PANDAS?? Is it safe to share this diagnosis with school??

[Guest guest]

Hi everyone,

My son is having a PANDAS/PANS flare and his mood swings are constant. He is in

a pretty bad shape emotionally and I am worried that he will have anxiety with

tantrums at school. He had a similar milder episode in december but the teacher

was very patient. Now he is going back to school after spring break which he

mostly spent in bed screaming and crying on and off. He has some periods where

he feels better and today finally allowed me to do some therapy and did very

well but it was a short span. He wants to go to school and I am wondering if it

is safe to share with the school that my son is going thru workup for PANS and

is being treated for it. He is in a self-contained class for autism and I want

to know how they would react to this info? I personally feel they shouldn't be

any issues but I am concerned that with all this recent talk about revision of

DSM classification, if it will affect him or not and also once they get a

diagnosis other than autism, are they going to freak out every time he will have

anxiety attack and send him home. I need advise from experienced parents as to

how to deal with school during these days as I am sure he will not be well

behaved in school tomorrow.

is

[Guest guest]

i always say less info better...unless there is something they can do to help your son better with this info?

kids on the spectrum go thru bad periods....that is what i tell people when i find myself beginning to explaining his medical issues

To: mb12valtrex Sent: Monday, April 9, 2012 9:25 PMSubject: PANDAS?? Is it safe to share this diagnosis with school??

Hi everyone,My son is having a PANDAS/PANS flare and his mood swings are constant. He is in a pretty bad shape emotionally and I am worried that he will have anxiety with tantrums at school. He had a similar milder episode in december but the teacher was very patient. Now he is going back to school after spring break which he mostly spent in bed screaming and crying on and off. He has some periods where he feels better and today finally allowed me to do some therapy and did very well but it was a short span. He wants to go to school and I am wondering if it is safe to share with the school that my son is going thru workup for PANS and is being treated for it. He is in a self-contained class for autism and I want to know how they would react to this info? I personally feel they shouldn't be any issues but I am concerned that with all this recent talk about revision of DSM classification, if it will affect him or not and also once they get a

diagnosis other than autism, are they going to freak out every time he will have anxiety attack and send him home. I need advise from experienced parents as to how to deal with school during these days as I am sure he will not be well behaved in school tomorrow. is

[Guest guest]

is,Don't you say a word. Unless the school nurse has to give him his meds, just keep quiet. If it gets out of hand at school, a simple explanation of "He hasn't been feeling well. The pedi thinks he may have an infection so we're treating him with anitbiotics" is plenty enough. You don't need any trouble from that corner. Your hands are full enough ; )How old is your son? Tom went through this in second grade -soon after he turned 7. That's when I found biomed. I hit him super hard with vitamin c and epsom until I could learn more. I know your guy has a hard time handling supps.I'm so sorry he's going through this. I feel for

you and hope you guys get through this as quickly as possible.Much love and prayers,Tammy To: mb12valtrex Sent: Monday, April 9, 2012 9:25 PM Subject: PANDAS?? Is it safe to share this diagnosis with school??

Hi everyone,

My son is having a PANDAS/PANS flare and his mood swings are constant. He is in a pretty bad shape emotionally and I am worried that he will have anxiety with tantrums at school. He had a similar milder episode in december but the teacher was very patient. Now he is going back to school after spring break which he mostly spent in bed screaming and crying on and off. He has some periods where he feels better and today finally allowed me to do some therapy and did very well but it was a short span. He wants to go to school and I am wondering if it is safe to share with the school that my son is going thru workup for PANS and is being treated for it. He is in a self-contained class for autism and I want to know how they would react to this info? I personally feel they shouldn't be any issues but I am concerned that with all this recent talk about revision of DSM classification, if it will affect him or not and also once they get a diagnosis other than

autism, are they going to freak out every time he will have anxiety attack and send him home. I need advise from experienced parents as to how to deal with school during these days as I am sure he will not be well behaved in school tomorrow.

is

[Guest guest]

From my experience I would not tell them,they won't understand ,they may either think you are delusional thinking autism has anything to do with being a medical issue or accept what you say but not fully understand it and think that he contagious and not want him at school. I have learned not to tell them any thing at school even though it breaks my heart knowing that it is a medical issue that is causing him to have a bad day.hope he is feeling better soonLet your email find you with BlackBerry® from VodafoneSender: mb12valtrex Date: Tue, 10 Apr 2012 01:25:19 -0000To: <mb12valtrex >ReplyTo: mb12valtrex Subject: PANDAS?? Is it safe to share this diagnosis with school?? Hi everyone,My son is having a PANDAS/PANS flare and his mood swings are constant. He is in a pretty bad shape emotionally and I am worried that he will have anxiety with tantrums at school. He had a similar milder episode in december but the teacher was very patient. Now he is going back to school after spring break which he mostly spent in bed screaming and crying on and off. He has some periods where he feels better and today finally allowed me to do some therapy and did very well but it was a short span. He wants to go to school and I am wondering if it is safe to share with the school that my son is going thru workup for PANS and is being treated for it. He is in a self-contained class for autism and I want to know how they would react to this info? I personally feel they shouldn't be any issues but I am concerned that with all this recent talk about revision of DSM classification, if it will affect him or not and also once they get a diagnosis other than autism, are they going to freak out every time he will have anxiety attack and send him home. I need advise from experienced parents as to how to deal with school during these days as I am sure he will not be well behaved in school tomorrow. is

[Guest guest]

Thanks everyone. I thought that Pandas is accepted my medical community now and

it is taken seriously. My pediatrician didn't hesitate to order any blood work

and agreed with me that my son has pandas/pans. This is so frustrating that we

cannot share anything with the school when our kids spend most of the day at

school. My son never had this severe symptoms before. Don't know if gcmaf has

anything to do with it. Symptoms were better with advil but now my son has

heartburn and stomach ache which could be ulcer/esophagitis or a symptoms of

pandas. Zantac didn't help much. Tried first dose of Holy basil with dinner

tonight. Too soon to say if it is working or not. He had the worst tantrum of

his life just few minutes ago where he was screaming, crying, head banging on

the bed, extremely anxious and the trigger was possibly the fact that his dan

was trying to open a new bottle of activated charcoal. My son has a very bad

history of reflux and with all this burping, stomach ache, heartburn and loss of

appetite, I don't feel comfortable using any NSAIDs as all of them have the

potential to worsen ulcers, even the dexibuprofen. He needs to see a

Gastroenterologist. But in the meantime I need to use something to reduce

inflammation that comes with pandas. I added back curcumin which helped a bit.

Steroid burst is also dangerous if we are suspecting ulcer. Before we go to the

IVIG which we can simply not afford and pretty sure will not be covered by

insurance, I want to try some alternate supp/med to reduce inflammation. Any

help would be appreciated.

