Dawn: frontal bossing

[Guest guest]

Hi Dawn, I'm pretty behind on email once again but had saved your note to answer last week. Thanks for the information about . I had also done a search and came up with something similar - a hematologist in North Carolina had done a power point about hemolysis and it was mentioned. It said that one of the signs of hemolysis is increased frontal bossing ? It said that increased erythropoietic (sp?) activity (making more red cells) which expands the marrow spaces and the long bones of the face are affected. what does not fit is that Sam has bone marrow failure (so does ). so I did not think he could muster an attempt to step up rbc production. On the other hand maybe the diploid spaces expand simply because they are TRYINg to make red cells - whether they can make them or not being another issue. I emailed our primary and hematologist about this. Primary had never heard of it but said it make sense. Hematologist never answered me. I'll have to re-email him or track him down. Did they explain any of it with - why the spaces would expand if she can not make red cells? Other than that the explanation fits perfectly especially because Sammy has severe hemolysis issues right now. We're at a point where he is needing blood 2-3 times a week and that is an adult unit. It boggles my mind. Yes he bleeds - so that is part of it but he is hemolysing as well. I think I told you he is on desferol - we run it 24 hrs a day and it seems to be keeping the ferritin between 2500 and 3000 now. It was 4000 when we started. Anyway, as it turns out Sam is having a head MRI tomorrow. he is being admitted for a week and we need to get a head MRI because he has had an pretty progressive loss of strength and now spasticity in first the left leg and now the right. he is very unstable on his feet. Since April he has had episodic changes in consciousness/cognition/personality. WE talked with neuro on Friday and he wants the MRI pretty much NOW. I assume they will see these enlarged marrow spaces on the MRI if he has them - is that correct ? I'll try to update my caring bridge site when I know as we'll be in the hospital until the weekend. Thanks again for the help. I was so glad in a sense that you had seen this too. It has been bothering the nephrologsit and intensivist and I and none of us had ever heard of the marrow expansion before. Never even thought to run it by the heme. I read the list whenever I can though am often weeks behind...sounds like you have your hands full as always with those 3 wonderful kids and your own health issues. I think of you and many on this list often even if it is silently.Annewww.caringbridge.org/wi/zachsam