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Nutrition and Hydranencephaly or other conditions

Posted Oct 02 2009 3:07pm
I know the basics of proper nutrition and your body, and my kids' bodies...but apparently it's a total different set of basics for a special needs child. Makes sense, Brayden isn't mobile so he probably doesn't need to consume nearly the calories of a "typical" child or he'll have a much harder time ever becoming mobile. When I began to research this idea, I was bombarded with all kinds of theories...from "children with neurological disorders are generally allergic to everything so have to be on a special diet" to "it is so difficult for children with disorders to get the nutrition they need orally, so a feeding tube should be placed for ease". WHAT?? Not in my world...

Of the things I've looked into, I'll delve into the few things I'm actually interested in learning more about from our Special Needs Nutrition Specialist, once we hear from her. I didn't realize there was such a thing, but was I ever glad to find out that she exists! And if you're reading, and you're the parent of a special needs child who has not been in touch with a registered dietitian /nutritionist in your area...know that there is one available:

"The Health Care Program for Children with Special Needs(HCP)is a federal program operating through county health departments and serving individuals from birth to age 21. A health department staff dietitian has been incorporated into the program to provide direct client care through home visits and/or clinic visits to offer assessment and recommendations. The information obtained from these visits is typically shared with the primary care provider, parents, therapist, schools and other providers involved to encourage a team approach for children who are often working with many health care personnel. A benefit to being associated with the county health department is thatHCP-eligible clients are often discovered through the Special Supplemental Nutrition Program for Women, Infants and Children (WIC) where they may be given an application to fill out to begin the registration process. A second benefit to this approach to nutrition care is that health care personnel can request that theHCPdietitian perform a home visitation to follow up on recommendations. By offering this service in the home the client receives care in the natural setting. Finally, the dietitian helps educate theHCPteam on nutrition and diet issues through monthly meetings. Incorporating the dietitian into theHCPteam has been beneficial for the care of special needs children through outreach, home visitation and education of the team."

APediatric ION (Individual Optimal Nutrition)profile is the most intriguing to me. The test measures essential minerals, vitamins, fatty acids, and amino acids, among other things and recommends supplements based on these test results. It measures over a hundred aspects of your child's biochemistry and your doctor can then recommend a supplemental regimen and diet accordingly. Costly test, but sounds well worth the money to ensure your special needs child is consuming a diet full of the nutrition they need for their body to be performing at optimum levels.

I also found a GREAT online resource, that can also be purchased in copy format (but why if you can download it for free?). The publication title is: Nutritional Interventions for Children with Special Needs and can be found at theChildren forSpecial Health Care Needs of Washington State website. Since it's 362 pages long, and I've read every bit of it, I'll just highlight some of it's contents below.

About initial screening and the importance of this in children with special needs:

Nutrition disorders and compromised nutritional status are common among children with special health care needs. As many as 40% of infants and children with special health care needs are at nutritional risk. A survey of children from birth to age three years with developmental delays in early intervention programs found 70-90% had one or more nutrition risk indicators. Indicators of nutritional risk include altered growth, increased or decreased energy needs, medication-nutrient interactions, metabolic disorders, impaired ability to utilize nutrients, poor feeding skills, and partial or total dependence onenteralor parenteral nutrition. A well-nourished child
has increased alertness and stamina to participate in therapies, educational activities, and social interactions and benefits from fewer illnesses and improved coping skills. Improved nutritional status and feeding skills may increase the level of independence the child is able to achieve. It can improve the child’s perception of self and the caregivers’ perceptions of their abilities to meet the child’s needs.
Screening and assessment of nutritional status are integral components of pediatric health care. Nutrition screening is a preliminary survey of factors associated with nutritional status. The purpose of nutrition screening is to identify infants and children who appear to have nutrition problems that require further investigation or who are at-risk for developing a nutrition problem. Nutrition screening should be routinely performed for all children with special health care needs. Screening is general in nature, while assessment is a more comprehensive and detailed examination of all factors that may affect nutritional status. The nutrition assessment provides essential information for developing achievable nutrition intervention care plans.

