When you think of a newborn baby you think of soft, cotton white sleep-suits and cuddly elephant toys. The term “pediatric dysphagia” had never entered our mind, let alone did we understand the consequences it would have for our family.continue reading →
By Shumon Dhar, MD FACS (ABEA Position Statement Development Team Leader & NFOSD Medical Advisor)
Swallowing fluoroscopy, radiographic diagnostic modalities which include the video fluoroscopic swallowing study (VFSS) and esophagram, are widely considered the gold standard in the investigation of swallowing impairment. However, until recently, there was no uniformly accepted or comprehensive standard of practice in the United States. Consequently, there has been a wide array of protocols and interpretative strategies in use across the country.continue reading →
WHAT ARE NEXT STEPS WHEN THE CAUSE OF DYSPHAGIA HASN’T BEEN IDENTIFIED?
Dysphagia can be exhibited in many ways: coughing, choking, feeling like food is sticking, difficulty or pain with swallowing, bringing food back up, and others. Sometimes the dysphagia is accompanied by, or can cause, changes in overall health, like weight loss or changes in lung health. Sometimes the cause of these dysphagia symptoms is obvious, such as when a person has a neurological disease (e.g. Parkinson’s, dementia), has experienced a traumatic episode (e.g. stroke, head injury), or has head and neck cancer.
However, sometimes the symptoms of dysphagia cannot easily be tied to an obvious cause, and therefore no treatment plan can be developed. When that happens, it can be very frustrating and you may feel abandoned by the medical team. What steps can you take if you find yourself in that situation?
- Do some research on your own on the web to see if there is any information about swallowing symptoms similar to yours. Be sure you are reviewing information on reputable sites, such as the Mayo Clinic, medicinenet.com, WebMD, etc.
- Take good notes on what you read and list the site(s) where you found the information.
- Make note of anything you do, or any circumstances, that make the problem better or worse.
- Better or worse at certain times of the day or night?
- Relieved or made worse when eating or drinking certain foods?
- Better or worse when sitting, standing or lying down?
- Meet with a member of your medical team, share all of this information, and pose a series of questions:
- Review all of your medications (prescription and over-the-counter) with the medical professional and ask if any of those medications might be contributing to your symptoms.
- Be sure the medical professional is aware of any other medical problems you are having, or have had in the past. Some of these problems might not seem obviously related to your current symptoms, but relationships like that aren’t always clear. For example:
- ‘Indigestion’ might not seem related to a feeling of a lump in the throat, but the indigestion might be reflux and that feeling of a lump in the throat is likely related.
- Feeling strain when talking or having a persistent cough might not seem related to pain with swallowing, but it could be.
- Are there any other diagnostic tests that are indicated to gain more insight into the problem?
- What are those tests and what further information might be gained?
- Has the medical professional ever seen another person who presents with symptoms similar to yours?
- Is there another medical professional you should consult?
- If you are very anxious about your problem, discuss how anxiety can make certain symptoms worse.
- Seek out an assessment at a multi-disciplinary swallowing center. This might be called a Swallowing Center, Swallowing Clinic, Voice and Swallowing Center or Dysphagia Center. Because dysphagia symptoms may seem like they are occurring in one part of the body, but actually originate in another, a multi-disciplinary team that can be found at these centers is often indicated to take a holistic look at the presenting problem. These specialized centers are usually affiliated with large university systems and would ideally include professionals from specialties such as:
- Speech-Language Pathology (one with Board Certification in Swallowing). You can check the website of the American Board of Swallowing and Swallowing Disorders to find such a professional: https://www.swallowingdisorders.org/
If you need any assistance finding a specialist, you can reach out to the NFOSD at email@example.com. Our medical advisory board can help provide referral information for the most appropriate specialist.
Meet Mia. A three-and-a-half-year old little girl from a small town in Massachusetts. Severe dysphagia, microcephaly, laryngeal cleft, hip dysplasia, club feet, nystagmus, AND the ONLY person in the world missing the chromosome she is missing. Thriving day by day, and becoming an amazing independent little girl.continue reading →
Meet Caterine Kamber. Caterine’s daughter, Aurelie Micah-Pearl, has been on a pureed food diet her whole life after being on a nasal feeding tube for her first year of life. Having Down syndrome and being a very sensitive being, Caterine has looked at the very best foods to support her health. Aurelie is now 16 and thrives with good health and vibrant energy. Caterine and her family believe in organic, nutritious, gluten free, clean food. Years of research on how to utilize nutrition for optimum health have lead them to the creation of a convenient, pre-packaged organic pureed meal that has given us peace of mind, social freedom and great health.
Caterine’s passion for supporting her daughter’s health and nutrition led her to develop Ceres – Sunny Puree, a whole meal pureed food, all organic, gluten free, paleo-friendly and vegan. The purees are ready to eat in just minutes, simply by adding hot or cold water. Visit Caterine’s website to learn more:
Below are some videos that Caterine has created to share with the NFOSD community on how she is supporting her daughter and how she works to help others: