Open Letter to Rickey Smiley: ……..and anyone else who thinks dying from Sickle Cell is a Joke.

Dear Rickey Smiley,

My son Dylan was diagnosed with Sickle Cell Anemia at 5 weeks old. Sickle Cell Anemia is an incurable blood disorder that causes pain when sickle shaped red blood cells are trapped in blood vessels. I remember our first doctors appointment where the hematologist taught me how to check my newborns spleen to see if it was enlarged and how to assess whether my 5 week old had suffered a stroke.Both enlarged spleens and strokes are common in patients with Sickle Cell Anemia.

I also remember at 5 months Dylan was hospitalized with a fever. By the time we left the hospital his hands were so swollen and in pain he refused to let anyone touch them or hold his bottle. His sickled red bloodcells were trapped in the tiny blood vessels in his 5 month old hands.

Over his short 5 year old lifespan he’s been in the hospital numerous times some times for weeks at a time. One of the most devastating stays was a painful crisis that rendered him unable to walk when he was 2 yrs old. During this stay he cried out in excruciating pain while I tried to hold it together and decide whether morphine was the best choice for my 2 yr olds 20 pound body.

Did you find any humor in the 3 experiences I just mentioned? Was there any thing funny about witnessing a baby in pain? While reading did you think this is great comedic material? Dylan hasn’t even experienced half of what some other Sickle Cell Warriors have experienced at his age. Some have already had multiple blood transfusions, spleen removal, strokes and other Sickle Cell related complications before the age of 5. Life expectancy for women with Sickle Cell Anemia is 48 and for men with Sickle Cell is 42 yrs old. http://scinfo.org/2018/01/11/sickle-cell-news-for-january-2018/

It was extremely irresponsible for you to list Sickle Cell in the list of fake ailments in your church obituary skit. Your platform is huge and includes many Sickle Cell Warriors? their friends family and loved ones. None of them found this to be funny. In fact if you read the numerous comments on your page and on YouTube you will see how hurtful this joke was to your fans. It was unnecessary for you to include Sickle Cell Anemia in your skit. Its hurtful that this life threatening and life shortening disease is not even taken seriously in our own community.

In December 2018 the government finally decided to take Sickle Cell Disease seriously by approving the law that will increase funding, research and treatment options for the Sickle Cell community

https://www.nbcnews.com/news/nbcblk/bipartisan-bill-aimed-fight-sickle-cell-disease-signed-law-trump-n949691 (

Sickle Cell Anemia primarily affects the black community , your target audience. You will never find a comedian joking about Tay-Sachs or Cystic Fibrosis which are rare diseases that affect a very specific population. These diseases affect less people in the US yet they receive more funding and resources than Sickle Cell Anemia.

Everything is not meant to be a joke or taken lightly. Please consider using your platform to provide more awareness around Sickle Cell Anemia so that others will take our warriors seriously as well. Often are warriors are treated poorly by the medical community who assume they are drug addicts when they come in complaining of pain. Sickle Cell Warriors need the support of their community without being the butt of a poorly thought out joke.

Update – The YouTube video of the segment has been removed thankfully.


Sickle Cell Warrior Dylan Celebrates his 5th Birthday and 1 yr with NO Hospital Stays!!!

As I type this Dylan is sleeping in his room with his younger brother.  I think about how many times they’ve been separated because of Dylan’s countless hospital stays.  In fact when I was in labor with his younger brother Dylan was admitted into the hospital.  I gave birth on one floor of the hospital while Dylan was a patient two floors below.  Two months later he was admitted again.

For a moment I believed this was going to be our life forever and that his Sickle Cell diagnosis would keep us bound to a hospital room every couple of months. Most of his hospital stays were due to elevated fever and viral infections.  Some bacterial infections as well including Pneumonia and Strep. His first pain crisis devastated me. My active toddler could not walk due to the pain in his feet. Unlike his other hospital stays Dylan cried for hours and could not sleep during the night. Motrin and Tylenol were not able to successfully eliminate his pain.  This is when they offered my 2yr old morphine. I could not conceptualize giving his tiny 20lb body such a strong drug. Plus if we start morphine at 2yrs old where do we do from here? If he has pain as an adult morphine will be useless if he starts at 2.  I agreed to Tylenol with Codeine and thankfully it worked.

