New to group

[Guest guest]

hi teri!! and unfortunatly welcome to our group!! the people here are very

nice and help me through alot. i have an inflammatory arthritis now according

to the nurse. she said it depends on which page she turns to!!! i am trying

to get back on remicade, but first i need an ok from the cardiologist because

i was in the e/r last week with chest pains. kathy

[Guest guest]

Dear Teri, I'm glad you found us; we all enjoy having new people in the group.

You mentioned Panniculitis - I've seen that mentioned a few times before - can

you tell me what it is?

Thanks. Hope you're feeling better.

Jo

[ ] New To Group

I wanted to introduce myself to the group. I have had Rheumatoid

Arthritis for about 1/1-2 years. I am currently on Remicade and

taking Arava, Prednisone, and Tylenol with Codeine when needed. I

had a biopsy done last week for a terrible purple, hive-like rash

down my sides and on my arms and legs. The doctors think it is

Panniculitis. I'll get the results this Friday when I have the

stitches removed.

I very much enjoy reading the posts here. It's a comfort to know

there are others out there who understand...

Thanks,

Teri

[Guest guest]

Teri,

Welcome from another Tery. You make the third one, however, we all spell it

different. There is Terry (male) in Ohio (I think - fog setting in) and me Tery

(female) in ville.

This is a great support group. We all share our common aches and pains and good

times too. Again, welcome. Tery - ville

[Guest guest]

Hi Tery- Glad to have you, I love it here. The people here are

really caring and understanding.

> I wanted to introduce myself to the group. I have had Rheumatoid

> Arthritis for about 1/1-2 years. I am currently on Remicade and

> taking Arava, Prednisone, and Tylenol with Codeine when needed. I

> had a biopsy done last week for a terrible purple, hive-like rash

> down my sides and on my arms and legs. The doctors think it is

> Panniculitis. I'll get the results this Friday when I have the

> stitches removed.

>

> I very much enjoy reading the posts here. It's a comfort to know

> there are others out there who understand...

>

> Thanks,

> Teri

[Guest guest]

Teri: Welcome to the group. You will not find another group that is as

caring. Keep us posted on what is going on and remember we are here for you.

Jan

[Guest guest]

Hi Tery,

Thanks to you and everyone else for their welcomes. I am from San

, California. I am 41 y.o. with a 12 y.o. daughter. I have been

back working full-time for about 7 months now. I have had the last

two weeks off, however, and have felt better. When I don't have the

stress of work, and am able to rest when I need to, the throbbing

pain and ease of movement seems to improve. It makes me wonder if it

is worth it to go back to work full-time....I hope this disease will

go into remission. Is that a silly wish? I know a couple of people

who had a difficult time for the first few years, and went into

remission. All they take is an anti-inflammatory to keep everything

in check. Has anyone in this group gone into remission?

Thanks again,

Teri

> Teri,

> Welcome from another Tery. You make the third one, however, we all

spell it different. There is Terry (male) in Ohio (I think - fog

setting in) and me Tery (female) in ville.

>

> This is a great support group. We all share our common aches and

pains and good times too. Again, welcome. Tery - ville

[Guest guest]

Hi Jo,

I don't know much about Panniculitis other than it is an inflammation

of the fatty tissue. I read it can appear in connective tissue

diseases but is rare with Rheumatoid Arthritis. I will find out more

this Friday when I have the stitches removed from the biopsy, and let

you know.

Thanks,

Teri

> Dear Teri, I'm glad you found us; we all enjoy having new people

in the group. You mentioned Panniculitis - I've seen that mentioned

a few times before - can you tell me what it is?

> Thanks. Hope you're feeling better.

> Jo

[Guest guest]

Teri

I am frim San , was born in Mountan View, grew up in Sunnyvale,

and lived in San , Santa Clara, Cupertino, and finally Saratoga

befor I moved here to TN.

My whole family is still there. Perhaps if I ever come for a visit

we can meet! That would be cool.

