Progress report and questions--long

[Guest guest]

Hello everyone,

Haven't written in awhile. In some ways things haven't been going well

for my son Ned (4 yo, asd, scd since Sept.). In the beginning we saw

amazing leaps of development, trophies almost immediately. We kept

trying legal things (and made some mistakes like pear juice and kosher

gelatin), and we added goat yogurt pretty early. The yogurt seemed to

help for awhile, but then his behavior deteriorated and we decided to

wait a little while with it. I think now that that was a mistake. When

we gave him the yogurt he alternated trophies and loose stools every

other day. But gradually his stools have gotten worse and worse since

then. And every new thing we try to feed him gives him diahrrea.

Pineapple juice, apple cider, carrots, spinach, knox gelatin with grape

juice, melon, are some of the things we've tried.

Here's his diet: about half a loaf of nut bread (pecan and walnut) every

day with honey on it, 1 banana, roast beef, hard boiled egg whites, and

now we've gone back to yogurt. We're up to 2 teaspoons every other day

with honey mixed in. That's it. It seems appallingly limited to me, but

he's incredibly picky because of sensory issues and I've tried giving

him ground meat in hamburger patties, little meatballs, etc. and he

won't eat it. He would eat lots of different kinds of fruit if he could,

but they all give him d, cooked or raw. I'm particularly worried about

him not getting vitamin c, but I haven't wanted to add supplements

because I believe they contributed to the gi problems he had before SCD.

We're still seeing reasonably good progress in lots of areas, but still

many causes of concern. He still clearly has yeast--the red ring on his

anus never goes away. He also has gotten that rash on his mouth since we

went back to the yogurt. (I did look this problem up in the archives. :

) No real answers there, though, just a general feeling that it will go

away). He has the perpetual dark smudges under his eyes, but not as bad

as many children I've seen, skin problems--dryness and eczema. His

stools are consistently brown now, thank goodness, and not liquid, but

never trophies anymore. Sometimes they smell foul, sometimes not so bad,

but never the normal smell I hope for.

One thing that was successful was putting chicken livers in his bread. I

hate the smell of them so much I somehow started forgetting to buy them

: ). But I'm going back to that tomorrow. Anyone have any other ideas?

Maybe the problem is what he is eating, rather than what he isn't? One

possible illegal we use is the spectrum palm oil shortening in the

bread. I've heard people mention it here, so I just assumed it was

legal, but I know now it may not be. Any thoughts about that?

Thanks so much,

Rosemary

Mom to Ned, 4yo, asd, scd 5 months

[Guest guest]

> Maybe the problem is what he is eating, rather than what he isn't?

Hi Rosemary,

Am I correct when I assume that you DO give yoghurt right now? Have

you considered leaving the yoghurt OUT for a while? Was your son

casein free previously?

Nut yoghurt would be a nice, safe and healthy substitute.

Marjan

mom to Nick, 7, scd since jan 18, 2003

[Guest guest]

> Nut yoghurt would be a nice, safe and healthy substitute.

....but don't get me wrong: if the child can tolerate goat's: go for

it! If not tolerated, nut yoghurt will also get the probiotics IN and

repopulate the gut after cleaning...

Marjan

[Guest guest]

Hi Marjan,

Yes, we are giving yogurt right now, but I don't think that's the

culprit because it hasn't changed his bms at all since we reintroduced

it. He has shown signs of die-off--some tiredness, red rash under his

lip (if that's die off) and some cognitive leaps that have been really

exciting.

I talked with my husband about doing nut yogurt and he dissuaded me

because, as he says, Ned is getting tons of nuts right now. We really

need to expand his diet.

But thank you for taking the time to write. If Ned were not already

eating so much nut bread, I would follow your suggestion.

Rosemary

Marjan wrote:

Hi Rosemary,

Am I correct when I assume that you DO give yoghurt right now? Have

you considered leaving the yoghurt OUT for a while? Was your son

casein free previously?

