EE Update
I've written several of these over the past week or so and none of them have gotten published. There's no new symptoms to report. G was on the medicine after his relapse and I just took him off on Monday, so no meds on Tuesday (May 8th).
Yesterday, after thinking all day long (all week, all month long really) about Isla, my childhood friend's daughter who was born with an under developed 4th chamber in her heart, I started thinking about G's condition. And then I started wondering what if he doesn't ever eat well? Will he grow out of this? What is the long term plan?
Which lead me to google "EE long term." The results were horrifying.
Feeding tubes. Liquid diets. Elimination diets. Children refusing formula and crying on the living room floor from starvation and hunger. Long term steroid use causing growth problems, thrush, cancer, etc.
Needless to say the freakout I felt was, in my opinion, justified.
No one likes sick children. In fact I'd say that it's probably the worst experience in the world. Even if it's just a cold or stuffy nose, hearing your child - especially your infant or preschooler - suffering to breathe is awful. Thinking about long term problems like G never eating pizza or ice cream (elimination diet) or repeated surgeries was enough to send me over the edge and itching to pack the car and go home to meet, yet again, with his specialist (whom I love).
I settled instead for calling the specialist and leaving a message, asking about long term and what the plan was, again? I know we'd talked about it, but these were new questions (or at least questions I'd forgotten the answers to); can this worsen? Why haven't we been talked to about removing food from his diet? Should we repeat the allergy test (first showed no food allergies)? What's going to happen to my son?
I half expected the PA to call me back. But within the hour the doctor himself called. And he explained again ...
The goal is to keep him off the steroids as much as possible. He will probably relapse, but topical steroids as we are administering go right through him, and do not have near the side effects that the other, more serious steroids have. Others go into the blood stream before they hit the liver, and that is how the more serious side effects are caused. The medicine G is on (or was on) is swallowed immediately and passes through him. He ingests less than 1%. Even the more serious steroids can be taken once or twice a year, but G's inhaler can be used much more frequently, in order to help him live a normal life, and will not show any side effects.
And I have watched for side effects. And I've seen none. I've said this before but I saw more side effects from the prev.acid than I do the flo.vent.
The doctor also said that the scary things I read on the internet are from folks who do not respond to the steroids we are on. They are the first things tried, and are the mildest, and do not help those with severe EE. Can G's condition worsen to where he doesn't respond? That is unlikely. Usually in cases like his, we only have to use the steroids topically for a few weeks a year, the rest of the year he is unaffected. And he may be one of the few cases where he doesn't relapse again, and it may resolve on it's own (re: he'll grow out of it). But we should expect him to relapse? More than likely, yes. Should I be worried about steroids stunting his growth? Not the steroids he's on. I have patients that are on more serious drugs and that is a concern, but G's EE is responding well to the flo.vent, and he really ingests so little of it.
He is a kind doctor. He takes me seriously. I know that seems like a given but so many don't. He told me if I get upset again to please call, he will talk me through it all again and answer all my questions. G will be okay. He also doesn't advise that I stay off the internet (my OB does - a lot) but instead encourages me to research and ask him questions. Which is nice too; even though I really should stay off the internet.
The end result is G's condition is not good. But it's not the end of the world and it seems like, at least according to what I saw online, there are far more kids (and adults) in worst shape. And I'm lucky we have an EE specialist in Dallas. I feel like we're getting good advice, so I feel better.
It is hoped that by 3 or 4 G has grown out of this or has learned to tolerate it in such a way that he does not throw up and can grow and thrive. I know the doctor is still hopeful for that outcome. But this condition is very treatable it seems and while it's not ideal ... there are so many other bad things.
I am grateful for the care we get. We are blessed.
Yesterday, after thinking all day long (all week, all month long really) about Isla, my childhood friend's daughter who was born with an under developed 4th chamber in her heart, I started thinking about G's condition. And then I started wondering what if he doesn't ever eat well? Will he grow out of this? What is the long term plan?
Which lead me to google "EE long term." The results were horrifying.
Feeding tubes. Liquid diets. Elimination diets. Children refusing formula and crying on the living room floor from starvation and hunger. Long term steroid use causing growth problems, thrush, cancer, etc.
Needless to say the freakout I felt was, in my opinion, justified.
No one likes sick children. In fact I'd say that it's probably the worst experience in the world. Even if it's just a cold or stuffy nose, hearing your child - especially your infant or preschooler - suffering to breathe is awful. Thinking about long term problems like G never eating pizza or ice cream (elimination diet) or repeated surgeries was enough to send me over the edge and itching to pack the car and go home to meet, yet again, with his specialist (whom I love).
I settled instead for calling the specialist and leaving a message, asking about long term and what the plan was, again? I know we'd talked about it, but these were new questions (or at least questions I'd forgotten the answers to); can this worsen? Why haven't we been talked to about removing food from his diet? Should we repeat the allergy test (first showed no food allergies)? What's going to happen to my son?
I half expected the PA to call me back. But within the hour the doctor himself called. And he explained again ...
The goal is to keep him off the steroids as much as possible. He will probably relapse, but topical steroids as we are administering go right through him, and do not have near the side effects that the other, more serious steroids have. Others go into the blood stream before they hit the liver, and that is how the more serious side effects are caused. The medicine G is on (or was on) is swallowed immediately and passes through him. He ingests less than 1%. Even the more serious steroids can be taken once or twice a year, but G's inhaler can be used much more frequently, in order to help him live a normal life, and will not show any side effects.
And I have watched for side effects. And I've seen none. I've said this before but I saw more side effects from the prev.acid than I do the flo.vent.
The doctor also said that the scary things I read on the internet are from folks who do not respond to the steroids we are on. They are the first things tried, and are the mildest, and do not help those with severe EE. Can G's condition worsen to where he doesn't respond? That is unlikely. Usually in cases like his, we only have to use the steroids topically for a few weeks a year, the rest of the year he is unaffected. And he may be one of the few cases where he doesn't relapse again, and it may resolve on it's own (re: he'll grow out of it). But we should expect him to relapse? More than likely, yes. Should I be worried about steroids stunting his growth? Not the steroids he's on. I have patients that are on more serious drugs and that is a concern, but G's EE is responding well to the flo.vent, and he really ingests so little of it.
He is a kind doctor. He takes me seriously. I know that seems like a given but so many don't. He told me if I get upset again to please call, he will talk me through it all again and answer all my questions. G will be okay. He also doesn't advise that I stay off the internet (my OB does - a lot) but instead encourages me to research and ask him questions. Which is nice too; even though I really should stay off the internet.
The end result is G's condition is not good. But it's not the end of the world and it seems like, at least according to what I saw online, there are far more kids (and adults) in worst shape. And I'm lucky we have an EE specialist in Dallas. I feel like we're getting good advice, so I feel better.
It is hoped that by 3 or 4 G has grown out of this or has learned to tolerate it in such a way that he does not throw up and can grow and thrive. I know the doctor is still hopeful for that outcome. But this condition is very treatable it seems and while it's not ideal ... there are so many other bad things.
I am grateful for the care we get. We are blessed.
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