hello

[Guest guest]

,

Welcome!!! Are you close to St Louis MO?

Sent via BlackBerry from T-Mobile

Hello

Hello everyone,

Thank you for letting me join your group. I am very interested in

learing more about kombucha tea. I have done a lot of reading and I

have really enjoyed all your posts, very informative.

I wonder if there is anyone in my area that would be willing to send me

a SCOBY to get started. I live in west central Illinois. I will

packing and shipping costs.

Thanks so much,

[Guest guest]

Hello Mommyb,

I am pretty new to this group too.

It is a very nice group.

They offer information, support and funny stuff as well.

I have 3 grown children and one grandchild.

I live in Huntington Beach, CA

I have Parkinson's.

I like the fact you mentioned friendship. Keep me in mind. lol and you will find the whole group as new friends I bet.

Carolyn

hello

Am new to group and suffer fron varius things such has diabetes, fibromyligia, sleepapnea high blood pressure congative heart failure. am married two growen girls and am a grandma one girl and her brother i live small town like to read ,computer, food tv and crafts am shy every shy llike to get know others for riend ship

[Guest guest]

Hello Mommyb,

I am pretty new to this group too.

It is a very nice group.

They offer information, support and funny stuff as well.

I have 3 grown children and one grandchild.

I live in Huntington Beach, CA

I have Parkinson's.

I like the fact you mentioned friendship. Keep me in mind. lol and you will find the whole group as new friends I bet.

Carolyn

hello

Am new to group and suffer fron varius things such has diabetes, fibromyligia, sleepapnea high blood pressure congative heart failure. am married two growen girls and am a grandma one girl and her brother i live small town like to read ,computer, food tv and crafts am shy every shy llike to get know others for riend ship

[Guest guest]

hello mommyb...welcome. Looks like you and I have a few things in common....Fibromyalgia, reading, crafts....and oh yeah, I could use a friend too. But don't worry about being "very,very shy" , I feel shy too every time I hit the send button, but I do it and hope for the best. Nobody has shown up to bite me yet , so I guess I'm ok. hehehehe Again welcome and enjoy. There are lots of nice people here to give you support with your illneses.

hugs

wendy h, from Pa

[Guest guest]

Hi Sandria

Welcome to the group.

I have a daughter who is 5 and is autistic she didnt get potty trained intill

she was 4 I did the potty dance with her and gave her a snack after she went.

After she went we did a huge dance and all.

I hope that helps

sari

Hello

Hi thank you for letting me join I am Sandria I have a 3yr(soon to be

4) autistic daughter and a 5(soon to be 6) aspburger son. I am lost

most of the time and over whelmed the rest of the time lol I have

joined to meet people in my boat so I dont feel so alone. I live in a

very rural part of Pa. Right now I am in need of some advice with

potty training my daughter this week she has developed a very adamant

desire to not have her wet pull up on. Which is fine with me BUT I can

not afford to go through a bag of pull ups daily. I bought a potty

chair and a small potty seat for our toilet as well. We began

yesterday well she looks at me like what are you nuts? If anyone has

any advice please do share with me. I have overcome so much with my

children by the seat of my pants but now she has begun having temper

tantrums that just wont end and gets aggressive as well so I don't

want her brother or anyone else to get hurt by her. I am going to be

looking into the GFCF diet as soon as I can as well and the metal

detox thing with the immunizations if you can also maybe steer me in a

good direction for these too. I have done some internet looking but

there is so much out there it just gets so confusing that I would

rather speak with people that actually have tried these instead of

going in blind. I do the best I can with natural and healthy because

my son has 12 food allergy's and they both have food texture issues to

deal with. Any way enough rambling Thank you Sandria

[Guest guest]

Hello Sandria,

I'm also fairly new to the group. I have a 6 yr. old daughter. She wasn't

potty-trained until she was about 4 1/2 yrs. old. I'm sorry I don't have any

advice for you because my daughter's one-on-one at school is the person who

potty trained her. One day, she wrote to me in the communication log " Do you

MIND if I start potty training her? " (Yeah, sure I mind...NOT) I was totally

floored, as I had been trying to potty train her for quite some time. Any help

that I could get was SO appreciated. Her one-on-one said she saw 'signs' that

my daughter was ready. Within 2 weeks, she was fully potty trained. So, I

don't have any suggestions, but I would say that because your daughter doesn't

like the feeling of wetness, she must be ready to be trained. Can you maybe

start with her first morning pee? Everyone has to get that one out. Maybe it

will be a start if you quickly take her to the potty seat (on the toilet), sit

her on it and run the cold water faucet to help her 'urge' to pee happen. That

might be a good starting point. I do have to say this. I reccommend that you

use only the potty seat that fits over the toilet for an autistic child. They

oftentimes get acclimated to using one or the other and its hard to break the

'habit' of the little potty chairs, which often give the child a false feeling

of safety. If you start her out getting on the big toilet, she'll always think

its 'right' to use the big toilet, even if it has a potty seat insert on top.

