Im looking to find out if there are any other parents in this support group with a child with TN.
We havent seen the Neuro doctor yet except for in the hospital were she was for 5 days for pain control… Finally started her on tegretol and is already having side effects from the medication. blurred vision and dizzy spells fell down 3 stairs at school today. MRI tomorrow morning to see if she has anything in her head causing TN. God I wish I can make her pain go away!!!
Hi There,
Totally understand your frustration and how awful it is to see your child in pain and not be able to do anything about it. Our 13-year old son has been suffering from chronic stabbing ear pain for almost six months. He has had every test known to mankind come up as "unremarkable," and has yet to have a clear diagnosis beyond "some neuralgia," but is being treated medically with the standard protocol of drugs. He was on trileptal (very simialr to tegretol) and when they tried to push him from 1200mg/day to 1800mg/day, he had very similar side effects to what you're describing with your daughter. He is now off of that and only on 3600mg of Gabapentin/day, which he seems too tolerate OK, and they are trying to decide what second drug to try with him next (either Lyrica or Cymbalta, probably). It is very trial and error with the meds (for adults and kids), and the general approach seems to be to try a drug and increase it's dosage until it either has some effect or causes intolerable side effects. And then to try again. From what you're describing, I would think they would get her off of the Tegretol pretty quicklyl Gabapentin seems the first line of defense because it tends to be more easily tolerated in general, though it can take a long time to build up enough in the bloodstream to be effective.
You should get a CT scan in addition to the MRI, those will be the first steps towards seeing if you can get a clear diagnosis.
We are looking at places like John Hopkins, where they specialize in treating TN in juveniles, as well as getting a second opinion someplace like the Mayo or Cleveland Clinic. We have great care in Seattle, and he has been seen by many smart doctors, but the refrain we keep hearing is "We've never seen this in a 13 year old child." I'm not sure we will have a different outcome or course of treatment - and I think we're pretty far away from a surgical option - but figure going somewhere that maybe has seen this kind of neuropathic pain in children can at least provide more insight, and perhaps a real diagnosis.
Let me know how the MRI goes, and what you learn. It can be a long and frustrating path, and you need to take it one day at a time. Hang in there.
Steve