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


8 Months with NO Hospital Stays – A Sickle Cell Warrior Celebrates Being Healthy & Pain Free

On Oct 2, 2017 I received a call from Dylan’s school. They recorded a fever and I needed to pick him up. I immediately took him to his Pediatrician who sent us to the ER.

While being admitted to the hospital and waiting for a room my grandfather passed away. This isn’t shocking as Sickle Cell Anemia doesn’t show up when it’s convenient. We’ve been in the hospital on Christmas, New Years and I even went into labor with my youngest son while Dylan was being admitted.

However, this last hospital stay was different. The fever never returned and his labs were decent. They let us go in 36 hours. My grandfather was already looking down on us from heaven.

While the date will forever be connected to the day my grandfather left this earth I’m beyond grateful that this was the last time Dylan was hospitalized.

Celebrate this milestone with us. We will be counting down every month Dylan is hospital free until Oct 2nd 2018 which will make a full year. We’ve never made it a full year in fact I held my breath the whole month of March. Every March since he was born we have been admitted to the hospital in March. 2014, 2015 ,2016 and 2017. A whole different meaning for the term March Madness.

This deserves a celebration! Dylan will be 5 yrs old a few days before we make a year. More reasons to celebrate. In January 2019 We’ll celebrate 3 yrs pain free! I’m beyond grateful that God has kept our Dylan healthy.

10 Natural Supplements That May Benefit Sickle Cell Anemia Patients

Dylan.jpg


5 Folic Acid Facts You Didn’t Know

Dylan was officially diagnosed with Sickle Cell Anemia at 5 weeks old.  We left our appointment with 2 prescriptions, one for Folic Acid.  The doctor explained that Folic Acid will assist in red blood cell formation, which is crucial for sicklers whose red blood cells die faster than normal red blood cells.  I didn’t do much research on it at first because I thought, like everyone else,  that it is a vitamin and harmless.  However, after doing some research on Sickle Cell Anemia, the potential harm of Folic Acid started surfacing.  The risks increase especially in high doses over a long period of time.  Sickle Cell patients take 1,000 mcg of Folic Acid daily for their entire lives.

1. Folic Acid and Folate are NOT the same

Folic acid is the synthetic form of Folate.  Its manufactured to mimic Folate.  Folate is a water soluble B9 vitamin that is naturally present in leafy green vegetables, beets and citrus fruits to name a few Folate rich foods. Folic acid is added to foods like cereal, bread and rice.  Folic Acid and Folate are used interchangeably by the medical community. You will hear doctors and nutritionists talk about Folic Acid and Folate as if they are exactly the same.  I recently read one article where the author uses both Folic Acid and Folate with noting any differences.

2. Folic Acid is Metabolized in the Liver

Why is this important? The MTHF enzyme required to metabolize Folic Acid has a low capacity, leaving unmetabolized Folic Acid in the blood stream to wreak havoc. Some people do not even produce the MTHF enzyme at all.  Folate is metabolized in the mucosal lining of the small intestine.

3. Folic Acid Increases your Appetite 

Folic Acid is often given to increase your appetite.  This may actually explain why pregnant women have insatiable appetites as they are directed to supplement with Folic Acid to prevent NTD ( Neural Tube Defects) in their growing fetus.  During my 1st pregnancy I gained 70lbs.  I incessantly ate fast foods and supplemented with Folic acid as directed by my physician. During my last 2 pregnancies I gained less weight due to me being more health conscious.  My <a href="http://Prenatal Vitamins” target=”_blank” rel=”noopener”>prenatal vitamins also included Folate and not Folic acid. Who knows if this is the reason for the difference but its definitely something I consider.  This doctor certainly thinks there is a link between over eating and folic acid fortification in foods.

4. Folic Acid may cause Cancer

Data from two Norwegian studies that included almost 7,000 heart patients treated with B vitamin supplements or placebo for an average of three and one-half years between 1998 and 2005.

During treatment, blood folate levels among patients who took 0.8 milligrams a day of folic acid plus 0.4 milligrams a day of vitamin B12 increased more than sixfold.

Folic acid and B12 supplementation was associated with a 21% increased risk for cancer, a 38% increased risk for dying from the disease, and an 18% increase in deaths from all causes. (1)

a) Increased risk in lung cancer

b) Increased risk in breast cancer in postmenopausal women (3 )

c) Increased risk of prostate cancer with daily supplementation of 1mg of Folic Acid.  (2 )

5. Folic Acid may cause Seizures

This has not been definitively proven, but what they know is there is a link between Folic Acid and Seizures.  One school of thought is that the risk is only for patients who have a history of seizures.  But WebMD lists seizures as a general side effect when taking doses greater than 1,000mcg daily.  Please consider if you take 400mcg in addition to eating cereals, rice and bread fortified with Folic Acid you may easily creep past the 1,000mcg mark daily.  Sickle Cell patients start at 1,000mcg and are presumably well above if eating fortified foods.

Our Choice:

After weighing the long term risks of Dylan taking 1,000 mcg of Folic Acid daily, We decided to switch him to this brand of <a href="http://Folate” target=”_blank” rel=”noopener”>Folate .

We also are relentless about checking for Folic Acid in any multi vitamin, and foods we consume as a family.  Reading food packages have become a way of life for us.  We realize that it is impossible to remove all toxins from our environment and foods, but we make the best effort to reduce the amount we consume.  Especially for Dylan because Sickle Cell Anemia compromises his immune system making bacterial infections potentially lethal. His liver is also overworked removing dead red blood cells and other toxins from his blood.  Our goal is to minimize the impact of foods and supplements on his body even if it requires me to spend all my days and nights researching.