In short: We have some quality time ahead of us in an allergist’s office.
The very long: We took Josie to see an allergist today. About 6 weeks ago we had taken her to see one that was about 20 minutes away and really we should have left as soon as we walked in the waiting room. It was right out of the 1960s from the carpet down to the phones. While I have nothing against older stuff and certainly appreciate no need to replace what is not broken, I do have a problem with the nurse telling me she had to double check the panel of skin pricks she’d just done because one doctor does them in one order and the other doctor in the practice does them in a different order. Great, so which one is dairy? In short, we did not connect with the doctor. I’m sure he was very nice, but he basically thought environmental allergies had caused the problem and he wanted us to come back for more invasive tests at our next appointment.
In the meantime, I made an appointment with a doctor who came highly recommended and was in another state, an hour away. I then did a ton of research to confirm several things the first doctor told us and learn some new things: The penicillin test the pediatrician thought they could do is not reliable or desirable. Second doc said she won’t administer. So essentially there is no test that can say, ‘why yes, you *are* allergic to ‘x’ drug. I still don’t understand why they can’t take small doses and skin prick her with those--I asked, but I don't remember the answer--I think she said it just has to do with blood makeup. It is possible to be allergic to one drug in a family, but not others in the same family (but only in certain families of drugs is this the case). There are ‘challenge’ tests they can do to desensitize a patient so that they can indeed take the drug (something first doctor said needed to be performed in a hospital only if taking the medicine was urgent and something second doctor said would be performed in her office).
So today we drove an hour, waited an hour (despite being early for the apt) and after taking a history, the doctor order 12 skin prick tests and a control. Unlike doctor number 1, who had them performed on her back, doctor number 2 had them performed on her arm, which apparently is more sensitive in terms of producing a reaction. She tested for a whole slew of things from environmental to food including trees, nuts, shellfish, dairy, soy, etc. The only thing that showed a result was the control prick. Second doctor's nurse came in and measured the size of the welts and wrote all the notes on her arm in advance. Doctor number one brought these two comb-like devices in, rolled them across her back and walked out, then ran back quickly to draw with an ink pen a line down the middle of her back (see photo above). Josie did really well this second time (that’s not to say she happily sat there while getting each of the 13 pokes, but I upted the anti to promise not one, but 2 lollipops). They were cool multi-colored lollipops!
Then I told the doctor that with the other doctor she had shown slight reactions to a couple things and I mentioned Josie’s Aunt L, who apparently has had 2 rounds of skin pricks showing nothing, only to have things show up in a blood test. Poor Josie, she didn’t know what was coming and watched as the nurse tried (very hard) to find her vein in her arm, any arm, saying she was looking for the green line. Hearing her say that if she didn’t find something, she’d have the other nurse come in made me wish she would just cut our losses and get someone else. But she came through in the end on the very first poke and 2 viles (and not kiddie sized viles) of blood later and Josie will be tested for a whole battery of allergins. We get the results back in about 2 weeks and then the doctor will send us a letter containing all the results. If there are any allergies then we will apparently need to go back for more invasive tests to try and narrow things down.
The good news in all this is that the doctor thinks she may be outgrowing her dairy allergy since she showed no reaction. The bad news is that if she is outgrowing it, we will have to spend a day in the office doing a ‘challenge’ test of dairy before she is clear to have dairy.
Getting back to the drugs, that is the part where we are just plain out of luck. Doc 2 thought because 2 of the hive occurrences were in the spring that it might be related to allergies of some sort or some other unrelated issue and that she should potentially be treated for allergies--hence all the tests--basically they are looking for any indicator that could be controlled for to see if it is causing the reaction. She said we’re in a pickle because of Josie’s young age, and because each of the reactions were at the end of the course of treatment, there just isn’t a clear path. So, she is going to send a letter to our pediatrician with a cc to us that lists some drugs to try in lieu of those for which she has shown a potential reaction and that if the doctor feels it is medically necessary to give her one of the drugs she has had previously that we are to get it in powder form (before they add the water) and make an apt with her office to go in the next day and get essentially an all day challenge test starting at 7am where they will give her little bits of the medicine to test her reaction and that it will desensitize her for 5 to 10 days to complete to course of treatment. Of course if she develops a really bad reaction, then she can’t take the drug. This is where we wish there were a doctor closer. I am going to ask around and see if I can’t find someone who might be less than a one hour drive (in good traffic).
They can’t randomly desensitize or test because it’s good for only a certain number of days. So as she points out, if Josie gets sick while we are away, she can’t have the antibiotics she would need. So we would need to either return home, or hopefully try another drug that would have the needed results (she said sometimes these are the only drugs that will work).
So that dear readers (if you are still with me) is the scoop. I know there are parts of the nearly 3 hour apt. I left out and I am still left with plenty of questions, but once the blood results come back, we'll be able to figure out a path. Apparently when Josie gets older she'll be able t handle other drugs that she just apparently can't take at the moment.
