(update and letter to Dalton regarding his dr's appt. today)
Dalton---Mommy is so relieved to have an answer. I have waited THREE AND A HALF years to walk out of that Dr's office with an answer to the very well known "mystery boy"
Dr. Dobratz is amazing. He literally does research right in front of Daddy and I. I know you were so not a fan of the blood work and that simply tears me apart inside. Now that you are older you remember the pain and the specifics, like the room and the grey chair and the man with blue and white clothes :(. It breaks my heart to tell you that we are nowhere finished doing that either. We have to go back next week for more blood work and then the week after that we see the Hematologist and honey, he is a speciality blood Dr. Mommy and Daddy are gonna have to start thinking of some really good bribes :) Stickers and suckers aint cutting it!
After 3 long hard years Bubby you have a disorder called "Cyclic Neutropenia" What is that you ask? Its a rare blood disorder that causes your white blood count to drop to low when it assumes infection in the body and this happens approx. every 21days. (Hence the word cycle) Also "nuephritals" are these specific white blood cells and anything under 2000 is dangerous. Today, my tough little buddy your count was ONLY 624! Mommy was scared but I didn't show it to you. I plan to grab this bucking bull by the horns and hang the hell on. We have an answer Bubby!!! Mommy isn't crazy :) Well not technically.
What causes it?
The causes of Neutropenia can fall into three categories:
1.Decreased production in the bone marrow resulting from a hereditary disorder, cancer, medications, radiation, or Vitamin B12.
2.Increased destruction from aplastic anemia, autoimmune neutropenia, and chemotherapy.
3.Marginalisation and sequestration caused by hemodialysis.
The causes are from the side effect of certain medications, such as diuretics or antibiotics, leukemia, viral infections, such as mononucleosis or AIDS, bacterial infections such as tuberculosis, and certain autoimmune disorders, such as lupus or rheumatoid arthritis.
Whats the treatment?
Well, there really isn't any, once you have found this disease they attempt to link it elsewhere and you gain treatment according to that diagnosis.
So I should be getting a call from Children's Mercy Specialty Center soon. The Dr's have already been in touch.
FYI...for all of my fellow readers. It has been exactly 23 days since his last 104 fever that lasted 4 days. Whew!!....what an answer!
Any prayers would be great but I am certain all will be fine! :)

WOW! Did they never do a complete blood work on him before? I'm SO glad you got some answers! Relief.....then prayers for what the future brings with his disease. Love you.
ReplyDeleteGlad you have an answer even if it still may be a long road...just knowing the road goes somewhere other than a dead end. You and Russ & Dalton will be in my prayers as they run more blood work and help you on your journey to a healthy boy!!!
ReplyDeleteKnow that I am here! You all will work through this just as you have for the past three years!! You are a team, and you WILL get through this!! Glad answers are coming in finally!! Love you all!
ReplyDeleteSo what's the plan then? Do they just try to figure out WHICH of those things are causing it and go from there?
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