Anti-inflammatory (Pentasa) - how do I know if it's working?

[Guest guest]

My son has been taking Pentas (the compounded version, no illegals) for

about 60 days. I can't tell if it's working, and we need to decide

whether to continue it or stop it or try something else. My son's DAN

is not very experienced with this drug, so she can't guide us.

The only change I've noticed since starting Pentasa is that he started

having many more stools per day since he started this med. He went from

having 1 soft, mushy stool daily to having 4 or 5 stools every day.

Most of his stools are small, firm pellets, and once or twice a day

he'll have 1 or 2 large, soft, mushy stools.

He has been on SCD for abut 3 1/2 months. About three weeks into SCD

his stools became undigested (we never saw this before), and his old

reflux came back. He's also on an antifungal and occasionally uses

Zantac (compounded) for reflux (when the pain is too bad for him to

sleep). We've tried enzymes but haven't found one yet that has any

effect as far as making his stools more digested. He only eats a few

meats and vegetables due to severe allergies (due to leaky gut). No

dairy, eggs, nuts, fruit, honey, etc.

The doctor does not know what to advise. She suggests stopping the

Pentasa to see if we observe any changes when we take him off it. But

it feels like she's grasping at straws.

Any advice? Should we give the Pentasa more time? Stop it? Try

something else?

Thanks,

Suzanne

Tom, 3.5, ASD, SCD 106 days

[Guest guest]

Hi we it for a year.

dr. Buie ants to do the endoscopy again and see. I guess we do ot

know either but it is a immuno modulator fot the Imune system.

I ould love to know if theis an answer.

imone.

>

> My son has been taking Pentas (the compounded version, no

illegals) for

> about 60 days. I can't tell if it's working, and we need to decide

> whether to continue it or stop it or try something else. My son's

DAN

> is not very experienced with this drug, so she can't guide us.

>

> The only change I've noticed since starting Pentasa is that he

started

> having many more stools per day since he started this med. He went

from

> having 1 soft, mushy stool daily to having 4 or 5 stools every

day.

>

> Most of his stools are small, firm pellets, and once or twice a

day

> he'll have 1 or 2 large, soft, mushy stools.

>

> He has been on SCD for abut 3 1/2 months. About three weeks into

SCD

> his stools became undigested (we never saw this before), and his

old

> reflux came back. He's also on an antifungal and occasionally uses

> Zantac (compounded) for reflux (when the pain is too bad for him

to

> sleep). We've tried enzymes but haven't found one yet that has any

> effect as far as making his stools more digested. He only eats a

few

> meats and vegetables due to severe allergies (due to leaky gut).

No

> dairy, eggs, nuts, fruit, honey, etc.

>

> The doctor does not know what to advise. She suggests stopping the

> Pentasa to see if we observe any changes when we take him off it.

But

> it feels like she's grasping at straws.

>

> Any advice? Should we give the Pentasa more time? Stop it? Try

> something else?

>

> Thanks,

> Suzanne

> Tom, 3.5, ASD, SCD 106 days

>

[Guest guest]

Suzanne,

How long has Tom been on enzymes, and what kind? Are there any other medicenes

or protocols your son is on...ie chelation and such. What other supplements?

What is the nature of Tom's allergies, you mentioned they are severe due to

leaky gut, are they true allergic responses?

Summer

Suzanne wrote:

My son has been taking Pentas (the compounded version, no illegals)

for

about 60 days. I can't tell if it's working, and we need to decide

whether to continue it or stop it or try something else. My son's DAN

is not very experienced with this drug, so she can't guide us.

The only change I've noticed since starting Pentasa is that he started

having many more stools per day since he started this med. He went from

having 1 soft, mushy stool daily to having 4 or 5 stools every day.

Most of his stools are small, firm pellets, and once or twice a day

he'll have 1 or 2 large, soft, mushy stools.

He has been on SCD for abut 3 1/2 months. About three weeks into SCD

his stools became undigested (we never saw this before), and his old

reflux came back. He's also on an antifungal and occasionally uses

Zantac (compounded) for reflux (when the pain is too bad for him to

sleep). We've tried enzymes but haven't found one yet that has any

effect as far as making his stools more digested. He only eats a few

meats and vegetables due to severe allergies (due to leaky gut). No

dairy, eggs, nuts, fruit, honey, etc.

The doctor does not know what to advise. She suggests stopping the

Pentasa to see if we observe any changes when we take him off it. But

it feels like she's grasping at straws.

Any advice? Should we give the Pentasa more time? Stop it? Try

something else?

Thanks,

Suzanne

Tom, 3.5, ASD, SCD 106 days

Summer's Family, SCD 08/04 http://health.groups.yahoo.com/group/openblooms/

__________________________________________________

[Guest guest]

Did you see any changes? What did Dr. Buie say to expcet to see if

it's working? Is it possible for it to work but the parents not to

see any changes?

> >

> > My son has been taking Pentas (the compounded version, no

> illegals) for

> > about 60 days. I can't tell if it's working, and we need to

decide

> > whether to continue it or stop it or try something else. My son's

> DAN

> > is not very experienced with this drug, so she can't guide us.

> >

> > The only change I've noticed since starting Pentasa is that he

> started

> > having many more stools per day since he started this med. He

went

> from

> > having 1 soft, mushy stool daily to having 4 or 5 stools every

> day.

> >

> > Most of his stools are small, firm pellets, and once or twice a

> day

> > he'll have 1 or 2 large, soft, mushy stools.