Thanks

is

>

> From my experience I would not tell them,they won't understand ,they may

either think you are delusional thinking autism has anything to do with being a

medical issue or accept what you say but not fully understand it and think that

he contagious and not want him at school. I have learned not to tell them any

thing at school even though it breaks my heart knowing that it is a medical

issue that is causing him to have a bad day.hope he is feeling better soon

>

>

> Let your email find you with BlackBerry® from Vodafone

>

> PANDAS?? Is it safe to share this diagnosis with

school??

>

> Hi everyone,

>

> My son is having a PANDAS/PANS flare and his mood swings are constant. He is

in a pretty bad shape emotionally and I am worried that he will have anxiety

with tantrums at school. He had a similar milder episode in december but the

teacher was very patient. Now he is going back to school after spring break

which he mostly spent in bed screaming and crying on and off. He has some

periods where he feels better and today finally allowed me to do some therapy

and did very well but it was a short span. He wants to go to school and I am

wondering if it is safe to share with the school that my son is going thru

workup for PANS and is being treated for it. He is in a self-contained class for

autism and I want to know how they would react to this info? I personally feel

they shouldn't be any issues but I am concerned that with all this recent talk

about revision of DSM classification, if it will affect him or not and also once

they get a diagnosis other than autism, are they going to freak out every time

he will have anxiety attack and send him home. I need advise from experienced

parents as to how to deal with school during these days as I am sure he will not

be well behaved in school tomorrow.

>

> is

>

[Guest guest]

My son had great results with St. s Wort for reducing inflammation which also decreased anxiety.

To: mb12valtrex Sent: Monday, April 9, 2012 7:28 PMSubject: Re: PANDAS?? Is it safe to share this diagnosis with school??

Thanks everyone. I thought that Pandas is accepted my medical community now and it is taken seriously. My pediatrician didn't hesitate to order any blood work and agreed with me that my son has pandas/pans. This is so frustrating that we cannot share anything with the school when our kids spend most of the day at school. My son never had this severe symptoms before. Don't know if gcmaf has anything to do with it. Symptoms were better with advil but now my son has heartburn and stomach ache which could be ulcer/esophagitis or a symptoms of pandas. Zantac didn't help much. Tried first dose of Holy basil with dinner tonight. Too soon to say if it is working or not. He had the worst tantrum of his life just few minutes ago where he was screaming, crying, head banging on the bed, extremely anxious and the trigger was possibly the fact that his dan was trying to open a new bottle of activated charcoal. My son has a very bad history of reflux and with all

this burping, stomach ache, heartburn and loss of appetite, I don't feel comfortable using any NSAIDs as all of them have the potential to worsen ulcers, even the dexibuprofen. He needs to see a Gastroenterologist. But in the meantime I need to use something to reduce inflammation that comes with pandas. I added back curcumin which helped a bit. Steroid burst is also dangerous if we are suspecting ulcer. Before we go to the IVIG which we can simply not afford and pretty sure will not be covered by insurance, I want to try some alternate supp/med to reduce inflammation. Any help would be appreciated. Thanksis>> From my experience I would not tell them,they won't understand ,they may either think you are delusional thinking autism has

anything to do with being a medical issue or accept what you say but not fully understand it and think that he contagious and not want him at school. I have learned not to tell them any thing at school even though it breaks my heart knowing that it is a medical issue that is causing him to have a bad day.hope he is feeling better soon> > > Let your email find you with BlackBerry® from Vodafone> > PANDAS?? Is it safe to share this diagnosis with school??> > Hi everyone,> > My son is having a PANDAS/PANS flare and his mood swings are constant. He is in a pretty bad shape emotionally and I am worried that he will have anxiety with tantrums at school. He had a similar milder episode in december but the teacher was very patient. Now he is going back to school after spring break which he mostly spent in bed screaming and crying on and off. He has some periods where he feels better and today finally allowed me to do some therapy and did very well but it was a short span. He wants to go to school and I am wondering if it is safe to share with the school that my son is going thru workup for PANS and is being treated for it. He is in a self-contained

class for autism and I want to know how they would react to this info? I personally feel they shouldn't be any issues but I am concerned that with all this recent talk about revision of DSM classification, if it will affect him or not and also once they get a diagnosis other than autism, are they going to freak out every time he will have anxiety attack and send him home. I need advise from experienced parents as to how to deal with school during these days as I am sure he will not be well behaved in school tomorrow. > > is>

[Guest guest]

is - we have shared our diagnosis and information with our school. But my son does not go to a public school. For us, telling had been the. Est thing and they have been very supportive. It also has helped that it is medical - it is more concrete and they seem to understand that. I think the advice to start with the explanation that he has an infection is a good one. As you get some more definition around PANDAS as it relates to your son, you can decide if you need to share more. At that point your doc can just write a letter stating that this is a medical condition that is in addition. Yogis autism. That way they won't try to replace the one with the other. HTH, Ruth Sent from my iPhone

Thanks everyone. I thought that Pandas is accepted my medical community now and it is taken seriously. My pediatrician didn't hesitate to order any blood work and agreed with me that my son has pandas/pans. This is so frustrating that we cannot share anything with the school when our kids spend most of the day at school. My son never had this severe symptoms before. Don't know if gcmaf has anything to do with it. Symptoms were better with advil but now my son has heartburn and stomach ache which could be ulcer/esophagitis or a symptoms of pandas. Zantac didn't help much. Tried first dose of Holy basil with dinner tonight. Too soon to say if it is working or not. He had the worst tantrum of his life just few minutes ago where he was screaming, crying, head banging on the bed, extremely anxious and the trigger was possibly the fact that his dan was trying to open a new bottle of activated charcoal. My son has a very bad history of reflux and with all this burping, stomach ache, heartburn and loss of appetite, I don't feel comfortable using any NSAIDs as all of them have the potential to worsen ulcers, even the dexibuprofen. He needs to see a Gastroenterologist. But in the meantime I need to use something to reduce inflammation that comes with pandas. I added back curcumin which helped a bit. Steroid burst is also dangerous if we are suspecting ulcer. Before we go to the IVIG which we can simply not afford and pretty sure will not be covered by insurance, I want to try some alternate supp/med to reduce inflammation. Any help would be appreciated.

Thanks

is

>

> From my experience I would not tell them,they won't understand ,they may either think you are delusional thinking autism has anything to do with being a medical issue or accept what you say but not fully understand it and think that he contagious and not want him at school. I have learned not to tell them any thing at school even though it breaks my heart knowing that it is a medical issue that is causing him to have a bad day.hope he is feeling better soon

>

>

> Let your email find you with BlackBerry® from Vodafone

>

> PANDAS?? Is it safe to share this diagnosis with school??

