Much has been written here about it…
Beba- Do take a look at the top blue bar w/the down arrow and click on search – in the blank box… write in aseptic meningitis.
Short and long of it is twofold: Hydrate like crazy then watch, learn, and KNOW your rates of infusion! Learn what you can tolerate – then settle for no faster or slower than what is comfortable. If pre-meds of Tylenol and or Benedryl are needed? Don’t skimp, the price paid afterwards can be dear and painful.
Know what brand you are using and memorize what their suggested rates are, compare them to what is actually being done [my doc writes down the rates HE wants to administer at so there won’t be any error] If problems still persist, talk long and hard with your doc… is it the brand?, that nurse?, that nursing service?, or premeds?
I’ve also found that eating light meals 1-2 days before infusions along w/hydrating [often with one pint Gatorade the day before] helps keep headaches at bay. After infusions tho, I’m usually seriously hungry!
To me, in a simplistic way? Infusions for CIDP’ers are like insulin for diabetics.
Lianne? She must have it so, make the best of it! Yes, there are options such as steroids, but for one so young, the early threat of osteoporosis is NOT something one should look forward to, nor the possible weight gain?
Also the stem cell trial recruitment is still going on, but that too, is something SHE should investigate and explore… It’s time to grow up the hard way, and like all of us this stuff is much harder to deal with than many medical issues. But it’s got to be learned about, the options, the warts and all. Only she now can make the ultimate decisions at this point. Let her learn and fly or not.
Yes, it’s scary, but living with infusions is an inconvenience, yet a good one. I’ve met many fascinating people in infusion suites, some have become good friends and support for me, as I’ve tried to be for them. I wish the same for your daughter.
Good luck to both of you and heaps of hugs and good things!