Again, welcome. I'm in NJ, about 25 min. from Phila.

Karmen

Hello

Hi thank you for letting me join I am Sandria I have a 3yr(soon to be

4) autistic daughter and a 5(soon to be 6) aspburger son. I am lost

most of the time and over whelmed the rest of the time lol I have

joined to meet people in my boat so I dont feel so alone. I live in a

very rural part of Pa. Right now I am in need of some advice with

potty training my daughter this week she has developed a very adamant

desire to not have her wet pull up on. Which is fine with me BUT I can

not afford to go through a bag of pull ups daily. I bought a potty

chair and a small potty seat for our toilet as well. We began

yesterday well she looks at me like what are you nuts? If anyone has

any advice please do share with me. I have overcome so much with my

children by the seat of my pants but now she has begun having temper

tantrums that just wont end and gets aggressive as well so I don't

want her brother or anyone else to get hurt by her. I am going to be

looking into the GFCF diet as soon as I can as well and the metal

detox thing with the immunizations if you can also maybe steer me in a

good direction for these too. I have done some internet looking but

there is so much out there it just gets so confusing that I would

rather speak with people that actually have tried these instead of

going in blind. I do the best I can with natural and healthy because

my son has 12 food allergy's and they both have food texture issues to

deal with. Any way enough rambling Thank you Sandria

[Guest guest]

Hello Sandria,

I'm also fairly new to the group. I have a 6 yr. old daughter. She wasn't

potty-trained until she was about 4 1/2 yrs. old. I'm sorry I don't have any

advice for you because my daughter's one-on-one at school is the person who

potty trained her. One day, she wrote to me in the communication log " Do you

MIND if I start potty training her? " (Yeah, sure I mind...NOT) I was totally

floored, as I had been trying to potty train her for quite some time. Any help

that I could get was SO appreciated. Her one-on-one said she saw 'signs' that

my daughter was ready. Within 2 weeks, she was fully potty trained. So, I

don't have any suggestions, but I would say that because your daughter doesn't

like the feeling of wetness, she must be ready to be trained. Can you maybe

start with her first morning pee? Everyone has to get that one out. Maybe it

will be a start if you quickly take her to the potty seat (on the toilet), sit

her on it and run the cold water faucet to help her 'urge' to pee happen. That

might be a good starting point. I do have to say this. I reccommend that you

use only the potty seat that fits over the toilet for an autistic child. They

oftentimes get acclimated to using one or the other and its hard to break the

'habit' of the little potty chairs, which often give the child a false feeling

of safety. If you start her out getting on the big toilet, she'll always think

its 'right' to use the big toilet, even if it has a potty seat insert on top.

Again, welcome. I'm in NJ, about 25 min. from Phila.

Karmen

Hello

Hi thank you for letting me join I am Sandria I have a 3yr(soon to be

4) autistic daughter and a 5(soon to be 6) aspburger son. I am lost

most of the time and over whelmed the rest of the time lol I have

joined to meet people in my boat so I dont feel so alone. I live in a

very rural part of Pa. Right now I am in need of some advice with

potty training my daughter this week she has developed a very adamant

desire to not have her wet pull up on. Which is fine with me BUT I can

not afford to go through a bag of pull ups daily. I bought a potty

chair and a small potty seat for our toilet as well. We began

yesterday well she looks at me like what are you nuts? If anyone has

any advice please do share with me. I have overcome so much with my

children by the seat of my pants but now she has begun having temper

tantrums that just wont end and gets aggressive as well so I don't

want her brother or anyone else to get hurt by her. I am going to be

looking into the GFCF diet as soon as I can as well and the metal

detox thing with the immunizations if you can also maybe steer me in a

good direction for these too. I have done some internet looking but

there is so much out there it just gets so confusing that I would

rather speak with people that actually have tried these instead of

going in blind. I do the best I can with natural and healthy because

my son has 12 food allergy's and they both have food texture issues to

deal with. Any way enough rambling Thank you Sandria

[Guest guest]

