Newbie Here

[Guest guest]

I used Aveeno lotion and benadryl for itchin. Aveeno also makes a soap and oatmeal bath. When I was on treatment my dr. ( on the cutting edge of hep treatment) told me to get a flu shot. If you can find one I'd get it.

By the way, I'm Sharon, and I too live in Texas.

Sharontammster62 <t1d1r1d1@...> wrote:

Hello everyone.I just thought that I would let ya'll know that I am here. I live in Texas and tested positive for hep c in 1990 (?) when the test first came out. I am a 1b and started treatment almost 6 months ago. I will be having my first "big" test in 3 weeks...it will be my 24th shot then...half way through :)I am also taking Neupogen and Epogen for low white and red counts. Not nice meds :\ but I am thankful for them :)I haven't had a lot of problems, but a few of them are I seem to be losing hair. I am not concerned about it. In the large scheme of things, that doesn't bother me at all.I am itching!! Does anyone have any suggestions for this? My doc seems to be useless, so I haven't even called him. I suppose I should and see if he can do anything. I get the feeling the nurse is tired of me...because you can NEVER

talk to the doc. I haven't seen him since I started treatments. Anyway, about the itching. My scalp is getting really bad, I have a big patch on my arm that looks a lot like eczema and now my personal area is starting to itch (blush). I didn't know how to say that, but I need all the help that I can get, sorry.I have some other sides that are not nice, but could be a lot worse so I don't dwell on them too much. Take them as they come.I just consider this all a grand adventure. (Although I am getting weary of it LOL)Oh, one last question...Did any of you get a flu shot? What are ya'lls thoughts on that? My doc didn't know and told me to call the Pegasys 800 # which they of course told me that they couldn't give medical advice...for me to call my doc LOL.I hope this isn't information overload. Thanks for having this group.

<><TammieD><>__________________________________________________

[Guest guest]

I lived on that lotion while I was on treatment.

Lynne Dunham

NVSR Director, Follow-up Coordinator

NVSR.org

-----Original Message-----From: Sharon Zeis [mailto:szeis_1@...]Sent: Sunday, November 07, 2004 9:54 AM Subject: Re: [ ] newbie here

I used Aveeno lotion and benadryl for itchin. Aveeno also makes a soap and oatmeal bath. When I was on treatment my dr. ( on the cutting edge of hep treatment) told me to get a flu shot. If you can find one I'd get it.

By the way, I'm Sharon, and I too live in Texas.

Sharontammster62 <t1d1r1d1@...> wrote:

Hello everyone.I just thought that I would let ya'll know that I am here. I live in Texas and tested positive for hep c in 1990 (?) when the test first came out. I am a 1b and started treatment almost 6 months ago. I will be having my first "big" test in 3 weeks...it will be my 24th shot then...half way through :)I am also taking Neupogen and Epogen for low white and red counts. Not nice meds :\ but I am thankful for them :)I haven't had a lot of problems, but a few of them are I seem to be losing hair. I am not concerned about it. In the large scheme of things, that doesn't bother me at all.I am itching!! Does anyone have any suggestions for this? My doc seems to be useless, so I haven't even called him. I suppose I should and see if he can do anything. I get the feeling the nurse is tired of me...because you can NEVER talk to the doc. I haven't seen him since I started treatments. Anyway, about the itching. My scalp is getting really bad, I have a big patch on my arm that looks a lot like eczema and now my personal area is starting to itch (blush). I didn't know how to say that, but I need all the help that I can get, sorry.I have some other sides that are not nice, but could be a lot worse so I don't dwell on them too much. Take them as they come.I just consider this all a grand adventure. (Although I am getting weary of it LOL)Oh, one last question...Did any of you get a flu shot? What are ya'lls thoughts on that? My doc didn't know and told me to call the Pegasys 800 # which they of course told me that they couldn't give medical advice...for me to call my doc LOL.I hope this isn't information overload. Thanks for having this group. <><TammieD><>

__________________________________________________

[Guest guest]

Hi Tammie, the nurse at my doc's office said not to get a flu shot. I thougth that was weird cuz I thought I read that others on the list had gotten one.

Lynn

[Guest guest]

I was told to get the flu shot while I was on treatments. Just to be on the safe side especially with the treatments side effects.

Lynne Dunham

NVSR Director, Follow-up Coordinator

NVSR.org

-----Original Message-----From: Lynn [mailto:OMySister@...]Sent: Monday, November 08, 2004 7:49 AM Subject: [ ] Re: Newbie here

Hi Tammie, the nurse at my doc's office said not to get a flu shot. I thougth that was weird cuz I thought I read that others on the list had gotten one.

Lynn

[Guest guest]

My doctor advised me to get one when I was on treatment, of course they didn't have the shortage they have this year. -dz-Lynn <OMySister@...> wrote:

Hi Tammie, the nurse at my doc's office said not to get a flu shot. I thougth that was weird cuz I thought I read that others on the list had gotten one.

Lynn

[Guest guest]

Hi Tammie!

I just talked to my doctor and he does not recommend the flu shot. (I

had mine last week, and I thought the doc was going to beat me for not

calling to ask first....) I guess when your WBCs get low, there may be

a problem with getting the flu. So, make sure to call your doc.

Welcome to the group. They are very very helpful and supportive.

Barbara

>

> Hello everyone.

> I just thought that I would let ya'll know that I am here. I live in

> Texas and tested positive for hep c in 1990 (?) when the test first

> came out. I am a 1b and started treatment almost 6 months ago. I will

> be having my first " big " test in 3 weeks...it will be my 24th shot

> then...half way through

> I am also taking Neupogen and Epogen for low white and red counts.

> Not nice meds :\ but I am thankful for them

> I haven't had a lot of problems, but a few of them are I seem to be

> losing hair. I am not concerned about it. In the large scheme of

> things, that doesn't bother me at all.

