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Do's & don't, things you learned the hard way...

by Donicka Rolle

Sep 19, 2014

I'm looking for some insite on things I should know raising my baby with SCD-SS. I have never dealt wuth anything like this. I only know what I've read. Which doesnt tell you much of how to help keep them healthy. There are a few myths..

No swimming pools or beaches?? Is this true or false?

Just curious if anyone has experienced and learned things that can help me to keep my child healthier?

I hope someone understands my question. I feel I may not be wording it properly?
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    Fenny Williams

    I don't have a child with sickle cell but I have sickle cell. Like everyone said water is key, another is to know your child's limits. It took a lot of trial and error on my part before I learned what my limits were. I know how long I can run, swim or cycle before I get sick. Having sickle cell doesn't mean your life can't be like everyone else's.


    One thing I will say is never make your child feel different. My parents wrapped me in cotton wool too much (it was their way of keeping me safe I understand) but I grew up feeling different being held back from joining my sibling in play in fear of getting sick. Let he/she be a child.

    Sep 22, 2014

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      lilian mbori

      as a mom whose learned the ropes ,yes you need water like oxygen. a balanced diet especially protective foods to build immunity, mine takes an orange daily. they shouldn't strain and they need to rest . keep them warm, my girl must always be warmly dressed. have painkillers stocked at home in case of a painful crisis relax as time goes by you will be the expert when it comes to your baby.

      Sep 23, 2014

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        Imani Pittman

        I have Ssd ss and its not the water it's the temperature. Under no circumstances can your child get cold, our go from extreme hot to cold. For example they cannot go from the hot tub to the cold pool. Always make sure they have enough water which is 2x the 8 glasses you should have daily

        Sep 23, 2014