If you’ve ever spent any time in a hospital you know that this isn’t an ideal place for healing.  The nurses will tell you they found me sleeping in Dylan’s crib most nights and wondered how I managed to fit and sleep in a hospital baby crib. I could never leave Dylan alone in the hospital. My sweet little hairy baby.  As he got older I would leave for a few minutes to grab coffee before he woke up.  Once, while we were admitted, a warrior was receiving a blood transfusion and his mom left him alone for hours and he yanked out the tubes and blood was all over his room.

 

2nd Hospital stay June 2014

After countless hours of research, I finally found the right mix of vitamins, minerals and herbs. We also completely cut milk and almost all other dairy products from Dylan’s diet. We also limit meat consumption.  I’m truly grateful that for 1 full year we have not had to spend one night in the hospital or one second in the ER.  Dylan has also been pain free for almost 3yrs.

In the last few weeks we have added EvenFlo to the mix.  Only because his hemoglobin has remained 7-8 and hasn’t budged despite his vitamin regimen.  I’m hoping for a nice increase in his hemoglobin in the next few months.  I’ll report back when we have the results.

mom and dylan fly

Now for the celebration!!!!

In the last year Dylan has lived a very full life! He spent a full year in Pre K with no sickle cell related absences, pain, or hospital stays.  He has been to the pool and beach multiple times.  We even went indoor skydiving with his older brother.  Dylan rode his scooter over 2 miles in Prospect Park without even blinking an eye or taking a break.  In fact he had to come back to get me a few times because I was moving too slow.

We pray that with proper hydration, diet and supplemental vitamin and herbal nutrition Dylan will continue to live a full pain free life.

Happy 5th Birthday Dylan!!!

 

 

 


Today We Celebrate 10 Months Since Warrior Dylan’s Last Hospital Stay

It’s a celebration!!! Today marks 10 mos since Dylan has been hospital free! We celebrate every month bc we are sooooo grateful! We are not about that hospital life.

Someone asked recently. How is it that Dylan hasn’t had pain in almost 3yrs (Jan 2019 makes 3yrs) but has been in the hospital during that time. Why is he going to the hospital?

Sickle Cell patients are prone to picking up bacterial infections and viruses easily. Their immune system can be compromised by a poorly functioning spleen which many times must be removed very early on. Protocol is that if a SC patient has a fever of 100.4 they must go to the hospital. Usually they have to stay for at least 48hrs to see if the bacteria grows in the culture they take upon arrival. Fever must be gone for at least 24hrs.

Dylan’s last hospital stay we were there for 36hrs for a fever. He was doing so well they let us go early. We are so grateful that our natural regimen is working.

Dylan (at 8mos) below with his great aunt Demetria. Today is her birthday. 🎉🎉


Warrior Mom Highlight – Mom Chooses Natural Approach to Treat Her Daughters Sickle Cell Anemia

Warrior Mom Tamika Norman shares her experience with Sickle Cell Anemia.  Her daughter Micah has been diagnosed with Sickle Cell Beta Thalassemia.  Tamika has chosen to take a natural approach to this disease vs the traditional methods of treating Sickle Cell Anemia.

“My daughter Micah is an 11 year old with Sickle cell-Beta Thalassemia. She was diagnosed at the age of 14 months. What made me go check her out? I noticed that Micah was very small (weight size) for her age and she was a “cry baby”. She would always cry for no reason but since she was my first child I always thought she was just spoiled and wanted to be held. As far as the weight gain if I remember correctly at 13 months she had only weighed in at 16-18lbs. I was referred by a family friend to take her to Children’s Mercy Hospital & see a specialty pediatrician to see what the issue was. Well Dr.Woods did her screenings and test results came back as her having Sickle cell-Beta Thalassemia. More than likely that’s why Micah was not eating or gaining weight.

At 14 months Micah had her first crisis and she was admitted to the hospital for high fever. Her hemoglobin count was not where it needed to be. Micah’s hospital stay was 7 days.

Most of the complications she has experienced has been fever and very seldom does she experience pain. The first medication Dr Woods prescribed her Penicillin, which Micah was allergic to. Then it was a different antibiotic (I don’t remember the name) that she took until the age of 5. For precautions: I/family kept Micah in a bubble. I did not allow her to go outside if it was too cold or hot. I remember not allowing her to ride in grocery store carts, we did not allow anyone to come visit if they had any sign of a sniffle or cough. She pretty much stayed inside until it was time for a doctor appointment. As Micah got older and needed to start school and she was talking on her own to where people can understand her need we did not allow her sickness hold her back from being a child. It was hard to do but it was best for Micah to start exploring on her own.

