Rash

[asiewny]

That is such a good point about the antibiotic affecting his adhd meds. That could very well be! He woke up this morning a little calmer, hoping he does ok at school. We'll find out when I pick him up how he is, but if he is still wild and out of control, I am going to ask if we can only do 10 days instead of 14 on this antibiotic-I can take a couple more days, but not a whole week like this! lol

I have just been on such an emotional roller coaster these last couple of months and then this reaction happened and I just can't help but feel like this was such a bad time for me to go back to work. Of course, when I took the job I didn't know he was going to be questionable CF! Now, there has been so much going on between his testing and my other children have been sick a lot this winter too! Just high fevers that last over a week and one with pneumonia.

He got some of his test results back and his stool elastase came back normal, which actually was a shock because I totally expected him to be PI because he is failure to thrive. Can you be FTT and not be PI because of CF? I was very relived that he was normal because this gives me some hope that maybe he doesn't have CF. But they also found some other things on his chest x-ray; something about a valve in his heart and to check for some kind of murmur and he has a mild curvature to his spine. But it also showed no signs of CF lungs either, which is great news! So, I am cautiously optimistic at this point-don't want to get too high and the amplified genetic test comes back and shows the genes. That is the only test we are waiting on now. We go back to the CF clinic in the beginning of May.
Thanks so much for thinking of us. He is doing so much better and the rash is getting much better! I will keep you updated!

 

[asiewny]

That is such a good point about the antibiotic affecting his adhd meds. That could very well be! He woke up this morning a little calmer, hoping he does ok at school. We'll find out when I pick him up how he is, but if he is still wild and out of control, I am going to ask if we can only do 10 days instead of 14 on this antibiotic-I can take a couple more days, but not a whole week like this! lol

I have just been on such an emotional roller coaster these last couple of months and then this reaction happened and I just can't help but feel like this was such a bad time for me to go back to work. Of course, when I took the job I didn't know he was going to be questionable CF! Now, there has been so much going on between his testing and my other children have been sick a lot this winter too! Just high fevers that last over a week and one with pneumonia.

He got some of his test results back and his stool elastase came back normal, which actually was a shock because I totally expected him to be PI because he is failure to thrive. Can you be FTT and not be PI because of CF? I was very relived that he was normal because this gives me some hope that maybe he doesn't have CF. But they also found some other things on his chest x-ray; something about a valve in his heart and to check for some kind of murmur and he has a mild curvature to his spine. But it also showed no signs of CF lungs either, which is great news! So, I am cautiously optimistic at this point-don't want to get too high and the amplified genetic test comes back and shows the genes. That is the only test we are waiting on now. We go back to the CF clinic in the beginning of May.
Thanks so much for thinking of us. He is doing so much better and the rash is getting much better! I will keep you updated!

 

[asiewny]

That is such a good point about the antibiotic affecting his adhd meds. That could very well be! He woke up this morning a little calmer, hoping he does ok at school. We'll find out when I pick him up how he is, but if he is still wild and out of control, I am going to ask if we can only do 10 days instead of 14 on this antibiotic-I can take a couple more days, but not a whole week like this! lol

I have just been on such an emotional roller coaster these last couple of months and then this reaction happened and I just can't help but feel like this was such a bad time for me to go back to work. Of course, when I took the job I didn't know he was going to be questionable CF! Now, there has been so much going on between his testing and my other children have been sick a lot this winter too! Just high fevers that last over a week and one with pneumonia.

He got some of his test results back and his stool elastase came back normal, which actually was a shock because I totally expected him to be PI because he is failure to thrive. Can you be FTT and not be PI because of CF? I was very relived that he was normal because this gives me some hope that maybe he doesn't have CF. But they also found some other things on his chest x-ray; something about a valve in his heart and to check for some kind of murmur and he has a mild curvature to his spine. But it also showed no signs of CF lungs either, which is great news! So, I am cautiously optimistic at this point-don't want to get too high and the amplified genetic test comes back and shows the genes. That is the only test we are waiting on now. We go back to the CF clinic in the beginning of May.
Thanks so much for thinking of us. He is doing so much better and the rash is getting much better! I will keep you updated!

 

[asiewny]

That is such a good point about the antibiotic affecting his adhd meds. That could very well be! He woke up this morning a little calmer, hoping he does ok at school. We'll find out when I pick him up how he is, but if he is still wild and out of control, I am going to ask if we can only do 10 days instead of 14 on this antibiotic-I can take a couple more days, but not a whole week like this! lol

I have just been on such an emotional roller coaster these last couple of months and then this reaction happened and I just can't help but feel like this was such a bad time for me to go back to work. Of course, when I took the job I didn't know he was going to be questionable CF! Now, there has been so much going on between his testing and my other children have been sick a lot this winter too! Just high fevers that last over a week and one with pneumonia.