> I am itching!! Does anyone have any suggestions for this? My doc

> seems to be useless, so I haven't even called him. I suppose I should

> and see if he can do anything. I get the feeling the nurse is tired

> of me...because you can NEVER talk to the doc. I haven't seen him

> since I started treatments. Anyway, about the itching. My scalp is

> getting really bad, I have a big patch on my arm that looks a lot

> like eczema and now my personal area is starting to itch (blush). I

> didn't know how to say that, but I need all the help that I can get,

> sorry.

> I have some other sides that are not nice, but could be a lot worse

> so I don't dwell on them too much. Take them as they come.

> I just consider this all a grand adventure. (Although I am getting

> weary of it LOL)

> Oh, one last question...Did any of you get a flu shot? What are

> ya'lls thoughts on that? My doc didn't know and told me to call the

> Pegasys 800 # which they of course told me that they couldn't give

> medical advice...for me to call my doc LOL.

> I hope this isn't information overload. Thanks for having this group.

> <><TammieD><>

[Guest guest]

My doctor gave me riglan for itching and it seemed to help somewhat. I used niacin shampoo, which helped my itchy head, and I believe helped alleviate the hair loss. -dz-tammster62 <t1d1r1d1@...> wrote:

Hello everyone.I just thought that I would let ya'll know that I am here. I live in Texas and tested positive for hep c in 1990 (?) when the test first came out. I am a 1b and started treatment almost 6 months ago. I will be having my first "big" test in 3 weeks...it will be my 24th shot then...half way through :)I am also taking Neupogen and Epogen for low white and red counts. Not nice meds :\ but I am thankful for them :)I haven't had a lot of problems, but a few of them are I seem to be losing hair. I am not concerned about it. In the large scheme of things, that doesn't bother me at all.I am itching!! Does anyone have any suggestions for this? My doc seems to be useless, so I haven't even called him. I suppose I should and see if he can do anything. I get the feeling the nurse is tired of me...because you can NEVER

talk to the doc. I haven't seen him since I started treatments. Anyway, about the itching. My scalp is getting really bad, I have a big patch on my arm that looks a lot like eczema and now my personal area is starting to itch (blush). I didn't know how to say that, but I need all the help that I can get, sorry.I have some other sides that are not nice, but could be a lot worse so I don't dwell on them too much. Take them as they come.I just consider this all a grand adventure. (Although I am getting weary of it LOL)Oh, one last question...Did any of you get a flu shot? What are ya'lls thoughts on that? My doc didn't know and told me to call the Pegasys 800 # which they of course told me that they couldn't give medical advice...for me to call my doc LOL.I hope this isn't information overload. Thanks for having this group.

<><TammieD><>

[Guest guest]

Hi Kristi. My son is 8 months old, and we're getting a STARband in 2 weeks.

Our pediatrician ordered a skull x-ray after we had concerns about his head

not rounding out. The radiologist recommended a CT Scan because he saw an

area on the x-ray that he was concerned about. So, we had the cat scan

done, and yes- my son had to be sedated. They use an oral sedation though-

no shots or IV. He handled it really well. He was just extra sleepy for

the rest of the day. His CT scan came back normal- the bones weren't fused

together. The next step was being referred to a specialist- in pediatric

rehabilitation. So, we saw her and she said we needed the helmet. We also

have to do 2 different kinds of stretches daily because my son has a bit of

tort as well. He really dislikes the stretches. Actually, Yesterday my son

had a STAR scan to order the STARband. It's really expensive, but he also

really needs it. So- that's my story. Good luck with everything.

Sandy & Dex

newbie here

>

>

> Hello everyone. My name is Kristi and I have a 6.5 month old who I

> believe has positional plagio. The pediatrician is referring us to a

> specialist which we will meet with this week. I am overcome with

> fear, blame, worry..UGH. I am just so mad that the AAP crams

> the " back to sleep " campaign down parents throats, but then this

> condition is rarely (if ever) mentioned or heard about. Upon doing

> some reading this morning, I found out that THOUSANDS of babies are

> diagnosed with this every year. And the cost of treatment..SHEESH!

> It's just frustrating..

>

> But my question is what do my husband and I need to expect with the

> first visit? I'd love to know kinda what to expect. Our pediatrician

> said a CT Scan would be ordered.. but I don't even know what that

> procedure will be like for my little boy. Does it require sedation??

> I am surely hoping no anesthesia is involved. Any advice/stories

> are very appreciated. Thanks so much. ~ Kristi

>

>

>

>

>

>

> For more plagio info

[Guest guest]

Hi Kristi. My son is 8 months old, and we're getting a STARband in 2 weeks.

Our pediatrician ordered a skull x-ray after we had concerns about his head

not rounding out. The radiologist recommended a CT Scan because he saw an

area on the x-ray that he was concerned about. So, we had the cat scan

done, and yes- my son had to be sedated. They use an oral sedation though-

no shots or IV. He handled it really well. He was just extra sleepy for

the rest of the day. His CT scan came back normal- the bones weren't fused

together. The next step was being referred to a specialist- in pediatric

rehabilitation. So, we saw her and she said we needed the helmet. We also

have to do 2 different kinds of stretches daily because my son has a bit of

tort as well. He really dislikes the stretches. Actually, Yesterday my son

had a STAR scan to order the STARband. It's really expensive, but he also

really needs it. So- that's my story. Good luck with everything.

Sandy & Dex

newbie here

>

>

> Hello everyone. My name is Kristi and I have a 6.5 month old who I

> believe has positional plagio. The pediatrician is referring us to a

> specialist which we will meet with this week. I am overcome with

> fear, blame, worry..UGH. I am just so mad that the AAP crams

> the " back to sleep " campaign down parents throats, but then this

> condition is rarely (if ever) mentioned or heard about. Upon doing

> some reading this morning, I found out that THOUSANDS of babies are

> diagnosed with this every year. And the cost of treatment..SHEESH!

