Does My Child Need Speech Therapy for Pompe Disease?

By Danielle Bradshaw from In The Cloud Copy

Pompe disease is the lack of a specific protein within the body that helps break down glycogen – a complex sugar that provides energy. The inability to break down glycogen can lead to muscle damage and weakness. It’s an inherited genetic disorder which can only occur when a person has the flawed genes passed down to them from both parents.

Because Pompe disease – especially the infantile-onset variant – can cause issues like an enlarged tongue, weak face muscles, respiratory complications, problems swallowing, and loss of motor control, their speech can often sound slurred and it can be hard for them to communicate verbally. Speech therapy can help patients better articulate themselves. If you’re thinking about speech therapy for your child, here’s a step by step guide on how to assess whether your child may need therapy and how to begin the process.

Have Your Child’s Speech Evaluated

If you notice any problems with your child’s breathing or speech keep a close eye on their linguistic development and communicate with a pediatrician. The doctor can then refer them to a speech-language pathologist (SLP). It’s best to catch any potential speech difficulties early as children are more likely to benefit from this therapy at a young age – less than five years old. If you feel confident enough to do so, you can have your child’s speech and language evaluated by your own recommendation.

Discuss Your Child’s Speech Abilities with an SLP

When you have consulted/been referred to an SLP, they will typically provide you with a case history form or questionnaire that’ll ask you for info about the medical history of the child and about their current language and speech capacity. The form will ask what words your child commonly pronounces, the clarity of the words, what makes your child communicate, and their responses to you. If your child has trouble breathing or swallowing, be sure to tell the therapist. Having a recording (audio or video) of how your child communicates would be very helpful.

Address Whatever Doubts You May Have About Therapy

Speech therapy is customized for each child and their needs, so whatever doubts you may have should be addressed before the evaluation even starts. A few things that you may want to ask the therapist are:

  • Can I be with my child during the therapy?
  • With whom will the child be working and are they a certified professional?
  • How long will the therapy be necessary and how long does a session take?
  • How will the therapy be organized and what does it consist of?
  • Is it possible to conduct sessions at home if it makes my child more comfortable?
  • How do you measure progress and can I be informed?
  • Is the therapy covered by insurance?

The Evaluation

The evaluation can last for long as 90 minutes and will consist of your child being tested on their:

  • Fluency
  • Voice characteristics
  • Receptive and expressive communication
  • Augmentative and alternative communication (AAC -the way people express ideas and their feelings without speaking)
  • Interaction with objects and people

After the assessment, you’ll be given information about what the SLP tested your child for and how they performed in each field. From there, you’ll be given further consultation on what to do next – what to do at home, how long improvement may take, and what support resources there are for you and your child. It’s important to keep in mind that no two therapy sessions are the same and that you should not compare your child’s progress to another child’s. Be absolutely certain to stick to the SLP’s provided plan and tell them if any new developments or problems arise.


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