Nut yoghurt would be a nice, safe and healthy substitute.

Marjan

mom to Nick, 7, scd since jan 18, 2003

[Guest guest]

Rosemary,

I see you have gotten many responses, but I wanted to strongly

suggest going back to some sort of intro diet with your son. Even

if it's just some meat and veggies. My son is not a big meat eater,

but he is getting better thank goodness. He really likes mashed

butternut squash with some ground cooked chicken breast (or

sometimes I ground up some roast pork). He must have some aversion

to the texture of meat.

There were several times in the beginning when we had to go back to

a basic diet. This included very limited fruit and nut flours. My

son would eat eggs, chicken croquettes, zucchini, pearsauce (every

other day), carrot curls, and butternut squash. I'm not saying

these foods will work for your son, but I think you can see that it

was a very basic diet.

I also would hold off on the yogurt. Did you ever try the

acidophilus powder? Maybe after a week of a simple diet, you might

give that a try. Then after a few months, try the yogurt again.

You obviously were successful in the beginning, so I'm sure you can

come back from this. I think you just have to go really slow. You

know your son better than us, so do what you feel is best. I just

think that going back to the beginning would save time and

frustration (hopefully).

All my best,

Gia (mom to jack and joey, scd 7 mos)

> Hello everyone,

>

> Haven't written in awhile. In some ways things haven't been going

well

> for my son Ned (4 yo, asd, scd since Sept.). In the beginning we

saw

> amazing leaps of development, trophies almost immediately. We kept

> trying legal things (and made some mistakes like pear juice and

kosher

> gelatin), and we added goat yogurt pretty early. The yogurt seemed

to

> help for awhile, but then his behavior deteriorated and we decided

to

> wait a little while with it. I think now that that was a mistake.

When

> we gave him the yogurt he alternated trophies and loose stools

every

> other day. But gradually his stools have gotten worse and worse

since

> then. And every new thing we try to feed him gives him diahrrea.

> Pineapple juice, apple cider, carrots, spinach, knox gelatin with

grape

> juice, melon, are some of the things we've tried.

>

> Here's his diet: about half a loaf of nut bread (pecan and walnut)

every

> day with honey on it, 1 banana, roast beef, hard boiled egg

whites, and

> now we've gone back to yogurt. We're up to 2 teaspoons every other

day

> with honey mixed in. That's it. It seems appallingly limited to

me, but

> he's incredibly picky because of sensory issues and I've tried

giving

> him ground meat in hamburger patties, little meatballs, etc. and

he

> won't eat it. He would eat lots of different kinds of fruit if he

could,

> but they all give him d, cooked or raw. I'm particularly worried

about

> him not getting vitamin c, but I haven't wanted to add supplements

> because I believe they contributed to the gi problems he had

before SCD.

>

> We're still seeing reasonably good progress in lots of areas, but

still

> many causes of concern. He still clearly has yeast--the red ring

on his

> anus never goes away. He also has gotten that rash on his mouth

since we

> went back to the yogurt. (I did look this problem up in the

archives. :

> ) No real answers there, though, just a general feeling that it

will go

> away). He has the perpetual dark smudges under his eyes, but not

as bad

> as many children I've seen, skin problems--dryness and eczema. His

> stools are consistently brown now, thank goodness, and not liquid,

but

> never trophies anymore. Sometimes they smell foul, sometimes not

so bad,

> but never the normal smell I hope for.

>

> One thing that was successful was putting chicken livers in his

bread. I

> hate the smell of them so much I somehow started forgetting to buy

them

> : ). But I'm going back to that tomorrow. Anyone have any other

ideas?

> Maybe the problem is what he is eating, rather than what he isn't?

One

> possible illegal we use is the spectrum palm oil shortening in the

> bread. I've heard people mention it here, so I just assumed it was

> legal, but I know now it may not be. Any thoughts about that?

>

> Thanks so much,

> Rosemary

> Mom to Ned, 4yo, asd, scd 5 months