new to this list

November 1, 2000

Hello,

I'm new to this list and I'm trying to get as much information as possible

about PA and what works/doesn't work for others. I was recently diagnosed

and have other health issues as well.

I was wondering what MTX is, as well as lasik surgery. I would also like to

know what other's experience with Celebrex is, because I'm getting some

weird symptoms that I can't decide are normal or not, like burning chest

pain, cough and sore throat... also some pretty severe stomach pains.

Should I be worried?

I have also had Fibromyalgia for the last 8 years, and I'm wondering if

anyone on this list has it too. I seem to be finding a lot of information

about PA that is similar to FM. Also, are there any diabetics out there who

find that the PA and/or if the meds cause any highs and lows in blood sugar.

I'd be grateful for any input you can give me.

moderator 2 cents: , Celebrex gave me severe sore throat and severe sinus

problems. Couldn't lay down because I thought I couldn't breathe. An hour after

taking it I had severe doubling over cramps in the intestines (Celebrex is easy

on the stomach, no one mentioned the intestines). When I stopped taking it the

symptoms went away. The side effects are not common but some people get them.

What really bothered me was doubling over in pain when I was already taking

strong pain meds. I can't imagine what it would have been like if I wasn't on

the pain meds. PatB

November 1, 2000

In a message dated 11/1/00 2:04:28 PM Eastern Standard Time,

heather.watson@... writes:

<< I was wondering what MTX is,

** Hi : MTX is Methotrexate - a low-level chemo drug. I started out

with a gradually increasing dosage of it each week - it is taken usually once

a week - am up to 20mg a week right now...it is supposed to prevent the joint

damage PA can cause - that's a brief description - I'm sure others can add to

it** as well as lasik surgery. **Lasik surgery is vision correction surgery

& has nothing to do with the PA...just came up as a " should I or shouldn't I "

disucssion**

I would also like to know what other's experience with Celebrex is, because

I'm getting some

weird symptoms that I can't decide are normal or not, like burning chest

pain, cough and sore throat... also some pretty severe stomach pains.

Should I be worried?

**Celebrex never helped me a bit but others may have more info on it**

I have also been diagnosed with Fibro, but the PA is most concerning to me

at the moment. I am a diabetic also - on oral med. The Prednisone that I

take (15mg/day) does raise the blood sugars so I have to watch it**

Hope this confusing message helps you!

, Monroe, MI

I have also had Fibromyalgia for the last 8 years, and I'm wondering if

anyone on this list has it too. I seem to be finding a lot of information

about PA that is similar to FM. Also, are there any diabetics out there who

find that the PA and/or if the meds cause any highs and lows in blood sugar.

>>

November 1, 2000

Yes be worried about the symptoms. I had gastritis and they put me on

Celebrex because at that time they thought it did not cause gastritis.

After I was on it for a few months I was getting horrible stomach pains and

burning in my chest. They redid my scope and found that the gastritis had

worsened. Now they say that Celebrex will not cause gastritis, but if you

have gastrtis it will worsen it considerably. Most people do not know if

they have it or not. I am an RN and i have seen people in our ED with

perforated ulcers from the Celebrex. Definitely consult your physician

about these side effects...I am by no means an expert on the stomach...just

relating my own personal experience.

Rae

RE: [ ] New to this list

> Hello,

>

> I'm new to this list and I'm trying to get as much information as possible

> about PA and what works/doesn't work for others. I was recently diagnosed

> and have other health issues as well.

>

> I was wondering what MTX is, as well as lasik surgery. I would also like

to

> know what other's experience with Celebrex is, because I'm getting some

> weird symptoms that I can't decide are normal or not, like burning chest

> pain, cough and sore throat... also some pretty severe stomach pains.

> Should I be worried?

>

> I have also had Fibromyalgia for the last 8 years, and I'm wondering if

> anyone on this list has it too. I seem to be finding a lot of information

> about PA that is similar to FM. Also, are there any diabetics out there

who

> find that the PA and/or if the meds cause any highs and lows in blood

sugar.

>

> I'd be grateful for any input you can give me.

