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Biaxin successes? And a few other things....


nomoz
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We are switching gears, and, with Dr. T's help, are now going to try Biaxin for our 7 year old daughter. Her micloplasm igg's tested 5 recently -though she no longer tests positive for micoplasm - those antibodies are still very high in her system. Seems the Zithro did not help her - she was so angry and fell apart after returning home from school yesterday - and she raged until she fell asleep. This morning, she did not want to go to school, and it took both my husband and I an hour and a half to get her out the door. Amazingly, she missed an entire week last week, was tested on school work we hadn't gone over (she was very sick last week), and she did extremely well!! And, in school, this child is super super quiet, and very well behaved. Currently my husband and I are battling over whether or not to tell her school about our situation. I think not, as her only red flag there is a high number of absences.

Wow, can this whole thing, when it is flared up, cause problems in a marriage.. Sometimes, I think it would be easier to pull her out of school altogether, and just start small. Other times, I am thankful for her being there, so she can get away from this monster for awhile, and so we all have time to re-group.

Thanks for listening, everyone. And can anyone tell me if they had luck with Biaxin???

Noelle

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We are switching gears, and, with Dr. T's help, are now going to try Biaxin for our 7 year old daughter. Her micloplasm igg's tested 5 recently -though she no longer tests positive for micoplasm - those antibodies are still very high in her system. Seems the Zithro did not help her - she was so angry and fell apart after returning home from school yesterday - and she raged until she fell asleep. This morning, she did not want to go to school, and it took both my husband and I an hour and a half to get her out the door. Amazingly, she missed an entire week last week, was tested on school work we hadn't gone over (she was very sick last week), and she did extremely well!! And, in school, this child is super super quiet, and very well behaved. Currently my husband and I are battling over whether or not to tell her school about our situation. I think not, as her only red flag there is a high number of absences.

Wow, can this whole thing, when it is flared up, cause problems in a marriage.. Sometimes, I think it would be easier to pull her out of school altogether, and just start small. Other times, I am thankful for her being there, so she can get away from this monster for awhile, and so we all have time to re-group.

Thanks for listening, everyone. And can anyone tell me if they had luck with Biaxin???

Noelle

 

Noelle,

 

Don't know about Biaxin, but as far as relationship strrains, of course. PANDAS causes unbelievable stress. Just hearing about your daughter's rage after school made me yell at my wife. Just kidding, but obviously the emotional strain is overwhelming. I think parents of PANDAS kids would benefit more from counseling then the kids themselves. As far as school, we told ours. My son's teacher is great, read 'Saving Sammy' and other PANDAS info and brought up the topic at a staff meeting. He looks out for our son and keeps us posted of any behavioral changes and any strep in class, and gets my son to use the hand sanitizer as often as possible.

 

Back to the Biaxin, good luck. Comparing Dr. Trifiletti to Dr. K, Dr. T seems much slower to go to IVIG where as Dr. K says without IVIG, no PANDAS cure. He says it is necessary to get rid of the autoimmune process causing the problem. I believe Dr T has been tracking some PANDAS case for 10 years or so and I asumme he has seen what he believes are some cures from antibiotics alone. I'd love to hear some examples.

 

Good luck, Alex

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We are on day 3 of Biaxin and we'll keep you updated at time goes by. Dd had a recentl steroid burst so I can't say for sure whether the benefits we are seeing right now are from the prednisone or from the Biaxin or both, but yesterday was better than normal and today she ate her whole breakfast without ever asking me to watch her eat and she ate more than normal. She finds eating difficult because she thinks she chews weird and so I have to watch her chew every bite. It is so stressful that she doesn't often eat much. Today she had two granola bars and a slice of pizza and she ate it without me. MIght be the prednisone but during the last burst chewing was still somewhat of an issue.

 

Please keep me updated as well.

 

Angela

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Alex, lol..... <_<

 

nomez and momaine,

I think you are both looking at and treating the mycoplasma right now, correct? is this what the Biaxin is for? could you refresh me and tell me if your kids are ones who do or don't have strep as definite problem (titers or recurrent positive swab/cultures?).. in other words, is finding the mycoplasma'in addition' to the strep connection? or maybe another peice to the puzzle.... ?

 

thanks

Faith

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We are on Day 3 of Biaxin (generic). I have not noticed anything improve as of yet, but did notice the cough that some were talking about that came with starting the Biaxin. She had a steroid burst at the beginning of the month for 5 days - it virtually got rid of the tics, but now we have them back plus more OCD. I counted yesterday for 5 minutes, then did an average for a minute. I multiplied the number by 60, and if she continued to do them for the full hour she would be making sounds (tics) 240 times an hour and performing some sort of ritual 120 times an hour. I'm hoping the Biaxin kicks in soon, but I also understand that in chronic cases, it can take months to rid the body of the Mycoplasma.

