Introduction and questions

[Guest guest]

> I'm new here and want to introduce myself. My name is Crystal and I

have a 7

> year old daughter that has been on the feingold diet for the past 3

years.

> Thanks!

> Crystal in WV

>

Hi Crystal;

Just wanted to tell you - welcome! I am also a Feingold mom - my dd

Lara, 6.6 years old, has been on Feingold for about 13-14 months now.

We also love it - but in its modified version. We are doing phase 2

and more - all thanks to HNI enzymes. No-fenol allowed us to bring

most of the fruits and veggies back into Lara's diet (except for

berries and grapes), plus some junk food every once in a while

(although very rarely). We are still staying clear of all the

artificials and additives (as much as humanly possible :-)). We

started No-fenol 10 months ago and AFP-Pep 8 months ago and just love

them. We started very slowly (a sprinkle of enzyme on food), and are

still giving a very low amount (1/6 of a capsule per meal/snack).

The first few days/weeks on enzymes can get a bit rocky, but the long

term benefits are great. We love our enzymes and will be ordering

them soon again.

Good luck,

Rubby, mom to Lara, 6.6 yr.o., with DSI, APD, Visual Processing

disorder, S & L delay, LD (NLD?), ADD, eczema, food sensitivities . . .

[Guest guest]

Hi Crystal

Sam used to have the distended tummy, I think yeast and or parasites were

connected to that. He does not have it now We have been off diet with HNI

nearly 2 years, very low/no sugar is essential to keep yeast at bay for Sam

and we still avoid MSG and Aspartame. Good luck the book and the enzymes are

great!

MAndi in UK

> One question I wanted to ask is about a distended abdomen. My daughter has

> had one ever since I can remember. When we went GF/CF it went down quite a

> bit but it will still balloon up again even when I can't think of any

> infraction. Are there other things that can cause a distended abdomen and

> has anyone else had this problem and had it resolved with enzymes?

>

[Guest guest]

>>When we went GF/CF it went down quite a

> bit but it will still balloon up again even when I can't think of

any

> infraction. Are there other things that can cause a distended

abdomen and

> has anyone else had this problem and had it resolved with enzymes?

If it comes and goes, and reduced with gfcf, it is probably either

another food she has problems with, or yeast. You can keep a food

journal to find other foods which might be a problem. Enzymes can

help with this. No-Fenol enzyme also helps with yeast.

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

Dana

[Guest guest]

Resolved the problem for several family members including my son with a very

strong pro-biotic combined with the enzymes.

Introduction and questions

Hello,

I'm new here and want to introduce myself. My name is Crystal and I have a 7

year old daughter that has been on the feingold diet for the past 3 years.

About 2 years ago, we also removed all dairy products and then this past

summer we removed gluten, soy, and eggs after an IgG food allergy panel

indicated that they must go.

My daughter has made wonderful progress with the diets and additional

therapies and in the beginning, I was so grateful to have found the diet.

I'm still grateful but grow to hate this restricted lifestyle more and more

every day. So I decided to join this list and find out for myself the

experiences all of you have had with enzymes. I've been lurking for several

days now and I've really learned so much. Thanks to you all! I have placed

the order for the Houston enzymes and DeFelice's book and we are

hoping against hope that this will work for us.

One question I wanted to ask is about a distended abdomen. My daughter has

had one ever since I can remember. When we went GF/CF it went down quite a

bit but it will still balloon up again even when I can't think of any

infraction. Are there other things that can cause a distended abdomen and

has anyone else had this problem and had it resolved with enzymes?

Thanks!

Crystal in WV

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[Guest guest]

You are amazingly with it, that is a lot of time, knowledge, discomfort, and

concern to have handled. We too are dealing with a nasty fungal issue. Houston

enzymes are really rather different from other enzymes. Despite not having the

fungal or viral issue resolved, we were able with the help of probiotics, and

Ojibwa Tea and enzymes to reintroduce many foods to my son's diet. Had a 96 food

tolerance test done, and he is handling everything just fine, including oats.

Haven't tempted fate with casein or other gluten products yet, only oats. I

would definitely read the books before trying enzymes. I don't know if staying

home with your child is an option, at least during the adjustment phase of

enzymes, but I couldn't even take my son outside to play during the worst of his

adjustment phase.

Introduction and questions

Hello everyone,

I've been reading this list since July and am truly impressed by

this group's membership. As a group you are wise, informed,

courageous and generous. I have obtained 's book, along with

Jacquie McCandless'book. I'd hoped to be able to read and absorb

all of both before posting, but find that my questions won't wait.

So I'll give you my daughter's history for now and ask some

questions.

My daughter is now five years old. She has a history similar to

others I've read here. We began interventions very early with the

support of some very helpful and informed professionals. As a

result, our daughter can be placed somewhere on the ASD spectrum,

but is probably functioning better than she would have if we'd

followed doctor's orders along the way. She is now a child who has

tactile and auditory sensitivities, is very anxious and can have

explosive behavior. She has the extreme and wide-ranging food

sensitivities which exacerbate her symptoms. She'd prefer to

interact with adults (mostly soft-spoken women) and has many

anxieties about playing in proximity with other children. My

husband and I take turns serving as her support shadow in a small

kindergarten.