>

> moderator 2 cents: , Celebrex gave me severe sore throat and severe

sinus problems. Couldn't lay down because I thought I couldn't breathe. An

hour after taking it I had severe doubling over cramps in the intestines

(Celebrex is easy on the stomach, no one mentioned the intestines). When I

stopped taking it the symptoms went away. The side effects are not common

but some people get them. What really bothered me was doubling over in pain

when I was already taking strong pain meds. I can't imagine what it would

have been like if I wasn't on the pain meds. PatB

>

> Please visit our new web page at:

> http://www.wpunj.edu/icip/pa

>

> This past year had moderated a chat on arthritis at

www.about.com on Thursday evenings and hopes to start up doing so again

soon- we will keep you posted! Meanwhile, if anyone would like to start a

weekly chat on egroups, please contact or . Thanks

>

November 4, 2000

Re: Diabetes & P & PA medication. I don't have diabetes but the prednisone

that I take for PA raises my blood sugar and also the Cormax that I had used

for the P on my head raised it substantially. The Prednisone which I still

use raises it about 20 to 30 points after a meal but since I have relatively

low blood sugar to start with it isn't a problem. However the Cormax raised

it about 60 to 80 points and when I told my dermatologist he said he had

never heard of such a thing. Anyhow I stopped using it. Hope this info

helps. PS I check my blood sugar about 2X a day just to make sure I don't

wind up with another problem (diabetes). I also take extra calcium with the

prednisone because that medication takes calcium out of your bones.

November 10, 2000

I knew that mtx was originally a cancer drug but is it really chemo?

I thought it was just an immune system supressor.

Moderator note: In more concentrated, shorter term doses, MTX is used as

chemotherapy, in combination with other drugs. Welcome to the list - Patty,

moderator from OH PHDRWD@...

> In a message dated 11/1/00 2:04:28 PM Eastern Standard Time,

> heather.watson@h... writes:

>

> << I was wondering what MTX is,

> ** Hi : MTX is Methotrexate - a low-level chemo drug. I

started out

> with a gradually increasing dosage of it each week - it is taken

usually once

> a week - am up to 20mg a week right now...it is supposed to prevent

the joint

> damage PA can cause - that's a brief description - I'm sure others

can add to

> it** as well as lasik surgery. **Lasik surgery is vision

correction surgery

> & has nothing to do with the PA...just came up as a " should I or

shouldn't I "

> disucssion**

>

> I would also like to know what other's experience with Celebrex

is, because

> I'm getting some

> weird symptoms that I can't decide are normal or not, like burning

chest

> pain, cough and sore throat... also some pretty severe stomach

pains.

> Should I be worried?

> **Celebrex never helped me a bit but others may have more info on

it**

> I have also been diagnosed with Fibro, but the PA is most

concerning to me

> at the moment. I am a diabetic also - on oral med. The Prednisone

that I

> take (15mg/day) does raise the blood sugars so I have to watch it**

>

> Hope this confusing message helps you!

> , Monroe, MI

> I have also had Fibromyalgia for the last 8 years, and I'm

wondering if

> anyone on this list has it too. I seem to be finding a lot of

information

> about PA that is similar to FM. Also, are there any diabetics out

there who

> find that the PA and/or if the meds cause any highs and lows in

blood sugar.

> >>

November 11, 2000

My RD gave me the history on MTX - it was originally used to treat

breast cancer in the 60's...as chemo drugs became more refined &

developed, it is now used as a regimine of maybe 6 or 7 other drugs.

He said that it IS a chemo drug but the dosages we are getting are

miniscule compared to a cancer patient. That's the info I got on it.

> > In a message dated 11/1/00 2:04:28 PM Eastern Standard Time,

> > heather.watson@h... writes:

> >

> > << I was wondering what MTX is,

> > ** Hi : MTX is Methotrexate - a low-level chemo drug. I

> started out

> > with a gradually increasing dosage of it each week - it is taken

> usually once

> > a week - am up to 20mg a week right now...it is supposed to

prevent

> the joint

> > damage PA can cause - that's a brief description - I'm sure

others

> can add to

> > it** as well as lasik surgery. **Lasik surgery is vision

> correction surgery

> > & has nothing to do with the PA...just came up as a " should I or

> shouldn't I "

> > disucssion**

> >

> > I would also like to know what other's experience with Celebrex

> is, because

> > I'm getting some

> > weird symptoms that I can't decide are normal or not, like

burning

> chest

> > pain, cough and sore throat... also some pretty severe stomach

> pains.

> > Should I be worried?

> > **Celebrex never helped me a bit but others may have more info

on

> it**

> > I have also been diagnosed with Fibro, but the PA is most

> concerning to me

> > at the moment. I am a diabetic also - on oral med. The

Prednisone

> that I

> > take (15mg/day) does raise the blood sugars so I have to watch

it**

> >

> > Hope this confusing message helps you!

> > , Monroe, MI

> > I have also had Fibromyalgia for the last 8 years, and I'm

> wondering if

> > anyone on this list has it too. I seem to be finding a lot of

> information

> > about PA that is similar to FM. Also, are there any diabetics

out

> there who

> > find that the PA and/or if the meds cause any highs and lows in

> blood sugar.