> >

> > He has been on SCD for abut 3 1/2 months. About three weeks into

> SCD

> > his stools became undigested (we never saw this before), and his

> old

> > reflux came back. He's also on an antifungal and occasionally

uses

> > Zantac (compounded) for reflux (when the pain is too bad for him

> to

> > sleep). We've tried enzymes but haven't found one yet that has

any

> > effect as far as making his stools more digested. He only eats a

> few

> > meats and vegetables due to severe allergies (due to leaky gut).

> No

> > dairy, eggs, nuts, fruit, honey, etc.

> >

> > The doctor does not know what to advise. She suggests stopping

the

> > Pentasa to see if we observe any changes when we take him off it.

> But

> > it feels like she's grasping at straws.

> >

> > Any advice? Should we give the Pentasa more time? Stop it? Try

> > something else?

> >

> > Thanks,

> > Suzanne

> > Tom, 3.5, ASD, SCD 106 days

> >

>

[Guest guest]

Thanks for asking, Summer!

FOr enzymes, I found a rotation of Lamb pancreas and Beef pancreas

from Allergy Research group. Since he's allergic to most fruits, the

fruit-based enzymes are out, and I've been advised to avoid

aspergillus-based enzymes (like Houston's), as they're liable to

trigger allergies. Animal-based enzymes are probably our safest bet.

These didn't seem to have any noticable effect, and we've gone all

the way up to and past the adult dose - no response positive or

negative.

The other things he takes are:

Ketoconazole (antifungal)

nasal methylcobalamine (B12)

TD-GSH

TD-zinc

New Beginnings Chelate-Mate (calcium-free mineral supplement)

L-GLutamine

TD-LDN (Low-dose Naltrexone, transdermal)

Probiotics (rotated Klaire bifidus and rhamnosus and yes,these are

illegal. He has a D-lactate condition and cannot take l. acidophilus.

I haven't been able to get good advice on what SCD-legal probiotics

to try in a case like this, so our DAN told us just to continue the

ones we've been using.)

We haven't attempted chelation yet, his gut's in too bad shape. We

plan to do a CDSA within the next few weeks to see if it's improved

since December's CDSA, but we've seen blood in his stool frequently,

as recently as last week.

His allergies are mostly IgE (eczema is his main reaction). When we

give him alergic foods on a sustained basis, he has GI reactions as

well. He tests positive on a standard allergy skin-prick test. IgE

blood tests are hit-or-miss in accuracy for him. He outgrows some

allergies after a period of avoidance (such as fruits), but when we

re-introduce the foods, he eventually develops a new reaction. We

attribute this to continued leaky gut.

His December CDSA showed elevated SIgA as well as elevated

lactoferrin (indicating intestinal inflammation), and fecal occult

blood. That's the test that made us decide to start SCD, but I can't

say we've seen a whole lot of improvement in his gut. His stools and

reflux are worse. He did make a lot of cognitive gains at first, as

he always does when we treat his yeast. However, we started new

antifungals at the same time we started SCD, so it's hard to tell

what helped. About 60% of the gains he's had have stuck, and each

time he starts a new antifungal (we rotate) his gains come back and

last a few weeks. On the whole, he's a much better kid, cognitively,

than pre-SCD, but not with his gut. And we know he could be doing

better than he is. His allergies have not improved at all.

Hope this gives you some clues - he is a tough kid to treat because

of the allergies.

Suzanne

> My son has been taking Pentas (the compounded version, no

illegals) for

> about 60 days. I can't tell if it's working, and we need to decide

> whether to continue it or stop it or try something else. My son's

DAN

> is not very experienced with this drug, so she can't guide us.

>

> The only change I've noticed since starting Pentasa is that he

started

> having many more stools per day since he started this med. He went

from

> having 1 soft, mushy stool daily to having 4 or 5 stools every day.

>

> Most of his stools are small, firm pellets, and once or twice a day

> he'll have 1 or 2 large, soft, mushy stools.

>

> He has been on SCD for abut 3 1/2 months. About three weeks into

SCD

> his stools became undigested (we never saw this before), and his

old

> reflux came back. He's also on an antifungal and occasionally uses

> Zantac (compounded) for reflux (when the pain is too bad for him to

> sleep). We've tried enzymes but haven't found one yet that has any

> effect as far as making his stools more digested. He only eats a

few

> meats and vegetables due to severe allergies (due to leaky gut). No

> dairy, eggs, nuts, fruit, honey, etc.

>

> The doctor does not know what to advise. She suggests stopping the

> Pentasa to see if we observe any changes when we take him off it.

But

> it feels like she's grasping at straws.

>

> Any advice? Should we give the Pentasa more time? Stop it? Try

> something else?

>

> Thanks,

> Suzanne

> Tom, 3.5, ASD, SCD 106 days

>

>

>

>

>

>

> Summer's Family, SCD 08/04

http://health.groups.yahoo.com/group/openblooms/

> __________________________________________________

>

[Guest guest]

Suzanne,

I will get back to you later, I am expecting a fellow SCDer from afar at my

house today.

I do want to mention, that it seems that Tom's doctors are taking a

symptomatic approach, constantly treating symptoms, not working on healing the

causes.

The diet that Tom is currently on is enough to cause digestive upset for

anyone, have you made any amendments to it recently? He is eating foods

according to a paper test, as opposed to what is easiest to digest for his

little body. The principle of SCD is to eat what is easiest to digest allowing

the gut some space to heal.

So, no, I don't believe very many cognitive gains have been made because of

Tom being on the foods he is eating now. Sooner or later, the foods he is eating

now will cause the same reaction as previous foods, so all that is being done is

tempoarily quieting reactions.