I consulted with nutritionist, Dorfman, when Aidan was 9 weeks

old. She helped with the diet elimination and suggested

supplementing with probiotics. We used ginger tea to help with the

reflux. I began using Lipase with my meals. We refused all

vaccinations except the polio injections (still unaware of

Thimerosol) because we were worried about her having contact with

children who'd had the oral dose and might shed the virus. With all

of these interventions, things improved. Aidan continued to need a

tremendous amount of support to remain calm, but with that help,

began to take greater interest in her surroundings, including us.

She became an early talker (7 mo.) and walker (9 mo.).

With the introduction of foods came constipation and head-to-toe

rashes. We stopped solids and postponed reintroduction until twelve

months. The rashes resolved along with the constipation. More food

eliminations on my part helped with the reflux (nuts, especially).

After her first birthday, I started offering solids again at the

urging of her pediatrician (how I wish now I'd waited). She

developed eczema again and started averting gaze if anyone

approacher her with facial expressions and vocal tones that were too

animated. She had a fever at 15 months that seemed to trigger the

most problems. She narrowed her diet to rice pasta only (from

having enjoyed a range of fruits and vegetables). She became

somewhat obsessive, very obstinate, refusing to wear clothes (not

bad if we lived in the tropics) and ride in her car seat.

I worked closely with and also referred her for OT and

speech/eating evaluations. With ideas from those professionals, we

made some progress with food tolerance and dressing. Setbacks

included three weeks of prophyllactic antibiotics following a dear

tick bite, and treatment with Nystatin. This involved pinning her

down twice daily to administer the meds. We began using vitamins

and started testing her urine through Great Plains Labs. She had

yeast and clostridia overgrowth and needed glutathione supplements.

We continued probiotics, adjusted vitamins and managed to improve

her weight. We began giving lipase for meals that included fats,

which helped reduce gassiness. I took her to a toddler gym program,

but she stood still in the middle of the room and warded off any

social advances by other children. If I took her to the park at

night after the other children went home, she ran around and enjoyed

herself immensely, looking very typical. At the same time, she was

teaching herself to read.

In the fall of 2000, when she was over two, she began having

respiratory symptoms, mostly snoring at night. Along with other

interventions, we attempted using dairy-free beef colostrum to

support her gut functioning. The reaction was violent...vomitting,

diarrhea and the most severe regression in organized behavior to

date.

The OT re-evaluated her and recommended direct intervention and

referred us to a developmental pediatrician. At her recommendation,

we continued supplementing essential fatty acids, began using

Permavite to heal the gut, and goldenseal to fight the yeast and

other dysbiosis issues. We switched to Jarrodophilus as the new

probiotic. A subsequent blood test for food allergies revealed

additional sensitivities that we hadn't known about before. When I

eliminated those foods (all legumes, tuna, cod, peppers, tomatoes,

etc.), things improved dramatically.

Following those improvements, we tried starting dha (neuromins)and

Enzymaid Jr. Her response to the dha was to stop eating completely,

so we had to stop that. We had the same response, along with more

tantrumming/aggression with the enzymes, so we stopped them as well

after much tinkering with dosages, etc. The doc concluded that

she's just one of the more sensitive children she's encountered. We

switched to a new nutritionist, Dana Laake, who has a strong working

relationship with the dev. ped.

We now had a child who appeared more neurotypical, but with high

anxiety, a need to be in total control of her environment, and a

tendency to act out aggressively or to be verbally abusive when

things went other than planned. We kept up with OT and went through

a long list of mental health professionals, all of whom were more

interested in diagnosing the pathology of the parents and

hyperfocusing on weaning than on finding ways to support the

functioning of this child. We made progress with respect to her

eating a variety of textures of food. She remained wary of other

children, at best, and totally resistant to the idea of separation

from me.

Prior to preschool, we consented to diptheria/tetanus (minus

thimerosol) immunizations. She reacted a week later with a huge

welt at the site, followed at two weeks by an unexplained high

fever, delerium, and muscle twitching of her extremities. Her

pediatrician says we are now done attempting to immunize this child.

Preschool was a wash-out, but we joined a parent-child group with

much younger children and a gifted, open-minded teacher. Aidan made

a lot of progress in socializing with selected other children on

her " good " days, and was willing to interact with other adult

caretakers to the point that I could leave the room for short

periods by the end of last school year.

Due to the high anxiety and occasional episodes of out-of-control

behavior, we contacted the Pfeiffer Center and had our evaluation in

May. Aidan's tests showed a copper/zinc imbalance, zinc deficiency

and undermethylation. She has more mercury and some other toxic

metals than advisable, but not astronomical levels. Her gut

dysbiosis is still severe, with yeast at 4+ and B. cerius (sounds

like a joke, but it's not). They recommended a new regimen, which

we took to the nutritionist and had compounded. We went totally

GFCF (we just needed to eliminate oatmeal...otherwise we'd been

doing it for two years at least).

We started very slowly, but had immediate improvement just from

introduction of a new multi-vitamin and a calming vitamin,

containing GABA, 5-HTP and Inositol. Aidan became a calmer, happier

little girl who could work through difficulties, could participate

in a playgroup with other children. Her reactions were less extreme

and were over within five minutes!!!!!!

