9 year old diagnosed with Parkinson's


#1
I have a 9 year old who has been diagnosed with Parkinson's. we think he's probably had it since birth. Does anybody else on the forum have experience of Parkinson's at such a young age?

#2
Hello and welcome to the forum Nat, I am so shocked to read your post about your boy, what a shame. There is somebody on the forum who was diagnosed very young and I am sure that if they see your post they will respond.

So many people think that pd is only an older persons condition but it appears to be hitting people so much younger these days. I would be so interested to hear what your sons symptoms were and how long it has taken to get a diagnosis?
What meds has he been offered and what the medical people are saying to you with regard to managing his condition at such a tender age?

I do hope that you do not mind me asking these questions, your family must be in shock and my thoughts are with you. Take care

glenchass

#3
I can really empathise with this ....I started having symptoms when I was about 8 years old and was started on sinemet aged 10. I am now 44 and was a photographer at the London 2012 Olympics please contact me I would love to hear from you ! I have never heard of anyone as young as me having PD . Hopefully I can share my experiences and help in some way?

regards

Matt

#4
Chris was a very jittery baby, but this was discounted by a neurologist at about 5 weeks old as nothing serious. He hit all his first milestones - sitting, rolling, babbling but he crawled late at 15 months and was still not walking at 20 months. We were referred to a neurologist who diagnosed cerebral palsy. His left foot turned inwards and he wore a splint to correct this. This was soon followed by the right foot. He started conductive education sessions and started walking at the age of 3. All was well until about 6 years of age when he began to develop a scoliosis. By the age of 7 it had developed to a 90 degree curvature of his spine. This was beginning to compromise his lung function and so he had corrective surgery in May 2010. The surgery went perfectly well but Chris got a urinary tract infection and then things went from bad to worse. He lost all the strength in his legs and couldn't bear any weight anymore. In January 2011 he ended up in intensive care on a ventilator due to aspiration pneumonia. We spent 6months in hospital during which time Chris lost all his movement in arms and legs. He began vomiting constantly and his weight dropped to a critical level. We were told by our neurologist that chris had a rare condition and there was nothing they could do for him. We were told to bring him home and t let him end his life there. of course, this wasn't an option for us and luckily, the gastro team fitted a jejenostomy so that when he vomited he didn't bring up any feed and he slowly began to put on weight. A different doctor thought he may have dopa responsive dystonia and Chris was started on levodopa. This transformed him and he stopped vomiting and was able to go to school again. Our neurologist referred Chris to a specialist in London and after nerve conduction studies and brain scans, Parkinson's was confirmed. It was clear from the DAT scan, that this is the diagnosis. We've been offered DBS and are waiting for a consultation regarding this. So that's our story so far. I would be interested to hear how other people have been affected b their Parkinson's as we're trying t find out as much as possible at the moment. Thanks for reading my VERY long post!

#5
wow , you've been through the mill my heart goes out to you and your family . Do you mind me asking which specialist you are seeing in London as thats where I was sent aged about 14 . The National Hospital for Neurology and Neurosurgery . I have also had DBS in 2006 and am due for a battery change in the Autumn . If I can be of any help please feel free to contact me.

best wishes
Matt

#6
We are under Dr Lin at the Evelina Children's Hospital. He is an expert in dystonia and uses DBS to treat that. I'm not sure how much experience he has with Parkinson's. Even so, he's done the right test - that's far more than anyone else has done so far!