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Primary Antibody Deficiency
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This page has some information on the new diagnosis that Adam has just had

Click here to enter the UK Primary Immunodeficiency Association

What are Antibodies?
Antibodies do two things:
They help us to recover from an infection.
They prevent the same infection from recurring in the future.
 
Antibodies are divided into three main classes: G, A and M.
The most abundant class is G. It is divided into four subclasses 1 2 3 4.
Each class of antibody has a different function. For example, IgA antibodies protect body surfaces such as the lining of the lungs, and IgG antibodies are found in blood and tissue fluid and protect against invading infections.
Antibodies normally get into all parts of the body, including the skin, eyes, ears, nose, throat, lungs, intestines, joints and brain. All these organs need antibodies for protection against invading organisms. So, any part of the body can be affected by primary antibody deficiency, although usually only a few parts are affected in each case.

Click here to go to the European web page for Primary Immune Deficiency

At present, there is no known cure for primary antibody deficency.
Some people need only periodic doses or small daily doses of antibiotics, Adam tried this over the Christmas period and was sick each time. He had Azithromycin which he needed to take three days in a row and then eleven days without and then again three days in a row and so on.
However, others need to receive infusions of the immunoglobulin to replace their missing antibodies.
Adam has had his first infusion on December the 29th at the Great Ormand Street Childrens Hospital. It took about 5 hours and he had no side affects with it.
 
The immunoglobulin is prepared from pools of donated blood plasma. The infusions are very effective in helping to maintain good health and prevent damage  (or halt further damage) caused by repeated infections.

Adam has had three lots of booze in his arm and so far the only thing we have noticed is he has very loose stools and they are a very strange colour, he is going about 4 times a day and huge amounts. The doctor on Monday said that from the last time when they took blood it seemed like the infusions are not really working, the immunoglobulins should last up to three weeks, but his are not really showing in his blood after two weeks, we have to take him back to the Great Ormand Street Hospital on February 11th 2004 so we hope to find out a bit more. I will also be asking if he can have what they call a porto cath put in, its a small device put in under the skin near the arm pit, its about as big as a 2 Euro or 2£ coin and they attatch it to a main artery, so when he has to have a transfusion they can put the needle anywhere in the porto cath, he has had so many blood tests done and IV's in his hand that the veins are difficult to find and they are being used up. I hope they can do this for him as its the only thing that really upsets him, they can prod and poke him, but don't show him a needle as he stresses out.
He has been through so much the last few months, but he is still smiling his gummy smile.....lol

BobandJeff.jpg

Adam started back at school on Feb 3rd 2004, he has been away since October last year when we were told the school was not insured to give him his epi pen should they need to, they had to arrange for someone to come in and give them a basic course on how to use it. The teachers were all really good and stayed behind after school to do the course, I went along to tell them a bit more about Adam and all the problems he has had through his life. They were amazed as they obviously didn't know what he has already been through. His favourite teacher at the moment is Gilly, he likes her but has not spoken to any of the teachers yet, its the same with the doctors. He seems to like school but he said he wanted to stay with Gilly, so hopefully by the time he is 18 we might get him moved onto the infants....lol
He done some nice paintings and made a string of macaroni , i thought it was a neckless but was told no its a thing...lol
He will go on a tuesday and thursday afternoon and should start infants in September, i am not sure yet whether to let him go after the christmas break so he has a bit more time to get used to going to school, he has only been a couple of times since we moved back to England last September.
 

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