by Ellen Ladau    August 19, 2016

As a person with LS who is also a mom of someone with LS, you would think I was an expert. Hardly!  There are many things I wish I had done differently because I didn’t know any better or things that I knew better but still did not follow through on.  

I think my biggest issue has been one that is so familiar to so many, with or without LS- my weight.  If I had a nickel for every time my childhood orthopedist told me to watch my weight, I would be quite rich today.  Being overweight is not good for anyone’s joints- especially people with a predominantly joint disorder.  To be fair, some people’s weight  is largely determined by genetic factors but environment certainly plays a big role.  A pantry stocked with cookies and chips is definitely not helpful.  Also, inability to exercise effectively is sometimes a real problem. In my childhood, not being able to ride a bicycle was not only socially isolating but also more opportunity to sit around watching TV.  And, no doubt, this led to emotional eating as well. So my best advice, especially to parents of little ones with LS, is to get them as involved in as many extracurricular activities as possible.  Today, there are more than ever inclusive activities for children with disabilities such as accessible playgrounds and dance classes for mobility impaired kids,  Just be be sure to take appropriate safety precautions, especially if spinal defects are present.  When my daughter was younger, she wanted to do therapeutic horseback riding. A doctor’s consent was required by the program and the orthopedist refused citing concerns about a fall.  One activity that most orthopedists would likely approve of is swimming.  Water based activity is low impact on the joints and is great for building muscle strength: it is also fun for kids of all ages. If frequent ear infections are a concern, consult with an audiologist for custom-fit swim molds to help keep water out of the ears.

Another thing I wish I knew was to have myself and my daughter checked for sleep disorders.  Speak to your doctor about a sleep study to possibly diagnose sleep apnea ( frequent brief periods when breathing stops) if snoring is present or if there is rapid weight gain.  Untreated sleep apnea can lead to weight gain because it leaves people feeling more tired during the day.  And when people need a boost of energy, they eat more.  If apnea is detected, I personally recommend avoiding intra-oral appliances that are usually dispensed by dentists.  These can alter your bite permanently and lead to TMJ and other issues.

One more  thing I really wish I had was a record of all our doctor appointments.  Not the actual medical records- though sometimes those are necessary- but rather a journal of visit highlights. There have been times when the number of appointments was overwhelming.  Having a notebook as a place to write down questions in advance with a space left for the doctor’s answer would have been very helpful.  Today, actual medical records can be transmitted with a touch of a button but they are often so structured that I often do not find then that helpful to remember exactly what was said during the visit.  Since LS is rare and unfamiliar to many health care providers, we need to be as knowledgeable as possible in order to ensure we are receiving the best possible care by our doctors  in all specialty areas.

The last thing I wish I did differently is to seek on-going emotional support.  I am not talking about friends or relatives but rather a licensed therapist.  Having a disability and then becoming a parent of a child with the same disability has had lasting impact on my emotional health- a fact that I denied for a long time. Certainly, not all personal problems are related to disability but, if you look deep enough, there might be a connection.   I started seeing a cognitive behavioral therapist earlier this year and it has definitely helped me to better manage my thoughts and feelings.  So, even if you think you have no time for another appointment, seeing a therapist ( for you and/or your child) is possibly the best way to enhance your overall well-being.