I would go with your gut instinct and not attempt chelation at all. It is best

to have symptoms under control for at least a year before going down that route

(which I don't advise anyway).

How long is/was Tom on enzymes and how were they administered, and were they

administered with every meal? What other testing (if any) has been done on Tom,

hair analysis and so forth?

Summer

Suzanne wrote:

Thanks for asking, Summer!

FOr enzymes, I found a rotation of Lamb pancreas and Beef pancreas

from Allergy Research group. Since he's allergic to most fruits, the

fruit-based enzymes are out, and I've been advised to avoid

aspergillus-based enzymes (like Houston's), as they're liable to

trigger allergies. Animal-based enzymes are probably our safest bet.

These didn't seem to have any noticable effect, and we've gone all

the way up to and past the adult dose - no response positive or

negative.

The other things he takes are:

Ketoconazole (antifungal)

nasal methylcobalamine (B12)

TD-GSH

TD-zinc

New Beginnings Chelate-Mate (calcium-free mineral supplement)

L-GLutamine

TD-LDN (Low-dose Naltrexone, transdermal)

Probiotics (rotated Klaire bifidus and rhamnosus and yes,these are

illegal. He has a D-lactate condition and cannot take l. acidophilus.

I haven't been able to get good advice on what SCD-legal probiotics

to try in a case like this, so our DAN told us just to continue the

ones we've been using.)

We haven't attempted chelation yet, his gut's in too bad shape. We

plan to do a CDSA within the next few weeks to see if it's improved

since December's CDSA, but we've seen blood in his stool frequently,

as recently as last week.

His allergies are mostly IgE (eczema is his main reaction). When we

give him alergic foods on a sustained basis, he has GI reactions as

well. He tests positive on a standard allergy skin-prick test. IgE

blood tests are hit-or-miss in accuracy for him. He outgrows some

allergies after a period of avoidance (such as fruits), but when we

re-introduce the foods, he eventually develops a new reaction. We

attribute this to continued leaky gut.

His December CDSA showed elevated SIgA as well as elevated

lactoferrin (indicating intestinal inflammation), and fecal occult

blood. That's the test that made us decide to start SCD, but I can't

say we've seen a whole lot of improvement in his gut. His stools and

reflux are worse. He did make a lot of cognitive gains at first, as

he always does when we treat his yeast. However, we started new

antifungals at the same time we started SCD, so it's hard to tell

what helped. About 60% of the gains he's had have stuck, and each

time he starts a new antifungal (we rotate) his gains come back and

last a few weeks. On the whole, he's a much better kid, cognitively,

than pre-SCD, but not with his gut. And we know he could be doing

better than he is. His allergies have not improved at all.

Hope this gives you some clues - he is a tough kid to treat because

of the allergies.

Suzanne

> My son has been taking Pentas (the compounded version, no

illegals) for

> about 60 days. I can't tell if it's working, and we need to decide

> whether to continue it or stop it or try something else. My son's

DAN

> is not very experienced with this drug, so she can't guide us.

>

> The only change I've noticed since starting Pentasa is that he

started

> having many more stools per day since he started this med. He went

from

> having 1 soft, mushy stool daily to having 4 or 5 stools every day.

>

> Most of his stools are small, firm pellets, and once or twice a day

> he'll have 1 or 2 large, soft, mushy stools.

>

> He has been on SCD for abut 3 1/2 months. About three weeks into

SCD

> his stools became undigested (we never saw this before), and his

old

> reflux came back. He's also on an antifungal and occasionally uses

> Zantac (compounded) for reflux (when the pain is too bad for him to

> sleep). We've tried enzymes but haven't found one yet that has any

> effect as far as making his stools more digested. He only eats a

few

> meats and vegetables due to severe allergies (due to leaky gut). No

> dairy, eggs, nuts, fruit, honey, etc.

>

> The doctor does not know what to advise. She suggests stopping the

> Pentasa to see if we observe any changes when we take him off it.

But

> it feels like she's grasping at straws.

>

> Any advice? Should we give the Pentasa more time? Stop it? Try

> something else?

>

> Thanks,

> Suzanne

> Tom, 3.5, ASD, SCD 106 days

>

>

>

>

>

>

> Summer's Family, SCD 08/04

http://health.groups.yahoo.com/group/openblooms/

> __________________________________________________

>

[Guest guest]

Summer, thanks for your thoughts on this. We're working so hard to

help Tom, and it often seems like we're not making a lot of progress.

Our doctors aren't much help, other than treating symptoms, as you

saw. We're committed to the diet, since the alternative seems worse,

but we hoped to see more progress by now. The return of his reflux,

the start of undigested stools, and the continuing blood in his

stools are worrisome.

We actually diagnose Tom's food allergies using the gold standard for

allergy diagnosis, which is trial and observation with careful food

journaling. We have confirmed most of the diagnoses made this way

with a skin-prick test (which has turned out to be accurate), but in

day-to-day practice, we rely on the trial and observation method.

We've been doing this since he was 2 months old, and are very good at

it. It has been very reliable for us. As you know, this method works

for IgE allergies as well as for intolerances, so we capture all his

reactions, no matter whether they're IgE or IgG - and the treatment,

avoidance, is the same. His atopic responses happen to indicate that

these really are true IgE allergies.

As far as Tom's diet, we only feed him the foods he can tolerate or

has just mild reactions to. There are about 14 foods total that fall

into this category. There are only about 8 foods he's not allergic to

at all, and another 7 or 8 that he has only mild reactions to, and we

include these in his diet for nutritional reasons. However, he always

has some amount of visible allergic reaction (eczema) as a result of

us feeding him allergic foods, and I suspect the foods irritate his

gut as well. But I would be nervous about feeding him fewer foods

than we already are. He's already showing some physical signs of

nutritional deficiencies (and of course cognitive signs as part of

his ASD).

