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!!!

 

 

 


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