>

> Hi everyone,

>

> My son is having a PANDAS/PANS flare and his mood swings are constant. He is in a pretty bad shape emotionally and I am worried that he will have anxiety with tantrums at school. He had a similar milder episode in december but the teacher was very patient. Now he is going back to school after spring break which he mostly spent in bed screaming and crying on and off. He has some periods where he feels better and today finally allowed me to do some therapy and did very well but it was a short span. He wants to go to school and I am wondering if it is safe to share with the school that my son is going thru workup for PANS and is being treated for it. He is in a self-contained class for autism and I want to know how they would react to this info? I personally feel they shouldn't be any issues but I am concerned that with all this recent talk about revision of DSM classification, if it will affect him or not and also once they get a diagnosis other than autism, are they going to freak out every time he will have anxiety attack and send him home. I need advise from experienced parents as to how to deal with school during these days as I am sure he will not be well behaved in school tomorrow.

>

> is

>

[Guest guest]

I always reconsider all my supps therapy when my son is not getting better...i have a rule that if i dont see some positive changes and only bad reactions I stop what im doin.

stop all grains easy mild foods...veggie soups

for my son the things that helped immensly with anxiety were neuroprotek and phosphoserine together.

5htp and theonine. valerian liquid five dropperfuls.

for inflammation also neuroprotek . cooper sebecate (calming as well)apparently infammation eats up copper.. frankencense essentail oil by young oils. they sell the edible oils. i use nine drops every four hours or as needed.

also my absolute favorite is something called the orgone zapper. it is something that uses magnetic radio waves of some sort...i would have to look at the website again to explain exactly but this stuff is great for inflammation, very healing to the body...

but it wont work if there is massive bacteria infection or severe food infraction ect or bad supp reaction...what i mean is it is a great tool but not miracle worker.

all these things i did only one or two at a time. when one stopped working i went to the next. oh except for orgone zapper i use that as much as possible.

channa

To: mb12valtrex Sent: Monday, April 9, 2012 10:28 PMSubject: Re: PANDAS?? Is it safe to share this diagnosis with school??

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[Guest guest]

Hi is,What about LDN? I am pretty sure this has helped my son's inflammation and it is transdermal so no gut upsets. My son has a really bad gut too (but his reflux doesnt sound as bad) so whenever i can find something that bypasses the gut i go for it. I think i sent you the study that showed inflammation coming down for crohns patients on LDN? In our recent zyto with MP, he said that my son had ulcerative colitis and an ulcer had previously burst. I am still thinking chrons is a possibility since his tummy seems to hurt all the time too.....anyway, I am attributing my son's much improved language/social skills to LDN (and possibly memory and auditory processing). His stool has been pretty good too. He had a great first week

or two on it but then had a yeast flare that we were able to control with herbals (again i think the LDN helped here in allowing us to use herbals on a limited basis). He was doing pretty well again for a couple weeks until his most recent flu and now another yeast flare. Overall, though, I am finding LDN to be a really big winner for us. May be a possibility for your son?cheers,megan To: mb12valtrex Sent: Monday, April 9, 2012 10:28 PM Subject: Re: PANDAS?? Is it safe to share this diagnosis with school??

Thanks everyone. I thought that Pandas is accepted my medical community now and it is taken seriously. My pediatrician didn't hesitate to order any blood work and agreed with me that my son has pandas/pans. This is so frustrating that we cannot share anything with the school when our kids spend most of the day at school. My son never had this severe symptoms before. Don't know if gcmaf has anything to do with it. Symptoms were better with advil but now my son has heartburn and stomach ache which could be ulcer/esophagitis or a symptoms of pandas. Zantac didn't help much. Tried first dose of Holy basil with dinner tonight. Too soon to say if it is working or not. He had the worst tantrum of his life just few minutes ago where he was screaming, crying, head banging on the bed, extremely anxious and the trigger was possibly the fact that his dan was trying to open a new bottle of activated charcoal. My son has a very bad history of reflux and

with all this burping, stomach ache, heartburn and loss of appetite, I don't feel comfortable using any NSAIDs as all of them have the potential to worsen ulcers, even the dexibuprofen. He needs to see a Gastroenterologist. But in the meantime I need to use something to reduce inflammation that comes with pandas. I added back curcumin which helped a bit. Steroid burst is also dangerous if we are suspecting ulcer. Before we go to the IVIG which we can simply not afford and pretty sure will not be covered by insurance, I want to try some alternate supp/med to reduce inflammation. Any help would be appreciated.

Thanks

is

>

> From my experience I would not tell them,they won't understand ,they may either think you are delusional thinking autism has anything to do with being a medical issue or accept what you say but not fully understand it and think that he contagious and not want him at school. I have learned not to tell them any thing at school even though it breaks my heart knowing that it is a medical issue that is causing him to have a bad day.hope he is feeling better soon

>

>

> Let your email find you with BlackBerry® from Vodafone

>

> PANDAS?? Is it safe to share this diagnosis with school??

>

> Hi everyone,

>

> My son is having a PANDAS/PANS flare and his mood swings are constant. He is in a pretty bad shape emotionally and I am worried that he will have anxiety with tantrums at school. He had a similar milder episode in december but the teacher was very patient. Now he is going back to school after spring break which he mostly spent in bed screaming and crying on and off. He has some periods where he feels better and today finally allowed me to do some therapy and did very well but it was a short span. He wants to go to school and I am wondering if it is safe to share with the school that my son is going thru workup for PANS and is being treated for it. He is in a self-contained class for autism and I want to know how they would react to this info? I personally feel they shouldn't be any issues but I am concerned that with all this recent talk about revision of DSM classification, if it will affect him or not and also once they get a diagnosis other than

autism, are they going to freak out every time he will have anxiety attack and send him home. I need advise from experienced parents as to how to deal with school during these days as I am sure he will not be well behaved in school tomorrow.

>

> is

>

[Guest guest]

My son had (and on rare occasion still has) the gut symptoms you describe...cavernous belching, reflux so bad that he'd wake in the morning with a brown/black tongue. It was awful! He, too, is an advil responder and we also had to juggle use of that against his stomach symptoms which in themselves became yet another anxiety trigger. He's a good responder to NeuroProtek (started in July) after not responding much at all to Enhansa in our fight against inflammation. Activated charcoal worked pretty well but that was tough to dose daily and keep away from other supps. Daily keifer and probiotics seemed to be helpful in simply helping to right his very un-right system. He is 18 now, non-asd kid and we have lived through 3 massive PANDAS/PANS exacerbations and a handful of more mild but obvious flares in the last decade. In our case

each exacerbation takes 18-24 mos to recover from with the first 6 months being the ones that I'm sure each time we won't survive. He's old enough now and maintains too much sugar "trips my gut" so he self moderates his intake. He eats a very clean diet compared to his peers and that helps too. NeuroProtek is expensive but may be worth looking into. We had reason to believe within about 8 wks on it that he was responding when he sailed through ragweed season completely unaffected. We're just starting to examine the possibility of abdominal migraine as well...and looking at the symptom cluster and course of episode, I wouldn't be at all surprised if that isn't the source of the incredible gut pain which now happens once ever couple months versus almost every day during the dark time. Bless us all,Gayle To: mb12valtrex Sent: Monday, April 9, 2012 10:28 PM Subject: Re: PANDAS?? Is it safe to share this diagnosis with school??