All other foods cause more severe allergic reactions, so we really

can't add those foods back in. He doesn't outgrow allergies easily or

fast, and whenever we re-introduce a food that he was previously

allergic to, he eventually develops a new reaction. We do rotate

foods (2 days on, 5 days off) - here's an example:

Day 1: buffalo, spinach, brussel sprouts, canola oil

Day 2: lamb, butternut squash, asparagus, palm oil

Day 3: elk, broccoli, celeriac, safflower oil

The allergist has advised us to not introduce eggs or nuts into his

diet (he's never had them in his life) until his overall allergic

response improves, since he is such an allergic child. It is almost

certain that he would react to these foods. We have recently

experimented succesfully with adding salmon (on paper, he's allergic

(skin prick test) to all fish, and we've confirmed this with trial

and observation with several fish (he's got a class-4 allergy to cod,

for instance, and reacts to cod liver oil even when it's administered

topically)). But in the past 3 months we've started feeding him

salmon one meal per week, and so far he does not seem to be reacting.

That's about as far as I'm willing to push it on new foods, for now.

We've pushed too fast in the past adding new foods, and that's how we

ended up with a child who is allergic to almost everything.

On the enzymes, we are religious about giving them at every meal. For

home meals we give him a capsule 30-60 minutes before the meal, and

at school we sprinkle the enzyme in the food bowl we pack for him. We

have really only missed giving him enzymes for about 6 meals in the

month we've been using them. We're very disciplined about foods,

medicines, and supplements.

Tom hasn't had any digestive testing (urine, fecal) since the

December stool analysis. I will be giving him another CDSA in the

next few weeks.

I so appreciate your advice Summer, thank you!

Suzanne

>

> Suzanne,

>

> I will get back to you later, I am expecting a fellow SCDer from

afar at my house today.

>

> I do want to mention, that it seems that Tom's doctors are taking

a symptomatic approach, constantly treating symptoms, not working on

healing the causes.

>

> The diet that Tom is currently on is enough to cause digestive

upset for anyone, have you made any amendments to it recently? He is

eating foods according to a paper test, as opposed to what is easiest

to digest for his little body. The principle of SCD is to eat what is

easiest to digest allowing the gut some space to heal.

>

> So, no, I don't believe very many cognitive gains have been made

because of Tom being on the foods he is eating now. Sooner or later,

the foods he is eating now will cause the same reaction as previous

foods, so all that is being done is tempoarily quieting reactions.

>

> I would go with your gut instinct and not attempt chelation at

all. It is best to have symptoms under control for at least a year

before going down that route (which I don't advise anyway).

>

> How long is/was Tom on enzymes and how were they administered,

and were they administered with every meal? What other testing (if

any) has been done on Tom, hair analysis and so forth?

>

> Summer

[Guest guest]

>

> Day 1: buffalo, spinach, brussel sprouts, canola oil

> Day 2: lamb, butternut squash, asparagus, palm oil

> Day 3: elk, broccoli, celeriac, safflower oil

Suzanne,

Is he allergic to honey?

He is really getting virtually no carbs at all.

It seems to me that this diet would lead him to eat way too much protein.

Also, have you tried Gastrocrom? Perhaps giving it before each meal

would allow you to expand his food choices WITHOUT him becoming

allergic to the new foods.

Jody

mom to -7 and -9

Malabsorption/GI Issues

SCD 1/03

[Guest guest]

Suzanne,

I have two recommendations.

The celeriac is legal but the BTVC website warns: " However, you

should go slow and be careful. It is very fibrous, even if it

doesn't seem so when you steam it and mash it. "

This might be the food that is stalling your progress. It is too

advanced for Tom right now. Remove it,please.

I know that your son has milk allergies but many ASD children with

extreme allergies to milk can tolerate the goat yogurt. The goat

yogurt brings dramatic improvement in GI function. Start out with

1/8 of a teaspoon and expect some die off reaction.

Good luck!

Mimi

> >

> > Suzanne,

> >

> > I will get back to you later, I am expecting a fellow SCDer

from

> afar at my house today.

> >

> > I do want to mention, that it seems that Tom's doctors are

taking

> a symptomatic approach, constantly treating symptoms, not working

on

> healing the causes.

> >

> > The diet that Tom is currently on is enough to cause digestive

> upset for anyone, have you made any amendments to it recently? He

is

> eating foods according to a paper test, as opposed to what is

easiest

> to digest for his little body. The principle of SCD is to eat what

is

> easiest to digest allowing the gut some space to heal.

> >

> > So, no, I don't believe very many cognitive gains have been

made

> because of Tom being on the foods he is eating now. Sooner or

later,

> the foods he is eating now will cause the same reaction as

previous

> foods, so all that is being done is tempoarily quieting reactions.

> >

> > I would go with your gut instinct and not attempt chelation at

> all. It is best to have symptoms under control for at least a year

> before going down that route (which I don't advise anyway).

> >

> > How long is/was Tom on enzymes and how were they administered,

> and were they administered with every meal? What other testing (if

> any) has been done on Tom, hair analysis and so forth?

> >

> > Summer

>

[Guest guest]

His yeast is very sensitive to sugars - he doesn't tolerate any

fruits at all, so we have held off on honey. If we did give him

honey, we could only do it 2 days a week, or he would be likely to

develop an allergy.

