Update on Dd..and we saw Dr. Trifiletti Wedneday

[Debbie1]

edited

[momaine]

We just added zith to augmentin on Monday. I stopped the aug. today though....bad tummy/yeast (down there) problems.

 

 

Are you giving probiotics daily in between doses of Antibiotics?

[peglem]

We just added zith to augmentin on Monday. I stopped the aug. today though....bad tummy/yeast (down there) problems.

 

 

Are you giving probiotics daily in between doses of Antibiotics?

Lots of probiotics and yogurt (too bad I didn't buy stock in Yoplait) + antifungals. I've just got her on the zith now. 2 days off the augmentin and the yeast has drastically improved. I don't know if it does the same to others- the yeast flared earlier, when she was still on the rifampin+augmentin, then we treated with diflucan after finishing the rifampin. Stayed on the augmentin, could not get the yeast to clear. When we added the zith on Monday, we were supposed to wait until Sunday to stop augmentin. So I guess I quit a few days early.

[fuelforall]

Angela

Really a steroid burst, maybe a good 30 days might give you good relief. I would call Dr T (even page him!) And get him to call it in for you. You sound like you are really struggling. Advil might help in a pinch but you need something stronger.

 

 

Anyone got Dr T's beeper number? We are in desperate straits. Dr. T is becoming like Dr. L, not very quick on the trigger with callbacks and emails. Write me directly if need be.

Michael

[momaine]

Lots of probiotics and yogurt (too bad I didn't buy stock in Yoplait) + antifungals. I've just got her on the zith now. 2 days off the augmentin and the yeast has drastically improved. I don't know if it does the same to others- the yeast flared earlier, when she was still on the rifampin+augmentin, then we treated with diflucan after finishing the rifampin. Stayed on the augmentin, could not get the yeast to clear. When we added the zith on Monday, we were supposed to wait until Sunday to stop augmentin. So I guess I quit a few days early.

 

Are the antifungals you are using just topical that you buy at the grocery store? I've had dd put Monistat one day treatment that comes in an applicator tube (we just squeezed it out and applied it by hand) on the rash on her bottom. Is your child's rash vaginal or just on the external skin? I've read somewhere that on the skin you can also use althete's foot antifungal.

 

Angela

[thereishope]

Stoneyfield Farm also makes a yogurt with probiotics, It's sold in a 4 pack. Has anyone tried that? I get nervous trying different ones since my kdis will only eat thicker yogurt that doesn't need to be stirred.

[peglem]

Lots of probiotics and yogurt (too bad I didn't buy stock in Yoplait) + antifungals. I've just got her on the zith now. 2 days off the augmentin and the yeast has drastically improved. I don't know if it does the same to others- the yeast flared earlier, when she was still on the rifampin+augmentin, then we treated with diflucan after finishing the rifampin. Stayed on the augmentin, could not get the yeast to clear. When we added the zith on Monday, we were supposed to wait until Sunday to stop augmentin. So I guess I quit a few days early.

 

Are the antifungals you are using just topical that you buy at the grocery store? I've had dd put Monistat one day treatment that comes in an applicator tube (we just squeezed it out and applied it by hand) on the rash on her bottom. Is your child's rash vaginal or just on the external skin? I've read somewhere that on the skin you can also use althete's foot antifungal.

 

Angela

She's been on oral Nystatin for at least a year. Then I was giving her probiotics in between the abx dosing. Once the vaginal yeast showed up, I started giving probiotics @ every 2 hours. The vaginal swab came up positive for yeast (only, was neg for bacteria). Was prescribed monostat topically until rifampin was finished.(2 more days). Then a single dose of diflucan, plus continuing monostat. (diflucan is weekly dosing). The yeast still didn't clear up. Did another diflucan the following week....still did not clear up. Once I stopped the augmentin and did one more diflucan, it finally cleared.

[faith]

We just added zith to augmentin on Monday. I stopped the aug. today though....bad tummy/yeast (down there) problems.

 

 

Are you giving probiotics daily in between doses of Antibiotics?

Lots of probiotics and yogurt (too bad I didn't buy stock in Yoplait) + antifungals. I've just got her on the zith now. 2 days off the augmentin and the yeast has drastically improved. I don't know if it does the same to others- the yeast flared earlier, when she was still on the rifampin+augmentin, then we treated with diflucan after finishing the rifampin. Stayed on the augmentin, could not get the yeast to clear. When we added the zith on Monday, we were supposed to wait until Sunday to stop augmentin. So I guess I quit a few days early.