> > >>

November 14, 2002

--Marita,

My husband uses Pep and zyme for his irritable bowel and they have

helped him a lot. The no-fenol along with the pep and zyme have really

helped my 4 year old son. He eats a regular diet now and the addition

of the no-fenol have taken away his previously harsh OCD.

Patti

- In @y..., " Marita Munzer " <marita@m...> wrote:

> Hi,

> I'm Marita, mum to Nick, 9 years with AS and Tourette's, and wife to

who also has AS.

> Nick has been taking some enzymes (animal product) which do seem to

work, he is also strictly GFCF as well as avoiding artificial colours

and flavours, artificial sweetners, citrus, citric acid and cocoa. We

limit corn and some fruits.

> I am keen to try Nick on No Fenol and Peptizyde and my husband is

interested in trying them too. Are there any adults on this list who

have tried enzymes and found them beneficial?

> limits dairy foods but is not GFCF.

> I would love to hear experiences of using No Fenol too.

> A while ago I read an excellent article about enzymes that came on

the FEAT mailing list, it was about a trial study and mentioned that

all those who took part show positive benefits, and the most benefits

came after 12 weeks of use. Unfortunately I lost this article when my

hard drive went kaput. Does anyone have a copy of that article as I

would like to show my husband?

>

> We live in South Australia.

>

> regards, Marita

>

November 14, 2002

Hi Marita

Nice to hear from someone else with an AS husband. Mine (, 36) has been

taking Houston enzymes Zyme Prime and Peptizide for about 3 weeks and seems to

have been more social, interactive and generally together as a result. I've put

in an order for No-Fenol and think that may have a positive effect as well. I

can't be absolutely certain that it's not just an up phase in his mood cycle,

but I think he looks better, more healthy colour, less dark circles under his

eyes and is certainly more iinterested in relating to friends and family. It

probably hasn't been long enough to be sure, but it's been good enough to make

us want to keep going. He also takes 2 Dothiepin (anti depressants - could be

called something else in Aus) in the evening. Has been diagnosed over the years

as bi-polar, depressive, anorexic (has limited, mostly vegan diet so very thin),

but I'm beginning to think is actually none of those things in the normal sense,

it's just all a part of the AS. He is also, though, dyslexic and was probably

ADHD as a child; now a brilliant IT troubleshooter but finds it hard to hold

down a job for long as he is otherwise disorganised and has odd sleeping

patterns (which No Fenol is supposed to help). He wants to start his own

business and I'm hoping the enzymes will help make this possible.

I'd be interested in hearing about you and your husband. I used to live in

Sydney between 1976 and 1984. Where are you in SA. We are in London.

All the best

Lucy

new to this list

Hi,

I'm Marita, mum to Nick, 9 years with AS and Tourette's, and wife to who

also has AS.

Nick has been taking some enzymes (animal product) which do seem to work, he

is also strictly GFCF as well as avoiding artificial colours and flavours,

artificial sweetners, citrus, citric acid and cocoa. We limit corn and some

fruits.

I am keen to try Nick on No Fenol and Peptizyde and my husband is interested

in trying them too. Are there any adults on this list who have tried enzymes and

found them beneficial?

limits dairy foods but is not GFCF.

I would love to hear experiences of using No Fenol too.

A while ago I read an excellent article about enzymes that came on the FEAT

mailing list, it was about a trial study and mentioned that all those who took

part show positive benefits, and the most benefits came after 12 weeks of use.

Unfortunately I lost this article when my hard drive went kaput. Does anyone

have a copy of that article as I would like to show my husband?

We live in South Australia.

regards, Marita

November 14, 2002

Hi Marita,

I kept meaning to tell you about this list. I hope that it helps. Please e-mail

me off the list as I need to talk to you about a friend who wants to start home

schooling. I'll see you on thursday if I don't talk to you beforehand.

Bye for now,

Belinda

In South Australia

November 15, 2002

Hi Patti,

thanks for your response. How was your husband helped?

has particular problems with mood swings, anxiety and poor sleeping and

auditory sensitivity. He is antisocial - but this doesn't bother him :-)

The other day he thinks he had something that caused a reaction but he can't

pinpoint what it was, he said that he had a great deal of difficulty focusing

and concentrating, so much so, that when he reversed his van out of the

driveway, he reversed it into our car, denting it. He said that he couldn't stop

watching the mirror - it looked odd to him.

Marita

Re: new to this list

--Marita,

My husband uses Pep and zyme for his irritable bowel and they have

helped him a lot. The no-fenol along with the pep and zyme have really

helped my 4 year old son. He eats a regular diet now and the addition

of the no-fenol have taken away his previously harsh OCD.

