Advice Needed

[Guest guest]

Connor's eye isn't actually swelling, it's just being pushed shut by the band. The second I take it off, his eye is wide open. I tried pushing the skin upward in the middle of his forehead before velcrowing the band shut and it still pushes his eye shut. Unfortunately I think I will have to wait until Tues. Thanks everyone for your advice!

Nikkikdaekept <kim.daeke@...> wrote:

My son had trouble w/ his eye swelling for a few days in his DOC Band. But it was only after sleeping and it went away when he was up and around. Our OT at Cranial Tech said this was actually a pretty normal thing, as long as it was going away. If your son's swelling is going away when he is up, I would probably leave on the band. But if it is there all the time and seems to be getting even worse while he is up, I would take off the band. Good luck!!Kim--Gus' momDOC Band 8/21/03> I wrote yesterday about my son Connor's first day wearing his > Starband and having his right eye pushed almost shut. Today, it > seemed even worse to where he couldn't open it. I called and cannot > get in to see

the orthotist until next Tues. One orthotist is > leaving the company tomorrow and a new one starts on Tues. In the > meantime, do I discontinue use of the helmet until then? By Sat. we > will be up to the 23 hours and I hate to do more damage then good, > but I also hate to get delayed on everything. Because the orthotist > is leaving tomorrow he is not able to talk to me on the phone or give > any advice. Very frustrating! What would you do?> > Thanks so much in advance!> NikkiFor more plagio info

[Guest guest]

Nikki,

I agree, I'd keep his band off of him too. I think it's outrageous

that no one else can see you.

> > I wrote yesterday about my son Connor's first day wearing his

> > Starband and having his right eye pushed almost shut. Today, it

> > seemed even worse to where he couldn't open it. I called and

> cannot

> > get in to see the orthotist until next Tues. One orthotist is

> > leaving the company tomorrow and a new one starts on Tues. In

the

> > meantime, do I discontinue use of the helmet until then? By Sat.

> we

> > will be up to the 23 hours and I hate to do more damage then

good,

> > but I also hate to get delayed on everything. Because the

orthotist

> > is leaving tomorrow he is not able to talk to me on the phone or

> give

> > any advice. Very frustrating! What would you do?

> >

> > Thanks so much in advance!

> > Nikki

[Guest guest]

Nikki, if the ortho that is leaving can't treat anymore because he is

leaving, why is he still there? That is stupid, sorry. Is there not

anyone else that could do an adjustment for you?

Dustie

--- In Plagiocephaly , " dnajtc99 " <dnajtc99@y...>

wrote:

> I wrote yesterday about my son Connor's first day wearing his

> Starband and having his right eye pushed almost shut. Today, it

> seemed even worse to where he couldn't open it. I called and

cannot

> get in to see the orthotist until next Tues. One orthotist is

> leaving the company tomorrow and a new one starts on Tues. In the

> meantime, do I discontinue use of the helmet until then? By Sat.

we

> will be up to the 23 hours and I hate to do more damage then good,

> but I also hate to get delayed on everything. Because the orthotist

> is leaving tomorrow he is not able to talk to me on the phone or

give

> any advice. Very frustrating! What would you do?

>

> Thanks so much in advance!

> Nikki

[Guest guest]

When i went in to see the classroom ass

OK..I'm sorry but its only 8:30 here and I haven't had my coffee so I fell

off my chair reading this as in my oldest son's case it truly IS a classroom

ass as opposed to a classroom assistant... on to your question though: we

also had the suggestion to ease off work at certain points and only do the

most necessary..it was for my youngest child with a chronic health problem

and not apraxia but it worked really well for easing the stress...as only

the necessary work was covered (and none of the busy work)there were no

instructional gaps..good luck

Annemarie

No matter the storm, when you're with God there's always a rainbow at the

end

[Guest guest]

I think probably all of us struggle with how much to work our

children. One of the key ways that I've known if is being

over-worked is if she is happy or not. If she starts having more

tantrums at home, then I pretty much know something is going on.

