Tamaretta
04-23-2007, 03:00 AM
Hi guys! I have been a "lurker" off and on for 2 years. After 7 years at a well-known children's hospital of constantly hearing "There's nothing wrong with your daughter that counseling won't fix" (how I WISH an anti-depressant and an hour on a couch could heal her) or my personal favorite "Perhaps the mom has Munchausen's??" (can CPS shut this woman up or make her leave us alone?) My (then)14 yo daughter was FINALLY diagnosed at a lesser known children's hospital with multiple spontaneous CSF leaks--unknown cause, therefore unknown cure....same story to alot of you I know. She spent 11 months in the hospital (2 1/2 of those at Cedars with Schievink - Mokri won't see her because of her age). Schievink placed an epidural catheter infusing Elliot B solution and brought her headache down from a "10" to a "5" and she didn't need anti-nausea med to eat. Too bad she developed meningitis and has never been out of bed since --14+ months....FYI - No surgery because in CA they couldn't pinpoint any leaks--despite having 40+ leaks in TX just a few weeks prior--in CA they used a lighter "weighted dye" to do the myelogram. When I suggested they use the same type and weight of dye that was used in TX so we were comparing apples to apples--I was informed that either Cedars or CA didn't allow that heavier weight to be used....We flew home to Texas on an air ambulance. No surgeries here either except to place an intrathecal device.
Unfortunately, while we are much more informed, her quality of life still sucks--she is now 16, flat on her back 24/7 and still her headaches are a "10", with some "pops" occuring in her head that will make her vomit. Do any of you experience that? She said the sensation is like when your ears pop on a plane but this is inside her brain and EXTREMELY painful.
Fortunately, here in Houston, we have an AWESOME team which consists of a pedi neuro, interventional radiologist and a cancer pain mgmt doc who are all fascinated by Taylor's case. The pedi neuro goes to any and all seminars he thinks might be relevant. He also discusses her case with any doctor he can find....He not only diagnosed my daughter with the CSF leaks, he also went back over 6 years of tests/results/history and found that she also has a protein losing enropathy - which might contribute to difficult healing the dura; referred us to an adult gastro (with literature) because based on some bioposy slides (from 6 yrs ago) he thought my daughter has type of colitis called collagenous colitis that is not mentioned in pediatric literature (it is only supposedly an adult disease)--he was right. This fits in with the connective tissue connection......He has been instrumental in getting my daughter the best care. Our pain mgmt doc is actually at the cancer center because my daughter has intractable pain and round the clock nausea (much like a cancer patient) and there are no doctors that are willing to treat pain in kids that's not cancer related..just wanted to give you guys some ideas that he wants to try in the future - He recently purchased (from an army surplus store) a fighter pilot suit for my daughter to try when the neuropathy in her feet improves--hoping the compression on her lower extremeties will help the headaches (and not blow any new holes). He is setting up an appointment with an endocronologist to see if growth hormones might benefit her due to the increased intracranial pressure side effect and the regeneration of tissue growth (healing the dura more quickly) and talking with a new "headache doctor" that just moved here from Boston. The pedi neuro surgeon is also talking with other neurosurgeons about using fibrin glue as a sealant (sort of spreading it from top to bottom). As far as we know, she is leaking from about C-3 to the base of her spine (can't remember the L number). On her last myelogram, the interventional radiologist said her nerve roots "looked like a Marfan's kid" but genetic testing says otherwise.
P.S. The pedi neuro also has a 15 yo male patient with multiple spontaneous CSF leaks from the mid-back down, but his symptoms are NO headaches, but lots of autonomic problems, tremors above 30 degree incline, heart racing, etc. At the same well-known children's hospital in Houston where my daughter was misdiagnosed, his parents were told "we don't know what's wrong with your son, but whatever it is we don't treat it!!!!"
Please feel free to email me with questions, ideas, opinions, whines--you get the picture. I know this doc is a pedi doc, but I think he is really interested in helping CSF leakers. The other patient's mom and I are trying to get him to open a "horizontal clinic" to help all leakers---not just pedi. Sorry for the book......
Unfortunately, while we are much more informed, her quality of life still sucks--she is now 16, flat on her back 24/7 and still her headaches are a "10", with some "pops" occuring in her head that will make her vomit. Do any of you experience that? She said the sensation is like when your ears pop on a plane but this is inside her brain and EXTREMELY painful.
Fortunately, here in Houston, we have an AWESOME team which consists of a pedi neuro, interventional radiologist and a cancer pain mgmt doc who are all fascinated by Taylor's case. The pedi neuro goes to any and all seminars he thinks might be relevant. He also discusses her case with any doctor he can find....He not only diagnosed my daughter with the CSF leaks, he also went back over 6 years of tests/results/history and found that she also has a protein losing enropathy - which might contribute to difficult healing the dura; referred us to an adult gastro (with literature) because based on some bioposy slides (from 6 yrs ago) he thought my daughter has type of colitis called collagenous colitis that is not mentioned in pediatric literature (it is only supposedly an adult disease)--he was right. This fits in with the connective tissue connection......He has been instrumental in getting my daughter the best care. Our pain mgmt doc is actually at the cancer center because my daughter has intractable pain and round the clock nausea (much like a cancer patient) and there are no doctors that are willing to treat pain in kids that's not cancer related..just wanted to give you guys some ideas that he wants to try in the future - He recently purchased (from an army surplus store) a fighter pilot suit for my daughter to try when the neuropathy in her feet improves--hoping the compression on her lower extremeties will help the headaches (and not blow any new holes). He is setting up an appointment with an endocronologist to see if growth hormones might benefit her due to the increased intracranial pressure side effect and the regeneration of tissue growth (healing the dura more quickly) and talking with a new "headache doctor" that just moved here from Boston. The pedi neuro surgeon is also talking with other neurosurgeons about using fibrin glue as a sealant (sort of spreading it from top to bottom). As far as we know, she is leaking from about C-3 to the base of her spine (can't remember the L number). On her last myelogram, the interventional radiologist said her nerve roots "looked like a Marfan's kid" but genetic testing says otherwise.
P.S. The pedi neuro also has a 15 yo male patient with multiple spontaneous CSF leaks from the mid-back down, but his symptoms are NO headaches, but lots of autonomic problems, tremors above 30 degree incline, heart racing, etc. At the same well-known children's hospital in Houston where my daughter was misdiagnosed, his parents were told "we don't know what's wrong with your son, but whatever it is we don't treat it!!!!"
Please feel free to email me with questions, ideas, opinions, whines--you get the picture. I know this doc is a pedi doc, but I think he is really interested in helping CSF leakers. The other patient's mom and I are trying to get him to open a "horizontal clinic" to help all leakers---not just pedi. Sorry for the book......