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!!!

 

 

 


The Memory of a Sickle Cell Warrior Princess and Beauty Queen Lives On Through Shak’s Hope

September is Sickle Cell awareness month and all over Facebook Sickle Cell Warriors and their families have changed their profile pictures to add awareness frames.  Warriors are sharing facts about Sickle Cell Anemia and discussions surrounding this “rare disease” are happening more and more frequently.  As we share facts about the disease itself we are also sharing our personal experiences with this life threatening and debilitating disease.

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Sickle cell anemia an inherited form of anemia — a condition in which there aren’t enough healthy red blood cells to carry adequate oxygen throughout your body. ( 1 )

Sickle cell disease is a group of inherited red blood cell disorders.  In the United States, most people who have sickle cell disease are of African ancestry, but the condition is also common in people with a Hispanic background. Because the disease runs in families, couples planning to have children can have genetic testing. ( 2 )

Warriors diagnosed with Sickle Cell disease may experience frequent pain, organ damage/failure, strokes, pneumonia and a host of other debilitating outcomes as a result of the disease.

It is difficult for some to understand exactly what Sickle Cell Warriors experience because many warriors keep their struggles a secret. They suffer and don’t share gruesome details of the pain they are experiencing.  When speaking with Andrea Hall about her daughter, Shakira Martin, we talked specifically about the “shame” some warriors feel and where it stems from. Andrea shared with me that Shakira did not want anyone to pity her.  She wanted to be like everyone else. She requested her port be placed out of sight so that attention would not be drawn to it.

According to her mom Shakira always had a special zest for life growing up and it continued into adulthood. “Her determination to live a happy fulfilling life transcended all pain.  She made it her life mission to not suffer in silence and wanted her fellow sicklers to do the same” Shakira traveled the world and enjoyed playing mas during Carnival.  She was the life of the party and I can vividly imagine her breaking out of the hospital to go see Beyonce on tour.

One of her biggest accomplishments was embarking on a year long journey to become Miss Jamaica Universe 2011. She was healthy the entire year during the competition and she won!

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Shak Dolphins

Shakira had the idea of starting a foundation to help raise funds for other warriors to encourage them to “Live no matter what!” She knew all too well what it meant to be in pain and stuck in a hospital room.  Thus, Shak’s Hope was born. Shakira lost her battle in Aug 2016 and her mom Andrea leads the foundation in her honor.

ShaksHope_logo-Header

Shak’s Hope provides services, awareness and quality to those affected by Sickle Cell Anemia in South Florida and the Caribbean.   Please consider donating, volunteering or sharing their services with Sickle Cell Warriors who may benefit from the support.

Shaks hope image


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

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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.

*Disclaimer – This post contains affiliate links

https://youtu.be/4B27JH-3slU


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


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.


No Mom Should Receive Devastating Medical Results Over the Phone

“Your child has tested positive for strep. A prescription for antibiotics has been sent to the pharmacy for him to start today.”  This is a pretty common phone call for a parent to receive when they have small children.  Daycares and schools are bacterial war zones and kids are constantly bringing home unwelcomed viral and bacterial guests.  Its convenient for doctors to unload this type of medical information over the phone to busy parents.  In fact as a mom of two small toddlers I welcome this kid of consideration for my time.  When I have a doctors appointment for my 3 and 4 year old I’m anxious just thinking about getting a parking space close to the office and then schlepping the boys into the office and back to the car.

When I took my first HIV test many years ago it was a huge deal to come in to get your results.  Even though the results were negative I had my sister there for support.  The social worker was present to counsel me before and after the results.  This type of support is warranted for these types of life altering medical results.  However, this is not the support I received when my 5 week old son was diagnosed with Sickle Cell Anemia.  This debilitating disease is known to cause life long pain and numerous health issues which include stroke, organ damage and death.

My car desperately needed to be washed so I stopped at the car wash quickly before heading back to my new baby.  Dylan was 5 weeks old and I had just shared a photo of him on my social media.

Dylan 1st Pic Face.jpg

At the car wash my phone rings and I answered an unfamiliar number not knowing the life altering words I was about to hear.  I wonder how many times the woman on the other end has had to deliver heart wrenching news in her career.  How does she handle the guilt of literally ripping parents’ hearts straight out of their chests?  She said it so matter of factly.  You delivered a baby on  **.  His newborn screen came back positive for sickle cell anemia. We need you to bring him in ………….I had an outer body experience at this very moment.  Watching myself react to what literally was the worst possible news that I could hear.

I don’t really recall what I was feeling.  The tears started forming automatically and on cue.  What? You must be mistaken.  He has the trait right? I have the trait.  He doesn’t have sickle cell disease? Right?

No-one should receive news like this at a car wash 5 weeks post delivery.  This is standard procedure I’m assuming, but I had to come in for my HIV results because of the possible emotional impact of the news. Why is it acceptable for a new mother to receive this type of news on the phone and alone.

I’m sure the employees were wondering what had just happened.  They looked at me strangely as I drove off crying hysterically.  I’ve never cried so much in my life.  My thoughts were scattered all over the place.  Literally my pregnancy and delivery 5 weeks ago flashed before my eyes.  My sweet 9lb hairy baby, no seriously Dylan was the hairiest baby I had ever seen.  He was born with a head full of hair and hair covering his arms and back. I remember laughing in the delivery room at how hairy he was.  For the first 4 mos of my pregnancy I swore Dylan was a girl.  What does a boy need with all this hair? I thought looking at his head.

I knew I had the sickle cell trait.  When I was pregnant with my oldest son I was tested and was informed then I had the trait.  My mom told me it was her dad who passed his trait on to his children and now grandchildren.  I had no idea Dylan’s father had the trait.  I was healthy my entire pregnancy and there were no signs of any issues.

When I got home I cried some more as I nursed my baby who has now been identified as a Sickle Cell Warrior.  What would his life be like? Would he be in pain his whole life? Would he die at a young age? There were too many thoughts flooding my mind for me to process any of them.  Tears were the only answer.

This story would be completely different if the phone call would have been simply to schedule a new born screen follow up appointment.  The diagnosis would still be the same, Dylan would still have Sickle Cell Anemia.  However, my questions could have been answered, my fears calmed and I could have been equipped with information on how to protect my sweet little hairy baby.