I've also set boundaries. We don't do a lot of after-school

activities because it is too much for my kids. I also pick area

that I think the girls need help in. The girls are in Brownie

Scouts because I don't think they are very social. is still

very quiet at school, but she is now getting more comfortable with

her Brownie friends. I'm hoping over the years, her scout friends

will help her.

We are looking into starting piano lessons because is very

interested. We can either go to a neighbors for lessons or have

someone come to our house. Piano is also great for helping motor

planning problems, and has lots of motor planning problems.

I also give my kids breaks. During Christmas, we do lots of fun

activities. We cook a lot, make ornaments, sing songs, etc. It's

normal kid stuff, but they learn with these activities and it's fun.

I also will not send to summer school. I think she needs a

break from the pressure of school and academics. We do speech and

OT during the summer but that's it. Otherwise, we sleep late, and

go swimming a lot. We also go to lots of amusement parks,

picnicing, bike riding, museums, etc. I know believes in ride

therapy, and I agree.

It's like tailor the kid activities to things that benefit your

child. We have to always remember that they are children, and they

learn by having fun.

I hope this makes sense. Good luck.

SuzI

[Guest guest]

HI , Beautiful website! Have you tried the mike lock with the ear

piece. It that doesn't work a piece of wig tape might do the job. Cheers,

Ruth

Advice needed

Hi everyone,

My 17 month old daughter Jasmine was activated today. I was a bit

disappointed there wasn't more of a reaction from her, even though

we were told that this could happen. I realize this is only the

first day and that her processor is turned on low to start out with.

If there are any parents or CI recipients out there who experienced

the same thing, I would love to hear from you.

Also, her ear piece keeps falling off, because her ear is so small.

Any advice/suggestions would be appreciated.

Happy mom to Jasmine Mei-Chun

Activated today!

Nucleus 24.

http://geocities.com/sandrapeffly

[Guest guest]

<<Dr. recommendations:

ora mune max to boost immune system>>

I'm not familiar with this product but did want to warn you about things that

" boost the immune sytem " and autistic kids. There seems to be at least three

subsets of immune dysfunction in spectrum kids, only one of which does well

on things that " boost " the immune system. These would be kids whose systems

are very depressed. The other two groups either way over-react to all things or

over-react to some things and under-react to others. Giving them an " immune

booster " could make things worse by revving up a system that is already in

overdrive.

Also, I recommend that you add all new supplements/meds in very slowly -- at

least a few days to a few weeks apart -- to make sure your child doesn't react

to them and you don't overwhelm her body. Many spectrum kids are sensative

to a lot of things and if you add a bunch of stuff all at once, they regress

and you have no idea what caused it.

<<He wants to look at chelation since all of dd's shots had thermerisol

and I had an amalgam filling removed then a root canal in my first

trimester.>>

This sounds like a good idea.

<<We started gfcfef 2 weeks ago and have gone 100% gfcfef this week.

....We are going to try it for 6 - 12 weeks. If there is no improvement we may

stop.>>

Unfortunately, it can take as long as 6 months to tell the full effects of

gluten and caesin removal. Most see it fairly quickly but some do not. You

may not see a clear improvement at first but usually if it is a major problem, a

retrial of gluten/caesin will produce worse symptoms than when the child was

eating it regularly. I know the diet is really hard but it can be well worth

it for many kids.

Gaylen

[Guest guest]

Ann

I've noticed that a lot of children that are reactive to eggs have problems with

phenols. You can't always test for all food intolerances. Fiengold is a great

program in combination with the gfcf diet.

Marilyn Edge

caycemom <rjone745@...> wrote:

I had my phone consult with my dd's DAN! dr. last week and here is

what happened.

