@ethanclement
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Ethan Clement replied to the topic Have you been vaccinated? If so, how was your experience? in the forum Coronavirus (COVID-19) and Sickle-Cell Anemia 1 month ago
Our son (has type SS) was vaccinated –two doses of pfizer vaccine here in the USA.
No problem with first dose, but second dose proved different. He had pain and fevers and then was hospitalized for 11 days. He was doing OK on IV fluids for 3 1/2 days but then started having problems breathing. Acute Chest Syndrome set in severely. He was on…[Read more]
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Ethan Clement posted a new activity comment 2 months, 2 weeks ago
I don’t think that has been discussed yet. Routine blood transfusions were started before covid but had to be put on hold because of increased risk. We haven’t resumed routine transfusions and he has been on a new medication Oxbryta which also may be helping his overall well-being.
Ethan -
Ethan Clement posted a new activity comment 2 months, 2 weeks ago
Thank you for your input. He does like fresh spinach salad but not cooked spinach! It’s a learning experience. The right amount of physical activity/recreation is good. Too much is clearly bad but not entirely predictable especially as he Loves sports! Thankfully the warmer weather is arriving which also factors in. He is a blessing as… -
Ethan Clement replied to the topic When did you discover proper nutrition helps you manage crisis better? in the forum Sickle Cell Disease Awareness 6 months ago
OK, thanks. My wife and I are trying to help our teenage son battle Sickle Cell. Teenagers are teenagers and don’t always eat and drink healthy things!
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Ethan Clement posted an update 6 months, 1 week ago
Do you have a list of foods which you have found to be beneficial to reducing/preventing crisis? Thanks Ethan
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Ethan Clement replied to the topic When did you discover proper nutrition helps you manage crisis better? in the forum Sickle Cell Disease Awareness 6 months, 3 weeks ago
Do you have a list of foods which you have found to be beneficial to reducing/preventing crisis? Thanks Ethan
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Ethan Clement replied to the topic We're Back!!! in the forum Using our forums 1 year ago
Yes, Welcome back. My son was luckily able to be in reverse isolation for the last 3 months along with my daughter, my wife and myself. Seems to have been a big help to keep away from all the other bugs running around and of course SARS-CoV2!!!! The kids did a lot of arts and crafts and given our rural location got out into the woods and…[Read more]
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Ethan Clement posted a new activity comment 1 year, 3 months ago
Tito,I responded briefly earlier. What I’m very interested in is improving the quality of life for people with sickle cell disease. There are new drugs coming out on the market here in the USA, which are promising, but very expensive and without insurance would be impossible to purchase. Our son’s doctor has had trouble getting…
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Ethan,
I believe food high in protein is favorable, like beans and vegetables from the soil like potatoes, sweet potatoes, turnips and leafy green vegetables. Look up diets in Africa. SCD is not a “problem” their and their diet is different from the USA. Staying hydrated and relaxation are wonderful choices. Teenagers probably enjoy downtime…-
Thank you for your input. He does like fresh spinach salad but not cooked spinach! It’s a learning experience. The right amount of physical activity/recreation is good. Too much is clearly bad but not entirely predictable especially as he Loves sports! Thankfully the warmer weather is arriving which also factors in. He is a blessing as…
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Ethan Clement posted an update 1 year, 4 months ago
Continuing dealing with Son’s pain crisis.
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Ethan Clement became a registered member 1 year, 4 months ago
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Hi Ethan,
I hope you’re well.
I wanted to reach out and introduce myself. My name is Tito, I am one of the forum moderators of the site.
I see from your profile that your child has sickle cell, please let me know how our forums can help you.Looking forward to talking to you soon!
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Tito,
I responded briefly earlier. What I’m very interested in is improving the quality of life for people with sickle cell disease. There are new drugs coming out on the market here in the USA, which are promising, but very expensive and without insurance would be impossible to purchase. Our son’s doctor has had trouble getting…
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Ethan,
I believe food high in protein is favorable, like beans and vegetables from the soil like potatoes, sweet potatoes, turnips and leafy green vegetables. Look up diets in Africa. SCD is not a “problem” their and their diet is different from the USA. Staying hydrated and relaxation are wonderful choices. Teenagers probably enjoy downtime…-
Thank you for your input. He does like fresh spinach salad but not cooked spinach! It’s a learning experience. The right amount of physical activity/recreation is good. Too much is clearly bad but not entirely predictable especially as he Loves sports! Thankfully the warmer weather is arriving which also factors in. He is a blessing as…
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Ethan,
Has your teenager’s hematologist discussed Apheresis with you and your wife regarding SCD? If not, ask about this… Hope the warmer weather brings relief.-
I don’t think that has been discussed yet. Routine blood transfusions were started before covid but had to be put on hold because of increased risk. We haven’t resumed routine transfusions and he has been on a new medication Oxbryta which also may be helping his overall well-being.
Ethan-
Ethan,
I understand. Some physicians are not familiar or do not have the facility capabilities for this option. I would be curious about the information that the physician shares with you when you ask and the rationale for their position. There are more options now for young people than earlier when I was growing up.
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I understand. Some physicians are not familiar or do not have the facility capabilities for this option. I would be curious about the information that the physician shares with you when you ask and the rationale for their position. There are more options now for young people than earlier when I was growing up.