Norovirus and N.G. Feeding
Mar 12, 2012 17:45:34 GMT
Post by liz2mac on Mar 12, 2012 17:45:34 GMT
Norovirus and Malnutrition
I have been doing some asking around about this for you, Crocker. I'm so glad that you finally have a bed in the hospital for Curtis, but this may still be of help to you or to others in the future.
The three things that Curtis seems to be dealing with are :
1. poor treatment of his agammaglobulinaemia in the past, which has led on to
2. norovirus which will not go, which has in turn led on to
3. malnutrition.
Firstly, I am so sorry that Curtis has suffered at the hands of this Doctor, whom I understand was not an Immunologist and has left many a problem in his wake. If you would like to discuss this issue with me once you are happier about Curtis' health, my telephone number is on the website.
I understand that the first imperative is to get Curtis' trough levels up to a high level. This may mean that he has to have more frequent and higher doses of Immunoglobulin replacement. Whilst the recommended trough level (the trough level is the lowest level of immunoglobulins in our blood that we reach in between infusions) to keep us all well is relatively low, some of us need to have trough levels that are higher, to maintain good health. For example if my levels drop below 12, I get chest infections. In order for Curtis to be able to attack the norovirus, he will need to have really good trough levels.
There has been some work done by Immunologists to see if drinking immunoglobulin is of any benefit. The results have been encouraging, and this may be something to be considered in Curtis' case. In order to prevent the immunoglobulins being destroyed by the acid in the stomach, a drug called Omeprazole has to be given at the same time.
The last thing with regard to Curtis' immunoglobulin replacement therapy is that his Immunologist may consider changing the product he is currently on, to one which has a higher level of IgA in it. IgA is the immunoglobulin which a “normal” immune system produces in the gut, lungs and other internal surfaces. This then is the immunoglobulin of choice for attacking gut bugs. Most replacement immunoglobulin products do not contain much IgA, but there is one in particular which has quite a high level. This is currently not licensed, but, as with many unlicensed drugs, can be prescribed for a specific need.
I think it would be very helpful if you could discuss all of this with Curtis' immunologist.
Now onto malnutrition. Sadly, this is something that can happen to those of us with XLA and also (though more rarely) with CVID.
To deal with the malnutrition, the aim is to give all the nutrients and vitamins needed in a form which is easily absorbed. The current best method for this is by having a “drink” called Elemental. My understanding is that this doesn't taste too good, but I've never had it, so that may not be the case. I am not sure why Curtis is to have his nutrition delivered by n.g.tube, but maybe experience shows that teenagers won't drink the stuff! I am aware that some young people with Cystic Fibrosis (with whom we share some of the problems with lungs & gut) have n.g. feeding overnight and take the tube out before going about their daily activities. I understand that one young man inserts his own tube! (more brave than me).
I know that you've both had the trauma of being “treated” by a doctor who was not qualified to deal with Primary Immune Deficiency. I hope that you both feel confident and like the Immunologist who is currently treating Curtis, ( I don't know who this is) however, within the NHS as it stands, we are all able to ask for a second opinion. In cases as complex as Curtis', this is often a good idea. To ask for a second opinion is not to suggest lack of faith in those treating you, but reflects a need to have assurance that all angles have been looked at and discussed. A second opinion referral is made by your G.P. You simply have to ask for it to be made and explain why. It is always a good idea to discuss this with your current immunologist first, to avoid any misunderstandings about why you are requesting a second opinion.
It is very important to me that I can relate easily to those treating me, I'm guessing that it is even more important for teenagers to feel relaxed and valued within the doctor/patient relationship. It is worth the effort of finding the right doctor for Curtis as he's going to be in a treatment relationship for a very long time.
Perhaps one of the most important things in all of this is for Curtis to start to feel he has some control over his life and treatment?
No doubt if he's happy, your life is easier too! It goes without saying that it is incredibly important for you to feel that you trust Curtis' team of Doctors and Nurses.
If you did want to seek a second opinion, the two centres that would be appropriate for you to be referred to are at Great Ormond Street London or Newcastle upon Tyne.
