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New to this my 8yo Son was recently diagnosed

MySonhasSM Message
20 Jul 2017, 03:06 PM

On Monay July 10, 2017 my 8 year old son Svenn had an MRI of the spine and brain...his second MRI (1st was just his brain). Tuesday I received a call from his care coordinator at Shriners Hospital Salt Lake City where his Dr. is from whom ordered the MRI (2nd Dr. to see him there for treatment for his Clubbed foot), any ways we were informed he had a Syringomylia in his spine and  to seek out a Pediatric Neurosurgeron immediately. I have been calling ever since Tuesday July 11th to try to get him into see one. I have been doing extensive research and am so scared that  he may end up with nerve damage or paralysis. So far the only symptoms that I can determine are periodic bladder and/or bowel control. He is a non-verbal child and does his best to communicate his needs, feelings and wants. All of his Orthopedic care is put on hold until the Syringomylia is addressed and properly diagnosed and treated accordingly.  Any thoughts and information is greatly appreciated. Below is a picture of Svenn's Syrongomylia.

Ericatom1 Message
21 Aug 2017, 05:24 AM


im sorry to hear about this!  I don’t have much experience with this in children as I’m 30.  However I do know that while you need to get in to see a specialist very soon it may not be cause for panic.  Usually they are slow growing and it looks like his isn’t too big yet.  I think he’ll be ok at least until you see the specialist.  For me the worst part is the pain.  Make sure the dr knows that this can cause pain for people and that they address that for your son.  It may be hard to figure out if he is non verbal but everyone deserves adequate treatment for pain-even children and a lot of drs don’t address that aspect.  It can be hard to find a good dr for this so my advice is to keep looking if you don’t get the answers you need!  It is very frustrating to search for a dr that is educated in this but they do exist so please keep looking if you don’t get the answers you need.  If all else fails you may need to go to Mayo Clinic but don’t give up.