Thanks everyone. I thought that Pandas is accepted my medical community now and it is taken seriously. My pediatrician didn't hesitate to order any blood work and agreed with me that my son has pandas/pans. This is so frustrating that we cannot share anything with the school when our kids spend most of the day at school. My son never had this severe symptoms before. Don't know if gcmaf has anything to do with it. Symptoms were better with advil but now my son has heartburn and stomach ache which could be ulcer/esophagitis or a symptoms of pandas. Zantac didn't help much. Tried first dose of Holy basil with dinner tonight. Too soon to say if it is working or not. He had the worst tantrum of his life just few minutes ago where he was screaming, crying, head banging on the bed, extremely anxious and the trigger was possibly the fact that his dan was trying to open a new bottle of activated charcoal. My son has a very bad history of reflux and

with all this burping, stomach ache, heartburn and loss of appetite, I don't feel comfortable using any NSAIDs as all of them have the potential to worsen ulcers, even the dexibuprofen. He needs to see a Gastroenterologist. But in the meantime I need to use something to reduce inflammation that comes with pandas. I added back curcumin which helped a bit. Steroid burst is also dangerous if we are suspecting ulcer. Before we go to the IVIG which we can simply not afford and pretty sure will not be covered by insurance, I want to try some alternate supp/med to reduce inflammation. Any help would be appreciated.

Thanks

is

>

> From my experience I would not tell them,they won't understand ,they may either think you are delusional thinking autism has anything to do with being a medical issue or accept what you say but not fully understand it and think that he contagious and not want him at school. I have learned not to tell them any thing at school even though it breaks my heart knowing that it is a medical issue that is causing him to have a bad day.hope he is feeling better soon

>

>

> Let your email find you with BlackBerry® from Vodafone

>

> PANDAS?? Is it safe to share this diagnosis with school??

>

> Hi everyone,

>

> My son is having a PANDAS/PANS flare and his mood swings are constant. He is in a pretty bad shape emotionally and I am worried that he will have anxiety with tantrums at school. He had a similar milder episode in december but the teacher was very patient. Now he is going back to school after spring break which he mostly spent in bed screaming and crying on and off. He has some periods where he feels better and today finally allowed me to do some therapy and did very well but it was a short span. He wants to go to school and I am wondering if it is safe to share with the school that my son is going thru workup for PANS and is being treated for it. He is in a self-contained class for autism and I want to know how they would react to this info? I personally feel they shouldn't be any issues but I am concerned that with all this recent talk about revision of DSM classification, if it will affect him or not and also once they get a diagnosis other than

autism, are they going to freak out every time he will have anxiety attack and send him home. I need advise from experienced parents as to how to deal with school during these days as I am sure he will not be well behaved in school tomorrow.

>

> is

>

[Guest guest]

Thanks ! Great idea. I am calling my dan for LDN tomorrow. Hopefully it

will not be a problem for a child going thru pans flare. I am also going to ask

him about spironolactone as that can be used as an antiinflammatory. I am hoping

that LDN can be added and I will check on the pandas forum also. Is there a

specific dose that you use for your son? Just want to be prepared before calling

dan.

Thanks

is

> >

> > From my experience I would not tell them,they won't understand ,they may

either think you are delusional thinking autism has anything to do with being a

medical issue or accept what you say but not fully understand it and think that

he contagious and not want him at school. I have learned not to tell them any

thing at school even though it breaks my heart knowing that it is a medical

issue that is causing him to have a bad day.hope he is feeling better soon

> >

> >

> > Let your email find you with BlackBerry® from Vodafone

> >

> > PANDAS?? Is it safe to share this diagnosis with

school??

> >

> > Hi everyone,

> >

> > My son is having a PANDAS/PANS flare and his mood swings are constant. He is

in a pretty bad shape emotionally and I am worried that he will have anxiety

with tantrums at school. He had a similar milder episode in december but the

teacher was very patient. Now he is going back to school after spring break

which he mostly spent in bed screaming and crying on and off. He has some

periods where he feels better and today finally allowed me to do some therapy

and did very well but it was a short span. He wants to go to school and I am

wondering if it is safe to share with the school that my son is going thru

workup for PANS and is being treated for it. He is in a self-contained class for

autism and I want to know how they would react to this info? I personally feel

they shouldn't be any issues but I am concerned that with all this recent talk

about revision of DSM classification, if it will affect him or not and also once

they get a diagnosis other than

> autism, are they going to freak out every time he will have anxiety attack

and send him home. I need advise from experienced parents as to how to deal with

school during these days as I am sure he will not be well behaved in school

tomorrow.

> >

> > is

> >

>

[Guest guest]

3mg is the usual starting dose I have read for kids (See ldn autism yahoo group jmc). Since your your son is older you may have to go up higher but I am not sure...either the ldn autism site will have this answer or try the coastal compounding pharmacy in savanah ga - this is where we get our ldn (they started working with jmc to compound for autism kids years ago)...not too expensive either! Hope this works..do keep in mind some kids don't sleep well first week and I have also read some kids start getting sick as the body tries to fix it:s immune system...we have had many more ups than downs on ldn so far (which is unusual for us!). Good luck!-- Sent from my Palm Pre

Thanks ! Great idea. I am calling my dan for LDN tomorrow. Hopefully it will not be a problem for a child going thru pans flare. I am also going to ask him about spironolactone as that can be used as an antiinflammatory. I am hoping that LDN can be added and I will check on the pandas forum also. Is there a specific dose that you use for your son? Just want to be prepared before calling dan.

Thanks

is

> >

> > From my experience I would not tell them,they won't understand ,they may either think you are delusional thinking autism has anything to do with being a medical issue or accept what you say but not fully understand it and think that he contagious and not want him at school. I have learned not to tell them any thing at school even though it breaks my heart knowing that it is a medical issue that is causing him to have a bad day.hope he is feeling better soon

> >

> >

> > Let your email find you with BlackBerry® from Vodafone

> >

> > PANDAS?? Is it safe to share this diagnosis with school??