Hello Sandria,

I'm also fairly new to the group. I have a 6 yr. old daughter. She wasn't

potty-trained until she was about 4 1/2 yrs. old. I'm sorry I don't have any

advice for you because my daughter's one-on-one at school is the person who

potty trained her. One day, she wrote to me in the communication log " Do you

MIND if I start potty training her? " (Yeah, sure I mind...NOT) I was totally

floored, as I had been trying to potty train her for quite some time. Any help

that I could get was SO appreciated. Her one-on-one said she saw 'signs' that

my daughter was ready. Within 2 weeks, she was fully potty trained. So, I

don't have any suggestions, but I would say that because your daughter doesn't

like the feeling of wetness, she must be ready to be trained. Can you maybe

start with her first morning pee? Everyone has to get that one out. Maybe it

will be a start if you quickly take her to the potty seat (on the toilet), sit

her on it and run the cold water faucet to help her 'urge' to pee happen. That

might be a good starting point. I do have to say this. I reccommend that you

use only the potty seat that fits over the toilet for an autistic child. They

oftentimes get acclimated to using one or the other and its hard to break the

'habit' of the little potty chairs, which often give the child a false feeling

of safety. If you start her out getting on the big toilet, she'll always think

its 'right' to use the big toilet, even if it has a potty seat insert on top.

Again, welcome. I'm in NJ, about 25 min. from Phila.

Karmen

Hello

Hi thank you for letting me join I am Sandria I have a 3yr(soon to be

4) autistic daughter and a 5(soon to be 6) aspburger son. I am lost

most of the time and over whelmed the rest of the time lol I have

joined to meet people in my boat so I dont feel so alone. I live in a

very rural part of Pa. Right now I am in need of some advice with

potty training my daughter this week she has developed a very adamant

desire to not have her wet pull up on. Which is fine with me BUT I can

not afford to go through a bag of pull ups daily. I bought a potty

chair and a small potty seat for our toilet as well. We began

yesterday well she looks at me like what are you nuts? If anyone has

any advice please do share with me. I have overcome so much with my

children by the seat of my pants but now she has begun having temper

tantrums that just wont end and gets aggressive as well so I don't

want her brother or anyone else to get hurt by her. I am going to be

looking into the GFCF diet as soon as I can as well and the metal

detox thing with the immunizations if you can also maybe steer me in a

good direction for these too. I have done some internet looking but

there is so much out there it just gets so confusing that I would

rather speak with people that actually have tried these instead of

going in blind. I do the best I can with natural and healthy because

my son has 12 food allergy's and they both have food texture issues to

deal with. Any way enough rambling Thank you Sandria

[Guest guest]

Hello Sandria,

I don't have any suggestions for the potty training issue, but I do want to

make sure that, living in PA, you are aware that you can probably get

wraparound services for both children. The wraparound people work 1-on-1

with your child and should help with issues like toilet training and

agression, as well as other items (social issues, speaking, whatever).

If you already know about this and/or receive wraparound, then please ignore

this email...

Hope this helps,

Inna.

Posted by: " Sandria " lphoenixstar@...

<lphoenixstar@...?Subject=+Re%3AHello> lilpixierose

<http://profiles.yahoo.com/lilpixierose> Tue Aug 12, 2008 10:06 am (PDT) Hi

thank you for letting me join I am Sandria I have a 3yr(soon to be

4) autistic daughter and a 5(soon to be 6) aspburger son. I am lost

most of the time and over whelmed the rest of the time lol I have

joined to meet people in my boat so I dont feel so alone. I live in a

very rural part of Pa. Right now I am in need of some advice with

potty training my daughter this week she has developed a very adamant

desire to not have her wet pull up on. Which is fine with me BUT I can

not afford to go through a bag of pull ups daily. I bought a potty

chair and a small potty seat for our toilet as well. We began

yesterday well she looks at me like what are you nuts? If anyone has

any advice please do share with me. I have overcome so much with my

children by the seat of my pants but now she has begun having temper

tantrums that just wont end and gets aggressive as well so I don't

want her brother or anyone else to get hurt by her. I am going to be

looking into the GFCF diet as soon as I can as well and the metal

detox thing with the immunizations if you can also maybe steer me in a

good direction for these too. I have done some internet looking but

there is so much out there it just gets so confusing that I would

rather speak with people that actually have tried these instead of

going in blind. I do the best I can with natural and healthy because

my son has 12 food allergy's and they both have food texture issues to

deal with. Any way enough rambling Thank you Sandria

[Guest guest]

Hello Sandria,

I don't have any suggestions for the potty training issue, but I do want to

make sure that, living in PA, you are aware that you can probably get

wraparound services for both children. The wraparound people work 1-on-1

with your child and should help with issues like toilet training and

agression, as well as other items (social issues, speaking, whatever).

