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Don’t Be Bullied!

Sick Child and mom

As parents of warriors, we must always be alert when managing our babies’ Sickle Cell disease.  Recently, I had another eye-opening experience while dealing with doctors after my warrior temporarily lost her vision twice.  The doctors immediately admitted her and gave her a blood transfusion.  Next, they ran all kinds of tests and did a total of three MRIs.  In conclusion, they could not figure out why she had vision loss twice within the past four weeks.  In the first instance, my daughter had head pain but the second time she only had eye pain.  Their best guess was that it was a migraine that caused the vision loss both times and prescribed Nortripyline.  Now, without question, I trusted that these doctors would not prescribe my baby anything that would hurt her.

We started her on the Nortripyline for a week after the first vision loss episode.  By the third day, she began to vomit, and lose her appetite every day.  I called her doctors and discontinued giving it to her.  By the time the second vision loss episode occurred the doctors were sure it was because I stopped the giving her the Nortripytline. However, when on this drug longer for the second week, my daughter loss her ability to urinate, had loss of appetite again, and had chest pains each night.  This whole time, I hadn’t realized no one told me the side effects.  So I decided to look up the side effects and my heart just sank.  The drug is mainly prescribed for depression and has a list of side effects that were scary to say the least.  My little warrior was experiencing at least of five of these side effects.  She would tell me she felt sad along with the side effects she had that I mentioned earlier.  I was irate not only at the doctors but also at myself.  They basically guessed and was wrong.  I remember even asking the doctors if they could distinguish the Sickle Cell pain from a migraine and one of the doctors told me no.

During her followup I explained the side effects and why I discontinued the drug again.  Their next solution was to change the drug to something else.  But this time instead of trusting them at their word, I looked up the side effects as soon as I got home.  The side effects were the same as the first drug plus more.  I never gave her this new drug nor did I call them but decided to wait until her followup appointment.  With prayer as my guide, I looked at studied her diet and realized she was not drinking enough water nor taking her vitamins and Folic Acid consistently.  So I increased her water to 4 one liter bottles a day. She was told to drink at least 2 at school and 2 before bed.  Her crisis have went from 7 days a week to maybe 2 per week that do not last more than an hour.  When she has crisis now we pray on them and within a hour they are gone.  My children also will assist in helping me pray for her.  And my warrior herself has requested we pray and doesn’t want medicine.  At this very moment we have a full bottle of Motrin that has not been opened, she has not missed school for SC and overall health has improved.

Parents don’t be afraid to look up these any drugs they offer your warrior before you give them to your child.  Do not let doctors gang up on you and dismiss your knowledge of Sickle Cell or your knowledge about your child specifically. My warrior’s body reacts differently than others.  What others can take and experience no side effects; my daughter experiences them right away.  Doctors will tell you that until the drug is in your body for 30 days that you should not see any side effects. That also is incorrect.  The main argument was “what caused the vision loss?”  The hematologist could not believe it was SC because they said she should have had a stroke.  The eye doctor said it was surely the SC because any other cause would have made her blind.  The neurologist said it had to be a migraine because and not SC because again she should have had a stroke.  I looked at both of them during the follow up and said I believe my baby did not stroke because God did not allow it and it was a miracle.  They all just starred at me.  She continues to have blood transfusions but they have to keep decreasing the blood given because her blood count is up.  So I know she will soon be off of transfusions as well.

As a parent, you know your child’s body just as well as your child.  As parents, we are there 24/7 caring for them and keeping track of what is happening with their Sickle Cell.  It is a great idea to keep a pain journal especially if your warrior is sick often.  The best pain journal would be a planner with enough space to write down your child’s pain.  Things to record in this pain journal would be time of crisis, where the pain is, how long the pain lasted, what remedy if any you used like medicine given, if went to ER, if hospitalized and for how long.  And upon discharge; what was the cause of the pain if known along with instructions.  I like to abbreviate a lot of what I write in my daughter’s pain journal.  I would suggest writing in your own code to save space to add all details needed. For those of you that love your phone, you can also try the free, private VOICE Crisis Alert app for sickle cell disease. Download from any app store.

Doctors are a great help in managing SC but do not know everything.  This is not any easy journey at all but there are things we learn along the way that shows us the best experts in dealing with our warriors is us, the parents.

