holding back?

so much is happening that it is hard to keep up.

my daughter went into school for four days last week – yesterday for three hours. she had a second sleepover away from home last night. she went back to scouts – twice last week. today is annual Feast day, and my daughter will take part in a how to build a huge heavy tent as quick as you can competition. later, a party with friends…

we’re working towards her going away on a five-day school trip in mid-July. she wants to go away to scout camp for a week after that. i’m going to have to say no. her appointment at the pain services clinic in London falls squarely in the middle of that week.

i hate saying no. after five months of her body saying no to her, she does not want/need/accept no in any shape or form. now that the pain has substantially gone, she thinks she’s ‘better’, or at least there’s ‘nothing wrong’.

i wish i knew how Gabapentin works, what it is doing. i should be satisfied that Gabapentin = pain free. what i do know is that last weekend, when one dose was missed and a follow-up dose was late, the pain crept back.

the doctor said that in time the drug should ‘rewire her pain pathways’.

i like to think that is what is happening. it presents me with a reassuring picture of something faulty being fixed; something weakened becoming stronger.

in truth, i have no idea what’s going on. i’m not alone in this.

The effects of long-term (greater than 36 weeks) gabapentin therapy on learning, intelligence, and development in children and adolescents have not been adequately studied. The benefits of prolonged therapy must therefore be weighed against the potential risks of such therapy.

emc+

There is limited evidence to guide management of chronic pain in children, many pharmacological treatments are extrapolated from adult studies, and there are relatively few controlled trials evaluating the safety and efficacy of treatment in paediatric patients….Gabapentin has been reported to improve neuropathic pain in children, but there are no controlled trials and insufficient evidence to guide recommendations for the use of anti-convulsants for paediatric pain.
Pain in children: recent advances and on-going challenges (pdf) British Journal of Anaesthesia, 101 (1): 101–10 (2008)
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2 Comments on “holding back?”

  1. Ronni says:

    I am sitting in a hospital in the us with my 14 year old daughter who has had debilitating pain in her lower right abdomin and episodes of even more severe pain for over 3 months. The last few weeks have been worse, adding more symptoms that some say are panic attacks. after ct scans, appendectomy, ultrasounds, scopes and many dr visits, a neurologist started her on neurontin today. It has been a long day. Many drs continue to say it’s probably psychological and anxiety, but the pain was going on at a happy time for over 2 months before anxiety symptoms started. I am so disheartened and don’t know where to go from here. Thanks for sharing your story. I feel so alone and want to press on but don’t know how. How long did it take the neurontin to work? My daughter is also taking amitryptyline, which is how I found your blog, by googling the 2 medicines. Do you have any advice or thoughts on these medications? Hope your little one is still doing better. Thank you. Ronni


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