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Botox injection saves infant's life

Published: 12 September 2005

More than just a wrinkle reducer... Botox valuable saliva management treatment

Dr. Sam Daniel knew he was taking a chance, but he felt it was the only option. What he was about to attempt was drastic. The procedure had proven effective in the past with a small number of older children and adults, but had never been attempted on someone so young with such a severe respiratory condition. Dr. Daniel, an otolaryngologist at the Montreal Children's Hospital of the MUHC and an expert in saliva management problems, was about to inject botulinum toxin (Botox) to paralyze the saliva glands of a 39-week-old child.

The infant was born premature with a rare genetic disorder called Charge Syndrome. The baby boy had been in the intensive care unit since birth, because of his unstable medical status that was aggravated by the aspiration of his own saliva. He was literally drowning in his own saliva. The secretions were pooling in his lungs, causing multiple bouts of pneumonia. As a result, he had to be intubated, a tube was inserted through his throat into his lungs, and he had to be placed on a ventilator to help ease his breathing. Multiple attempts to remove the child from the ventilator proved unsuccessful.

The medical team at the Montreal Children's Hospital discussed various procedures to save the little boy's life. A tracheotomy, or a permanent tube placed in the throat so saliva could be suctioned from his lungs regularly, was considered. Also, doctors proposed performing a pharyngotomy, which basically involves creating an opening in the side of the throat allowing the saliva to flow outwards down the child's neck. The third alternative was to perform a laryngeal separation, which involves separating the vocal cords from the oesophagus, the tube leading to the stomach. This would prevent saliva from pooling in the lungs, but the child would never be able to talk or swallow. All three proposals would address the impending health issues but would have as a consequence other medical problems resulting in a staggering amount of care that the parents would have to perform for the rest of their child's life.

The parents were extremely distraught. Seeing their son suffer and having to make such important decisions about medical options that would have a significant impact on their child's life and their family's future made them seriously consider withdrawing medical care and risk the possibility their son might pass away.

This is where Dr. Daniel stepped in, offering the parents one last-ditch attempt to save their son's life. He was ready to attempt a procedure which would be experimental, given the child's age and medical condition.

The parents agreed to the Botox injection and within ten days the excess secretions dried up, the intubation and ventilation were withdrawn, and eventually the little boy went home. Today, eight months later, he is doing very well. He still has some medical problems because of the Charge Syndrome, but he's strong and growing well. Every six months he will have to return for another Botox injection to keep the excessive drooling at bay. Dr. Daniel says it is too early to tell if he will need injections for life or if eventually his saliva secretion problems will dry up or his swallowing reflex will improve.

The Botox injection received by this little boy and other patients like him is off protocol. In other words, the government has not approved the use of Botox to treat saliva management issues and therefore doesn't pay for the drug treatment. "This is usually the case with a new treatment," says Dr. Daniel. "The government has to recognize the proven benefits."

Botox just one treatment used by new saliva management clinic

In March 2005, the Mackay Rehabilitation Centre opened a Saliva Management Clinic in partnership with the Montreal Children's Hospital of the MUHC. It is the only clinic of its kind in Quebec and one of only two such clinics in Canada.

Excessive drooling can be found in innumerable medical conditions most often associated with neurological impairments such as cerebral palsy, epilepsy and mental retardation. Children with saliva management issues can present with over-secretion of saliva, inappropriate posture, weak swallow reflex or limited sensitivity awareness of what is wet and what is dry.

This new specialized clinic will evaluate and treat youth presenting with significant and persistent saliva management problems. The clinic's mandate is to identify the cause of the saliva problems and to offer appropriate treatments. Mackay Rehabilitation Centre ensures the follow-up of the recommendations in conjunction with other resources in the community. The multidisciplinary team includes an ear, nose and throat (ENT) specialist, a neurologist, two dentists, a pediatrician, a speech-language pathologist, an occupational therapist and a social worker.

"Botox is just one of a few effective ways to treat the excessive drooling," says Dr. Daniel, founder and director of the Saliva Management Clinic. "Other corrective measures include surgery, vestibular shield, rehabilitation and behaviour modification."

"Kids with drooling problems are very often stigmatized. They are rejected by their peers, they have to cope with wet shirts and constant clean-up," says Diane Calce, clinical advisor for the Saliva Management Clinic. "It's hard for these kids to make friends or find jobs, because people tend to shy away from them. They fear contracting diseases from the saliva or simply because they are uncomfortable with the excessive drooling. As a consequence, these children, along with their families, frequently become socially isolated."

Excessive salivation can also cause some medical complications such as skin lesions or even pneumonia if the saliva is aspirated.

Calce has many examples of children and teens who have been helped by the Saliva Management Clinic. "When a parent has to cope daily with the saliva management problem of a child who also requires care for physical disabilities, addressing the excessive drooling alleviates their burden and makes their lives a lot easier," says Calce.

The Mackay Rehabilitation Centre is a centre for the physically disabled which offers specialized and ultra-specialized services to children with a motor or language impairment and to the deaf and hard-of-hearing of all ages. It offers a family-centred approach that includes rehabilitation, adaptation and social integration services.

The Montreal Children's Hospital is the pediatric teaching hospital of the 捆绑SM社区 Health Centre. This institution is a leader in the care and treatment of sick infants, children and adolescents from across Quebec. The Montreal Children's Hospital provides a high level and broad scope of health care services, and provides ultra-specialized care in many fields including: cardiology and cardiac surgery; neurology and neurosurgery, traumatology; genetic research; psychiatry and child development and musculoskeletal conditions, including orthopedics and rheumatology. Fully bilingual and multicultural, the institution respectfully serves an increasingly diverse community in more than 50 languages.

This year the MUHC celebrates the 100-year anniversary of the department of otolaryngology. It has evolved into a centre of excellence with respect to the delivery of improved clinical services, research and teaching in the fields of head and neck oncology, hearing loss, treatment of nasal and sinus disorders, evaluation of voice and swallowing problems, speech therapy, vestibular rehabilitation (dizziness and imbalance), and infant hearing screening. It has achieved milestones ranging from the first cochlear implant ever done in Quebec, performed by Dr. Melvin Schloss in 1984, to image-guided sinus and skull base surgery performed by Drs. Anthony Zeitouni, Mark Samaha, Saul Frenkiel and Sam Daniel using "stealth" technology.

The parents of the child mentioned in this press release have given us permission to tell their son's story, but do not wish to make the child's name public, and they have declined the opportunity to do media interviews.

To make an appointment at the Saliva Management Clinic please call the Mackay Rehabilitation Centre at 514-482-0500.

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