The Complex Tone Clinic at CRC offers a National consultancy service for children and adolescents under the age of sixteen with complex spasticity and dystonia. This clinic focuses on the child’s comfort and care needs through Paediatrician-led multidisciplinary consultations. Treatment approaches include, alternative oral medication, Intrathecal Baclofen Pump Therapy and therapy advice/support to parents, families and health professionals. Most children and adolescents who attend have a primary physical disability including cerebral palsy (GMFCS level IV-V), acquired brain injury or other more rare neurological conditions.
https://www.crc.ie/services/specialist/referrals/#mcetoc_1g4d8cnmo0
The Complex Tone Clinic in the Central Remedial Clinic, Clontarf takes place once a month
The Complex Tone Team in CRC comprises a multidisciplinary team of Paediatrician, Paediatric Neurosurgeon, Occupational Therapist, Physiotherapist and Complex Tone Nurse Specialist. The clinic provides specialist advise on managing complex tone in children.
Preparing for the clinic
In order to prepare for the clinic we would ask that you:
- Complete the form “Client’s local service contact list” as we will need to contact your child’s local therapy team.
- Complete the CPCHILD Questionnaire. (Caregiver Priorities & Child Health Index of Life with Disabilities). This questionnaire is about your child’s health, comfort and well being, and about caring for his/her needs. There is also a section where you can list the medications your child is taking . (tip: take a picture on your phone of the label of the bottles as doses can vary) This questionnaire is very important and will be the focus of the consultation.
- Think about 3 clear goals that you would like to achieve in your child’s management (please complete attached ‘Goals’ sheet).
- Videos on your phone of your child’s movements/position in their home environment can be useful (for example-position in bed, videos of movements if upset/excited).
What will happen at the clinic?
The clinic assessment and discussion will last about one hour. The clinic assessment covers background medical history, developmental milestones and other medical issues. Your child will have a physical examination including: range of movement, muscle tone, medication review and review of equipment and therapy needs.
The CPCHILD questionnaire and goals will also be reviewed with you and discussed. You will also be given the opportunity to ask questions and discuss concerns. It may be useful for you to have some questions written down in advance.
Following the assessment the team will discuss possible options that may suit your child’s management. This may involve one of the options or a combination of the options below:-
- Review of medication and doses.
- Introduction of new medications.
- Recommendations to local Paediatrician and therapy team.
- Consideration for an Intrathecal Baclofen Pump.
- Onward referral to other specialities eg: orthopaedics.
After the clinic
After the clinic the team will write to your local team to inform them of recommendations made from the clinic. The complex tone nurse specialist will contact you 2-3 weeks after the clinic to follow up on any changes/recommendations. The Nurse specialist will also provide further education about medication or surgical recommendations. If your child is considered suitable for further assessment for an Intrathecal baclofen Pump the nurse specialist will work closely with you on providing information and planning your child’s admission to hospital.
Intrathecal Baclofen
- Intrathecal Baclofen Test Dose (content to follow)
- Intrathecal Baclofen Pump Insertion (content to follow)
Selective Dorsal Rhizotomy
Selective Dorsal Rhizotomy (SDR) is a neurosurgical procedure to reduce spasticity. A small number of children with cerebral palsy are known to benefit from this. As this procedure is permanent careful child selection is important.
It is hoped that SDR surgery will be available in Ireland in due course. Meanwhile children who meet the referral criteria can be referred to be seen at the CRC and referred to the UK, on the Treatment Abroad Scheme.
If you feel that your child may be suitable for SDR it is important to raise this with your local paediatrician and physiotherapist. They will then jointly discuss and consider if your child is a potential candidate for surgery.
Referral Criteria
Spastic bilateral (diplegic) cerebral palsy
GMFCS II, III
Age 4-10y
Spasticity should be limiting function
No previous multi-level orthopaedic surgery
Stable hips and spine
MRI – changes of periventricular leukomalacia
Well-motivated child
The referral letter should be completed by the child’s paediatrician and must contain information regarding MRI brain, hip status, response to previous botulinum toxin/spasticity management and goals that have been discussed with the parents and child.
When baseline referral criteria have been met, the SDR assessment process is initiated. This involves two separate assessments:
- An SDR- specific physiotherapy assessment (form available on request, SDR team physiotherapist can assist/guide local physiotherapist in completion of same if required)
- Gait Analysis at the CRC (child must be at least 4 years old to enable a meaningful analysis).
Should there be a lack of certainty regarding the appropriateness of any referral the SDR assessment team is happy to discuss with local clinicians regarding specific cases at any point.
Contact point: Joanne Kehoe, Complex Tone clinical Nurse Specialist – 01 8542277
Neurosurgical Procedures for treatment of complex tone conditions are usually carried out as elective procedures and scheduling is arranged by the complex tone team in conjunction with the neurosurgery team.