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Signs of Sickle Cell Pain in Babies

babyA new mother sent us this question. “My baby has sickle cell. How can I tell if she is having pain or if a crisis is about to set in? She gets really upset and cries sometimes, and I’m instantly worried but have no way of knowing.”

Over 75 responses later, sickle cell warriors (parents and patients alike) gave her tons of advice. Read the thread on the Facebook page HERE. I’m writing this article in the hopes that another parent will find the answers useful.

Most of the babies will exhibit more than 1 sign below. Each element assessed by itself may not always mean a pain crisis, but several of the signs going on at the same time is a good message to you that some pain is affecting your precious baby.

Signs of a Sickle Cell Pain and Crisis in Babies

  1. Continuous and Persistent Crying: Crying can be indicative. Once you eliminated all the other possibilities of the crying (diaper, feed, sleep, comfort), and nothing seems to work, your child may be having sickle cell pain.
  2. Swelling: Hands, feet, and limbs may seem bigger than usual or swollen and puffy.
  3. Jaundice: Yellowing of the skin and eyes. You should monitor your baby’s eyes daily. The sclera (the white part) may be yellow. The deeper the yellow, the more likely a crisis. Some eyes may not be yellow, but just a ‘change’ in the eyes.
  4. Warmth: The affected extremity may be warmer than the other one. For example, the foot, leg, or thigh may have a warmer temperature than the other one that has no pain. Also may occur in knees, arms, pelvis or any joint.
  5. Fever: This often the last sign for crisis or pain. A fever greater than 101 degrees F is a solid indicator. A fever means your baby may have an infection, which does lead to pain/crisis. Most crisis also have a fever component attached in almost all babies.
  6. Withdrawal and Sensitivity to Touch: If you baby reaches for you, but then pushes you away or doesn’t want to held, or touched, she/he probably is having some sort of pain. They want your comfort, but you holding them may be causing more pain. So if you notice this mixed message, they probably have pain.
  7. Mood: Really irritable
  8. Lack of Appetite: If your baby is not eating or drinking milk as she usually does, then this can be another sign. This can lead to dehydration which can lead to a pain crisis.
  9. Lack of sleep: If you are on a regular sleep schedule and your baby cries all night long, and does not sleep
  10. Movement: The baby does not want to move, and if they move, they will cry. If a toddler, you may notice limping.
  11. Color: If she has paleness or lighter coloring especially in the palms of hands and feet, inside of mouth…Also may have black or blue areas on lips, toes, fingers or skin. This is from diminished oxygen to tissues because of low blood count
  12. Lethargic or Limp: Just not moving, walking, or acting as usual.
  13. Intuition: Over time you will develop the intuition that will just kick in and tell you. My mom would just look at me and ‘know’ that I was in pain. It is your mothering instinct taking over. If your gut is telling you something is wrong with your baby…then take her to get checked out by a doctor.

 

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About Author

Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin’s message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

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11 Comments

  1. joankesi
    joankesi May 28, 16:06

    its been inspiring since i stumbled on this site…been reading one article to another..its amazing how strong we really are…we’r indeed warriors.My name is joan and am 24 and this may seem impossible to believe but i actually found out about my disease last year when i was 23,,yea u got it right..i lived my life suffering unimaginable pain without a diagnoses..i never took all the daily drugs nor any precaution,,everyone around me could see something serious was wrong with me health wise but each time i sort medical help or tested for my genotype it reveals either AA or AS..yet i showed symtoms of a one with sickle cell disease..i just lived day after day hoping i dont die in my sleep…it was only till last year when i took seriously ill that i decided to face my fears and seeks qualified medical help..it was then i got a clear insight as to what am suffering from….i am without any doubt a product of God’s grace to have lived despite my ignorance…thanks a lot for this site and the information there in…God bless and continue to preserve us all….

  2. Sickle Cell Warrior
    Sickle Cell Warrior Author June 24, 14:56

    Thanks Joankesi. So glad you finally know what is going on. Some people with the trait also have sickle cell symptoms, just not to the same severity. Also, you may have a different variant of sickle cell (like thallasemia, SF, SE…there are so many other types) I wish you blessings and strength on this journey. Never give up!

  3. Frank lonewolf
    Frank lonewolf January 17, 16:08

    Been dealing sickle cell attacks ever since I was sixteen. Years old. Just having to deal with most frequent attacks since hit 32 year old and more of an onslaught since I hitvmy mid 40’s I’m willing to try whatever I need to rid myself of this sickle cell once and for all thank you frank you can call me or text me anytime. Thanks
    Frank D. Bright aka lonewolf

  4. Maureen
    Maureen May 14, 14:20

    I feel so heartbroken because I think my 2yrs old baby has the sickle cell disease. First time we did her genotype test, result said she was AA. Second and third tests said SS. She sometimes has the yellow eyes and pale symptoms and sometimes complains of chest and stomach pains. Please what do I do?

  5. Sickle Cell Warrior
    Sickle Cell Warrior Author June 13, 01:29

    @Maureen, you need to find a pediatric hematologist. Try the University hospital in your city. Or the local Children’s Hospital. Getting a pediatric hematologist to manage your baby girl is her best chance. YOu can ask them all the questions and get help on anything about her health.

  6. Sali
    Sali October 14, 02:48

    Thank you for the article. A month ago I found out that my daughter has sickle cell disease(HB S/D type). She is 5 months old and she came after a gap of 10+ years.my older son will turn 11 in 2 months. It’s very difficult to tell if she has pain but I will keep in mind the points you have mentioned, I am sickle cell carrier and it hurts me every time I think of the severity of the pain that she is feeling. I hope she grows up to have a fulfilling life.

  7. shiveli
    shiveli October 20, 23:55

    My 3yrs boy with sickle cell, involuntally movement of lips with saliva secretions,right limbs gets weak,hb always around 6gl/dl,

  8. shiveli
    shiveli October 21, 00:00

    Does trevo suppliments helps in sickle cell anaemia?

  9. Glory
    Glory October 22, 11:22

    Pls can u highlight me more on the SF.

  10. Uc
    Uc November 18, 02:33

    My daughter is 2yrs Old and diagnosed with ss since last year. Started her on palaudrine around may this year. But since last night she has been in pains since lastnight. I have administered ibrufen,paracetamol like her doctor prescribed. Plz what else do i do?

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