A fellow San an

> > Teri,

> > Welcome from another Tery. You make the third one, however, we

all

> spell it different. There is Terry (male) in Ohio (I think - fog

> setting in) and me Tery (female) in ville.

> >

> > This is a great support group. We all share our common aches and

> pains and good times too. Again, welcome. Tery - ville

[Guest guest]

Dear Teri and -

Just a quick note, I lived in Monterey-Carmel area or 4

years back in 1975 and Loved every minute of it. Liz

[ ] Re: New To Group

> Teri

>

> I am frim San , was born in Mountan View, grew up in

Sunnyvale,

> and lived in San , Santa Clara, Cupertino, and finally

Saratoga

> befor I moved here to TN.

>

> My whole family is still there. Perhaps if I ever come

for a visit

> we can meet! That would be cool.

>

> A fellow San an

>

>

>

>

> > > Teri,

> > > Welcome from another Tery. You make the third one,

however, we

> all

> > spell it different. There is Terry (male) in Ohio (I

think - fog

> > setting in) and me Tery (female) in ville.

> > >

> > > This is a great support group. We all share our

common aches and

> > pains and good times too. Again, welcome. Tery -

ville

>

>

>

[Guest guest]

Oh and I used to go to the San Flea Market....It was

HUGE, Is is still there?

[ ] Re: New To Group

>

>

> > Teri

> >

> > I am frim San , was born in Mountan View, grew up in

> Sunnyvale,

> > and lived in San , Santa Clara, Cupertino, and

finally

> Saratoga

> > befor I moved here to TN.

> >

> > My whole family is still there. Perhaps if I ever come

> for a visit

> > we can meet! That would be cool.

> >

> > A fellow San an

> >

> >

> >

> >

> > > > Teri,

> > > > Welcome from another Tery. You make the third one,

> however, we

> > all

> > > spell it different. There is Terry (male) in Ohio (I

> think - fog

> > > setting in) and me Tery (female) in ville.

> > > >

> > > > This is a great support group. We all share our

> common aches and

> > > pains and good times too. Again, welcome. Tery -

> ville

> >

> >

> >

[Guest guest]

Hi Sheila, Thanks for writing to the group. I am not familiar with Soto's

Syndrome. Neurological apraxia is the biggest issue for most of the children

here on the list. Apraxia children don't talk unless they have intense

speech therapy at least 3 or 4 times weekly by a qualified speech therapist.

Each child is different and many have side issues with the apraxia. Go to the

websites listed at the bottom of most of the mail and you will see a ton of

information. If you have any trouble with the websites let me know. I will

be glad to help. Best wishes, Patty

[Guest guest]

Hi Shiela..the best advice I can give you is to find a

developmental pediatrician and speech therapist that

" specialize " in apraxia...also check with your local

school district and special child services to see if

you can get information...I've been reading alot about

apraxia but I find thay my son exhibits some signs so

sometimes I get confused and discouraged but I realize

it is a hard diagnosis to make...my son is 2 1/2 and

has just been recently saying " no " , " baba " , " mama " and

" dada " ..he babbles at times and the older he gets the

more frustarated he gets...anyway goodluck and hope

this litle info helps...JoAnn

--- hunterjo@... wrote:

> Hi my name is Sheila I have 2 children my youngest

> (21mths) has been

> diagnosed with a genetic disorder called sotos

> syndrome. But the

> reason i have joined this group is because i'm very

> interested in

> learning more about apraxia. My son dose have a

> speech delay he is

> only saying a few words but i don't really think

> they are

> purposeful would love to hear any advice anyone has

> to give. I want

> to do what ever i can to give my son what ever will

> help him.Thank you

> for listening (or reading that is ) Sheila

>

>

__________________________________________________

[Guest guest]

Hi All -

This is my first posting to this group and I'm hoping to find some very useful

information here. (I think I already have).

