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The below was an email we received from SLP, Jiji. We received permission to post and edit for the purpose of clarity. Feel free to comment below if you have any expertise in this area or have suggestions or resources that could be of assistance.

“I am so interested in discovering objective measures for dysphagia management especially in the context of family centered care. In our acute rehab setting, families are part of the team of decision makers. When’s best to commit to a G-tube over Ng tube, when to introduce different textures and amounts as their children heal from acquired and/or traumatic brain injuries? I can’t seem to locate any good statistics about how much a body can aspirate before it begins impacting the healing of other injuries within the body and before it causes a primary problem such as pneumonia. Currently, I am concerned that kiddos re-learn to eat so they don’t lose interest in eating but I have to balance that with not wanting to create an aversion to swallowing if foods are introduced prematurely and creates coughing or choking. It is a constant balance. Also, we honor the whole child and the whole family and that nurturing children via food is a big piece in family’s emotional recovery.

I would sure appreciate any information, resources you have handy to be sent my way. Thanks much!”

JiJi Hubert, MS, CCC-SLP
Vanouver, BC

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8 COMMENTS

  1. I have a son with Bilateral optic nerve hypoplasia(legally blind)/ Septo optic dysplasia, vertical nystagmus, diabetes insipidus, adrenal insufficiency, growth hormone deficiency and dysphagia. He turned 2 July 31st. We almost almost went to a GTUBE. The constant choking and gagging and extreme vomiting was almost too much. He’s still on a bottle cause he can’t handle anything faster but he is starting to eat and vomit less. Before it was atleast once violently, now it’s more like 3 or 4 times a week. It is a traumatic, stressful and depressing thing to eat endure for any family. My son’s name is Link and is the youngest of 3. He was diagnosed with the dysphagia in July 2015 after modified Barium swallow study. He wasn’t even eating stage 2 baby food at this point and we had to use preemie bottle nipples. In this time he was going through kidney stress and failure due to the diabetes insipidus that was going undetected so he was thirsty. So thirsty, had too much Sodium in his blood. So he practiced constantly, drinking that is. He was sick alot from pneumonia that winter. He doing much better now but the balance is the key, even in a complex situation such as ours. Education makes such a difference.

    • Oh thank you for sharing your son Link’s story. I thought I would reply back as a mother of a child who had dysphagia as well. You can find my son’s story here on this site I think. It is truly a blessing to have a forum we can support each other and discuss our experiences. It can also be truly exhausting, scary and puzzling to search over and over for answers. At times the cause is never found. Other times we find out the cause and grieve for awhile. Whatever that step is, we turn to our child and make the best decision we can for them at that moment in time. You are not alone. I was not alone. Sometimes that can make a world of difference. I am delighted your son Link is doing better. I agree with you, education can make a marvelous difference.

      Best,

  2. Although l do not know the answer to this question, l would suggest asking your local/nearest pediatric pulmonologist. They may best be able to answer and/or guide you toward research articles on the topic.

  3. Hi Jiji!

    (Looking forward to seeing you soon in BC). This is a wonderful topic that we all found of interest as we serve pediatrics with feeding and swallowing disorders. It weighed on my mind so much, that when serving as ASHA SIG 13 editor, it was important to highlight in an article. Marni Simon and Dr. Melanie Sue Collins graciously agreed to the task and their article is entitled The Pediatric Lung and Aspiration. You can find it at:
    SIG 13 Perspectives on Swallowing and Swallowing Disorders (Dysphagia), December 2013, Vol. 22, 142-154. doi:10.1044/sasd22.4.142

    The article offers information on lung development, physiology, and evaluation of lung damage due to aspiration with consideration specifically for the pediatric population.

    This quote speaks to your question but reading the full article and exploring the references for further details may be of benefit.

    ‘When deliberating the overall impact of damage to the lungs of a pediatric patient versus an adult patient, the significance of possible irreversible lung damage is different. In an adult, the damage that occurs may not have a large impact on their lung capacities for their remaining life, whereas in children, the impact is much greater. In an adult, the lung is mature and a patient has already reached and passed their maximum pulmonary function. Starting in their late 20’s, normal, healthy, non-smoking adults experience an annual decline in FEV1 of 20 mL per year (Wang et al., 1993; Wilmott et al., 2012). Any decline in lung function in a stage prior to complete maturation causes a failure to reach your maximal lung growth, thus further exacerbating the natural decline seen in adulthood and causing significant morbidity.’ (Simon & Collins 2013)

    The article reminds us to look at the whole dynamic picture and consider feeding and swallowing development even in the presence of a dysphagia. It encourages us to find a balance of these factors to consider a feeding plan allowing for optimal exposure with oral trials along with minimizing aspiration risk.

    Here are some articles that may be helpful:
    Special Considerations for the Pediatric Population Relating to a Swallow Screen Versus Clinical Swallow or Instrumental Evaluation
    SIG 13 Perspectives on Swallowing and Swallowing Disorders (Dysphagia), February 2015, Vol. 24, 26-33. doi:10.1044/sasd24.1.26

    A Retrospective Examination of Prandial Aspiration in Preterm Infants
    SIG 13 Perspectives on Swallowing and Swallowing Disorders (Dysphagia), October 2015, Vol. 24, 162-174. doi:10.1044/sasd24.4.162

    I hope this is helpful to you. I know my colleagues will have additional valuable insight to share as well.

    Warm regards,

    Donna Edwards, MA CCC-SLP, BCS-S, ASHA-F
    Board Certified Specialist in Swallowing and Swallowing Disorders

    • Thank you so much for such an insightful response. I look forward to meeting you in October. I still have much to learn. The quote you copied surprised me – The fact that we could be creating or preventing life long lung problems – wasn’t even on my radar. I was only thinking of emotional/psychological aversion to eating and drinking, risk of immediate health issues, but not of diminishing a kiddo’s ability to maximum lung capacity.
      Thanks, again –
      JiJi

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