My son had a LP shunt put in about a month ago and we haven’t had any headache since. He was put on diamox in July and then titrated off of it in September and October since he wasn’t having anymore headaches (and they thought it was chemical meningitis), after being off the diamox for 9 days his headaches returned. We had 6 therapeutic spinal taps in about 8 weeks leading up to the shunt placement—no fun!! His neurologist doesn’t think he is progressing well on the oral predisone treatment, so we are seeing a rheumatologist next week, and then Taylor will be seen in March at the combined neuro/rheumatology clinic at Children’s here in Kansas City. Hopefully we will get answers, I just want my normal little boy back again!
My dad called tonight to give me the latest update. I guess they are having her sit up in a chair for a couple hours a day now. She is definitely moving her legs- not much, but they are moving! The first time in weeks!!! The shingles I guess are almost gone. She does have a fever again and fluid in her lungs, but I guess they have something to suck that out every day (?). It seems she is recovering- my whole family (who are with her) are getting very depressed. I’ve tried to get them all to check out this web site or do some research on their own, but their not. I seem to be the only one in touch with all of you, so I know the little accomplishments (moving her legs a little) are really big things.
It still breaks my heart that she has to struggle so much and that I just can’t be there with her.
Thank you all again for all the encouragement and thoughts and prayers!!!