No yeast or parasites (yeah!)

low zinc/high copper

low glutathione

low citric acid and B6

IgG shows reactivity to bananas, gluetin, casein, eggs

high caseomorphine and gluteomorphine

slightly elevated liver enzymes

only excreating alum. and magnesium in hair...no mercury

no lactobifidus in gut

Dr. recommendations:

start gfcfef - did so 2 weeks ago, this week went 100%

mulit-flora spectrum daily

ora mune max to boost immune system

liver support suppliment

l-glutathione lotion (2x/day)

spectrum complete daily

20 - 40 mg. zinc daily

DPP-IV enzymes with meals

flax oil suppliment

We also do epsom salt baths nightly and use melatonin at night.

He wants to look at chelation since all of dd's shots had thermerisol

and I had an amalgam filling removed then a root canal in my first

trimester.

We started gfcfef 2 weeks ago and have gone 100% gfcfef this week.

Sunday we were out of town and let dd eat at a brunch buffet. She

got to eat whatever she wanted. I gave her a couple of DPP-IV

enzymes before the meal. She had wheat and eggs and there was

probably some milk in the stuff she ate. I must say she was pretty

wild later that afternoon and aggressive with her brother. I can't

say for sure that the diet is helping even though she had one rough

afternoon! I am eager to see improvement over the next few weeks. I

know that some people on this list like gfcf and some think it's not

the best route to take. We are going to try it for 6 - 12 weeks. If

there is no improvement we may stop.

I have not been giving dd a DPP-IV enzyme at meals. We did Houston

enzymes for about 3 months. We saw some improvement but not enough.

DD got tired of taking them.

So, for those of you who are experienced in treatments, does this

sound like a good plan? I was excited to learn that yeast and

bacteria would not be an issue but was disappointed to learn of the

egg reaction. GFCF baking would be easier if I could use eggs.

Thanks for the feedback. Ann

=======================================================

[Guest guest]

Hello,

I hope this reaches the correct party. I just wanted to let you know how much

the wheat free diet changed my sons life. I saw a difference right away. I went

with it because my husband had a wheat allergy and I thought it might help. It

did in a big way, I will tell you we never went dairy free and it still made a

difference. If you go the www.gfcfdiet.com web site there is alot of information

on where you can purchase wheat free cereals and foods. The local health food

stores will be able to help, they really agree with the wheat free diets. Good

Luck

Bonnie , Luke's mom

momtocd@... wrote:

<<Dr. recommendations:

ora mune max to boost immune system>>

I'm not familiar with this product but did want to warn you about things that

" boost the immune sytem " and autistic kids. There seems to be at least three

subsets of immune dysfunction in spectrum kids, only one of which does well

on things that " boost " the immune system. These would be kids whose systems

are very depressed. The other two groups either way over-react to all things or

over-react to some things and under-react to others. Giving them an " immune

booster " could make things worse by revving up a system that is already in

overdrive.

Also, I recommend that you add all new supplements/meds in very slowly -- at

least a few days to a few weeks apart -- to make sure your child doesn't react

to them and you don't overwhelm her body. Many spectrum kids are sensative

to a lot of things and if you add a bunch of stuff all at once, they regress

and you have no idea what caused it.

<<He wants to look at chelation since all of dd's shots had thermerisol

and I had an amalgam filling removed then a root canal in my first

trimester.>>

This sounds like a good idea.

<<We started gfcfef 2 weeks ago and have gone 100% gfcfef this week.

.....We are going to try it for 6 - 12 weeks. If there is no improvement we may

stop.>>

Unfortunately, it can take as long as 6 months to tell the full effects of

gluten and caesin removal. Most see it fairly quickly but some do not. You

may not see a clear improvement at first but usually if it is a major problem, a

retrial of gluten/caesin will produce worse symptoms than when the child was

eating it regularly. I know the diet is really hard but it can be well worth

it for many kids.

Gaylen

[Guest guest]

There seems to be so much information on the immune connection in autism

spectrum kids, but a lot of it seems confusing and contradictory. I would

be curious to know where you got your information about the three subsets of

immune dysfunction in ASD. Did you read it in a particular book on immune

dysfunction in ASD kids(if such a book exists-I would be curious if such a

book exists)or did you get it through going to various biomedical

conferences or just from things you read on the internet?

