New to Group

[Guest guest]

Hi Cary,

Thanks for the support. My dept. is not what I would call *user friendly* we

have to be able to work full duty-there are no compromises for light duty.

BUT one of my bosses has Ankylosing spondylitis..I expect he'll be a bit more

understanding.

I am not on any pain meds right now as I am tapering the prednisone, I have

not been pain free for a while now...I do feel lucky that my body parts seem to

take turns! (when my feet are really bad, my shoulders and elbow feel

relatively better)

From what I am hearing and reading this is normal.

I didn't realize that the pain and inflammation would be so migratory!

[Guest guest]

In a message dated 08/01/2004 12:22:45 Central Standard Time,

Thotful560@... writes:

> I have

> not been pain free for a while now...I do feel lucky that my body parts seem

> to

> take turns! (

-

Pain wise, my rheumy was not willing to prescribe anything. Jeez, I can't

tell you why. But when I actually cried at an appt with my primary, and believe

me, I'm not a cryer!, my primary prescribed ultracet with a year of refills.

I don't take it all the time, and it is non-narcotic so it has it's limits,

but it sure helps when I am having a painful day and working.

Cary

[Guest guest]

Welcome to the group, !

Sorry that you've not been feeling well and that you have such a

physically demanding job.

I hope your diagnosis and treatment can be better defined soon.

I wouldn't recommend staying on prednisone indefinitely since the

long-term effects are so serious, so it's good that you are attempting

to taper. I'm hoping your rheumatologist will add something else so that

the tapering can be done more quickly and easily.

[ ] new to group

> Hi All,

> My name is I am 43 and I am new to the group.

> I have been recently dx (tentatively) with seronegative RA, and

> started on prednisone. My illness began last June with persistent

> fever, weakness, nightsweats and a flu-like syndrome that would not

> go away. How I continued to work was beyond me! I still have the 100+

> fever for several weeks out of every month.

> I saw my GP, then an Inf. disease specialist and now since December a

> Rheumatologist. I have done more tests , Labs and scans than I knew

> existed!!

> I had an abnormal bone scan that was *misread* according the the

> Rheum..Back in July the bone scan showed uptake in all my joints,in a

> symmetrical pattern...but since I had no pain (yet) the Radiologist

> read it as a degenerative process. The Rheum believes that it was, in

> fact, an inflammatory process...and NOW I have pain in nearly all my

> joints...shoulders, knees, feet, wrists and elbows. In December I had

> no AM stiffness..but now I do!

>

> I am interested in hearing from other seronegative folks...I am going

> to taper the dose of prednisone by 2.5 mg every week.

> What should I expect as I taper??

> I am going back to work in 2 weeks...I dread that, as I have a

> physically demanding job and was not in pain prior to December.

> Now I am unsure as to whether or not I can carry out my job duties.

> I am a cook, and I must be able to lift and carry 40-50 lb cases of

> produce, etc. YIKES!!

> Thanks,

>

[Guest guest]

1) We don't homeschool because our school district would not provide

the speech, OT, and resource help for homeschooled kids. There is a

thing through the school district called independent studies. It is

sort of like homeschooling but run through the school district.

From what I've heard from other parents, the school district

provides the curriculum and the child reports to a teacher once a

week to turn in and get assignments. At the end of the year, the

teacher administers the standardized testing. Since independent

studies is through the school district, I think the kids would still

qualify for special ed services like speech and OT. You might want

to check it out.

2) My daughter with apraxia potty trained at 2. She is an identical

twin, and her sister learned first. Then she had to copy her

sister. Some kids take longer because they have hypotonia and other

issues relating to potty training.

3) You might want to tell your mother that your son has a problem,

and you are trying to deal with it as best you can. You might want

to ask for her help. Or you might want to suggest ways that she can

help. You might say something like " Reading to a child with speech

problems is very beneficial, so could you read to Dakota. It would

really help him and me. " You also may want to point out ways that

Dakota is special. For example, two of my kids are gifted, and my

daughter with speech problems is not. However, my daughter with

speech problems works much harder than her brother and sister. I

always point out how hard she works. is also very brave and

tries just about anything from roller coasters to different foods.

