Regression

[Guest guest]

>>>>>When you talk about " regression " on this list, it seems to me

you are speaking of an increase in undesirable behaviors (stimming,

waking, decreased attention), NOT an actual loss of skills that have

to be re-taught (like, he used to recognize numbers and now he

can't)?

I suppose it could mean either...but usually it refers to more short

term things. Sort of depends on the child. With my older son,

a 'regression' would mean irritability, poor sleep, headaches, not

wanting to transition. With my younger son, it meant bowel/eating

problems; not much behavior.

.

[Guest guest]

Actually regression for us means many things. It just depends on what triggers

the regression. If it is food related I can usually tell initially by his skin

and some behavior regression. If it is yeast I can tell by skin, antsyness,

stimming, anger etc. However, if it is due to medication then it is motor

skills, comprehension, memory, and attention span. These things then have to be

remolded. By that I mean, I go step by step using ABA therapy type methods (

teaching most to least, rather than the neurotypical instruction of least

instruction to most). I find where he has " left off " so to speak, and that is

where we pick up. It becomes very frustrating, for both him and myself. I have

avoided antibiotics for almost a year for this very reason, and yet, this most

recent sinus infection necessitated their use. We saw a breakthrough about half

way through the 10 day treatment, and I had a conversation with my son that I

have been waiting 5 years to have. But it lasted a brief 2 1/2 days, and then he

regressed. In fact, he only went to pre-school one day this week. It's sad,

tiring, and complex. Don't know how old your child is, but if you need tips,

feel free to e-mail. I check almost everyday.

Regression

Hi,

I just want to clarify a point: When you talk about " regression " on this list,

it seems to me you are speaking of an increase in undesirable behaviors

(stimming, waking, decreased attention), NOT an actual loss of skills that have

to be re-taught (like, he used to recognize numbers and now he can't)? Thanks,

Vivi

[Guest guest]

> Hi,

>

> I just want to clarify a point: When you talk about " regression " on

this list, it seems to me you are speaking of an increase in

undesirable behaviors (stimming, waking, decreased attention), NOT an

actual loss of skills that have to be re-taught (like, he used to

recognize numbers and now he can't)? Thanks,

Either. If the child is not doing as well today as yesterday, for

whatever reason, it is many times referred to as " regression " .

Dana

[Guest guest]

For mine it means, losing speech, stimming, headbanging, etc. I

guess that would be both.

Truly,

a

> Hi,

>

> I just want to clarify a point: When you talk about " regression "

on this list, it seems to me you are speaking of an increase in

undesirable behaviors (stimming, waking, decreased attention), NOT

an actual loss of skills that have to be re-taught (like, he used to

recognize numbers and now he can't)? Thanks,

>

> Vivi

>

>

>

>

>

>

>

[Guest guest]

Because my son is SUPER sensitive to all supplements, it sounds to me

like you did a whole lot of things in a very short time. When we

started AFP Pep, my son could only tolerate like a quarter capsule,

and it took months before we were up to a full capsule. Now he's

doing GREAT. I'm not suggesting you should wait months to help your

son, only that maybe a full cap right off the bat was too much.

Maybe back down to a half cap and see if that helps.

Also, if you've been trying foods *with* gluten and casein but

*without* Peptizyde, then your son hasn't been " protected " from those

foods at all. The NF and ZP won't touch gluten and casein.

[Guest guest]

> Hi all,

> I wanted to post our experiences and get feedback.

> We've been on NF and ZP- 1 cap each at dinner- for almost six

> weeks. The first two weeks were great- some increased

> hyperactivity,

Try dropping the ZP. This entire description sounds like an

intolerance to papain/bromelain.

You can try AFP instead of Peptizyde, see if that helps.

> I guess I will go back to taking away all new foods and trying the

> enzymes with his old foods and see if that helps.

This sounds good. Keep the old foods for a while, and just give

enzymes [one at a time]. This will help you determine if he has a

problem with the enzymes themselves, or if it is a new food which he

still can't have, even with enzymes.