If you already know about this and/or receive wraparound, then please ignore

this email...

Hope this helps,

Inna.

Posted by: " Sandria " lphoenixstar@...

<lphoenixstar@...?Subject=+Re%3AHello> lilpixierose

<http://profiles.yahoo.com/lilpixierose> Tue Aug 12, 2008 10:06 am (PDT) Hi

thank you for letting me join I am Sandria I have a 3yr(soon to be

4) autistic daughter and a 5(soon to be 6) aspburger son. I am lost

most of the time and over whelmed the rest of the time lol I have

joined to meet people in my boat so I dont feel so alone. I live in a

very rural part of Pa. Right now I am in need of some advice with

potty training my daughter this week she has developed a very adamant

desire to not have her wet pull up on. Which is fine with me BUT I can

not afford to go through a bag of pull ups daily. I bought a potty

chair and a small potty seat for our toilet as well. We began

yesterday well she looks at me like what are you nuts? If anyone has

any advice please do share with me. I have overcome so much with my

children by the seat of my pants but now she has begun having temper

tantrums that just wont end and gets aggressive as well so I don't

want her brother or anyone else to get hurt by her. I am going to be

looking into the GFCF diet as soon as I can as well and the metal

detox thing with the immunizations if you can also maybe steer me in a

good direction for these too. I have done some internet looking but

there is so much out there it just gets so confusing that I would

rather speak with people that actually have tried these instead of

going in blind. I do the best I can with natural and healthy because

my son has 12 food allergy's and they both have food texture issues to

deal with. Any way enough rambling Thank you Sandria

[Guest guest]

shahaylee wrote:

> Hi there,

> I am from New Zealand but reside presently in Philadelphia.

> I am a absolute newbie to Natural Perfumery.

> I am interested Alternative Medicines and came across this forum on my

> journey, so I thought this would be interesting to learn or at least

> understand.

> I would like to ask, what is the difference between, Aromatherapy and

> Natural Perfumery and Perfumes (you get in the store)?

> Sorry to seem silly to ask the above question but I have never heard

> of natural perfumery before.

>

> Thanks for any help.

Hi Shahaylee:

Welcome to the group, and thanks for introducing yourself. I'm

originally from Philly, and we have a few members there.

Here's a link to a site I maintain

<http://.com/about.htm> (it's since been evolved into

the Natural Perfumers Guild <http://naturalperfumers.com>) and on this

page you'll find a chart noting the differences, as written by Mandy

Aftel <http://aftelier.com>. She's since updated it, and it just

appeared in a Fragrance Foundation <http://fragrance.org> publication. I

have to figure how to post the pdf, but in the meantime, this chart will

do just fine ;-).

--

Anya

Anya's Garden http://AnyasGarden.com - perfumes, aromatics, classes,

consultation

Natural Perfumers Guild + blog with daily updates

http://NaturalPerfumersGuild.blogspot.com

1600+ member Natural Perfumery group -

http://health./group//

[Guest guest]

>

> Hi there,

> I am from New Zealand but reside presently in Philadelphia.

> I am a absolute newbie to Natural Perfumery.

>

Hi i'm also a newbie and reside at Philadelphia, PA. perhaps if we

pursue Natural Perfumery farther we could get together to create.

>

I would like to ask, what is the difference between, Aromatherapy and

> Natural Perfumery and Perfumes (you get in the store)?

> Sorry to seem silly to ask the above question but I have never heard

> of natural perfumery before.

>

> I belive Natural perfumery is perfume created with essential oils or

plant based materials as oppesed to synthetic or artifical chemicals

often used in store bought perfumes.

[Guest guest]

Thank you very much for the welcome and the responses.

I have been reading all the links given.

There is some very interesting info.

Gonna be busy for awhile reading them all.

Thanks again fro the help

[Guest guest]

Thank you very much for the welcome and the responses.

I have been reading all the links given.

There is some very interesting info.

Gonna be busy for awhile reading them all.

Thanks again fro the help

[Guest guest]

:

First off, thanks for all you and your family are doing on our behalf in the

military - know that it is greatly appreciated!!  Here is what we did to figure

out some sort of plan of attack:

1. Record the details of the episodes very diligently - temperature, all

symptoms, check for mouth sores, throat involvement, lymph node swelling,

everything.

2. Use motrin and tylenol to control the fevers as best you can - make sure your

daughter stays very well hydrated - if she's throwing up, try pedialyte - no

water -that irritates the stomach significantly if they're throwing up.

