Baby with sickle cell : My baby is... - Sickle Cell Society

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Baby with sickle cell

Coucouvg3 profile image

My baby is currently 2 months and was diagnosed with scd ss. The doctor told me that she will still live a normal healthy life but would just require more medical attention. I want to know how early does pain episodes start and what are signs to look for? She is currently on antibiotics.

9 Replies

My daughter has ss and takes penicillin, folic acid and vitamins everyday she has had no episodes of crisis pain yet & she is 3years 4months - each child is different my daughter still has 30%fetal hemergoblin which is making her condition milder then others pain can start anytime after 6months.

she does get every cough cold & viral infection going & need to drink 1-2L a day. Biggest warning sign is a temperature 🤒 38•c is our warning for a&e x hope this helps

Pie14 is absolutely right. My friends daughter was born with it and her mum gives her penicillin,folic acid and multivitamin everyday. She hardly gets sick and has the normal cold and fever. If you live in cold regions, make sure she gets flu jab every winter. Water is the best to prevent crisis. If she is bottle fed, I would give her water and keep her hydrated. I hope this helps 😊🙏🏼❤️❤️

I have SS and I didn't have any crisis at all until I was about 11. I spent a couple of weeks off school and then was fine again until I was 19! I'm 35 now. As the others have said, keep hydrated, go to your appointments and avoid triggers like exposure to cold weather, stress, dehydration etc. The severity of the condition can really vary, i'm lucky in that i've been able to live a pretty normal life, others have a few more issues as they grow. In terms of what to look out for, lethargy and fatigue. If she starts to have much lower energy levels that would be a sign that her haemoglobin has dropped and I would then advise getting it checked out. All the best x

sicklecellnews profile image
sicklecellnews in reply to lumo

Care for an interview with SICKLE CELL NEWS? Am impressed that at close to 40, you haven't had any crises to speak of.

lumo profile image
lumo in reply to sicklecellnews

Hi, I'm happy to answer any questions you might have, just send me a private message.

However, to correct you, I have had crisis, and have been hospitalised a few times. Just less than many others, and the problems didn't start until I was 11. I'm just lucky that my type of sickle cell doesn't make a huge difference to my standard of living many others are not so lucky.

My granddaughter started at 4 months and is now 3 years. Fever and pain are signs, don't wait, take her in to get checked. Follow "Sleevesupformyah" and it might help you to watch for signs.

It depends on what type of sickle cell she has. That is what determines if she lives a normal life or not. I have the severe type of sickle cell and I will not call that a normal life in any way. I hope hers is not to bad. Keep her hydrated, avoid extreme temperatures, and always get her to a doctor in time. We don't ride out infections like everyone else. Be vigilant and get as much information as you can.

Hi, my daughter is 11 months with blood type SC. She takes penicillin and folic acid daily and lives a normal life. I am very vigilant with her though as through the winter i basically hibernated with her only taking her out if necessary, keeping her warm and always well hydrated and rested. She's had all the normal colds, teething and even a viral infection that was a bit scary but Thankfully by the grace of God she hasnt had a crisis and i pray she doesnt anytime soon. Like yourself i found forums like this and theyre very helpful and informative. They say a crisis can occur any time from 4-6 months when their fetal blood starts to change. I hope this helps, please feel free to msg me for any advice or even just to talk to another parent of a baby with Sickle Cell, all the best.xx

Hi, I am 42 yrs old with sickle cell (hbss) I have led a normal life with the expectation of a few crisis there and there but I managed, having a team of doctors that can understand you, guess this where I am lucky - I work full time and as a solo parent juggle a child of 9 yrs who also happens have sickle cell disease with a high hb factor ( thank God). I have suffered mid Trans attack known as a a very stroke twice - I depend on having exchange transfusion every six via a machine- my work place understand this.

I have made life enjoyable and happy - I did miss a bit of school there and there but I advanced to uni and graduated.

My parents told my sickle pains began when I started to crawl, in the seventy diagnoses was not prevelant at birth until till later.

To answer your question, don’t stress over your child let her be herself but encourage and educate on the effect of sickle cell , water is her best friend , also with kids of sickle cell they tend to wet bed a lot until late teens - do not berate her but encourage her to use the toilet often, the reason the bed wetting attributes to the factor of tiredness and not able to get up when they are sleeping 💤 . Eat healthy and slight excerise like swimming and a lot of rest

Hope this help

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