> It's just frustrating..

>

> But my question is what do my husband and I need to expect with the

> first visit? I'd love to know kinda what to expect. Our pediatrician

> said a CT Scan would be ordered.. but I don't even know what that

> procedure will be like for my little boy. Does it require sedation??

> I am surely hoping no anesthesia is involved. Any advice/stories

> are very appreciated. Thanks so much. ~ Kristi

>

>

>

>

>

>

> For more plagio info

[Guest guest]

Hi Kristi,

Welcome to the club. See my message from Friday, message # 115924

( " Peds are the worst!). It has many of the same thoughts as yours. I

trusted the peds in saying that it would round out on its own too.

Good thing is that there is still time for our little babies for

correction. This website has been so helpful to me. I also went to

the Chat room on Friday night (they have them M,W,F) and it helped so

much to have support from these people. I found out Thursday that we

need a Starband and was freakin' but today I am doing much better

with it with all the support from the people here.

I do question why your baby would need an X-ray and CT scan. That

sounds overboard for positional plagio.

>

> Hello everyone. My name is Kristi and I have a 6.5 month old who I

> believe has positional plagio. The pediatrician is referring us to

a

> specialist which we will meet with this week. I am overcome with

> fear, blame, worry..UGH. I am just so mad that the AAP crams

> the " back to sleep " campaign down parents throats, but then this

> condition is rarely (if ever) mentioned or heard about. Upon doing

> some reading this morning, I found out that THOUSANDS of babies are

> diagnosed with this every year. And the cost of treatment..SHEESH!

> It's just frustrating..

>

> But my question is what do my husband and I need to expect with the

> first visit? I'd love to know kinda what to expect. Our

pediatrician

> said a CT Scan would be ordered.. but I don't even know what that

> procedure will be like for my little boy. Does it require

sedation??

> I am surely hoping no anesthesia is involved. Any advice/stories

> are very appreciated. Thanks so much. ~ Kristi

[Guest guest]

Hi Kristi,

Welcome to the club. See my message from Friday, message # 115924

( " Peds are the worst!). It has many of the same thoughts as yours. I

trusted the peds in saying that it would round out on its own too.

Good thing is that there is still time for our little babies for

correction. This website has been so helpful to me. I also went to

the Chat room on Friday night (they have them M,W,F) and it helped so

much to have support from these people. I found out Thursday that we

need a Starband and was freakin' but today I am doing much better

with it with all the support from the people here.

I do question why your baby would need an X-ray and CT scan. That

sounds overboard for positional plagio.

>

> Hello everyone. My name is Kristi and I have a 6.5 month old who I

> believe has positional plagio. The pediatrician is referring us to

a

> specialist which we will meet with this week. I am overcome with

> fear, blame, worry..UGH. I am just so mad that the AAP crams

> the " back to sleep " campaign down parents throats, but then this

> condition is rarely (if ever) mentioned or heard about. Upon doing

> some reading this morning, I found out that THOUSANDS of babies are

> diagnosed with this every year. And the cost of treatment..SHEESH!

> It's just frustrating..

>

> But my question is what do my husband and I need to expect with the

> first visit? I'd love to know kinda what to expect. Our

pediatrician

> said a CT Scan would be ordered.. but I don't even know what that

> procedure will be like for my little boy. Does it require

sedation??

> I am surely hoping no anesthesia is involved. Any advice/stories

> are very appreciated. Thanks so much. ~ Kristi

[Guest guest]

Hi Kristi,

Welcome to the group. Your son is at a great age to receive correction if a band is warranted. A specialist will do a visual exam. He may or may not take asymmetry measurements. Some can tell by sight and don't do formal measurments. Some may order a CT scan. Most likely your son will be sedated with an oral sedative. They are mild and wear off rather quickly. We've had quite a few infants have them. I'm sure some parents will post. We never saw a specialist. We went straight from the ped to CT. We also didn't have a CT scan.

mom to na

DOC Grad

South Carolina

www.thefilyaws.comKristi <sjack@...> wrote:

Hello everyone. My name is Kristi and I have a 6.5 month old who I believe has positional plagio. The pediatrician is referring us to a specialist which we will meet with this week. I am overcome with fear, blame, worry..UGH. I am just so mad that the AAP crams the "back to sleep" campaign down parents throats, but then this condition is rarely (if ever) mentioned or heard about. Upon doing some reading this morning, I found out that THOUSANDS of babies are diagnosed with this every year. And the cost of treatment..SHEESH! It's just frustrating..But my question is what do my husband and I need to expect with the first visit? I'd love to know kinda what to expect. Our pediatrician said a CT Scan would be ordered.. but I don't even know what that procedure will be like for my little boy. Does it require sedation?? I am

surely hoping no anesthesia is involved. Any advice/stories are very appreciated. Thanks so much. ~ KristiFor more plagio info

[Guest guest]

Hi Kristi,

Welcome to the group. Your son is at a great age to receive correction if a band is warranted. A specialist will do a visual exam. He may or may not take asymmetry measurements. Some can tell by sight and don't do formal measurments. Some may order a CT scan. Most likely your son will be sedated with an oral sedative. They are mild and wear off rather quickly. We've had quite a few infants have them. I'm sure some parents will post. We never saw a specialist. We went straight from the ped to CT. We also didn't have a CT scan.

mom to na

DOC Grad

South Carolina

www.thefilyaws.comKristi <sjack@...> wrote:

Hello everyone. My name is Kristi and I have a 6.5 month old who I believe has positional plagio. The pediatrician is referring us to a specialist which we will meet with this week. I am overcome with fear, blame, worry..UGH. I am just so mad that the AAP crams the "back to sleep" campaign down parents throats, but then this condition is rarely (if ever) mentioned or heard about. Upon doing some reading this morning, I found out that THOUSANDS of babies are diagnosed with this every year. And the cost of treatment..SHEESH! It's just frustrating..But my question is what do my husband and I need to expect with the first visit? I'd love to know kinda what to expect. Our pediatrician said a CT Scan would be ordered.. but I don't even know what that procedure will be like for my little boy. Does it require sedation?? I am

surely hoping no anesthesia is involved. Any advice/stories are very appreciated. Thanks so much. ~ KristiFor more plagio info

[Guest guest]

Kristi,

Welcome to the group. Everyone here knows your feelings of guilt,

fear and worry. Read all you can from the files and ask all the

questions you need to feel comfortable with the actions you take.