That's sounds common sense enough to me, but I didn't realize all of the people that would be and should be involved in the nutrition of our children:

Optimal nutrition care involves consultation and care coordination with professionals from a variety of disciplines. The interdisciplinary team may consist of the child and family, PCP, occupational therapist (OT), physical therapist (PT), speech language pathologist/therapist (SLP), RD, behavior specialist, social worker,PHN, and home health care providers. Other community agencies such as schools, early intervention programs, hospitals, specialty clinics, the Special Supplemental Nutrition Program for Women, Infants and Children (WIC), Head Start, day care, Division of Developmental Disabilities, and Child Protective Services may also be involved.
The team approach consists of professionals working in a family-centered partnership to coordinate services and provide continuity of care for the child and family. With input from team members, a nutrition care plan is developed. The nutrition care plan should be culturally- sensitive and have a preventive emphasis. Nutrition care goals and objectives (or outcomes) can become a part of the child's Individual Education Plan (IEP) or Individualized Family Service Plan (IFSP). Reassessment should occur at regular intervals to monitor effectiveness of the nutrition care plan, modify nutrition goals and objectives, and evaluate how the care plan is meeting the needs of the child and family.

The publication also contains a chart listing all of the areas your special needs child should be screened in, what each risk factor indicates and which risk factors indicate a need for intervention...very informative! It goes on to describe the anthropometrics, which is the comparative measurements of the human body, the techniques used to take those measurements and what those measurements can indicate in terms of nutrition.

Brayden has been fortunate enough to avoid most medications thus far, despite a small stint on Phenobarbitol to control seizure activity and Zantac for possible reflux. Medications can also affect nutrient absorption or cause other risks to a child's diet:

Medications and nutrients are known to interact, sometimes with detrimental effects. Medications can affect nutritional status in the following ways:
• altering the absorption, metabolism, and/or excretion of specific
• causing gastrointestinal disturbances and/or anorexia, thereby
decreasing overall nutrient intake
• increasing appetite which can result in obesity

Additionally, specific foods and nutrients are known to interfere with the action of certain medications by altering the absorption or metabolism of the medication. Children with special health care needs are at risk for medication-nutrient interactions, especially when medications are usedlong term, multiple medications are prescribed, and nutrient intake is marginal. Other issues to consider include interactions between medications and vitamin and mineral supplements and the timing of medication administration related to meals and snacks.

The publication goes on to describe 10 medications that affect the absorption of nutrients or cause interactive problems within the body:
1. Anticonvulsants
2. Laxatives
3. Stimulants
4. Diuretics
5. Corticosteroids
6. Antidepressants
7. Antibiotics
8. Anti- inflammatories
9. Antispasmodics
10. Anti- gastroesophagel Reflux Medications
If your child takes any of these, please read thefull publicationto obtain the questions to ask your doctor or nutritionist in regards to reactions these pose on your child's body.

Constipation and diarrhea are also common problems in special needs children, and if you're like me you want to avoid using more medications to prevent this. Diet is a huge factor in achieving relief without medication. Many things cause constipation such as abnormal anatomy or neurological function, abnormal muscle tone, excessive fluid losses, inadequate fluid intake, decreased activity, lack of routine toileting abilities, inadequate fiber intake, dairy allergy, behavioral withholding, inability to communicate need and various medications. Diarrhea is also caused by many things and can become severe enough, in some cases, to even cause death. Fortunately proper nutrition and hydration can prevent those serious cases...

Brayden has been intervened for feeding issues on a couple of occasions, but fortunately the problems have been resolved without operative procedures. Oral-Motor Feeding Problems are a very common occurrence as well in special needs children so I'll post more information in regards to these problems.

