Re: Re: 3 months this weekend

[Guest guest]

, I just saw another note from you that your son has red ears/cheeks and so

might be having a phenolic reaction. Luke had that - went all through that, and

found he reacts to the phenols called " salicylates " - Kathy already sent you

great links on that. If phenols/salicylates are an issue (sounds like they are,

to me) than you will find medicines/supplements are ESPECIALLY difficult because

any trace of something could be there and you wouldn't notice it the first time

you gave it to your son, but over a couple of weeks it would build up and start

causing a lot of agitation, tantrums, stimminess, etc. Being gradual like that

makes it so hard to pinpoint, but in Luke's situation, those symptoms

disappeared within a couple days of removing the culprit.

Here's my theory for you - now granted, I am by no means a DAN doctor. But as I

see it, if Luke was getting all the supplements you list below, I don't know how

I'd EVER know what was causing a reaction in him, what was helping and what

wasn't, and what might be hurting the situation. So, with that said, I don't

know what to tell you to do on that except #1) check the illegal/legal list on

pecanbread and FOR SURE remove anything SCD illegal, #2) look over all he's

getting and see if you'd feel safe removing any for a while. If so, concentrate

on SCD and what Elaine recommends - maybe a legal multivitamin and the

probiotic, of course. Then see how he does. If you want to try the supplements

again, reintroduce one at a time and really see what happens. This way you are

more in control of what he is getting, rather than JUST following a DAN doctors

advice. All ASD kids may not need the same supplementation, and I know the

tests show some folks what their kids " need " but I have to say I'm still not

sure all the supplements are necessary. This diet is so healthy, and once the

kids start actually absorbing nutrients from what they eat because their guts

are better, they will get a lot of that straight from their food. At least that

is MY PERSONAL THEORY!!

Best of luck and certainly, welcome!!!!!!

in NC

Mom of Luke, age 5, Asperger's/low-salicylate;

, age 3; and , 21 mos

All SCD since 1/26/04

Re: 3 months this weekend

Wow! I am new to the list. Thank you for sharing your wonderful

story. I pray I get half the positive outcome you have.

CONGRATUALATIONS!! You got me thinking about my possible illegals.

Chicken for one. We usually buy Tyson chicken. Is that OK?? Also, you

mentioned few supplements. We purchased only SCD permissable

supplements from Kirkman (not the ones Kirkman says is ok, but the

ones the SCD list says is OK!), but my son is taking multiple

supplements. (non-Rx) He is taking Calcium w/Vitamin D BioMax

Capsules, Cod Liver Oil liquid unflavored, CoQ10 Capsules, Glycine, L-

Glutamine, Molybdenum, Selenium, Super Nu Thera Hypoallergenic

capsules, Taurine, Vitamin C capsules, Vitamin E....all by Kirkman.

Should I cut back if these are all SCD permissable? Our DAN! dr.

recommended all these and more pre-SCD b/c of lab results of

malabsorbtion. They are very expensive & I don't want to continue

buying them if this diet means I really shouldn't have to. Confused.

HELP! (new to diet and list, 4 1/2 yo son w/PDD already GF/CF

for 1 1/2 yrs)

-- In pecanbread , " McConnell " <ecmmbm@c...>

wrote:

> Hello all - we are 3 months SCD this weekend. There are so many

new folks (WELCOME!!) so I thought a quick encouraging post was in

store.

>

> Luke is doing just fabulous right now, but it has been a bumpy

road. I was still discovering " hidden " illegals for a while (things

I didn't think of like the brand of chicken I bought, the nut butter

I was using, etc) and still will probably continue to deal with that

but whenever we remove that item he just has another great leap of

improvement, it's truly amazing.

>

> He was a very picky eater, VERY picky and very texture sensitive.

He's eating so much better on SCD and it's just amazing for me to

watch. It CAN happen, give it time. My personal advice would be to

go cold turkey and just be flat out honest with kids old enough to

understand at all, that those old foods are gone and we are not going

to eat them anymore because we are working to make our tummies better

inside so that we can feel better. Luke understands this much

clearer than I thought he would - I've watched him turn down

chocolate cake at a party, telling me, " Cake will make the tummy hurt

again " . He remembers what that felt like and he doesn't want to feel

that way anymore!

