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!!!

 

 

 


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.