My son is a very picky eater, and is terrified of roller coasters.

I don't try to bring my son down, but I do try to bring up by

pointing out what a good eater she is and how brave she is to go on

big roller coasters.

4) only used sign language for a short time. Some of it was

American Sign Language that her speech therapist taught her, and

some of it was made up sign that we used at home to communicate.

Seh mainly used it while she was learning to say some words like

more. I couldn't understand what she was saying, but I understood

the sign. She dropped the sign as soon as people started

understanding her. We also used it to express emotions. I showed

her to pound her fist into her other hand when she was mad. I

showed her to point to her mouth when she was happy. She wrapped

her arms around herself when she was scared. It was very hard for

her to express emotions because she couldn't point to those.

5) loves babies. However, her identical twin sister who is

gifted and speaks quite well is fixated on puppies. They have

broadened a bit this year. now also is into princesses. Of

course, now every baby is named Princess. also loves the baby

care bear, Hugs. now has broadened into bears. For a while,

every puppy that got was named after her brother, .

Only one of the puppies has stayed with that name. I think she even

got confused.

Good luck! By the way, my girls are 7 years old and in first grade.

> Hi, my name is Mattie. I'm the mother of 3 boys, Ian 12, Avery 7,

> and Dakota 4. Dakota is a late talker. We finally have him in

speech

> therapy. This past Tuesday our speech therapist said that Dakota

> most likely has apraxia and that we should go home and do all the

> research we can about this disorder to help him. Boy was I

shocked.

> Everything that I read on the internet about apraxia points to

> Dakota. I know that I have a lot more reading to do and a whole

lot

> more to learn but I do have a few questions for parents who have

> dealt with this longer than I have.

>

> 1. Do any parents with children who have apraxia homeschool? I

> homeschool Ian and Avery. My boys are very socialable.

>

> 2. How late do some of these children learn to be potty trained?

> Dakota is finally starting to learn. Very frustrating.

>

> 3. How can I get my mother to stop comparing Dakota to

> his " normally " speaking 15 month old cousin?

>

> 4. How has sign language helped those who have used it with their

> children?

>

> 5. Has anyone's child have a fixation on one item? Dakota has a

> recent habit of naming all his new teddy doggies after the

> neighbor's dog who name is Wyatt (which Dakota says perfect almost

> everytime, which makes the owner of the dog and his mommy very

> happy). The owner of Whyatt is very helpful in trying to get

Dakota

> to speak.

>

> Sorry this message is long. I'm just trying to learn all I can in

> helping my son learn to talk.

>

> Thank you for all your help in advance.

>

> Mattie

[Guest guest]

Hello Mattie

Welcome, I don't have but a minute today but I wanted to tell you to order

the book The Late Talker. It is cowritten by

[Guest guest]

Dear Dakota's mum.. I used baby signs with my son from a very young age (from a

book called Baby signs) He was less than 1 yr and used to help him communicate

generally. He is now 4yrs and has been diagnosed with speech apraxia and

developmental dyspraxia. He uses those signs now and other cues to help us

understand words and sentences he is telling us. I am thankful for that because

it lessens his frustration. In my eyes anything that helps gets the message

across is useful as it is only then that you can repeat the correct words to

model them to the child. [ ] New to group

Hi, my name is Mattie. I'm the mother of 3 boys, Ian 12, Avery 7,

and Dakota 4. Dakota is a late talker. We finally have him in speech

therapy. This past Tuesday our speech therapist said that Dakota

most likely has apraxia and that we should go home and do all the

research we can about this disorder to help him. Boy was I shocked.

Everything that I read on the internet about apraxia points to

Dakota. I know that I have a lot more reading to do and a whole lot

more to learn but I do have a few questions for parents who have

dealt with this longer than I have.

1. Do any parents with children who have apraxia homeschool? I

homeschool Ian and Avery. My boys are very socialable.

2. How late do some of these children learn to be potty trained?

Dakota is finally starting to learn. Very frustrating.

