Beeld: koekediefje
koekediefje: Onze reis met jeugdreuma
Inmiddels is de opname al weer even achter de rug. In totaal 4 dagen. Ze deed het ontzettend goed. Er was zeer fijne begeleiding van de pedagogisch medewerker. Gelijk de eerste avond had ze een erge pijnaanval. Dat gebeurde tijdens de opname nog 2 keer.
Helaas was er wat onduidelijkheid tussen de kinderarts. En de behandeld reumatoloog (ander ziekenhuis). Dat zorgde ervoor dat niemand echt goed wist wat er gebeuren moest. Maar de observatie hebben ze wel redelijk gedaan. Minder eten, minder actief, pijn, ochtendstijfheid. Helaas is er geen arts geweest tijdens de stijfheid en pijn.
De opname gaf voor onszelf mogelijkheid om even terug te kijken naar afgelopen jaar. Welke symptomen zien we. Met/zonder medicatie. Wij probeerden het voor onszelf op een rijtje te zetten.
Naar aanleiding van onze gedachten willen we graag een gesprek met de reumatoloog. Zonder dochter erbij. Waarin we rustig kunnen spreken wat wij denken, voelen en ervaren. Helaas lijkt die vraag niet goed binnen te komen. Na nog een extra bericht met uitleg erachter gestuurd te hebben krijgen wij een afspraak. Maar ook een berichtje met conclusie en beleid. We vinden dat erg jammer. We hadden juist aangegeven dit gesprek te willen voeren zonder beleid en conclusies.
Inmiddels zijn we een paar weken verder. Binnenkort staat het gesprek gepland. Ook hebben we een afspraak bij de pijnpoli gekregen. Daar zijn we blij mee. Hopelijk kunnen we tips krijgen hoe we met de pijn en stijfheid om kunnen gaan. En kunnen we een plan maken om de medicatie op een rustige manier af te bouwen.
Het is fijn dat we uit de onderzoeksfase zijn. Het is jeugdreuma en gelukkig niet nog iets anders. We kunnen zoeken naar wat voor ons werkt. De toekomst zal uitwijzen hoe nu verder.
Bo leeft al jaren met ondraaglijke pijn: “Voor mijn dochters ga ik door”
De bevalling van Jaleesa ging zó snel dat ze het niet kon bevatten
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