3. Do the blood work to ensure there isn't something obvious going on -

infections, other issues

4. If you see that the major symptoms are fever (on a cyclical basis - doesn't

have to be spot on regularity, but generally a routine); throat involvement;

mouth sores (although some don't have this as a major symptom); lymph node

sewlling on the side of the neck, then this is likely .

5. If your Doctor believes this is , the path we went down was to start a 6

month course of Cimetidine (brand name Tagamet) - twice a day and dose varies

based upon weight.  This has shown promise in about less than 20% of the

cases out there.  Try it and see what happens.  Our Dr. told us if it stops

the fevers for about 6 months, then you have hope your largely beyond this

thing.  If the Cimetidine does not work, I have read a couple of other

medications that have also been used with varying degrees of success - Singulair

(an asthma medication) and Colchicine (a medication used in FMF patients, but

one that has recently been shown to work in patients as well).

6. In addition to these mediations, we were given steroids - predinosolone.  We

give the steroid once we see the temperature skyrocket and for us, it usually

wipes out the fever and our son bounces back within a day.  We have had an

episode where we had to continue with motrin for an extra day after the steroid,

but then we were back to normal, so it's not a miracle cure by any means and

many are worried about long term effects of this mediation.

7. If you don't have success with the medication route, there appears to be some

growing confidence in the removal of  the tonsils and adenoids (T & A).  You

should check with your Dr. and with a pediatric Ear Nose and Throat (ENT)

specialist.  There is always risk with surgery and you need to weigh that as you

consider your game plan.

8. Others on the board are strong proponents of genetic testing to understand

what else might be going on.  is a syndrome that is diagnosed through the

exclusion of other illnesses.  I would say that the stomach involvement and

pain could be many things, but it is also associated with FMF symptoms, so make

sure you understand whether your daughter might have this - again, there are so

many things that can cause common symptoms, I pause to suggest I know anything

about what your daughter has, but getting to the bottom of this and defining a

path forward is critical.  If it is FMF, know that daily colchicine has shown

great promise in addressing the longer term issues associated with that illness.

I hope this helps and hang in there.  Again, I can't tell you how grateful I am

for what you and your family are doing for our country.  Let me know if you have

any other questions.  I'll leave you with one final thought - if this is

, things will get better - it's just a matter of dealing with the

unbelievable amount of stresss this causes all of us.  Most children will

outgrow it with no long term problems.  The when, the what's and all of that are

the unknowns that are so hard to deal with, but hang in there and try to get to

the bottom of this with your Doctor.

 Regards,

Nick Handrinos

[Guest guest]

:

First off, thanks for all you and your family are doing on our behalf in the

military - know that it is greatly appreciated!!  Here is what we did to figure

out some sort of plan of attack:

1. Record the details of the episodes very diligently - temperature, all

symptoms, check for mouth sores, throat involvement, lymph node swelling,

everything.

2. Use motrin and tylenol to control the fevers as best you can - make sure your

daughter stays very well hydrated - if she's throwing up, try pedialyte - no

water -that irritates the stomach significantly if they're throwing up.

3. Do the blood work to ensure there isn't something obvious going on -

infections, other issues

4. If you see that the major symptoms are fever (on a cyclical basis - doesn't

have to be spot on regularity, but generally a routine); throat involvement;

mouth sores (although some don't have this as a major symptom); lymph node

sewlling on the side of the neck, then this is likely .

5. If your Doctor believes this is , the path we went down was to start a 6

month course of Cimetidine (brand name Tagamet) - twice a day and dose varies

based upon weight.  This has shown promise in about less than 20% of the

cases out there.  Try it and see what happens.  Our Dr. told us if it stops

the fevers for about 6 months, then you have hope your largely beyond this

thing.  If the Cimetidine does not work, I have read a couple of other

medications that have also been used with varying degrees of success - Singulair

(an asthma medication) and Colchicine (a medication used in FMF patients, but

one that has recently been shown to work in patients as well).

6. In addition to these mediations, we were given steroids - predinosolone.  We

give the steroid once we see the temperature skyrocket and for us, it usually

wipes out the fever and our son bounces back within a day.  We have had an

episode where we had to continue with motrin for an extra day after the steroid,

but then we were back to normal, so it's not a miracle cure by any means and

many are worried about long term effects of this mediation.

7. If you don't have success with the medication route, there appears to be some

growing confidence in the removal of  the tonsils and adenoids (T & A).  You

should check with your Dr. and with a pediatric Ear Nose and Throat (ENT)

specialist.  There is always risk with surgery and you need to weigh that as you

consider your game plan.