My daughter is 6 1/2 years old and autistic. We have had BM problems for YEARS,

and finally found out that she has

encopresis. We are currently on a mineral oil regimen to help bring her

intestines back to there normal size and to clear

out any old, undigested waste in her digestive tract.

We are also in the process of having her tested for Gluten/Casein Peptides thru

Great Plains Labs. We have not received the

results yet. We do feel that both Gluten and Casein cause problems for her.

We have removed most of the Gluten from her diet as well as Casein, and have

seen some improvement. Unfortunately, she has

always had a limited diet and now, she barely eats anything. She is at a normal

weight for her age, but I know she is not

getting the nutrition she needs.

My husband wants to try the product " Peptizyde " in hopes that we will be able to

expand her diet. I'm willing to give it a

try, but I'd like to hear from anyone who has used this and how they used it.

Of course, i'd like her to start eating more fruits and vegetables, but it is

literally impossible.

Anyhow, any help would be so greatly appreciated...

thanks in advance!

Penny

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

" Just remember this: Plenty of Horsepower, No Traction " - R. S. on

" If a man does not keep pace with his companions, perhaps it is because he hears

a different drummer.

Let him step to the music he hears, however measured or far away. "

--Henry Thoreau

[Guest guest]

Penny,

Welcome to the group. My son's story is in the " Files " section to

the left in the yellow box. Anyone who would like for me to forward

it to their e-mail, just ask. My son just turned eight and has

Asperger's Syndrome. He has been helped dramatically by using both

Peptizyde and HN-Zyme Prime.

Kelley

> Hi All -

>

> This is my first posting to this group and I'm hoping to find some

very useful information here. (I think I already have).

>

> My daughter is 6 1/2 years old and autistic. We have had BM

problems for YEARS, and finally found out that she has

> encopresis. We are currently on a mineral oil regimen to help bring

her intestines back to there normal size and to clear

> out any old, undigested waste in her digestive tract.

>

> We are also in the process of having her tested for Gluten/Casein

Peptides thru Great Plains Labs. We have not received the

> results yet. We do feel that both Gluten and Casein cause problems

for her.

>

> We have removed most of the Gluten from her diet as well as Casein,

and have seen some improvement. Unfortunately, she has

> always had a limited diet and now, she barely eats anything. She

is at a normal weight for her age, but I know she is not

> getting the nutrition she needs.

>

> My husband wants to try the product " Peptizyde " in hopes that we

will be able to expand her diet. I'm willing to give it a

> try, but I'd like to hear from anyone who has used this and how

they used it.

>

> Of course, i'd like her to start eating more fruits and vegetables,

but it is literally impossible.

>

> Anyhow, any help would be so greatly appreciated...

>

> thanks in advance!

>

> Penny

> --------------------------------------------------------

> " Just remember this: Plenty of Horsepower, No Traction " - R. S.

on

>

> " If a man does not keep pace with his companions, perhaps it is

because he hears a different drummer.

> Let him step to the music he hears, however measured or far away. "

> --Henry Thoreau

[Guest guest]

HI Penny,

welcome!!!

> My daughter is 6 1/2 years old and autistic. We have had BM

problems for YEARS, and finally found out that she has

> encopresis. We are currently on a mineral oil regimen to help bring

her intestines back to there normal size and to clear

> out any old, undigested waste in her digestive tract.

We just found out that is what my 7 1/2 year old son has. We have

been giving 400 mg of mag, 2 Peptizyde between meals, and extra water

to help. Also I read on two site that the child needs to re-train

there system and so they should go to the bathroom and " try " for 10

minutes about 10 minutes after they eat to take advantage of the

natural muscle movements. This re-training and color shrinking should

be done for about 6 months or more. So far he is regular if we keep

this up, but he still can't feel when he needs to go. Are you doing

anything along these lines?

> We have removed most of the Gluten from her diet as well as Casein,

and have seen some improvement. Unfortunately, she has

> always had a limited diet and now, she barely eats anything. She

is at a normal weight for her age, but I know she is not

> getting the nutrition she needs.

