Speech Therapy for Pompe Disease: Does My Child Need It?

Speech Therapy for Pompe Disease: Does My Child Need It?
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Speech therapy is commonly used to help Pompe disease patients, especially those diagnosed with the infantile-onset form of the disease. These patients show symptoms such as difficulty breathing, swallowing, and speech articulation due to weakened facial muscles, an enlarged tongue with poor motor control, and respiratory insufficiency.

Here are a few points to consider as you decide whether speech therapy would be beneficial for your child.

Speech evaluation

Keep track of your child’s developmental milestones and note if there are  delays, such as problems in understanding speech and language, or difficulties swallowing. Discuss these with your doctor, who may then refer your child to a speech-language pathologist (SLP). You also can self-refer your child for a speech and language evaluation.

Children younger than 5 tend to show better progress with speech therapy than those who are older. So, it is best to start speech therapy as soon as you notice speech, language, breathing, or swallowing difficulties.

Your child’s speech and language abilities

An SLP often will give you a questionnaire or a case history form that asks questions about your child’s medical history. You may be asked to rate your child’s current speech and language capabilities. In the form, list things such as the words your child pronounces frequently and how clear they are, common scenarios that prompt your child to communicate, and how they respond to you.

If your child has swallowing or breathing problems, make sure to mention that to the therapist. If possible, share with the SLP an audio or video recording of your child’s communication activity.

Your doubts

Speech therapy sessions are tailored for every individual child, so it is important to address any doubts before the evaluation session begins. Some questions you may need to clarify include:

  • How will the initial assessment proceed?
  • Who will work with my child and are they certified?
  • How will the therapy be structured?
  • How frequently will therapy be required and how long will each session last?
  • Do I get to be with my child during the session?
  • Can the sessions be conducted at home?
  • How is progress measured and can I have input?
  • Are the therapist’s services covered by insurance?

The evaluation

The SLP’s initial evaluation can take up to 90 minutes. During the process, your child will be assessed for receptive communication, expressive communication, fluency, pragmatic skills, voice characteristics, augmentative and alternative communication, and how her or she interacts with people and objects.

You will be presented information about the parameters that were assessed and your child’s performance in each. You also will be advised about the next steps to be taken, strategies to be followed at home, support resources, and a projected timeline for improvement.

The therapy plan

After the initial evaluation, plan for the therapy sessions as advised. Each child is unique and the speech therapy is devised accordingly. That’s why it is important you do not compare your child’s progress with that of other children. Make sure you adhere to the suggested plan as much as possible and inform the SLP of any deviations or developments.

 

Last updated: Feb. 13, 2020

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Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.

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