8. Others on the board are strong proponents of genetic testing to understand

what else might be going on.  is a syndrome that is diagnosed through the

exclusion of other illnesses.  I would say that the stomach involvement and

pain could be many things, but it is also associated with FMF symptoms, so make

sure you understand whether your daughter might have this - again, there are so

many things that can cause common symptoms, I pause to suggest I know anything

about what your daughter has, but getting to the bottom of this and defining a

path forward is critical.  If it is FMF, know that daily colchicine has shown

great promise in addressing the longer term issues associated with that illness.

I hope this helps and hang in there.  Again, I can't tell you how grateful I am

for what you and your family are doing for our country.  Let me know if you have

any other questions.  I'll leave you with one final thought - if this is

, things will get better - it's just a matter of dealing with the

unbelievable amount of stresss this causes all of us.  Most children will

outgrow it with no long term problems.  The when, the what's and all of that are

the unknowns that are so hard to deal with, but hang in there and try to get to

the bottom of this with your Doctor.

 Regards,

Nick Handrinos

[Guest guest]

:

First off, thanks for all you and your family are doing on our behalf in the

military - know that it is greatly appreciated!!  Here is what we did to figure

out some sort of plan of attack:

1. Record the details of the episodes very diligently - temperature, all

symptoms, check for mouth sores, throat involvement, lymph node swelling,

everything.

2. Use motrin and tylenol to control the fevers as best you can - make sure your

daughter stays very well hydrated - if she's throwing up, try pedialyte - no

water -that irritates the stomach significantly if they're throwing up.

3. Do the blood work to ensure there isn't something obvious going on -

infections, other issues

4. If you see that the major symptoms are fever (on a cyclical basis - doesn't

have to be spot on regularity, but generally a routine); throat involvement;

mouth sores (although some don't have this as a major symptom); lymph node

sewlling on the side of the neck, then this is likely .

5. If your Doctor believes this is , the path we went down was to start a 6

month course of Cimetidine (brand name Tagamet) - twice a day and dose varies

based upon weight.  This has shown promise in about less than 20% of the

cases out there.  Try it and see what happens.  Our Dr. told us if it stops

the fevers for about 6 months, then you have hope your largely beyond this

thing.  If the Cimetidine does not work, I have read a couple of other

medications that have also been used with varying degrees of success - Singulair

(an asthma medication) and Colchicine (a medication used in FMF patients, but

one that has recently been shown to work in patients as well).

6. In addition to these mediations, we were given steroids - predinosolone.  We

give the steroid once we see the temperature skyrocket and for us, it usually

wipes out the fever and our son bounces back within a day.  We have had an

episode where we had to continue with motrin for an extra day after the steroid,

but then we were back to normal, so it's not a miracle cure by any means and

many are worried about long term effects of this mediation.

7. If you don't have success with the medication route, there appears to be some

growing confidence in the removal of  the tonsils and adenoids (T & A).  You

should check with your Dr. and with a pediatric Ear Nose and Throat (ENT)

specialist.  There is always risk with surgery and you need to weigh that as you

consider your game plan.

8. Others on the board are strong proponents of genetic testing to understand

what else might be going on.  is a syndrome that is diagnosed through the

exclusion of other illnesses.  I would say that the stomach involvement and

pain could be many things, but it is also associated with FMF symptoms, so make

sure you understand whether your daughter might have this - again, there are so

many things that can cause common symptoms, I pause to suggest I know anything

about what your daughter has, but getting to the bottom of this and defining a

path forward is critical.  If it is FMF, know that daily colchicine has shown

great promise in addressing the longer term issues associated with that illness.

I hope this helps and hang in there.  Again, I can't tell you how grateful I am

for what you and your family are doing for our country.  Let me know if you have

any other questions.  I'll leave you with one final thought - if this is

, things will get better - it's just a matter of dealing with the

unbelievable amount of stresss this causes all of us.  Most children will

outgrow it with no long term problems.  The when, the what's and all of that are

the unknowns that are so hard to deal with, but hang in there and try to get to

the bottom of this with your Doctor.

 Regards,

Nick Handrinos

[Guest guest]

Hi ,

Nick said it best. I don't have much more to add to that accept my

support. Just based on what you said it doesn't sound like the

steriod is working as it would normally wipe out the fever.

