Februari 2012
3
Inhoudsopgave
1
Introductie............................................................................................................................................4
1.1
Zorgpad...............................................................................................................................4
1.2
Samenwerking ....................................................................................................................4
1.3
Patiëntenvereniging............................................................................................................5
1.4
Leeswijzer ...........................................................................................................................5
2
LCHADD/MTPD.....................................................................................................................................6
2.1
Presentatie .........................................................................................................................7
2.2
Diagnose .............................................................................................................................8
2.3
De behandeling...................................................................................................................8
3
Begeleiding - Kinderen ...................................................................................................................... 11
3.1
Patiënt en/of ouders.........................................................................................................12
3.2
Casemanager ....................................................................................................................12
3.3
Kinderarts Metabole Ziekten ............................................................................................12
3.4
Vaste medebehandelaren: diëtist .....................................................................................15
3.5
Vaste medebehandelaren: kinderfysiotherapeut..............................................................16
3.6
Vaste medebehandelaren: kindercardioloog ....................................................................16
3.7
Vaste medebehandelaren: oogarts ...................................................................................16
3.8
Vaste medebehandelaren: (kinder)neuroloog ..................................................................16
3.9
Overige betrokken zorgverleners......................................................................................16
3.10
Overige aandachtspunten.................................................................................................17
4
Begeleiding – Volwassenen............................................................................................................... 19
4.1
Patiënt ..............................................................................................................................20
4.2
Casemanager ....................................................................................................................20
4.3
Internist Metabole Ziekten ...............................................................................................20
4.4
Vaste medebehandelaren: diëtist .....................................................................................22
4.5
Vaste medebehandelaren: fysiotherapeut........................................................................23
4.6
Vaste medebehandelaren: cardioloog ..............................................................................23
4.7
Vaste medebehandelaren: oogarts ...................................................................................24
4.8
Vaste medebehandelaren: neuroloog...............................................................................24
4.9
Overige betrokken zorgverleners......................................................................................24
4.10
Overige problemen ...........................................................................................................25
5
Kwaliteitsindicatoren ........................................................................................................................ 26
6
Consensus zorgpad LCHADD/MTPD.................................................................................................. 27
7
Disclaimer.......................................................................................................................................... 27