INTRATHECAL BACLOFEN USE IN CHILDREN ... .uk



INTRATHECAL BACLOFEN USE IN CHILDREN AND ADOLESCENTSA guidelineDeveloped by the paediatric ITB team: Dr Raj Lodh (consultant in paediatric neurorehabilitation)Mr John Goodden (consultant paediatric neurosurgeon)Katie Davis (paediatric specialist physiotherapist)Catherine Wilsmore (paediatric specialist physiotherapist)Sharron Peacock (spasticity nurse specialist)Andie Mulkeen (spasticity nurse specialist)Contents TOC \o "1-3" The Intrathecal Baclofen (ITB) service PAGEREF _Toc440967615 \h 3An introduction - Intrathecal Baclofen (ITB) pumps PAGEREF _Toc440967616 \h 4Figure 1 – Medical and surgical management flowchart for treatment of spasticity PAGEREF _Toc440967617 \h 5Figure 2 – Referral pathway for ITB PAGEREF _Toc440967618 \h 6Intrathecal Baclofen test dose PAGEREF _Toc440967619 \h 7Intrathecal Baclofen pump insertion PAGEREF _Toc440967620 \h 9Intrathecal Baclofen pump dosing and maintenance PAGEREF _Toc440967621 \h 10Figure 3- Choosing a starting dose for a new ITB pump PAGEREF _Toc440967622 \h 10Figure 4 – An example of a standard review timetable for a child with a new ITB pump PAGEREF _Toc440967623 \h 11Intensity of reviews PAGEREF _Toc440967624 \h 11Elective admission for intense dose escalation or decrease PAGEREF _Toc440967625 \h 11ITB pump elective withdrawal PAGEREF _Toc440967626 \h 11ITB pumps and MRI scans PAGEREF _Toc440967627 \h 11Figure 5 – Outline of dosing considerations for ITB PAGEREF _Toc440967628 \h 12Emergencies PAGEREF _Toc440967629 \h 131.Baclofen Over-dosage PAGEREF _Toc440967630 \h 132. Baclofen Under-dosage PAGEREF _Toc440967631 \h 14References: PAGEREF _Toc440967632 \h 15APPENDIX 1 – Care plan for patients admitted for intathecal baclofen test dose PAGEREF _Toc440967633 \h 16Pre-operative checklist for test doses PAGEREF _Toc440967634 \h 16Post test dose nursing instructions PAGEREF _Toc440967635 \h 16APPENDIX 2 - Care Plan for patients admitted for ITB Pump Implantation PAGEREF _Toc440967636 \h 17Pre-operative preparation PAGEREF _Toc440967637 \h 17Post operative care following implantation of ITB pump. PAGEREF _Toc440967638 \h 17Discharge advice PAGEREF _Toc440967639 \h 17APPENDIX 3 - ITB Physio Pathway PAGEREF _Toc440967640 \h 18APPENDIX 4 - Audit and Monitoring PAGEREF _Toc440967641 \h 19The Intrathecal Baclofen (ITB) serviceThe Vision for our service is:To improve the lives of children with chronic spasticity and/or dystonia and their families through the use of specialist spasticity management approaches with a focus on the use of intrathecal baclofen.The goals for our service are:All children referred to our service will be assessed by a multidisciplinary team and consideration for intrathecal baclofen therapy will be made in a child and family-centred manner. Where intrathecal baclofen is not felt to be appropriate, alternative management approaches to improve the child’s symptoms will be suggested wherever possible.Where intrathecal baclofen therapy is felt to be appropriate, we will aim to control symptoms no more than 6 months from referral. If this is not achieved the team will review the child’s case and suggestions will be made to change the management plan or suggest alternative treatment options.All children with an ITB pump will be managed safely with their and their family’s quality of life at the centre of everything we do. Dosing of ITB will be directed by child and family selected goals. Key people within the service:Dr Raj Lodh (ITB service lead consultant, Consultant in Paediatric neurorehabilitation)Mr John Goodden (ITB service neurosurgeon, Consultant Paediatric Neurosurgeon)Catherine Wilsmore (Paediatric specialist physiotherapist)Sharron Peacock (Spasticity nurse specialist)Andie Mulkeen (Spasticity nurse specialist)Emergency contact numbersPaediatric Neurology Ward (L52) - (24/7) 0113 3927452 /0113 3927552 ask for nurse in chargeClinical Nurse Specialists (Sharron and Andie) - (8am-5pm weekdays) 0113 3922640Neurosurgical registrar on-call - 07979928120Dr Raj Lodh / Mr John Goodden / on call paediatric neurologist - mobile phones through switchboardAn introduction - Intrathecal Baclofen (ITB) pumps Why?Intrathecal baclofen is a useful treatment option in carefully selected patients who have chronic spasticity or dystonia resistant to other treatment modalities. Spasticity is the involuntary, velocity-dependent, resistance to movement of a muscle. Dystonia