To end this long post, may I just re-iterate that the Doctor in Northern Ireland who caused so many problems, was not Dr David Edgar, who is well respected both nationally and internationally.
Liz.
I have been doing some asking around about this for you, Crocker. I'm so glad that you finally have a bed in the hospital for Curtis, but this may still be of help to you or to others in the future.
The three things that Curtis seems to be dealing with are :
1. poor treatment of his agammaglobulinaemia in the past, which has led on to
2. norovirus which will not go, which has in turn led on to
3. malnutrition.
Firstly, I am so sorry that Curtis has suffered at the hands of this Doctor, whom I understand was not an Immunologist and has left many a problem in his wake. If you would like to discuss this issue with me once you are happier about Curtis' health, my telephone number is on the website.
I understand that the first imperative is to get Curtis' trough levels up to a high level. This may mean that he has to have more frequent and higher doses of Immunoglobulin replacement. Whilst the recommended trough level (the trough level is the lowest level of immunoglobulins in our blood that we reach in between infusions) to keep us all well is relatively low, some of us need to have trough levels that are higher, to maintain good health. For example if my levels drop below 12, I get chest infections. In order for Curtis to be able to attack the norovirus, he will need to have really good trough levels.
There has been some work done by Immunologists to see if drinking immunoglobulin is of any benefit. The results have been encouraging, and this may be something to be considered in Curtis' case. In order to prevent the immunoglobulins being destroyed by the acid in the stomach, a drug called Omeprazole has to be given at the same time.
The last thing with regard to Curtis' immunoglobulin replacement therapy is that his Immunologist may consider changing the product he is currently on, to one which has a higher level of IgA in it. IgA is the immunoglobulin which a “normal” immune system produces in the gut, lungs and other internal surfaces. This then is the immunoglobulin of choice for attacking gut bugs. Most replacement immunoglobulin products do not contain much IgA, but there is one in particular which has quite a high level. This is currently not licensed, but, as with many unlicensed drugs, can be prescribed for a specific need.
I think it would be very helpful if you could discuss all of this with Curtis' immunologist.
Now onto malnutrition. Sadly, this is something that can happen to those of us with XLA and also (though more rarely) with CVID.
To deal with the malnutrition, the aim is to give all the nutrients and vitamins needed in a form which is easily absorbed. The current best method for this is by having a “drink” called Elemental. My understanding is that this doesn't taste too good, but I've never had it, so that may not be the case. I am not sure why Curtis is to have his nutrition delivered by n.g.tube, but maybe experience shows that teenagers won't drink the stuff! I am aware that some young people with Cystic Fibrosis (with whom we share some of the problems with lungs & gut) have n.g. feeding overnight and take the tube out before going about their daily activities. I understand that one young man inserts his own tube! (more brave than me).
I know that you've both had the trauma of being “treated” by a doctor who was not qualified to deal with Primary Immune Deficiency. I hope that you both feel confident and like the Immunologist who is currently treating Curtis, ( I don't know who this is) however, within the NHS as it stands, we are all able to ask for a second opinion. In cases as complex as Curtis', this is often a good idea. To ask for a second opinion is not to suggest lack of faith in those treating you, but reflects a need to have assurance that all angles have been looked at and discussed. A second opinion referral is made by your G.P. You simply have to ask for it to be made and explain why. It is always a good idea to discuss this with your current immunologist first, to avoid any misunderstandings about why you are requesting a second opinion.
It is very important to me that I can relate easily to those treating me, I'm guessing that it is even more important for teenagers to feel relaxed and valued within the doctor/patient relationship. It is worth the effort of finding the right doctor for Curtis as he's going to be in a treatment relationship for a very long time.
Perhaps one of the most important things in all of this is for Curtis to start to feel he has some control over his life and treatment?
No doubt if he's happy, your life is easier too! It goes without saying that it is incredibly important for you to feel that you trust Curtis' team of Doctors and Nurses.
If you did want to seek a second opinion, the two centres that would be appropriate for you to be referred to are at Great Ormond Street London or Newcastle upon Tyne.
To end this long post, may I just re-iterate that the Doctor in Northern Ireland who caused so many problems, was not Dr David Edgar, who is well respected both nationally and internationally.
Liz.