Dana

[Guest guest]

Reading your reply, Dana, was interesting.

My son has been on ZP for 11 days and AFP for 7. When he was on the ZP

alone, his hyperactivity shot through the roof. However, when I added in the

AFP,

the hyperactivity came down to its regular level.

Question: To get off GFCF, do we only need the AFP?

Robin

[Guest guest]

HI Dana,

I was assuming the NF would digest the papain/bromelain- but

maybe it isn't. I will go to just NF and see what happens.

Thanks,

Cyndi

> > Hi all,

> > I wanted to post our experiences and get feedback.

> > We've been on NF and ZP- 1 cap each at dinner- for almost

six

> > weeks. The first two weeks were great- some increased

> > hyperactivity,

>

>

> Try dropping the ZP. This entire description sounds like an

> intolerance to papain/bromelain.

>

> You can try AFP instead of Peptizyde, see if that helps.

>

>

> > I guess I will go back to taking away all new foods and trying

the

> > enzymes with his old foods and see if that helps.

>

>

> This sounds good. Keep the old foods for a while, and just

give

> enzymes [one at a time]. This will help you determine if he has

a

> problem with the enzymes themselves, or if it is a new food

which he

> still can't have, even with enzymes.

>

> Dana

[Guest guest]

> HI Dana,

> I was assuming the NF would digest the papain/bromelain- but

> maybe it isn't. I will go to just NF and see what happens.

For some kids yes, others no.

Dana

[Guest guest]

> Reading your reply, Dana, was interesting.

I don't know which reply you are referencing, you did not leave any of

it here in this message.

>

> My son has been on ZP for 11 days and AFP for 7. When he was on the

ZP

> alone, his hyperactivity shot through the roof. However, when I

added in the AFP,

> the hyperactivity came down to its regular level.

Sounds like the AFP addressed the g/c issues that the ZP was not

covering.

>

> Question: To get off GFCF, do we only need the AFP?

That enzyme will digest g/c for most kids, altho some need additional.

For example, for milk, my son needed Peptizyde plus No-Fenol. Some

kids still have problems with g or c or both, even with enzymes.

Dana

[Guest guest]

3 weeks is on average the outer limits of an adjustment, but that is to each

individual enzyme. When parents decide to introduce enzymes, it's often because

their child has been throwing out red flags with regards to food. It's the

perceptive parent that can narrow it down to which foods. What generates the

symptoms, the underlying issue is often damage to the lining of the gut.

Enzymes, at least for my family, allow my son a wider range of foods, while I

unearth the underlying causes for the damage and subsequent symptoms. For some,

enzymes may be a quick fix, but for us, this is not the case. Some of the best

guidance, in laymen terms is from DeFelice's book, one of the things she

writes, is to hold off on challenges for a couple of months. Then to challenge

slowly. It is soooo easy to become overwhelmed. Keeping a diary and going slow (

despite the excitement of improvements) is really the best way to know what is

going on. My son, even now after months on enzymes cannot handle Orange Sunkist

soda, bananas, oranges or orange juice. Food dyes will set him off if there is

too much or it is too frequent. A great example is this Halloween. Skittles (

two or three) once a month or so ( usually a pre-school treat) don't set him

off. However, the last three days of skittles ( the only Halloween candy he can

have) have now set him off. We are seeing the red cheeks with raised bumps, he

is whiny and a wee bit compulsive about stuff. I threw the remainder of the

Halloween candy away tonight. It gets a little sketchy advising other parents,

but if it were me, I'd start over from the beginning, minus the offending foods.

My son has several issues, and so for us, certain foods are just avoided. I can

say that my education with regards to nutrition has made me less enthusiastic

about certain foods, but with this group we don't judge. Good luck to you. By

start over I mean, use enzymes, minus the offending foods, and you may discover,

while the gut is healing or other yeast, bacterial or viral issues are being

addressed, that other foods you were unaware to be problematic are indeed

problems. , Lipski, DeFelice, they all have books

designed to inform and guide as you try to heal/nurture your child.

regression

Hi all,

I wanted to post our experiences and get feedback.