This same son also used to be quite thin and tall for his age. He

would only like about 5-6 different things and ate incredibly slow.

We have used Peptizyde and the Zyme Prime for 3 months now. He has

gained 5 pounds, eats about 30 foods and finishes in a reasonable

amount of time (about 15-20 minutes instead of 60-90!). He also won't

fuss much about eating foods he doesn't like but we say he needs to

try. So we are quite thrilled with it.

We tried the GFCF diet for 2 months but it was not working out very

well. We ran into a problem with the school lunch thing, snacks at

friends' houses, etc. Both boys wanted to eat with their friends. So

the enzymes were quite a big relief in that area. My other son is

also PDD/SID and he improved immensely on Peptizyde too. He had

different symptoms (you would think the two boys could be a little

more coordinated on this,LOL) and those improved as well. They used

to complain of headaches a lot and that has virtually stopped. The

tantrums and whininess and non-transitioning, and over sensitivity to

everything took a dramatic nose-dive. Also, we have quit almost all

of the 15 or so supplements we were getting, except for 5, because

they are getting so much more nutrition from their food. So of

course, we are very pleased and hope you see the type of results you

want.

Glad you are here.

.

[Guest guest]

They do have an enzyme product called Similace Jr. in local health food stores,

but I have found the peptizyde to be a much more effective product for us.

Usually Devin will get them to you in several days and they are about the same

price as those you find at your local store. If however, you are allowing your

daughter to cheat once a month- you are never really clearing her system of

gluten, which can takes months to completely clear the system. And yes, we have

seen food reactions take days to appear. My daughter has had her diagnosis

completely reversed and I attribute that tot he gfcf diet, but we try to be 100%

as best we can.

I have an 11 year old . She has been GFCF for about a year.

I let her cheat occasionally -once a month at the most. The last

time was pasta ot a restaraunt & she had no reaction for a week. Now

I am not sure it was the pasta as a week is a long time. Any

feedback?

I let her have birthday cake -chocolate mousse-on her birthday in May

and she hit another child in the head with a toy and got hives.

Where do I get the enzymes & how much do I give her? She is

petite-60 lbs. She is still behavioral though better. She still has

ADHD and stims. I prefer going to the local stores if possible.

Thanks

Joan

[Guest guest]

Hi Joan, and welcome.

I just sent you two documents which are located in the Files section.

The first is Dosing Guidelines, and the second is a parents guide to

Selecting Enzyme Products. Both are general in nature and do not

refer to any specific product.

The difference I see in the two instances you mentioned are that cake

may contain dairy where as pasta wouldn't. Chocolate mousse would

contain more milk than regular cake, right? Also chocolate contains

caffeine and is very phenolic, so either of those things might be a

trigger. Or the cake contains more gluten than the pasta. This is a

guess on my part here.

Can you give a little better description of the hives. Is this usual?

Is it particularly bad and irritates her? Hives seems to be a symptom

of a true allergy and not an intolerance. Enzymes work far better on

an intolerance because these are usual based on insufficiently broken

down proteins. I would be VERY cautious if it is a true allergy.

I get my enzymes at www.houstonni.com. I use Peptizyde because this

has been very effective with dairy - that is what my 2 boys and I are

most reactive from. I have tried 3 other brands. You can also look at

www.Kirkmanlabs.com, or www.serenaid.com. The best health food store

brand (in my opinion and that of our local HFS guides) are those from

EnzyMedica. You can read about them at www.enzymedica.com. However,

most HFS brands are not specifically designed for those interested in

breaking down the casein/gluten proteins as are the products from the

other three sites. (The ones I use are the least expensive too and

will 3 people using it regularly, that starts to add up.)

Hope this helps. Just post any other questions as you get started.

.

[Guest guest]

Hello-

We were gfcf for 3 mths' during that time, at 5 wks we had a casien infraction,

Taryn then 2.7 dunked her hand in Daddy's latte and licked it (several times)

before caught.

