PWS Awareness Month- Day 7

Hey Everyone,

Today, we will be giving you an update on medications that Kemett takes!

Morning:

  • L-Carnitine– This medication is used to give our kids energy and to build lean muscle mass. This year we took him off of it for a month to see if he really needed it because he is pretty energetic, and he was sleeping until 8 am and falling asleep in the afternoons (ok maybe that’s not a bad thing for a kid who doesn’t nap!), so we put him back on it.
  • CoQ10- Also used for energy.
  • Nexium– Reflux (Kemett has Eosinophilic Esophagitis- another rare disease that has nothing to do with PWS).  Has to be giving 20-30 minutes before a meal.  We give this to him 1x a day and are waiting for scope results.
  • MCT Oil– Helps with focus, developing the brain, appetite and building lean muscle mass.
  • Calcium Supplement
  • Culturelle Pro-biotic– Kids with PWS have major GI issues.  Because Kemett is on Nexium twice a day, he needs the probiotic to help keep his gut healthy.
  • Nasonex– This is keeping fluid out of his ears, prescribed by ENT.
  • Qvar Inhaler-Kemett has allergy induced asthma.  This has been amazing in stopping a lot of illness- we are off from now until right before school starts.
  • Iron Supplement
  • Multivitamin
  • Antibiotic cream– in nose to prevent nosebleeds.  He’s has a few this winter. 2X a day.

Evening:

  • Qvar Inhaler- Again we are off of this right now.
  • Singulair- Prescribed by our Pulmonologist.  This has helped with any inflammation in Kemett’s nasal cavity and ear canals.
  • Zyrtec- Allergies

Before Bed: 

  • Growth Hormone: His dosage to .6 mg.  He gets an injection each night.

As Needed:

  • Albuterol- Nebulizer/Inhaler
  • B-12- 2 X a Month Shots- Kemett is B-12 deficient.  This also helps with energy levels.
  • EpiPen
  • Pulse Oximeter- Just spot check one because insurance denied coverage on his pulse ox.
  • Desonide Cream– For his eczema

Everything he takes has been approved by one or multiple doctors.  We make sure everyone is aware of what is going on and why he is getting them.  I also keep a sheet with all the meds and doses listed out.  Things change quite frequently, so I want to make sure everyone is on board.

Let us know if you have any questions!  Thanks for your support!

Love,

The Demands

 

IMG_4960

Kemett’s Medications and Supplements

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PWS Awareness Month- Day 7

Hey Everyone,

Today, we will be giving you an update on medications that Kemett takes!

Morning:

  • L-Carnitine– This medication is used to give our kids energy and to build lean muscle mass.
  • CoQ10- Also used for energy.
  • Nexium– Reflux (Kemett has Eosinophilic Esophagitis- another rare disease that has nothing to do with PWS).  Has to be giving 20-30 minutes before a meal.  Hope to go down to 1X a day later this month!
  • MCT Oil– Helps with focus, developing the brain, appetite and building lean muscle mass.
  • Calcium Supplement
  • Culturelle Pro-biotic– Kids with PWS have major GI issues.  Because Kemett is on Nexium twice a day, he needs the probiotic to help keep his gut healthy.
  • Nasonex– This is keeping fluid out of his ears, prescribed by ENT.
  • Qvar Inhaler-Kemett has allergy induced asthma.  This has prevented us from heading to the ER for major resporitory issues.  Kemett started Qvar last August after having retractions while breathing and having to go to the ER.  We get to stop Qvar for the summer as long as Kemett stays healthy.  Fingers crossed!
  • Iron Supplement

Mid-Afternoon

  • More MCT Oil
  • Fish Oil as needed

Evening:

  • Qvar Inhaler
  • Singulair- Prescribed by our Pulmonologist.  This has helped with any inflammation in Kemett’s nasal cavity and ear canals.
  • Nexium
  • Zyrtec- Allergies

Before Bed: 

  • Growth Hormone- In January we increased his dosage to .6 mg.  He gets an injection each night.

As Needed:

  • Albuterol- Nebulizer/Inhaler
  • B-12- 2 X a Month Shots- Kemett is B-12 deficient.  This also helps with energy levels.
  • EpiPen
  • Pulse Oximeter
  • Desonide Cream– For his eczema

Over winter, we had to do a skin test for our allergist and went off of all allergy meds for 7 days.  Kemett developed a runny nose, cold and low grade fever pretty quickly.  As soon as we got him back on the meds it all went away.  I’m sure to some this may seem excessive, but we must be preventative and cannot let him get so sick that he ends up in the ER.
Everything he takes has been approved by one or multiple doctors.  We make sure everyone is aware of what is going on and why he is getting them.  I also keep a sheet with all the meds and doses listed out.  Things change quite frequently, so I want to make sure everyone is on board.

Let us know if you have any questions!  Thanks for your support!

Love,

The Demands

 

IMG_4960

Kemett’s Medications and Supplements