We introduced culturelle as the new probiotic. She had the age-old

irritated red ring around her anus, but this time without the

accompanying wild and angry behavior. The reaction cleared up in

one day, so we pressed on. Then we introduced the new B vitamins

(including b-12, no folic acid, and TMG). Her appetite ceased. I

was frantic, because we'd enrolled her in a wonderful private

kindergarten and we needed to have her eat breakfast and be ready to

interact with others by 8AM and she wasn't getting hungry until

after 2 in the afternoon! Eventually we had to back off completely,

stopping all probiotics, anti-fungal/biotics and vitamins for a few

days to give her gut/system a rest. We managed to get some of her

appetite back (but it has never returned fully). She's back on the

multi-vitamin, calming and night-time cal/mag/selenium/E. We give

her extra inositol at snack-time, and this seems to help her get

through the morning with minimal panicking.

I'm struggling with the gut issues right now. Since the end of

August, we've tried to reintroduce the culturelle, but this resulted

in irritability and aggression, so that was scrapped in order to

allow her to start school without trauma. We started ProbioGold

last weekend (just the tiniest smidge from an opened capsule) and

saw slightly increased irritability, but decided to continue. Last

Friday, she asked us not to give it to her, saying, " it makes me

feel mean. " Her teacher is not terrifically understanding of the

mood swings (I do understand how seeing better behavior has a

tendency to raise one's expectations), and neither of us want to set

her up as the kid the teacher wishes wasn't in the class. So, we

stopped it as well.

I'm worried about what will happen in her gut if we just stop trying

the probiotic/anti-fungal route for now. The die-off is really

difficult to deal with, but I worry what's brewing in there and what

its effect will be if we leave it alone. The dev. ped. said we can

at least have some more biotin added to vitamins to prevent yeasts

from changing to the form that hurts the gut lining.

Are there other probiotics that may be worth trying? Is it just a

matter of weathering the die-off " storms " until her gut clears

enough of it? What are the risks of continuing on the probiotics

when die-off is happening? We use alka seltzer gold to reduce the

reaction, with some success. Are there any other ideas? We've got

reduced glutathione and methyl-b12 skin creams yet to try, but

haven't while this other issue remains unresolved.

My daughter cannot tolerate me writing this any longer. I am very

grateful to anyone who would read this long post and respond if you

have any suggestions. Thank you again.

Sincerely,

Carla Hancock

[Guest guest]

In a message dated 11/26/03 6:25:24 PM, showbeagle@... writes:

<< I have

IBS so I'm sure must have it too and this contributes to his

moodiness and irritability. >>

,

You might want to check out SCD, a diet that's very good for IBS and autism

(at least the kids with GI problems). <A HREF= " http://www.pecanbread.com/ " >

PecanBread.com - Treating Autism with the Speci…</A>

As for the Pep, cutting back was probably a good idea. As a general rule,

starting slow and being ready to ride out some adjustments is helpful. It could

take as long as a month for him to get used to the (good!) effects of the

enzyme. Zyme Prime is the one that most often produces the Happy Child Effect,

so

if your son is grouchy that might be a good thing to start.

Nell

[Guest guest]

Good be " withdrawal " symptoms from gluten.

Deborah

I started

> on AFP Pep 2 weeks ago (1 cap per meal) along with being on

a

> milk-free diet. Challenging him with milk a month ago made him

revert to

> autistic behaviors, most notably perseverative activities and loss

of

> speech and cognition so I substituted with rice milk once again.

He has

> become very hyper and difficult the last few days, I've cut back

on the Pep

> to 1/2 cap per meal.

[Guest guest]

,

I would talk to Dr. Devin Houston about the Zyme Prime. It could be

helpful along with the AFP Peptizyde. I believe he's coming out

with a new Zyme Prime soon that won't be as reactive to some of us

who have reactions to the current Zyme Prime. I'm looking forward to

giving that a try as well!

Also, did you start the Peptizyde slowly? 1 capsule would have been

too much for my children to begin with. We had to start off with

1/8 capsule and then slowly move up over a week or so to 1 full

capsule per meal/snack.

Best wishes,

Gretchen

> I've been lurking for a few weeks and wanted to introduce

ourselves. I'm

> and have 2 children -- Haley is 5 and has no developmental

issues,

> is almost three and was diagnosed with PDD last spring. I

started

> on AFP Pep 2 weeks ago (1 cap per meal) along with being on

a

> milk-free diet. Challenging him with milk a month ago made him

revert to

> autistic behaviors, most notably perseverative activities and loss

of

> speech and cognition so I substituted with rice milk once again.

He has

> become very hyper and difficult the last few days, I've cut back

on the Pep

> to 1/2 cap per meal. His stools have not been formed for over 3

months now,

> he tested negative for celiac and for IgG antibodies (blood

tests). I have

> IBS so I'm sure must have it too and this contributes to

his

> moodiness and irritability.

>

> I'm wondering what to do next -- I've read about adding Zyme Prime

and

> doing the Epsom salts, I'm trying to find out if there is still

some

> underlying medical issue. I've read that it could be yeast too. He

hasn't

> been tested for yeast yet -- what type of test determines this?

>

> also has sensory integration disorder -- maybe the enzymes

have

> caused him to be hyper and over responsive to stimuli because his

body is

> ridding itself of toxins?

>

> I have many questions and I'm trying to do the right things to

help .

> I'd appreciate your input,

>

>

>

> son

> Haley (5, typically developing little girl)

> (almost 3, PDD/DSI)

[Guest guest]

> Hi .

>

> Have you read DeFelice¹s book Enzymes for Autism? This book can help you

> get a big picture of what might be going on.

