Posts Tagged ‘sickle cell anemia’

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Right now, there aren’t any in Sarasota or Bradenton that has a sickle cell pain management clinic or program. However, if you live in Sarasota, I personally recommend going to Doctors Hospital or Lakewood Ranch. Because, the wait times at Sarasota Memorial are way too long. My daughter sat in the waiting room for 2 hours in pain at Sarasota Memorial. They were telling me it’s because she needed to see a doctor and not just rushed back to urgent care where there is no doctor.

We recently needed to go back to the ER, but I chose to visit Lakewood Ranch Medical Center. The wait time was less than 10 mins and everything that needed to be done for her was done in a timely manner and she wasn’t in any pain this time. The triage nurse wasn’t familiar with sickle cell, which I could tell by the questions he was asking. However, the nurse assigned to my daughter was familiar and the pediatric doctor was as well. We arrived at 1:00pm and left around 5:30pm. Blood was taken, results were received, the hematologist in St.Pete was called, IV inserted, fluids received and it all was done in 4 and a half hours. (UPDATE 07/03/2016) I found out in November of 2015 that Lakewood Medical Center no longer has a pediatrics department, so taking kids there for serious medical conditions may end up having you wait for hours for EMT to come transfer them to another hospital.

I’ve never been to Doctors Hospital for any sickle cell related issues. However,their wait time is usually less than 30 mins in the ER and on their website they have information regarding managing sickle cell. So,  I could only ASSUME that they have some knowledge about sickle cell. I would personally would chose it over Sarasota Memorial.

Sarasota Memorial is where my daughter received her first blood transfusion back in 2001. At that time I was an advocate for Sarasota Memorial. We never had to wait in the ER.. we were always taken to a room or pre-admitted if the doctor called before we arrived. Now, all of that is out the window due to changes of the hospitals structure. However, they are very knowledgeable about sickle cell, so if it  is something serious that needs more than a “quick fix” I would probably go there first. I say this now since I have never been to Doctors hospital for any sickle cell related issues.

Stay away from Manatee Memorial!!! The doctors there are horrible and condescending. He blamed my daughters insurance carrier as to why they couldn’t figure out how to treat her. We had to demand to be released to All Children’s. This was in 2001. That was the first and last time I ever been to that hospital.

Sickle cell enuresis or “bedwetting” means that the kidneys no longer concentrate (condense) urine like they should.

This results in:what causes pain in the sickle-cell person

• Larger amounts of urine
• Going to the bathroom often to empty the bladder
• Bedwetting, even when your child does not drink a lot before bedtime

What causes sickle cell enuresis?

When abnormal sickle cells get trapped inside the small blood vessels in the kidneys, they block blood flow and keep the kidneys from working as they should.

This can cause:

• Making more urine, this makes it easy to become dehydrated (losing too much water)
• Loss of salt and water balance in the body
• Increased thirst to make up for the water that is being
• lost in the urine
• Damage to the kidneys, which may get worse with time

Your child’s ability to control the extra urine at night depends on:

• Your child’s age and sex. It is more common in boys and in younger children.
• How deeply your child sleeps
• If bedwetting runs in your family

What symptoms could my child have?

Symptoms made include any of these:
• Urination (voiding) more of during the day and night
• Wetting the bed at night

If your child has a fever, burning or pain when he/she urinates, call the doctor right away to make sure your child does not have a bladder infection

How can I help my child?

• If your child has a problem with bed wetting, talk to your healthcare provider

• Your child is not doing it on purpose. Do not get mad or punish the child.

• Make sure your child drink plenty of fluids during the day so that your child can limit the fluid in-take before bed. Keep your child well-hydrated to avoid of kinds of sickle cell problems.

People with sickle cell go through all the stages of puberty like people without sickle cell. Usually, the age you start puberty is similar to others in your family. However, people with sickle cell often go through puberty at an older age.

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It can be tough not being as tall or as developed as other teenagers your age. Many people (not just people with sickle cell) go through puberty at an older age. You should not feel bad about yourself because your body is changing more slowly than others. It is normal to feel awkward about your body at times, but you should not constantly worry about it. If you are concerned about your pubertal development, talk to your doctor.

Spring 2014 Family Retreat Weekends/Summer 2014 Camp Sessions for Sickle Cell Carriers

Camp Boggy Creek is a permanent, year-round facility where children ages 7 through 16 with chronic or life-threatening illnesses and their families can come to Camp at no charge to them. Camp Boggy Creek provides a safe and exciting camp experience for children from throughout Florida

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Rayburn House Building
Room B-339/340
45 Independence Ave Southwest
Washington, DC 20515

Register Today!

 

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Not many people are familiar with this medicine as treatment for Sickle Cell.

Let me first explain the uses of the medicine:

Hydroxyurea is used to treat skin cancer (melanoma), a cancer of the white blood cells called chronic myelocytic leukemia (CML), and metastatic cancer (cancer that has spread) of the ovaries. This medicine may also be given together with radiation treatment for head and neck cancer (primary squamous cell cancer).

Hydroxyurea is also used in adult patients with sickle cell anemia to prevent painful episodes and reduce the need for blood transfusions. It works by making the red blood cells more flexible.

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Although, Hydroxyurea was first synthesized in 1869 in Germany and became FDA approved in 1967 for the treatment of neoplastic diseases. It wasn’t until February 1998, hydroxyurea received a new indication, for the treatment of sickle cell disease. It is approved for use in reducing the frequency of painful crises and the need for blood transfusions in adult patients with recurrent moderate-to-severe painful crises (generally at least three during the preceding 12 months).

The efficacy of Hydroxyurea in the treatment of sickle cell disease is generally attributed to its ability to boost the levels of fetal hemoglobin. This lowers the concentration of Hb S within a cell resulting in less polymerization of the abnormal hemoglobin. However, the mechanisms by which it increases Hb F are unclear.

I’ve asked many carriers about the effects they’ve noticed in themselves or their children who are carries and I received different answers…….below

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Sickle Cell Anemia: A Patient’s Journey

Posted: March 12, 2014 by sicklecellunite in Sickle Cell
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