I also wanted to mention one other thing... be careful putting her

into a cool tub while she is fevering. Putting her into cool water,

especially if you notice her shaking, can actually cause the body to

go into shock and potentially cause a seizure. I know that " they

say " you should put them in a cool back but from my experience luke

warm is the coolest tub you would want to put her in. When my son

was that age I would just use luke warm wash cloths and wipe them on

his head and neck. That seemed to help a bit. I know that you have

your son to take care of as well. My son just wanted to sit with me

on the couch and do nothing. I have watched movie CARS literally

over 400 times!

Big hugs to you with your little girl and son. It's hard enough

having two children that close together nevertheless having one of

them fevering.

--

Renan's mom, age 3, fevering since 8 months (on a 12 week break.. I

hate to even say that out loud)

[Guest guest]

Hi ,

Nick said it best. I don't have much more to add to that accept my

support. Just based on what you said it doesn't sound like the

steriod is working as it would normally wipe out the fever.

I also wanted to mention one other thing... be careful putting her

into a cool tub while she is fevering. Putting her into cool water,

especially if you notice her shaking, can actually cause the body to

go into shock and potentially cause a seizure. I know that " they

say " you should put them in a cool back but from my experience luke

warm is the coolest tub you would want to put her in. When my son

was that age I would just use luke warm wash cloths and wipe them on

his head and neck. That seemed to help a bit. I know that you have

your son to take care of as well. My son just wanted to sit with me

on the couch and do nothing. I have watched movie CARS literally

over 400 times!

Big hugs to you with your little girl and son. It's hard enough

having two children that close together nevertheless having one of

them fevering.

--

Renan's mom, age 3, fevering since 8 months (on a 12 week break.. I

hate to even say that out loud)

[Guest guest]

,

Thank you to you and your husband for all that you do for our country.  You are

in a very difficult situation, I can't pretend to imagine how hard it must be

for you.  This board is a great place for information and support.  Did the

steroid work at all?  Has your daughter had blood work during a fever episode? 

   

 

We eventually saw a hematologist, he was the one who diagnosed my son.  They

tested him at the start of a fever episode and there were certain elevated

levels.  We were given prednisone and told to give it at the onset of a fever. 

It worked, took the fever away within hours.  The downside to the prednisone is

that the fevers returned faster.  My son was fevering every two weeks, every

other Friday he would start fevering. The prednisone was causing the fevers to

come every 7 days, sometime every 4 or 5 days.  He was on prednisone for a while

before they started coming more frequently. 

 

I hope you can get some answers and some relief.  You have your hands full!  You

are a good mom, you are here trying to find answers.  Best of luck to you!

 

Take Care,

Jackie

[Guest guest]

,

Thank you to you and your husband for all that you do for our country.  You are

in a very difficult situation, I can't pretend to imagine how hard it must be

for you.  This board is a great place for information and support.  Did the

steroid work at all?  Has your daughter had blood work during a fever episode? 

   

 

We eventually saw a hematologist, he was the one who diagnosed my son.  They

tested him at the start of a fever episode and there were certain elevated

levels.  We were given prednisone and told to give it at the onset of a fever. 

It worked, took the fever away within hours.  The downside to the prednisone is

that the fevers returned faster.  My son was fevering every two weeks, every

other Friday he would start fevering. The prednisone was causing the fevers to

come every 7 days, sometime every 4 or 5 days.  He was on prednisone for a while

before they started coming more frequently. 

 

I hope you can get some answers and some relief.  You have your hands full!  You

are a good mom, you are here trying to find answers.  Best of luck to you!

 

Take Care,

Jackie

[Guest guest]

Thank you everyone for replying, i hit some lows and last was

definitely one of them, I appreciate hearing me out. THe fever this

morning was only 99.5 which is low for a fever that yesterday this

time was 102 even though the steroid did not work immediately could

this mean it did work? I was wondering can stress cause the fevers to

start? Also I was reading other articles and posts and realized she

had her immunizations on wed and fevered sat could they be connected?

She had blood work during a fever in apr when it first started because

they wanted to find something to give her antibiotics because it was

like 104 or something ridiculously high. but not since I wish they

would but when i suggest things the Navy Urgent care looks at me like

im crazy over concerned mom. And pretty much tells me to talk to my

pediatrician impossible on the weekends! lol Monday I will tell him

about it more. WHat scares me is it feels like she could have any

number of things and we wont be sure until we start testing which in

itself is along road where she is a lab rat. Thank you everyone.

[Guest guest]

Dear ,

Hang in there! When my daughter first started her fevers (1 year old.)

It was so scary, so awful and the must stressful thing I've ever dealt

with in my entire life! But it does get easier! I'm not sure if the

fevers aren't as bad now or if you just start getting used to them!

