9yr old with neuropathy any help?

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My 9 yr old son has neuropathy (not sure what type as of yet) his neurologist has just prescribed him gabapantin, which after reading the side effects I'm concerned about giving it to him ?? we have been fighting doctors since he was 4 that there was something wrong with his arms and legs and after a very long tiring battle we are finally getting somewhere.

My boy suffers with sharp stabbing pains and his knees and calf's swell up to ridiculous sizes! He has trouble walking very far as it leads to uncomfortableness straight away and intense pain later. The only thing that helps a little bit is hot water bottles with no covers on the effected ares (and even then he says it isn't hot enough all tho it burns me!) Anybody have any handy tips on how to make him more comfortable as pl paracetamol and ibraproufen dosent help? Also anyone else who has taking the drug he has been prescribed could give me their opinions on it would greatly help

Tha ks guys xx

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  • Posted

    Wow, this is so darn sad. I have neuropathy and have had every procedure, surgery there is available and the only thing that helps me are the strong medications. I feared and fought taking them until I realized there were my ticket to a half way decent life. I follow the directions most carefully and am now grateful that I have these medications to give me some relief and activity. The pain from this condition is a challenge and my heart goes out to your boy and also to you.  I can only tell you that after many years of all of the misery I have accepted that my medications give me a chance at my new normal. And yes the meds cause some side effects but in my instance the benefits were bigger. These medications might be your salvation. I sent hugs and best wishes. Tell your boy I understand his pain and that he is a most brave young man. 🍀🍀🍀🍀🍀🍀🍀

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  • Posted

    Everyone side effects are different to others I am on a very high dose have been on them

    For a year now for small fibre neurophathy I take 9 a day at 300 mg your doctor would now best what drug

    To put a child on nerve damage or pain is best treated with gabapentin.

    If you are worried about the side effects ask for lidocaine patches which have no side effects at all I use both the lidocaine patches are on

    My feet 24 hours and no side effects at all

    Talk with your doctor about the concerns you have about gabapentin as its a very good drug for nerve pain.

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  • Posted

    Hi I have been off and on with Gabapentin and Pregabalin for over 17 years and they are the strongest painkillers you can get other than morphine. I have not had any side affects other than when I have to go from one to the other. I feel very sorry for your boy as no child should have these problems but if the Gabapentin is not working for him there are many alternatives so dont give up and get him back to his gp if nothing works and dont take any crap from them until you have a proper dx for your boy.
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  • Posted

    Have you checked your son for high uric acid (the cause of gout)this would cause the inflammation you described? 

    Like everybody else, children can experience inflamed, hot and reddened joints caused by gout making moving difficult for them. According to National Institute of Arthritis and Musculoskeletal and Skin Diseases, children can experience gout in any of their joints like their ankles, knees and fingers as well.

    The neurophy may be a simptom of the gout.

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  • Posted

    Hell what a brave little boy you have. I have 3 collapsed lumbar discs and sciatica and take 8 paracetamol,9gabapentin and 8 Tramadol a day. It does appear to help with the pain so that I can go about my day to dat activities. The Gabapentin as with all meds give side effects. The only one that I have with gabapentin is sometmes I will get a bit of myaclonic muscle jerks but compared to pain thats no problem.
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  • Posted

    Neurontin was an awful drug for me. I do know some people that live and die by it. I was on it for 2 years it didn't help any of my neuropathy symptoms as I was getting off of it trying other drugs the Depression was evident that insomnia was evident. I truly believe there is some withdrawal off that drug even if they do taper it down. To me it was a really nasty drug is most anticonvulsant are

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  • Posted

    I'm 21 and I have been experiencing nerve pain since I was 10 or eleven not nearly as bad as ur sons until recently and I never understood it was nerve pain until like 14 or 15 an sometime I enperience nerve pain that soo pain I'll start crying and I can move and I just have to sit there and deal with it but if it stabbing nerve pain keep him as still as u can and have him hold the area it sometime makes me feel bettr or try and distract him with something funny or weird enough that he almost forgets about it, if it's a burning nerve pain apply pressure with something cold again it won't always work but hey 50/50 shot, actually for any nerve pain holding still and breathing helps, gentle massage, there's a lot of different nerve pains and they can happen anywhere on anyone so a lot of the time there's not anything u can do but prepare yourself for the experience, laying down can help um shocking the nerves by putting ice cold water on first and it has to be super ice cold and then putting warm on can make it easier to feel it and that's all I can think of that could help I rlly hope it does

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