Neurofibromatosis with Syringomyelia

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Neurofibromatosis with Syringomyelia

Postby Dakota's Mom » Sat Oct 20, 2007 6:42 am

Hi. I am so glad that I found ASAP!

Our son, Dakota (10), has Neurofibromatosis with Autism and Cognitive Impairment (developmentally about age 5), generalized seizures, several plexiform tumors (one lumbar and sacral region but not involving deep tissue or bone), left thoracic scoliosis (14 degree curve) and we learned in April that he has idiopathic syringomyelia.

I have questions about symptoms. Dakota is very verbal, but he usually does not register pain well. Breaks bones (very low bone mineral density due to NF) but hardly complains. He does have a lot of gait instability, poor coordination, limited stomach muscle reflex, and insensitivity to heat---we had to lower our water temp way low to keep him from scalding himself; sits in tub with hot water on to help with shoulder pain.

Much of this has been with him for a long time with a lot more. Much of it is considered to be a part of the autism. So, how do we know when the SM is getting worse?

His complaining more of dizziness, slight increase in seizures, and extreme left shoulder pain---and for Dakota to scream in pain means that it is REALLY bad.

Also, what should we be doing as far as physical therapy/occupational therapy. Again, a lot of his issues get pushed off on to the autism. We are in a VERY small school district in North Dakota and he is the only child with disabilities of this nature (only 4 other IEPs in the school and all are mainstreamed--school is k-12 and only 58 kids). He has been removed from PE into an individualized PE and he was just declared homebound due to seizure and blood pressure increases.

We travel the 12 hours to Omaha for his medical care---we have had nothing but wonderful care over the years there. Drs. Puccioni (neurosurgeon), Pavkovic (neuro), Schaeffer (genetics) and Esposito (ortho) have all been wonderful.

Any help in sorting this out would be appreciated. He goes for x-rays 6 months and then MRIs every six months so he monitored every three months. I can't rush him to the clinic every time he is screaming in pain, but other than taking a breath, giving him Motrin, wrapping him in a heated blanket and rocking him, what else can I do--mostly to stop the worry?

Thanks so much--sorry this is so long!

Mom to Dakota
along the Canadian border in North Dakota
Dakota's Mom
Posts: 62
Joined: Sat Oct 20, 2007 6:17 am
Location: Omaha, NE

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