My feeling about what you said about the three subsets of immune dysfunction

in ASD is that it sounds interesting and possibly true-I think one can never

be careful enough when it comes to the immune system because apparently the

way the immune system works is not a simple thing.

Debbie

Re: [ ] Advice needed

<<Dr. recommendations:

ora mune max to boost immune system>>

I'm not familiar with this product but did want to warn you about things

that

" boost the immune sytem " and autistic kids. There seems to be at least

three

subsets of immune dysfunction in spectrum kids, only one of which does well

on things that " boost " the immune system. These would be kids whose systems

are very depressed. The other two groups either way over-react to all

things or

over-react to some things and under-react to others. Giving them an " immune

booster " could make things worse by revving up a system that is already in

overdrive.

Also, I recommend that you add all new supplements/meds in very slowly -- at

least a few days to a few weeks apart -- to make sure your child doesn't

react

to them and you don't overwhelm her body. Many spectrum kids are sensative

to a lot of things and if you add a bunch of stuff all at once, they regress

and you have no idea what caused it.

<<He wants to look at chelation since all of dd's shots had thermerisol

and I had an amalgam filling removed then a root canal in my first

trimester.>>

This sounds like a good idea.

<<We started gfcfef 2 weeks ago and have gone 100% gfcfef this week.

.....We are going to try it for 6 - 12 weeks. If there is no improvement we

may

stop.>>

Unfortunately, it can take as long as 6 months to tell the full effects of

gluten and caesin removal. Most see it fairly quickly but some do not.

You

may not see a clear improvement at first but usually if it is a major

problem, a

retrial of gluten/caesin will produce worse symptoms than when the child was

eating it regularly. I know the diet is really hard but it can be well

worth

it for many kids.

Gaylen

[Guest guest]

In a message dated 6/18/2004 12:46:15 PM Central Standard Time,

websie@... writes:

I would be curious to know where you got your information about the three

subsets of immune dysfunction in ASD. Did you read it in a particular book on

immune

dysfunction in ASD kids(if such a book exists-I would be curious if such a

book exists)or did you get it through going to various biomedical

conferences or just from things you read on the internet?

Just to clarify -- I said " seems to be at least three subsets " because, to my

knowledge, there haven't been any clear studies to indicate this. The " three

subsets " theory is somewhat of an echo of the theory espoused by Dr.

Goldberg and discussed by a few others at various conferences and on the

list. It does seem to explain my years of observation and work

with various kids and the dramatically different reaction different " subgroups "

seem to have to various supplements and treatments.

Dr. Goldberg's work is mainly in viruses and overall immune balancing. While

some of this beliefs would not be well recieved by many, I think his

observations among his patients does offer some interesting insights as to why

some

kids do well on some things while others may regress on the same supplement or

treatment. He orders a series of immune system testing prior to working with a

patient and follows these tests throughout the treatment process. For some

kids, he said he sees a completely over-reactive system that is in overdrive.

These tend to have the higher viral titers as well as many allergies. He says

that using an " immune booster " for these kids would be like adding fuel to an

already raging fire.

He says that other kids systems do not react to much or are very " delayed "

reactors. These kids tend to never seem to get sick, don't seem to react to

very many foods and do not show elevated viral titers even when there is a viral

problem in their body. For these, he finds that a few months into antiviral

treatment shows a " kicking in " of the immune system and rising viral titers.

If I understand him correctly, these are the kids he'd do " immune booster "

treatments with like IM-IGG treatments and such.

Still another group he's found, which my son fits into, is the dysregulated

system that hyper-reacts to various non-pathogens (foods and perhaps some

autoimmune stuff) and under-reacts to many true pathogens. These kids also tend

to

show a rise in viral titers after a few months of treatment, even though

their initial titers don't always show an elevation.

Gaylen

[Guest guest]

Hi Missy,

Our AF chapter is actualy forming a commitee to find things to get the AF

involved in.

