One of the things worse than finding out your baby has cerebral palsy is not knowing for certain whether he has it.
This is the situation that is frustrating Meg Croken and her husband, Sheldon, about their five-month-old son Nash.
To look at the happy, blond baby, it doesn香蕉视频直播檛 appear that there香蕉视频直播檚 a thing wrong with him 香蕉视频直播� until he is held. Nash is very stiff with what香蕉视频直播檚 known as high muscle tone. He香蕉视频直播檚 also not hitting many of his developmental milestones and is retaining other reflex behaviours that should have already faded away.
Nash香蕉视频直播檚 family doctor, a pediatrician and a neurologist suspect cerebral palsy (CP), an umbrella term that refers to a group of disorders affecting a person香蕉视频直播檚 ability to move. It is due to damage to the developing brain either during pregnancy or shortly after birth.
Cerebral palsy affects people in different ways and can affect body movement, muscle control, coordination, muscle tone, reflex, posture and balance. Although cerebral palsy is a permanent condition, some of these signs of cerebral palsy can improve or worsen over time.
An MRI scan is an essential piece in determining whether Nash香蕉视频直播檚 has CP or some other issue. The problem is, pediatric MRI scans require children to be put under anesthetic and can only be done in B.C. at BC Children香蕉视频直播檚 Hospital. This means extremely long wait lists unless it is the most dire of emergency. For Nash, the wait has been pegged at 27 months.
香蕉视频直播淭his is not OK,香蕉视频直播� says Meg, 香蕉视频直播淚f it is not CP, we need to be moving forward trying to find out what it is. If it is CP, the delay in diagnosis means we have delayed starting physical therapies or other treatments. Every professional I香蕉视频直播檝e talked to agrees that the earlier the interventions, the better the results, but you can香蕉视频直播檛 get access to many of these services without a diagnosis.香蕉视频直播�
Croken and her family doctor made attempts to get Nash onto MRI wait lists in Alberta, where there are pediatric MRIs done in Edmonton and Calgary, but with no success.
香蕉视频直播淚香蕉视频直播檝e had people say, well be glad your child isn香蕉视频直播檛 being airlifted to Vancouver today for an urgent MRI, but I feel like, to you this may not be urgent, but to me it is. If we wait 27 months, Nash will be two-and-a-half. We will have missed some very important windows. All the research says there are things you can do to have another part of the brain take over some of the damaged functions, but they all say the success rates are much higher if this happens before six months, before a year. So the clock is ticking,香蕉视频直播� says Croken. 香蕉视频直播淭here are also clinical trials for things like stem-cell therapies, but we are not eligible without a diagnosis.香蕉视频直播�
Never really envisioning herself as an advocate, Meg says, as a mother, she will do whatever it takes to get the best care for her child.
香蕉视频直播淚f earlier treatment means that instead of a possibly wheelchair, he could use a walker, that香蕉视频直播檚 huge for his quality of life.香蕉视频直播�
As she sits at her sunny kitchen table with Nash in her arms, Meg juggles the phone, as a call comes in from a doctor香蕉视频直播檚 office. She gets transferred around trying to get an answer as to how long Nash would have to wait for an MRI in Alberta or at a private clinic. Now they have been told Nash is not eligible in Alberta and most private MRI clinics will not take pediatric cases due to their complexity and the need for general anesthetic.
香蕉视频直播淚t香蕉视频直播檚 frustrating. I香蕉视频直播檓 not an Albertan, I香蕉视频直播檓 from B.C. I feel like my province should be doing a better job for Nash 香蕉视频直播� for all the kids on that wait list.香蕉视频直播�
Meg has high praise for her family doctor in Salmon Arm and the Shuswap Children香蕉视频直播檚 Association香蕉视频直播檚 Infant Development Program, which is offering some services to Nash in advance of a diagnosis.
Meg is working with Penny Ogasawara with the Infant Development Program to assist Nash by monitoring his developmental milestones, incorporating muscle development and infant massage techniques, as well as getting information and resources that could help Nash香蕉视频直播檚 condition, regardless of his diagnosis.
香蕉视频直播淥ur saying is babies can香蕉视频直播檛 wait,香蕉视频直播� says Ogasawara, whose program serves families of children from birth to three years old who are at risk for, or already have, a delay in development. They work with such young children because of research that shows 90 per cent of a baby香蕉视频直播檚 brain development occurs in the first three years of life.
If Nash has to wait the 27 months for an MRI diagnosis, he will be two-and-a-half before a diagnosis could be confirmed. And if it is not cerebral palsy, then additional medical consultations will be needed.
香蕉视频直播淚t香蕉视频直播檚 so hard trying to navigate the system,香蕉视频直播� says Meg. 香蕉视频直播淵ou feel so on your own, trying to talk to one booking office here and one specialist香蕉视频直播檚 office there and then a report gets misplaced over here, and you don香蕉视频直播檛 have the right form for something else,香蕉视频直播� she said. 香蕉视频直播淚 really feel I have to advocate for my child and for others like him. It wasn香蕉视频直播檛 really what I had planned, but someone香蕉视频直播檚 got to do this. The system needs to be doing more. Nash deserves more.香蕉视频直播�
