Help! Back to square 1!

[laure]

Help! Saw Dr. B yesterday, dd9 is 50% better since last visit where she was put on a 14 day prednisone taper and 250 zith, and he thought to add 875 mg 2 x day Augmentin to see if she continues to improve. After only 2 doses, our world fell apart. Last night she began screaming in the shower, got out and could only hop on her right foot all over the house. Everywhere we walked became contaminated too, and things just deteriorated from there. She just sat alone and cried uttering pleas of "why me?" and "I want to die". All this after an amazing 4 weeks of continuing improvement. Could it be the 2 drugs combined? Or just a coincidence?

[kimballot]

EGADS! I'd call Dr. B today. i hope things are looking up for you today. It is hard to know what is going on. Does Dr. B have an idea of what your daughter's underlying infection is that triggered this exacerbation?

[KaraM]

Ditto the recommendation on contacting Dr. B. I heard Stella giving a patient an email address for questions (not sure if that's just for IVIG patients or not). Maybe someone can PM it to you if they have it. although I think he also has an emergency number.

 

Have you tried adding ibuprofin. Did he recommend or discourage that?

 

It could just be a blip on the road to recovery- I think we've all had those. Maybe/hopefully today will be better.

 

I remember those contamination days very well. My heart and thoughts go out to you.

 

Kara

[laure]

Thanks for the quick advice. I just emailed Dr. B. If I can just get her out of the house this morning she might be ok for the day away from this contamination... She was doing so well too, even got dressed up for the first time in 2 months for her appointment with him yesterday. We almost looked like a normal family...

[laure]

EGADS! I'd call Dr. B today. i hope things are looking up for you today. It is hard to know what is going on. Does Dr. B have an idea of what your daughter's underlying infection is that triggered this exacerbation?

[laure]

She had high strep titers in July, and has since responded very well to the steroid taper he gave her 4 weeks ago and the zith. Just added Augmentin yesterday as a final try for total recovery before going to Ivig, which he suspects we will need to do to get rid of the OCD stuff which remained, even as so many other areas had improved.

[AmySLP]

So sorry to hear that she's had a backslide. I hope this is very temporary and that Dr. B will have a solution for you.

[Fixit]

Help! Saw Dr. B yesterday, dd9 is 50% better since last visit where she was put on a 14 day prednisone taper and 250 zith, and he thought to add 875 mg 2 x day Augmentin to see if she continues to improve. After only 2 doses, our world fell apart. Last night she began screaming in the shower, got out and could only hop on her right foot all over the house. Everywhere we walked became contaminated too, and things just deteriorated from there. She just sat alone and cried uttering pleas of "why me?" and "I want to die". All this after an amazing 4 weeks of continuing improvement. Could it be the 2 drugs combined? Or just a coincidence?

 

if your taper is done...you might have a little backslide and then go forward...we had sawtooth while on the taper...

could it be herxing..some things get worse before they get better...maybe the aug is getting something...

are one of you sick, or ill?

Have you been on probiotics....adding aug at hd alone can bring on the yeasties...

i just read something yesterday...that said..i want to get this right and am trying to refind...

yeast either harbors infections or it of itself is an infection or creates infections.....i wish i didn't loose that...

azith for some can also bring on clostridia...we had to deal with that too..

it is essential to keep the gut incheck..it is the second brain

[laure]

Help! Saw Dr. B yesterday, dd9 is 50% better since last visit where she was put on a 14 day prednisone taper and 250 zith, and he thought to add 875 mg 2 x day Augmentin to see if she continues to improve. After only 2 doses, our world fell apart. Last night she began screaming in the shower, got out and could only hop on her right foot all over the house. Everywhere we walked became contaminated too, and things just deteriorated from there. She just sat alone and cried uttering pleas of "why me?" and "I want to die". All this after an amazing 4 weeks of continuing improvement. Could it be the 2 drugs combined? Or just a coincidence?

 

if your taper is done...you might have a little backslide and then go forward...we had sawtooth while on the taper...

could it be herxing..some things get worse before they get better...maybe the aug is getting something...

are one of you sick, or ill?

