my Elijah

[Guest guest]

Dear Dorcas

We all know how you feel! I definitely have the days when I wonder "

When will this all be over???? " My son has not had INCREDIBLE results with

any one thing,but each bit of intervention has played a part in his slow

journey toward recovery. (he is improving so much!!!) I know that money can

be a huge issue in this whole battle. I am probably not our financial

advisors best customer, but I just TRY things and I don't think about the

money. It is way too overwhelming. I read a ton and try to find out what

the best therapies for the money are. The enzymes have just been an added

plus for us. My son can havefoods without reacting physically or

behaviorally. Other interventions: ABA, GFCF,Brain Child Nutritionals

supplements, chealtion. Those are the main things. Hang in there... I have

three children, 18 months apart ( 4, almost 3 ASD, and 16 months) Life gets

very challenging for us and sometimes and I go crazy. My son was non verbal

and now repeats many words, is much more social, improved eye contact, no

more teeth grinding,toe walking or yelling out. I can't tell you what ONE

thing is the best, but I can tell you that the enzymes have helped and that

they have been worth it. Good luck!

[Guest guest]

Hi Dorcus,

Welcome and I hope you can find something helpful here. Many of us

are so very familiar with trying therapy after therapy. My boys are 7

and 9 (still have some SID but recovered from PDD) now and the 9 year

old was HIGH Maintenance - as my husband put it. It sounds like your

Elijah is also a handful. My sons are doing very well on Peptizyde,

Zyme Prime and two meds. Which meds are you currently giving? My sons

take Zoloft and amitryptiline. We are also quite sensitive to casein

and the Peptizyde is covering that nicely.

We also did the GFCF diet for 2 months before starting the Houston

enzymes in April. They have proved to be less expensive than the

diet, more convenient and very effective. I have been able to end

many supplements because we are getting our nutrition from our food.

I personally felt ridiculous giving them handfuls of stuff to take

throughout the day, and then we were eating less and less foods as

well. Hopefully here is the right place to be to get ideas,

information, and support on this.

Here is one idea. Why not just hang around and learn more for a

little bit before deciding what to do. No use tossing money around

until you have a plan you are comfortable with. If you decide to try

enzymes, you can see if there is another supplement you can trade

off - I mean, one that you could reduce or stop for a little while

and take the money you usually use for that one and try one bottle of

enzymes. This would also keep the number of supp your son takes the

same. I am currently finishing a 4-month summary on Peptizyde and

Zyme Prime use and one of the things that has become very apparent is

that at least 80% of the people see results within 3 weeks. So this

isn't one of those things you need to wait a long time to see results

with. So plan on giving it a 3-4 week evaluation period.

I should have this summary finished by this weekend - it is in review

at the moment. Read that and it may give you the information you

need. In the end, you will need to try it yourself. The enzymes do

not help everyone (unfortunately) but they do help a great many

people who try them in varying degress.

As far as the swimming, this is an excellent activity for those with

sensory issues so I wouldn't discourage you from continuing it. Have

your son shower off well afterwards and if he gets really hyper after

swimming, maybe have him soak in an epsom salt bath for about 20

minutes, or mist him with an epsom salt mixture. I am taken to giving

my kids some Natural Calm to drink because it is a magnesium

supplement but it does not have the sulfur. It also costs some $$. I

am going to ask people to give me canisters of Natural Calm and some

HFS stuff for Christmas presents this year. There is group for

sensory integration you might want to visit. It is very active but

has great ideas and support. sid

Post on anything, even if it is just because you are having a bad day

and need to release tension. Maybe this will start a long string of

great days!

.

[Guest guest]

> I just signed on to this group this morning,

Well hello to you! If you read my messages, you will discover that I

am the strange one LOL

and have been reading

> old messages ever since Sesame Street started, but it is ending

> soon. My older son is four and a half, AS, sensory dysfunction,

> GFCF. A woman my husband met through work gave us a sheet about

> peptizyde and HN-zyme prime. I am hesistant to start, as I wonder

if

> this will really make a difference, but also because I really want

to

> believe everything I am reading on this, and would be so

> dissappointed if I found it won't deliver. And can I afford another

> trial investment?

Do you see an effect from gfcf? If so, these enzymes will probably

have at least some positive effect for you, perhaps quite a bit of

positive effect. If you are not seeing effect from gfcf, then the

enzymes may or may not show effect for you.

And is it fair to give him even MORE meds, as he

> is already on so many.

Do you mean medications or supplements? If you want to give an idea

of these other things, you can get opinions from me and others here

about the different things you are using.