Above all remember that this is not your fault and try to keep the

thought that you are now doing what is best for your baby.That makes

you a good mommy. As you are on here more, you start to feel better

and as I know from experience, the people here are the best you can

find.

>

> Hello everyone. My name is Kristi and I have a 6.5 month old who I

> believe has positional plagio. The pediatrician is referring us to

a

> specialist which we will meet with this week. I am overcome with

> fear, blame, worry..UGH. I am just so mad that the AAP crams

> the " back to sleep " campaign down parents throats, but then this

> condition is rarely (if ever) mentioned or heard about. Upon doing

> some reading this morning, I found out that THOUSANDS of babies are

> diagnosed with this every year. And the cost of treatment..SHEESH!

> It's just frustrating..

>

> But my question is what do my husband and I need to expect with the

> first visit? I'd love to know kinda what to expect. Our

pediatrician

> said a CT Scan would be ordered.. but I don't even know what that

> procedure will be like for my little boy. Does it require

sedation??

> I am surely hoping no anesthesia is involved. Any advice/stories

> are very appreciated. Thanks so much. ~ Kristi

[Guest guest]

Welcome Kristi! We hear you on your frustration with peds and their

lack of education and attention to this problem!

Our ped only ordered regular xrays. The specialist was not much more

helpful than our ped. He gave us the " it'll round out " speech too.

In our case, I had to be assertive and TELL the specialist that my

husband and I thought long and hard about this, did our research blah

blah blah and didn't want to lose the window of opportunity that we

had left to try helmet therapy. We figured we had nothing to lose.

Colin was 9 mos. old when we finally got the band. In most cases,

this is up to the parents unless your baby has a severe case. My

son's pics are in the photos section (our plagio kids and

b & a/STARband). Good luck and please let us know how it goes!

Sue

Colin F., 16 mos.

STARband grad 9/04

>

> Hello everyone. My name is Kristi and I have a 6.5 month old who I

> believe has positional plagio. The pediatrician is referring us to

a

> specialist which we will meet with this week. I am overcome with

> fear, blame, worry..UGH. I am just so mad that the AAP crams

> the " back to sleep " campaign down parents throats, but then this

> condition is rarely (if ever) mentioned or heard about. Upon doing

> some reading this morning, I found out that THOUSANDS of babies are

> diagnosed with this every year. And the cost of treatment..SHEESH!

> It's just frustrating..

>

> But my question is what do my husband and I need to expect with the

> first visit? I'd love to know kinda what to expect. Our

pediatrician

> said a CT Scan would be ordered.. but I don't even know what that

> procedure will be like for my little boy. Does it require

sedation??

> I am surely hoping no anesthesia is involved. Any advice/stories

> are very appreciated. Thanks so much. ~ Kristi

[Guest guest]

Hey ! I just saw this post, glad you joined! If anyone knows about

digestion it is the people on this group!! I can't tell you how many messages I

have saved to be able to refer back to.

I have a question about Mason's vocabulary. Was there anything else that

happened around the time that he lost his vocabulary? Does he seem like he

understands what you are saying to him? Will he get you when he needs

something, will he point to it?

I still think there is food allergies there. There is a blood test that doctors

can run but I don't think it is all that accurate. It tests for something

different than the test I was telling you about. I have thought for a long time

now that ezema is allergy related. Two of my kids get it and now don't with

enzymes.

I know you are a great mother and are really needing help with your baby. Is

there anything else you can think of that may help us figure out what is going

on with him?

You are right about treating the root cause of health problems. That is the

only way they go away.

Okay, it is midnight. I had better get to bed. Good Luck and I will talk to

you soon!

ssky74 <ssky74@...> wrote:

Hi all-

I am a newbie and i am excited to find a group like this one who looks

at treating issues vs masking symptoms.

B- one of your incredible members recommended you all.

My son- 20 month old, has had chronic ear infections, even after tubes

were placed in sept 1, 2004. He has lost his entire vocabulary since

feb when he had the last massive infection.

he was on milk based formula until he was 16 months old. when tubes

were placed 9-1, they did a basic allergy test that came back OK - no

allergies present- which isn't true.

he has excema on his back, legs and face. he has stopped eating and

lost 5 pounds in 3 weeks. I would like to place him on enzymes but all

of this is new and forgein to me

help and advice appreciated

shelly

---------------------------------

[Guest guest]

I'm not sure if someone replied to your post or not

but a must read before starting is DeFelice's

Book... " Enzymes and Autism. " It will help answer a

lot of your questions.

--- ssky74 <ssky74@...> wrote:

> Hi all-

> I am a newbie and i am excited to find a group like

> this one who looks

> at treating issues vs masking symptoms.

> B- one of your incredible members

> recommended you all.

> My son- 20 month old, has had chronic ear

> infections, even after tubes

> were placed in sept 1, 2004. He has lost his entire

> vocabulary since

> feb when he had the last massive infection.

> he was on milk based formula until he was 16 months

> old. when tubes

> were placed 9-1, they did a basic allergy test that

> came back OK - no

> allergies present- which isn't true.

