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Amber
@onlysky

Posts: 1
Joined: May 22, 2015

Hi! I have two children, Atom (age 5) and Trillian (age 3) [...]

Posted by @onlysky, May 26, 2015

Hi! I have two children, Atom (age 5) and Trillian (age 3) who both have Hereditary Sphereocytosis. We hadn’t encountered any problems since they were newborns, until this May, when we had our first hemolytic crisis experience after they both caught parvovirus and became anemic. After several transfusions for each of them, I think we’re finally through this and hopefully they won’t have any more problems for a while!

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Arnold Palmer Hospital
@ArnoldPalmerMod

Posts: 310
Joined: May 22, 2014
Posted by @ArnoldPalmerMod, May 27, 2015

Hi @onlysky – Thank you for sharing your story with us! We hope you find the support you are looking for as part of this group. Both of your children sound like true fighters in the midst of challenges and we hope they are healthy and thriving today. We look forward to connecting with you further!


Xandra
@Xandra

Posts: 2
Joined: Oct 14, 2015
Posted by @Xandra, Oct 14, 2015

Hi, i also have a daughter with spherocytosis. She just turned 6 this past August. I was curious how your little ones are doing now?


MichellesJoy
@michellesjoy

Posts: 13
Joined: May 31, 2010
Posted by @michellesjoy, Jan 13, 2016

@onlysky @Xandra – I hope your young ones are doing well now? 🙂


Amber
@onlysky

Posts: 1
Joined: May 22, 2015
Posted by @onlysky, Jan 13, 2016

They’re doing well! My oldest, Atom, had another scare later in 2015 where he became anemic after just another random cold. He got through it without needing a transfusion that time, but after having 2 episodes of hemolytic anemia within a year, and with his spleen being enlarged and us being worried about his growth possibly being affected by the spherocytosis (he’s quite small for his age), that was enough for our hematologist to give the go-ahead for doing the splenectomy if we wanted to. We had that done at the very end of Dec, and he’s doing great! They did it laparoscopically and we only spent 24 hours in the hospital and he was back normal activity within a week. It’s a huge relief not to have to worry about anemia anymore. The only downside to the splenectomy is that now they want him to be on a low dose of antibiotics for the rest of his childhood (until age 18!) because of the somewhat increased risk of infections from certain bacteria. I’m still not sure about that recommendation… This is not something I ever had to do during my childhood, after my splenectomy. How is your daughter doing Xandra? Has she had any complications from the spherocytosis? Atom turned 6 in July as well!


Xandra
@Xandra

Posts: 2
Joined: Oct 14, 2015
Posted by @Xandra, Jan 15, 2016

So happy to hear all went well with the splenectomy and he is doing well. We havent had any recent scares. I also had the recomendation to do penicillin after my splenectomy but my parents opted out so i didnt do it. Gemma still has her spleen and im hoping she can keep her spleen for awhile longer. Are you local in Orlando? Would love to keep in contact.

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