He got some of his test results back and his stool elastase came back normal, which actually was a shock because I totally expected him to be PI because he is failure to thrive. Can you be FTT and not be PI because of CF? I was very relived that he was normal because this gives me some hope that maybe he doesn't have CF. But they also found some other things on his chest x-ray; something about a valve in his heart and to check for some kind of murmur and he has a mild curvature to his spine. But it also showed no signs of CF lungs either, which is great news! So, I am cautiously optimistic at this point-don't want to get too high and the amplified genetic test comes back and shows the genes. That is the only test we are waiting on now. We go back to the CF clinic in the beginning of May.
Thanks so much for thinking of us. He is doing so much better and the rash is getting much better! I will keep you updated!

 

[asiewny]

That is such a good point about the antibiotic affecting his adhd meds. That could very well be! He woke up this morning a little calmer, hoping he does ok at school. We'll find out when I pick him up how he is, but if he is still wild and out of control, I am going to ask if we can only do 10 days instead of 14 on this antibiotic-I can take a couple more days, but not a whole week like this! lol
<br />
<br />I have just been on such an emotional roller coaster these last couple of months and then this reaction happened and I just can't help but feel like this was such a bad time for me to go back to work. Of course, when I took the job I didn't know he was going to be questionable CF! Now, there has been so much going on between his testing and my other children have been sick a lot this winter too! Just high fevers that last over a week and one with pneumonia.
<br />
<br />He got some of his test results back and his stool elastase came back normal, which actually was a shock because I totally expected him to be PI because he is failure to thrive. Can you be FTT and not be PI because of CF? I was very relived that he was normal because this gives me some hope that maybe he doesn't have CF. But they also found some other things on his chest x-ray; something about a valve in his heart and to check for some kind of murmur and he has a mild curvature to his spine. But it also showed no signs of CF lungs either, which is great news! So, I am cautiously optimistic at this point-don't want to get too high and the amplified genetic test comes back and shows the genes. That is the only test we are waiting on now. We go back to the CF clinic in the beginning of May.
<br />Thanks so much for thinking of us. He is doing so much better and the rash is getting much better! I will keep you updated!

 

[hmw]

I am so glad the rash is continuing to improve. *what a relief* I can still remember the itching and misery; my skin even peeled like a severe sunburn where the 'hives' and bumps had been the worst... it was bad. I was so hoping your son was spared that. Bactrim has a higher association with some of the nastier reactions than some of the other antibiotics, for some reason. Be sure ALL the drs and NP's at the clinic know to never give it again!

What rough timing with your job. Isn't it always that way with transitions like that... it's hard enough to make life changes when kids are in the mix, throw in something like this- oh my. Wishing you strength to get through this.

I truly hope it does turn out that he doesn't have CF but also hope that if that is the case that you do figure out what is going on. I went back to your first post to refresh my memory and I see how similarly he presented as Emily- her drs wrote off her poor growth due to meds she was on, despite her eating like a horse; and once she was dx'ed her chest X-ray came back clear and she has good pft's. Her primary problems are digestive rather than respiratory at this point.

They never did the fecal elastase test with Emily... they decided first to see how she responded to the enzymes. She presented with FTT as well and felt that if she started growing and gaining weight on the Creon that it would be enough evidence of being PI. And the Creon has worked- she barely gained 2 pounds in the 3.5 YRS prior to dx, and now in the 4 MONTHS since dx she's put on 3.5lbs. Between this and her very positive sweat test (108) it doesn't leave much doubt as to her dx. It's hard with his sweat test being so borderline though... I hope the Ambry panel comes back soon. Will they call you when it comes in? They won't make you wait until May, will they? Hang in there.

 

[hmw]

I am so glad the rash is continuing to improve. *what a relief* I can still remember the itching and misery; my skin even peeled like a severe sunburn where the 'hives' and bumps had been the worst... it was bad. I was so hoping your son was spared that. Bactrim has a higher association with some of the nastier reactions than some of the other antibiotics, for some reason. Be sure ALL the drs and NP's at the clinic know to never give it again!

What rough timing with your job. Isn't it always that way with transitions like that... it's hard enough to make life changes when kids are in the mix, throw in something like this- oh my. Wishing you strength to get through this.

I truly hope it does turn out that he doesn't have CF but also hope that if that is the case that you do figure out what is going on. I went back to your first post to refresh my memory and I see how similarly he presented as Emily- her drs wrote off her poor growth due to meds she was on, despite her eating like a horse; and once she was dx'ed her chest X-ray came back clear and she has good pft's. Her primary problems are digestive rather than respiratory at this point.

They never did the fecal elastase test with Emily... they decided first to see how she responded to the enzymes. She presented with FTT as well and felt that if she started growing and gaining weight on the Creon that it would be enough evidence of being PI. And the Creon has worked- she barely gained 2 pounds in the 3.5 YRS prior to dx, and now in the 4 MONTHS since dx she's put on 3.5lbs. Between this and her very positive sweat test (108) it doesn't leave much doubt as to her dx. It's hard with his sweat test being so borderline though... I hope the Ambry panel comes back soon. Will they call you when it comes in? They won't make you wait until May, will they? Hang in there.