>

> he has excema on his back, legs and face. he has

> stopped eating and

> lost 5 pounds in 3 weeks. I would like to place him

> on enzymes but all

> of this is new and forgein to me

> help and advice appreciated

> shelly

>

>

>

>

>

>

__________________________________________________

[Guest guest]

In Feb. he got a severe ear infection. he was speech delayed at the time ( he

had maybe 10 words) and was not really picking up any new words. Then after the

infection, he gradually began to stop communicating all together. He stopped

saying anything- but makes noises. like a baby would who is maybe a year old (

he is 20 months old now). He was on time for his shots ( which i know is

something a lot of parents are debating and there is no point debating now as it

is already done). And the only reaction he ever had to vaccinations was a slight

fever- EXCEPT for his chicken pox vaccine- he was ill for a few days.

Now he is able to communicate with us by doing what we ask ( put your cup in

the sink, please....etc), he does not really point, more of just does what he

wants - gets his toys out, etc. He cries if he cannot get us to understand.

I will try to decribe his normal demeanor and our day to see if that helps

any....

he cries off and on in his sleep at night- sometimes he wakes up but mostly he

cries in his sleep. he wakes up and is ok- but will not eat. he is constantly

scratching his diaper area , (we have tried all brands of diapers including

cloth and nothing changed). he plays by himself and sometimes includes us. He

has light blue circles under his eyes and they never go away. he went from being

a big eater to living on next to nothing . he does drink milk and that is

usually all he will eat/drink in the course of a day.

any help is very appreciated as I simply have no idea what to do now

shelly

Bolling <lvchefmel@...> wrote:

Hey ! I just saw this post, glad you joined! If anyone knows about

digestion it is the people on this group!! I can't tell you how many messages I

have saved to be able to refer back to.

I have a question about Mason's vocabulary. Was there anything else that

happened around the time that he lost his vocabulary? Does he seem like he

understands what you are saying to him? Will he get you when he needs

something, will he point to it?

I still think there is food allergies there. There is a blood test that doctors

can run but I don't think it is all that accurate. It tests for something

different than the test I was telling you about. I have thought for a long time

now that ezema is allergy related. Two of my kids get it and now don't with

enzymes.

I know you are a great mother and are really needing help with your baby. Is

there anything else you can think of that may help us figure out what is going

on with him?

You are right about treating the root cause of health problems. That is the

only way they go away.

Okay, it is midnight. I had better get to bed. Good Luck and I will talk to

you soon!

ssky74 <ssky74@...> wrote:

Hi all-

I am a newbie and i am excited to find a group like this one who looks

at treating issues vs masking symptoms.

B- one of your incredible members recommended you all.

My son- 20 month old, has had chronic ear infections, even after tubes

were placed in sept 1, 2004. He has lost his entire vocabulary since

feb when he had the last massive infection.

he was on milk based formula until he was 16 months old. when tubes

were placed 9-1, they did a basic allergy test that came back OK - no

allergies present- which isn't true.

he has excema on his back, legs and face. he has stopped eating and

lost 5 pounds in 3 weeks. I would like to place him on enzymes but all

of this is new and forgein to me

help and advice appreciated

shelly

---------------------------------

[Guest guest]

> My son- 20 month old, has had chronic ear infections, even after tubes

> were placed in sept 1, 2004. He has lost his entire vocabulary since

> feb when he had the last massive infection.

> he was on milk based formula until he was 16 months old. when tubes

> were placed 9-1, they did a basic allergy test that came back OK - no

> allergies present- which isn't true.

Ear infections are commonly caused by milk intolerance. Have you ever

tried removing milk?

> he has excema on his back, legs and face.

Eczema is commonly caused by food intolerance. Sometimes enzymes

help, sometimes not.

>>he has stopped eating and

> lost 5 pounds in 3 weeks. I would like to place him on enzymes but all

> of this is new and forgein to me

> help and advice appreciated

Info here

http://www.enzymestuff.com/

Dana

[Guest guest]

>>He was on time for his shots ( which i know is something a lot of

parents are debating and there is no point debating now as it is

already done). And the only reaction he ever had to vaccinations was a

slight fever- EXCEPT for his chicken pox vaccine- he was ill for a few

days.

Consider metal toxicity and/or systemic virus issues.

http://www.danasview.net/chelate.htm

http://www.danasview.net/virus.htm

> he cries off and on in his sleep at night- sometimes he wakes up

but mostly he cries in his sleep. he wakes up and is ok- but will not

eat. he is constantly scratching his diaper area , (we have tried all

brands of diapers including cloth and nothing changed).

Consider food intolerances [or enzymes].

>>He has light blue circles under his eyes and they never go away.

Food intolerance, commonly milk and/or phenols

http://www.danasview.net/phenol.htm

>>he went from being a big eater to living on next to nothing . he

does drink milk and that is usually all he will eat/drink in the

course of a day.

Milk intolerance.

Try HNI AFP Peptizyde, see if that helps. If not, you might need to

remove the milk entirely

http://www.houstonni.com/

Dana

[Guest guest]

Great information! And you are right, vaccination is debated on this group and

even more on other groups. You are right, there isn't anything that can be done

about that and please know that no one here is going to give you a hard time

about that. Almost everyone of us has vaccinated at least one child, me

included. My oldest was until he became autistic. Lots of people have

different views on that and if you would ever like any information from a

different point of view just ask. There is tons out there!

What is important now is helping him now. I saw that Dana had replied, that is

wonderful. She is great for help, talk about been there and done that! I so

agree with Dana.

That is great that he understands what you are saying. The crying when you

don't understand is just major fustration. One thing that is easy would be to

take pictures of everything he may think to ask for. Write them all down first

so you remember each. Take pictures of everything from his favorite cup to him

giving you a hug. That way he can give you a picture of what he wants. You can

glue a magnet to each and put them on the fridge or just put them somewhere he

can get to them. This is a simplified PECS program that is commonly used with

any kids who are non verbal. I know the P is for picture and the E is for

exchange, can't remember the other two letters though! We did this with my son

and he loved it.