> https://www.enzymestuff.com

>

> My daughter had a stool test and an Organic Acid test that looked for yeast

> among other things. One was positive, the other not. I don¹t know if the test

> was all that helpful. If you suspect yeast, there are many OTC remedies you

> can try. Grapefruit Seed Extract seems to be the favorite. You can buy it at a

> HFS in liquid form.

>

> I think it is always a good idea to start with one thing at a time and get

> adjusted. The adjustment took us three difficult weeks at a full cap dosage.

> In hindsight, I would have cut the dose like you have and gone up. I used Pep

> first, dropped the diet and later added Zyme. There probably isn¹t any magic

> way to do it. Zyme Prime might help firm up the stool.

>

> Serena

[Guest guest]

Serena,

With your tests, how did they explain that one test showed yeast and one did

not? I am thinking of ordering a bunch of tests from Great Plains and these are

2 of them. I thought that these tests were suppose to actually add some more

concrete evidence to what's going on with our kids.

Am I missing something, or possibly did you have the test preformed at 2

different facilities?

Thanks,

Kari

Re: Introduction and Questions

> Hi .

>

> Have you read DeFelice¹s book Enzymes for Autism? This book can help

you

> get a big picture of what might be going on.

> https://www.enzymestuff.com

>

> My daughter had a stool test and an Organic Acid test that looked for yeast

> among other things. One was positive, the other not. I don¹t know if the

test

> was all that helpful. If you suspect yeast, there are many OTC remedies you

> can try. Grapefruit Seed Extract seems to be the favorite. You can buy it at

a

> HFS in liquid form.

>

> I think it is always a good idea to start with one thing at a time and get

> adjusted. The adjustment took us three difficult weeks at a full cap dosage.

> In hindsight, I would have cut the dose like you have and gone up. I used

Pep

> first, dropped the diet and later added Zyme. There probably isn¹t any magic

> way to do it. Zyme Prime might help firm up the stool.

>

> Serena

[Guest guest]

,

Welcome to this list - it's a wonderful, informative, supportive and

thoroughly great group of people who seem to have limitless patience

and a generosity beyond the call... I'm sure those with some

insight and experience will give you lots of great info!

is fortunate to have you for a mom!

Jaci, Australia

> I've been lurking for a few weeks and wanted to introduce

ourselves. I'm

> and have 2 children -- Haley is 5 and has no developmental

issues,

> is almost three and was diagnosed with PDD last spring. I

started

> on AFP Pep 2 weeks ago (1 cap per meal) along with being on

a

> milk-free diet. Challenging him with milk a month ago made him

revert to

> autistic behaviors, most notably perseverative activities and loss

of

> speech and cognition so I substituted with rice milk once again.

He has

> become very hyper and difficult the last few days, I've cut back

on the Pep

> to 1/2 cap per meal. His stools have not been formed for over 3

months now,

> he tested negative for celiac and for IgG antibodies (blood

tests). I have

> IBS so I'm sure must have it too and this contributes to

his

> moodiness and irritability.

>

> I'm wondering what to do next -- I've read about adding Zyme Prime

and

> doing the Epsom salts, I'm trying to find out if there is still

some

> underlying medical issue. I've read that it could be yeast too. He

hasn't

> been tested for yeast yet -- what type of test determines this?

>

> also has sensory integration disorder -- maybe the enzymes

have

> caused him to be hyper and over responsive to stimuli because his

body is

> ridding itself of toxins?

>

> I have many questions and I'm trying to do the right things to

help .

> I'd appreciate your input,

>

>

>

> son

> Haley (5, typically developing little girl)

> (almost 3, PDD/DSI)

[Guest guest]

> on AFP Pep 2 weeks ago (1 cap per meal) along with being on a

> milk-free diet. Challenging him with milk a month ago made him revert to

> autistic behaviors, most notably perseverative activities and loss of

> speech and cognition so I substituted with rice milk once again.

For my son, he needed Peptizyde AND No-Fenol enzyme to have milk.

He has

> become very hyper and difficult the last few days, I've cut back on the Pep

> to 1/2 cap per meal. His stools have not been formed for over 3 months now,

Consider adding No-Fenol enzyme for this also.

> I'm wondering what to do next -- I've read about adding Zyme Prime

You can consider adding this also.

> also has sensory integration disorder -- maybe the enzymes have

> caused him to be hyper and over responsive to stimuli because his body is

> ridding itself of toxins?

Perhaps. But many SID kids are phenol intolerant.

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

Dana

[Guest guest]

Kari,

I really can¹t add much else. mentioned that stool tests are not

reliable indicators of yeast. Our stool test was done locally in WA. The

OAT test from Great Plains did show high arabinose which indicated yeast. I

have noticed a big difference in my 7yo since treating for yeast and

starting enzymes. She longer longer craves sweets like before. In fact she

went cold turkey on juice after we did the OAT test in the summer (no apple

juice allowed prior to test). Now all she drinks is water.

Serena

> Serena,

> With your tests, how did they explain that one test showed yeast and one did

> not? I am thinking of ordering a bunch of tests from Great Plains and these

> are 2 of them. I thought that these tests were suppose to actually add some

> more concrete evidence to what's going on with our kids.

> Am I missing something, or possibly did you have the test preformed at 2

> different facilities?

