7 reasons to free your child

8 reasons parents continue to tube feed their children

Subscribe today

to get our latest articles and e-books right to your inbox:

We currently find ourselves in an extraordinary situation. Quarantine will protect many, but it also enforces an increased level of social isolation.

Many of us are only familiar with stories from our grandparents, great-grandparents or with scenes from films we have watched. Remaining in our homes interrupts daily routines, which is confusing and challenges us to develop new strategies. Our children sense these changes. In some ways, they may revel in them, but at the same time, experience insecurity. As a result, it is important to establish structure to foster a sense of confidence and calm.

To help us all to get through this complicated time, we would like to offer some tips for managing daily challenges that you may find yourself confronting. This includes how to master day to day life in a way that provides ongoing support to your child in continuing to improve their eating skills.

For more than a decade, NoTube has been providing tube weaning and other eating therapies, including many for children without feeding tubes, in an online format.

We continue to be online for you on a daily basis and are available for general questions free of charge. 

General Tips

  • Follow preventative hygiene procedures.
  • Establish a new structure and set realistic goals for each day – this provides security and direction!
  • Plan your day as detailed as possible – this reduces feelings of helplessness and loss of control!
  • If necessary, ask friends and/or neighbors to do shopping for groceries or medicine for you. Look for organizations in your area that can provide support.
  • Stay in touch with your loved ones – social distancing does not mean having no contact with others, rather that we manage and experience the contact in a different way (video conferencing, telephone conversations, writing emails and letters, through social media…) – this helps provide a firm footing and we feel less alone with our concerns.
  • If you should experience any known symptoms (fever >38°C / 100°F, shortness of breath, cough, acute respiratory distress), do not hesitate to seek help and support quickly. There are various helplines available depending on your place of residence. Your regular doctor should also be able to provide further instructions.
  • Use the extra time that home isolation may provide to stay active, both physically and psychologically. Body and mind are one.
  • The current COVID 10 crisis causes feelings and thoughts that have not previously arisen. It is important to recognize these and accept them. We know this is easier to say than to do. Remember, your emotions are a normal reaction to an abnormal situation:
    • Avoid alarmist information (be critical and turn to dependable sources, e.g. information from your government; for US: Center for Disease Control www.cdc.gov, etc.)
    • Focus on positive things and orient yourself on the values that give you stability (e.g. family, social networks, faith).
    • Try to reflect on and regulate your thoughts (e.g. being productive can help us to escape the vicious circle of intruding thoughts and perseveration).
    • Relaxation exercises and meditation can help to calm the mind, body, and spirit. Be sure to include breaks in your daily routine.
    • Remind yourself: this collective crisis situation will be temporary.

Tips for interacting with children

Every child responds differently to stress and tension. They are not unlikely to display some type of unusual behaviors or reactions. They may feel uneasy or tired, nervous, irritable, aggressive, or fearful. Sleep-wake cycles may change. Some children regress and begin doing things that do not seem age-appropriate (baby talk, pant/bed wetting or soiling). Some children experience physical symptoms, like nausea, stomach discomfort, or headaches. It demands a great deal of the adults, and we must be particularly sensitive to carefully and accurately interpret the signals that children are giving.

  • Be there for your child. Remain open to their needs and maintain clear communication – children sense it when something is being kept from them.
  • If your child has to be schooled at home, this presents an extra challenge and is not easy, especially if you are also trying to accomplish work from home. Establish a structured daily schedule (don’t forget to add breaks). Children need to keep busy, but breaks and opportunities to retreat are equally important. A structured schedule provides stability and security!
  • Physical activities: taking walks around the block or through the woods.
  • Violence free communication: talk about anger before the situation escalates. There is always a reason why a child behaves the way they do. Remain understanding, patient, and more forgiving than usual. It is a challenge for the entire family.
  • If necessary, ask for help from appropriate psychological helplines.

Information for encouraging good eating behaviors in children with tube dependency

NoTube NetcoachingAccording to statements from various agencies Europe-wide, it will be several weeks more before we can begin to return to our familiar, former day-to-day lives. We will have to remain at home and continue to live according to these newly altered daily routines. This means that once we have restructured ourselves, we may have more time available than we previously had. The children used to have to go to daycare, preschool, school, therapies, etc., and adults to work. These are now cancelled, and that creates new opportunities.

  • Can your child swallow safely (without aspirating), then we suggest tube weaning be undertaken as soon as possible. We have been offering online tube weaning (Netcoaching) for a decade. Our success rate is over 90%
  • Costs for this treatment have been covered by health insurance companies on an individual basis.
  • Our many years of experience shows that tube weaning should be undertaken as soon as possible. The younger a child is, the easier it is to alter habitual behaviors and routines.
  • Challenging and stressful times, as well as changes in schedule and various anxieties can have an impact on appetite.
  • Enteral nutrition is accompanied by unwanted side effects:
    • Development of oral aversion, including refusal of any oral feeding
    • Frequent gagging and vomiting (ever 2nd child experiences this symptom)
    • Skin irritation, granulation tissue in the area of tube placement
    • Reduced quality of life for both the child and their family
    • 30% of long-term, tube fed children are not able to adequately thrive 
  • Netcoaching provides the following benefits:
    • Promotion of childhood development
    • Online coaching can begin immediately – no waiting time!
    • Your child remains at home in their familiar environment. Retraumatization from hospitalization is avoided. This results in a more efficient and effective therapy.
    • No extra costs for travel and accommodations
    • The support from NoTube is guaranteed for up to 6 months
    • The family receives the close, daily support of NoTube’s experts, even on weekends and holidays.

We have increased our helpline operating hours and are available for any questions you may have. We wish you and your family all the best and good health!

NoTube Helpline: German speaking families (+43 316 349950); English speaking families (+1 347 759 6060); French speaking families (+33 977 199132); help@notube.com