After age 5 Micah was taken off the antibiotic and we only kept Tylenol w/codeine on hand for pain and Motrin for fever.

She really didn’t have much of a problem during her younger years until she had another crisis March 2017. This was a nightmare I wouldn’t wish on anyone.
During this time all the symptoms were symptoms Micah & I had never experienced before. She had an acute chest problem, heavy breathing, pain, fever and not eating. When Micah screamed at me that she couldn’t breath I was lost all I remember in doing was to put my faith in God & to remain calm because again we had never experienced this. During this time Micah was admitted for about 2-3 weeks because she couldn’t breath on her own & the doctors couldn’t keep her temp down and she had received 2 or 3 blood transfusions. So in all she was down for the entire month of March.

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After the nightmare & Micah finally being herself and doped up with several different antibiotics I noticed Micah had lost weight, skin felt frail and her hair was shedding dramatically I started researching other options to keep her healthy but didn’t know where to start. One night I just so happened did a FB search on Sickle Cell and Tamika Mosley name came she’s an Sickle Cell advocate and assists families interested in taking a natural approach to Sickle Cell. I reached out to Tamika for advice, subscribed to her YouTube channel she had at the time and joined her group and since then  was the best the natural approach has been the best thing I could have done for Micah.

Micah is gaining weight, her hair is almost back to where it used to be, skin don’t feel frail overall I can say “she’s healthy!

The remedies we currently use for maintenance:
high dosage of Vitamin C 4kmg at morning & 4k at night.
Evenflo; 2 capsules a day. 1 morning & 1 night

For infection/pain: 4k vitamin C every hour, ginger capsules 2 once every 3 hours & increase dosage of Evenflo for pain.

For allergies: ACV, water & honey.
ginger capsules every hour

If only I can get her off of dairy(whole milk) I think we are perfect. Since shes love it and it’s adding the weight she needs I’ll let her continue to drink it.

We love the Hematology team who care for Micah! I haven’t had any problems with them at all. The only thing that irritates me to the EXTREME is when they praise Micah & I for eating healthy, but then will turn around & ask me if I want to do a bone marrow with my other daughter. When they start talking like that to me it ticks me off because now I feel that they see my baby as a “money bag” and they have to get money from somewhere when they’ve already told us to “keep up the good work” so in my mind which one is it.

I believe with my response I had given the team they no longer ask me about doing any studies or tests to “experiment” on Micah. I just think it’s a money scheme and I don’t think of my baby or anyone else child that has this disease as a “money bag”.

If you are a warrior mom with a child diagnosed with a serious illness and would like to share your journey with our community please email healthywarriormom@gmail.com


Choosing the right doctor for your child is one of the many important responsibilities you have as a new parent.  The anxiety and stress this decision causes is not without reason.  Your child’s pediatrician will partner with you in your child’s medical care for the next 18 yrs.  Whether your child is healthy or has been diagnosed with a serious disease,  all parents strive to have a highly qualified doctor treating their child. My oldest is almost 18 yrs old and has had at least 3 pediatricians. I’ve also navigated Dylan’s care with pediatric hematologists and other specialists.   Here are some tips/questions I put together as an experienced mom of 3 boys to help with your search.

1.How long have they been practicing? 

I prefer to have a doctor who has years of experience, but stays up to date with new research and findings.  This can be a challenging breed of doctor to find.  Many experienced doctors are stuck in routines and don’t challenge these routines with new paradigms.  New doctors don’t have the hands on experience the text books can’t teach. Knowing how long the your doctor has been practicing is valuable in understanding their approach to medicine.  I would also research where they went to school.  Remember this is your partner and having as much information about their background will give you some insight to their thought process.

2. How diverse is their patient population?

Different communities are affected by different medical trends.  In the African American community we are not heavily impacted by lice, while the Caucasian community is not impacted by Sickle Cell Anemia.  Your pediatrician should understand disease states that may affect your child and your family. Understanding with anecdotal experience vs textbook experience is completely different.

3. Do they offer same day/walk in appointments?

Schools and daycares are cesspools. If your child is not in a protective bubble chances are they are going to be infected with something.  Your pediatrician should be accessible for those emergencies.  I don’t like dragging sick babies to the ER and try to avoid the ER at all costs.

