Monday 30 April 2007

CT Results

Last Thursday James and I went off to see the Lung Specialist once again, this time for the results of his CT Scan.

Although we were not suprised to hear the results, we were still disappointed that it did actually come back as we expected. The CT Scan showed that James still has a lot of congestion involving the bottom part of his left and right lung. The radiology report states that it is worse then the CT that was done last year. (At that time he had a more general CT because we did not know what was wrong with him, they also thought he had some sort of pneumonia or croup and so did not pay closer attention to this problem.) The Specialist stated that if this is the first time they were seeing this they would think that James had a bad case of pneumonia, but we have now been seeing this for a year and it is not clearing up on it's own. We can only wonder if the recent antibiotic treatment was of any help as we do not have a directly before picture to compare with ... all we know is that it's been getting worse over the past year and all the more "mild" treatment options have been used.

At this time he has simply classified James as having chronic congestion. Where has this come from? It is believed that the majority of it stems from the chronic aspiration, which we now seem (key word) to have under control with the Losec medication that he is taking. As well the congestion comes from previous and/or current infections. These infections likely would have come from the aspiration/food particles left in his lungs. We are not sure if the antibiotics cured the infection, but he figures it is now more likely he has chronic congestion then an ongoing infection as clinically he appears to be doing better ... unfortunately radiologically he does not. We also do not know how much inflammation versus scarring there is in James' lungs. Once you have scarring there is no recourse and the lung function has been reduced forever.

What is the next step? James has been put on a new drug called Prednisolone which is a form of Prednisone. Many of you have probably heard of this drug - it is commonly used for asthma. Used short-term this drug can have side effects, but long-term it can REALLY have side effects. Sometime we wonder if it's better not to know too much and to be left in the dark ... but yet we realize it's wise to be informed. What is considered short term? that depends on who you ask I guess ... according to most internet sites it's around 7 days of use, according to our doctor the long term effects come after 2-3 weeks of use ... either way it doesn't take long to reach the long-term usage point and James has been prescribe to start with one months usage, so either way he falls into long-term use.

Our doctor advised that most tolerate this drug okay for short term use, and so far James is tolerating it okay. The most common short term effects are upset stomach, increased appetite/weight gain, insomnia, mood swings/depression, a round/swollen face and excess sweating. Reading up on it I found many people complained about these symptoms, that they simply felt awful on the drug. Not very comforting, so we will continue to watch James carefully.

Prednisone is a steroid ... it is a corticosteroid or cortisonelike medication. Our body naturally produces corticosteroid. These chemicals are involved in various regulatory processes in the body (such as those involving fluid balance, temperature, and reaction to inflammation). Long term use of this drug depresses the ability of your body to produce corticosteroid. A drug like Prednisone suppresses inflammation, but this means that is also impairs the body's natural immune response to infection and makes you more susceptible to infeciton. As well it impairs calcium absportion and new bone formation which means that is causes or increases osteoporisis risks. It also causes thinning of the skin which in turn makes for easy bruising. This on top of all the short-term effects which often don't disappear but only lessen with time. Prednisone is also not something that you stop whenever you feel like. Your body stops producing on it's own and so it needs to be weaned off the medication or you could find yourself in even more trouble

So why put him on such a drug? How true are all these symtpoms? Are the benefits worth the risk? What are our other options? Of course we always hear more about the bad side of things then the good, so we like to think that these side effects are not as real as the information provided, but yet it seems many webpages with personal testimony testify that the symptoms do indeed happen. We are sort of feeling that at this point we have no other options but to try this drug. Our Specialist has stated this as well ... he said he treated James in a very aggressive manor with regards to the antibiotics and did not see a positive result. Our only other options are to wait and see if it clears up on it's own, which is highly unlikely given the way it has gone so far or try long-term antibiotics, which have not seemed to help and can do more damage to James' colitis. Prednisone is the last attempt before having to do an Open Lung Biopsy and some brief reading on this type of biopsy tells us we should give the Prednisone a chance before subjecting him to such a test.

If we are able to clear up the congestion will it be permanantly gone? This question is impossible to answer as we are not 100% sure of the cause but are assuming it is from aspiration and infection. If we can clear the congestion, treat the reflux and aggressively treat any future infection we can only hope that the congestion will not come back. But for the time being we have to first get rid of the congestion.

So at this point we have given it a go with the Prednisolone for one month, he will have a repeat x-ray at that time to see if we have made any progress. James has been given anti-imflammatory dosage versus an immune suppressant dosage, but yet the doctor did state that this dosage would also calm the immune system and make him more suseptible to infection once used over a period of time. The question is a matter of when to become worried about such side effects and so we felt it is just easier to try and "isolate" James (if such a thing is possible when you have a sibling in school and spend lots of time at the hospital) sooner then later. We will reevaluate this at the end of the month also, when we know if he'll have to stay on the drug and also by that time the weather will be nicer and hopefully less bugs floating around. So ... don't be surprised if you hear me ask "does anyone have any sort of cold or illness in your house?"

On the bright side ... prednisone will be helpful for James' colitis as it works again all inflammation in the body ... and ... an increased appetite and weight gain works in James' favour. The Lung Specialist also stated again that he is amazed at how James' lungs always sound clear when he listens to them.

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