> >

> > Hi everyone,

> >

> > My son is having a PANDAS/PANS flare and his mood swings are constant. He is in a pretty bad shape emotionally and I am worried that he will have anxiety with tantrums at school. He had a similar milder episode in december but the teacher was very patient. Now he is going back to school after spring break which he mostly spent in bed screaming and crying on and off. He has some periods where he feels better and today finally allowed me to do some therapy and did very well but it was a short span. He wants to go to school and I am wondering if it is safe to share with the school that my son is going thru workup for PANS and is being treated for it. He is in a self-contained class for autism and I want to know how they would react to this info? I personally feel they shouldn't be any issues but I am concerned that with all this recent talk about revision of DSM classification, if it will affect him or not and also once they get a diagnosis other than

> autism, are they going to freak out every time he will have anxiety attack and send him home. I need advise from experienced parents as to how to deal with school during these days as I am sure he will not be well behaved in school tomorrow.

> >

> > is

> >

>

[Guest guest]

Thanks Ruth. I have started working on simple stories/explanations. When I

mentioned possible acid reflux, nurse called to know what med we had started.

Now that he is on zantac, may be I can start from there, then infection and mold

allergy and so on. Will have to get creative with them.

is

> > >

> > > From my experience I would not tell them,they won't understand ,they may

either think you are delusional thinking autism has anything to do with being a

medical issue or accept what you say but not fully understand it and think that

he contagious and not want him at school. I have learned not to tell them any

thing at school even though it breaks my heart knowing that it is a medical

issue that is causing him to have a bad day.hope he is feeling better soon

> > >

> > >

> > > Let your email find you with BlackBerry® from Vodafone

> > >

> > > PANDAS?? Is it safe to share this diagnosis with

school??

> > >

> > > Hi everyone,

> > >

> > > My son is having a PANDAS/PANS flare and his mood swings are constant. He

is in a pretty bad shape emotionally and I am worried that he will have anxiety

with tantrums at school. He had a similar milder episode in december but the

teacher was very patient. Now he is going back to school after spring break

which he mostly spent in bed screaming and crying on and off. He has some

periods where he feels better and today finally allowed me to do some therapy

and did very well but it was a short span. He wants to go to school and I am

wondering if it is safe to share with the school that my son is going thru

workup for PANS and is being treated for it. He is in a self-contained class for

autism and I want to know how they would react to this info? I personally feel

they shouldn't be any issues but I am concerned that with all this recent talk

about revision of DSM classification, if it will affect him or not and also once

they get a diagnosis other than autism, are they going to freak out every time

he will have anxiety attack and send him home. I need advise from experienced

parents as to how to deal with school during these days as I am sure he will not

be well behaved in school tomorrow.

> > >

> > > is

> > >

> >

> >

>

[Guest guest]

Thanks for the ideas Channa, Gayle, and others. St 's wart, neuroprotek,

LDN, and the zapper are all wonderful ideas. I am making a list and discuss with

dan based on his other supps and sensitivities and will start something

tomorrow. Everyone please pray for my kid as he has never been this miserable.

Even appendicitis was something he could handle but right now he is in a very

bad state. I am checking the forum frequently to collect all the ideas. Thanks

again everyone.

is

> >

> > From my experience I would not tell them,they won't understand ,they may

either think you are delusional thinking autism has anything to do with being a

medical issue or accept what you say but not fully understand it and think that

he contagious and not want him at school. I have learned not to tell them any

thing at school even though it breaks my heart knowing that it is a medical

issue that is causing him to have a bad day.hope he is feeling better soon

> >

> >

> > Let your email find you with BlackBerry® from Vodafone

> >

> > PANDAS?? Is it safe to share this diagnosis with

school??

> >

> > Hi everyone,

> >

> > My son is having a PANDAS/PANS flare and his mood swings are constant. He is

in a pretty bad shape emotionally and I am worried that he will have anxiety

with tantrums at school. He had a similar milder episode in december but the

teacher was very patient. Now he is going back to school after spring break

which he mostly spent in bed screaming and crying on and off. He has some

periods where he feels better and today finally allowed me to do some therapy

and did very well but it was a short span. He wants to go to school and I am

wondering if it is safe to share with the school that my son is going thru

workup for PANS and is being treated for it. He is in a self-contained class for

autism and I want to know how they would react to this info? I personally feel

they shouldn't be any issues but I am concerned that with all this recent talk

about revision of DSM classification, if it will affect him or not and also once

they get a diagnosis other than

> autism, are they going to freak out every time he will have anxiety attack

and send him home. I need advise from experienced parents as to how to deal with

school during these days as I am sure he will not be well behaved in school

tomorrow.

> >

> > is

> >

>

[Guest guest]

Hi is,

I don't have a lot to offer you right now, but I will pray for your son and your

family!

This message of yours reminded me that your son had appendicitis. I also had

appendicitis in March of 2010. I won't go into my details, but I do feel that I

have had a decline in health since then, including gastro issues. I do know I

have thyroid issues (which are currently being investigated), but I had a MAJOR

improvement when I had to take Cipro for something else recently. That made me

do some investigating. Here is what I found:

This study shows that the recurrence rate of SIBO (small intestine bacterial

overgrowth) is high after antibiotic treatment - so while antibiotics help, the

recurrence is highly likely. But what caught my eye is that SIBO recurrence is

associated with a history of appendectomy (and PPIs which you might want to know

if you are dealing with reflux.)

http://www.ncbi.nlm.nih.gov/pubmed?term=SIBO%20appendectomy

Here's an article discussing it:

http://www.medscape.com/viewarticle/579303_4

Regarding appendectomy, it says:

" In the present study, we assessed some common clinical disorders potentially

associated with SIBO development. Older age, appendectomy, and prolonged PPI use

were found to increase GBT positivity recurrence rate. Appendix is a part of

gut-associated lymphoid tissue (GALT). It is a major source of plasma cell

precursors, which migrate specifically to the intestinal lamina propria and it

is the site of initial CD4 T cells activation.[11] Appendectomy markedly reduces

total intestinal plasma cells and immunoglobulins in the animal model.[12] The

appendix could represent a natural immunologic barrier to bacterial

translocation from colon to small bowel. Appendectomy may be responsible for

SIBO recurrence via an impaired mucosal immunity. "

Regarding PPIs it says:

" Failure of the gastric acid barrier, as due to PPI, may result in gastric and

small bowel colonization of swallowed oropharyngeal bacteria.[13] It has been

demonstrated that duodenal colonization occurs in more than half of the subjects

treated with omeprazole.[14] On the basis of literature and present data,

prolonged PPI use seems to represent a predisposing condition to both SIBO

development and recurrence. "

Frustrating, isn't it? I have always heard that we don't need our appendix. I

have never believed it because I am a Christian who believes in a creator God,

so I figure if God put it there, it has a purpose. Yes, it can be removed and

we will survive, but that doesn't mean we don't need it. Anyway - as usual, I

am frustrated with the medical community for not knowing that I am more prone to

SIBO and for not warning me. I have had issues over the last two years that I

have never had before...