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About Author

Elle Jenae

Elle Jenae

My name is Louisetta Williams and I’m a proud single parent of a 4 beautiful girls ages 18, 13, 8, and 5. I love to refer to my daughters as my Z-babies because all their names start with a “Z” and online I often call them Z1, Z2, Z3 or Z4 in accordance of their birth order. My youngest Z-baby is 5 years old and she is my Sickle Cell Warrior.
I work as a research assistant at the American Academy of Pediatrics where we research diseases that affect children all over the world. I love my job because our research helps enhance children’s health worldwide. My passions outside of work are reading, doing family activities, going to church, writing and helping people in any way I can.
I wanted to write for Sickle Cell Warriors because I want to be the voice for parents who fight for their Sickle Cell Warriors daily. I believe by sharing my experiences, research and testimonies of how I cope with dealing with an ill child; I can help someone. I want to be an advocate for SCD parents who sacrifice so much and let them know that it’s okay to be perfectly imperfect.

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8 Comments

  1. MONEY
    MONEY April 19, 07:06

    I went through the same thing as a child, my mom had it journal former as well. I’m am 37yrs old now. I been thru a lot dealing with my SICKLE CELL. Now I can honestly say that I know what helps and don’t help. I get up every morning take my NUTRA BURST, and Chaga, my NRG pill. It has helped me out alot. Where I don’t have to take the medication that the doctor prescribed for me anymore. Please reach out to me if you can… Contact me on phone or email at moneywear@outlook.com. (678)365-8796. Ask for Mookie. I would love to help all of my warriors sisters and brothers. This is a Total Life Change that you will see. I promise. http://www.totallifechanges.com/5804871

  2. Tay
    Tay April 20, 13:03

    .

  3. Angel Cilly Cell
    Angel Cilly Cell April 22, 12:30

    Awesome awesome awesome I LOVE IT! PLEASE SHARE IN MY TILLO & CILLY CELL PROJECT GROUPS! KEEP UP THE GREAT WORK! !!

  4. Stacey
    Stacey April 23, 09:04

    Hi I’m a 44 yr old warrior with two kids (17 & 8). After giving birth to oldest son, where I developed a severe case of pre-eclampsia and temporarily loss my vision. The doctors said it as due to the pre-eclampsia however, I know another warrior who is permanantly blind due to issues with his retina. It is known that some folks with SCD experience vision trouble, including vision loss. Did your daughter have an elevated blood pressure at the time? Also people with sickle cell trait have vision problems. It was once said that ppl with the trait don’t suffer the symptoms as those with the disease. That is another untruth. My sister has the trait and she had several eye operations and had a detached retina. All symptoms from having sickle cell trait. People who have the trait can also have pains & body aches, and fatigue. Thanks for being a strong mom. The side effects from the meds we are given can be horrendous. It’s a catch 22 in some cases because you need it to make you better but it can make you worse in other areas. Continue to be strong. I pray your daughter stays well. God bless!

  5. Elle Jenae
    Elle Jenae Author April 26, 14:26

    Thank you so much for your response! Doctors can be helpful and at the same time feel like if they haven’t seen something happen then it isn’t possible. Everyone’s body is different. To this day doctors swear my daughter could not have experienced side affects right away from Hydroyrhea bc it takes up to 90 days to happen. Although it happened within one week and they saw the evidence. The science of medication is not absolute and never has been and never will be. Thanks again, for your response. It blessed me tremendously.

  6. Elle Jenae
    Elle Jenae Author April 26, 14:27

    Feel free to share it, sis. You can share it from the article page along the side. Baby girl has been sick some so I don’t want to forget to do it.Thansk for your response! I loved it!

  7. Elle Jenae
    Elle Jenae Author April 26, 14:29

    Thanks for your response! I will try to contact you by email this week and maybe do an articles of the benefits of your regimen. Thanks again for your response & support!

  8. Shakeira
    Shakeira August 04, 03:46

    Thank you so much for sharing your story! Both of my children have Sickle Cell SS they are 2 and 1 years old and I noticed right away that we wouldn’t be following everything the doctors said. I give them vitamins and supplements and we have a strict diet and my babies are doing really well. Thank you again for sharing your story!! If you’d like to hear more about mine I just recently started a website sharing our story. Much love and God bless!! http://www.weeat4life.com

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