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Seeking Medical Second Opinion for your child’s neurology condition? Here are 5 first steps you can take.

By: Alaap Anklesaria, MS HCM

Stroke is something that not many parents think about. However, according to the American Stroke Association the risk of stroke among children is greatest in the first year of life. Stroke also occurs in about one of every 3,500 live births. The risk of stroke from birth through age 19 is nearly 5 per 100,000 children per year. In fact, stroke is one of the top 10 causes of death for children between the ages of 1 and 19.

The American Stroke Association notes that the risk factors of stroke for children are much different than those of adults. About half of the children presenting with a stroke had a previously identified risk factor or underlying yet to be diagnosed disease. For example, sickle cell disease and congenital or acquired heart disease are the most common underlying risk factors.

Medical Second Opinion: According to the American Stroke Association, delayed or misdiagnosis of stroke in children is still common. The incidence of stroke in US children ages 0-15 is estimated at 6.4 out of 100,000. Nevertheless, the incidence of stroke in children has been stable over the last 10 years, although at least one study found that the incident rate in U.S. children may be two to four times higher than previously published estimates. Between 20% to 40% of children die after a stroke and boys are 1.3 higher risk than girls according to American Stroke Association.

Although not often necessary, getting a second opinion on your child’s diagnosis or treatment plan is often a good idea. American Stroke Association notes that some children who have suffered a stroke may appear quite normal but later have developmental delay. A second opinion generally brings clarity and peace of mind to parents since diagnosing children is often generally challenging.

Dr. Lyons, Director of the Division of Neurological Infections and Inflammatory Diseases at Brigham and Women’s Hospital in Boston notes that “strokes among children can be challenging to diagnose the causes. Diagnosis requires careful clinical examination and brain imaging.” American Stroke Association also notes that because the initial sign of a problem is not often a stroke, preventing childhood stroke can be difficult.

For parents seeking a second medical opinion, Dr. Lyons outlines five simple steps they can take:

  • Step 1: Discuss with your pediatrician if you think there would be value in seeking a medical second opinion.
  • Step 2: Find a specialist or sub-specialist you would like to get a second opinion from. Again your pediatrician might have some specialists in mind. Other parents talk to their friends, families, or contact local chapters of a medical society for suggestions of specialists. Many second opinions can offer a different prospective and offer treatment options that are not available at your current provider. For a second opinion, the required time might vary from case to case.
  • Step 3: Find out the cost of the medical second opinion service and if your insurance plan covers second opinion services. FSA (flex spending accounts) and HSA (health savings accounts) likely may also provide coverage. Also lastly, while less common, check with your employer if you have any subsidies for child health expenses. Most health insurance plans do not cover costs for medical second opinion services and as a result you may have to pay out of pocket.
  • Step 4: Review the checklist of documentation (i.e. medical records) you need to send for medical second opinion. For neurology or any other specialty, to help the specialist give an accurate opinion all the laboratory results, pertinent surgery results and current medication and dosage information would also be required. Find out how to send these documents to the specialists. There are HIPAA requirements for transmitting and storing patient data to keep in mind as well.
  • Step 5: After you get a second opinion expert report, seek the guidance of your pediatrician to interpret the overall report including medical terminology in the report as well as clinical actionability. The second opinion will likely guide the next steps and determine the best next steps including, if necessary, any additional tests or treatment for your child.

Alaap Anklesaria graduated from Johns Hopkins University and is an intern with Xpertcare, an online medical second opinion service for pediatric patients.