Archive for the ‘Children’ Category

Sickle Cell Support Group

Posted: April 11, 2015 by sicklecellunite in Children, Events, Sickle Cell, Support Group
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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.

This is done and all the promoting for it is over. However, I just want to celebrate that we met the signature goal and then some. I didn’t post here because I was so busy posting on other social networks and this one slipped my mind. However, I say keep signing and sharing anyway, let them know sickle cell is important!!

https://petitions.whitehouse.gov/petition/declare-sickle-cell-disease-national-health-priority-and-support-legislation-expand-and-establish/jFgQrMJ7

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.

Learn more tonight at 6:30pm At the 941 Sickle Cell Unite Support Group Meeting

Unite with us tonight at the North Sarasota Library – Meeting Room 2

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.

What parts of the body does Sickle Cell affect?

Posted: April 17, 2014 by sicklecellunite in Children, Sickle Cell

Blood travels all over the body, so Sickle Cell can affect many parts of the body:

  • Brain: A stroke occurs when blood flow to the brain is blocked.

As a child you should have had a test called a Transcranial Doppler (TCD) that measures the flow of blood to the brain. This test helps predict a person’s risk of having a stroke.

  • Eyes:Jaundice is a word used to describe the yellow color most easily seen in the normally white part of the eyes (sclera)

People with sickle cell have jaundice because of the breakdown of red blood cells that releases bilirubin, a yellow substance. Many people with sickle cell always have some mild jaundice because their red bloods cells are broken down much more often than people who do not have sickle cell. This jaundice is not concerning. Also, People with sickle cell should see an ophthalmologist to look for retinopathy every year starting at around age 10.

  • Lungs: Acute chest syndrome (ACS) is a term used to describe a type of sickle cell crisis involving the lungs. Some doctors may use the word “pneumonia” – In general, pneumonia in a person with sickle cell disease is the same thing as acute chest syndrome.
  • Heart: Pulmonary hypertension is increased pressure in the blood vessels that go to the lung for oxygen transport. This increased pressure is caused by narrowing of these blood vessels.
    Pulmonary hypertension is a problem because it can cause a strain on the heart that has to pump blood.
  • Spleen: Splenic sequestration is the sudden enlargement of the spleen due to trapping of red blood cells. This pooling of blood in the spleen causes problems because fewer red blood cells are able to circulate throughout the rest of the body to transport oxygen. People with splenic sequestration need to be hospitalized and may need a blood transfusion.

Functional asplenia – The spleen in individuals with sickle cell disease usually becomes damaged over time by the many abnormal red blood cells traveling through it. Usually by adolescence, the spleen in individuals with sickle cell disease is non-functional because of this damage. Functional asplenia simply means not having a working spleen.

  • Gallbladder: Gallstones. People with sickle cell disease typically can develop types of gallstones called bilirubin gallstones. Bilirubin is a yellow substance made when hemoglobin in red blood cells is broken down. People with sickle cell disease have elevated bilirubin levels because of the constant break down of damaged red blood cells. This bilirubin can then collect to form gallstones. A few gallstones may not cause any problems.

If a person is having significant problems from gallstones, the treatment is surgery to remove the gallbladder (cholecystectomy).

Sickle Cell can also affect the kidney, bone, bone marrow, and the BLOOD itself due to having iron overload from frequent blood transfusions.

My Friend Has Sickle Cell Disease. How Can I Help?

Posted: March 28, 2014 by sicklecellunite in Children, Sickle Cell

My Friend Has Sickle Cell Disease. How Can I Help?.

 

Most teens with sickle cell disease have to pay extra attention to diet, take vitamins (especially folic acid), exercise, get enough rest, and stay hydrated by drinking enough water. They need to watch how their bodies respond to infections like a cold. Some people take antibiotics to help fight off bacteria.

People with sickle cell disease may have to limit some activities, especially certain sports. They need to avoid extreme temperatures, like severe cold, which can bring on a pain crisis.

Teen with sickle cell to be named honorary Bulls’ captain – Chicago News and Weather | FOX 32 News.

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My daughter a Sickle Cell SS type Warrior…. turned/made 13 on Monday! She is doing so well. She hasn’t had a blood transfusion 3 years, no hospital stays in 2 years… she had a pain crisis recently, but it didn’t last long, she just started taking Hydroxyurea recently in hopes to boost to her energy. She is into photography and TV/film editing. She excels in school and has been nominated for the principals award!!!!!

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