refers to involuntary muscle contractions leading to abnormal movements and postures. Both spasticity and dystonia are common complications of damage or abnormality of the brain. Baclofen is a muscle relaxant which can be given orally or into the spine (intrathecally). When given intrathecally, baclofen doses required for a similar effect to oral doses are 100 – 1000 x lower. Current ITB pumps offer a significant amount of flexibility in dosing regimes allowing us to tailor treatment regimens to the child’s specific needs.Who?IndicationGeneralised or lower limb spasticity or dystonia which negatively affects function, quality of life or ease of cares.Management of autonomic dysregulation and spasticity / dystonia in early rehabilitation of children with acquired brain injury (can be useful in reducing the need for sedating drugs such as benzodiazepines).Occasionally used for palliation of troublesome symptoms (e.g. spasms) in progressive conditions.Less invasive management options have been tried already (see figure 1).Contra-indicationsDefinite history of allergic reaction to oral baclofen.Relative contra-indicationsConcerns regarding ability to tolerate general anaesthetic or medical instability.Untreated hydrocephalus (poor absorption of intrathecal baclofen and increased risk of CSF leak).Poorly controlled epilepsy.Child who is felt to rely on spasticity for upright positioning during gait or transfers.Spinal abnormalities that may make surgery difficult.Recent CNS infection.Difficulties with skin healing or bleeding disorders.Concerns regarding family’s ability to attend regular appointments or to respond in an urgent manner to emergency situations (i.e. drug withdrawal and overdose symptoms).Inadequate soft tissue in order to fit pump (as guidance a weight of 14 kg is used).Figure 1 – Medical and surgical management flowchart for treatment of spasticity 47053508255635AbbreviationsSDR - Selective Dorsal RhizotomyITB - Intrathecal baclofenDBS - Deep Brain Stimulation00AbbreviationsSDR - Selective Dorsal RhizotomyITB - Intrathecal baclofenDBS - Deep Brain Stimulation(If movement is restricted due to contractures – consider postural management review and orthopaedic referral)How? Figure 2 – Referral pathway for ITBIntrathecal Baclofen test doseWhy?It is a recommendation by the National Institute for Health and Care Excellence (NICE, July 2012) to conduct an intrathecal baclofen test dose on patients who are selected as candidates for ITB pump insertion. The purpose of the test dose is primarily to ensure that the patient does not have an adverse reaction to intrathecally administered baclofen. A test dose can give an indication of likely response to ITB treatment, however it should be remembered that this is only a one-off dose of intrathecal baclofen. A lack of a beneficial effect from the test dose does not necessarily mean that there will not be benefit from a cumulative dose from an ITB pump. The test dose will also help guide decisions regarding the starting dose of intrathecal baclofen if an ITB pump is to be inserted. Where there is a beneficial effect, the effect can guide further dosing of the ITB pump (i.e. what the desired effect from the ITB pump may ‘look like’).(Note that an ITB test dose is occasionally used in patients who are being evaluated as possible candidates for Selective Dorsal Rhizotomy. In this scenario, the purpose of the test dose is to establish whether there is any degree of underlying weakness when spasticity is temporarily diminished.)Who?All patients who are identified by the joint spasticity team (in clinic or on the ward) as ITB candidates. There are a few exceptions (to be decided by the MDT only), including:Patient had a previous ITB pump which was removed (e.g. due to wound infection or malfunction)Symptom control is urgent and a test dose would delay thisWhere it is felt that there is no suitable treatment alternative to ITB (e.g. palliative care)How?The nurse specialist will coordinate arrangements for the patient to attend as a day case. Intrathecal baclofen test doses are administered in theatre by the Neurosurgical team via a lumbar puncture technique under general anaesthetic. In exceptional circumstances (usually where there is a need to see response over a few days), an intrathecal catheter may be used. Please consult appendix 1: Care plan for patients admitted for intrathecal baclofen test dose.Dosing:Standard