We needed to immediately take her in to the hospital and get a chest x-ray and a MRI as soon as he could schedule it. I knew what he was looking for. With systemic JRA, childrens' internal organs swell, with MAS it does the same but on a more sever level. I knew that MAS was rare and very fatal. SO, she was tested that weekend.
Come to find out, she did have MAS but we had caught it in time. It had started affecting her liver, her liver was swelling. As of today, she has been on steroids seven days and had made a complete turnaround. She has been blessed by our Lord. The deathrate in MAS children is 15 to 60 %.
The doctors don't catch Macrophage Activation Syndrome until it is too, too late.
We don't know what causes JRA and MAS. Some say that is is genetic. Some say it is an immune problem, being that your immune system is too good and is fighting its self. All I know is that too many children are suffering from it and the doctors don't know enough about it.
Luci
Quoting JMNsmom:Just wondering how they caught this? What symptoms did she have? How fast did it come on and how fast will they have it under control? What form of arthritis does she have and how long has she had it? Has her liver ever tested abnormally in the past? Sorry I don't have anything that's actually helpful for you! I hope your daughter makes a full recovery!
Her liver had been tested to check and see if it was okay about a month ago. They do this with a blood test. The only symptoms she had was a rash, at first. We ended up going to a dermatologist for food allergies. They didn't know what was wrong.
The MAS came on suddenly. One day she was fine, the next something was wrong.
Lucinda
http://sycamorecrossingcountrycrafts.com/default.aspx
Hi Lucinda,
I have macrophage activation syndrome. I was diagnosed in 2009 at the age of 23, I was also pregnant. My liver enzymes were through the roof, I had pancreatitis, lung damage from a blood transfusion, 2 seizures, had heart failure and went into a coma. It took the second bone marrow biopsy to diagnose me and just in time. I had no health problems before this, not even arthritis. I was defintiely lucky! I am on cyclosporin now and the doc is talking about taking me off of them and then just monitoring me.
I am so happy that they found out your daughter had it before it was too late! I Can't even imagine your fear during that tough time. According to my doctor, as long as it is monitored closely we should live a relatively normal life. And if a flare up should happen all they would have to do is put us back on the cyclosporin. I hope more information is discovered soon. I would Love to know if I can pass this on to my children, which I pray I didn't. God Bless you and your daughter, I hope she continues to do well :)
Gerson Therapy
- ljg38
on Nov. 11, 2007 at 9:06 PM