My advise would be to contact your local chapter and tell them your plans and

hopes.They are nothing without vollunteers.We have a YMCA and 2 public pools

and all 3 have PACE classes as well as aquatic classes for people with

arthritis or any joint problems.It realy shouldn't be a problem getting these

programs at your YMCA.Usualy duiring the day and evening is when they have the

differant sort of classes,then at night is when they have open swim.It would be

set

up for differant times and days and you would need an instructor that is

familiar with low impact water exercises.

Good luck!!!

Becki and 6systemic

[Guest guest]

The arthritis foundation is already associated with the YMCA's. We live in a

small town in Missouri, Carthage, and our YMCA DOES have a heated pool that is

seperate and is in association with the Arthritis Foundation.

So my thoughts would be that the Y already has everything in place that you need

if your town wants it there. You just have to have it included in the plans

My daughter is 7 and the heated arthritis pool at our Y has been great for her.

Infact the closest city to us doesn't have one at their Y.

Good luck and keep us posted.

Alesha mother of 7

MG9393@... wrote:

Hi all,

I need some advice - We live in an area of realativly small cities that make up

a metrocom. Anyway that metrocom chamber is soliciting for a YMCA to be built in

our area. Which is a wonderful idea , especially for the people in our area that

suffer from arthritis. The nearest heated pool for therapy is 40-50 minutes away

at a private OT outpatient clinic. I would somehow like to get the Arthritis

Foundation in on this and try to work out a joint thing, where the YMCA could

somehow set up something for Arthritis patients to use the heated pool, either

at a specific time or something. I am serving on the community developement

committee to bring the YMCA here, but I am not sure about how to go about

uniting them with the Arthritis Foundation. Any suggestions or comments???

Thanks

Missy and Tyler (spondy 10)

[Guest guest]

--- dglowther <dglowther@...> wrote:

> which treatment I

> would like to try, Remicade or Enbrel

When presented with both options, I picked Remicade

because I'm a weenie and I don't like needles. One

infusion every 8 weeks seems easier to me than

self-injecting Enbrel once or twice a week.

Also, on my healthplan, the Remicade is more

cost-effective. (It's considered a " procedure " so it's

covered by my office visit co-pay, whereas the Enbrel

is considered a Rx and is subject to the more

expensive pharmacy co-pay for every refill.)

The two drugs are formulated differently. One may work

for you, where the other doesn't. You won't know until

you try.

Good luck!

--

=====

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

Stein

www.noblefusion.com/astein

If you're tired of fighting battles with yourself

If you want to be somebody else

Change your mind...

-- Sister Hazel

__________________________________________________

[Guest guest]

In a message dated 11/1/05 9:25:29 PM GMT Standard Time,

david@... writes:

Now one

thumb has been painful for about 3 weeks.

Hi again ,

I am currently going through a similar problem. Since starting Enbrel on top

of the MTX I have been feeling better generally but my right thumb has been

giving me lots of problems. It feels to me more or less like the same thing

that happened to several of my fingers which resulted in damaged joints but my

Rheumy insists that the problem is not in the joint itself this time but the

tendon. I also attend a clinic held by a professor of Rheumatology in Glasgow

and they agreed. So, at the end of this month I have got to go to Glasgow

for an injection under the tendon.(Don't like the sound of this one! lol)

Have you been to your Rheumy yet? Let us know how you get/got on.

Good luck,

[Guest guest]

Hi ,

The injection doesn't sound like fun..

I have been traveling and had to put off my appt.

I'm rescheduled for the 2nd week of December. I'll post back after my

appt. I have been noticing an ever slowly increase in achey joints,

It seems to be more present a day or two prior to my usual dose day.

I'm in the Northeast US and the onset of colder weather usually gives

me a short time (2-4 weeks) of aches & pains, though this year seems

like more and more persistent.