The next morning she exploded into hives (never had them before) RED ears,

hands, even feet. We had her allergie test (scratch test) -nothing. When we went

on chembalance I was not so nervous about adding in gluten again but was sure

casien would make her blow up again. After a week a glutten and a little

spaciness we added back in casien. We had some stimming (spinning and hand

flapping), spaciness, but after a couple weeks after staring the electrolytes it

all faded away. I asked at CB why a child would have hive like that then

not the next time. She said it could be the caffiene/casien combo- but that we

may never know. Now she has regular milk with every meal without problems.

Though I'm keeping her off latte's for a few more years.

-

Chocolate mousse would

contain more milk than regular cake, right? Also chocolate contains

caffeine and is very phenolic, so either of those things might be a

trigger.

Can you give a little better description of the hives. Is this usual?

Is it particularly bad and irritates her? Hives seems to be a symptom

of a true allergy and not an intolerance.

[Guest guest]

>>>Though I'm keeping her off latte's for a few more years.

That is so funny, .

.

[Guest guest]

has a good point (is that 2 for today?? LOL). Clearing the body

of problematic peptides is the point. So staying 100% GFCF the best

you can will produce the best results. Using enzymes needs to be as

consistently as possible, of a combination of the two - GFCF food and

enzymes for infractions. Many people find they also need to remove

soy, and perhaps corn too. If you use the enzymes to cover these (or

eliminate all the soy or corn containing food), you may see greater

improvement than just GFCF alone. Many of these kids also have

problems processing phenols, too. Just some ideas to think about.

Most people receive their enzymes pretty quickly.

.

--- In @y..., " renee schlotzhauer " <renee1dat@m...>

wrote:

> They do have an enzyme product called Similace Jr. in local health

food stores, but I have found the peptizyde to be a much more

effective product for us. Usually Devin will get them to you in

several days and they are about the same price as those you find at

your local store. If however, you are allowing your daughter to cheat

once a month- you are never really clearing her system of gluten,

which can takes months to completely clear the system. And yes, we

have seen food reactions take days to appear. My daughter has had her

diagnosis completely reversed and I attribute that tot he gfcf diet,

but we try to be 100% as best we can.

>

>

>

> I have an 11 year old . She has been GFCF for about a

year.

> I let her cheat occasionally -once a month at the most. The last

> time was pasta ot a restaraunt & she had no reaction for a week.

Now

> I am not sure it was the pasta as a week is a long time. Any

> feedback?

>

> I let her have birthday cake -chocolate mousse-on her birthday in

May

> and she hit another child in the head with a toy and got hives.

>

> Where do I get the enzymes & how much do I give her? She is

> petite-60 lbs. She is still behavioral though better. She still

has

> ADHD and stims. I prefer going to the local stores if possible.

>

> Thanks

>

> Joan

>

>

>

>

>

>

>

>

>

[Guest guest]

> I have an 11 year old . She has been GFCF for about a year.

> I let her cheat occasionally -once a month at the most. The last

> time was pasta ot a restaraunt & she had no reaction for a week.

Now

> I am not sure it was the pasta as a week is a long time. Any

> feedback?

I have let my kids " cheat " occasionally. They have been gfcf for 20

months. I see the reaction later that day or sometimes the next day,

usually lasting about 3-4 days depending on what foods I allowed. But

your daughter is a lot older than my kids, so I don't know if my kids'

experience is relevant.

>

> I let her have birthday cake -chocolate mousse-on her birthday in

May

> and she hit another child in the head with a toy and got hives.

One of my kids has phenol issues, which chocolate would qualify. In

some kids it can cause aggression like you describe. Here is my

phenol information.

http://home.pacbell.net/cscomp/phenol.htm

Another of my kids has hives issues. If he eats a non-gluten food

that is an allergy [rather than an intolerance], the enzymes will NOT

help him and he gets hives. This lasts about 3-4 days. If he eats a

gluten food, he gets DH, a celiac rash. It lasts about 3-4 weeks,

depending on how much gluten it was.

