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. 🎉🎉


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


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.