Stay Well,

[Guest guest]

>

> OK. I have a son who is 4 1/2 with high-functioning Autism. In

> June we started the GFCF diet. By August I had a completely

> different kid for 4 weeks that I thought was nearly normal!! I was

> thrilled, then crash. Week by week he worsened until by the end of

> September he was a little bit better and calmer because of the diet,

> but we had lost what we had thought was nearly a miracle.

This is common if there are other foods which are eaten and not

tolerated, especially soy, corn, and phenols

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

> Then we started Enzymes. I read the book and we started with

> capsules of Houston's Peptizyde with every meal or snack. We were

> pretty consistent, but we missed about one snack every day at

> school. We kept this up for more than 4 weeks and noticed no

> difference.

It may be that he needs both enzymes AND food removals. My son needed

both, altho the foods I had to remove were not gluten/casein.

> As of this week, I stopped giving enzymes and put my son back on the

> GFCF diet. I wonder though, whether we gave the enzymes a fair

> trial or not - whether we were consistent enough with them or

> whether there is another food intolerance not addressed by either.

Try adding back the enzymes and keep gfcf. If you notice problems,

consider removing soy, corn, or other foods, see if you notice

anything. For my son, enzymes did not help with rice, corn,

artificials, or orange and green foods.

Dana

[Guest guest]

The exact same thing happened for us! We started the diet and it

immediately had an effect on our son. However, after about a month,

he started to get worse. Really, more food intolerances were

occurring. We then started enzymes. I would suggest sticking with

the diet and enzymes for a short period of time ( a couple of

months). This will allow the body to rid itself of the gluten and

casein and allow some gut healing to occur.

There are some kids that can go straight to enzymes and forgo the

diet. It didn't happen that way for us. My son still can't

tolerate wheat, milk, or soy even with enzymes. He can have an

occassional infraction, with wheat but absolutely no milk or soy.

No fenol has helped us tremendously with phenol issues.

Are you only giving Peptize? Are you also using zyme prime and no

fenol? For us, it was all 3 enzymes that made a difference. Have

you removed all food dyes and preservatives? Food dye is awful for

my son.

Also, we recently had to stop all the enzymes for a period of time

for a couple of tests and it became apparent to me then how much the

enzymes were helping to keep our yeast and bacteria manageable.

Even given with food, they were helping. Again, if you aren't

giving no-fenol, that enzyme will help with yeast if you do have

that and Peptizide will help with bacteria if that's the problem.

Just some ideas! Hope that helps! Hang in there. Enzymes have

helped my son tremendously!

>

> OK. I have a son who is 4 1/2 with high-functioning Autism. In

> June we started the GFCF diet. By August I had a completely

> different kid for 4 weeks that I thought was nearly normal!! I

was

> thrilled, then crash. Week by week he worsened until by the end

of

> September he was a little bit better and calmer because of the

diet,

> but we had lost what we had thought was nearly a miracle.

>

> I took him off the diet, both to 'test' the diet and also to run

the

> Urine Peptide test. He ate milk, pizza and whatever and for the

> first couple of days I noticed no change. After as little as a

week

> though, his sensory difficulties increased and then tantrums and

> then we knew that we were losing ground. After 3-4 weeks we are

> sure the GFCF diet made a difference, though we still wanted our

> month of August back.

>

> Then we started Enzymes. I read the book and we started with

> capsules of Houston's Peptizyde with every meal or snack. We were

> pretty consistent, but we missed about one snack every day at

> school. We kept this up for more than 4 weeks and noticed no

> difference.

>

> We got his lab results back and his peptide levels were high for

> both casomorphin and gluteomorphin (the latter being VERY high).

>

> As of this week, I stopped giving enzymes and put my son back on

the

> GFCF diet. I wonder though, whether we gave the enzymes a fair

> trial or not - whether we were consistent enough with them or

> whether there is another food intolerance not addressed by

either.

> I suspect our trial with the GFCF diet may have led to the

> development of a corn or soy intolerance. This is our experience

so

> far. We are not really doing any other supplements except super

> nuthera or another mulit-vitamin. I do suspect a yeast problem,

but

> I am trying to patiently try one thing at a time. Will you guys

let

> me know what you think may be happening?

