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Anyone have a little one on gabapentin?

realisticdreamsrealisticdreams member
in Special Needs
(neurontin, brand name)

The neurosurgeon called us friday and said the neuro he wants us to see, who can't get P in any sooner than late November wanted him to prescribe this for her in the mean time.  It's a gradual increase in dose, smells great..tastes..awful lol.

I'm not insanely comfortable with the idea of drugging her before we know whats going on, but she also told me that she stopped telling me about her pain because I told her their was nothing I could do to help.  Ouch.
DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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Re: Anyone have a little one on gabapentin?

  • realisticdreamsrealisticdreams member
    -auntie- said:
    Can you discuss this with her PCP and get a more informed opinion there? Does the doc feel that adding this med might help them determine what is causing the pain? Neurontin is often useful for nerve pain; how well it works my narrow down the diagnostic possibilities.

    I can appreciate your concern about adding a med that's not often prescribed for children, but the alternative is pain. I'm not sure what your DD's pain threshold is. Is this pain really milder discomfort? Is it a dull something that wears at her? Scares her? Or is it full on interfering with her quality of life? Do other meds like Tylenol or Advil work to mitigate the pain?
    I know if I discuss with the PCP he will say no way.  He is very very conservative.  We just gave her the one dose last night and coincidence or not she's still asleep 3 hours after she's usually awake.  I asked him if it would affect getting her a diagnosis and he said that it shouldn't because they will be aware that she is on it.  
    She has a very high pain threshold unfortunately.  2 weeks ago she was screaming and crying everyday and I told her she just couldn't that their was nothing we could do right now to fix it so to try and be a big girl.  I guess that worked too well though because she hasn't complained much the last week.  
    Tylenol and ibuprofen didn't help the pain at all.  It's her lower legs, from below her knees and both of her feet, and they hurt but also they are 'asleep' so tingly and numb.  Which i'm sure is more annoying that painful and she's falling alot because of it.
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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