We have also found that everything my son has

> is something present with me as well, and going GFCF was

tremendously

> difficult for me.

Trust me, I can relate. I am AS.

> ... Everything we have done has been a battle.

We

> have struggled to get any therapies for my son, which he still

> doesn't get nearly enough of, and we pay for most of it out of

pocket

> even though I can't work (Elijah can't function well enough in

> daycare, and no preschool, public or private, will take him)

You say your son is 4-1/2. If you are in US, he is entitled to public

preschool at no expense to you. If you need assistance in obtaining

for him the services and education to which he is entitled, please let

me know. Here is my site link, for your info

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

and my

> husband is still in an entry-level position. We have no support

from

> family and only occasional verbal support from friends. My husband

> has even been resistive to everything I have pushed (starting with

> Elijah's first therapy session). Is it really worth it? ... And

what

> is the best place to get good ideas, advice and support?

This message board is good. I like to think I am good too LOL. I

have other sources depending on what are your individual concerns.

My son

> drives me to tears most days, and my six month old isn't getting

near

> the care and attention I think I need to give him. I'm a mess, and

> my preschooler is going to drive me off the deep end for sure. ...

> Also, I read in one msg about chlorine absorption through swimming

> reacting with yeast digestion. Can someone tell me more about that?

Walking and swimming are the only physical activities I can

participate in, without hurting myself. I do have some problems with

chlorine, but I don't know about the answer to your specific question.

But for me, the chlorine issue was not worth stopping the swimming.

> I try to take Elijah swimming frequently bec of the

> proprioceptiveness of it. Thanks.

>

> Dorcas

Dana

[Guest guest]

> Hi Dorcas,

>

> Elijah is also a handful. My sons are doing very well on Peptizyde,

> Zyme Prime and two meds. Which meds are you currently giving?

I've ordered them, going to try them on myself and Elijah (and

possibly my husband if I can talk him in to it). Elijah is on two

meds for airborne allergies (one of them three times a day, the other

once a day), and one for bowel problems (QD), plus two vitamins once

a day. Nothing too serious.

>

> We also did the GFCF diet for 2 months before starting the Houston

> enzymes in April. They have proved to be less expensive than the

> diet, more convenient and very effective.

The concept of being able to do away with special foods, hours of

cooking from scratch, starving at potlucks, never getting takeout --

it just seems to be too good to be true. We've been on the GFCF diet

for years now.

>

> I am currently finishing a 4-month summary on Peptizyde and

> Zyme Prime use and one of the things that has become very apparent

is

> that at least 80% of the people see results within 3 weeks. So this

> isn't one of those things you need to wait a long time to see

results

> with. So plan on giving it a 3-4 week evaluation period.

Hmmm. Is that after working up to two to three pills three times a

day? Or does it include that building up time?

>

> I should have this summary finished by this weekend - it is in

review

> at the moment. Read that and it may give you the information you

> need. In the end, you will need to try it yourself. The enzymes do

> not help everyone (unfortunately) but they do help a great many

> people who try them in varying degress.

The diet made such an ENORMOUS difference in my son, that when I

spoke with the doctor on the phone, he seemed certain that this

should make a difference. Even Elijah notices when he is off diet.

He commented one time that off diet he can't recognize numbers and

letters any more. He's careful to stay on diet because reading is

very important to him.

>

> .

Thanks for the help.

Better go. The baby needs me.

How do you all find time to keep up with these posts?

Dorcas

[Guest guest]

Dorcas-- what meds is your son on? My son was on many meds... intal,

albuterol, lactulose/enulose/miralax, zyrtec, claritin... he is now

off all meds (except albuterol as needed for his asthma). He was off

the meds BEFORE we started Peptizyme (we've done alot with NAET and

naturopathic care, but it just wasn't quite enough...there was

something else he needed)... I noticed improvements with Pep right

away. I had been contemplating a GFCF diet and was glad to discover

Pep so that we don't have to even attempt it. Hallelujah!

I know where you are with your frustration... believe me... I am

chasing every lead under the son (my son has sensory integration

dysfunction, but not autism--he's 4). We have spent several thousand

dollars in this year alone. I can honestly say that he had regressed

because of a wrong listening therapy cd he was on that took him back

about 4 months... starting him on Pep and within a few days he was

back to where he was in terms of eye contact, language, mellow

behavior. All for 22 dollars a bottle, which will last about a

month. Is it worth it? You bet... we have chased more expensive

treatments down with less results.

Have you also checked into a yeast problem? We just started ethan on

nystatin (he can swallow tablets), and we are seeing some results

there, too.

W

And is it fair to give him even MORE meds, as he

> is already on so many.