3. How can I get my mother to stop comparing Dakota to

his " normally " speaking 15 month old cousin?

4. How has sign language helped those who have used it with their

children?

5. Has anyone's child have a fixation on one item? Dakota has a

recent habit of naming all his new teddy doggies after the

neighbor's dog who name is Wyatt (which Dakota says perfect almost

everytime, which makes the owner of the dog and his mommy very

happy). The owner of Whyatt is very helpful in trying to get Dakota

to speak.

Sorry this message is long. I'm just trying to learn all I can in

helping my son learn to talk.

Thank you for all your help in advance.

Mattie

[Guest guest]

Hi Mattie,

Here are my answers to your question:

" 1. Do any parents with children who have apraxia homeschool? I

homeschool Ian and Avery. My boys are very socialable. "

If you check the archives there are parents that homeschool their

children for a variety of reasons in this group -and there are state

and federal laws about therapy services when you do this which were

posted. I don't have time to search the archives for them now -but

will try to soon. (I have family visiting me to defrost from NJ) I

did find one post below from J'Aimme who has a 4 year old like you

she is homeschooling -so perhaps the two of you can talk? (and all

the others that homeschool please comment too!)

" 2. How late do some of these children learn to be potty trained?

Dakota is finally starting to learn. Very frustrating. "

Lots on this in the archives -most children with apraxia also have

hypotonia (low tone) and due to that and/or the motor planning they

are " late bloomers " in some ways...potty training appears to be one

of them. Some potty train early -but most potty train sometime

around early 4. Best advice I got on this that I'll pass on... " he

has a lot on his plate to work on already -give him some time "

" 3. How can I get my mother to stop comparing Dakota to

his " normally " speaking 15 month old cousin? "

Well I really hope this isn't going on in front of Dakota! If it

is -next time it happens ignore her - turn to Dakota and simply

say " He is learning to talk and he is doing great...aren't you

Dakota " focus on Dakota and walk away. Then in private -please

remind her that he understands what is said... and loan her ASAP a

copy of The Late Talker book to answer her questions. Many family

members will ask questions like " Is he talking yet " out of love and

concern. (after awhile you cringe you hear it so much!) I found it

best to use quotes back from the professional evaluations to help

family and friends understand the diagnosis -and what was being done

to help. Once all those that love Dakota understand what he (and

you) go through -they can be part of the team to help bring him a

voice.

If on the other hand anyone says anything rude -try answer number

10 -works like a charm.

http://www.speech-express.com/latetalkerreview.html

" 4. How has sign language helped those who have used it with their

children? "

Almost all of us use sign language to a certain extent. And even if

we don't teach it to them -they develop it themselves and we learn

and understand what they are trying to say. I used to call Tanner

Harpo Marx. I highly recommend simple sign language so that Dakota

has a way to let you know key words like " eat " " drink " " potty " etc.

if he isn't able to say key words like this. For my son Tanner we

never learned extensive sign -but some apraxic children do. Sign is

great as well for rude people. Normally it doesn't happen with

children under 3 -but sometime after you start getting the " what's

wrong with him question " you can use simple sign language

creatively to shut up rude people by using it with your son in front

of them. Once people believe a child is deaf -they stop asking rude

questions.

" 5. Has anyone's child have a fixation on one item? Dakota has a

recent habit of naming all his new teddy doggies after the

neighbor's dog who name is Wyatt (which Dakota says perfect almost

everytime, which makes the owner of the dog and his mommy very

happy). The owner of Whyatt is very helpful in trying to get Dakota

to speak. "

Well sounds like you have awesome and wonderful neighbors! I call

it the " Bambi " theory. Once a child learns a word -they call

everything that. (remember how Flower the skunk got his name?) And

it's not like he is calling cars and trees Wyatt or anything. Once

my boys learned more words they became more creative. Any look at

it this way -some adults carry on a whole conversation with the one

word " Yo " .

Here is one recent archive that may help:

From: rogers1611@...