intrathecal baclofen test doses are 50 micrograms as a bolus.In certain situations, a smaller dose of intrathecal baclofen may be used, i.e. 25 micrograms (for consideration by ITB service Consultant):children who have a history of hypersensitivity to oral baclofenyoung children (<4 yrs) or children with a low body weight (<15kg)where there is significant concern about possible side effects for any other reasonITB test dose assessment:Assessment of response to ITB test doses will be conducted by ITB service consultant, a spasticity team physiotherapist and a specialist nurse. A pre-test dose and post-test dose assessment should be conducted. The post-test dose assessment should be at least 3 hours post administration of intrathecal baclofen.Assessments should include:1. Pre-test dosegeneral clerking and medical examination (paediatric neurology SHO)review by ITB service consultant and spasticity nurse specialistphysiotherapy examination of tone, joint range of movement, posture and degree of dystonia (see appendix 3)videoing of any specific goals highlighted by assessment (e.g. ease of dressing)2. Post-test dosereview by ITB service consultant and spasticity nurse specialist, recording of any adverse effectsphysiotherapy examination as above (see appendix 3)videoing of any specific goals highlighted by assessment (e.g. ease of dressing)Signs of Baclofen Overdosage – notify paediatric neurology consultant on-call and ITB service consultant immediatelyExcessive weakness of muscles beginning in the lower limbs first.Loss of head controlDifficulty swallowing/increased salivationNausea and vomiting.Increased sedation and excessive sleepiness.Urinary retention Dizziness.Fits (seizures)Severe overdose can affect the child’s breathing and they may require intensive care and ventilation.Intrathecal Baclofen pump insertionWhy?Indications for intrathecal baclofen management of spasticity and dystonia are detailed above. Who?All children deemed appropriate following an assessment by the joint spasticity multidisciplinary team (or for acute inpatients – the neurorehabilitation team). All children will have a satisfactory test dose outcome (see figure 2 above) or have appropriate reasons for proceeding without a test dose (see ‘ITB test dose’ section above).How?The spasticity nurse specialist will liaise with ITB service neurosurgical team, the pump manufacturers (technical support) and the family in order to determine an appropriate elective admission date for ITB pump insertion. A care plan for patients attending for ITB pump insertion is detailed in appendix 2.It is important to note the following points with regards to patients who have undergone ITB pump insertionThe ITB pump will be programmed in theatre to commence delivering baclofen from the following morning (starting dose as per figure 4).All patients who have had an ITB pump inserted should have a post-operative PA / Lateral chest + abdomen x-ray to check catheter tip site.For children with significant dystonia, the paediatric neurosurgical team will usually place a lumbar catheter insitu at the time of ITB pump insertion. This will usually remain in place for 3 days (depending on neurosurgical opinion).Intrathecal Baclofen pump dosing and maintenanceThe starting dose for the ITB pump will be determined by ITB service consultant in combination with the spasticity nurse specialists. The general guideline to selection of starting dose is represented below (figure 3).Figure 3- Choosing a starting dose for a new ITB pump (Note – This diagram assumes that goals have not been met at each stage, please also consult figure 5 regarding dose increases). All doses are in MICROGRAMS (mcg). Regular reviews (see figure 4) will be made and doses adjusted accordingly. Dosing decisions will be made in a multidisciplinary manner and be led by the selected goals of the child and family. GPs and local paediatricians will be informed of changes and refill dates by means of ITB patient review letters.There are 3 dosing modes for the Medtronic ITB pump (continuous, flexdose, pulsed dose and Patient Therapy Manager (PTM)). The selection of the most appropriate dose and dosing mode will be decided by the spasticity team and will generally be decided according to the factors outlined in figure 5.Figure 4 – An example of a standard review timetable for a child with a new ITB pump (flexible according to response and family