Guest guest Posted February 1, 2010 Report Share Posted February 1, 2010 Dear Jeane, My son has Immunodeficiency and gets IVIG monthly.....  But he also has Neutropenia and leukocytopenia, and thrombocytopenia.......these are from a separate part of the immune system......and represent a bone marrow problem.  My son was having low white blood cell counts for years....we already knew that he had low antibodies. Most of the doctors blew off these low white blood cell counts. Until one day, his dermatologist did some labs because of a fungus on his hand and she called and said I need him to see a hematologist right away. His neutrophil count was very low as was his white blood cell count. He also had terrible chronic mouth ulcers.  Then my son got very ill, and his white blood cell count went down to 1.2 and his neutrophil count was severely low and his platelet count was very low. He had severe mastoiditis, pneumonia, C-diff infection in his intestines...he was getting sicker and sicker.He's had sepsis and meningitis.The local hematologists said they didn't know why, nor did they investigate.  Thanks to some wonderful advice from parents on a neutropenia group, I took my son to a bone marrow specialist at Cincinnati Children's Hospital...he did a bone marrow biopsy and found the cellularity of my son's bone marrow was only 20% (should have been 80%) He said he needed to be started on Granulocyte Colony Stimulating Factor (GCSF, NEUPOGEN) shots 3 times a week. His bone marrow was not working well enough and he needed this to force his marrow to produce more WBCs.  Now he has normal WBC counts and neutrophil counts, gets much less infections....he is also on IVIG..  Low WBCs in your child may be signalling a bone marrow problem...this should definitely be investigated....its a different part of the immune system than the IgG but still part of the overall immunity.  How is her WBC differential such as the Neutrophil count (segs...granulocytes)?  I think she needs a Bone marrow biopsy....to make sure she doesn't have a failing bone marrow.....You should see a hematologist soon.   Please don't make the mistake I did....I waited longer than I should have and my son's health suffered.  Now with the IVIG plus the Neupogen his counts are good and he rarely gets the awful infections he did before.    (The cause of his immune dysfunction and other health issues was found to be a chromosome disorder, faulty genes on chromosome 16.)  Please get that hematologist appt soon.....have her see a good one, someone who can find out if the cause may be related to a bigger disorder.   I know it's scary, but that low white count is worrisome.  Please keep us updated.......hugs....Sue in New Orleans      From: Jeane <maryjeanedavis@...> Subject: Low white cell count Date: Monday, February 1, 2010, 8:13 AM  Hi, I don't post very much at all because generally my daughter has done very well with IVIG infusions. She has PID but the infusions have really done the trick for her. She is quite hardy now and rarely get anything illness wise that anti-biotics can't handle. Anyway, the question I have is that the last set of labs she had drawn before her infusion showed that her white count was dropping below her already low normal count. It has always been around 3300 but now is about 2500. Out immunologist was alarmed by that and wants us to go see a hemotologist. Anyone had experience with this happening? Does the wbc count run low in kids with PID? Why would it all of the sudden start dropping? I am a little scared about this and would love some insight from others that have dealt with this. Thanks, Jeane Mom to andra 13 PID, FG syndrome Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2010 Report Share Posted February 2, 2010 Thanks so much for the detailed reply. We are in the process of making an appointment with a pediatric hemotologist. You have shared some good information, so I can go armed with some questions. Thanks again, I will let you know what happens. Right now, is actually very sick, so I am very anxious about all of this! Jeane > > > From: Jeane <maryjeanedavis@...> > Subject: Low white cell count > > Date: Monday, February 1, 2010, 8:13 AM > > > Â > > > > Hi, > > I don't post very much at all because generally my daughter has done very well with IVIG infusions. She has PID but the infusions have really done the trick for her. She is quite hardy now and rarely get anything illness wise that anti-biotics can't handle. Anyway, the question I have is that the last set of labs she had drawn before her infusion showed that her white count was dropping below her already low normal count. It has always been around 3300 but now is about 2500. Out immunologist was alarmed by that and wants us to go see a hemotologist. Anyone had experience with this happening? Does the wbc count run low in kids with PID? Why would it all of the sudden start dropping? I am a little scared about this and would love some insight from others that have dealt with this. > > Thanks, > > Jeane > Mom to andra 13 PID, FG syndrome > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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