Have you been on probiotics....adding aug at hd alone can bring on the yeasties...

i just read something yesterday...that said..i want to get this right and am trying to refind...

yeast either harbors infections or it of itself is an infection or creates infections.....i wish i didn't loose that...

azith for some can also bring on clostridia...we had to deal with that too..

it is essential to keep the gut incheck..it is the second brain

[laure]

Called Dr. B, who thought it was a possible indication that lyme or bartonella or some other type of infection could be in the mix too. He put her back on steroid taper (she finished the last one 2 weeks ago) and zith, and quit the Augmentin, b/c it would make her worse if lyme is present. Don't think any of the rest of us are sick. She takes culturelle, doesn't complain about stomach issues too much. The yeast info I read on this site scares me, but Dr. B seems to think she is fine at this point with 2 culturelle pills a day. (and just the 250 zith once a day). What would be the signs of yeast/clostridia?

Just want to say that his office staff and he himself are amazing, really responsive and patient as I gulped and sniffled out my story on the phone. Thank God for people like them!

[Fixit]

Called Dr. B, who thought it was a possible indication that lyme or bartonella or some other type of infection could be in the mix too. He put her back on steroid taper (she finished the last one 2 weeks ago) and zith, and quit the Augmentin, b/c it would make her worse if lyme is present. Don't think any of the rest of us are sick. She takes culturelle, doesn't complain about stomach issues too much. The yeast info I read on this site scares me, but Dr. B seems to think she is fine at this point with 2 culturelle pills a day. (and just the 250 zith once a day). What would be the signs of yeast/clostridia?

Just want to say that his office staff and he himself are amazing, really responsive and patient as I gulped and sniffled out my story on the phone. Thank God for people like them!

 

i personnally think each respond different to yeast...some get silly...like drunk...

if your a bad drunk you would get violent perhaps...

my ds gets screeches

you can look for thrush in the mouth...

a girl would have a yeast infection possibly..

our dan has a couple of things he uses to indicate clostridia...stool samples are best....

and as per discussion with other moms...i think some tests can be worng and when...when you wash, rinse repeat and keep getting the same results(pattern) it would indicate a problem

there is a spit test you can do in morning which migth guide you..

look up spit test candida

[laure]

Called Dr. B, who thought it was a possible indication that lyme or bartonella or some other type of infection could be in the mix too. He put her back on steroid taper (she finished the last one 2 weeks ago) and zith, and quit the Augmentin, b/c it would make her worse if lyme is present. Don't think any of the rest of us are sick. She takes culturelle, doesn't complain about stomach issues too much. The yeast info I read on this site scares me, but Dr. B seems to think she is fine at this point with 2 culturelle pills a day. (and just the 250 zith once a day). What would be the signs of yeast/clostridia?

Just want to say that his office staff and he himself are amazing, really responsive and patient as I gulped and sniffled out my story on the phone. Thank God for people like them!

 

i personnally think each respond different to yeast...some get silly...like drunk...

if your a bad drunk you would get violent perhaps...

my ds gets screeches

you can look for thrush in the mouth...

a girl would have a yeast infection possibly..

our dan has a couple of things he uses to indicate clostridia...stool samples are best....

and as per discussion with other moms...i think some tests can be worng and when...when you wash, rinse repeat and keep getting the same results(pattern) it would indicate a problem

there is a spit test you can do in morning which migth guide you..

look up spit test candida

[laure]

She said she had red in her stool...I didn't get a look at it. Would that indicate yeast?

[Fixit]

She said she had red in her stool...I didn't get a look at it. Would that indicate yeast?

 

Blood!...you need to get her next stool and look at it..if its red take it to a doc...

NOw my kids...if they get food colors(which i don't allow) that is the color of their stool...greens, yellows, red...ask her if she had anything red!!!!!

the stool would need to be sampled for yeast

[T_Mom]

Hi Laure, I am so sorry this is up and down. I can share that we had similar experiences, and I finally have come to the conclusion that I need to step back and look at weekly trends rather then the day to day (which can drive one nuts as it can be so variable.) In our experience, it took about 3 to 4 weeks after the steroids to see some leveling--the ups and downs lessened.

 

May I ask you -- Did you say that Augmentin is said to be a problem if it is Lyme? Could that be right? Do you know anything else about that issue or can you send me any info. For our younger d this could be important--thank you.