Anyway, I thought you might want to know about the link. I will pray for relief

for your little guy and for you and your husband. I will pray for wisdom and

guidance on your part.

Blessings,

Cathy

>

> Everyone please pray for my kid as he has never been this miserable. Even

appendicitis was something he could handle but right now he is in a very bad

state. I am checking the forum frequently to collect all the ideas. Thanks again

everyone.

>

> is

>

[Guest guest]

is,

If I were you I were and it were my son I would go to the basics. I would not give any grains as these are proven to cause inflammation in the body in kids with immune issues.

Even if you did the GAPS or whatever version of the no grain diet for just a couple weeks till his body calmed down. I think it would be worth a trial.

If it were me I would cut out one by one the supps. when our kids are doin bad anything can be the culprit...

antiinflammatorys work great but must be in conjunction with the diet.

If he has gut issues reflux ect. you gotta to put as much effort into looking at the diet as the supps/rx you give him.

my son had silent refulx....he would spend hours and hours screaming all night long. He would also scream when i cut out the grains as he was always hungry....i believe now that eating is their way of soothing the reflux.

when my son wkes up in the very rare occasion askin for food....he gets bakin soda instead. and that takes care of the appetite.

of course everything can be harmful if givin to much and i wouldnt give the bakin soda more then once a day.

Just some more ideas....sometimes just havin a dialog with other parents help you come up with your own ideas.

channa

To: mb12valtrex Sent: Tuesday, April 10, 2012 12:04 AMSubject: Re: PANDAS?? Is it safe to share this diagnosis with school??

[Guest guest]

No, I would not say anything, either.

If he is already in a self contained autism class, they should know regressions

happen, and behavior can be unpredictable.

When my daughter was in K, ( regular classroom) we were treating pandas, at

which time I did not know about Lyme, and thought is was all strep related.

Our treating Dr. signed a letter a wrote to get a 504 in place, in case she fell

apart and had to miss school, and also asked for strep notices if strep was

known in the classroom.

The letter was quite excellent (my friend actually wrote it) but explained some

behavioral aspects that may manifest because of this medical illness, and

included a website address in case anyone wanted to learn more.

Well- the school nurses had never heard of it- and were dubious -

I was so vulnerable at that time, emotional- the saving grace was that the

principal's

husband had rheumatic fever as a child, bedridden for a year with it-

and I try to explain pandas to people by saying:

You're familiar with rheumatic fever, right? Strep going rouge in the body,

antibodies start attacking the heart and joints.

Pandas is very similar, strep has gone rouge in the body, creating the wrong

antibodies

but instead of attacking the heart and joints, they are attacking the basal

ganglia part of the brain, causing a specific set of neuro symptoms.

But by God, I hated explaining pandas.

>

> Hi everyone,

>

> My son is having a PANDAS/PANS flare and his mood swings are constant. He is

in a pretty bad shape emotionally and I am worried that he will have anxiety

with tantrums at school. He had a similar milder episode in december but the

teacher was very patient. Now he is going back to school after spring break

which he mostly spent in bed screaming and crying on and off. He has some

periods where he feels better and today finally allowed me to do some therapy

and did very well but it was a short span. He wants to go to school and I am

wondering if it is safe to share with the school that my son is going thru

workup for PANS and is being treated for it. He is in a self-contained class for

autism and I want to know how they would react to this info? I personally feel

they shouldn't be any issues but I am concerned that with all this recent talk

about revision of DSM classification, if it will affect him or not and also once

they get a diagnosis other than autism, are they going to freak out every time

he will have anxiety attack and send him home. I need advise from experienced

parents as to how to deal with school during these days as I am sure he will not

be well behaved in school tomorrow.

>

> is

>

[Guest guest]

Hi ,

I spent last night searching net for how to differentiate pandas symptoms from

clostridia and at the end I was still confused as my son shows signs of both.

Then I woke up this morning and saw your message. Interestingly, our naturopath

has suggested SIBO as my son doesn't do well on probiotics also. Rifaximin and

probiotics and some other meds in the protocol have been studied by Dr Pimental.

The link is:

http://www.ncbi.nlm.nih.gov/pubmed/19243285

I hope this link works. So when I switched to our current dan, we started

curcumin and that really helped with his gut and the pain disappeared and he was

more verbal with a better eye contact. He wanted to wait before focusing on

SIBO. Then after the 5th shot of gcmaf, he had screaming tantrums and complained

of chest pain. At that time, dan treated for clostridia based on symptoms and it

did help. We never really did the SIBO protocol which is helping a lot of

patients with fibromyalgia. My son received the last vanco dose on 03/02/12.

Towards the end of vanco course, his tantrums had returned and I had a feeling

that we were dealing with some other bacteria which was not responding to

vancomycin. And then we were hit with Pandas like symptoms which were totally

different from clostridia. Then he received azithromycin with diflucan and advil

and did much better for a couple of weeks. Last night while digging, I started

reading up on clostridia and still not sure how to differentiate between the

two. Possibly the rage is more with clostridia and pandas makes you more

debilitated and you cannot function at all. My son is dealing with both right

now. We are still waiting for his ASo titers but I have a strong feeling that if

he does have strep, it is in his gut or he has some other gut bug which is the

culprit here.

If you responded to cipro, it is great. But please don't use cipro on a

recurrent basis as it is the antibiotic most commonly associated with

clostridium difficile infection. May be look into the rifaximin protocol

presented by Dr Pimentel at Cedars-Sinai Medical Center.

I agree with you on appendectomy bringing up all this nonsense with bacterial

overgrowth. My husband had appendectomy several years ago and now cannot

tolerate any vegetables and sometimes has to rush to the bathroom even when we

are invited somewhere. My son's gut has never been the same after appendectomy.

Thanks for bringing it up and now I can add SIBO to the current differential.

I also agree with PPIs being related to gut dysbiosis. During my residency, I

followed the trend of our nursing home patients who were being admitted with

CDiff and found out that all of them were on some form of PPIs. That was one

more reason I was so skeptical about using an antacid for my kid as I didn't

want to worsen the gut dysbiosis. But finally I had to use something as he had

genuine pain in the chest and epigastrium and he had just finished using several

weeks of advil and 5 6 doses of celebrex. Zantac ended up giving him diarrhea

and didn't help much with the reflux. Still wanted to avoid PPIs so now I am

giving holy basil a try as suggested by and on the forum. Hope that

holy basil will help him calm down also.

