Childhood neurological pain
I have M.S so I know how well this site works so here goes. A friend of mine has a 9 year old son who has been diagnosed with Functional Neurological Disease who is struggling with Neuropathic pain and because of his age can't take the meds we would if needed. Is there anybody here with a child with M.S who has to deal with pain? Any tips or anybody knows of any trusted sites that could offer support or information. Unfortunately the family have been left without a paddle and are struggling.
Thanks for taking the time read this.
Does your friend live in a state where medical marijuana is legal? Something to consider...thanks, that had crossed my mind but we live in the UK so unless Sativex is available to them that would probably be a no go. Thanks for your idea though 👍
Hi,
! I am so sorry your friend and the family (and son) are dealing with this diagnosis. I think it's wonderful that you are doing what you can to find resources for them. The links I will be sharing with you will be specific to pediatric MS, but I think much of the information may still be helpful and at least give your friend a starting place when trying to find support and information for their son. Here's some good basic information -- https://multiplesclerosis.net/living-with-ms/cope-diagnosed-pediatric. And here's a link that has links to other sites that may be helpful for your friend -- https://multiplesclerosis.net/what-is-ms/how-parents-should-talk-to-their-child-with-multiple-sclerosis. Also, I liked this information on children and pain management and wanted to share it with yout -- https://www.mottchildren.org/mott-patient-visitor-guide/coping-with-pain. It's a little generalized, but some of the tips seemed pretty realistic, as I have used some of them when my own children have had serious injuries or are dealing with chronic pain like migraines.
I hope some of our members can chime in here, especially those that were diagnosed as children or have children with MS. And I hope this information is at least a little useful. Many parent support groups are pretty welcoming, even if a child doesn't have the exact diagnosis of the support group, so let your friend know that may be an option. Also, I know hospitals are stretched pretty thin right now (understaffed), but your friend may try contacting Patient Services if her/his child is admitted to the hospital. Sometimes, they have a wealth of resources most individuals are not aware of. Again, I am going to provide a link to a specific children's hospital, just to give you an idea what services may be available at another hospital -- https://www.mottchildren.org/mott-support-services/cfl. I am fortunate to live close to some awesome children's hospitals and I personally prefer them in certain situations involving my kids, as they are tailored to children and the staff tend to be incredibly knowledgeable on what kids need.
Best, Erin, MultipleSclerosis.net Team Member.thanks so much for taking the time to gather that information for me. I'll pass it on to our friends. I'm sure there will be something there that will help them a great deal. Thanks again. 😊 , you're quite welcome. I sincerely hope it helps, even a little bit.
Best, Erin, MultipleSclerosis.net Team Member.