Date: Fri Dec 12, 2003 11:06 am

Subject: Re: [Luke & home education

,

I am homeschooling my son, (4), who was diagnosed a

year ago with oral/verbal apraxia. He is doing very well. We moved

last spring across the country, so he had an interruption in therapy,

but since he was really having a speech surge anyway, it worked out

fine.

He is receiving private therapy at a local hospital's physical

medicine

dept.

He was going once a week but we recently upped it to twice a week

since

we still had benefits left. My insurance company pays for 30

sessions and

I have been told that I can appeal for more if it is medically

indicated,

but am

not counting on that. I have United Health Care.

I have home educated my older kids for 12 years and I want

to

have

the same benefits that they have had being home. It does get tricky

though when

you have to work on the speech also. So far, I am trying to exhaust

my

resources

without accessing what is available at the public school.

I have found a wealth of information on this list, the CHERAB site,

the

apraxia-kids site,

The Late Talker book, and other sources online. I sit in the sessions

with my son and then

go home and reinforce what they are doing. We take home sheets from

therapy and work

on the words (some weeks are better than others.) I went to the party

store/Wal Mart and bought

a lot of the things that and others have mentioned here or I

have

seen done in therapy

(horns, bubbles, Marshmallow fluff.) I print off clip art of target

words

or sounds and put them in

his speech binder so we can go over them whenever we get a minute.

It is difficult because you really have so much to do already with

regular school and the other

children and this is added on.

For the positives about home educating a speech impaired child:

It seems to me that it is easier to maintain a positive self image

in the

younger years

if my son is not worried about 'being different' or is misunderstood.

My son does have quite a few words now (a year ago he was learning

to say

" Mama " ) and we understand most of what he says.

I feel like I have more time to work on his speech since he is home

all

day with me.

We have many opportunities to target certain sounds or words.

I have many siblings at home for him to practice his social skills

and

speech!

We also attend homeschool field trips and church regularly so I feel

he

gets

adequate opportunity to socialize, as do all my kids. The older kids

(now

teens)

are pretty well received wherever they go.

I think he does have above average intelligence and I am leery of

having

him labeled

at such a young age. I have high expectations for him and I think he

will

do well.

He is doing well!

I know homeschooling is not for everyone and I admire you ladies who

do

battle for your

children everyday in the public system. I may have to do that some

day if

stops making

progress and I can find no other resources. I would only want walk-in

speech though. The rest I

want to continue to do at home. But so far my preference has been to

just

stay out of the system

all together.

is only 4 so I have a long way to go. I do know (through e-

mail)

a few other people who are

home educating apraxic kids, some that are older than Nicky.

I have a friend that successfully used the Linguisystems Easy Does It

books for a son that had

articulation problems (not apraxia, though.) I have often thought

about

purchasing some of those

type of books (that have been used with him in therapy) if I ever

had to

go without therapy for a

time.

I also would look for a good private SLP that would be willing to

monitor

the progress that you

are making at home and send home work for you to do. Maybe you could

do

monthly or biweekly

sessions. There are a host of outside civic groups that sometimes

give

scholarships for speech therapy.

Since your son has OT issues also, you may want to talk to the Elks.

In

FL, they also help with speech if

your child has OT problems. All the contact are on the CHERAB

website, I

believe. I started to look into

these but found out I had more recourse with my insurance company,

so I

left it there.

I am also supplementing with ProEFA and that seems to have helped a

lot

also. Our SLP has begun telling

her other patients' parents about it and she loves the Late Talker

Book!

does not have a whole host of therapy issues ... basically

oral

motor weakness and the

apraxia.

Hope this helps in some way, . I know there are a few of us home

educating moms

here on the list. May the Lord give you wisdom to find the best

resources

for your son!

And thanks again and again to all you on the list who share your

valuable

info and your lives

on this list! It really has been quite encouraging.