The very long: We took Josie to see an allergist today. About 6 weeks ago we had taken her to see one that was about 20 minutes away and really we should have left as soon as we walked in the waiting room. It was right out of the 1960s from the carpet down to the phones. While I have nothing against older stuff and certainly appreciate no need to replace what is not broken, I do have a problem with the nurse telling me she had to double check the panel of skin pricks she’d just done because one doctor does them in one order and the other doctor in the practice does them in a different order. Great, so which one is dairy? In short, we did not connect with the doctor. I’m sure he was very nice, but he basically thought environmental allergies had caused the problem and he wanted us to come back for more invasive tests at our next appointment.
In the meantime, I made an appointment with a doctor who came highly recommended and was in another state, an hour away. I then did a ton of research to confirm several things the first doctor told us and learn some new things: The penicillin test the pediatrician thought they could do is not reliable or desirable. Second doc said she won’t administer. So essentially there is no test that can say, ‘why yes, you *are* allergic to ‘x’ drug. I still don’t understand why they can’t take small doses and skin prick her with those--I asked, but I don't remember the answer--I think she said it just has to do with blood makeup. It is possible to be allergic to one drug in a family, but not others in the same family (but only in certain families of drugs is this the case). There are ‘challenge’ tests they can do to desensitize a patient so that they can indeed take the drug (something first doctor said needed to be performed in a hospital only if taking the medicine was urgent and something second doctor said would be performed in her office).
So today we drove an hour, waited an hour (despite being early for the apt) and after taking a history, the doctor order 12 skin prick tests and a control. Unlike doctor number 1, who had them performed on her back, doctor number 2 had them performed on her arm, which apparently is more sensitive in terms of producing a reaction. She tested for a whole slew of things from environmental to food including trees, nuts, shellfish, dairy, soy, etc. The only thing that showed a result was the control prick. Second doctor's nurse came in and measured the size of the welts and wrote all the notes on her arm in advance. Doctor number one brought these two comb-like devices in, rolled them across her back and walked out, then ran back quickly to draw with an ink pen a line down the middle of her back (see photo above). Josie did really well this second time (that’s not to say she happily sat there while getting each of the 13 pokes, but I upted the anti to promise not one, but 2 lollipops). They were cool multi-colored lollipops!
Then I told the doctor that with the other doctor she had shown slight reactions to a couple things and I mentioned Josie’s Aunt L, who apparently has had 2 rounds of skin pricks showing nothing, only to have things show up in a blood test. Poor Josie, she didn’t know what was coming and watched as the nurse tried (very hard) to find her vein in her arm, any arm, saying she was looking for the green line. Hearing her say that if she didn’t find something, she’d have the other nurse come in made me wish she would just cut our losses and get someone else. But she came through in the end on the very first poke and 2 viles (and not kiddie sized viles) of blood later and Josie will be tested for a whole battery of allergins. We get the results back in about 2 weeks and then the doctor will send us a letter containing all the results. If there are any allergies then we will apparently need to go back for more invasive tests to try and narrow things down.
The good news in all this is that the doctor thinks she may be outgrowing her dairy allergy since she showed no reaction. The bad news is that if she is outgrowing it, we will have to spend a day in the office doing a ‘challenge’ test of dairy before she is clear to have dairy.
Getting back to the drugs, that is the part where we are just plain out of luck. Doc 2 thought because 2 of the hive occurrences were in the spring that it might be related to allergies of some sort or some other unrelated issue and that she should potentially be treated for allergies--hence all the tests--basically they are looking for any indicator that could be controlled for to see if it is causing the reaction. She said we’re in a pickle because of Josie’s young age, and because each of the reactions were at the end of the course of treatment, there just isn’t a clear path. So, she is going to send a letter to our pediatrician with a cc to us that lists some drugs to try in lieu of those for which she has shown a potential reaction and that if the doctor feels it is medically necessary to give her one of the drugs she has had previously that we are to get it in powder form (before they add the water) and make an apt with her office to go in the next day and get essentially an all day challenge test starting at 7am where they will give her little bits of the medicine to test her reaction and that it will desensitize her for 5 to 10 days to complete to course of treatment. Of course if she develops a really bad reaction, then she can’t take the drug. This is where we wish there were a doctor closer. I am going to ask around and see if I can’t find someone who might be less than a one hour drive (in good traffic).
They can’t randomly desensitize or test because it’s good for only a certain number of days. So as she points out, if Josie gets sick while we are away, she can’t have the antibiotics she would need. So we would need to either return home, or hopefully try another drug that would have the needed results (she said sometimes these are the only drugs that will work).
So that dear readers (if you are still with me) is the scoop. I know there are parts of the nearly 3 hour apt. I left out and I am still left with plenty of questions, but once the blood results come back, we'll be able to figure out a path. Apparently when Josie gets older she'll be able t handle other drugs that she just apparently can't take at the moment.
1 comment:
I think Josie is definatly taking after her Aunt L. Hopefully the RAST blood test will come up with better answers then prick tests.
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