You know, depending on the meds he's been on, they can contribute to

his current status... my son had two rounds of antibiotics which I

believe contributed to his gut problems. Also, vaccines.

[Guest guest]

> Yikes! I hadn't even thought about the pill swallowing issue! I

> assume he needs to be able to swallow pills for to be on this Pep!

> Well, I guess we'll try that. I know my oldest sister, at 33 years

> old, is still unable to swallow pills, and I was almost a teenager

> before I could. Is there a way to take the Pep without swallowing

it as a pill?

The Mixing Suggestions has a lot of ideas. Using a straw may be

another way to deal with. meant to add that to the file but I

don't know if it is in there yet.

If this helps any, a preview from the Summary Report is that almost

everyone that wanted to use Peptizyde and Zyme Prime with

gluten/casein food (instead of the diet) was able to do so. A few

people found that they are actually dealing with celiac and the

enzymes do not appear to work for celiac at this time. You may find

you want to do the GFCF anyway or for part of the time. I use Pep and

Zyme with each meal and it works great. We have eliminated almost all

the chemical additives and it was really not that hard.

.

[Guest guest]

> YES! There is such a difference with the diet. On gluten, Elijah

> does not sleep, is incredibly lethargic, shows great deficiencies in

> visual, auditory and tactile integration, and loses control of his

> behavior continually. On casein, he has great digestive problems

and

> headaches. When someone accidently gives him a gluten item, even

> just half a cracker, I can plan on being up all night for three

days.

Then I would expect that you would probably see some good improvements

with the use of enzymes, and you may be able to add back some/all of

the foods which caused him trouble before. My kids still have to be

gfcf because it appears they are also celiac, so perhaps yours might

also, but my kids basically reacted to all foods, and I have been able

to give them foods now that before enzymes they would react to.

> Did you get treatment as an adult? I've been wondering if, now that

> I know, I should do something about that. I've changed the diet and

> have done some of the O.T. tricks to combat the SID, but I don't

know

> if I could do anything about the AS.

I am about 95% gfcf, and it helps with many things but not all. I

have done basically everything myself, because I have learned from

others that 1. most doctors do not know anything about AS in adults,

only children, and 2. most doctors are too drug-oriented and all the

drugs I ever tried made me worse than I am without them. My son

does not have sensory issues except one which is manageable, but I

do, altho I do not experience them as *integration* issues, so the

things I am doing to help myself are not really SID things. But if

you have specific issues you would like to address, you can email me

off-list and I can give you some ideas.

> Yes, we can't get it. We spoke with a lawyer advocate, and he told

> me that this county in our state (yes, in the US) is terrible for

> special needs kids. They were sued three times last year for abuse

> to special needs kids, and lost, and made no changes. Around here,

> you either home school your special needs kids, move out of the

> county, or accept abuse of your children. Right now, after battling

> with the county for eighteen months, we are looking to move out of

> county.