First, an Emergency Room visit is pricey.  Especially if you don’t have insurance or a high insurance deductible your visit could literally cost thousands.  Second there are tons of bacteria festering in the ER.  Chances are you will leave with something you didn’t bring with you. Who are these ER doctors anyway ? Most of the times they are students practicing on your child and even if its an experienced doctor you have no idea about their philosophies and medical approach. Lastly, continuity of care is crucial.  This strange doctor has no clue about your child’s medical history and relies on your ragged memory to provide details that help them make medical decisions.

Some parents decide to choose Urgent Care instead of the ER for emergencies. They are cheaper and you’re not waiting as long to see a physician. My only issue is I don’t have a relationship with the urgent care doctor.  My other concern is continuity of care and keeping all of my children’s medical information in a central location.  When you have one child this may not be such a big deal, but when you have 3 and 1 with a serious illness this is crucial for my sanity.

4. Are they available after hours?

Accessibility is key.  I need to be able to speak to someone in the middle of the night if there is an emergency.  As a new mom you’ll discover the middle of the night is when things go wrong.  Fevers spike, vomit is spewed and nasal passages are blocked.  It never fails that nights are when things go awry for sleep deprived parents praying for a full night of rest. A call to your pediatrician should ease your fears or alert you when there is a need to seek immediate medical attention.

5. Do they have a child friendly bedside manner?

My oldest sons 2nd pediatrician had a horrible bedside manner.  She had resting bitch face and never made attempt to make him feel more comfortable in her office.  This is probably why he was deathly afraid of needles and getting blood drawn.  I liked her because she and I had similar philosophies about antibiotics, but when we moved I quickly switched pediatricians even though I still shopped at the supermarket near her office.

Pediatricians should at the bare minimum attempt to make your child feel less anxiety in their office.  Some people are not built to deal with children and they should not be teachers, pediatric nurses or pediatricians.

This will be difficult to assess without actually seeing the doctor interact with a child.  My suggestion is to get referrals from mommy/daddy friends and ask them this question.

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6. What hospital are they affiliated with?

If possible you should choose a physician affiliated with the hospital where you’re delivering.  It makes the transition from birth to first visit seamless.  They will be able to visit the baby in the hospital and have access to their medical records via their digital records system.  Trust me my pediatrician is NOT affiliated with the hospital we typically go to for Dylan’s care and it can be a nightmare keeping her in the loop with hospital stays and lab work.

7. Do they treat children who are not vaccinated?

Many parents are opting out of vaccinations because of their link to autism and other side effects.  Some doctors are choosing not to accept these patients.  Even if you decide to vaccinate and then change your mind at some point you should know where your pediatrician stands on this issue.  Also if you’re not sure about vaccinations you don’t want your pediatrician attempting to convince you to make a choice you’re not comfortable with.

8. When do they prescribe antibiotics?

There is a very lengthy discussion that needs to be had about over prescribing antibiotics, but I wont dive into that pool here.  Find out specifically when they prescribe antibiotics.  Some doctors prescribe antibiotics more freely because patients come into the office with symptoms and demand treatment.  They prescribe to satisfy the patients and not because antibiotics are truly warranted. Understanding the philosophies of the practice is key when making your decision.

9. Do they have the ability to run labs in their office? 

This is about more than convenience.  If the office does not run basic labs they will have to send out your child’s “sample” and wait 24-48 hrs for results. In the case of strep throat and antibiotics are needed two scenarios will play out. The doctor will prescribe antibiotics in anticipation of a positive test result.  Or they will wait for the result and prescribe antibiotics the next day when a positive result has been confirmed.  Either scenario doesn’t sit well with me.  Should I be preemptively giving my child antibiotics without a confirmed diagnosis? Or should I be waiting 24 hrs while the bacteria festers untreated? If they are able to test in the office I receive the results immediately and can proceed with treatment accordingly.

10. Do they listen when you voice your concerns? 

This is another reason to get referrals.  Some doctors are programmed in the way they see patients.  Many of them are overbooked and only have 15 min to spend with each patient or less. Your mommy/daddy friends will be able to tell you if their pediatrician is rushing in and out of the room barely listening to the symptoms the child may be experiencing.  My personal physician asks tons of questions and listens closely to my responses.  He also poses very well thought out follow up questions.  I truly love his approach to my care and I never feel rushed in his office.  Choose a pediatrician who makes you feel comfortable discussing your child’s needs.

A pediatrician is there to help you assess a myriad of issues throughout your child’s life including developmental delays. sickness and even behavioral concerns.  Choose wisely.

Choosing a Pediatrician – 10 Questions to Ask Before You Decide