Neutropenia Community Group

Neutropenia and how we survive...

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Heart, Blood & Circulation
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My story too

deleted_user
deleted_user
My name is Sherry and I have a 6 year old son named Michael with Severe Chronic Neutropenia. He is the youngest person ever diagnosed with this disease. He was dx'd at birth. He spent the first 5 days of his life in the Neonatal Intesive Care Unit in isolation while the Dr.'s tried to figure out why a newborn would have zero neutrophils.

Michael has been on Neupogen shots since birth. Currently he gets shots 3 times per week to boost his immune system. He has had 4 operations and too many hospitalizations to count. As he has matured, his illnesses have decreased. In the last year he was only hospitalizied once. We are able to keep his ANC above 200, usually around 1000 with the shots.

Michael also has autism, therefore, I do not have a good idea of how the Neupogen affects him. I would love to hear from anyone how the Neupogen makes them feel so that I can have a better idea of how it affects Michael.
deleted_user
deleted_user
Hi Sherry, Thanks for joining! You've got a beautiful family! God bless you for what you've been though. I can't even begin to imagine your fear. At least they figured out what was wrong and were able to save your son.

The new neupogen shot that they have come out with has really no ill side effects. It stings like hell when it goes in, but from my understanding, it is "time" released. The old stuff was like a concentrate. Went directly to your hip bones and forced your marrow to produce white cells. As in "my story", it was incredibly painful. Thank goodness for the new version.

Keep me posted on how your little guy is doing. Wishing you well....
deleted_user
deleted_user
Thanks Summer. What is the NEW Neupogen? I'm not sure if I use an old type or the new type. I get our Neupogen directly from the drug company in California. They send me vials which I keep in the fridge and draw my own shots. Michale's shots are subqutanteous, given in the hip. It seems to me that the vials and the med boxes look the same as they always did.
deleted_user
deleted_user
Hi Sherry, Sorry it took a while to get back to you. My hemotologist had told me that when I was first diagnosed he was glad I was in pain. It meant the shot was working. I dreaded getting a call from him, knowing I'd be crawling the walls not being in the hospital and getting the pain medication I needed to cope with the side effects. Then the one time I got his call to "do not pass go, do not collect $200" get to my office NOW! He said I was crashing but wouldn't be in any discomfort. He said it was a new derivative of the old Neupogen, brand new. Sorry I can't be more helpful. I just pray that is what your son is receiving now. I don't honestly remember where I got the first few shots I had, but the latest ones where in the muscle of my arm. Does your boy appear to be in pain in his lower back? If so, you definately want to talk to his hemo doc. I'm thinking chances are, he being just a baby and me coming down with Neutopenia before he was even born, that he has got the new version.
deleted_user
deleted_user
He does not seem to be in great pain and as a Mom, I would know if he was hurting. I can always tell if he has and earache for instance, or if he's sick he slows down a lot. The shots seem to hurt going in, he cries every time, but I don't see any lasting pain, so hopefully he has the new stuff. Thanks a bunch.
deleted_user
deleted_user
Hi Sherry,

Hope that Michael is doing OK. Have you guys tried any supplements such as Traditional Chinese Medicine's deer antler herb or straight bone marrow from out of the beef marrow bones to help strengthen his immune system? I tried them and they really helped me. My doctor let me suffer for over four years before telling me that I even had it. I chose to try other things instead of the painful shots and they work wonderfully. Good luck to you and Michael! ((hugs))