circumstances)029845WEEK MONTH0 1 2 3 4 6 8 10 3 4 6 9 12 15 18 24 Spasticity specialist nurseSpasticity physio + Dr Lodh00WEEK MONTH0 1 2 3 4 6 8 10 3 4 6 9 12 15 18 24 Spasticity specialist nurseSpasticity physio + Dr Lodh2416628655860036285765586Intensity of reviewsThe nature of spasticity and dystonia means that the impact of symptoms on a child will vary with time. At times when dosing changes are made to address ‘unstable’ symptoms, a period of more intense review by members of the MDT may be required. The frequency of the reviews will be dependent on the nature of the symptoms and holistic considerations, such as impact of frequent review appointments, etc. Where possible, telephone reviews are used in order to reduce hospital attendance.Elective admission for intense dose escalation or decreaseIn order to allow more rapid escalation or decrease of doses in a safe environment, the MDT team may also decide to electively admit a child to L52; such a decision clearly needs to balance the benefits regarding symptom control against the disadvantages to the family (e.g. time off school, distance from home, etc). Children who have not responded to rapid dose escalation or to a total dose of 300micrograms/day will be considered for elective admission.ITB pump elective removalThere are situations where it is deemed necessary or beneficial to withdraw ITB therapy. For children who do not require a rapid pump removal, a timetable of gradual dose reduction should be devised. A referral for pump removal will be made to the ITB Neurosurgical team on successful withdrawal of ITB therapy. There are occasions where removal of the pump is not deemed appropriate, for example, palliative care patient.ITB pump urgent removalShould there be a need for more rapid pump removal, the child should be admitted to the Children’s Neurosciences ward and an appropriate plan should be agreed by the MDT team (including Neurosurgery).Elective replacement of ITB pumpThe most common reason for replacement of an ITB pump is due to end of battery life, the neurosurgical team will be notified at least 12 months prior to the estimated end of battery life date. Prior to replacement, families will be consulted regarding their desire to continue with ITB therapy and/or to consider alternative treatment options. ITB pumps and MRI scansThe following is an excerpt from the Medtronic website regarding MRI scanners:“The magnetic field of the MRI scanner will temporarily stop the rotor of the SynchroMed II pump motor and suspend drug infusion for the duration of the MRI exposure. The pump should resume normal operation upon termination of MRI exposure; however, there is the potential for an extended delay in pump recovery after exiting the MRI magnetic field because exposure to the MRI magnetic field may cause the motor gears within the pump to bind temporarily without permanent damage. This is caused by the potential for backward rotation of the pump rotor magnet when it aligns with the MRI magnetic field. This temporary binding may delay the return of proper infusion after the pump is removed from the MRI magnetic field. While extended delays in pump recovery are unlikely, reports have indicated that there is the potential for a two to twenty-four hour delay in return to proper drug infusion after completion of an MRI scan.”Any child with an ITB pump who requires an MRI scan should be notified to the spasticity specialist nurse. The presence of an ITB pump should be clearly marked on the MRI request. When a child attends for an MRI scan, the presence of an ITB pump should be notified to the MRI department. The presence of an ITB pump does not preclude an MRI scan for the child, but close monitoring of pump function needs to be undertaken before and after the MRI scan.In the unlikely event of a pump not restarting within 4 hours after an MRI scan, the child should receive an oral dose of baclofen (see below for dosing) and the specialist spasticity nurse will liaise with ITB service consultant and Medtronic.Figure 5 – Outline of dosing considerations for ITB 109728062865Commence on continuous ITB dose, (see figure 3)0Commence on continuous ITB dose, (see figure 3)23717251549400301942594615Yes00Yes2917190355600290512547307500188595040640000481965026873203133725266382501362075276860031908751753870Yes - definite pattern00Yes - definite pattern3130550155892500412242015589250048196501730375Yes - variable pattern00Yes - variable pattern4762502149475Continue with increases of continuous dosing (generally 10-15%)00Continue with increases of continuous dosing (generally 10-15%)41732202212975Consider PTM boluses00Consider PTM boluses25660352219960Consider flexdose00Consider flexdose03968750NOTE 2 – For any child who is not responding to increases in dosage, the ITB team will consider: Catheter / ITB pump malfunctionResistance to ITB (consider trial of pulsed dose mode)00NOTE 2 – For any child who is not responding to increases in dosage, the ITB team will consider: Catheter / ITB pump malfunctionResistance to ITB (consider trial of pulsed dose mode)03171825NOTE 1 – Any symptoms / signs of overdose (see “emergencies” section below) – assess patient as soon as possible and conduct a dose reduction to last tolerated dose00NOTE 1 – Any symptoms / signs of overdose (see “emergencies” section below) – assess patient as soon as possible and conduct a dose reduction to last tolerated dose444817592075Review and revise goals at next meeting00Review and revise goals at next meeting23895055492751885950200025Goals met?00Goals met?14636751082675Are there times in day or night when symptoms are particularly troublesome?00Are there times in day or night when symptoms are particularly troublesome?10191751682750No - continuous symptoms00No - continuous symptoms2381250615950No00No66040029989240014804571564821Emergencies All children admitted for management of emergencies should be urgently brought to the attention of the ITB specialist nurse and consultant (and if out of hours, the on-call paediatric neurology consultant).Any children presenting acutely will require interrogation of their ITB pump to help establish cause. This is done by appropriately trained members of the ITB team and, if unavailable, through the Medtronic technical support team. However, treatment of symptoms should not be delayed pending interrogation of ITB pump.Baclofen Over-dosageMild Overdose Symptoms (any of)TreatmentLethargyHypotoniaSet pump at minimum rate for a few hours until Baclofen is metabolised then titrate dose to a lower rate (half life of ITB is 4-5 hours). Moderate Overdose Symptoms (any of)TreatmentReduced consciousnessRespiratory depressionProvide assisted ventilation if necessary to maintain adequate oxygenation. Set pump to minimum rate. Once ITB has been metabolized, titrate dose to a lower rate.Severe Overdose Symptoms (any of)TreatmentUnconsciousness/coma Respiratory arrestProvide intubation and assisted ventilation until ITB has been metabolized. Set pump at minimum rate.Consider withdrawing CSF (20mls) by lumbar puncture then replace with 20mls of saline. Can repeat 2-3 times to speed the recovery.Never stop the ITB pump - always set at minimum rate which will deliver a minute non-therapeutic dose.A high percentage of ITB severe overdose and withdrawal is due to human error, including:Pump programming & catheter priming (initial implant, catheter revision, pump replacement)Incorrect programming following a dose adjustment and or drug concentrationMiscalculation of pump refill dateIncorrect planning of pump replacement dateIncorrect programming of pump alarms (low drug levels and battery life)Incorrect management of patient with ITB pumpFailure to check pump has restarted after MRIWithdrawal or overdosage may be due to catheter related problems (e.g. fracture or migration of catheter) and pump malfunction.Symptoms can be severe and abrupt or mild and gradual.2. Baclofen Under-dosage Mild to moderate underdosageSymptoms (any of)TreatmentGeneralised itching/tinglingLow grade pyrexiaIncreased spasticity or spasmsAgitationOral Baclofen (see below dose)Interrogate pump to see if wrong dose has been set. Increase the ITB dose and see if condition improves. Investigate pump system and catheter for malfunction- if present, surgery is likely to be needed. In case of pump malfunction, consult Medtronic and, if no solution, replace pump as soon as possible.Moderate underdosageSymptoms (any of)TreatmentGeneralised itching/tinglingLow grade pyrexiaIncreased spasticity or spasmsAgitationOral Baclofen PLUS oral clonidine (see below doses). As required oral diazepam in addition to above (consult paediatric neurology opinion regarding dosing and frequency). Interrogate pump to see if wrong dose has been set. Increase the ITB dose and see if condition improves. Investigate pump system and catheter for malfunction- if