> Thanks,

> Kari

[Guest guest]

interestingly i have been drinking an organic grape juice that really

sets off a craving for more of it.

the juice smells quite yeasty now i think of it.

i suppose it has a fair background of yeast spores in it. wether they

are of a type to do well in the intestine.....makes you wonder a bit.

maybe its fermentation by products already in the juice?

apple and pear juice have sorbitol which is a complex sugar that

feeds the wrong gut flora and grape juice is supposed to be ok but

its like honey, supposedly simple suagrs and scd legal, in fact

depending on heat treatment age and type then you can get a

reasonable amount of complex and di sugars and also the mass of

straight mono sugars may be a problem.

> Kari,

> I really can¹t add much else. mentioned that stool tests are

not

> reliable indicators of yeast. Our stool test was done locally in

WA. The

> OAT test from Great Plains did show high arabinose which indicated

yeast. I

> have noticed a big difference in my 7yo since treating for yeast and

> starting enzymes. She longer longer craves sweets like before. In

fact she

> went cold turkey on juice after we did the OAT test in the summer

(no apple

> juice allowed prior to test). Now all she drinks is water.

>

> Serena

>

> > Serena,

> > With your tests, how did they explain that one test showed yeast

and one did

> > not? I am thinking of ordering a bunch of tests from Great

Plains and these

> > are 2 of them. I thought that these tests were suppose to

actually add some

> > more concrete evidence to what's going on with our kids.

> > Am I missing something, or possibly did you have the test

preformed at 2

> > different facilities?

> > Thanks,

> > Kari

>

>

>

>

>

[Guest guest]

Carla, Thanks for your reply. You are probably in a much

different place than you were in September when you wrote this.

My daughter is 2 1/2 and has had a lot of similar issues.

I am going to insert in your original post--hope you don't mind

time traveling back to September.

> Hello everyone,

>

> I've been reading this list since July and am truly impressed by

> this group's membership. As a group you are wise, informed,

> courageous and generous. I have obtained 's book,

along with

> Jacquie McCandless'book. I'd hoped to be able to read and

absorb

> all of both before posting, but find that my questions won't wait.

> So I'll give you my daughter's history for now and ask some

> questions.

>

> My daughter is now five years old. She has a history similar to

> others I've read here. We began interventions very early with

the

> support of some very helpful and informed professionals. As a

> result, our daughter can be placed somewhere on the ASD

spectrum,

> but is probably functioning better than she would have if we'd

> followed doctor's orders along the way. She is now a child

who has

> tactile and auditory sensitivities, is very anxious and can have

> explosive behavior. She has the extreme and wide-ranging

food

> sensitivities which exacerbate her symptoms.

Lucy has all of these! She was a very big baby , so when she

wasn't meeting phyysical milestones early on we attributed it to

that. She had very strange bowel issues--at 6 mos started blood

and mucous in her stool--allergies never suggested. I introd

some solids which stopped (or masked?) this. Problems again

when I introd wheat and dairy.--horrible raw " target " rash and

constipation (7 days between poops). Took a couple of months

(docs no help) to figure out allergies and since then she has

become more reactive to foods. Now she's completely gf/cf, and

we do a rotation diet and enzymes trying to prevent more

allergies.

She'd prefer to

> interact with adults (mostly soft-spoken women) and has many

> anxieties about playing in proximity with other children.

Same with Lucy. If we take her anywhere , she is always trying to

avoid being near people. Forget the shoe store--anyone

approaching to help us sends her into a complete tizzy.

Playgroups from early on have been disasterous. Even her

special ed class is tough. She has great language but can't

stand other kids to be near her and doesn't want to take any

direction from teachers.

My

> husband and I take turns serving as her support shadow in a

small

> kindergarten.

>

>

>

>

> I consulted with nutritionist, Dorfman, when Aidan was 9

weeks

> old. She helped with the diet elimination and suggested

> supplementing with probiotics. We used ginger tea to help

with the

> reflux. I began using Lipase with my meals. We refused all

> vaccinations except the polio injections (still unaware of

> Thimerosol) because we were worried about her having

contact with

> children who'd had the oral dose and might shed the virus.

With all

> of these interventions, things improved. Aidan continued to

need a

> tremendous amount of support to remain calm, but with that

help,

> began to take greater interest in her surroundings, including

us.

> She became an early talker (7 mo.) and walker (9 mo.).

>

> With the introduction of foods came constipation and

head-to-toe

> rashes. We stopped solids and postponed reintroduction until

twelve

> months. The rashes resolved along with the constipation.

More food

> eliminations on my part helped with the reflux (nuts,

especially).

So familiar.

>

> After her first birthday, I started offering solids again at the

> urging of her pediatrician (how I wish now I'd waited). She

> developed eczema again and started averting gaze if anyone

> approacher her with facial expressions and vocal tones that

were too

> animated. She had a fever at 15 months that seemed to

trigger the

> most problems. She narrowed her diet to rice pasta only (from

> having enjoyed a range of fruits and vegetables). She became

> somewhat obsessive, very obstinate, refusing to wear clothes

(not

> bad if we lived in the tropics) and ride in her car seat.

>

Lucy is extremely obstinate--getting out of the house often

involves a fight and sometimes ends up with me crying as I'm

backing out of the driveway. She doesn't want to be

touched--that seems to be the problem because she still needs

help walking down the steps, getting in the car, etc.

> I worked closely with and also referred her for OT and

> speech/eating evaluations. With ideas from those

professionals, we

> made some progress with food tolerance and dressing.

