Son has benign neutropenia and i have lots of questions..

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Jane - posted on 02/25/2014

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The national neutropenia network is a great resource and place to start. Was there something specific you were wondering about?

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Jane - posted on 02/26/2014

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That was my son EXACTLY but we never had the FTT or NG tube. My son is AIN and even though he wasn't having lots of fevers, we put him on neupogen at the advice of some of the top neutropenia docs in the country because he was having changes in the bone density in his teeth (which is also common).

Going on Neupogen COMPLETELY AND TOTALLY eliminated the not eating and stomach pain. At the end of the 9 days on neupogen he had grew 1" in height and gained 2 POUNDS!!! For comparison, it had taken us the previous 11 months to gain 2 lbs. I know this isn't in the research as an indication for starting the med, but the research out there on fringe effects is so so so sparse because they're so focused on finding out cause and cure, plus it's such a rare condition that not many resources are going to study it. Our hematologist initially dismissed our feelings that the weight gain was related to the neupogen (that happened when we put him on it temporarily once after a hospital stay...after the 9 days he went off it) but when we put him on it "for good" 6 months later and he had similar changes in growth, they were forced to admit it was likely related. --Well for goodness sake, just because you don't have a fever doesn't mean you feel good. And if you don't feel good, who want's to eat very much?! Lots of these little guys just live in a constant state of "not feeling good" and don't get the neupogen because they're not often life threatening. IMHO, a broken leg isn't life threatening either, but we'll still put on a cast and give someone crutches till they get better...but I digress, lol:)

There's a group on FB called neutropenia mom's which is AMAZING! It get's lot's of traffic so questions are answered quickly and by lots of (knowledgable) people. It's a closed group so only mom's of kids with neutro can see what you write. If you don't do facebook, it's worth creating an account just to join that group!

Tiffany - posted on 02/25/2014

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Thanks, I will check that out. I was just wondering the signs and symptoms of other children that have it. My son gets crazy infections and was always sick. Now he complains of a belly ache all the time and doesn't like to eat. He had been diagnosed with Failure to Thrive and Food adversion and placed on an NG tube. He has gained wait now and help up pretty well with having it removed, but still constantly complains of belly aches and hardly eats. Just wondering if any other parents have had similar issues with, or even without, their child having neutropenia.

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