Wednesday, October 1, 2008

Thanks be to God!!!!

Where do I start? Well, first, there is still no baby; any day now is the answer to the question that I have heard at least a hundred times today!!!

AJ had a follow up appointment with the immunologist yesterday afternoon. About two months ago, the treatment plan they had created for him began to stop working. We noticed decreased lung function, increased childhood illnesses (i.e. clods, ear infections, strep throat, and a bout with pneumonia) along with increased white blood cell count. In all honesty, we have never been given an actual diagnosis. All they have been able to determine up to now was that he has some sort of auto-immune disorder combined with reactive airway disease (just a fancy way to say asthma.

The auto-immune part simply means that his immune system never shuts down. There are no tell-tale signs that he will be getting sick. With a “normal” immune system, your body gives warning signs, low grade fevers, flushed cheeks, runny nose, coughing, sneezing, you get the point. The problem has been that AJ always has these primary symptoms. There are no true warning signs; he goes from what is “normal” for him to very sick, at times requiring hospitalization with in a matter of minutes. We have been extremely lucky to have the physician that we have for him, he has meet us at his office even when he was on vacation, to prevent AJ from having to be hospitalized. The issue with sending him to the hospital is that AJ usually will end up with a secondary illness or infection just from being there, so we avoid this at all costs.
Back to part about his follow-up. We have been seeing the immunologist at least every two weeks, in an attempt to find some sort of treatment plan that would allow AJ to function as a “normal” 6 yo and prevent him from having to spend the next few moths of flu and pneumonia season behind closed doors in our home, out of school, and away from his friends. Week after week we have gone back and while he has always showed some sort of improvement in some areas, it has not been enough to satisfy the Dr.’s or us. Yesterday we went in, same story, improvement, but not total improvement. The primary issue has always been the decreased lung function because this leads to a lack of oxygen that will be delivered to his brain. Frankly it leads to issues that I would rather not think about, let alone discuss!

So with the follow-up evaluation not leading us to where we wanted to be, they began to run some more tests. A breathing/lung function test was run and the results were not horrible but they were not great either. There are three main parts they look for in these results; first is the lung capacity, then it is the capacity/function of the bronchial tubes, then it is the capacity/function of the alveoli, there are some other numbers, but they are not as important as the first three. AJ’s results for total lung capacity were 100% which was great news!!! The results for the capacity/function of the bronchial tubes were 82% which was not too bad. The results for the capacity/function of the alveoli were 47%. There was the problem, he has no problem actually breathing in the air or allowing the air to travel to the alveoli through the bronchial tubes, the problem exists once the air reaches the alveoli. Only 47% of the air is actually breathes in is being transferred into his blood stream. After performing the lung function test with no meds, they repeated the test after he was given an inhaled steroid. The results improved dramatically; ideally they look for a 12% increase in the results. According to the immunologist, anything less than 12% and the condition is likely irreversible. AJ’s results went from 100% to 103%, 82% to 98%, and 47% to 92%!!!! Thank you Jesus!!! Not only do we now have a condition to work with, but we actually have an answer, and we know that there will be no long term, lasting damage or effects. AJ will remain on a potent inhaled steroid twice a day for 8 weeks and his nebulizer only as needed.

This really was great news, but still was a bit perplexing, why has he had all of the problems he has had if this is the only condition we have seen? On to another set of tests. They ran a three panel set of allergy tests to see which allergens he reacted to. Let me tell you the results were highly surprising!!!

Panel 1 deals with outside allergens, such as pollens, weeds and grasses. Panel 2 deals with inside allergens such as dust mites, fungi, cats, and dogs. While panel 3 deals with food allergens such as milk, eggs, corn, wheat, soy, oats, peanuts, chocolate, and shellfish.

AJ has severe reactions to ragweed, cedar, oak, elm, pine and pecan pollens – not too surprising there! He also has moderate reactions to cats, dogs, fungus and pecan nuts. He has an allergy to cockroaches. What??? I will be sure to tell him to stop eating those! Where does some of this come from??? The surprises came in the results of the third panel, the food allergens. We already knew that he has severe allergies to shellfish; however, he apparently has sever reactions to milk and corn as well. The final piece to the puzzle!

His body has been attacking and attempting to defeat the allergens that are in the food he eats. His immune system was not up to par to fight regular everyday bacterium and viruses because it was focusing on keeping him from getting sick from the foods he has been eating. We now have a plan of action, and it has been given to both the daycare and the school, and we have all been armed with the Epi-Pen!

I am so relieved that we finally have answers to all of our questions, and with minimal effort, we can remove these items from his diet and his immune system should fully recover!! Praise the Lord!!! After all of this it seems so simple.
I will update about his progress, and hopefully his full and complete recovery with in the next few months. Maybe there will be baby pictures up by this weekend???!!!


Erin said... does this mean they FINALLY know what's wrong? And it can all be handeled with an inhaler and changes to his eating???? That is amazing, I hope it all works out for good this time! I'm not even going to ask how you're doing...but I'm saying labor prayers for you :)

amy <>< said...

Yay! That's wonderful!!

I CAN'T WAIT to see baby girl pictures... hope it's soon!!! :)