Discussion Forums > Thalassemia Major

Help! My sister is in Pain

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sydneygirl:
hi again kimi,
Does your sister have thal intermedia? perhaps  andy or someone else may be able to shed some more light from your post.

Andy Battaglia:
Hi Kimi,

It does sound like HbS beta thal, which has symptoms very much like sickle cell disease. The sickling crises can be very painful and I have to agree with you that the painkiller approach has been far overdone in your sister's case. I do think that she needs to discuss this with her doctor and see if the doctor will agree to wean her off the painkillers. Blood exchange is sometimes used to dilute the amount of sickle cells in the blood, which lessens the severity of the crisis. I would also recommend that she try the wheatgrass extract from wheatgrassactive.com . It has shown some ability to reduce the severity and frequency of sickling crises in some patients. It can also help with energy levels and improve to the general health.

You mentioned she had gone to Duke medical center. I have heard good things about treatment there before. If this is not the doctor she has seen there, please have your sister contact her. I do believe that better care is available but a complete understanding of your sister's condition is necessary.


Laura M. De Castro, MD
Clinical Director Duke Adult
Comprehensive Sickle Cell Center
DUKE UNVERSITY MEDICAL CENTER
DUMC Box 3939
Durham, NC  27710
(919) 684-6464  Office
(919) 681-6174  Fax

kimi:
Hi Andy!

Actually, Dr. DeCastro was my sister's doctor. Though she is a wonderful doctor, she was actually the first to prescribe oxycotine and oxycodone to my sister. She started her on these hard meds because my sister's pain started to get worse and she became tolerant of the other pain meds. To her credit, Dr. DeCastro was the only doctor who continued to refute the "Sicle Cell Disease" treatment, but she also didn't understand why Chere' was in so much pain b/c Thals usually dont have that sort of pain. She was very thourogh and I believe she only wanted Chere' to take the meds for a short while. Chere' didn't like the meds and my family started to see how they were affecting her, so she move back home after collge and started going back to Greenville for treatment. But unfortunately they continued her on these meds and that's when they were OVER prescribed and things got out of hand.

I will tell her about the Wheatgrass extract. Is it a liquid? If you know of any other natural remedies, please let me know. The "pain disorder" that's associated with Chere's HbS Thal is quite confusing and I've never heard of another case like it, have you? If so please let me know so we can see what other individuals have done to treat their pain.

Thanks everyone.

kimi :hugfriend

POLLY:
I don't mean this in a rude way but maybe your sister has become an addict?  If so she needs to see someone to address this issue.

kimi:
Yes Polly that was rude.....

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