We've been on NF and ZP- 1 cap each at dinner- for almost six

weeks. The first two weeks were great- some increased

hyperactivity, but I gave baking soda and a homeopathic remedy

and that took care of it. I tried 1 cap of Pep once and he had a

huge reaction. During this six weeks we've been trying new

foods- with a lot of success the first couple weeks, and

decresing success as we've gone on. I feel like now with each

day that goes by he is regressing more- his symptoms mainly

consist of hyperactivity and OCD stims.

My feeling is that it is a combination of die-off and that I've been

going too fast with food re-intros. But the foods were going fine

the first couple of weeks.

now the baking soda seems to not have any effect on the

hyperactivity, and he is going to bed later and later every night,

waking up tired in the morning.

I tried activiated charcoal -1 pill, thinking it might help with the

yeast- and he had a huge, huge reaction.

I also tried epsom salt baths and magnesium supplements

which helped at first but now just make him worse.

I am starting to feel like I am in over my head. I thought the

die-off, adjustment was supposed to last around three weeks.

I guess I will go back to taking away all new foods and trying the

enzymes with his old foods and see if that helps.

[Guest guest]

Anyone know the odds of a 9 month old regressing? Thanks!

[Guest guest]

Thanks Tina, He has developed cough and flu like symptoms from yesterday..

________________________________

From: trmckenna1 <trmckenna1@...>

Sent: Monday, January 26, 2009 11:01:22 AM

Subject: [ ] Re: Regression

Hi Roopa:

Below is an archive message that wrote for causes of

regressions that she has seen in her son ph. In my house, my son

will get slurry speech when he is getting sick. I can usually tell

when he is getting sick before he even mentions feeling yuck.

HTH,

Tina

------------ --------Beginnin g of archive----- --------- ------

One reassuring thing we have found is that the set-backs are all

reversible, at least in ph.

Causes of set-backs/regressio ns in my experience:

1. Fish oil gone bad. If old, left out of the fridge, top off the

liquid or heated (ie left in hot closet...even the pills)...the fish

oil oxidizes and is pretty much toxic, depleting your body of

antioxidants (particularly vit E)...to detoxify it.

Start a fresh bottle.

2. Illnesses - simple colds and otherwise benign viruses seem to

induce regression that is temporary. (suspect that like triggering

asthma...the viral illnesses are triggering enough inflammation to

effect the apraxia symptoms).

3. Not getting in or taking the supplements. ..like when he is sick or

with stomach flu...vomiting and not keeping anything down. No

supplements = regressions in our house. Or if doses were skipped for

some reason (ie babysitter forgot etc).

4. Exposures to allergens - eating the foods he is allergic to. We

have seen this so many times that I am now 100% sure it is a trigger

for neurological symptoms...at least in my boys. In addition to

gluten and milk, ph has a now documented yeast/mold allergy (skin

test positive, confirms his penacillin allergy that we knew about

from an antibiotic reaction too, but also tested positive to baker's

yeast (so no baked goods with yeast or fermented items)...but also

some supplements like selenium, and vit B complex are made from

yeast...so if you have a true yeast allergy...you will react. Lipase

is made from aspergillus (a mold)...again will induce an allergic

reaction in those allergic to aspergillus. Yeast ingestion was the

cause of the regression back in Sept...not only did he have a cold,

but I started baking bread with the new bread-maker that had a gluten-

free cycle. We did not regain the losses until he was started on

nystatin (an antifungal - started for thrush he had from his inhaled

steroid asthma medicines). (But I was continuing to give him bread

and expose him to yeast). The antifungal was not treating " toxic

yeast " as much as it was helping decrease the burden of an allergen

in a truly yeast-allergic child. Unfortunately mold and yeast is

everywhere. But it can be avoided in foods, and that has make a huge

difference.

5. Starting supplements that are made from molds or yeast : lipase,

selenium - induced BAD regressions that I only now understand after

figuring out the yeast allergy, and then investigating the

manufacturing of every supplement he had an adverse reaction to.