 

 

peg,

sorry, could you clarify your above post. what did you mean by going off augmentin and the yeast cleared in two days? is that possible, just by being off antibiotics? or was it treatment with diflucan? is that what you meant?

and what is rifampin and what does it do? thanks.

 

EDIT: oh, I see by your above reply to Angela that you may be talking about vaginal yeast? oh, then I can see the symptoms can be monitored, but are you also talking of gut yeast?

 

Also, when you went off the augmentin, did any symptoms come back, or stay the same, or did you go o another abx?

 

 

Faith

[peglem]

We just added zith to augmentin on Monday. I stopped the aug. today though....bad tummy/yeast (down there) problems.

 

 

Are you giving probiotics daily in between doses of Antibiotics?

Lots of probiotics and yogurt (too bad I didn't buy stock in Yoplait) + antifungals. I've just got her on the zith now. 2 days off the augmentin and the yeast has drastically improved. I don't know if it does the same to others- the yeast flared earlier, when she was still on the rifampin+augmentin, then we treated with diflucan after finishing the rifampin. Stayed on the augmentin, could not get the yeast to clear. When we added the zith on Monday, we were supposed to wait until Sunday to stop augmentin. So I guess I quit a few days early.

 

 

peg,

sorry, could you clarify your above post. what did you mean by going off augmentin and the yeast cleared in two days? is that possible, just by being off antibiotics? or was it treatment with diflucan? is that what you meant?

and what is rifampin and what does it do? thanks.

 

EDIT: oh, I see by your above reply to Angela that you may be talking about vaginal yeast? oh, then I can see the symptoms can be monitored, but are you also talking of gut yeast?

 

Also, when you went off the augmentin, did any symptoms come back, or stay the same, or did you go o another abx?

 

 

Faith

Rifampin is a bacteriocidal abx that works intracellularly, and is usually used for tuberculosis in combo w/ other abx.

We were on the rifampin+875mg 2x/day of augmentin. This for 10 days, after which we stayed on the augmentin. The vag. yeast showed up @ day 8 into the combo, but had to wait til the rifampin was finished to do diflucan, as they cannot be taken together. So, did the diflucan and continued on augmentin. On days 9&10 of the combo, and the day after- despite the yeast, we had 3 very good days of low PANDAS symptoms. Then, still on the augmentin, PANDAS symptoms began to flare again and after a week, I was back in the doc's office begging for rifampin like an abx junkie! What the doctor decided to do (rifampin is dangerous to the liver) is 500mg/day of zith for 5 days, then switch to every other day, and continue the augmentin for another 7 days. I quit the augmentin after 5 days instead- after another dose of diflucan. Things simmered down after that. She's still on 500mg. zith every other day. The yeast is much improved, especially the yeasty behaviors.

[faith]

We just added zith to augmentin on Monday. I stopped the aug. today though....bad tummy/yeast (down there) problems.

 

 

Are you giving probiotics daily in between doses of Antibiotics?

Lots of probiotics and yogurt (too bad I didn't buy stock in Yoplait) + antifungals. I've just got her on the zith now. 2 days off the augmentin and the yeast has drastically improved. I don't know if it does the same to others- the yeast flared earlier, when she was still on the rifampin+augmentin, then we treated with diflucan after finishing the rifampin. Stayed on the augmentin, could not get the yeast to clear. When we added the zith on Monday, we were supposed to wait until Sunday to stop augmentin. So I guess I quit a few days early.

 

 

peg,

sorry, could you clarify your above post. what did you mean by going off augmentin and the yeast cleared in two days? is that possible, just by being off antibiotics? or was it treatment with diflucan? is that what you meant?

and what is rifampin and what does it do? thanks.

 

EDIT: oh, I see by your above reply to Angela that you may be talking about vaginal yeast? oh, then I can see the symptoms can be monitored, but are you also talking of gut yeast?

 

Also, when you went off the augmentin, did any symptoms come back, or stay the same, or did you go o another abx?

 

 

Faith

Rifampin is a bacteriocidal abx that works intracellularly, and is usually used for tuberculosis in combo w/ other abx.