His diet is about 3/4 vegetables. He must eat a LARGE quantity of

vegetables to get enough calories. He eats about 1 lb of meat a day.

We have an appt. with our allergist in July to request a gastrocrom

prescription. Gastrocrom only works for a small percentage of

people, so I'm not getting my hopes up, but we have to at least try

it. We have a nutritionist appt. in July also, to evaluate his

nutritional intake and at least learn what his diet lacks,

especially in vitamins. We know he's low in carbs.

In the last 2 weeks he has lost about 4 lbs, taking him back 19

months in weight, to where he was at age 2 (he's 3.7 now). These 4

lbs were hard-won, and two of them came since we started SCD. I'm

really worried that he lost them, and I don't have any explanation.

He's not eating less.

Suzanne

>

>

> >

> > Day 1: buffalo, spinach, brussel sprouts, canola oil

> > Day 2: lamb, butternut squash, asparagus, palm oil

> > Day 3: elk, broccoli, celeriac, safflower oil

>

>

> Suzanne,

>

> Is he allergic to honey?

> He is really getting virtually no carbs at all.

> It seems to me that this diet would lead him to eat way too much

protein.

>

> Also, have you tried Gastrocrom? Perhaps giving it before each

meal

> would allow you to expand his food choices WITHOUT him becoming

> allergic to the new foods.

>

>

> Jody

> mom to -7 and -9

> Malabsorption/GI Issues

> SCD 1/03

>

[Guest guest]

If I remove celeriac, I have nothing to replace it with - he'd have

to live on just elk and broccoli for 2 days. Right now he at least

has 3 foods at a time, I am nervous taking him down to just 2 foods.

What do you think?

With IgE allergies, 95% of kids who react to cows milk also react to

goat milk, and his reaction to all high-protein foods (except meat)

is usually allergic, so the odds aren't in our favor.

So, as you can see, our options are very limited. I'm listening

though - any other suggestions?

Suzanne

> > >

> > > Suzanne,

> > >

> > > I will get back to you later, I am expecting a fellow SCDer

> from

> > afar at my house today.

> > >

> > > I do want to mention, that it seems that Tom's doctors are

> taking

> > a symptomatic approach, constantly treating symptoms, not

working

> on

> > healing the causes.

> > >

> > > The diet that Tom is currently on is enough to cause

digestive

> > upset for anyone, have you made any amendments to it recently?

He

> is

> > eating foods according to a paper test, as opposed to what is

> easiest

> > to digest for his little body. The principle of SCD is to eat

what

> is

> > easiest to digest allowing the gut some space to heal.

> > >

> > > So, no, I don't believe very many cognitive gains have been

> made

> > because of Tom being on the foods he is eating now. Sooner or

> later,

> > the foods he is eating now will cause the same reaction as

> previous

> > foods, so all that is being done is tempoarily quieting

reactions.

> > >

> > > I would go with your gut instinct and not attempt chelation

at

> > all. It is best to have symptoms under control for at least a

year

> > before going down that route (which I don't advise anyway).

> > >

> > > How long is/was Tom on enzymes and how were they

administered,

> > and were they administered with every meal? What other testing

(if

> > any) has been done on Tom, hair analysis and so forth?

> > >

> > > Summer

> >

>

[Guest guest]

I think that it is more important to avoid foods that are not

digested than to do rotation. Many parents find that they do not

need to rotate foods if they do SCD. If you continue using celeriac

than you cannot describe your son's diet as being SCD. SCD means

only using foods that the patient can digest. Of course you are free

to feed your child whatever you want but please be careful with the

terminology.

Have you considered avocadoes or olives(from health food stores

without any additives). I use Santa Barbara plain olives. Other list

members might know of other brands. How about exotic veggies like

aragula or eggplant? My older son also was reactive to most foods

and I understand your worries;I did not know about SCD when we did

rotation and elimination with him....I was in constant fear that I

would end up without any foods to feed him...

You wrote:

> With IgE allergies, 95% of kids who react to cows milk also react

to

> goat milk,

I am recommending goat yogurt not goat milk. There is a major

difference between the two. Yogurt is better tolerated. Many people

who do not tolerate cow milk do tolerate commercial cow yogurt. If

we ferment the yogurt for 24 hours we make it even more tolerable

and if we use goat milk than we really increase our odds. You may

search on the list for my posts about yogurt or wait till I write

more about this immportant topic.

I will post an article about how yogurt reduces allergies in my next

post.

I really feel for you and wish you the best,

Mimi

> If I remove celeriac, I have nothing to replace it with - he'd

have

> to live on just elk and broccoli for 2 days. Right now he at least

> has 3 foods at a time, I am nervous taking him down to just 2

foods.

> What do you think?

[Guest guest]

Suzanne,

Personal observation is the gold standard, good for you!

I have a SCD guest in town this week, won't be on the puter much, but I am

putting my toe out into the water, do a bit of research.

I have been following what you are doing for awhile, it is not working. I have

been hesitant to say much on the situation, besides bone marrow broth, because I

do not have an alternative worked out for you yet.

I got this feeling from the start, Tom's doctors are not going all out getting

this figured out, I don't know what's holding them back.

IgE is a problem, but why it is a problem is much more relevant than the

current numbers to things.

The diet Tom is on now, he will eventually develop IgE to all these foods too,

and this diet simply will not heal him, most of those foods are too difficult

for his intestines to digest, as you of course know already.

I want to put it out there, while I am not recommending you stop any of Tom's

medicenes, and Elaine says to stay with medicenes until healed, the medicenes

you mention are very difficult for a little sick body to handle, there are also

alternatives, those are not the only things you can do. But I am getting ahead

of myself, just wanted to dangle that idea out there.