J'Aimee in FL

mom to many

=====

[Guest guest]

I homeschool my daughter who is 12 and gifted. I was contemplating

homeschooling my son. He is in the school system already and I know sometimes

it can be difficult to get them out once they have an IEP. I do not want to

send him to school- but I don't want him to loose his services either. I don't

know for sure if he will though. He hasn't started K yet but I have until the

fall to decide. I get a lot of slack from my inlaws about homeschooling already

and I am sure that they will have a lot to say if I homeschool him with his

special needs that he has. But I feel over the summer when I was just working

with him he came alot faster then he did all year with his 2 sessions a week

that he gets. So I don't know. If you want to homeschool him do it that is

what I say, look to the Lord for guidance. Ask your son if he wants to go to

regular school or stay home and school like his siblings do.

If you want to talk seperatley about it feel free to email me off of the group.

Good luck to you,

Vicki - austin 5 oral / verbal apraxia sensory issues.

> Hi, my name is Mattie. I'm the mother of 3 boys, Ian 12, Avery 7,

> and Dakota 4. Dakota is a late talker. We finally have him in speech

> therapy. This past Tuesday our speech therapist said that Dakota

> most likely has apraxia and that we should go home and do all the

> research we can about this disorder to help him. Boy was I shocked.

> Everything that I read on the internet about apraxia points to

> Dakota. I know that I have a lot more reading to do and a whole lot

> more to learn but I do have a few questions for parents who have

> dealt with this longer than I have.

>

> 1. Do any parents with children who have apraxia homeschool? I

> homeschool Ian and Avery. My boys are very socialable.

[Guest guest]

,

I have an awesome SLP in Yardley, Bucks County. email me off list and I'll give

you her info.

, mom to CJ

<sorteep@...> wrote:

Hi I am new to this list.. was hoping for a good Speech LAnguage

Therapist reference in teh Philadelphia area to help formally

diagnose my autistic 3 yr old with apraxia as well so that we may

receive appropriate care thru the intermediate unit of Delaware

county.. thanks all for any help.. we work with Pipan at CHOP

for Dev Ped and many others for complimentary/alternative care as

well as OT/PT/Speech/SI in home thru county thanks

[Guest guest]

Hi Dionne,....Welcome to the group, sorry the reason why you are

here, but we are all here for each other. I feel angry, it is hard

not to, because it's like our lives our robbed of our life.

I hope that you take the time, and get to know us, I am here for you,

Tawny

> Hi i have only just recently been diagnosed with RA I'm 36 with 3

> children with special needs. I still feel quite overwhelmed and

angry

> that i have this. i have not had a lot of support from anyone but

my

> husband has anyone any info on how i can find some support in the

> South East UK. Thanks and kind regards Dionne

[Guest guest]

If you need a shoulder, I understand. I too have RA and 3 of our 4 children

have special needs. I feel like I spend all of my energy battling the schools

sometimes.

Becky

[ ] New to Group

Hi i have only just recently been diagnosed with RA I'm 36 with 3

children with special needs. I still feel quite overwhelmed and angry

that i have this. i have not had a lot of support from anyone but my

husband has anyone any info on how i can find some support in the

South East UK. Thanks and kind regards Dionne

[Guest guest]

Welcome, Dionne! I'm very sorry about your recent RA diagnosis.

Have you tried contacting Arthritis Care or checked out their Web site?

Arthritis Care home page:

http://www.arthritiscare.org.uk/home/index.cfm?region=uk

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] New to Group

> Hi i have only just recently been diagnosed with RA I'm 36 with 3

> children with special needs. I still feel quite overwhelmed and angry

> that i have this. i have not had a lot of support from anyone but my

> husband has anyone any info on how i can find some support in the

> South East UK. Thanks and kind regards Dionne

[Guest guest]

Welcome to the group. I am in the Dallas/Fort Worth area. What part of

Central Texas do you live in? There are two other families that I know of in my

area whose children see Dr. G.

Gaylen

[Guest guest]

Hi. I'm in Round Rock texas. I have a son PDD/NOS (hyperlexic) who will be

4 in April. Feel free to look us up if we're close by.

Sincerely,

April Jagnow

new to group

> I am really excited to find this group. I have been on the

> autism group, but just found and joined this group. A little about

> me: my son D is 8 yrs. old. His diag. is PDD/NOS, but at 2 mos.