(BUT I think its the later!) You learn how to deal with them, and I

think the kids also do....She used to cry and cry and cry when she was

younger.... Now shes 2.5 and just deals with them better! We watch

lost of TV! and I let her eat junk food, like lots of ice cream, and

ice pops..... I say to myself that the fever will not hurt her (young

kids can handle them) and I just STAY on top of the fever reducers! I

set my alarm clock during the night and wake her up to take them....

We have tried the ant-acid (didn't work) and steroids (fevers come

back sooner)..... but now we are just waiting for the DNA tests (to

make sure its not FMF, HIDS or TRAPS) back before we decide on the T & A

route....

Good luck! And stay strong! And just get yourself a doctor (or a few)

that you like. (one that you feel is really trying to help)

Take Care

-Hali

mom to Sky (2.5, fevers since 1 year)

[Guest guest]

,

 

Yes stress can cause the fevers to come on early in some of the children with

.  Our son had that happen a few times.  I was curious...did your daughter

start fevering just after you brought your new baby home?  Most toddlers go

through emotional issues when a new baby comes home.  They were used to being

the one who got all of the attention and it is difficult at first for them to

understand.  Our son is 2yrs 9mo old and we also have a 6mo old.  Our son was

fevering long before I had our 2nd child, but there was an adjustment period

after bringing the baby home.  Tyler started doing some things he had grown out

of (like chewing on things, throwing tantrums on the floor, sucking on his

fingers, etc. ).  It took about a month and a half for him to get over it.  Our

pediatrician had told us to expect it and to just make sure we include time just

for him (like when baby is sleeping) where it is strictly one on one with no

iterruptions.  This

helped him know we were still devoted to him as well.  Once in awhile he still

gets upset when he wants something and I am in the middle of feeding the baby

and can't do it.  But overall he understands and waits until I am done. 

 

I did also notice emotional issues brought his fevers on, and there were a few

times he got into trouble for being 'bad'.  I was angry with him and he would

get even more upset at that.  Sure enough the next day was a fever. 

 

It is very hard with the children so close, and even more so that you are having

to do it on your own.  Tyler always needed to be held often when he was fevering

for reassurance.  I also used alot of TV to get thru the sick times, it helped

keep him calmer (ELMO, , Kipper, whatever worked). 

 

I hope this helps you. 

 

My husband will be deployed this spring to Iraq.  With the train up and demob it

will be 15 months (he is in the national guard reserve).  I am hoping the T & A

will be completely successful for Tyler, he has so far skipped 4 fevers since we

had it done.  If they come back I will be dealing with it on my own as well.

 

Bless your family and I hope your little girl will continue to do better.

 

Pruden

[Guest guest]

,

 

Yes stress can cause the fevers to come on early in some of the children with

.  Our son had that happen a few times.  I was curious...did your daughter

start fevering just after you brought your new baby home?  Most toddlers go

through emotional issues when a new baby comes home.  They were used to being

the one who got all of the attention and it is difficult at first for them to

understand.  Our son is 2yrs 9mo old and we also have a 6mo old.  Our son was

fevering long before I had our 2nd child, but there was an adjustment period

after bringing the baby home.  Tyler started doing some things he had grown out

of (like chewing on things, throwing tantrums on the floor, sucking on his

fingers, etc. ).  It took about a month and a half for him to get over it.  Our

pediatrician had told us to expect it and to just make sure we include time just

for him (like when baby is sleeping) where it is strictly one on one with no

iterruptions.  This

helped him know we were still devoted to him as well.  Once in awhile he still

gets upset when he wants something and I am in the middle of feeding the baby

and can't do it.  But overall he understands and waits until I am done. 

 

I did also notice emotional issues brought his fevers on, and there were a few

times he got into trouble for being 'bad'.  I was angry with him and he would

get even more upset at that.  Sure enough the next day was a fever. 

 

It is very hard with the children so close, and even more so that you are having

to do it on your own.  Tyler always needed to be held often when he was fevering

for reassurance.  I also used alot of TV to get thru the sick times, it helped

keep him calmer (ELMO, , Kipper, whatever worked). 

 

I hope this helps you. 

 

My husband will be deployed this spring to Iraq.  With the train up and demob it

will be 15 months (he is in the national guard reserve).  I am hoping the T & A

will be completely successful for Tyler, he has so far skipped 4 fevers since we

had it done.  If they come back I will be dealing with it on my own as well.

 

Bless your family and I hope your little girl will continue to do better.

 

Pruden