We got new wheels

The information is overwhelming and the more we learn about muscle dystrophy the more we begin to embrace the challenges that need to be dealt with. Besides the anxiety that we feel every single day when we send Marcus to school, thinking what if he falls in the class, in the playground, what if he gets pushed around and so on, we also have to start recognizing the behaviors that are associated with people with DMD.

Tell-tale signs that we once dismissed as just part of a growing up kid’s life are now becoming to make sense. These signs we realized just now are psychosocial issues commonly exhibited by people with Duchenne Muscular Dystrophy or DMD.  According to www.parentprojectmd.org, there are things to watch out for:

  • He has delays in language development or problems with communication.
  • He has difficulty interacting with others and/or making friends.
  • He is often angry, argues a lot, or is very inflexible about what he wants to happen.
  • He is forgetful or absent-minded, or has difficulty paying attention.
  • He is very quiet and withdrawn, and prefers to be by himself.
  • He is very fearful or anxious.
  • He often has a negative/pessimistic attitude or says bad things about himself.
  • He has difficulty learning new academic skills or earns poor grades.
  • He has rituals or routines that have to be followed in a particular way.
  • He has difficulty sitting still, is impulsive, or very impatient.

(See article here.)

All these are behaviors that we have observed from Marcus even before we learned he has DMD (likely). There are two traits, however, that are just starting to come out: difficulty starting to learn new academic skills and saying bad things about himself.

His first wheelchair. Picture taken inside a Healthy Options store where we bought CoQ 10.

While there were some challenges in school, so typical of a preschooler, grades weren’t among our problems. In fact, Marcus finished his three years in preschool being on top of his class, albeit a small one. The possible reason he is now beginning to fall back is because we have stopped putting some pressure on him to excel in school. We learned that writing alone could stress out the muscles of those with DMD which perfectly explains why Marcus complains getting tired after writing for a couple of minutes.

Our trip to the doctor just this last Thursday also confirmed that Marcus would soon find writing using a pen or pencil a hard task to accomplish. She cites one patient that have to eventually ask to be permitted to write on a tablet instead on paper while in school. She said that dropping out of school due to difficulty in catching up with the other kids is a possible scenario.

On this same visit we finally had all the recent tests interpreted. The one that struck us the most is the CPK result. Marcus’ blood test was off the chart. According to the doctor, there is so much dystrophin wasted by Marcus’ system as seen from his CK reading—his was around 15,000 when a normal range should be around 150 units per liter. It was that bad. For now, the doctor prescribed a couple of supplements that should help somehow balance our kid’s system. He is to start taking Coenzyme Q10 for his heart and Diamaxin for his muscles. In 3-6 months, we will see if these drugs will improve something.

He can still dance but just briefly. (Photo taken inside SM South Mall after a trip to the nearby UPHMC.)

***

 Mood: 5/10 Honks! (Off to Batangas, first time to check the lot up close.)

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