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Pneumonia And Those With Hs (mom Looking For Answers)

Hello, I am the mom of a 4 year old that has spherosytosis. Although both my husband and I were tested, it appears neither of us have it. My son was diagnosed at 2 years old. Since then my son has had 6 bouts of pneumonia, most recently double pneumonia, positive RSV test which required a blood transfusion (his first) and landed him in the hospital for 6 days.His hemoglobuin is now 10. I was beside myself because I was under the impression from our hematologist that I needed to really watch out for the parovirus. So this one threw me for a loop. He just had trouble breathing, high fever, but NO runny nose. Every time he gets sick it goes straight to his lungs and comes on like a freight train? Does anyone else have this problem? Hematologist says that is not usually from spherocytosis so he has also seen an immunologist, pulminologist, everyone with no answers. Im just trying to see if this is the norm for this disease. Who better to ask than others with it.

Also since this was his first transfusion, it scares me. Is this perhaps the norm when he gets a virus? how can I protect him? He is 4 and I have kept him away from our friends, his play groups, he doesnt go to school, public to avoid him getting sick. I dont know what else to do. I am SO SO afraid to send him to school as he got SO sick SO fast. What other viruses do I need to be on the look out for? any alternative meds or vitamins helping anyone? As you can tell I am DESPERATE for answers as I was under the impression it wasnt life threatening. Boy was I wrong, PS yesterday will be 1 week since his transfusion and his body is running cold (97.5) to the touch. VERY unlike him. Both Ped and Hematologist said it was fine, but should I be concerned? Ive cranked the heater up to 80 degress even.
mojruza mojruza 36-40 2 Responses Feb 24, 2012

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Hi hope your s on is well as it was a year since your post, my granddaughter has hs and had parvovirus which is life threatening to people with hs, they kept transfusing her through the night as soon as the blood was given the virus was killing it off so took quite a few bags I remember her having oxygen mask on her face its frightening and they had to keep pumping more blood into her until the virus had gone ,out of her system, but kids can pick infection up anywhere even at home bless him

I have HS and I've been below normal body temps all my life. My blood pressure is even that of a toddler (100/70ish). Your son will likely get sick yearly, either terrible chest cold or ear infection/sore throat. Just make sure you catch it early and take him to the doctor. You are in for a roller coaster ride but start doing your research now and make sure you are up on new medicine and healthy living research related to this disorder. I've also recently seen some info warning HS people to avoid excessive exercise and don't be alarmed if he sleeps a lot and is lethargic as that seems to be a common side effect of HS.