Brenton

(Above picture...Brenton with his balloons and teddy bear he got yesterday. Thanks Grandma & Grandpa Tadlock!)

I have skipped SO much of what has happened to us these last few months, but I figure, I'll just go back and update as I can.

Yesterday, Brenton had his tonsils out. A little over a month ago, he was diagnosed with an Auto-immune syndrome, which seems to get a great deal better (if not go away) with the removal of the tonsils.

Before we were told he had PFAPA (the auto-immune thingy) we were already debating whether or not he should have his tonsils out. He always gets sick, and he snored a lot, but mainly from his nose. (Not the deep snoring from the throat like Alex had.) Once he was diagnosed with PFAPA, we decided to have them removed. Of course, by then, the surgeon was booked out a few weeks, but we scheduled his surgery as soon as we could. For the last four plus weeks, we've been dealing with daily fevers and a yucky throat due to tonsillitis.


On another note, Brenton has had a "lesion" on his face since about April. (See above picture....his lesion is on his chin.) At first we thought it was ring-worm, and he was treated for that (which didn't work). Then we were told probably eczema, and he was treated for that (which also didn't work). Since neither of those treatments helped, they had to biopsy it.

I tell you, one of the worst things I've done so far, is to take both my boys to the Dermatologist office myself (not knowing that they would want to do a biopsy) and have to watch as six adult physicians and office staff held my 5 year old down so they could give him the numbing shot, do a biopsy, and then do three stitches to sew up the biopsy site. What made it so much worse, is that we didn't prepare him for it, since we didn't know it was going to happen that day. He just kept screaming, "I don't want to have a shot in my face!" over and over again. He was so upset, he almost threw-up several times, while trying to climb on anything to get away from the physicians and office staff. Alex started crying and hitting people because they were hurting his brother, so I had to concentrate my energy on holding Alex back. One of the office staff in the room, started crying. It was all I could do to keep myself from crying. I kept telling myself that I was the adult, and I had to stay strong for my kids.

When we got out of the room, and met the receptionist at the desk, I noticed SEVERAL of the office staff had been crying. The receptionist asked, "Was that your boy crying? That was so sad!" Let me tell you, I don't think I've ever left an office so fast.

Anyway, the results of the biopsy came back as "Follicular Mucinosis". We now know what it is, but no idea what has been causing it. Follicular Mucinosis is usually found in older men who are diagnosed with Lupus or Lymphoma. Brenton tested negative for Lupus (another blood test, another story), and one test has come back negative for Lymphoma, but they won't rule that out 100%. Since he does not have Lupus, they have no idea how to treat his lesion.

We have been referred down to Primary Children's Hospital in Salt Lake City, Utah, to the pediatric departments of Dermatology and Rheumatology. His appointments down there are December 15th and 16th.

The Dermatology department up here has been amazing. They have even taken his case to society meetings that have many members or both Dermatology and Pathology, to try and figure out why he has this lesion, and how to treat it. They have recommended several additional biopsies, and many other treatment options. Our problem with that is, his lesion may (or may not) be related to his PFAPA syndrome. Since it's an auto-immune problem, as is Lupus, it is possible that it could be related, although there is no research (the our current Pediatrician or Dermatologist) could find.

Since the referral from both our current Dermatologist and Pediatrician, the Dermatolgist has changed his mind. He thinks they can figure out how to treat his problem up here. Our Pediatrician does not agree with that. She acutally told me that she feels we've wasted enough of our money and time trying to guess what's wrong with him and how to fix him. We need to go somewhere that can actually help us. (We LOVE our Pediatrician!) So, we have decided to forego all additional testing here, and wait for our appointments down there. She is hoping they will know how to treat his lesion, his auto-immune problem (if it has not been cleared up by his tonsil removal) and find out what caused his lesion in the first place. Our main concern, is why it's there. No one has any answers for us, just lots of guesses.

Anyway, that's what's going on with Brenton. He's been a great trooper, and we are anxious to get this all taken care of. We have had amazing support from everyone up here, and of course our family. Lots of prayers have been said in our behalf, and we thank you for that!