For kids including mine, where these food issues are intolerances, the

enzymes I use from this url work nicely. But they do not work for my

kids' celiac and true allergy issues.

http://www.houstonni.com/

I would guess, that depending on what the rash looked like and how

long it lasted [was it hives or DH], your daughter may have that

reaction to the gluten in the cake, or because of an allergy reaction

to one of the food items contained within the cake.

If I eat chocolate, I am anaphylactic, something else for you to

consider. Your daughter does not sound anaphylactic, but chocolate is

a very strong allergen.

>

> Where do I get the enzymes & how much do I give her? She is

> petite-60 lbs.

Sorry I have to laugh!! My 5yo son is 52 pounds of solid muscle. I

cannot even visualize an 11yo girl who weighs just 60 pounds.

I think it would depend on which enzymes you choose, how much you

would give her. You should contact the source where you decide to

purchase your enzymes.

She is still behavioral though better. She still has

> ADHD and stims. I prefer going to the local stores if possible.

My oldest son is ADD. He was also helped tremendously by the

reduction/removal of the highly phenolic foods as I indicated in my

previous link. Therefore, I would venture that your daughter does

have phenol issues. For some kids, the enzymes I use work nicely for

phenol issues, but for other kids including mine, they don't.

I am not aware of any enzyme products sold in local stores that are

formulated for phenol issues, but there are a few that other people

here can give you information on them.

>

> Thanks

>

> Joan

[Guest guest]

Yes, it can take that long to diagnose. There sometimes is a fine line between

apraxia and severe phonological disorders. The patterns can be very similar.

Typically, a child with apraxia does not progress as quickly as a child with a

severe phonological disorder. It may take the therapist several sessions to

rule out consistent patterns of sound errors (phonological) vs. constant groping

and inconsistent errors due to poor motor planning.

I am the mother of a wonderful 2 year old who has just very recently

been diagnosed with apraxia. He has been in speech therapy since

April but they have just now decided that apraxia is the root of the

problem. Does it normally take that long to diagnose the problem?

They have been teaching him some sign language in therapy which seems

to have helped with his frustration over communicating; from your

experience, will sign language discourage him from even trying to

communicate verbally?

!

[Guest guest]

Hi , I am so happy that you have found this group. It has been a big

help and comfort to all of us.

It is hard to diagnose apraxia much before the child is two years old. The

main thing is that you got ST for him early and the therapist is teaching him

sign language. It will help him to communicate until he can replace the

signs for words. Once he is able to use his words he will drop the signs.

Congratulations on recognizing that your precious son needed help for speech

and that he is getting help at an early age.

Welcome to the group and I hope you will write often because we all benefit

from each others experiences.

Best wishes, Patty, Grammy to and a bunch and from Ohio

[Guest guest]

Hi and welcome to our group!

Believe me, we all know how you feel! I think you got diagnosed rather

early. My son was over 3 when they told me it was apraxia, among other

things. Your child is only 2 - this is good! Start him/her in speech

therapy right away, with a therapist who is familiar with apraxia.

And no, teaching the children sign will not discourage them from eventually

speaking on their own. I was under the same assumption myself. My son

, 5, is learning to communicate using a picture book. He must point to

what he wants and then try to say the word.

Good luck to you and keep us posted!

~~

> I am the mother of a wonderful 2 year old who has just very recently

> been diagnosed with apraxia. He has been in speech therapy since

> April but they have just now decided that apraxia is the root of the

> problem. Does it normally take that long to diagnose the problem?

> They have been teaching him some sign language in therapy which seems

> to have helped with his frustration over communicating; from your

> experience, will sign language discourage him from even trying to

> communicate verbally?

>

[Guest guest]

We used sign language for our son and on the contary it helped him to speak.

All of the words that he had signs for 8 months ago he now has the words for.

He doesn't use any signs now but i am so glad we used them as it takes a lot

of their frustration away.Welcome to the group! kate