Setbacks

> included three weeks of prophyllactic antibiotics following a

dear

> tick bite, and treatment with Nystatin. This involved pinning her

> down twice daily to administer the meds. We began using

vitamins

> and started testing her urine through Great Plains Labs. She

had

> yeast and clostridia overgrowth and needed glutathione

supplements.

> We continued probiotics, adjusted vitamins and managed to

improve

> her weight. We began giving lipase for meals that included

fats,

> which helped reduce gassiness. I took her to a toddler gym

program,

> but she stood still in the middle of the room and warded off any

> social advances by other children. If I took her to the park at

> night after the other children went home, she ran around and

enjoyed

> herself immensely, looking very typical.

Even by herself at the park Lucy isn't quite typical because of her

physical delays. She walked at 20 months and is still physically

cautious.

At the same time, she was

> teaching herself to read.

>

> In the fall of 2000, when she was over two, she began having

> respiratory symptoms, mostly snoring at night. Along with

other

> interventions, we attempted using dairy-free beef colostrum to

> support her gut functioning. The reaction was

violent...vomitting,

> diarrhea and the most severe regression in organized

behavior to

> date.

The first time I started Lucy on enzymes (about a month

ago--disaster. I gave her a break and started more slowly--going

better. We are about to start the Transfer factor (colostrum--I'll be

curious to see how she reacts). We started B12 injections 2

days ago-so far so good. We will start a compounded vit/mineral

supp soon, as well as Cod liver oil. We are going very slowly.

We are trying to prepare for chelation. According to Drs Data hair

elements test she has heavy metal toxicity. I do too and she is

still nursing so I'm trying to decide about weaning.

> The OT re-evaluated her and recommended direct intervention

and

> referred us to a developmental pediatrician. At her

recommendation,

> we continued supplementing essential fatty acids, began

using

> Permavite to heal the gut, and goldenseal to fight the yeast and

> other dysbiosis issues. We switched to Jarrodophilus as the

new

> probiotic. A subsequent blood test for food allergies revealed

> additional sensitivities that we hadn't known about before.

When I

> eliminated those foods (all legumes, tuna, cod, peppers,

tomatoes,

> etc.), things improved dramatically.

>

> Following those improvements, we tried starting dha

(neuromins)and

> Enzymaid Jr. Her response to the dha was to stop eating

completely,

> so we had to stop that. We had the same response, along

with more

> tantrumming/aggression with the enzymes, so we stopped

them as well

> after much tinkering with dosages, etc. The doc concluded that

> she's just one of the more sensitive children she's

encountered. We

> switched to a new nutritionist, Dana Laake, who has a strong

working

> relationship with the dev. ped.

>

> We now had a child who appeared more neurotypical, but with

high

> anxiety, a need to be in total control of her environment, and a

> tendency to act out aggressively or to be verbally abusive when

> things went other than planned. We kept up with OT and went

through

> a long list of mental health professionals, all of whom were

more

> interested in diagnosing the pathology of the parents and

> hyperfocusing on weaning than on finding ways to support the

> functioning of this child.

I went to one mental health professional and knew it was a dead

end when she was disapproving about the nursing and that we'd

never left her overnight.

We made progress with respect to her

> eating a variety of textures of food. She remained wary of other

> children, at best, and totally resistant to the idea of separation

> from me.

>

> Prior to preschool, we consented to diptheria/tetanus (minus

> thimerosol) immunizations. She reacted a week later with a

huge

> welt at the site, followed at two weeks by an unexplained high

> fever, delerium, and muscle twitching of her extremities. Her

> pediatrician says we are now done attempting to immunize

this child.

>

> Preschool was a wash-out, but we joined a parent-child group

with

> much younger children and a gifted, open-minded teacher.

Aidan made

> a lot of progress in socializing with selected other children on

> her " good " days, and was willing to interact with other adult

> caretakers to the point that I could leave the room for short

> periods by the end of last school year.

>

> Due to the high anxiety and occasional episodes of

out-of-control

> behavior, we contacted the Pfeiffer Center and had our

evaluation in

> May. Aidan's tests showed a copper/zinc imbalance, zinc

deficiency

> and undermethylation. She has more mercury and some other

toxic

> metals than advisable, but not astronomical levels. Her gut

> dysbiosis is still severe, with yeast at 4+ and B. cerius (sounds

> like a joke, but it's not).

Did you figure this out with OAT? We are about to do that along

with the fasting plasma amino acid analysis.

They recommended a new regimen, which

> we took to the nutritionist and had compounded. We went

totally

> GFCF (we just needed to eliminate oatmeal...otherwise we'd

been

> doing it for two years at least).

>

> We started very slowly, but had immediate improvement just

from

> introduction of a new multi-vitamin and a calming vitamin,

> containing GABA, 5-HTP and Inositol. Aidan became a calmer,

happier

> little girl who could work through difficulties, could participate

> in a playgroup with other children. Her reactions were less

extreme

> and were over within five minutes!!!!!!

>

> We introduced culturelle as the new probiotic. She had the

age-old

> irritated red ring around her anus, but this time without the

> accompanying wild and angry behavior. The reaction cleared

up in

> one day, so we pressed on. Then we introduced the new B

vitamins

> (including b-12, no folic acid, and TMG). Her appetite ceased.