Children withneurodevelopmentaldisorders or developmental delays frequently have oral-motor and swallowing problems. These feeding difficulties influence the child’s ability to consume a nutritious intake in a variety of ways. The child may have inefficient or abnormal oral-motor
patterns, making ingestion slow or labored. Oral-motor difficulties may limit the types of foods the child can eat. In addition, swallowing dysfunction may severely restrict the type of food textures that are safe for the child to eat.
Most frequently, swallowing dysfunction affects the child’s ability to drink liquids. This may not only compromise the child’s overall nutrition but also his hydration status. Some factors associated with oral-motor and feeding problems include:
• abnormalities in muscle tone and delays in motor development
• oral-facial defects that interfere with feeding (such as cleft palate)
• delayed oral motor development or abnormal oral motor patterns (eg,
a tonic bite reflex)
• hypersensitive responses to touch and/or temperature in and around
the mouth
• dental problems such as severe dental cavities or acquired
malalignmentof the jaws and teeth
• inability to properly coordinate feeding, swallowing, and breathing due
to chronic medical conditions or central nervous system damage
• related medical conditions such asgastroesophagealreflux that may
affect willingness to eat
• prolonged length of feeding sessions which tax both the child and the
If feeding difficulties such as these are observed, a thorough feeding evaluation is indicated. A pediatric occupational, speech, or physical therapist who is skilled in feeding disorders can perform this type of evaluation.
Complete evaluation of oral-motor and swallowing deficits in children withneurodevelopmentdisorders involves assessment of a wide range of factors beyond assessment of the level of oral-motor control. These include assessment of:
• basic postural control and level of motor development as it relates to feeding
• tactile sensitivity in the oral area and throughout the body
• the child’s ability to achieve and maintain an appropriate behavior and state of alertness for feeding
• the stability of the child’s physiologic functions to support feeding (eg, stability of heart rate or respiratory rate)
• coordination of feeding, swallowing, and breathing
• swallowing function usingvideoflouroscopicswallowing study (VFSS),
if indicated
Difficulties in parent-child interaction may also be associated with oral-motor feeding problems. It is often difficult to differentiate between physical, behavioral, and interactional problems. Thus, it is necessary to consider all three when evaluating a child for oral-motor feeding problems.
In addition, related medical problems such as gastroesophageal reflux (GER) may influence the child’s feeding ability. If the child associates eating with the pain that often accompanies GER, the child may be resistant to feeding and food intake may decline dramatically. If gastroesophageal reflux is suspected, further evaluation by the child’s primary physician or a
gastroenterologist is indicated.
Since most feeding problems have multiple underlying factors that contribute to the overall nutritional and feeding deficits, a team approach is the most effective method to thoroughly assess and intervene with the oral-motor feeding problems. In addition to the occupational, speech, or physical therapist, this team should include a registered dietitian (RD), a pediatrician,
or other primary health care provider and the caregivers. The team may often also include a nurse or social worker to address the psychosocial issues that frequently occur concurrently with the feeding problem.
Appropriate interventions can significantly improve the child's basic feeding skill as well as improve the ease of feeding for the caregiver. Mealtimes can become more satisfying for the child and family promoting better growth and nutrition. Intervention may include:
• proper positioning during feeding
• specific therapeutic activities to improve basic oral motor skills
• specific food types or textures to support the child's level of oral motor control and swallowing function while ensuring adequate nutrient intake
• adapted feeding utensils
• specialized feeding techniques
If the child is still unable to consume an adequate intake and/or it is unsafe for the child to eat, partial or full nutrition may need to be given via a nasogastric or gastrostomy tube.

Theaforementionedpublication goes on to discuss parenteral nutrition, or tube feeding, which we have been fortunate enough to have avoided thus far, how to follow nutritional guidelines within a school system and the laws supporting you during those dealings, and finally my biggest concern in regards to Brayden, excessive weight gain and obesity.

Overweight and obesity in children with disabilities may impair their mobility, balance and ability to progress in gross motor skills. As a consequence, the child’s energy needs may be further reduced. Overweight children who are not ambulatory also require greater physical effort from family and other caregivers in their daily activities.
Children who have short stature and/or limited mobility are more prone to excessive weight gain than their typically developing peers. For nonambulatory children, energy needs are 25 to 50% lower than those of ambulatory children. Additional factors that may contribute to obesity
include: a family history of obesity; family eating patterns that result in excess energy intake; frequent snacking or lack of structured meals and snacks; use of food as a bribe or reward; and limited opportunities for physical activity.

The least of my worries, fortunately now, is a failure to thrive...or gain weight appopriately or grow in proportionate levels along the growth curve of children typically up to the age of 3. Some causes of this can be related to environment or bodily malfunctions, especially with neurological or cardiologic conditions. Assessments can be made to determine medical contributors, feeding situation, nutritional status and psychosocial contributors and the problem resolved. Premature babies have a completely different set of nutrional guidelines and are not always associated in the category as "failure to thrive" although they are often times much smaller the first couple years of life.

The publication goes on to describe nutritional needs in children with specific conditions such as lung disease, cystic fibrosis, heart disease, chronic renal failure, short bowel syndrome, various metabolic disorders, seizure disorders (with the aid of the ketogenic diet which I outlined in a previous post a bit) and HIV/AIDS. It then follows up with detailed information in regards to tube feeding, ending with the various conditions oftentimes needing nutritional interventions with the descriptions of these conditions and guidelines of various nutritional additives and special formula consumption along with resources of further information through governement agencies and food/pharmaceutical companies.

With all of this information, I'm full of questions to ask our new nutritionist and eager to learn effective ways to help Brayden achieve his full potential through a nutrional diet adapted for his needs. I also hope to learn ways to help him eat a more varied diet, and eventually even independently doing so.

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