Since my son responded to vancomycin and it doesn't kill lactobacillus, I may

give it another try. I will discuss the SIBO protocol used by Dr Pimental. As

usual your posts are very helpful and make me brainstorm even more. Thanks a lot

for the appendectomy link and it is a good thing as I have to talk to my dan

later today and I will discuss SIBO also.

Luv u girl!

is

> >

> > Everyone please pray for my kid as he has never been this miserable. Even

appendicitis was something he could handle but right now he is in a very bad

state. I am checking the forum frequently to collect all the ideas. Thanks again

everyone.

> >

> > is

> >

>

[Guest guest]

,

I am already having trouble explaining to my family members about strep. When I

mention rheumatic fever, my mother goes on and on about how her brother had it

as a child and when I say that this is something similar, only happening with

the brain this time, she looks at me as if I have gone nuts. My son's class

teacher is very understanding though and she even does the GFCF shopping for my

son whenever they have a party in class. I will explain to her a little bit

about him having episodes of regression. Thank God this year he has been showing

some improvements in academics.

Thanks for sharing.

is

> >

> > Hi everyone,

> >

> > My son is having a PANDAS/PANS flare and his mood swings are constant. He is

in a pretty bad shape emotionally and I am worried that he will have anxiety

with tantrums at school. He had a similar milder episode in december but the

teacher was very patient. Now he is going back to school after spring break

which he mostly spent in bed screaming and crying on and off. He has some

periods where he feels better and today finally allowed me to do some therapy

and did very well but it was a short span. He wants to go to school and I am

wondering if it is safe to share with the school that my son is going thru

workup for PANS and is being treated for it. He is in a self-contained class for

autism and I want to know how they would react to this info? I personally feel

they shouldn't be any issues but I am concerned that with all this recent talk

about revision of DSM classification, if it will affect him or not and also once

they get a diagnosis other than autism, are they going to freak out every time

he will have anxiety attack and send him home. I need advise from experienced

parents as to how to deal with school during these days as I am sure he will not

be well behaved in school tomorrow.

> >

> > is

> >

>

[Guest guest]

I do. My son's IEP says that he has congenital neuro-borrelosis and extensive

food allergies and cannot eat drink or handle food items not provided from home.

The nurse gives him his valtrex and probiotics which she crushes and mixes with

pear juice after lunch every day. I have documented that he has PANDAS and they

are to tell me if they see certain symptoms or if a kid in the class had strep.

Also, he is allowed to refuse math when going through a flare. He is also

allowed to tell his 1:1 that he wants to go home and he is brought to the nurse

and I am called.

Caryn

> >

> > From my experience I would not tell them,they won't understand ,they may

either think you are delusional thinking autism has anything to do with being a

medical issue or accept what you say but not fully understand it and think that

he contagious and not want him at school. I have learned not to tell them any

thing at school even though it breaks my heart knowing that it is a medical

issue that is causing him to have a bad day.hope he is feeling better soon

> >

> >

> > Let your email find you with BlackBerry® from Vodafone

> >

> > PANDAS?? Is it safe to share this diagnosis with

school??

> >

> > Hi everyone,

> >

> > My son is having a PANDAS/PANS flare and his mood swings are constant. He is

in a pretty bad shape emotionally and I am worried that he will have anxiety

with tantrums at school. He had a similar milder episode in december but the

teacher was very patient. Now he is going back to school after spring break

which he mostly spent in bed screaming and crying on and off. He has some

periods where he feels better and today finally allowed me to do some therapy

and did very well but it was a short span. He wants to go to school and I am

wondering if it is safe to share with the school that my son is going thru

workup for PANS and is being treated for it. He is in a self-contained class for

autism and I want to know how they would react to this info? I personally feel

they shouldn't be any issues but I am concerned that with all this recent talk

about revision of DSM classification, if it will affect him or not and also once

they get a diagnosis other than autism, are they going to freak out every time

he will have anxiety attack and send him home. I need advise from experienced

parents as to how to deal with school during these days as I am sure he will not

be well behaved in school tomorrow.

> >

> > is

> >

>

[Guest guest]

Thank you very much for the pubmed study link. Do you know what the SIBO

protocol is (other than the use of rifaximin)? I have no desire to take Cipro

(or any antibiotic) very often, that's for sure. I have been taking probiotics

and have considered maybe doing a modified SCD diet for myself. We were strict

SCD for a year and a half (I did it in support of the rest of my family - I had

no digestive issues back then but figured it wouldn't hurt me.) Until we know

more about my thyroid, it is hard to know if I am having thyroid symptoms or

SIBO symptoms or both. It is interesting that you mention fibromyalgia because

although I don't have fibro, one of the symptoms I have been having is muscle

pain and the cipro greatly improved it.

I totally understand the situation you are in with the PPIs. It is so

frustrating, isn't it? SCD cured my three GERD family members. The three who

were on Prevacid were able to get off it and didn't have to go back to it after

they left SCD. It also cured another child's lactose intolerance, although

after being back on a regular diet for a couple years, she is lactose intolerant

again.

My husband will occasionally get a flare of reflux, but if he takes DGL and

Custom Probiotics it goes away. DGL is used for reflux. My holistic MD also

used it along with myrrh and bismuth to treat my youngest son for h. pylori

infection when he was very young without having to use antibiotics.

Speaking of h. pylori, Dr. Amy Yasko has found that h. pylori might be a very

serious infection in our kids and it may often be in hiding and not show up in

testing. She has a couple videos about it on her site.

Oh, and because I put in a positive about SCD, I also have to say that we did

have some negatives from it. It sometimes seems to have a negative effect on

oral health because of bacterial migration. We also did not know that our

youngest has issues with clearing ammonia. Because he would not eat a lot of

the veggies or fruits on SCD, he was on a fairly high-protein diet despite our

best efforts. Consequently, while he received some benefits from SCD, he also

had some problems because of the ammonia. We now know from his Yasko testing

that he definitely does have a genetic weakness that affects his ability to

clear ammonia.

I hope you got some help from your DAN today!

Cathy

>

> Hi ,

>

> I spent last night searching net for how to differentiate pandas symptoms from

clostridia and at the end I was still confused as my son shows signs of both.

Then I woke up this morning and saw your message. Interestingly, our naturopath

has suggested SIBO as my son doesn't do well on probiotics also. Rifaximin and

probiotics and some other meds in the protocol have been studied by Dr Pimental.

The link is:

>

> http://www.ncbi.nlm.nih.gov/pubmed/19243285

>

> I hope this link works. So when I switched to our current dan, we started

curcumin and that really helped with his gut and the pain disappeared and he was

more verbal with a better eye contact. He wanted to wait before focusing on

SIBO. Then after the 5th shot of gcmaf, he had screaming tantrums and complained

of chest pain. At that time, dan treated for clostridia based on symptoms and it

did help. We never really did the SIBO protocol which is helping a lot of

patients with fibromyalgia. My son received the last vanco dose on 03/02/12.

