Momwhosworried
05-30-2005, 07:06 PM
[FONT=Times] :unsure: [COLOR=purple]
Hello all, I'm very confused and scared at these sudden symtoms displayed by my 15 yo.
First a little history:
Her father has MS and Reynaulds disease.
Last summer she was hospitalized for 8 days for a sudden severe headache (she reported feeling as though someone had hit her in the back of her head with a hammer). She was misdiagnosed with pseudo tumor cerebri ( false brain tumor) which presents as having increased spinal fluid pressure that causes bulging of the optic nerve. I believe this was a snap diagnosis because she had been on tetracycline for acne, only for 2 weeks, and that is one of the causes of PTC. After 6 spinal taps, obstensibly to relieve the pressure from too much spinal fluid, and not even getting enough spinal fluid out to be able to take an opening pressure reading (I know, as an ex-nurse I demanded to be present and held my daughter on her side during the taps). They finally after 5 days called (on the phone) a neuro-opthomologist from National Childrens Hospital to get his take on the whole thing. Turns out that his diagnosis was a tear in her dura mater somewhere, whether around the brain itself or in the spinal dura, and that her worsening headaches would go away with a "blood patch" where they take the patients own blood and inject it into the spinal fluid (kind of a reverse spinal tap) the blood then circulates like the spinal fluid, finds the tear and clots there, closing the tear. Much like a scab on a cut anywhere on the body. She did get better, but never has been the same since. Due to all the spinal taps she has had pain, numbness, and at times decreased circulation in her legs. She has pain in her lower back all the time. She has missed almost the entire school year due to continuing back pain, headaches and fatigue. My once vibrant, outgoing, physically active young lady, has disappeared.
Yesterday she presented with a butterfly-shaped rash across her cheeks and nose,very tender to the lightest touch, I thought she was having an allergic reaction to something and applied Benadryl cream to the rash I also gave her 25mg of Benadryl which she promptly vomited up. Her cheeks and nose are somewhat swollen, she has "achy joints" and enlarged lymph glands in her neck. She slept somewhat durring the night after finally being able to keep down a second dose of Benadryl and an ice pack to her face. When I checked her this morning nothing had changed.
Besides a trip to the emergency room, and it's a Holiday here, where I know the only thing they will do is take blood and urine and refer her to a "specialist". Does anyone have a similar history that they've experienced or know of.
Anxiously awaiting replies, other than take her to see a rheumatologist, that I know to do and will call tomorrow to get an appointment.
Thank you so much,
Leslie
Hello all, I'm very confused and scared at these sudden symtoms displayed by my 15 yo.
First a little history:
Her father has MS and Reynaulds disease.
Last summer she was hospitalized for 8 days for a sudden severe headache (she reported feeling as though someone had hit her in the back of her head with a hammer). She was misdiagnosed with pseudo tumor cerebri ( false brain tumor) which presents as having increased spinal fluid pressure that causes bulging of the optic nerve. I believe this was a snap diagnosis because she had been on tetracycline for acne, only for 2 weeks, and that is one of the causes of PTC. After 6 spinal taps, obstensibly to relieve the pressure from too much spinal fluid, and not even getting enough spinal fluid out to be able to take an opening pressure reading (I know, as an ex-nurse I demanded to be present and held my daughter on her side during the taps). They finally after 5 days called (on the phone) a neuro-opthomologist from National Childrens Hospital to get his take on the whole thing. Turns out that his diagnosis was a tear in her dura mater somewhere, whether around the brain itself or in the spinal dura, and that her worsening headaches would go away with a "blood patch" where they take the patients own blood and inject it into the spinal fluid (kind of a reverse spinal tap) the blood then circulates like the spinal fluid, finds the tear and clots there, closing the tear. Much like a scab on a cut anywhere on the body. She did get better, but never has been the same since. Due to all the spinal taps she has had pain, numbness, and at times decreased circulation in her legs. She has pain in her lower back all the time. She has missed almost the entire school year due to continuing back pain, headaches and fatigue. My once vibrant, outgoing, physically active young lady, has disappeared.
Yesterday she presented with a butterfly-shaped rash across her cheeks and nose,very tender to the lightest touch, I thought she was having an allergic reaction to something and applied Benadryl cream to the rash I also gave her 25mg of Benadryl which she promptly vomited up. Her cheeks and nose are somewhat swollen, she has "achy joints" and enlarged lymph glands in her neck. She slept somewhat durring the night after finally being able to keep down a second dose of Benadryl and an ice pack to her face. When I checked her this morning nothing had changed.
Besides a trip to the emergency room, and it's a Holiday here, where I know the only thing they will do is take blood and urine and refer her to a "specialist". Does anyone have a similar history that they've experienced or know of.
Anxiously awaiting replies, other than take her to see a rheumatologist, that I know to do and will call tomorrow to get an appointment.
Thank you so much,
Leslie