Sorry for the delay updating. You know how they say, if you don’t hear from the doctor, it must be good news. Well, if you don’t hear from me, it means the same thing. :) Carter’s bone marrow biopsy didn’t show anything of concern. There is still no explanation as to why he temporarily stopped producing red blood cells or why he has a high MCV. The doctors were encouraged, however, after the biopsy and felt a lot better. They were able to rule out anything serious at this point. They are going to continue following him every 3 mo or so to ensure nothing “evolves.” At last check, his hemoglobin was 10.6 and his MCV was 104. His hemoglobin is still below the normal low (11), but he is not transfusion dependent and can live a normal life at this level. He may always be mildly anemic, but it doesn’t seem to be affecting his daily life right now. I did read something online that said sometimes macrocytosis (large MCV) can be developed during recovery of Transient Erythroblastopenia of Childhood (his original diagnosis). I have not asked the docs about this yet, but if this were true, I would assume things would start to normalize. Not sure what is going to happen if his counts continue to read badly. He doesn’t go back until the end of May.
He saw Orthopedics last week and the curve in his back has not changed. It is a 24 degree curve. Dr. Loveless doesn’t think this will ever be an issue or that he will ever have to intervene to correct the curve. We don’t go back for a year.
His genetics appt was yesterday. Dr. Perszyk is basically monitoring his growth at this point. He had a bone age x-ray when he was 16 months and the bone age was 18 mo plus or minus 5 months. So, his bones were growing chronologically, which is good. At that time he had the height of a 7 mo old and the weight of a 6 mo old but his bones were growing at the rate they were supposed to. This just means he would be a small adult. At 2 yrs old he measured 29 ½ in and his estimated adult height was 4 ft 11 in. Based on his height yesterday, he would be 5 ft 2 in. He did another bone age x-ray yesterday. This will determine if his bone growth is behind, chronological, or advanced for his age. If it were behind, it would cause late puberty and give Carter more time to grow but it may not be until college age. If it were advanced, puberty would be reached early and this could cause him to be very short. We want it to be chronological. If it were either delayed or advanced, more tests would have to be run to determine what is causing his bone growth to either slow down or speed up. In my opinion, Carter is fine and will be exactly how tall he is supposed to be. I don’t think anyone can say for sure how tall your child will be. I would call all of this GUESStimates. He doesn’t appear to have any problems intellectually, physically, etc…. He keeps up with all the other kids his age with no problem at all and is a star on the ball field. :) The doc did say to be encouraging and not to always talk about his abnormalities. In other words, don’t make him think that something is wrong or that he is different. I don’t think this really applies to us now, but may later as he gets older and starts to understand more. Carter will be Carter and he is his own unique person made perfectly the way that God wants him. I’m confident of that and am not struggling in the least bit over his growth. I do feel though that it is good to have it monitored and I wouldn’t rule out growth hormones should he NEED them LATER in life, but not now and not without much research, consideration, prayer, etc…. This is where endocrinology comes in.
He goes to endocrinology tomorrow and I’m expecting this to be a long, informative visit. I know they will be looking at his bone age x-ray and will also order more testing which I will do. I don’t want to deny anything that may provide answers. I just want to be very careful. Sometimes, docs just want to throw “fixes” at you and it may not be the best thing. Carter is not even 5 yet and we have time. In addition, with us not knowing for sure what is going on with his blood, I would not want to do anything that could jeopardize his health in that area. For instance, if he were to start on a hormone, would his marrow even be able to produce enough blood for his rapid growth? Lots to think about and hopefully we will have more answers by summer. I am so thankful for doctors and medicine; I just want to be smart and discerning through all of this. I’m looking forward to seeing how genetics and endocrinology will work together. Dr. Perszyk even mentioned sitting down with both Justin and I later on to talk through everything. Finally, I am learning as I go and may sometimes not be clear or quite accurate. As I learn more and things are revealed, I will update. Thanks for your prayers!