6. Weaning his asthma medicines caused regressions. So seems that

the anti-inflammatory effects of Jospeh's asthma medicines were

helping his apraxia. Makes sense if there is an allergic link to the

cascade of inflammation in kids like ph. ph lost significant

amount of speech when we took him off his inhaled steroids...regained

losses and had a huge surge when we started him on singulaire.. .a

different form of asthma med. Fish oil also has anti-inflammatory

effects. Perhaps this is one way it is helping our kids. Vit E is a

potent antioxidant. At least in our case...the root of the apraxia

keeps pointing back to allergic disease and inflammation of the gut.

In children with multiple food allergies... would make sense that a

casein-gluten free diet would help.

Every child is different... but if there is a regression in an apraxic

child, there is likely an explanation. Have you changed brands of

vitamins/fish oil or vit E? Not all are the same, even if the labels

look like they should be the same. You need to be a detective to

figure it out.

-

>

> my son seemed to have regressed from two days, he has been on fish

oil , vitamin E, phospholine from over a year and Cod liver

oil,piracetum and glutonine from one month,  He has seemed to regress

socially, and need prompts to respond when his name is called. I have

never seen this happen to him in the past, he was gaining steady

progress . I have been testing him to see if he has lost words , he

has not , but the speech is not clear and the eye contact is not

their. please advise , if some one has gone through this phase.

>  

> thanks,

> roopa

>

>

>

>

>

[Guest guest]

OMG - does fish oil go bad if it's not refrigerated?  Our fish oil is in the

medicine cabinet.  Should I start refrigerating it?

[Guest guest]

Yes. You should refrigerate it always!!

Re: [ ] Re: Regression

OMG - does fish oil go bad if it's not refrigerated? Our fish oil is in the

medicine cabinet. Should I start refrigerating it?

[Guest guest]

Gretchen it depends on the oil. Is it in the capsule (then it's fine)

or the bottle? (then throw it away!!!!)

(Colleen the NN fish oil capsules do not need to be refrigerated)

If you use the oil in the bottle that's fine if you give it to more

than one child- go through it quickly. But as I pointed out to many

parents and professionals now for almost a decade (or as long as the

oil in the bottle has been around which was since Tanner was

diagnosed!) -think about it...if the shelf life of the oil in the

bottle is only 4 months -is the oil you are giving your child on day

60 as low in peroxide (rancidity) as it was on day one? With the

capsule I'd say yes -for the bottle oil I'd say no.

As I've written for almost a decade now - the oil in the bottle may

seem easier -but it may not be the best as far as purity. With fish

oils all that matter are formula, dosage and purity of the oils.

Here's just one archive I wrote about this in 2003.

Re: new aversion to fish oil

Hi Renn!

Pierce one capsule and smell the oil. The oil should smell like fresh

lemony fish, not rancid fish.

I have been using the Nordic Naturals brand for years now and never

had this problem with Tanner except when we tried to switch him to

the ProEFA oil (without the capsule -the oil in the glass bottle -boy

this is confusing to explain!!)

Also -the capsules do not require refrigeration, just a cool dry

place. How long have you been putting them in the refrigerator? I

know that when refrigerated -the capsules get hard -and it may take

longer for the oil to get out.

Do you (for lack of a better word sorry) burp after taking the

oils? You should not. If you do it may mean that oxygen got into

the oils which would mean they have some rancidity to them -return

them and report this. I know Nordic Naturals raised the Vitamin E

slightly...and they change the bottle design weekly at this point

(and yet they all still look remarkably the same!) but other than

that the formula is still the same as it always was -and they are a

great company. Believe me I've tried to get them to change it and

up the EPA -but nope. So other than refrigeration -not sure and

never heard of this before -no complaints reported here or to me before.

If they pass the smell taste then

try not refrigerating and see what happens.

=====

[Guest guest]

Our Ultimate Omega capsuls states to " store in a cool, dry place, away from

sunlight "