@rwinney My son has really given Dr Oaklander a run for her money! She’s pretty perplexed about what’s causing his SFN and why he hasn’t responded to any kind of treatment (medications, spinal stimulator, etc). We ran a complete exome genetic test on him and although we got the results back saying there were no mutations on any known genes to cause SFN (SCN9A and SCN10) she is still wanting to go through all the raw data from that testing to see if she can find something that looks off, but that takes longer to get back from the company who ran the test, so she’s waiting for that data. But if she can’t find anything there, she said she will most likely start treating it like an autoimmune to see if she can at least slow down it’s progression. She said kids are usually easier to treat because they don’t have the underlying health problems we get as we age, and although he’s always been healthy as a horse (albeit he seems to have some kind of connective tissue disorder based on his flexibility but wasn’t officially diagnosed with Ehlers Danlos) She can’t put her finger on why he has SFN. We are positive and optimistic, you have to be when your child has this horrible condition at age 15 and has had it for at least 3 years before being diagnosed. Our lives have certainly changed as his condition worsens (he was a soccer player who went oversees to play in tournaments) but now we stay closer to home and plan all outings around what accommodations we will be able to make for him and still make it fun for our younger son. We make it all work and just keep plugging along hoping for a break through or a definitive treatment path we can pursue.

I hope your new adventure with THC proves successful and you find some reliable and long lasting pain relief!! Fingers are crossed for you!!

Kate

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