Going from medicene to medicene can continue this cycle. It is not targeted

medicene either, just stuff the doctors are pulling out of their hats...

I think we need to think about what it takes to heal Tom's intestines, which

will go a long way to healing his cognitive abilities, instead of being scared

of what will trigger the body. There is a way around this sticky point.

I do agree with the nutritionist, nuts need to be left out of the equation for

Tom, at this time.

Summer

Suzanne wrote:

Summer, thanks for your thoughts on this. We're working so hard to

help Tom, and it often seems like we're not making a lot of progress.

Our doctors aren't much help, other than treating symptoms, as you

saw. We're committed to the diet, since the alternative seems worse,

but we hoped to see more progress by now. The return of his reflux,

the start of undigested stools, and the continuing blood in his

stools are worrisome.

We actually diagnose Tom's food allergies using the gold standard for

allergy diagnosis, which is trial and observation with careful food

journaling. We have confirmed most of the diagnoses made this way

with a skin-prick test (which has turned out to be accurate), but in

day-to-day practice, we rely on the trial and observation method.

We've been doing this since he was 2 months old, and are very good at

it. It has been very reliable for us. As you know, this method works

for IgE allergies as well as for intolerances, so we capture all his

reactions, no matter whether they're IgE or IgG - and the treatment,

avoidance, is the same. His atopic responses happen to indicate that

these really are true IgE allergies.

As far as Tom's diet, we only feed him the foods he can tolerate or

has just mild reactions to. There are about 14 foods total that fall

into this category. There are only about 8 foods he's not allergic to

at all, and another 7 or 8 that he has only mild reactions to, and we

include these in his diet for nutritional reasons. However, he always

has some amount of visible allergic reaction (eczema) as a result of

us feeding him allergic foods, and I suspect the foods irritate his

gut as well. But I would be nervous about feeding him fewer foods

than we already are. He's already showing some physical signs of

nutritional deficiencies (and of course cognitive signs as part of

his ASD).

All other foods cause more severe allergic reactions, so we really

can't add those foods back in. He doesn't outgrow allergies easily or

fast, and whenever we re-introduce a food that he was previously

allergic to, he eventually develops a new reaction. We do rotate

foods (2 days on, 5 days off) - here's an example:

Day 1: buffalo, spinach, brussel sprouts, canola oil

Day 2: lamb, butternut squash, asparagus, palm oil

Day 3: elk, broccoli, celeriac, safflower oil

The allergist has advised us to not introduce eggs or nuts into his

diet (he's never had them in his life) until his overall allergic

response improves, since he is such an allergic child. It is almost

certain that he would react to these foods. We have recently

experimented succesfully with adding salmon (on paper, he's allergic

(skin prick test) to all fish, and we've confirmed this with trial

and observation with several fish (he's got a class-4 allergy to cod,

for instance, and reacts to cod liver oil even when it's administered

topically)). But in the past 3 months we've started feeding him

salmon one meal per week, and so far he does not seem to be reacting.

That's about as far as I'm willing to push it on new foods, for now.

We've pushed too fast in the past adding new foods, and that's how we

ended up with a child who is allergic to almost everything.

On the enzymes, we are religious about giving them at every meal. For

home meals we give him a capsule 30-60 minutes before the meal, and

at school we sprinkle the enzyme in the food bowl we pack for him. We

have really only missed giving him enzymes for about 6 meals in the

month we've been using them. We're very disciplined about foods,

medicines, and supplements.

Tom hasn't had any digestive testing (urine, fecal) since the

December stool analysis. I will be giving him another CDSA in the

next few weeks.

I so appreciate your advice Summer, thank you!

Suzanne

>

> Suzanne,

>

> I will get back to you later, I am expecting a fellow SCDer from

afar at my house today.

>

> I do want to mention, that it seems that Tom's doctors are taking

a symptomatic approach, constantly treating symptoms, not working on

healing the causes.

>

> The diet that Tom is currently on is enough to cause digestive

upset for anyone, have you made any amendments to it recently? He is

eating foods according to a paper test, as opposed to what is easiest

to digest for his little body. The principle of SCD is to eat what is

easiest to digest allowing the gut some space to heal.

>

> So, no, I don't believe very many cognitive gains have been made

because of Tom being on the foods he is eating now. Sooner or later,

the foods he is eating now will cause the same reaction as previous

foods, so all that is being done is tempoarily quieting reactions.

>

> I would go with your gut instinct and not attempt chelation at

all. It is best to have symptoms under control for at least a year

before going down that route (which I don't advise anyway).

>

> How long is/was Tom on enzymes and how were they administered,

and were they administered with every meal? What other testing (if

any) has been done on Tom, hair analysis and so forth?

>

> Summer

Summer's Family, SCD 08/04 http://health.groups.yahoo.com/group/openblooms/

__________________________________________________

[Guest guest]

He's gotten older and gained weight though. So, it he's eating the exact same

amount as before, it may not be " enough " anymore. As they get older, they

get more agile and active and burn more calories. Also, more weight requires

more calories to maintain.

Have you had viral panels run? Has he been tested/treated for parasites?

What about looking into LDN to help boost his immune system?

