Daily Life
- Finding the right ergonomic is key for progress: feeding chair, walker (cf. above picture), stander, ... Yes, these are expensive but a secondary market exists.
- Find a good professional to create the right splints for your child. If the legs hypertonia is too strong, they may want to wear them also during the night.
- Bones: Vitamin D & Calcium are keys to support bone metabolism. Due to lack of walking and hypotonia, MINPP1 kids may tend to have less bone density. In addition, some seizure control medicines affects Vitamin D assimilation in the body. Consequently, taking both Vitamin D and Calcium daily is critical. Keep an eye an ankle mobility. Do daily stretching and massage on all body. Make sure legs are not open during the day and the night. This may lead to hips bones growing too wide. Sleeping on the side and a good posture during feeding will prevent this.
- Dentistry: it is not easy to clean mouth twice a day fully. We recommend to see the dentist twice a year to do a full teeth scaling and look for cavities. Buccal hygiene is a focus since the saliva is stagnating more due to less swallowing.
- Ophthalmology - Cataract: on top of creating the Cortical/Cerebral Visual Impairment (CVI), MINPP1 also affects the eye as an organ. As you can read in the research articles, MINPP1 children may have early cataract. This was the case for Bianca: cataract built up between the ages of 2 and 4 years old. Her cataract was thick and rubbery by the age of 5. After a cataract surgery, permanent lenses were installed (for far vision). Finally glasses are added to support close vision.
- Vibrating oral motor tools: we use them 2 minutes before each meal for warm up. https://www.arktherapeutic.com/arks-z-vibe-vibrating-oral-motor-tool/
- Water Thickener: to avoid coughing or chocking on liquid intakes like water. Bianca prefers Nestle Thicken Up Pure Powder.
