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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Lots of drinking, keep up with the daily medicine,healthy diet, listen to your child when they become ill, know how to feel for the spleen, if they go pale/jaundice treat immediately, keep up to date with appointments with the doctor. This is not a full list but one piece of advice my daughters consultant, said to us, was, ' you know your child the best' so get to know your child, their behaviour before, during and after a crisis, how are they if they play too hard, get too cold or hot. How do they respond to certain foods. Also one last thing, even though you can get consumed with your child's health needs, you must keep yourself healthy too. Yes easier said than done but once you get into a routine it gets a little easier. Get as much sleep as you can, eat well, drink plenty. Keep a bag packed ready for when you have to take your child to hospital, the quicker you get to the hospital the better, so be ready. It doesn't have to be a big bag, enough to keep for two nights. The one consistent thing should be to drink plenty. Also look after the psychological welfare, they will ask questions about why they are going through the pain, stay positive. Another piece of advice a Sickle Cell nurse said to us is, ' give them lots of love' it sounds obvious but it proved true in the end. I'm not sure how it will be for your child but I have taken my daughter to the beach and swimming - the key is to keep them warm and drink plenty, you have to see what will happen to your child. Ask your doctor what is best. Speak to your consultant who can guide you through this and point you in the right direction. Don't listen to myths! I hope this is helpful and all the best X
Awwe, thanks!! This helped. Definitely appreciated!!
I agree. Water is critical. When your baby is old enough to hold a water bottle, give her her own water bottle so she can drink freely to prevent dehydration. Watch for swelling in joints--wrists, ankles, etc. as this could indicate sickling. Healthy foods are also important. Try to avoid temperature extremes, especially cold, and be sure to dress her accordingly. Don't make her feel any different than other children. She will learn to listen to her body and will learn her physical limitations. My son was/is prone to pneumonia and I was able to read something in my son's eyes or in his breathing when he was not well. You too know your own child. Do not underestimate yourself. I found it quite helpful to have a pediatric hematologist but no matter what doctor you have, make sure they review everything with you and ask questions. Lastly, do not beat yourself up! God bless you both.

I am not a parent, I'm 19 years old and I live with sickle cell. Like everyone says, water is key. I try drink a liter of water everyday and most of the time, I do. I'm a water baby, I absolutely loved and still love the water and the beach. I used to get sick and have mini crisis the next day after swimming. The key is don't let your child get too cold. I would never want to get out no matter how cold I got, and I paid for it the next day. My mother could always tell when I was getting sick, so I know a mother has the best intuition. :) My eyes always give it away. She knew that I was getting ill before my body told me that I wasn't feeling well. The whites yellow and if you look at the inside of your eyelid, it should be a redder color but when I get sick its more of a pink. I take folic acid every day to help with the production of red blood cells and I had to take penicillin for the first four years of my life. This does weaken the nature of your teeth so I also have to take fluoride medication. I know I'm not a parent but I really hope that this helps. 

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.

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.

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


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