I

> was frantic, because we'd enrolled her in a wonderful private

> kindergarten and we needed to have her eat breakfast and be

ready to

> interact with others by 8AM and she wasn't getting hungry until

> after 2 in the afternoon! Eventually we had to back off

completely,

> stopping all probiotics, anti-fungal/biotics and vitamins for a

few

> days to give her gut/system a rest. We managed to get some

of her

> appetite back (but it has never returned fully). She's back on

the

> multi-vitamin, calming and night-time cal/mag/selenium/E. We

give

> her extra inositol at snack-time, and this seems to help her get

> through the morning with minimal panicking.

I started inositol about a week ago--1 gram in the morning--how

much have you been giving.

>

> I'm struggling with the gut issues right now. Since the end of

> August, we've tried to reintroduce the culturelle, but this

resulted

> in irritability and aggression, so that was scrapped in order to

> allow her to start school without trauma. We started

ProbioGold

> last weekend (just the tiniest smidge from an opened capsule)

and

> saw slightly increased irritability, but decided to continue. Last

> Friday, she asked us not to give it to her, saying, " it makes me

> feel mean. " Her teacher is not terrifically understanding of the

> mood swings (I do understand how seeing better behavior has

a

> tendency to raise one's expectations), and neither of us want to

set

> her up as the kid the teacher wishes wasn't in the class. So,

we

> stopped it as well.

>

> I'm worried about what will happen in her gut if we just stop

trying

> the probiotic/anti-fungal route for now. The die-off is really

> difficult to deal with, but I worry what's brewing in there and

what

> its effect will be if we leave it alone. The dev. ped. said we can

> at least have some more biotin added to vitamins to prevent

yeasts

> from changing to the form that hurts the gut lining.

>

> Are there other probiotics that may be worth trying? Is it just a

> matter of weathering the die-off " storms " until her gut clears

> enough of it? What are the risks of continuing on the probiotics

> when die-off is happening? We use alka seltzer gold to reduce

the

> reaction, with some success. Are there any other ideas?

We've got

> reduced glutathione and methyl-b12 skin creams yet to try, but

> haven't while this other issue remains unresolved.

How is the gut now?

>

> My daughter cannot tolerate me writing this any longer. I am

very

> grateful to anyone who would read this long post and respond

if you

> have any suggestions. Thank you again.

Lucy is developing obsessions with red objects--for three weeks

has been carrying a red block around-everywhere.

She also repeats herself (worse with certain foods we think).

I was so relieved to read about someone like Lucy and hope

things continue to improve for you. Look forward to hearing from

you.

in Bethesda, MD

>

> Sincerely,

>

> Carla Hancock

[Guest guest]

Many 'theories' abound..a lot have had success with starting off at 1.5mg

for the first two weeks to

a month, and then upping it to 3.0mg for a month, and eventually 4.5mg...and

if the 4.5mg is too

much for you..3.0mg is what is used by a lot of the MS'ers and it works for

them.

I'm sure someone will chime in with more information for you. Glad to have

you here!

Cap'n Caveman...zzzzzz

[low dose naltrexone] Introduction and questions

> Hello,

>

> I just joined the group today. I have Crohn's Disease of the terminal

> ileum.

[Guest guest]

So would it be best to obtain a new prescription for, say, 1.5mg 1-2x/day and

that way I can

more slowly build up?

[Guest guest]

The idea is to take it after 9pm, before bedtime. I got a 1.5 script, that way I had the flexibility to take 1.5, 3, or even 4.5. Lots more filler, but the script is almost gone, and I dont think the filler amount affected me one way or the other. The optimum dose is 4.5, but many are doing 3mg with good results.>> So would it be best to obtain a new prescription for, say, 1.5mg 1-2x/day and that way I can > more slowly build up?>

[Guest guest]

Hi

I get insomnia a bit from the LDN and I think if I wasn't on a sleeping pill I

would be in

trouble. I, took suffered from insomnia at one time - really bad, so bad in fact

that a

doctor finally prescribed Ativan (alias Lorazepam) It lowers anxiety and relaxes

me at

night. I only take it before bedtime. I think the Ativan takes care of any of

the sleep

problems I might have with the LDN and I think it is worth it because I believe

my MS

symptoms have stopped progressing. Still have problems with the brain damage

already

done but nothing new seems to be happening.

So, yes, I agree, getting something to help you sleep through the LDN activity

at night that

keeps us from sleeping may be worth it in order to reap the benefits of the LDN.

Ahhh....crazy world!

Alice

>

> Hello,

>

> I just joined the group today. I have Crohn's Disease of the terminal ileum.

>

> I learned about LDN from a Crohn's patient on another forum who has had great

success

> with it. I've listened to the audio tape of Dr. 's presentation, and

read a lot at

> www.ldninfo.org.

>

> My doctor is very open-minded, and he is willing to prescribe LDN. He started

me with

> 4.5mg, as that was the dosage used in the study for Crohn's. I took it for

two nights but

> had to stop because I literally got almost no sleep at all during that time.

I should

> mention that I've had a lot of trouble sleeping due to pain and inflammation

for several

> years now - so I cannot blame the LDN entirely. However, it seems that

anything that

> *might* cause insomnia as a side effect does exactly that for me.

>

> I emailed Dr. about this and she replied that other studies have shown

interactions

> with opioids and antagonists with TNF-alpha, Gamma interferon, interleukins

and other

> cytokines and that is perhaps why subjects who took it in the A.M. also

responded.

>

> I thought of taking the dose in the morning instead, as some of the study

participants

> did... especially because they still experienced improvement or remission.

