Minocycline Angst

T

ToriMom

Guest
Hi everyone!
I am new to this forum/posting, but I have been using this web site as a resource for a few years. My daughter is five years old w/CF, and she is culturing Sten Maltophilia. Last week she was coughing up blood so after trying Levo 3 months ago the doc decided to put her on Septra and Minocycline even though she is actually too young to be on the tetracyclines. Anyway, she developed a horrid rash from the Septra so we stopped that med last night. Now she is very dizzy/naseous/has headaches from the minocycline. She has been almost completely bed-ridden with the side affects from this minocycline. I suppose there is no REAL question here--just a parent going nuts and feeling very helpless right now. I trust my doctor completely, but I don't know if I should call and complain about how miserable she has felt. Is this a normal reaction? I just want her to be safe...the discomfort she is in seems excessive, but we are only five years into this CF life.
Thanks for listening.
Michelle<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
T

ToriMom

Guest
Hi everyone!
I am new to this forum/posting, but I have been using this web site as a resource for a few years. My daughter is five years old w/CF, and she is culturing Sten Maltophilia. Last week she was coughing up blood so after trying Levo 3 months ago the doc decided to put her on Septra and Minocycline even though she is actually too young to be on the tetracyclines. Anyway, she developed a horrid rash from the Septra so we stopped that med last night. Now she is very dizzy/naseous/has headaches from the minocycline. She has been almost completely bed-ridden with the side affects from this minocycline. I suppose there is no REAL question here--just a parent going nuts and feeling very helpless right now. I trust my doctor completely, but I don't know if I should call and complain about how miserable she has felt. Is this a normal reaction? I just want her to be safe...the discomfort she is in seems excessive, but we are only five years into this CF life.
Thanks for listening.
Michelle<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
T

ToriMom

Guest
Hi everyone!
I am new to this forum/posting, but I have been using this web site as a resource for a few years. My daughter is five years old w/CF, and she is culturing Sten Maltophilia. Last week she was coughing up blood so after trying Levo 3 months ago the doc decided to put her on Septra and Minocycline even though she is actually too young to be on the tetracyclines. Anyway, she developed a horrid rash from the Septra so we stopped that med last night. Now she is very dizzy/naseous/has headaches from the minocycline. She has been almost completely bed-ridden with the side affects from this minocycline. I suppose there is no REAL question here--just a parent going nuts and feeling very helpless right now. I trust my doctor completely, but I don't know if I should call and complain about how miserable she has felt. Is this a normal reaction? I just want her to be safe...the discomfort she is in seems excessive, but we are only five years into this CF life.
Thanks for listening.
Michelle<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
N

NoExcuses

New member
I have no experience in this area, but i will suggest getting a hold of the perscribing information for the medicines in question. You can do this by asking your pharmacist (go in person or have it faxed to you) or going to the product's website.

It will list all side effects.

Finally I always err on the side of caution - if you're worried about something, call the doc. That's why they make $300,000 + a year.
 
N

NoExcuses

New member
I have no experience in this area, but i will suggest getting a hold of the perscribing information for the medicines in question. You can do this by asking your pharmacist (go in person or have it faxed to you) or going to the product's website.

It will list all side effects.

Finally I always err on the side of caution - if you're worried about something, call the doc. That's why they make $300,000 + a year.
 
N

NoExcuses

New member
I have no experience in this area, but i will suggest getting a hold of the perscribing information for the medicines in question. You can do this by asking your pharmacist (go in person or have it faxed to you) or going to the product's website.

It will list all side effects.

Finally I always err on the side of caution - if you're worried about something, call the doc. That's why they make $300,000 + a year.
 
I

Icklerose

New member
HI there I culture stenotrophomonas Maltophilia as well and i have had various combinations of drugs due to reactions i have with the meds. I am on IV colomycin at the moment and oral minocycline, and i have no problems with these drugs thankfully. But if i were you i would consult my doctor with regard to your child suffering the way she is.

I am a parent also and i know that if my son was sufferring from a reaction caused by medication i would be getting in touch and i also would not be happy at the docs prescribing something that is clearly not suitable for my child due to the age recommendation given for the prescription of the drug.

I have waffled on a bit here but feel free to contact me if you want to chat.


Rose Marie Cain
PWCF aged 40 and a parent of a 19 yr old son wocf
 
I

Icklerose

New member
HI there I culture stenotrophomonas Maltophilia as well and i have had various combinations of drugs due to reactions i have with the meds. I am on IV colomycin at the moment and oral minocycline, and i have no problems with these drugs thankfully. But if i were you i would consult my doctor with regard to your child suffering the way she is.

