Saturday, November 3, 2012

Collin's Not So Common Variable Immune Deficiency

Our tiny little bundle

On June 23, 2001 we welcomed our second son into the world.  He was born four weeks early due to complications with the pregnancy.  He was a tiny little thing, but from the very beginning he had a drive to survive.  By the time he was six months he had his first respiratory infection and began nebulizer treatments.  Since we were living in TN at the time and it was winter we didn't think much of it.  In June of the next year we moved back to FL and his respiratory issues seemed to clear up for awhile.  At the age 2 1/2 we started becoming concerned with his speech delay.  After consulting with his pediatrician we began some intense hearing tests.  We were told that he had permanent hearing loss and was only hearing about 20%.  Around the same time we were also told that he was autistic, had ADHD, and some other disorders such as sensory integration dysfunction.  While none of the tests showed fluid on his ears, the ENT decided to go ahead and put in ear tubes since he was having to remove his tonsils and adenoids anyway.  When he came out to talk to us after surgery he told us he had never seen so much fluid on a child's ears.  It was packed in so tightly that it wasn't detectable on the tests.  After that he was a new child, behaviour wise.  He continued having speech therapy and we felt like he had been given a new lease on life.  We were dismayed when his ears continued to become infected.  He was the kid who always had cotton balls sticking out of his ears.  A couple of weeks before he turned 3 he had his first verified pneumonia.  We were leaving for a missions trip to Haiti and ended up in and out of the doctor's office the week before we left.
In Haiti 2004
The next few years we dealt with repeated ear infections and respiratory issues.  He was diagnosed as being allergic to just about every environmental trigger possible and with asthma.  We were told that they were the cause of the repeat infections.  The poor guy had mucous pouring out of some orifice on his head at any given time.  He took antibiotics off and on to keep things under control and we were told that was all we could do.  Things leveled out that way until the summer of 2011 when were were on deputation.  While we were doing some sightseeing in Boston he became very ill and ended up being diagnosed with pneumonia in his right lung.  He was treated and we went on our way.
In Boston summer of 2011

  That next school year was miserable for him.  He coughed and wheezed almost constantly.  He was off and on antibiotics and in and out of the doctor's office.  Towards the end of the year Harold flew a pediatrician from Samaritan's Purse to Haiti.  During the flight Harold went back and spent some time talking with him about Collin.  He suggested what we had already been thinking, that we needed to see a pulmonologist.  We made it our goal for the summer to get his pulmonary health up to par.  The first visit we were surprised to see how poor his lung function was.  A chest x-ray revealed lots of mucous pooling in his lungs.  He started on some new meds and seemed to be getting better.  We thought "whew, now we're getting somewhere".  He started the 2012 school year with a bang.  Two weeks into the school year he became very ill and we ended up in the ER where he was diagnosed with a severe pneumonia.  After hearing his history and seeing that he had a pneumonia in the exact same spot as a few months before the doctor ordered a CT scan and lots of extra blood work.    The CT scan revealed  bronchiectasis (scarring) in his right lung and a very suppressed immune system.  They now believe that he had pneumonia in his right lung for over a year.  We were told that we needed to get him in to see an immunologist ASAP.  The next week we saw Dr. Gary Kliener, who is now our hero, for the first time.
Dr. Kliener

  After spending an immense amount of time reviewing his history and blood work he told us that he believed Collin had Common Variable Immune Deficiency, an immune disorder that affects 1 in 50,000 people.  His immunoglobulin level was extremely low, causing him to be unable to fight off all of the germs he came into contact with.  It mainly affects the lungs, ears, and sinuses causing them to be infected almost continually.  This explained why he could go off a round of antibiotics and two weeks later be sick again.  The only treatment for the disorder is to have intravenous immunoglobulin infusions every 3-4 weeks.  While it is hard to know that this is something that, unless God intervenes, he will have to deal with for the rest of his life we are relieved to know that there is a treatment for him and hopefully with time he will grow stronger and stronger and be able to live a relatively normal life. 

During his first IVIG infusion
(Written the day of his first infusion)
Today my son recieved the immunoglobulins of approximately a thousand blood donors. Over the next year that number will climb to around twelve thousand. Purified, pooled together, and put into his bloodstream by IV they will give him the ability to do what he cannot do for himself, fight off all the "bad things" he comes into contact with everyday that causes his body to become infected or diseas...

ed. We pray that in the days to come he will grow stronger and stronger and his quality of life will become better and better. I'm so glad that we can also assure him that the blood of Jesus, given in one complete and total donation also has the power to do for him what he cannot do for himself, help him fight off all the "bad things" that he comes into contact with everyday that causes his soul to become infected or diseased. It's also easily accessible through IV (Immanuel's Veins) and not only offers a better quality of life, but eternal life. Just as he will have to have regular transfusions of keep his body healthy, he also needs regular transfusions to keep his soul healthy. It is our prayer for all of our boys that they learn early that there is "power in the blood" and it is at their disposal 24/7.

1 comment:

Juwah said...

Glad you are finally getting answers. Praying Collin gets stronger everyday.