>

[Guest guest]

This same sort of thing happened with us. Our son started off

improving and doing so well, then he just kept regressing. That is

when we discovered that it was corn. The more we were GF/CF the more

corn products we were giving him and the worse he was getting. Once

we removed corn we saw big improvements. We removed soy right away

with the GF/CF because I was told soy was so close to casein.

Like Dana said, I would remove more foods, chances are the more you

removed the gluten and casein, the more you are substituting other

things, and it could be those things. Or potatoes, maybe yeast is

getting worse. We had to be careful with potatoes.

I journeled everything....every food and every behaviour and the time

of day everything happened to help figure out the patterns.

I would continue the enzymes because I believe it helps to heal the

gut, but I would also play around with removing more foods. Then

after a few months of improvements (once you find out which foods

were causing the problems - could also be phenols) then reintroduce

one at a time. But, I think the enzymes take time to heal the gut..

My son is doing awesome today - 3 years later..

Does this help?

Tami

>

> OK. I have a son who is 4 1/2 with high-functioning Autism. In

> June we started the GFCF diet. By August I had a completely

> different kid for 4 weeks that I thought was nearly normal!! I was

> thrilled, then crash. Week by week he worsened until by the end of

> September he was a little bit better and calmer because of the

diet,

> but we had lost what we had thought was nearly a miracle.

>

> I took him off the diet, both to 'test' the diet and also to run

the

> Urine Peptide test. He ate milk, pizza and whatever and for the

> first couple of days I noticed no change. After as little as a

week

> though, his sensory difficulties increased and then tantrums and

> then we knew that we were losing ground. After 3-4 weeks we are

> sure the GFCF diet made a difference, though we still wanted our

> month of August back.

>

> Then we started Enzymes. I read the book and we started with

> capsules of Houston's Peptizyde with every meal or snack. We were

> pretty consistent, but we missed about one snack every day at

> school. We kept this up for more than 4 weeks and noticed no

> difference.

>

> We got his lab results back and his peptide levels were high for

> both casomorphin and gluteomorphin (the latter being VERY high).

>

> As of this week, I stopped giving enzymes and put my son back on

the

> GFCF diet. I wonder though, whether we gave the enzymes a fair

> trial or not - whether we were consistent enough with them or

> whether there is another food intolerance not addressed by either.

> I suspect our trial with the GFCF diet may have led to the

> development of a corn or soy intolerance. This is our experience

so

> far. We are not really doing any other supplements except super

> nuthera or another mulit-vitamin. I do suspect a yeast problem,

but

> I am trying to patiently try one thing at a time. Will you guys

let

> me know what you think may be happening?

>

[Guest guest]

> OK. I have a son who is 4 1/2 with high-functioning Autism. In

My dd, 6 when dx HFA

> Then we started Enzymes. We kept this up for more than 4 weeks and noticed no

> difference. I wonder though, whether we gave the enzymes a fair

> trial or not . We are not really doing any other supplements except super

> nuthera or another mulit-vitamin.

I saw improvements using Pep and Zyme Prime with my dd well beyond the 3 month

period

off GFCF. I used both enzymes consistently for 18 mos. and then began to taper

off. Now I

mainly use only No-Fenol. There has been no regression and she has been off diet

restrictions except for curbing the artificials.

Like you, I was using SNT and it was too much along with enzymes. I know she was

absorbing

more nutrients with enzymes and I dropped the SNT mostly because it was causing

some

reflux after I started enzymes with her.

Best to you in 2006.

Serena

[Guest guest]

Hi June

Sorry to hear about your sister

I have been on a mix of Mtx and Hurmia and have had pneumonia

twice in year each time I cam off the mix, and took about 8 weeks to recover

then back on the mix again and I think in less than 12 weeks I was off sick

again this time with an upper viral infection, problem nothing works for my RA

accept for the Hurima and Mtx.