present, surgery is likely to be needed. In case of pump malfunction, consult Medtronic and, if no solution, replace pump as soon as possible.Severe underdosage (acute withdrawal)NOTE requires URGENT management as there is a significant risk of death and serious morbidity.Symptoms (any of)TreatmentAgitation/altered mental stateHyperpyrexiaHypotensionSeizuresReduced consciousnessExaggerated rebound spasticity and or rhabdomyolysisMultiple organ failurePICU admission urgentlyIntubation and supportive managementIV Midazolam infusion (see below doses)Interrogate pump to see if wrong dose has been set. Increase the ITB dose and see if condition improves. Investigate pump system and catheter for malfunction - if present, surgery is likely to be needed. In case of pump malfunction, consult Medtronic and, if no solution, replace pump as soon as possible (if patient unstable for pump replacement, a lumbar catheter can be introduced and used for intrathecal baclofen infusion temporarily). As patient recovers, step down treatment will be guided by paediatric ITB team and paediatric neurologist. DOSAGESOral Baclofen: < 30kg weight 10mg 6-8 hourly30-50kg weight 15mg 6-8 hourly>50kg weight 20mg 6-8 hourly)Oral Clonidine: Commence 1microgram/kg 6-8 hourly, Dependent on clinical response, daily increases as required to maximum of 25 micrograms/kg/24 hours) IV Midazolam infusion: 150microgram/kg loading followed by continuous infusion 2 micrograms/kg/min increased according to response every 30 mins to a maximum of 4 micrograms/kg /min.References:Berwick S, et al. Use of Intrathecal Baclofen in Children and Adolescents: Interdisciplinary Consensus Table. Neuropediatrics 2013 Vol. 45 No. 5/2014Dan B, Motta F, Vles JS, et al. Consensus on the appropriate use of intrathecal baclofen (ITB) therapy in paediatric spasticity. Eur J Paediatr Neurol 2010;14(1):19–28Albright AL, Cervi A, Singletary J. Intrathecal baclofen for spasticity in cerebral palsy. JAMA 1991;265(11):1418–1422NICE (July, 2012). Spasticity in children and young people with non-progressive brain disorders: Management of spasticity and co-existing motor disorders and their early musculoskeletal complications. Available at: . Accessed 15.7.15.Cruikshank, M. Intravenous diazepam infusion in the management of planned intrathecal baclofen withdrawal . Developmental medicine & Child Neurology 2007; 49: 626-629Watve S.V et al. Management of acute overdose or withdrawal state in Intrathecal Baclofen therapy. Spinal Cord 2012;50, 107-111APPENDIX 1 – Care plan for patients admitted for intathecal baclofen test dosePre-operative checklist for test dosesPatient in a highly observable area on the wardParent/ carer resident/ available to assist with the evaluation of the results of the test doseGeneral medical clerking completed (paediatric neurology team)Consent completed by neurosurgical teamPre-ITB physiotherapy assessment & video recording completedBaseline nursing observations (temp, BP, pulse, respirations & oxygen saturation and GCS) conducted and results satisfactoryPatient has been written up for (and administered) all usual medications (including oral baclofen)Intrathecal baclofen dose prescribed as a stat dose on front of the patients drug chart and ordered from pharmacyIntrathecal baclofen ready for sending to theatre with the patient (Note: ITB must be stored in a separate/lockable fridge which has been identified on Ward L52 and sent to theatre with the patient and drug chart).Post test dose nursing instructionsChild is monitored for adverse effects and observations recorded ? hourly for the first 4 hours then hourly for the next 2 hours, then 2 hourly for the next two hours, and return to 4 hourly observations (BP, pulse, respirations, oxygen saturation & GCS) before discharge. Monitor LP site for signs of leakage, child must be on flat bed rest for 2 hours, then sitting up only for a while, before being allowed to walk or sit in chair to try and reduced the risk of headache symptoms post lumbar puncture. Continuous oxygen saturation monitoring throughout observation period.Physiotherapy assessment 3-4 hours following the test dose.Continue with child’s usual drug regime including oral Baclofen throughout the whole test dose procedure.APPENDIX 2 - Care Plan for patients admitted for ITB Pump ImplantationPre-operative preparationAll patients having implantation of ITB pumps should be nursed on ward L52.General