Today I woke up and took Caileigh to school, her sinus infection is atleast under control and she wasn't coughing until she gagged so that is an improvement! I came back and fed Braedon and myself. We got some learning time in and working on his speech before laying him down for a little nap. While he slept I
We picked Caileigh up and headed to Denver. I was dreading this trip. We were meeting with Braedon's allergist group, known to shrug their shoulders at his perplexing continuation of symptoms but vague conclusions as to their cause always resulting in walking out the door still "giving his body time" to work through the proposed allergies (that through testings are never there). Today I was ready to fight. I had done some research and was coming prepared. I had insanely documented his diet and apparent pattern of symptoms over the last two months. It is a pattern that seems to last about a week and shows up every two weeks. It's extremely frustrating and heart breaking to watch your child in pain, throwing up, sore all over their bottom from the irritation and patches of eczema in spite of every attempt made to prevent them.
This last month was one of the worst yet. He had blood in his stools, running through him like nothing for a good week. During that time we had about 3 days of vommitting...not fun. He seemed to have trouble swallowing when he would eat and that scares a mom half to death. There has been no change in his diet. His allergy tests come up normal but the doctors are convinced it is proctocolitis....I don't think so.....
A very very dear friend of mine has three beautiful boys. Her middle son is nearly 2 and last year around his first birthday they diagnosed him with EE and EG (both incurable conditions...for now but can be medicated and with the right elimination diet can be controled). The only way to check for these and monitor their progress is through endoscopies and colonoscopies. After talking with her, we agreed the boys symptoms are very much the same or atleast very similar. Obviously there are different severities of these conditions.
Today I approached one of the doctors with this idea. She thinks it is worth looking at, which was totally NOT the answer I expected to hear. I was almost joyful! Joyful because maybe it is a step in coming to an answer. I would rather Braedon was diagnosed with proctocolitis...it can be grown out of over a few years, the other is very rare but is being diagnosed more and more as the research on these conditions becomes more indepth. We have been referred to a doctor at Childrens Hospital in Denver that has dealt with this special condition and is very experienced with it. I am praying he hears me out and gives Braedon the time he deserves to figure out what is ailing him. I don't want to watch him like this anymore but am quite aware that his problems could be so much worse.
Please pray for us, that the doctors are able to see him soon (there is typically a month to two month waiting list) and are open to looking at all options for diagnosis. Please pray that Braedon does not get so bad again, I fear we are heading back into another bad week and Soapy will go back to work Tuesday. Please pray for the P family and their son J as they are desperately trying to find an answer to his med intolerance.
Please also pray for Kate at http://www.prayforkate.com/ She has a brain tumor and is undergoing severe amounts of chemo right now. She is six and her condition is no way related to Braedon's...it is far worse and it is really burdening my heart to pray for her and share her story. She is six years old and from what I have learned as I follow them and pray for her and her family, she and her family are such wonderful, amazing, blessed, God-filled people. Please stop by her page and pray for them and pass it on to others.
Thanks, good night....