> old he had strokes which we feel is the basis for most of his

> problems. We met Dr. Goldberg in March of 2001 and went to visit in

> Aug. 2001. We have seen a lot of progress since then and are very

> pleased with Dr. G. We have met some opposition from " outsiders " ,

> but that is life. They just don't understand having a child that is

> not " normal " . We live in Central TX and would love to know if there

> is anyone that is close by.

>

>

>

>

>

> Responsibility for the content of this message lies strictly with

> the original author(s), and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

>

[Guest guest]

Hi ,

How often and how many Peptizydes are/were you giving? My son was on the diet

for a year, then we took him off the diet with the use of HNI enzymes. I

started with one capsule with every meal and snack. Then we added Zyme Prime. We

saw some behavior that we weren't happy about for a short while right after

starting the enzymes. Now he gets one Pep & one Zyme Prime with each meal unless

there is alot of gluten in the meal then I up the Peptizyde to 2. We also add

No-Phenol when he eats pizza.

HTH,

Rhonda in CA

[Guest guest]

In a message dated 5/5/2004 4:41:51 PM Eastern Standard Time,

jashoov@... writes:

I was wondering if I should try another brand or give it more time.

,

My son was on the GFCF diet for over three years. We saw tremendously

wonderful results with the diet.

About 1 1/2-2 years back I tried Kirkman enzymes with horrible results. He

did not respond well to them and he was on them for 8 weeks. We barely

challenged the diet ( he ate french fries one night and had a few M & Ms a

different day)

after weeks on the enzymes with the result of a 6 week regression. In

addition, he had behaviors I had never seen before and such intense hyperness

with

the Kirkman's.

Needless to say, I was very reluctant to try the Houston products. Long story

short, he had appearance of some behaviors we hadn't seen in years when he

first was on the enzymes, before we challenged the diet. I was scared. I stayed

the course and we didn't have the same ever increasing hyperness we did on the

Kirkman's.

He has now been off the diet exactly six months today (we challenged it big

time at my daughter's birthday dinner 11/5/03). He is doing well. He is going

to be eight this month and while he, of course, still has some autistic

behaviors (he stims big time and has some areas of rigidity--it still is very

difficult to run into people we know when we are out and about), he really is

doing

well. He is playing with his sister fabulously, his language skills continue to

improve, his reading is doing well (now onto comprehension--a totally

different animal) he has really picked up on his math this year (he is in first

grade) and while he cannot do the math facts quickly he understands everything

they

did in math. In addition to HFA/AS, he has visual and auditory processing

issues so I think he is doing great. I am very proud of him.

So...to directly answer your question, I would stay with Houston for two

months. I know the intense fear of seeing behaviors return. My son now eats

anything he wants (well, MSG stuff still gives an immediate reaction and I have

always tried to avoid it anyway--he gets it at birthday parties, like in BBQ

chips). I also give a lot more enzymes to him than most on this list do. I think

it

is helping heal his gut.

Good luck.

HTH,

Robin

[Guest guest]

You mention biggest areas of need...handwriting. Can you tell me

more about the handwriting? Maybe there is a vision related problem

(which can carryover into other areas).

Becky

> Hi. My son is almost 8 and has Aspergers and has been on the GFCF

diet for almost 1 year. There are times that things are going so

great and I think I owe it to the diet, then things can turn and I

don't know what he may have eaten that he is reacting to and I just

go crazy trying to help him. His biggest areas of need are

behavioral, anger, irritabilty and handwriting. I have been

homeschooling him for 1 1/2 years now since school wasn't in his best

interest so I know every morsel of food he puts in his mouth. I

tried the Peptizyde enzymes and noticed more irritabitlity with his

little brother and some defiance coming back. Also, he has exzema

occuring on his arms and legs so i stopped the enzymes and went back

to the diet. He just begs at times to eat the foods he used to crave

like mac- n- cheese, cheese and more cheese. I was wondering if I

should try another brand or give it more time. Any suggestions, I'm

just so afraid to see these negative behaviors again. oh, he

> also craves spinning toys and was compulsively twirling his hair

the week we added foods back in. Any help would be appreciated..

