Retinal dysfunction is incurable at this time.  With that in mind it is essential to use the remaining vision by wearing proper corrective lenses.  Regular visits to an ophthalmologist who is skilled in retinal disorders and in refraction are imperative.  Emotional and especially practical guidance of children and young adults who are losing their vision is not an easy task.  Because of their decreasing vision and night blindness, people with Laurence-Moon or Bardet-Biedl Syndromes benefit from orientation and mobility training and the use of a guide cane.  This way they can still maneuver safely in low light situations.  Tunnel vision requires special attention in mobility training, specifically in traffic situations.

a) Obesity

Obesity is difficult to control but with a well-balanced, specialized diet, a lot can be accomplished.  It is almost always necessary to engage a dietary specialist, especially one skilled in working with children with weight problems.  Obesity is also a sign of many other disorders, including Prader-Willi Syndrome.  People with Bardet-Biedl Syndrome can benefit from the diet control program that was developed for PWS.  Generally, the earlier a diet control program is started, the better.  However, it is never too late to try.  Thyroid testing for an underactive thyroid may be done but is often not helpful.  Also recommended is regular testing for diabetes, especially in teens and adults.

b) Hypogonadism

It is sometimes appropriate to address the underdevelopment of (male) genitalia with hormone treatments during puberty.  This can benefit males especially with the size of their penis and with secondary male development such as hair and beard growth.  Hormone supplementation for females may benefit irregular or non-existent menstrual cycles.  An extensive endocrinological investigation is seldom necessary because the treatments are occasionally intrusive and not always helpful.

c) Hand and Foot Disorders

Some skeletal deformities are easily corrected through surgery, especially for the extra fingers and toes.  Surgery is often considered at a young age.  Some other skeletal problems are not as easily corrected.  Years of physical therapy, orthopedic treatment, special shoes, etc. will be necessary to prevent the conditions from getting worse. 

d) Renal Disorders

Renal and urinary tract disorders should be identified early, through regular check-ups of the kidney function by a nephrologist and/or a urologist  (blood pressure, urine and blood tests, and ultrasounds).  With the right measures, such as medication to regulate the blood pressure and a good diet, it is possible to maintain acceptable kidney function and to avoid complications.  In case of decreasing kidney function eventual options may be dialysis or kidney transplant.

e) Epilepsy and Heart Disorders

Epilepsy can usually be regulated with medications.  Congenital heart malformations occur in some children, and are usually managed surgically if they are life-threatening or threaten function.

These full syndromes are often not diagnosed until after the child starts school.  Usually the parents already have had concerns about the child’s development for some time.  Doubt about their ability to educate their own child often surface in parents.  When confronted with a diagnosis, parents may feel relief that what they had imagined was confirmed as true.  At the same time, they may feel that they somehow neglected the child.  As a consequence, parents may try to shield the child from further disappointments.  Some parents find it hard to make clear demands of their child.  This serves to increase the child’s passivity and dependence.  A critical attitude towards themselves is therefore essential in parents of a child with Laurence-Moon or Bardet-Biedl Syndrome.  For the child’s optimal development, it is necessary to challenge the child to participate in activities.  Because of their diminished visual acuity and mental ability, knowledge does not always come on its own accord.  Education therefore makes extra demands of parents:

• The child’s surroundings may be adapted for such things as visibility, light, and contrast.
• Early attention to a good orientation and mobility is useful, considering the early onset of night blindness.
• Clear understanding and a set routine help children to keep a “grip” on their surroundings.
• Social development can be positively influenced through participation in a steady, quiet playgroup.

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