Is this normal for kids with a syrinx...

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

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Is this normal for kids with a syrinx...

Postby kellycotton1432 » Mon Feb 22, 2010 9:29 am

My daughter has really good days and then all of a sudden cannot get out of bed for a few days. This morning she called from school and told me she cannot keep her balance, her neck is stinging really bad and has a headache, but refuses to come home (she doesn't want her grades to slip). I really don't know what to do for her on these days to keep her comfortable. :( She has a syrinx from c4-c7 @2mm (fairly small from what I have seen). She is 12 and knows what she has, but I won't let her look at a list of symptoms, the balance is a new thing. Does anyone elses kids get really bad periodally and really good other days?

Thanks, Kelly
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Re: Is this normal for kids with a syrinx...

Postby lttutrow » Mon Feb 22, 2010 12:55 pm

Hi Kelly,
My daughter just turned 13 last week. She also is having dizziness/neck/head pain that we are still trying to sort out. I can't remember, did your daughter have CM too? Mine does not have SM, but did have her CM repaired; however, the dizziness/neck/head pain is back. The OT that we've been working with is suggesting that a nerve could have been effected, either in the surgery or CM itself, and so we are beginning the process of figuring out if it is an autonomic issue. Have you seen dynakids.org ? Another Mom pointed that site out to me, and I found it a helpful explanation.
Best wishes,
Lori
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Re: Is this normal for kids with a syrinx...

Postby Dakota's Mom » Mon Feb 22, 2010 1:45 pm

Hi! Our son has a syrinx C2-T8. He has good days and bad days, as well. Changes in barametric pressure really affect him, and now our school nurse is always on the look-out for Dakota when the weather is suppose to change. :lol: Most days, pain meds help take the edge off, although never really taking the pain away.

Balance issues are a little more serious. I would mention it to her docs to let them know.

Hope she is feeling better!!
Mom to Dakota (11)--Neurofibromatosis, SM (C2-T8), Left Thoracic Scoliosis, Seizure Disorder, Autism with Cognitive Impairment, Osteoporosis, Hypothyroidism, Untethering surgery 5/08
and Joshua (8)--happy, healthy, and supportive brother
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Re: Is this normal for kids with a syrinx...

Postby memom » Mon Feb 22, 2010 1:56 pm

Hi Kelly,

My daughter has good and bad days too. We practice art and music therapy to try and take her mind off the pain. If it is REALLY bad, we treat with motrin. It seems to take the edge off enough so that she can get comfortable and rest until it all passes. She experiences different symptoms on different days. I cannot figure out the pattern or triggers. Today, her tongue hurts - it aches. She had a brief moment of eye pain followed by 1/2 hour or so on not being able to look at any light. That went away, but now the pain has traveled to her legs and she cannot walk. This can last anywhere from a 1/2 hour to 2 or 3 days...we just never know.

Your daughter sounds like such a brave and strong girl. I hope for strength and peace for all your family.

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: Is this normal for kids with a syrinx...

Postby Janice » Mon Feb 22, 2010 2:05 pm

Thanks Lori!

Dynakids is a great site.

http://dynakids.org/

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: Is this normal for kids with a syrinx...

Postby kellycotton1432 » Mon Feb 22, 2010 6:01 pm

Katelyn (my dd) has not been diagnosed with Chiari, she had another MRI (Brain & Cervical) Friday and we are waiting on the results. The neurologist thinks she also has syringobulbia. She apparently fell off of a treadmill yesterday at her Nana's and didn't want to tell me because she knew I'd be upset. She has had a really bad headache all day and her neck is "stinging" - not even motrin will touch it :( I guess I better call the doc in the morning! Thanks for that site dynakids!! Love it!
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