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!!!

 

 

 


10 Natural Supplements That May Benefit Sickle Cell Anemia Patients

I have been asked many times to share the list of Vitamins and Herbs we use to keep our Sickle Cell Warrior Dylan healthy.  Dylan is 4 years old and has been taking most of these for close to 2yrs or more.  These are the exact brands we use for his care.  I notice differences when we’ve tried other brands so I’ve stayed loyal to these specific brands.

Liquid Chlorophyll 

Dylan has been taking this brand of Liquid Chlorophyll for over 2 yrs.  In my initial research on natural ways to treat Sickle Cell Anemia this potent plant supplement came up consistently.  I also give it to my younger son and it helps with his stubborn bowels.  This is where we started our natural journey and I believe it has truly been integral in keeping Dylan crisis free for over 2 years.

“On a molecular level, the structure of chlorophyll is very similar to heme, which is a part of hemoglobin present in human blood. Heme, which is what makes blood appear bright red once exposed to oxygen, is bound to proteins forming hemoglobin. Hemoglobin carries oxygen to the lungs and other respiratory surfaces to be released into tissues throughout the body.” (1 )

 

Folate  

The Hematologist prescribed Folic Acid for Dylan immediately.  After discovering the dangers of Folic Acid, which is the synthetic form of Folate we switched to this brand of Folate which Dylan takes daily.  I wrote a full article on Folic Acid here if you’d like to read more.  Folic Acid Facts

Vitamin D3

Vitamin D deficiency is running rampant in all populations, but is extremely high in Sickle Cell patients. I’ve read numerous articles that suggest 98% of the Sickle Cell population having a Vitamin D deficiency. The research for the Vitamin D3 as it specifically impacts Sickle Cell patients is ongoing.  There are currently studies in process to assess the benefits of high doses of D3 up to 7000 IU daily for SCD patients.

“Research in school aged children shows that taking a vitamin D supplement during winter might reduce the chance of developing seasonal flu……..Some additional research suggests that children with low levels of vitamin D have a higher chance of developing a respiratory infection such as the common cold or flu. ” (2 )

Dylan has been diagnosed with the Flu, RSV and Pneumonia.  All of these were lengthy hospital stays.  Since we started him on a high dosage of Vitamin D3 (5,000 IU) he has not had any severe respiratory symptoms. He had one short hospital stay which was less than 48hrs due to fever, but because his numbers were so good they sent him home.

Vitamin E

Vitamin is new to our regimen. Dylan has been taking it for less than a year.Here are my thoughts as a non medical professional.  Sickle Cell is a silent disease at times and you can forget what could be possibly occurring in the body.   When I’m evaluating supplements I always consider that red blood cells have the potential to be sickling and not causing pain, but causing silent damage to organs.  When I see improved blood circulation or “anti inflammatory” I always investigate those herbs or supplements further.

“Vitamin E is an antioxidant and eliminates fatigue by promoting blood circulation and can also strengthen your capillary walls and nourish your cells.” (3)

Zinc

Zinc is well know for its immune boosting properties.  Its included in almost every natural cold remedy and cough drop sold on the market.  What I didn’t know was “Zinc can help with a liver cleanse to reduce inflammation in the liver, reduces free radical damage, helps with nutrient absorption and allows for proper waste elimination” (4)

Sickle cell patients typically have jaundice (yellow eyes) because their liver is processing dead red blood cells.  Sickled cells typically die 10-20 days where normal red blood cells live on average 120 days.  The liver eliminates waste from the blood and when there is a back up of waster jaundice can occur.

B 12

“Vitamin B12 deficiency anemia is a condition in which your body does not have enough healthy red blood cells, due to a lack (deficiency) of vitamin B12. This vitamin is needed to make red blood cells, which carry oxygen to all parts of your body. Without enough red blood cells, your tissues and organs don’t get enough oxygen. Without enough oxygen, your body can’t work as well.” (5)

This describes every Sickle Cell patient.  More and more doctors are adding a full suite of B vitamins as standard treatment for Sickle Cell patients including B6 and B12.

L Glutamine

Endari or L Glutamine was approved by the FDA for treatment of Sickle Cell Disease in patients 5-58 in July of 2017.  I started giving Dylan L Glutamine in October of 2017. We use 1,000mg which is lower than the Endari doses used in the trials. Discuss this prescription with your Hematologist.  L Glutamine is an amino acid.

“Patients who were treated with Endari experienced fewer hospital visits for pain treated with a parenterally administered narcotic or ketorolac (sickle cell crises), on average, compared to patients who received a placebo (median 3 vs. median 4), fewer hospitalizations for sickle cell pain (median 2 vs. median 3), and fewer days in the hospital (median 6.5 days vs. median 11 days).  Patients who received Endari also had fewer occurrences of acute chest syndrome (a life-threatening complication of sickle cell disease) compared with patients who received a placebo” (6 )

L Arginine

“Nitric oxide is a powerful neurotransmitter that helps blood vessels relax and also improves circulation. Some evidence shows that arginine may help improve blood flow in the arteries of the heart. That may improve symptoms of clogged arteries, chest pain or angina, and coronary artery disease.” ( 7)

We have just added this to our regimen and give Dylan 1,000mg daily.

Burdock Root

“If you suffer from an enlarged spleen, burdock root can help. The spleen is a vital “guardian” organ that we rely on to keep the body free from infections, viruses and all kinds of dangerous pathogens. An enlarged spleen is a clear warning sign that the immune system is fighting hard to remove threats from the body but failing to do so because it can’t keep up with high demand.” ( 9)

During our first visit with the Hematologist she taught us how to check to see if Dylan’s spleen was enlarged. Many Sickle Cell patients have their spleen removed because of enlarged non functioning spleens.  I’m grateful that we have not had this issue with Dylan, but I am a firm believer in prevention is better than cure.  We give him 1g of Burdock Root daily.

Yellow Dock

“Traditionally, yellow dock root has been thought to be a blood purifier and general detoxifier, especially for the liver.” (8)

Dylan has been pain free for 2 1/2 yrs but it was not until I added Burdock Root and Yellow Dock did his jaundice improve.

I am not a doctor nor will I ever say that I have all of the answers, but what I do know is that Dylan has not had pain in 2 1/2 years.  His eyes are not yellow and he has not been hospitalized in 7 months. His last hospitalization was for a mild fever and he was released in 36hrs because he was doing so well.  He has never had a blood transfusion and his spleen has never been enlarged.  I know that we are on the right path.  My goal is to keep my warrior healthy and pain free using the most natural methods possible.


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.