Intellectual and 
developmental disabilities

Dehydration


Dehydration is defined as the lack of sufficient body water and fluids.¹⁷ Dehydration may occur due to inadequate intake of fluids or loss of fluids. This is a common problem experienced by patients with IDD. There is an increased risk for dehydration due to the inherent intellectual and developmental disabilities that are present among this vulnerable population. Dehydration may be mild, moderate, or severe.¹⁷ Symptoms of dehydration can include hypotension, dry mouth, decreased skin turgor, delayed capillary refill, tachycardia, seizures, and signs of circulatory or cardiovascular collapse. Signs of circulatory or cardiovascular collapse include low blood pressure, shallow breathing, weak pulse, clammy skin, cyanosis, low urine output, and unconsciousness. 


Causes. Patients with IDD are prone to experiencing loss of appetite, nausea and vomiting, poor oral health, or insufficient mechanical means to chew food, all of which may lead to dehydration. Loss of fluids can occur through excessive sweating, fever, vomiting, or diarrhea or loss due to difficulty swallowing. These are also unique situations experienced by patients with IDD that may contribute to dehydration. It could be as simple as the patients’ inability to express that they are thirsty or to walk to get a glass of water. Caregivers should be aware of their patients’ needs for adequate fluid intake. 


Potential Complications. The potential complications of dehydration can lead to life-threatening conditions, if not recognized and treated in a timely manner. Dehydration that is mild to moderate can cause alterations in electrolytes. This can happen more quickly among individuals with IDD due to their already vulnerable physiologic state. If mild signs or symptoms are left untreated, dehydration among patients with IDD can become a life-threatening condition very quickly.


Diagnostics. Testing that can be ordered to determine the presence and extent of dehydration includes a chemistry profile and a urinalysis. Blood tests such as serum creatinine level, BUN, or a CBC can be very helpful in the diagnosis of dehydration. Dehydration may cause an elevated sodium level, a decreased potassium level, and an increase or decrease in bicarbonate level and elevated BUN. A urinalysis may reveal increased urine-specific gravity. Dehydration may also cause an elevated serum creatinine level and elevated BUN level.


Case study A 34-year-old male with IDD presents to your office with a staff person who is his caregiver at the residential community home where he lives with two other people. The staff member says that the patient has not eaten much during the past three days and that this morning when he woke up he felt hot all over and was making a funny noise when he breathes. His vital signs were: blood pressure, 124/82 mm Hg; heart rate, 96 beats per minute; respiratory rate, 24 breaths per minute; and axillary temperature, 100.8° F. His O2 sat on room air is 96%. The chest x-ray, which is the test that you should order first, shows a right lower-lobe infiltrate. Start him on antibiotics. Other questions that may need to be answered to help determine the etiology of the pneumonia include the following: Was there any vomiting episode? When was his last bowel movement? Does he put things in his mouth that he shouldn’t? A vomiting episode could indicate that there was an aspiration episode that caused the pneumonia, which might change your treatment regimen. If the patient has not had a bowel movement in a few days, constipation could be the cause of the vomiting, which may have led to the pneumonia. Further evaluation with a digital rectal exam and possibly a kidneys, ureters, bladder (KUB) x-ray would be warranted. If a fecal impaction or a considerable amount of bowel feces is noted on a KUB, proper cleansing of the bowel may prevent another vomiting episode. Asking about a PICA could also help identify a possible cause of pneumonia or decreased appetite and may warrant a chest x-ray or KUB to look for an aspirated or ingested foreign body that could cause pneumonia or gastrointestinal upset.

Treatment. Treatment for dehydration includes fluid and electrolyte replacement. For mild dehydration, drinking small amounts of fluids occasionally or consuming electrolyte solutions may be beneficial in preventing further dehydration. For moderate to severe dehydration, intravenous fluids may be needed to improve hydration. Severe dehydration that leads to signs and symptoms of circulatory collapse may require hospitalization to stabilize the individual with IDD.


Prevention. In patients with IDD, prevention of dehydration is key to avoiding potentially life-threatening conditions. Understanding the way persons with IDD may communicate their needs including thirst is important. Some patients may not be able to communicate their thirst at all. A dietary consultation can help determine their fluid and nutritional needs. In those who have alternate feeding routes such as a gastrostomy tube, it is important that they are given adequate fluids. Conditions such as fever, elevated blood glucose, diarrhea, and vomiting may cause increased loss of fluids, and more fluids may be needed when these conditions are present. 


