the doctor I set the kids up to see called me back and said for him to see them would be tantamount to malpractice as they need a specialised team of doctors and his ID office does not specialise in hiv or pediatrics and it is completely out of the spectrum of his practice. The children he usually sees have things like Pneumonia or something that can be treated like a little adult with dosage changes. Hiv he says can NOT be treated like a little adult. it is a very specialised disease and for the best of the child they need to see a team of doctors and psychologists who specialise in this to help them as they develop and grow and treat their disease as well as their concerns. So I thought it would be so nice to only have to drive one and half hours and NOT into the big city for them to see doctors. But it looks like its off to the big city. there are only two places in the state that specialise in this. and one in the neighboring state. so I have to go to a HUGE medical system(famous one) or the University one. The doctor I spoke with recommended that I go to the U because they have higher numbers and thus more experience and better treatment care. so I will have to make new appointments at the U. I already have to drive to that city for my kids who go to Shriners for their ortho
condition. so I guess I will be doing a lot of driving. I HATE driving in the city and my husband will probably not be able to join me every time so I guess I will have to get used to that too.
It's a GOOD thing that you have specialist within a reasonable area. There are MANY families who drive 4+ hours to see a pediatric HIV specialist. Ours is fortunately within an hour. Try to make all of your specialist appointments for Shriner's and PID in one day and maybe even do an overnight somewhere with a pool for extra fun. (That is, if you are talking hours away). At any rate, you don't want any small-town docs - they have a rare condition which commands specialist attention for the very best treatment. Keep in mind that less than 100 children are born in US with pediatric HIV! It is (fortunately) VERY rare indeed, and only the most specialized docs are good enough for your kiddos.
ReplyDelete