Towards the end of vanco course, his tantrums had returned and I had a feeling

that we were dealing with some other bacteria which was not responding to

vancomycin. And then we were hit with Pandas like symptoms which were totally

different from clostridia. Then he received azithromycin with diflucan and advil

and did much better for a couple of weeks. Last night while digging, I started

reading up on clostridia and still not sure how to differentiate between the

two. Possibly the rage is more with clostridia and pandas makes you more

debilitated and you cannot function at all. My son is dealing with both right

now. We are still waiting for his ASo titers but I have a strong feeling that if

he does have strep, it is in his gut or he has some other gut bug which is the

culprit here.

>

> If you responded to cipro, it is great. But please don't use cipro on a

recurrent basis as it is the antibiotic most commonly associated with

clostridium difficile infection. May be look into the rifaximin protocol

presented by Dr Pimentel at Cedars-Sinai Medical Center.

>

> I agree with you on appendectomy bringing up all this nonsense with bacterial

overgrowth. My husband had appendectomy several years ago and now cannot

tolerate any vegetables and sometimes has to rush to the bathroom even when we

are invited somewhere. My son's gut has never been the same after appendectomy.

Thanks for bringing it up and now I can add SIBO to the current differential.

>

> I also agree with PPIs being related to gut dysbiosis. During my residency, I

followed the trend of our nursing home patients who were being admitted with

CDiff and found out that all of them were on some form of PPIs. That was one

more reason I was so skeptical about using an antacid for my kid as I didn't

want to worsen the gut dysbiosis. But finally I had to use something as he had

genuine pain in the chest and epigastrium and he had just finished using several

weeks of advil and 5 6 doses of celebrex. Zantac ended up giving him diarrhea

and didn't help much with the reflux. Still wanted to avoid PPIs so now I am

giving holy basil a try as suggested by and on the forum. Hope that

holy basil will help him calm down also.

>

> Since my son responded to vancomycin and it doesn't kill lactobacillus, I may

give it another try. I will discuss the SIBO protocol used by Dr Pimental. As

usual your posts are very helpful and make me brainstorm even more. Thanks a lot

for the appendectomy link and it is a good thing as I have to talk to my dan

later today and I will discuss SIBO also.

>

> Luv u girl!

> is

>

[Guest guest]

Hi ,

I don't have the exact protocol that Dr Pimentel uses but it includes treatment

with rifaximin at high dose for first 10 days alongwith high dose probiotics

followed by erythromycin or zelnorm to increase motility so the bacteria don't

get a chance to rebuild in a slow gut. You can probably get more info from this

website:

http://www.anewibssolution.com/

I found an interesting discussion regarding his protocol. Here is the link:

http://paleohacks.com/questions/78556/antibiotics-and-bacterial-dysbiosis#axzz1r\

hV5LcQ8

Seems like not everyone is happy on his protocol.

, Dr Pimentel's protocol involves the use of rifaximin and erythromycin

and if you want to avoid antibiotics, this is not the right protocol then. I

agree with a thorough thyroid workup as that could be one reason. There are

certain other diseases that should also be ruled out before treating sibo with

antibiotics. Those are diabetes, autoimmune diseases, inflammatory bowel

diseases like crohn's and ulcerative colitis or diverticuli. Any medical illness

which will slow GI motility can predispose the intestinal tract to have an

overgrowth of bacteria. So I was thinking that if you have already had the other

workup and you are ready to treat the sibo with antimicrobials, may be use some

naturals to kill bacteria and use some motility promoting agents that you can

tolerate. I remember that some of Dr Pimentel's patients used magnesium along

with his protocol to increase motility and also to get rid of restless legs.

And sorry that I couldn't write earlier today. Son was home and was busy with

him. Dan advised to observe my son today with no changes and will decide

tomorrow what the next step will be.

Hope you find answers. Good luck.

is

[Guest guest]

Thanks, is. What you found kind of seems like what I found about Dr.

Pimental. I think he recommends going on an elemental diet for 2 -3 weeks along

with the antibiotic. The biggest problem I see with that is the elemental diet

drink he suggests is full of aspartame and modified food starch. I saw some

people complaining that while the treament was effective for their SIBO, it

caused huge yeast issues. It seems to me that an intro SCD diet would be a

healthier way to achieve the same thing.

I don't have major digestive issues. They are mild right now, but I am

definitely not normal for me! I do know that my thyroid is enlarged with

heterogehous tissue and it has two nodules and two cysts. I am finally seeing

the specialist next week (LONG wait to get in.) I am sure they will want to

biopsy one of the nodules as it is hypoechoic and also do additional blood work.

In December my TSH, T4, and T3 were in the normal range, but I haven't been

tested for Hashimoto's or Grave's yet. I could theoretically be swinging all

over the place as far as my levels go - my symptoms sure are all over the place.

We'll see.

I just found it interesting that I responded so well to the Cipro...

Thanks. I didn't mean to hijack this thread into my issues! I just got

side-tracked by the appendicitis link! Let us know how your son is doing and

what your decisions are from here!

Cathy

>

> Hi ,

>

> I don't have the exact protocol that Dr Pimentel uses but it includes

treatment with rifaximin at high dose for first 10 days alongwith high dose

probiotics followed by erythromycin or zelnorm to increase motility so the

bacteria don't get a chance to rebuild in a slow gut. You can probably get more

info from this website:

>

> http://www.anewibssolution.com/

>

> I found an interesting discussion regarding his protocol. Here is the link:

>

>

http://paleohacks.com/questions/78556/antibiotics-and-bacterial-dysbiosis#axzz1r\

hV5LcQ8

>

> Seems like not everyone is happy on his protocol.

>

> , Dr Pimentel's protocol involves the use of rifaximin and

erythromycin and if you want to avoid antibiotics, this is not the right

protocol then. I agree with a thorough thyroid workup as that could be one

reason. There are certain other diseases that should also be ruled out before

treating sibo with antibiotics. Those are diabetes, autoimmune diseases,

inflammatory bowel diseases like crohn's and ulcerative colitis or diverticuli.

Any medical illness which will slow GI motility can predispose the intestinal

tract to have an overgrowth of bacteria. So I was thinking that if you have

already had the other workup and you are ready to treat the sibo with

antimicrobials, may be use some naturals to kill bacteria and use some motility

promoting agents that you can tolerate. I remember that some of Dr Pimentel's

patients used magnesium along with his protocol to increase motility and also to

get rid of restless legs.

>

> And sorry that I couldn't write earlier today. Son was home and was busy with

him. Dan advised to observe my son today with no changes and will decide

tomorrow what the next step will be.

>

> Hope you find answers. Good luck.

> is

>