The waking during the night I would think could be his belly hurting him. Poor

digestion can do that. I think I told you about how I would do the same thing.

Enzymes really helped there. The circles also are bad digestion or food

allergy. One of my kids has those as well as little red bumps around his mouth.

We are trying good vitamins and enzymes with him.

I wonder if anyone else also wonders if the itching in the diaper area could be

yeast??? With all the infections did he get a lot of antibiotics as well?

Yeast is something that can cause problems without actually causing what we

think of as a yeast infection. What happens with all the antibiotics is that

they kill all the good bacteria that we need along with the bad bacteria. There

is a balance that we each need with yeast and bacteria and when too many

bacteria are gone the yeast overgrow causing problems. That is sometimes easy

to fix, other times it will be something you will have to fight pretty often.

Going on enzymes, he may have what we call die-off reactions. That is what

happens when some of the yeast die, if he has this it will be a good thing. You

can give the good bacteria back to him with probiotics. Lots of companies make

really good ones.

One thing you will quickly learn is this group is all about natural supplements.

Personally I have a small store in my house! We treat just about everything

with one or more supplements. It is just what works best for our kids. Just

ask about any questions you may have about any supplements.

If enzymes don't correct his speech, what I also would consider is making your

doctor give you a referal to get your son tested for developmental delay. I am

so not saying there is anything wrong with him but by getting him tested you

just may qualify for services like speech therapy. If a child is given a

diagnosis the state is obligated to pay for these services as well. The earlier

he gets any services he may need the better. Even if it for them to get you set

up with a good PECS system. But please remember that it is true, kids develop

and learn at very different rates. But having speech and then losing it should

be a big red flag for your doctor. For me though I would rather my son get some

diagnosis that would let him get some services and then lose that diagnosis

later. This is just my opinion, please only take what interests you!!!

Please let us know how he does. Will be praying for him!

and Sowell <ssky74@...> wrote:

In Feb. he got a severe ear infection. he was speech delayed at the time ( he

had maybe 10 words) and was not really picking up any new words. Then after the

infection, he gradually began to stop communicating all together. He stopped

saying anything- but makes noises. like a baby would who is maybe a year old (

he is 20 months old now). He was on time for his shots ( which i know is

something a lot of parents are debating and there is no point debating now as it

is already done). And the only reaction he ever had to vaccinations was a slight

fever- EXCEPT for his chicken pox vaccine- he was ill for a few days.

Now he is able to communicate with us by doing what we ask ( put your cup in the

sink, please....etc), he does not really point, more of just does what he wants

- gets his toys out, etc. He cries if he cannot get us to understand.

I will try to decribe his normal demeanor and our day to see if that helps

any....

he cries off and on in his sleep at night- sometimes he wakes up but mostly he

cries in his sleep. he wakes up and is ok- but will not eat. he is constantly

scratching his diaper area , (we have tried all brands of diapers including

cloth and nothing changed). he plays by himself and sometimes includes us. He

has light blue circles under his eyes and they never go away. he went from being

a big eater to living on next to nothing . he does drink milk and that is

usually all he will eat/drink in the course of a day.

any help is very appreciated as I simply have no idea what to do now

shelly

Bolling <lvchefmel@...> wrote:

Hey ! I just saw this post, glad you joined! If anyone knows about

digestion it is the people on this group!! I can't tell you how many messages I

have saved to be able to refer back to.

I have a question about Mason's vocabulary. Was there anything else that

happened around the time that he lost his vocabulary? Does he seem like he

understands what you are saying to him? Will he get you when he needs

something, will he point to it?

I still think there is food allergies there. There is a blood test that doctors

can run but I don't think it is all that accurate. It tests for something

different than the test I was telling you about. I have thought for a long time

now that ezema is allergy related. Two of my kids get it and now don't with

enzymes.

I know you are a great mother and are really needing help with your baby. Is

there anything else you can think of that may help us figure out what is going

on with him?

You are right about treating the root cause of health problems. That is the

only way they go away.

Okay, it is midnight. I had better get to bed. Good Luck and I will talk to

you soon!

ssky74 <ssky74@...> wrote:

Hi all-

I am a newbie and i am excited to find a group like this one who looks

at treating issues vs masking symptoms.

B- one of your incredible members recommended you all.

My son- 20 month old, has had chronic ear infections, even after tubes

were placed in sept 1, 2004. He has lost his entire vocabulary since

feb when he had the last massive infection.

he was on milk based formula until he was 16 months old. when tubes

were placed 9-1, they did a basic allergy test that came back OK - no

allergies present- which isn't true.

he has excema on his back, legs and face. he has stopped eating and

lost 5 pounds in 3 weeks. I would like to place him on enzymes but all

of this is new and forgein to me

help and advice appreciated

shelly

---------------------------------

[Guest guest]

My dd picked up sign language so easily but had no interest in PECS

(pictures) A really cool idea with learning sign language with kids is

videos we

have _www.signingtime.com_ (http://www.signingtime.com) tapes and my girl

loves em! She uses over 125 signs now! She actually out learned a speech

therapist so we had to get her another. Shes almost 4 1/2 and still not

talking so the signs are important. The teachers in her class play the tapes

for

all the kids to learn and they all love em! Even those that are vocal can

learn this second language! Its not difficult just different. Most make

sense, the signs that is. And remember most of our kids arent exact with their

hand movements so they sign but not perfectly but its amazing to have a

conversation with ur child and it not being vocal. Like at the stores I can

tell her to stop or no or put that down or something and I dont have to say it

a hundred time and other parents look at me wondering why I cant control my

child instead they are amazed that she knows sign language and wish want to

teach their kids too!! btw I am in no way connected to signing time or make

anything from referring peeps there.