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kcdc,

may I ask the same question of you? is strep a major component of your childs PANDAS? and was the mycoplasma level in addition to that, or just a possible explanation of your child's symtpoms?

 

momaine, you mean normal range in titers, right?

 

thanks

Faith

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kcdc,

may I ask the same question of you? is strep a major component of your childs PANDAS? and was the mycoplasma level in addition to that, or just a possible explanation of your child's symtpoms?

 

momaine, you mean normal range in titers, right?

 

thanks

Faith

 

Sorry yeah, more than 3 times higher than the normal range. Normal is < .9 and she was 2.75.

Angela

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HI, Alex

 

who is dr. K? where are they located?

Where is dr. T Located?

 

Thank you

Lotafaith

 

 

uote name='Alex' date='Feb 23 2010, 10:45 AM' post='57203']

We are switching gears, and, with Dr. T's help, are now going to try Biaxin for our 7 year old daughter. Her micloplasm igg's tested 5 recently -though she no longer tests positive for micoplasm - those antibodies are still very high in her system. Seems the Zithro did not help her - she was so angry and fell apart after returning home from school yesterday - and she raged until she fell asleep. This morning, she did not want to go to school, and it took both my husband and I an hour and a half to get her out the door. Amazingly, she missed an entire week last week, was tested on school work we hadn't gone over (she was very sick last week), and she did extremely well!! And, in school, this child is super super quiet, and very well behaved. Currently my husband and I are battling over whether or not to tell her school about our situation. I think not, as her only red flag there is a high number of absences.

Wow, can this whole thing, when it is flared up, cause problems in a marriage.. Sometimes, I think it would be easier to pull her out of school altogether, and just start small. Other times, I am thankful for her being there, so she can get away from this monster for awhile, and so we all have time to re-group.

Thanks for listening, everyone. And can anyone tell me if they had luck with Biaxin???

Noelle

 

Noelle,

 

Don't know about Biaxin, but as far as relationship strrains, of course. PANDAS causes unbelievable stress. Just hearing about your daughter's rage after school made me yell at my wife. Just kidding, but obviously the emotional strain is overwhelming. I think parents of PANDAS kids would benefit more from counseling then the kids themselves. As far as school, we told ours. My son's teacher is great, read 'Saving Sammy' and other PANDAS info and brought up the topic at a staff meeting. He looks out for our son and keeps us posted of any behavioral changes and any strep in class, and gets my son to use the hand sanitizer as often as possible.

 

Back to the Biaxin, good luck. Comparing Dr. Trifiletti to Dr. K, Dr. T seems much slower to go to IVIG where as Dr. K says without IVIG, no PANDAS cure. He says it is necessary to get rid of the autoimmune process causing the problem. I believe Dr T has been tracking some PANDAS case for 10 years or so and I asumme he has seen what he believes are some cures from antibiotics alone. I'd love to hear some examples.

 

Good luck, Alex

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I'm hoping the Biaxin kicks in soon, but I also understand that in chronic cases, it can take months to rid the body of the Mycoplasma.

 

 

is that per the link somene sent that said 2 months of doxiliojgsfnd/something or did dr k or t mention that? or somewhere else?

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kcdc,

may I ask the same question of you? is strep a major component of your childs PANDAS? and was the mycoplasma level in addition to that, or just a possible explanation of your child's symtpoms?

 

momaine, you mean normal range in titers, right?

 

thanks

Faith

 

Hard to tell - her strep titers have been normal in the past (except with the last confirmed case of strep in July where she developed the tics and did not have any strep symptoms). Dr. T mentioned something about Prevnar vaccine may have something to do with them staying low? Not sure, confused about that. The Mycoplasma was a complete surprise - but my dd seems to react to any kind of virus. Not sure what triggered the PANDAS - whether it was an undiagnosed strep or the Mycoplasma.

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Alex, lol..... ^_^

 

nomez and momaine,

I think you are both looking at and treating the mycoplasma right now, correct? is this what the Biaxin is for? could you refresh me and tell me if your kids are ones who do or don't have strep as definite problem (titers or recurrent positive swab/cultures?).. in other words, is finding the mycoplasma'in addition' to the strep connection? or maybe another peice to the puzzle.... ?

 

thanks

Faith

Hi Faith.

You are right. We are treating mycoplasm. Strep throat culture negative, but titers slightly elevated @ 200. Mycoplasm can apparently set this whole PANDAS phenomenon in motion, too.

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