Today, we will be giving you an update on medications that Kemett takes!
- 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
- Antibiotic cream– in nose to prevent nosebleeds. He’s has a few this winter. 2X a day.
- 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
- Growth Hormone: His dosage to .6 mg. He gets an injection each night.
- Albuterol- Nebulizer/Inhaler
- B-12- 2 X a Month Shots- Kemett is B-12 deficient. This also helps with energy levels.
- 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!