The PECS board we made ourselves. We just used a polariod camera and took

pictures of the basics to start and stuck them on a board in the main room so

she could come pull them off and show me. Guess it just took work for her

to walk over and look thru the pictures to find what she wants.

Good luck!!!!!!

*~*~*~*~*~*~*~*

Lena

*~*~*~*~*~*~*~*

[Guest guest]

he is about 1 year behind developmentally and he starts speech and occupational

therapy next friday. We are starting sign language and it is hillarious seeing

us try to remember what we want to sign. we sign and speak so he has both to

refer to. he has a significant hearing impaiment in his right ear and hopefully

the operation on wednesday will correct it.

we have given his acidopholous ( sp?) when he has been on antibiotics and i

keep some in the fridge - is that some thing to continue regularly?

I have heard of probiotics- and sounds like i need to look deeper into them.

I have heard of the PECS but not much about them. A lady in another group i

beong to mentioned that she did that with their son.

You know- a lady that i met recently asked my about yeast when she saw mason

scratching in his diaper area.

I bought the enzymes this morning.the AFP and no Phenol. i am hopeful that this

is the right path for us. does i start him on a full dose... work my way up to a

dose? what IS the dose i give to a baby?

you mentioned a die off reaction? how will i know? will he get sick to his

stomach?

i have removed him from dairy once, but i put him back on.... how lond does it

typically take to see a difference?

shelly

Bolling <lvchefmel@...> wrote:

Great information! And you are right, vaccination is debated on this group and

even more on other groups. You are right, there isn't anything that can be done

about that and please know that no one here is going to give you a hard time

about that. Almost everyone of us has vaccinated at least one child, me

included. My oldest was until he became autistic. Lots of people have

different views on that and if you would ever like any information from a

different point of view just ask. There is tons out there!

What is important now is helping him now. I saw that Dana had replied, that is

wonderful. She is great for help, talk about been there and done that! I so

agree with Dana.

That is great that he understands what you are saying. The crying when you

don't understand is just major fustration. One thing that is easy would be to

take pictures of everything he may think to ask for. Write them all down first

so you remember each. Take pictures of everything from his favorite cup to him

giving you a hug. That way he can give you a picture of what he wants. You can

glue a magnet to each and put them on the fridge or just put them somewhere he

can get to them. This is a simplified PECS program that is commonly used with

any kids who are non verbal. I know the P is for picture and the E is for

exchange, can't remember the other two letters though! We did this with my son

and he loved it.

The waking during the night I would think could be his belly hurting him. Poor

digestion can do that. I think I told you about how I would do the same thing.

Enzymes really helped there. The circles also are bad digestion or food

allergy. One of my kids has those as well as little red bumps around his mouth.

We are trying good vitamins and enzymes with him.

I wonder if anyone else also wonders if the itching in the diaper area could be

yeast??? With all the infections did he get a lot of antibiotics as well?

Yeast is something that can cause problems without actually causing what we

think of as a yeast infection. What happens with all the antibiotics is that

they kill all the good bacteria that we need along with the bad bacteria. There

is a balance that we each need with yeast and bacteria and when too many

bacteria are gone the yeast overgrow causing problems. That is sometimes easy

to fix, other times it will be something you will have to fight pretty often.

Going on enzymes, he may have what we call die-off reactions. That is what

happens when some of the yeast die, if he has this it will be a good thing. You

can give the good bacteria back to him with probiotics. Lots of companies make

really good ones.

One thing you will quickly learn is this group is all about natural supplements.

Personally I have a small store in my house! We treat just about everything

with one or more supplements. It is just what works best for our kids. Just

ask about any questions you may have about any supplements.

If enzymes don't correct his speech, what I also would consider is making your

doctor give you a referal to get your son tested for developmental delay. I am

so not saying there is anything wrong with him but by getting him tested you

just may qualify for services like speech therapy. If a child is given a

diagnosis the state is obligated to pay for these services as well. The earlier

he gets any services he may need the better. Even if it for them to get you set

up with a good PECS system. But please remember that it is true, kids develop

and learn at very different rates. But having speech and then losing it should

be a big red flag for your doctor. For me though I would rather my son get some

diagnosis that would let him get some services and then lose that diagnosis

later. This is just my opinion, please only take what interests you!!!

Please let us know how he does. Will be praying for him!

and Sowell <ssky74@...> wrote:

In Feb. he got a severe ear infection. he was speech delayed at the time ( he

had maybe 10 words) and was not really picking up any new words. Then after the

infection, he gradually began to stop communicating all together. He stopped

saying anything- but makes noises. like a baby would who is maybe a year old (

he is 20 months old now). He was on time for his shots ( which i know is

something a lot of parents are debating and there is no point debating now as it

is already done). And the only reaction he ever had to vaccinations was a slight

fever- EXCEPT for his chicken pox vaccine- he was ill for a few days.

Now he is able to communicate with us by doing what we ask ( put your cup in the

sink, please....etc), he does not really point, more of just does what he wants

- gets his toys out, etc. He cries if he cannot get us to understand.

I will try to decribe his normal demeanor and our day to see if that helps

any....

he cries off and on in his sleep at night- sometimes he wakes up but mostly he

cries in his sleep. he wakes up and is ok- but will not eat. he is constantly

scratching his diaper area , (we have tried all brands of diapers including

cloth and nothing changed). he plays by himself and sometimes includes us. He

has light blue circles under his eyes and they never go away. he went from being

a big eater to living on next to nothing . he does drink milk and that is

usually all he will eat/drink in the course of a day.

any help is very appreciated as I simply have no idea what to do now

shelly

Bolling <lvchefmel@...> wrote:

Hey ! I just saw this post, glad you joined! If anyone knows about

digestion it is the people on this group!! I can't tell you how many messages I

have saved to be able to refer back to.

I have a question about Mason's vocabulary. Was there anything else that

happened around the time that he lost his vocabulary? Does he seem like he

understands what you are saying to him? Will he get you when he needs

something, will he point to it?

