Living with Sickle Cell Disease
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Venting and advice

Hello, I am here on behalf of my daughter, who was diagnosed with sickle beta thal plus. She is eight years old. She was diagnosed in utero.

She has been hospitalized three times with lung infections...the doctors would never really pinpoint an actual ailment. And, This past summer for mononucleosis. She constantly complains about stomach pains, but the doctors are unsure of the cause. She does also have pains in her legs and hips frequently, but has had one actual "pain crisis".

I guess my frustration lies with being told that her actual disease is a milder version of sickle cell and she shouldn't suffer much, but since she has been able to speak she has mentioned pain. A lot of the times I feel like her hemoc team just blows us off, until she actually ends up hospitalized, then, they are the team in charge. I know I'm not crazy and neither is my baby, but I am becoming frustrated with a clear direction or path that clearly states sickle cell issue or not. This is mostly an introduction and a vent. Thank you for your time.

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Hi Kluckycharmz3 I'm sorry to hear about what you and your baby are going through. It can be difficult finding good doctors who are patient and don't just try to get rid of you. I don't know how easy it is to change health care professionals where you are. See if you can find better doctors. It looks like you are already doing a good job you just need to keep hounding them. It's unfair for your daughter to be left in pain. They can't just decide she is not in pain if she says she is in pain. It's cruel. Good luck. I hope you get this sorted asap.

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