 

[hmw]

I am so glad the rash is continuing to improve. *what a relief* I can still remember the itching and misery; my skin even peeled like a severe sunburn where the 'hives' and bumps had been the worst... it was bad. I was so hoping your son was spared that. Bactrim has a higher association with some of the nastier reactions than some of the other antibiotics, for some reason. Be sure ALL the drs and NP's at the clinic know to never give it again!

What rough timing with your job. Isn't it always that way with transitions like that... it's hard enough to make life changes when kids are in the mix, throw in something like this- oh my. Wishing you strength to get through this.

I truly hope it does turn out that he doesn't have CF but also hope that if that is the case that you do figure out what is going on. I went back to your first post to refresh my memory and I see how similarly he presented as Emily- her drs wrote off her poor growth due to meds she was on, despite her eating like a horse; and once she was dx'ed her chest X-ray came back clear and she has good pft's. Her primary problems are digestive rather than respiratory at this point.

They never did the fecal elastase test with Emily... they decided first to see how she responded to the enzymes. She presented with FTT as well and felt that if she started growing and gaining weight on the Creon that it would be enough evidence of being PI. And the Creon has worked- she barely gained 2 pounds in the 3.5 YRS prior to dx, and now in the 4 MONTHS since dx she's put on 3.5lbs. Between this and her very positive sweat test (108) it doesn't leave much doubt as to her dx. It's hard with his sweat test being so borderline though... I hope the Ambry panel comes back soon. Will they call you when it comes in? They won't make you wait until May, will they? Hang in there.

 

[hmw]

I am so glad the rash is continuing to improve. *what a relief* I can still remember the itching and misery; my skin even peeled like a severe sunburn where the 'hives' and bumps had been the worst... it was bad. I was so hoping your son was spared that. Bactrim has a higher association with some of the nastier reactions than some of the other antibiotics, for some reason. Be sure ALL the drs and NP's at the clinic know to never give it again!

What rough timing with your job. Isn't it always that way with transitions like that... it's hard enough to make life changes when kids are in the mix, throw in something like this- oh my. Wishing you strength to get through this.

I truly hope it does turn out that he doesn't have CF but also hope that if that is the case that you do figure out what is going on. I went back to your first post to refresh my memory and I see how similarly he presented as Emily- her drs wrote off her poor growth due to meds she was on, despite her eating like a horse; and once she was dx'ed her chest X-ray came back clear and she has good pft's. Her primary problems are digestive rather than respiratory at this point.

They never did the fecal elastase test with Emily... they decided first to see how she responded to the enzymes. She presented with FTT as well and felt that if she started growing and gaining weight on the Creon that it would be enough evidence of being PI. And the Creon has worked- she barely gained 2 pounds in the 3.5 YRS prior to dx, and now in the 4 MONTHS since dx she's put on 3.5lbs. Between this and her very positive sweat test (108) it doesn't leave much doubt as to her dx. It's hard with his sweat test being so borderline though... I hope the Ambry panel comes back soon. Will they call you when it comes in? They won't make you wait until May, will they? Hang in there.

 

[hmw]

I am so glad the rash is continuing to improve. *what a relief* I can still remember the itching and misery; my skin even peeled like a severe sunburn where the 'hives' and bumps had been the worst... it was bad. I was so hoping your son was spared that. Bactrim has a higher association with some of the nastier reactions than some of the other antibiotics, for some reason. Be sure ALL the drs and NP's at the clinic know to never give it again!
<br />
<br />What rough timing with your job. Isn't it always that way with transitions like that... it's hard enough to make life changes when kids are in the mix, throw in something like this- oh my. Wishing you strength to get through this.
<br />
<br />I truly hope it does turn out that he doesn't have CF but also hope that if that is the case that you do figure out what is going on. I went back to your first post to refresh my memory and I see how similarly he presented as Emily- her drs wrote off her poor growth due to meds she was on, despite her eating like a horse; and once she was dx'ed her chest X-ray came back clear and she has good pft's. Her primary problems are digestive rather than respiratory at this point.
<br />
<br />They never did the fecal elastase test with Emily... they decided first to see how she responded to the enzymes. She presented with FTT as well and felt that if she started growing and gaining weight on the Creon that it would be enough evidence of being PI. And the Creon has worked- she barely gained 2 pounds in the 3.5 YRS prior to dx, and now in the 4 MONTHS since dx she's put on 3.5lbs. Between this and her very positive sweat test (108) it doesn't leave much doubt as to her dx. It's hard with his sweat test being so borderline though... I hope the Ambry panel comes back soon. Will they call you when it comes in? They won't make you wait until May, will they? Hang in there.