Seizures


A seizure is defined as an involuntary alteration in behavior or physical findings that is present after abnormal electrical brain activity.¹⁸ Seizures are fairly common among patients with IDD and can be severe and fatal. Seizures can also be very challenging to manage due to the variations in presentation among individuals with IDD. Patients with seizures may present with generalized convulsions, loss of consciousness, body stiffness and jerking, and deep sleeping following the seizure activity. Patients with seizures may also present with less obvious symptoms while maintaining consciousness such as lip smacking, fidgeting, or other repetitive, coordinated motions that are involuntary. 


Causes. Besides congenital issues, seizures among people with IDD can be caused by a variety of conditions that may be exacerbated by anything that could lead to a change in a patient’s biologic pattern, such as the presence of an infection, an impaction due to constipation, medication noncompliance, or shunt malfunctioning. Seizures may also be caused by a head injury, a stroke, hypoglycemia, or an electrolyte imbalance. All of these should be taken into consideration when attempting to determine the cause and the appropriate treatment of seizures in patients with IDD.


Potential Complications. The potential complications of seizures are multiple. Bodily injury may occur due to the involuntary spasms and jerking of the body. Loss of consciousness can lead to falls and the potential for head injuries. Some of the most serious complications of seizures include permanent neurologic damage and death.


Diagnostics. Following an initial seizure, diagnostics to consider obtaining include EEG, head CT or MRI, and blood work such as a stat glucose to rule out hypoglycemia as a cause. If a person has a known seizure disorder that has previously been evaluated, repeat EEG or brain imaging studies are not usually necessary. If the individual has a change in his or her seizure pattern, consideration should be given to identifying a treatable cause such as constipation, infection, medication noncompliance, hypoglycemia, a shunt malfunction, or other issue. History that can be given by witnesses regarding details pertaining to the type of seizure activity may be extremely beneficial in diagnosing and treating seizures, and keeping an accurate log of seizure activity is very valuable to the treating clinician.


Treatment. Treatment should begin by ruling out precipitating factors first. Addressing precipitating factors such as constipation, infection, medication noncompliance, or hypoglycemia may be all that is needed. AEDs may be considered if underlying precipitating factors have been ruled out. General considerations include maximizing an AED’s dosage and level before declaring the drug to be a failure. It is also important to remember slow induction and tapering of all AEDs. Once treatment has failed on two to three AEDs, consideration may be given to other modalities such as a vagal nerve stimulator. Consider early referral to a neurologist who specializes in seizure treatment and management.


Prevention. Although most seizure disorders cannot be truly prevented, managing constipation, early treatment of infections, and addressing medication compliance issues may be very helpful in improving the quality of life for patients with IDD who have seizure disorders. 


Conclusion


Treatment and management of health care needs among patients with IDD can be very challenging in the primary care setting. Individuals with IDD have unique needs that are not always consistent with those of the general population. Therefore, the presentation of symptoms and management of medical conditions often differ from the usual approaches and require astute clinical skills to diagnose and manage them. As more patients with IDD begin to slowly migrate into community settings, it is vital that primary care clinicians are familiar with commonly presenting features and evidence-based treatment guidelines pertaining to this vulnerable population. It is also important for community-based primary care clinicians to have available access to health care resources particular to patients with IDD to assist with the diagnosis, treatment, and management of health care issues faced by these individuals. This will serve to improve the quality and safety of health care services provided to everyone, including those with IDD.


Mary Atkinson Smith, DNP, FNP-BC, is a board-certified family nurse practitioner at the University of Mississippi Medical Center for TeleHealth in Jackson, first assistant in surgery and board-certified orthopedic nurse practitioner at the Starkville Orthopedic Clinic in Starkville, and an Assistant Professor and Assistant Program Director for Online Programs at South University College of Nursing and Public Health in Savannah, Georgia. 

Craig L. Escude, MD, is the Clinical Director of the Hudspeth Regional Center and the Developmental Evaluation, Training, and Educational Consultative Team (DETECT) of Mississippi (DETECTms.com), affiliated with the Mississippi Department of Mental Health, in Whitfield.


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