Conference Notes - Parent Roundtable Discussion

Posted by on September 22, 2013 at 11:00 AM

On Saturday afternoon we had a roundtable discussion. We received great advice and ideas from the parents and other people experienced with the day to day care of LNS patients.

The main areas that we discussed were respite care, restraints, behavior, sleeping and therapy. 

Respite Care and Home Health Care

In the area of respite care and home health needs Michelle Lucas shared her wisdom and insight on what resources are provided by the state or local services. You can contact Michelle at or 319-961-0398. All of the moms that do use these services could not encourage enough the support and care they have received. Home health care is available in every state. You are able to hire or to elect someone you know as a home healt aid.

Each state has it's own rules and regulations about the care available. You will find resources under such things as ill and in need children or under Intelectual Disability which allows medicaid to assist you and your child. You are welcome to contact Michelle with any questions. 

Self-Protective Devices

Next, we discussed restraints and the first thing mentioned was to not call them restraints, but to call them self-protective devices!! This is especially important when you discuss your child's care with the state health representative. LNS is very misunderstood and it is up to the parent to educate other people about what is necessary.

We had some fantastic ideas from some of the moms attending.

One mom shared that her son has difficulty with his head dropping or banging. To help with this tendancy, he wears a hat! He simply wears a baseball cap with a small strap attached to his wheelchair. She loops the strap through the small hole in the back of his baseball cap and attached the other end to the wheelchair post behind his headrest.

Another mom showed and explained a number of devices that her son uses. He was struggling with his knee braces as he was able to hurt himself on the standard knee guards. She was able to adapt the rib holders from a different wheelchair into knee guards. She also invented beautiful wrist and ankle cuffs for her son. They are small soft fabric wrapped in cloth belt loops and snapped in to his wheel chair. She also invented straps which attach to the bed. They allow her son to move in bed, but not to roll or thrash in any way that could allow him to get hurt.

These were some terrific ideas and I will be posting pictures as soon as possible to help anyone get their own thing started.


LNS has many behaviorial aspects that are uncommon and inexplicable to the 'normal' way of thinking. The parents had advice to share about helping children with some of the behaviors.

1. Not showing your emotions and frustrations is very important when caring for LNS patients. It is very difficult not to show your emotions, but it is one of the most important things to remember. LNS kids react very poorly to negative emotions. It creates anxiety in them and the anxiety feeds the self-injuring behavior (SIB).

2. Pillows can be used as a way to hurt themselved, specifically to suffocate.

3. Screaming and yelling are common. They will do this until you are gone, but will eventually settle after you have left.

4. Be careful what you say about them. They are very perceptive and will come up with their own ideas about a topic. For instance, one mom said that she was taking her son for treatments in California. The son came up with the idea that the treatment would heal him. This situation caused great anxiety and distress for the whole family. The son became angry with his disease and he had truly believed that he would be cured.


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1 Comment

Reply Research Doctor
6:08 PM on February 11, 2016 
My team and I believe that our experience and research strongly suggests that a particular medication never tried in LND (but used in several other diseases to successfully treat many of the symptoms found in LND) should significantly improve the suffering and quality of life of children with LND. This is a safe medication that is well tolerated and should work quickly. Please email to further discuss or, after emailing, will provide you with a phone number to call.
Looking forward to helping. Have had several email exchanges with Dr. Nyhan himself.
regards to all