I still think there is food allergies there. There is a blood test that doctors

can run but I don't think it is all that accurate. It tests for something

different than the test I was telling you about. I have thought for a long time

now that ezema is allergy related. Two of my kids get it and now don't with

enzymes.

I know you are a great mother and are really needing help with your baby. Is

there anything else you can think of that may help us figure out what is going

on with him?

You are right about treating the root cause of health problems. That is the

only way they go away.

Okay, it is midnight. I had better get to bed. Good Luck and I will talk to

you soon!

ssky74 <ssky74@...> wrote:

Hi all-

I am a newbie and i am excited to find a group like this one who looks

at treating issues vs masking symptoms.

B- one of your incredible members recommended you all.

My son- 20 month old, has had chronic ear infections, even after tubes

were placed in sept 1, 2004. He has lost his entire vocabulary since

feb when he had the last massive infection.

he was on milk based formula until he was 16 months old. when tubes

were placed 9-1, they did a basic allergy test that came back OK - no

allergies present- which isn't true.

he has excema on his back, legs and face. he has stopped eating and

lost 5 pounds in 3 weeks. I would like to place him on enzymes but all

of this is new and forgein to me

help and advice appreciated

shelly

---------------------------------

[Guest guest]

the accupuncturist i see recommended we all be tested for toxicity- but she

never specified any thing.

about the viral aspect, my oldest child has viral problems. (she has chronic

shingles and took valtrex for a short time) .

which tests do you specifically recommend through Great Smokies Diagnostic

Laboratory? i looked through the lists and there wer a lot of options that are

unfamiliar to me

shelly

danasview <danasview@...> wrote:

>>He was on time for his shots ( which i know is something a lot of

parents are debating and there is no point debating now as it is

already done). And the only reaction he ever had to vaccinations was a

slight fever- EXCEPT for his chicken pox vaccine- he was ill for a few

days.

Consider metal toxicity and/or systemic virus issues.

http://www.danasview.net/chelate.htm

http://www.danasview.net/virus.htm

> he cries off and on in his sleep at night- sometimes he wakes up

but mostly he cries in his sleep. he wakes up and is ok- but will not

eat. he is constantly scratching his diaper area , (we have tried all

brands of diapers including cloth and nothing changed).

Consider food intolerances [or enzymes].

>>He has light blue circles under his eyes and they never go away.

Food intolerance, commonly milk and/or phenols

http://www.danasview.net/phenol.htm

>>he went from being a big eater to living on next to nothing . he

does drink milk and that is usually all he will eat/drink in the

course of a day.

Milk intolerance.

Try HNI AFP Peptizyde, see if that helps. If not, you might need to

remove the milk entirely

http://www.houstonni.com/

Dana

---------------------------------

[Guest guest]

That is awesome that you are going to get those services, you are one step ahead

of me!!!

Probiotics are great with antibiotic use, it helps replace the good buggies. It

would depend on how bad a yeast problem if you can get away with that one alone

or if you need different strains. You may also need something to actually go in

and kill the yeast. Probiotics will be good to after his surgery. Many

surgeries they give them to prevent infection.

That is cool that you have heard of PECS, my son really liked that. You can do

it very simply with pictures you take yourself to companies who sell really

sophisticated kits. It would depend on how he progresses how much you want to

spend. Signing is also great. It impowers him with communication.

Yeast die-off can be very different for many kids. The best thing would be to

check out Dana's website at www.danasview.com I would bet she has information

on that. Also check out 's website at www.enzymestuff.com There should be

what you need there. She also has a link to her books on that site. I have the

autism one and it is really good. She explains a lot about what enzymes are and

what they do. She is a very talented writer. Those two sites and the links

that Dana gave you earlier are very important. Her thought about the metals is

interesting as well. Is it possible to find out exactly what brand of vaccines

he got and when?? That information can be used to find out what he was exposed

to and give you an idea if maybe there is something there. Just a thought.

Definitely start slow. If you got capsules, try like 1/8 to 1/4 of a capsule to

start with. Make sure he gets it everytime he eats or drinks anything. After a

day or two you can start increasing it. I honestly am not sure exactly how much

you should work up to. I would talk to the company on that one or maybe someone

else will chime in with more info. My son is much bigger than yours and there

may be different factors that are important in finding a dosing amount. If you

start seeing negative effects that worry you post for help and ease off the

dosing. Some kids like mine show no reaction, they just get better. Some have

more difficulty adjusting. Everything will be fine though! I would think you

should see postive effects soon. I know when I put Kelsey on them the effects

were all but immediate. It may take a day or so don't worry. Sometimes it

takes until you get to full dose. It all depends on the child.

I wish you well, and I am so excited to see what this does for your baby!

Yell if you need anything anytime!

and Sowell <ssky74@...> wrote:

he is about 1 year behind developmentally and he starts speech and occupational

therapy next friday. We are starting sign language and it is hillarious seeing

us try to remember what we want to sign. we sign and speak so he has both to

refer to. he has a significant hearing impaiment in his right ear and hopefully

the operation on wednesday will correct it.

we have given his acidopholous ( sp?) when he has been on antibiotics and i keep

some in the fridge - is that some thing to continue regularly?

I have heard of probiotics- and sounds like i need to look deeper into them.

I have heard of the PECS but not much about them. A lady in another group i

beong to mentioned that she did that with their son.

You know- a lady that i met recently asked my about yeast when she saw mason

scratching in his diaper area.

I bought the enzymes this morning.the AFP and no Phenol. i am hopeful that this

is the right path for us. does i start him on a full dose... work my way up to a

dose? what IS the dose i give to a baby?

you mentioned a die off reaction? how will i know? will he get sick to his

stomach?

i have removed him from dairy once, but i put him back on.... how lond does it

typically take to see a difference?

shelly

__________________________________________________