Jody

mom to -7 and -9

Malabsorption/GI Issues

SCD 1/03

[Guest guest]

Mimi, appreciate your input, I still have a lot to learn about SCD

from experts like you. It's been really hard to execute this diet,

knowing we can't do it perfectly because of my son's severe

allergies. We have rigorously avoided poly-and disaccharides in his

diet, even though he does tolerate some of them allergenically (he

could eat turnips, buckwheat, or quinoa, for example). There are also

a few SCD legal foods he can tolerate (again, allergenically) that we

have not added because of digestibility: cabbage, rutabaga, onion. If

you feel that any of these would be a better substitute for celeriac,

I would be eager to try them.

However, I do know my child. Unless we rotate, he becomes allergic

to a food. That's how we ended up where we are - where he's allergic

to EVERY FOOD except this short list of 6 foods. Rotation is a MUST

for him - it's not optional.

Allergies (at least classic IgE allergies) are something that I know

a bit about, and I know my son. One fact of IgE allergies is that

they are not outgrown quickly. The body only stops making antibodies

to a recognized antigen after a fairly long period of complete

avoidance - usually several months to several years or more. But even

complete avoidance doesn't guarantee that the allergy will ever be

outgrown. Still, an individual has the best chance of outgrowing the

allergy by excercising complete avoidance of the food and all its

derivatives for a minimum of 6 months. Eggs, shellfish, and

especially tree-nuts and peanuts are the foods that are most commonly

never outgrown. That's why allergists and the medical community

recommend the complete avoidance of nuts by nursing mothers, babies

and toddlers until age 3, and to age 5 for children with allergic

tendencies (the presence of any of the atopic conditions - allergy,

eczema, or asthma). If a child develops allergy to these foods by

consuming them at too young an age when the gut is still highly

permeable, it may be a lifelong allergy.

So, this is one reason why we haven't tried adding in foods my son is

allergic to yet. Another reason is that his gut still appears to be

quite porous. During the intro diet (which for him was spinach,

zucchini, lamb, pearsauce and applesauce), we experimented with

adding cooked fruits - pearsauce and applesauce. He has been allergic

to these in the past, but we had avoided them for a long time (2

years). He no longer tested allergic to them, and I had begun to feed

him the occasional pear and apple with no evident reaction in the

months before we started SCD. On the intro diet, we gave him

pearsauce and applesauce for 3 days (rotated), and by the third day

he was an allergic mess, covered in eczema. He had re-sensitized to

them and was reacting. So we pulled those from his diet. My lesson

from that was that he does still retain the capacity to re-sensitize

to previously allergic foods, even if he has outgrown the antibody

production with avoidance. In short, those are my reasons for not

giving him food he's been allergic to in the past and for rotating.

> Have you considered avocadoes or olives(from health food stores

> without any additives). I use Santa Barbara plain olives.

He has allergies to avocadoes, olives, and eggplant. Been there, done

that, unfortunately. We used to use avocadoes heavily. What are the

nutritional qualities of arugula? Can it be cooked? I assume it's

eaten as a leafy green, similar to spinach? Can it be eaten in the

quantity of say, a pound a day? We especially need high-calorie

veggies. We have tried most exotic veggies already, except for a few

where we are uncertain about their saccharide status.

> I am recommending goat yogurt not goat milk. There is a major

> difference between the two. Yogurt is better tolerated.

An IgE allergy is a reaction to casein, which is the milk protein.

Casein is still present in yogurt. Only the lactose (milk sugar) is

reduced/eliminated through the culturing process. This would be a

sensible solution for someone with lactose intolerance, but not for a

true casein allergy.

I hope this explains the reasons that constrain our options in

feeding our son. I recognize that the SCD diet is guided by science,

and I trust there is a lot I have to learn about it. The allergy

world may be able to learn a few things from Elaine's research, and I

fervently wish to find clues that provide answers to my son's

problems. I'm especially interested to learn about the science behind

the idea that the SCD can cure allergies, not just the leaky gut

condition. I realize I have a lot to learn about the SCD, and I

appreciate your patience as I learn more.

Thanks again for your thoughts,

Suzanne

> > With IgE allergies, 95% of kids who react to cows milk also react

> to

> > goat milk,

>

> I am recommending goat yogurt not goat milk. There is a major

> difference between the two. Yogurt is better tolerated. Many

people

> who do not tolerate cow milk do tolerate commercial cow yogurt. If

> we ferment the yogurt for 24 hours we make it even more tolerable

> and if we use goat milk than we really increase our odds. You may

> search on the list for my posts about yogurt or wait till I write

> more about this immportant topic.

> I will post an article about how yogurt reduces allergies in my

next

> post.

>

> I really feel for you and wish you the best,

> Mimi

>

>

> > If I remove celeriac, I have nothing to replace it with - he'd

> have

> > to live on just elk and broccoli for 2 days. Right now he at

least

> > has 3 foods at a time, I am nervous taking him down to just 2

> foods.

> > What do you think?

>

[Guest guest]

Suzanne,

Have you considered EPD (enzyme potentiated desensitization) for him?

I think it may have a new name now, but I cannot think what it is. Perhaps

someone else can chime in.

It is different than traditional " allergy shots " .

In your son's case, I would definitely consider it.

What about NAET? I have read many parents saying that it made a huge

difference for their child. You have to find a good practitioner. Perhaps

someone has some leads on that for you.

Jody

mom to -7 and -9

Malabsorption/GI Issues

SCD 1/03

[Guest guest]

Summer,

I can't say how much I appreciate your thinking about Tom's problems.

