Josh & his tests, another update
Posted: Tue Feb 03, 2004 8:49 pm
Thankyou all for your kind thoughts and prayers.
The news update is almost too sad for me to type, but I can't sleep and I feel so alone.
The muscle enzyme they found in his blood is creatine kinase.
A normal count is up to 130, at or beyond this indicates many possible muscle problems. The one most fitting is muscular dystrophy, although here are over 20 types of muscular dystrophy... the internet is such a marvel, information at your fingertips... many of these may cause milder problems and not so limiting on life expectancy. Hope lived on.
The one I was concerned about, namely Duchenne muscular dystrophy, is the most severe, for boys they regress & by age 8-11 are wheelchair bound.
It affects the muscles used to breathe, and the heart.
Few live to see their 20th birthday.
The main initial diagnosis of Duchenne is by creatine kinase count, as it goes excessively high, unlike other types of muscular dystrophy,where it may be slightly raised.
I requested the count today. The paed did not want to tell me, but I needed to know. I told him I realised if it was 130+ there was a problem . He had already agreed that it is a form of muscular dystrophy they are now investigating.
Joshua's count is 23,000. Twenty three thousand.
our kids are all so precious, making the most of every day is so important.
I want to stop time, keep him at 5 years old.
We go for a repeat blood test tomorrow.
Please pray for me, my family, (I have a 9 year old son and 2 daughters, twins, who will be 8 in april) and Josh.
God sent me an angel, but it seems he was only on short term loan.
I am sorry to make you all sad, perhaps if we all pray there will be a miracle.
But then again Josh is a miracle, and i thank God for each moment of his life. He has brought so much joy to so many people, I don't know how I am going to cope with this.
Love to you, and all your little ones.
Pauline
The news update is almost too sad for me to type, but I can't sleep and I feel so alone.
The muscle enzyme they found in his blood is creatine kinase.
A normal count is up to 130, at or beyond this indicates many possible muscle problems. The one most fitting is muscular dystrophy, although here are over 20 types of muscular dystrophy... the internet is such a marvel, information at your fingertips... many of these may cause milder problems and not so limiting on life expectancy. Hope lived on.
The one I was concerned about, namely Duchenne muscular dystrophy, is the most severe, for boys they regress & by age 8-11 are wheelchair bound.
It affects the muscles used to breathe, and the heart.
Few live to see their 20th birthday.
The main initial diagnosis of Duchenne is by creatine kinase count, as it goes excessively high, unlike other types of muscular dystrophy,where it may be slightly raised.
I requested the count today. The paed did not want to tell me, but I needed to know. I told him I realised if it was 130+ there was a problem . He had already agreed that it is a form of muscular dystrophy they are now investigating.
Joshua's count is 23,000. Twenty three thousand.
our kids are all so precious, making the most of every day is so important.
I want to stop time, keep him at 5 years old.
We go for a repeat blood test tomorrow.
Please pray for me, my family, (I have a 9 year old son and 2 daughters, twins, who will be 8 in april) and Josh.
God sent me an angel, but it seems he was only on short term loan.
I am sorry to make you all sad, perhaps if we all pray there will be a miracle.
But then again Josh is a miracle, and i thank God for each moment of his life. He has brought so much joy to so many people, I don't know how I am going to cope with this.
Love to you, and all your little ones.
Pauline