But then I

> heard about Dr. Mir's study in Europe that demonstrated poor results where the

patients

> took LDN in the morning.

>

> So now I'm very confused! Should I go down to a lower dose (3mg) and still

take it

before

> bed? Should I take the 4.5mg dose in the morning? Is it contraindicated to

take a

> sleeping pill like Lunesta along with LDN before bed? I generally try to

avoid meds if

> possible, but I've learned over time that the consequences of being awake all

night

> because of pain and inflammation are far greater than the side effects of

Lunesta.

>

> Thank you for your help,

> Chris

>

[Guest guest]

Alice,

I suppose it's a question of " lesser of evils " . My hope is that LDN will help

me put Crohn's

into remission. Since Crohn's is what is most certainly causing my sleep

problems,

perhaps then I wouldn't need a sleeping pill. That's the plan, at least.

Thanks for your comment,

Chris

> Hi

> I get insomnia a bit from the LDN and I think if I wasn't on a sleeping pill I

would be in

> trouble. I, took suffered from insomnia at one time - really bad, so bad in

fact that a

> doctor finally prescribed Ativan (alias Lorazepam) It lowers anxiety and

relaxes me at

> night. I only take it before bedtime. I think the Ativan takes care of any of

the sleep

> problems I might have with the LDN and I think it is worth it because I

believe my MS

> symptoms have stopped progressing. Still have problems with the brain damage

already

> done but nothing new seems to be happening.

>

> So, yes, I agree, getting something to help you sleep through the LDN activity

at night

that

> keeps us from sleeping may be worth it in order to reap the benefits of the

LDN.

>

>

> Ahhh....crazy world!

>

> Alice

>

[Guest guest]

Hi ! And welcome to our group. I think my school district is one of the best in the country for Asperger's kids. The district has Asperger's only classes (if you want to use them for your dx'd child). A very good Autism team who will assess your child & assign all the related OT & ST you need. We're in Houston in Spring Branch School district. I'll send you links to MLS houses for sale......buy one & let's be neighbors!!!! Really, it's a good place to be & we're thrilled with the services they offer. Liz <mom2mia@...> wrote: Hi everyone! I wanted to introduce myself. I adopted my daughter from China 8 years ago and its been a long road of discovery and many dx's and lots of therapies and fights with unresponsive school systems. This week I brought my daughter to the Amen Clinic for the SPECT brain scans and finally got a dx that makes sense!! Asperger's! The other good news was that they were able to see that all the therapies I've done with her have helped her -- her brain scans shows areas of compensation for the areas where there were problems. That was so validating because as many of you have probably experienced -- I haven't received alot of support in my efforts from professionals and school spec ed staff. But I persevered and she has steadily gotten "better".My question is about schooling. I currently have her in private

school for language based learning disabilies and its been like a miracle! Last year in 6th grade she finally learned to read and now in 7th grade, she is reading at the 6th grade level. She is gifted in math however, she is getting A's in an advanced 9th grade math class where she is the only 7th grader and only girl! The problem is that they have gone way up in tuition and way down on my financial aid. I can't see how I can send her next year. Is there anywhere in the country that has a good public school system that can help my daughter? She has dyslexia and her expressive language skills and phoenemic awareness are weak. She needs multi-sensory instruction as she is a visual and kinesthetic learner -- not a hearing learner. Is there a list anywhere that would help me discover school districts that have "good" spec ed resources for my daughter? Many years ago I found one and remember that the Evergreen district in

Vancouver WA was rated at the top but I can't find this list again.I currently live in California but am willing to move anywhere especially since the cost of living would be better anywhere else as well. I'm hoping that now that we know she has Asperger's -- that will help towards getting her the help she needs. Have others found that to be the case?Thanks to everyone!

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Autos.

[Guest guest]

Hi everyone.

I have been reading posts daily for a long time. My name is Lori. I am

34 yrs olds with CMT. I have already had a total hip replacement when

I was 27 yrs old. I have also had the hammer toe surgery on one foot

which I do not recommend to anyone. I am now 20 weeks pregnant with

twins. I was told I also have scoliosis.. I have the drop foot but

also have flat feet that turn in bad. I get blisters in my arches. I

seem to have all the symptoms they say are rare but could happen. Has

anyone been pregnant with twins.. How did the CMT symptoms feel after?

My father has CMT and my brother too. I am in pain all the time in some

part or another. I am starting to think about trying for disability.

Do you think I will have trouble getting it? I live in Southwest

Florida.. Thanks everyone for your help.

[Guest guest]

Hi Lori,

 

Welcome to the group! 

 

I'm 45 yrs old with CMT1A.  I have many of the same symptoms as you do.  I had

hip replacement (at 38 yrs), hammer toe surgeries on both feet (at 40 yrs),

scoliosis (teenage bracing), and pain all the time.  I'm a mom of just one

child, at the age of 19.  No change in my CMT symptoms as a result of pregnancy,

but your situation is quite different in that you've already had your hip

replaced and you're having twins!  Wow!  Hopefully, you have a good team of

doctors (OB, neuro, and ortho) caring for you.

 

I wish you the best.  That's very exciting!

 

   

[Guest guest]

Hi Lori and welcome.

I am 34 myself and know the struggles of the disease.  I wish you well with the

birth of your twins what a great gift!  I think you will like this forum much

it's great information and everyone here is very nice. 

Andy 

[Guest guest]

Hi Lori,

Congratulations on the babies!