I know someone else in Kentucky, altho I don't know exactly where, and

she indicates some of these similar problems you describe for her

district also. You are probably wise to move out of county. I

homeschool my kids, so I don't have to deal with this, but I do

advocate for other parents here and elsewhere, who are fighting their

districts.

~~~~~

[From another message]

>I can see that Elijah needs something else. I've suspected an

>allergy to tomatoes, and a possible problem with yeast and food

>colorings, but I just can't bring myself to cut out everything he

>eats.

It may be a tomato allergy, but tomatoes and colorings are high phenol

things, here is more information on that, along with ideas to help

your child process phenols.

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

>I can't even believe that Pep would eliminate the need for the GFCF

>diet. I'd been planning to do it in addition. Oh, and have some

>pre-planned " cheats " , which would be wonderful. So does it really

mean

>we can just go back to eating like normal human beings again???

>

The Peptizyde does seem to help many children begin eating gluten and

casein again, but unfortunately not my children, because they appear

to be celiac, altho I do allow " planned infractions " occasionally.

But you can try introducing those foods again and see if the Peptizyde

allows your son to tolerate them with the enzyme. For my children,

they were gfcf for 18 months before I started enzymes, at first I saw

great improvement even with wheat products, but after about two weeks

I saw small regression which increased each day, but once I removed

the wheat again, my kids were " back to normal " within about 2-3 weeks.

Enzymes allow them to have infractions with no ill effects, but only

if I don't allow infractions more than about 1-2 times each month.

>Yikes! I hadn't even thought about the pill swallowing issue! I

>assume he needs to be able to swallow pills for to be on this Pep!

>Well, I guess we'll try that. I know my oldest sister, at 33 years

>old, is still unable to swallow pills, and I was almost a teenager

>before I could. Is there a way to take the Pep without swallowing it

>as a pill?

I open the capsules and mix them with honey, then spread the honey

onto a cracker, works great and I don't have to worry about how long

it takes the capsules to dissolve.

>Elijah had a lot of problems with sinus infections. 1999 he had 13

>sinus infections and 2 or 3 ear infections, so they took out his

>tonsils and adenoids. He was of course on antibiotics every time.

>And he has been on just about every allergy med they have for kids.

>And albuterol, and some others. But right now he is just on a couple

>mild allergy meds and a bowel med.

I have quite a few allergies, food and environmental, but all of them

are drastically reduced because I removed milk and a few other problem

foods. The enzymes might do this for your son without having to

actually remove the foods.

>I talked to my doctor's nurse when it was time for my baby to get his

>vaccines, and she just rolled her eyes at my questions and wouldn't

>really address them. My baby is six months old now. What vaccines

>should I be concerned with, and what should I do about them?

If the nurse " rolls her eyes " and won't address your questions, you

should complain to your doctor that his nurse is disrespectful of

patients and their concerns, or find another doctor.

Here is my vaccine opinion

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

Here is my entire vaccine section on my site, if you want to do more

research for yourself.

http://home.pacbell.net/cscomp/parentin.htm#vaccines

> >

> Thanks for your support, Dana.

I hope I help you.

Dana

[Guest guest]

excuse the no caps, but my sleeping infant won't be put down.

now, my four and a half year old son elijah, diagnosed asperger's,

sensory integration dysfunction, food intolerances, who is gfcf, has

started the enzymes. there was an immediate and incredible change

after we started the pep, but my husband says to be careful to not

attribute it to the enzymes too quickly. then, three days in to the

pep, we added the other, the hn zyne prime. well, after starting the

pep, he was more communicative, better problem solving, obedient,

understood what was said and responded appropriately, better social

skills, amazing transitioning, etc, etc. now today we started the hn

zyne prime, and i'm wondering who this crazy child is. is he sick or

is this an expected though immediate and it'll wear off side effect.

most of the time, in short doses, people can't guess there is

anything wrong with elijah. but starting one hour after taking the

new enzyme, he was completely out of control for two hours. he

screamed, kicked, hit, threw things. people asked me what his

disability was bec it was obvious this frothing, wild, panicked child

was not normal. he has never tantrumed that strongly before. he had

absolutely no control over his emotions or behavior. i have

suspected phenol problems before, but haven't pursued that. i'm

wondering just if this is a short term response, and if so, how long

should i expect this behavior to continue.

dorcas

[Guest guest]

Dorcas,

I don't recall anyone having this reaction to the Zyme Prime alone.

I would drop it though for a few days. You say he's only been on the

enzymes for several days. It's possible he is going through some

withdrawal, but I would still drop the ZP for now if you are sure the

problems started only after adding it.

Problem behaviors reported here have been from the Peptizyde in some

cases, so you may have to reduce the doses of it, too. The Peptizyde

breaks down the food proteins which is what causes some to experience

the initial opioid withdrawal reaction. You could either try to

weather the storm for two weeks until the withdrawal period should

pass (three weeks max) or try just giving the enzymes with only one

or two meals a day and build back up.

Please post again if this isn't clear.

> excuse the no caps, but my sleeping infant won't be put down.

>

> now, my four and a half year old son elijah, diagnosed asperger's,

> sensory integration dysfunction, food intolerances, who is gfcf,

has

> started the enzymes. there was an immediate and incredible change

> after we started the pep, but my husband says to be careful to not

> attribute it to the enzymes too quickly. then, three days in to

the

> pep, we added the other, the hn zyne prime. well, after starting

the

> pep, he was more communicative, better problem solving, obedient,

> understood what was said and responded appropriately, better social

> skills, amazing transitioning, etc, etc. now today we started the

hn

> zyne prime, and i'm wondering who this crazy child is. is he sick

or

> is this an expected though immediate and it'll wear off side

effect.

> most of the time, in short doses, people can't guess there is

> anything wrong with elijah. but starting one hour after taking the

> new enzyme, he was completely out of control for two hours. he

> screamed, kicked, hit, threw things. people asked me what his

> disability was bec it was obvious this frothing, wild, panicked

child

> was not normal. he has never tantrumed that strongly before. he

had

> absolutely no control over his emotions or behavior. i have

> suspected phenol problems before, but haven't pursued that. i'm

> wondering just if this is a short term response, and if so, how

long

> should i expect this behavior to continue.

>

> dorcas