clerking procedure, pre-operative bloods (U/E’s, FBC & Clotting).Consent obtained by the paediatric neurosurgical teamEnsure ITB infusion is prescribed by the ITB service consultant and ordered from pharmacy. ITB must be stored in a separate/lockable ITB fridge which has been identified on ward 52.Patient to continue with usual drug regime including oral baclofen.Discuss post-operative analgesia requirements with the paediatric anaesthetist.Ensure ITB prescription and drug chart goes to theatre with the patientPost operative care following implantation of ITB pump.The ITB pump will be filled and a treatment dose set to commence the following day.Half hourly post operative observations (BP, pulse, respiration, SaO2, temp, GCS) & lumbar and abdominal wound site checks for 4 hours, then hourly observations for 4 hours, then two hourly for four hours, continue with four hourly observations until dischargeIV antibiotics for 24hours post operatively.Regular pain assessment and mence feeding when able to tolerate.Bed rest for 48hours then if no leaking or swelling to sit up when comfortable.After the operation the wound is covered with a dressing and sticky paper plasters. The dressing can be removed after a couple of days but the sticky paper plasters must be kept on and dry for 10 days. After 10 days the child may shower and the paper plasters will gradually fall off. Post operative PA / Lateral chest + abdomen x-ray to check catheter tip site (before discharge).Unless otherwise specified by the ITB service consultant, patients to carry on with usual oral baclofen dose until there is deemed to be a response to ITB (this is usually after discharge).Patient will be reviewed daily by a member of the ITB team and dose adjustments made according to the child’s response to treatment.Discharge prescription (TTO) - analgesia and, if deemed appropriate by the ITB service consultant, reducing doses of oral baclofen.Discharge adviceAll discharge advice and appointments with be organised by the spasticity nurse specialistWound care and activity advice.Discharge advice regarding Baclofen Withdrawal & Overdose (signs and symptoms) and emergency contact numbers must be given to patient before discharge.Patients GP to receive Baclofen Withdrawal & Overdose information (signs and symptoms) and emergency contact numbers. GP to be requested to add IT baclofen to issued elsewhere section of their prescribing system.Appointment with spasticity nurse specialist for ITB review & dose assessment one week post operatively. Written instructions/ discharge prescription regarding reducing/stopping oral baclofen as prescribed by the ITB service consultant, if applicable. Liaise with school nurse/GP/local paediatrician & district nurse etc.Regular appointments with spasticity nurse specialist, ITB service consultant and Physiotherapist for ITB therapy assessments and dose adjustments. .3-6 monthly ITB pump refills by spasticity nurse specialist.APPENDIX 3 - ITB Physio Pathway 72390010350500-38100110491AbbreviationsMAS - Modified Ashworth Score (for spasticity)GAS - Goal Attainment Score00AbbreviationsMAS - Modified Ashworth Score (for spasticity)GAS - Goal Attainment ScoreAPPENDIX 4 - Audit and MonitoringThe Intrathecal Baclofen Service will be subject to regular audit and monitoring, in order to ensure adherence to the ITB guideline, as follows:ActivityResponsible person(s)Suggested frequency and format for presentation of findingsClinical audit of ITB service and practiceSpasticity nurse specialist and ITB service consultant2 yearlyPaediatric neurosciences governance meetingsMonitoring of serious incidents and complaints (through trust DATIX and complaint systems)ITB service consultantAs soon as possible after notificationPaediatric neurosciences governance meetingsJoint adult / paediatric ITB governance meetings (2x/year)Review of ITB guideline and alterationsITB service consultant and Spasticity nurse specialist3 yearly (unless urgent changes needed in interim)Changes made, approval at paediatric neurosciences governance meeting and submit to Leeds Health PathwaysEnsuring holistic goal-focused careEntire ITB team6 monthlyITB Multidisciplinary Team goal review meetingsPatient and family feedbackSpasticity nurse specialistYearlyUsing anonymised reporting questionnairesITB Multidisciplinary Team goal review meetings ................
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