I'm trying so hard, and feeling very alone in this. He is a tricky

kid, and a puzzle to figure out. You are right, his doctors aren't

going all out. I have known this for some time - and that's why I'm

learning all I can on my own. I don't understand the overactive

immune piece to his puzzle, and the doctors have been no help. All

they can advocate with his allergies is total avoidance, which is of

course correct, but it can't stop there. We see two of the leading

DAN doctors, and they are really out of ideas and are simply

administering the standard DAN gut-healing treatments: SCD,

antifungals, etc. It's not enough, and they don't know enough about

how the SCD works to guide us on things like choosing a safe,

effective SCD-legal probiotic for a child with a D-lactate condition.

We've consulted DAN nutritionists as well on this, with no help.

I have made a wonderful lamb bone broth for Tom, but have been unable

to find a good source of buffalo or elk bones for the other days in

his rotation. For awhile I was using duck bone broth 2 days a week,

but he started reacting to that so I had to stop (he's allergic to

all fowl now).

So far, the agressive rotation has preserved these few safe foods for

him to eat. It's the best way I know to avoid new allergies. There is

certianly a risk he'll eventually react, but we are doing the best we

know how, and crossing our fingers.

In addition to healing his leaky gut, I feel we also have to rein in

his overactive immune response. One of his DANs has suggested BayGam

as an immunomodulator. Dr. Boris also suggested Actos as a more

effective alternative to IVIG therapy. They are on our list of things

to try. But we also need to make better progress with healing his

leaky gut.

I am not wild about giving him tons of medications. Now that I've

learned Elaine didn't recommend antifungals, I am trying to think

about how to stop them. We've seen that each one loses effectiveness

over time. With all the undigested food in his gut, I'm afraid the

yeast will grow back if we we stop them, though. Any thoughts on this?

All your thoughts, and those of other listmates, are very much

appreciated. I hope you are enjoying your houseguest!

Suzanne

> >

> > Suzanne,

> >

> > I will get back to you later, I am expecting a fellow SCDer from

> afar at my house today.

> >

> > I do want to mention, that it seems that Tom's doctors are taking

> a symptomatic approach, constantly treating symptoms, not working

on

> healing the causes.

> >

> > The diet that Tom is currently on is enough to cause digestive

> upset for anyone, have you made any amendments to it recently? He

is

> eating foods according to a paper test, as opposed to what is

easiest

> to digest for his little body. The principle of SCD is to eat what

is

> easiest to digest allowing the gut some space to heal.

> >

> > So, no, I don't believe very many cognitive gains have been made

> because of Tom being on the foods he is eating now. Sooner or

later,

> the foods he is eating now will cause the same reaction as previous

> foods, so all that is being done is tempoarily quieting reactions.

> >

> > I would go with your gut instinct and not attempt chelation at

> all. It is best to have symptoms under control for at least a year

> before going down that route (which I don't advise anyway).

> >

> > How long is/was Tom on enzymes and how were they administered,

> and were they administered with every meal? What other testing (if

> any) has been done on Tom, hair analysis and so forth?

> >

> > Summer

>

>

>

>

>

>

> Summer's Family, SCD 08/04

http://health.groups.yahoo.com/group/openblooms/

> __________________________________________________

>

[Guest guest]

Hmm, that is a treatment I have not heard of. I've looked into NAET

and similar muscle-testing based treatments, and sublingual or

intramuscular desensitization therapies. We would like to try the

former, but the closest practitioner is 3 hours away and it requires

repeat visits. The latter is hugely expensive and would also require

frequent travel and costly lifetime maintenance. Both seem to have

mixed track records. All our money is going to private ABA school

(which we can't stop - our school district is HORRIBLE).

Can you send me some information on EPD? Hopefully it is not costly

or require travel to see a specialist. Travel and money have become

great obstacles for us now. I just started a new job (which we need

to pay for ABA) and I have very little vacation time. It's all I can

do to keep up with the cooking and driving 250 miles a day to get Tom

to therapy and my job (they're an hour apart). I may need to wait on

these for a better time. Life became more difficult when I started

the job last week. Hubby and I will be traveling for work a lot too.

I'm trying to do what I can in the time we have.

Suzanne

>

> Suzanne,

>

> Have you considered EPD (enzyme potentiated desensitization) for

him?

> I think it may have a new name now, but I cannot think what it is.

Perhaps

> someone else can chime in.

>

> It is different than traditional " allergy shots " .

>

> In your son's case, I would definitely consider it.

>

> What about NAET? I have read many parents saying that it made a

huge

> difference for their child. You have to find a good practitioner.

Perhaps

> someone has some leads on that for you.

>

> Jody

> mom to -7 and -9

> Malabsorption/GI Issues

> SCD 1/03

>

[Guest guest]

The weight loss was very sudden. We have been increasing his food

quantities naturally over time to accomodate his growth. He gained a

few pounds in the first couple of monhts on SCD, but then lost 4-5

lbs in the space of 2 weeks. That can't be explained by growth and

not eating enough - he was eating the same amounts he had been in the

weeks prior.

His viral panels have been pretty good (no notable viruses except

myelin basic protein, and it wasn't too high - don't have the numbers

with me). He never had the MMR. He's been allergic since birth. We

stopped vaxing at 9 months, but I got the flu shot in my 9th month of

pregnancy. He was tested for parasites in December, it was negative.

He has been on LDN since last summer.

Suzanne

>

> He's gotten older and gained weight though. So, it he's eating the

exact same

> amount as before, it may not be " enough " anymore. As they get

older, they

> get more agile and active and burn more calories. Also, more

weight requires

> more calories to maintain.

>

> Have you had viral panels run? Has he been tested/treated for

parasites?

>

> What about looking into LDN to help boost his immune system?

>

>

> Jody

> mom to -7 and -9

> Malabsorption/GI Issues

> SCD 1/03

>