Thanks

>

> , Chase's mom

>

>

>

[Guest guest]

,

My daughter had a tough time (more irritable, defiant, hitting

herself) when she first started Houston enzymes (I used all

three) so I gave her a break and restarted slowly, first with Zyme

Prime, then AFP and after a month or so with No- Fenol. We are

seeing great things now but it took awhile.

I echo the person who said two month trial and I would add don't

be afraid to up dosage (after settling into a comfort zone). Also,

we have not challenged the diet very much--my daughter has a

lot of food intolerances and this has not gone away after 3

months on enzymes.

(BTW, her major issues have been sensory integration issues,

mood, fear, sound sensitivity, obsessive behaviors, and food

intolerance. We've seen improvements in all areas except food

intolerances.)

[Guest guest]

How long did you trial the AFP?

new to group

> Hi. My son is almost 8 and has Aspergers and has been on the GFCF diet for

almost 1 year.

[Guest guest]

Re: new to group

Hi ,

How often and how many Peptizydes are/were you giving? My son was on the diet

for a year, then we took him off the diet with the use of HNI enzymes. I

started with one capsule with every meal and snack. Then we added Zyme Prime.

We

saw some behavior that we weren't happy about for a short while right after

starting the enzymes. Now he gets one Pep & one Zyme Prime with each meal

unless

there is alot of gluten in the meal then I up the Peptizyde to 2. We also add

No-Phenol when he eats pizza.

HTH,

Rhonda in CA

[Guest guest]

Sometimes old behaviors return as part of the healing process for a short while

because you are healing old problems. I watched this with my son and the old

problem just showed itself for a short while and went again and I was left with

a happier child. Also saw his ear turn bright red again which we havent had for

years, which was a bad sign as it was prior to a bad spell but it came and went.

All very interesting. I am sure if the problems persist it is a worry but just

thought I would mention this. I am a Natural Health Practitioner and often see

clients regress for a while when on treatment but then that disappears and

usually an excellent healing occurs.

Re: new to group

In a message dated 5/5/2004 4:41:51 PM Eastern Standard Time,

jashoov@... writes:

I was wondering if I should try another brand or give it more time.

,

My son was on the GFCF diet for over three years. We saw tremendously

wonderful results with the diet.

About 1 1/2-2 years back I tried Kirkman enzymes with horrible results. He

did not respond well to them and he was on them for 8 weeks. We barely

challenged the diet ( he ate french fries one night and had a few M & Ms a

different day)

after weeks on the enzymes with the result of a 6 week regression. In

addition, he had behaviors I had never seen before and such intense hyperness

with

the Kirkman's.

Needless to say, I was very reluctant to try the Houston products. Long story

short, he had appearance of some behaviors we hadn't seen in years when he

first was on the enzymes, before we challenged the diet. I was scared. I

stayed

the course and we didn't have the same ever increasing hyperness we did on the

Kirkman's.

He has now been off the diet exactly six months today (we challenged it big

time at my daughter's birthday dinner 11/5/03). He is doing well. He is going

to be eight this month and while he, of course, still has some autistic

behaviors (he stims big time and has some areas of rigidity--it still is very

difficult to run into people we know when we are out and about), he really is

doing

well. He is playing with his sister fabulously, his language skills continue

to

improve, his reading is doing well (now onto comprehension--a totally

different animal) he has really picked up on his math this year (he is in

first

grade) and while he cannot do the math facts quickly he understands everything

they

did in math. In addition to HFA/AS, he has visual and auditory processing

issues so I think he is doing great. I am very proud of him.

So...to directly answer your question, I would stay with Houston for two

months. I know the intense fear of seeing behaviors return. My son now eats

anything he wants (well, MSG stuff still gives an immediate reaction and I

have

always tried to avoid it anyway--he gets it at birthday parties, like in BBQ

chips). I also give a lot more enzymes to him than most on this list do. I

think it

is helping heal his gut.