Patti

- In @y..., " Marita Munzer " <marita@m...> wrote:

> Hi,

> I'm Marita, mum to Nick, 9 years with AS and Tourette's, and wife to

who also has AS.

> Nick has been taking some enzymes (animal product) which do seem to

work, he is also strictly GFCF as well as avoiding artificial colours

and flavours, artificial sweetners, citrus, citric acid and cocoa. We

limit corn and some fruits.

> I am keen to try Nick on No Fenol and Peptizyde and my husband is

interested in trying them too. Are there any adults on this list who

have tried enzymes and found them beneficial?

> limits dairy foods but is not GFCF.

> I would love to hear experiences of using No Fenol too.

> A while ago I read an excellent article about enzymes that came on

the FEAT mailing list, it was about a trial study and mentioned that

all those who took part show positive benefits, and the most benefits

came after 12 weeks of use. Unfortunately I lost this article when my

hard drive went kaput. Does anyone have a copy of that article as I

would like to show my husband?

>

> We live in South Australia.

>

> regards, Marita

>

July 27, 2004

Welcome Jen- this is a great group and a VERY valuable resource for

information about all aspects of apraxia. I have a 2 1/2 year old daughter who

has

apraxia, SI issues, and difficulties with hearing/ receptive language. I have

found so much support here in this group.

Welcome aboard!

-Beth

July 27, 2004

Hello, my name is Jen and I have a son who is 5 yrs old. He has Autism and

SEVERE Apraxia. I have been told 2 times in the past week (by 2 different

SLP's) that he has the most severe apraxia they had seen - both of them have

been SLP's for over 25 years.

To tell you a little about us......

I am married to my husband for 15 years (this coming Oct.) and we have two

children a typically developing daughter who is 11 and a beautiful happy big boy

of 5.

I am not sure what is worse.....the apraxia or the autism. Although my son

breaks the classic autism role.....he is somewhat social - he still has the

classic symptoms of autism. I am on our local autism board and very active with

kids of special needs. I also work for my local Early Intervention program.

He was diagnosed 2 times in 2002 and again this past May with autism. He takes

medication for his behaviors. He still doesn't give great eye contact but, it

looks good to others. He attended his preschool (from the school system) for 2

school years and now is going into Kindergarten.

Also, this past July 2003 is when he was diagnosed with Apraxia. I just realized

he is more severe than I thought. Especially since talking with the SLP's that

were honest. We have never stopped our speech therapy and I guess I didn't

notice he just makes teeny tiny steps instead of leaps.

Anyway, thanks for letting me join your group. I hope you can offer me hope of

him someday actually talking and not approximating everything.

Sincerely,

Jen T. in Tennessee

July 27, 2004

Welcome Jen!

I know that you will find some good support and info on this list. I am not

sure where you are in TN but wanted to make sure that you knew there is a

support group in Nashville:

Apraxia Support Group

Nashville, Tennessee

Meets: First Monday of the Month at 7 p.m. at Christ Church Nashville, Room

210

Contact: Carla Leake

E-Mail: mamacjtn@...

Online Discussion Group: nashvilleapraxia

Tricia Morin

North Carolina

Jen wrote:

Hello, my name is Jen and I have a son who is 5 yrs old. He has Autism

and SEVERE Apraxia. I have been told 2 times in the past week (by 2

different SLP's) that he has the most severe apraxia they had seen - both of

them have been SLP's for over 25 years.

To tell you a little about us......

I am married to my husband for 15 years (this coming Oct.) and we have two

children a typically developing daughter who is 11 and a beautiful happy big

boy of 5.

I am not sure what is worse.....the apraxia or the autism. Although my

son breaks the classic autism role.....he is somewhat social - he still has

the classic symptoms of autism. I am on our local autism board and very

active with kids of special needs. I also work for my local Early

Intervention program. He was diagnosed 2 times in 2002 and again this past

May with autism. He takes medication for his behaviors. He still doesn't

give great eye contact but, it looks good to others. He attended his

preschool (from the school system) for 2 school years and now is going into

Kindergarten.

Also, this past July 2003 is when he was diagnosed with Apraxia. I just

realized he is more severe than I thought. Especially since talking with

the SLP's that were honest. We have never stopped our speech therapy and I

guess I didn't notice he just makes teeny tiny steps instead of leaps.

Anyway, thanks for letting me join your group. I hope you can offer me

hope of him someday actually talking and not approximating everything.

Sincerely,

Jen T. in Tennessee

July 27, 2004

cool,

I just was requesting. I should have just looked...hehehe

Jen

RE: [ ] new to this list