Update On Taylor.... So Many Unanswered Questions.

Today was my son Taylor's appointment with the cardiologist. He gave me some information that I was unaware of, but I left feeling like I had less answers than when I started.

When I got there the cardiologist had read over Tay's chart, and he came in and listened to me recount the events of the last 7 months. After hearing Taylor's story, and examining him - his swollen eyes, swollen finger and toe joints, rash under his arms, and severe pain in almost all of his joints, he said that he did not want to do the eccocardiogram. He said he would do it, because it had been requested by the rheumatologist, but that he was very afraid of the fact that the rheumatologist was basing Taylor's diagnosis on the results of the eccocardiogram. He said that he's an old/experienced doctor, and he HAS been involved in cases of Rheumatic Fever, and Taylor has all of the classic symptoms. He explained that Rheumatic Fever does not usually cause heart damage on the first occurrences - at the onset of the disease. It can - but does not usually. He said to base the diagnosis of RF on normal results of an eccocardiogram would be very unwise - which is what I, and he, understands the rhuematologist to be doing. He continued to explain that a child will have the onset of Rheumatic Fever, with the symptoms that Taylor is experiencing, and then the next time he's exposed to the strep virus, he will have another outbreak, for lack of better words, (I'm trying my best to remember the wording of the doctor!). Each time the child is exposed to the strep virus, if they are not on the Rheumatic Fever treatment of daily penicillin, they will have another outbreak. With each occurrence, or outbreak, the child is at risk for irreversible heart damage, leading eventually to heart failure, if not receiving treatment. It's not a matter of "if", it's a matter of "when". The irreversible heart damage WILL begin at some point, in an untreated child with RF. As soon as the heart damage begins, it WILL CONTINUE at that point, with each occurrence of RF. Once the damage has been done, it cannot be repaired, it is irreversible, and without treatment, it will continue to damage the heart, leading to - well the worst, which I won't even speak. (By the way - the eccocardiogram results were completely normal, as the cardiologist suspected they would be. He has a "harmless heart murmur" only, at this point.)

So.... Now I have quite a problem. First of all, whether anyone believes me or not, God revealed Rheumatic Fever to me, way back in the beginning, when Tay was having major hip pain and his ASO Titer was high (strep in his blood). No one would listen. The horrible Dr. Pierre, in Ocala, FL, got angry with me for questioning her when she told me "He's just resistant to the antibiotics. There's nothing we can do about that", and I finally got someone to take notice at All children's Hospital, 2 hours away from home. And now, I am going to go back for a follow up with the rheumatologist at ACH, and it's quite possible that he is going to look at Taylor's eccocardiogram results, and misdiagnose him, putting him at a huge risk for his life.

Again, I will say, VERY CLEARLY, that God has my son protected, and when all is said and done, he will be just fine. I know this. But I also have to be wise, and follow my motherly instincts, and God's direction that He has given me, and protect my child. I can't allow him to be misdiagnosed, just because this is a rare disease that a young rheumatologist is not familiar with. I can't let it get to the point of irreversible heart damage, before someone realizes they made a huge mistake.

So I am going to go to this follow up appointment and see what the doctor has to say. If he says it's nothing, and can't give me the exact reasons and FACTS that led him to that decision, than I will go to yet another doctor. I need to research if a rheumatologist is the right doctor to see for a second opinion on rheumatic fever. A rheumatologist is for rheumatoid arthritis - There might be another type of doctor that has more of a specialty, more knowledge, on rheumatic fever. I really don't know, I need to figure that part out.

Right now, I know that there is something terribly wrong with my son, that has him in daily pain, missing tons of school, and that has had a major impact on his quality of life, for almost 8 months now. I need answers, with facts and reasons to back them up, not guessing games. To hear my son tell me, "Mommy, I just want this pain to stop. I'm in pain every single day, and I just want to know WHY I'm in this pain, mommy", it just breaks my heart.

Taylor has a call of God on His life. God has amazing plans for this little boy. And with a big call, comes big attacks from the enemy. This will be part of Taylor's testimony, his struggle he went through at age 9, that God walked him through, holding his hand the whole way, and laying in the MRI machine with him. :) Taylor and I KNOW that God has angels around him, protecting him. We KNOW that there WILL be answers, and there WILL be an end to this. Right now, we have no answers. But in the words of Taylor, "God doesn't do things right away most of the time, right mommy? Sometimes He wants us to go through something, so we can learn to trust him, and learn to be strong and know that He will protect us. But then He does miracles! God is going to do a miracle for ME, mommy!" Tayor is exactly right. Preach it, my sweet boy!

Please keep Taylor in your prayers. And his momma too. This is really hard on a mother. But all I have to do is look back at the past, and see all the miracles God has done in my life, all the things He has brought me through, and I know that without a doubt - IF HE DID IT THEN, HE'LL DO IT NOW! God will never leave us, nor forsake us.... He promises us that.

Love and thanks to all, for your support and prayers.

XOXO,

Ginger