Neutropenia

Basically, to make a very long story short....Morgan probably has a rare blood disorder called neutropenia.  There are different levels within your white blood count and the neutrofils are the ones that are the main defense against infection.  The test with Dr. Flippen showed Morgan had none.  There is no easy way to know if the 0 level was the bottom of a one week long cycle as in Cyclic N., or is just temporarily 0 with a couple other Neutropenia types OR permanently 0 as with Severe Congenital Neutropenia.  There are about 5 kinds or neutropenia. 

Best Case Scenario is that Morgan has one of the 4 temporary kinds that will just last a few years.  We would just have to be extremely careful about her catching things and she would have daily shots for a few years.  Our lives probably would not be all that different than they are now since we haven't been doign many playdates anyway.

Worst Case Scenario is that it is the Severe type which puts her at a very high risk of infections.  This is called Kostmann's Syndrome and it used to be that most did not live past their teenage years with it.  However, with dailyinjections (Gcs-f) most people live manageable lives as the shots help to raise the bodies neutrofil levels again.  I'm assuming its just finding the correct balance with the injections because its very variable on how much each person requires.  The bad news is that he said 25% of the people that get this type of Neutropenia, get AML ( Leukemia) from ages 5-15.  I read somewhere else online that the odds are 9%.

Basically, they took a lot of blood today and we are starting the process of ruling things out.  At the longest it will take 4 or 5 weeks to know exactly what she has.  If she gets an underarm fever of 101 or higher, we are to go directly to Temple and admit her.  Her dr. recommended going there instead of st. joes bc of the drama going on there with the med.  If she gets admitted in the next month, they will go ahead and take some bone marrow by putting her under and taking it out of her hip.  At that point, we'll know within 24 hours which kind she has.  We might still have to do the bone marrow test in 4 weeks to confirm other blood work.  He said that the recovery for that is nothing for little ones and that they bounce back really fast.  Of course they would put her under general anesthesia.

So, even if she has the worst kind, she can still live a manageable life as long as she does the shots daily.  Basically, with these shots, they build up her neutrophil levels so she can fight infection but we would just need to be vigilent if her fever gets over a certain level.  Its hard bc this disease is SO rare but from what I can tell, there are still people that go to college and do normal things, they just have to be careful when they do get sick.  In true Karin fashion, my first question for him was if she has Leukemia.  He said that with how the rest of her levels are, that the chance she has leukemia now would have to be very slight so that is obviously good.

For the next 4 weeks, we need to get the finger prick blood test 3 times a week to look at her levels over a scope of time.  This can be down here in town.  If her Neutrophil levels at any point get over a certain count,   it will automatically rule out the worst kind.  If not, it doesn't mean she has the worst kind, but we just need to wait and see for other tests.  In about a week we will get some results back showing if it is Autoimmune N.  This is a temporary kind also where the bone marrow is making antibodies that acutally attack the neutrofil.  This would be fixed with the GCS-F shots.  I told him she had been on bactrim for the mrsa infections and he said bactrim can at times cause another temporary form called Transient Neutropenia.  I then told him that I was on it a lot when I was breastfeeding her.  She hasn't been on the bactrim though in several weeks and he wasn't sure how much gets through breastmilk.  

Here is something I found online that kind of describes things: http://www.scner.de/handbooks/handbook_en.pdf

I have not handled this super well today but as I write this email I realize that Morgan more than likely will live a normal life.    As you can tell, I just want to know which she has so we can begin to manage it.  Please pray we find out something very soon and that I keep a positive attitude - that I won't be discouraged if her levels aren't rising like I want, in the timeframe I want.  Pray I stay focused on Him and how to best make Morgan as happy as possible during this time of bloodwork and tests.  Fortunately, her tongue scab came off yesterday and she started eating some this morning. Please pray that we handle this waiting game well.