I am a parent also and i know that if my son was sufferring from a reaction caused by medication i would be getting in touch and i also would not be happy at the docs prescribing something that is clearly not suitable for my child due to the age recommendation given for the prescription of the drug.

I have waffled on a bit here but feel free to contact me if you want to chat.


Rose Marie Cain
PWCF aged 40 and a parent of a 19 yr old son wocf
 
I

Icklerose

New member
HI there I culture stenotrophomonas Maltophilia as well and i have had various combinations of drugs due to reactions i have with the meds. I am on IV colomycin at the moment and oral minocycline, and i have no problems with these drugs thankfully. But if i were you i would consult my doctor with regard to your child suffering the way she is.

I am a parent also and i know that if my son was sufferring from a reaction caused by medication i would be getting in touch and i also would not be happy at the docs prescribing something that is clearly not suitable for my child due to the age recommendation given for the prescription of the drug.

I have waffled on a bit here but feel free to contact me if you want to chat.


Rose Marie Cain
PWCF aged 40 and a parent of a 19 yr old son wocf
 
T

ToriMom

Guest
Hi Rose
Thank you for the reply. It feels so comforting to know there are others out there no matter what they say sometimes.
My daughter has had a few good hours where she is feeling like she can walk around, but today was a hard day for her. We have at least seven more days of this, and already I am feeling like I can't do it anymore. I did call the doc, who said give it with food if that helps her tolerate it. Are you advised against taking it with dairy because I noticed that when I gave it to her with her formula (she uses a G-tube) that she felt 200% better. Some web sites say NO DAIRY, and others say it decreases the absorption by only ~5%. Just curious, because I think food also decreses the effectiveness a bit, and with the formula+mino she felt a lot like herself again.
Thanks for listening.
Michelle
 
T

ToriMom

Guest
Hi Rose
Thank you for the reply. It feels so comforting to know there are others out there no matter what they say sometimes.
My daughter has had a few good hours where she is feeling like she can walk around, but today was a hard day for her. We have at least seven more days of this, and already I am feeling like I can't do it anymore. I did call the doc, who said give it with food if that helps her tolerate it. Are you advised against taking it with dairy because I noticed that when I gave it to her with her formula (she uses a G-tube) that she felt 200% better. Some web sites say NO DAIRY, and others say it decreases the absorption by only ~5%. Just curious, because I think food also decreses the effectiveness a bit, and with the formula+mino she felt a lot like herself again.
Thanks for listening.
Michelle
 
T

ToriMom

Guest
Hi Rose
Thank you for the reply. It feels so comforting to know there are others out there no matter what they say sometimes.
My daughter has had a few good hours where she is feeling like she can walk around, but today was a hard day for her. We have at least seven more days of this, and already I am feeling like I can't do it anymore. I did call the doc, who said give it with food if that helps her tolerate it. Are you advised against taking it with dairy because I noticed that when I gave it to her with her formula (she uses a G-tube) that she felt 200% better. Some web sites say NO DAIRY, and others say it decreases the absorption by only ~5%. Just curious, because I think food also decreses the effectiveness a bit, and with the formula+mino she felt a lot like herself again.
Thanks for listening.
Michelle
 
I

Icklerose

New member
Anytime at all michelle i just hope your little one feels better soon and if she is tolerating the meds the way you give her them then i would go with it <img src="i/expressions/face-icon-small-smile.gif" border="0"> after all the recommendations dont' seem to matter at the moment do they? as long as she gets well on it <img src="i/expressions/face-icon-small-smile.gif" border="0">

good luck and big hugs to ya

Rose Marie
 
I

Icklerose

New member
Anytime at all michelle i just hope your little one feels better soon and if she is tolerating the meds the way you give her them then i would go with it <img src="i/expressions/face-icon-small-smile.gif" border="0"> after all the recommendations dont' seem to matter at the moment do they? as long as she gets well on it <img src="i/expressions/face-icon-small-smile.gif" border="0">

good luck and big hugs to ya

Rose Marie
 
I

Icklerose

New member
Anytime at all michelle i just hope your little one feels better soon and if she is tolerating the meds the way you give her them then i would go with it <img src="i/expressions/face-icon-small-smile.gif" border="0"> after all the recommendations dont' seem to matter at the moment do they? as long as she gets well on it <img src="i/expressions/face-icon-small-smile.gif" border="0">

good luck and big hugs to ya

Rose Marie
 
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