Good luck.

HTH,

Robin

[Guest guest]

>>I tried the Peptizyde enzymes and noticed more irritabitlity with

his little brother and some defiance coming back. Also, he has exzema

occuring on his arms and legs so i stopped the enzymes and went back

to the diet. He just begs at times to eat the foods he used to crave

like mac- n- cheese, cheese and more cheese.

You might want to consider the AFP Peptizyde. Those symptoms might be

from intolerance to the papain/bromelain in the Peptizyde, rather than

leaving gfcf.

>>also craves spinning toys and was compulsively twirling his hair the

week we added foods back in.

Most of the time, this is yeast for my son. But it might have been

something else for your child.

Good luck.

Dana

[Guest guest]

Our 7 year-old couldn't tolerate gluten or casein at all even with the

enzymes until very recently. We started gfcf diet when he was 3. Enzymes

when he was 5. The enzymes caused great improvement in his autism, but he

still broke out into rashes or had behavioral issues if he ate gluten or

casein at all until very recently. He does better with casein than gluten

now. An occasional cup of ice cream (maybe once a month) or pizza (once

every two weeks seems to be too much - we're backing off to once per month)

seems to be ok, but for the most part, he's still gfcf even with enzymes...

, mom to and

new to group

> Hi. My son is almost 8 and has Aspergers and has been on the GFCF diet for

almost 1 year. There are times that things are going so great and I think I

owe it to the diet, then things can turn and I don't know what he may have

eaten that he is reacting to and I just go crazy trying to help him. His

biggest areas of need are behavioral, anger, irritabilty and handwriting. I

have been homeschooling him for 1 1/2 years now since school wasn't in his

best interest so I know every morsel of food he puts in his mouth. I tried

the Peptizyde enzymes and noticed more irritabitlity with his little brother

and some defiance coming back. Also, he has exzema occuring on his arms and

legs so i stopped the enzymes and went back to the diet. He just begs at

times to eat the foods he used to crave like mac- n- cheese, cheese and more

cheese. I was wondering if I should try another brand or give it more time.

Any suggestions, I'm just so afraid to see these negative behaviors again.

oh, he

> also craves spinning toys and was compulsively twirling his hair the week

we added foods back in. Any help would be appreciated.. Thanks

>

> , Chase's mom

>

>

>

[Guest guest]

Hello,

I have a five year old daughter with Apraxia and Dystharsia. She is

considered severely impaired. But has made tremendous progress since Christmas

when I

started her on Pro EFA. I don't know if this is the place to ask about

Carnosine (Carn-aware) but I've been thinking about starting her on it and was

wondering what other's experiences have been? (I'm sure this has been asked

before,

but, like I said, I am new to this group) If anyone can help me out or steer me

in the right direction, I would appreciate it.

Thanks, Diane (Haley, 5, apraxia/dystharsia, low tone, fine and gross motor

delays, and a real sweetheart, , 20 months, typical boy and running me

ragged)

[Guest guest]

Welcome Dixie! I am 47 and have RA, four children (15-21), three dogs, 1 cat,

chickens, 3 rabbits, and a few other creatures running around! Glad you found

us.

Becky

[ ] New to group

Hi!

I just joined the group. After reading what was at the home site, it

sounded just like what I've been looking for.

My diagnoses are: RA, OA, IA, DDD, AS, and fibro. I'll also warn you

that I'm bipolar, and when any of my mania is present, I can get silly, goofy,

loquacious, and just a tad crazy-funny. Humor is one of the ways I use to cope

with my illnesses, so I hope it has a place in this group.

Dixie is my nickname, and I tend to go by Dix, which is what my sisters

call me, as well as a few close friends. I'm married to Dan for nearly 34

years, have 7 grown children, 3 grandchildren, and one doggie, a 6 month old

male Maltipoo named Bobo.

My hobbies are gardening, cooking, reading, and playing with my computer.

That's about it.

I'd love to hear from you letting me know a little about you. I look

forward to meeting you, and getting to know you better and becoming friends.

Dix