We were on the rifampin+875mg 2x/day of augmentin. This for 10 days, after which we stayed on the augmentin. The vag. yeast showed up @ day 8 into the combo, but had to wait til the rifampin was finished to do diflucan, as they cannot be taken together. So, did the diflucan and continued on augmentin. On days 9&10 of the combo, and the day after- despite the yeast, we had 3 very good days of low PANDAS symptoms. Then, still on the augmentin, PANDAS symptoms began to flare again and after a week, I was back in the doc's office begging for rifampin like an abx junkie! What the doctor decided to do (rifampin is dangerous to the liver) is 500mg/day of zith for 5 days, then switch to every other day, and continue the augmentin for another 7 days. I quit the augmentin after 5 days instead- after another dose of diflucan. Things simmered down after that. She's still on 500mg. zith every other day. The yeast is much improved, especially the yeasty behaviors.

 

 

looking at this kind of makes me think the diflucan was the winner? how is she doing now just on azith?

[peglem]

looking at this kind of makes me think the diflucan was the winner? how is she doing now just on azith?

It may have been the diflucan, but when we were on the diflucan and just the augmentin...the yeast didn't clear. She's doing better now on just the zith.

[HeidiS]

Hi Angela and all.

This is my first post. We have an appointment with Dr. Trifiletti next week. Hard decision on who to go to.

My son Z will be 16 next week. He has been treated for tics for several years now on Clonidine. ADD and OCD were never treated because the meds could cause exacerbated tics. Z presents so "normal" that he was denied a section 504 even when appealed.

 

Last spring our wonderful pediatrician had him tested for strep after some odd behaviors in school occurred. Titers came back elevated and we was started on Penic. which his neurologist took him off of in August. Things seemed good until a couple of weeks ago when grades started falling and some behaviors were odd. Had him tested again and strep titer are again elevated. Neurologist will not treat for PANDAS. The pediatrician said we should find someone to treat the PANDAS.

 

After calling in many favors and speaking to several physicians, it seems that there are only a few folks who truly treat PANDAS. We look forward to the appt next week.

 

P.S. This feels really good to get it out and not feel like a crazy person when talking to friends and school officials who think I'm nuts!

 

-HeidiS

[faith]

heidi,

what is penic? is that a penicilin? how did he do while on that? did you see obvious imrovement? why would the neuro take him off if he's not the one who prescribed it?

 

btw, I understand about presenting normally, but if your son has a diagnosis of tics or ocd or ADD, he is allowed the 504 plan BY LAW. Even if you don't have a formal diagnoses, all you need is a letter from your neuro. And even if these symptoms do not seem to interfere with his school work, it is wise to get it in place, for you never know what the future years bring. I am glad I have it now before he gets into middle school, because I don't want to be playing around with that when all new teachers and principal who doesn't know my son. we need it mostly for the extended time, because he takes alot of time on things due to alot of erasing and going over letters and the anxiety that comes with all that.

 

 

Faith

[thereishope]

Welcome. So upon seeing the titers were still elevated, did the ped at least put him back on antibiotics? If so, which one?

 

Have you tried giving Ibuprofen (advil, motrin)? Some have seen it help ease some PANDAS symtoms and from what I've read from other Dr T patients, he has even asked them at their appt if they have tried it and what the results were. So, something to try before seeing him.

 

 

Hi Angela and all.

This is my first post. We have an appointment with Dr. Trifiletti next week. Hard decision on who to go to.

My son Z will be 16 next week. He has been treated for tics for several years now on Clonidine. ADD and OCD were never treated because the meds could cause exacerbated tics. Z presents so "normal" that he was denied a section 504 even when appealed.

 

Last spring our wonderful pediatrician had him tested for strep after some odd behaviors in school occurred. Titers came back elevated and we was started on Penic. which his neurologist took him off of in August. Things seemed good until a couple of weeks ago when grades started falling and some behaviors were odd. Had him tested again and strep titer are again elevated. Neurologist will not treat for PANDAS. The pediatrician said we should find someone to treat the PANDAS.

 

After calling in many favors and speaking to several physicians, it seems that there are only a few folks who truly treat PANDAS. We look forward to the appt next week.

 

P.S. This feels really good to get it out and not feel like a crazy person when talking to friends and school officials who think I'm nuts!

 

-HeidiS

[ajcire]

Vickie, not sure why I didn't think to maybe try advil with my dd while I am trying to figure things out! Glad you mentioned the advil again!