My Family Dr advice as soon as you start cough, come of the med and come

in a seem me right away before it gets worse, this advice has been work

great so far, it just get a little embarrassing when you call in for appointment

and you say I have a cold, and you can hear the sigh in the receptionist voice

as for you question here a bit of information I find about the disease

I hope your sister get better soon.

If you need info on the disease just go to

www.lung.ca/disease/pulmonary_fibrosis.html

The website belongs to the Lung Association

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

Bring words and photos together (easily) with

PhotoMail - it's free and works with .

[Guest guest]

I have this lung disease. I take Humiria and several other drugs.

I see a lung specialist. I also have to watch my health, see the doctor in

case of cold, flu or sinus, as these can turn to pneumonia very easy, I was in

the hospital for a week with it last summer, and was on home oxygen for three

months after.

Depending on how bad the fibrosis is, I currently don;t take anything for it

other than the humiria. I do get somewhat more breathless than a normal person

but not to bad. Doctor said in the future I might need predisone and oxygen for

it. But the Humiria has has helped with the breathlessness, at least I feel it

does. in WI

June Dixon <juner24@...> wrote:

As some of you know, my younger sister also has RA. Yesterday Audrey was

sent by ambulance to the hospital in Ottawa(she lives in Carleton Place)

because of pneumonia. My BIL just called to say the results of the tests

they have done shows she has Fibrosis. She has been on Enbrel and Mtx and

doing fantastic, even ice skating this winter. We are all very worried and

wondered if anyone knows what the prognosis is for this lung disease?

Hugs

June

[Guest guest]

June,

Does the doctor think the fibrosis is caused by the MTX? How long has

she been on MTX?

a

On Jan 28, 2006, at 12:00 AM, June Dixon wrote:

> As some of you know, my younger sister also has RA. Yesterday

> Audrey was

> sent by ambulance to the hospital in Ottawa(she lives in Carleton

> Place)

> because of pneumonia. My BIL just called to say the results of the

> tests

> they have done shows she has Fibrosis. She has been on Enbrel and

> Mtx and

> doing fantastic, even ice skating this winter. We are all very

> worried and

> wondered if anyone knows what the prognosis is for this lung disease?

>

> Hugs

> June

>

>

>

>

[Guest guest]

Yes a,but of course, not confirmed. She is still in ICU hooked up to many

tubes waiting for results from lung biopsy to see how much damage there is.

She was also on Enbrel for the past 2 years but has been on Mtx for at least 5

years.

Hugs

June

----- Original Message -----

From: a

June,

Does the doctor think the fibrosis is caused by the MTX? How long has

she been on MTX?

a

On Jan 28, 2006, at 12:00 AM, June Dixon wrote:

> As some of you know, my younger sister also has RA. Yesterday

> Audrey was

> sent by ambulance to the hospital in Ottawa(she lives in Carleton

> Place)

> because of pneumonia. My BIL just called to say the results of the

> tests

> they have done shows she has Fibrosis. She has been on Enbrel and

> Mtx and

> doing fantastic, even ice skating this winter. We are all very

> worried and

> wondered if anyone knows what the prognosis is for this lung disease?

>

> Hugs

> June

>

>

>

>

[Guest guest]

My understanding is fibrosis is caused by the RA itself.

a <a54@...> wrote: June,

Does the doctor think the fibrosis is caused by the MTX? How long has

she been on MTX?

a

On Jan 28, 2006, at 12:00 AM, June Dixon wrote:

> As some of you know, my younger sister also has RA. Yesterday

> Audrey was

> sent by ambulance to the hospital in Ottawa(she lives in Carleton

> Place)

> because of pneumonia. My BIL just called to say the results of the

> tests

> they have done shows she has Fibrosis. She has been on Enbrel and

> Mtx and

> doing fantastic, even ice skating this winter. We are all very

> worried and

> wondered if anyone knows what the prognosis is for this lung disease?

>

> Hugs

> June

>

>

>

>