How do your kids cope with pain?

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

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How do your kids cope with pain?

Postby jupes » Thu May 28, 2009 7:12 am

Hello everyone!

Luckily, my DD doesn't have the intense headaches like many have, only occasional mild Ha accompanied by light sensitivity,nausea and upset stomach.

Her main complaint is "aching" and "stiffness" from her neck to her feet. Motrin usually doesn't help but gets some relief from massage and heat. I think this may be related to the syrinx which goes from C5 to T1 and from T5 to T12. The syrinx is small in diameter and none of the Docs will say for sure that the syrinx is the cause of this discomfort!? Do any of your kids complain of muscle aching and stiffness and if so what works for them? Did any of these symptoms improve after decompression or with medication?
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: How do your kids cope with pain?

Postby perdue442 » Thu May 28, 2009 9:22 am

Hi - Our daughter also complains with these types of pain. It had gotten so bad over the winter her doctors put her on Neurotin, but she had to be taken off of this because of aggression. Currently she is taking Lyrica, which helps her everyday pain and headaches. However, if she has big weekend or over does it she is still in a great deal of pain. We purchased a bubble mat for our bath tub, we run the tub full of hot water and she soaks, sometimes more than once a day. We also use a heating blanket on her bed and she will wrap herself up and get good and warm. I don't know about your child, but we tried physical therapy to teach her limitations and how to do things in moderation. We have also done therapy in the pool to help strengthen some of her weaker muscles. Hope this helps!

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Re: How do your kids cope with pain?

Postby TiredMom » Thu May 28, 2009 9:57 am

Unfortunately, I have to say Pres doesn't deal with pain well. We're limited to IB or Tylenol, the docs just won't consider placing him on anything else at this point. He has the occipital HA but also has traditional migraines, neck/back pain, pain in arms/legs. If he over does, or if he sneezes or has a hard time with a BM we can add nause and vomiting to the pain mix. He's also somewhat sensitive to larger doses of IB and Tylenol both, which means we give Pepcid every time we give pain meds. We use heat, heat creams, baths. He can't tolerate massage. We do limit activity and have made lots of accommodations for him (no pillow, raised head of bed, have book holder to hold books upright for reading). Our biggest issue is that uncontrolled pain feeds his anxiety, which feeds the pain mix, which feeds the anxiety--we just have a vicious loop.
Mom of 9 yo boy with Chiari I, Pineal Cyst, Microdup. Synd. 15q, Mito. Disorder, Ctrll. Sleep Apnea/Sleep Mvmt. Disorder, Asperger's, Hypotonia, Aphasia, GAD, OCD, occipital headaches, etc. Visit at
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Re: How do your kids cope with pain?

Postby Deborah » Thu Jul 02, 2009 9:18 pm

My daughter doesn't show a syrinx in her scans - I have one, but strangely she gets very similar symptoms to mine. She gets severe muscle spasms in her thoracic and neck regions. We searched for doctors for years and there are no pain management specialists in Chicago. Finally, we ended up at Children's Memorial - they are wonderful. She also suffers from severe migraines. She is 16, this has been going on since she was 12. Doctors don't like to prescribe pain medication - but after watching her go from a happy normal child to laying there exhausted and unable to play with her friends because of pain I had to dig my heels in and insist they help her. She does go to physical therapy and it helps a lot. She takes celebrex and tramadol - these have changed her life. When she gets muscle spasms, she can take a flexeril at night and it loosens them. She tries not to take the medications unless she needs them -but the fact she has them and they provide relief has allowed her to have a completely normal life.

Okay, when she tried to go for lifeguard training - she couldn't swim to bottom of pool because it sets her back off-- but we think that is just a minor restriction.

You have to be an advocate for your child.

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