>

> Since SCD, we've seen improvement in every area I can think

of. " The tummy doesn't hurt " from Luke's own words. The distended

belly has flattened down and stools are usually formed, and down to

once a day which is a big change. Developmentally - he is DRAWING

and WRITING now, that is the most obvious change and something I

never expected to see change so quickly. Check this out!! And feel

free to click on the other links at the top if you want to see my

kids! ;.) http://pages.ivillage.com/michelles2and1/id5.html Other

changes have been decreased tantrums, increased flexibility, just a

general " calmness " about him, he plays (really interacts) with his

little brother now, and they say he is requiring fewer and fewer cues

at school as far as things like circle and small group lessons are

concerned. In fact, he's had a substitute for the last week and I

was shocked at how calm he's remained about going to school!! (that

used to be a HUGE upset) I could go on...

>

> We are remaining low-salicylate right now because those things

DEFINITELY still affect his leaky gut but I look forward to trying

things like honey and some of the higher fruits in a few months, to

see if he can tolerate them. We also keep supplements to the bare

minimum, and he stays more " even " that way - just Kirkman's everyday

multi-vitamin and Custom Probiotic Acidophilus powder. Also, any

medications at all send him reeling so we've done all we can to keep

him off any and so far we've been blessed with no illnesses, even cut

out the allergy medicine and he's managing better without it.

>

> He's just being such a positive DOLL today, I wish I could get

across to you how much different he is. This is the little boy that

I always knew was inside there and I'd seen glimpses of! Now, THIS

is becoming the norm, and while we still see glimpses of the " other

Luke " , it is becoming more and more rare and I can almost always

pinpoint WHY. That is a HUGE deal to me!

>

> Best wishes and prayers to all you new parents, you will find

invaluable help/advice/support here, and ask ANY question - I've done

some pretty dumb things since starting SCD and no one has laughed me

off the list or anything~

>

> in NC

> Mom of Luke, age 5, Asperger's/low-salicylate;

> , age 3; and , 21 mos

> All SCD since 1/26/04

>

>

>

[Guest guest]

>Did you rotate your foods for

>Luke?

No, I did not. I don't want to advise you against your DAN doctor but that is

just our experience. His diet is still limited enough that it is pretty easy

to tell if he's intolerant of something.

>Do

>I just have to bite the bullet and serve it to him until he eats it?

Is there anything legal that would suffice as a " reward " food. Sometimes for us

it's something as simple as a banana or a boiled egg. Just something he really

likes, and if he's HUNGRY, he'll eat a little of something undesirable in order

to get something desirable. Another suggestion is presentation, many have luck

hiding veggies in pancakes and meatballs. We did this a while and still do the

meatballs, but honestly, I found that the baking took WAY too much of my cooking

time and once I got him going on the diet and willing to try new things, I

started just serving the vegetables outright. He now eats peas, limas,

cauliflower, and carrots - all steamed with butter and salt. Again, not much

variety, but that's okay for now I think.

> I am feeling so discouraged now because he will be happy one minute

>but furious the next. We've been doing this since Easter and I guess

>t has been better, but the bad is SOOOOO bad.

These type of mood swings may be indicative of a phenol/salicylate sensitivity.

I hate to overwhelm your thinking but I would be unkind not to bring this up if

it turns out to be a real issue for your son. For kids who react to these

foods, removing them is like NIGHT AND DAY. Kathy sent some great links to

in a recent post.

Best of luck and please hang in there, we've had our ups and downs for sure - we

could have a " down " tomorrow for all I know, but the general trend is FOR SURE

going upward!!

in NC

Mom of Luke, age 5, Asperger's/low-salicylate;

, age 3; and , 21 mos

All SCD since 1/26/04

Re: 3 months this weekend

> Hello all - we are 3 months SCD this weekend. There are so many

new folks (WELCOME!!) so I thought a quick encouraging post was in

store.

, can I ask you a question? Did you rotate your foods for

Luke? My DAN! doctor suggests it so doesn't develop any new

intollerances, but this doesn't make sence to me. If his gut is

healing, would he still develop intollerances? If we are to rotate,

he will eat pork and apples today. I don't want him to have more

than two apples, really. I don't know what else to give him in

rotation. His foods are quite limited. Probably because I couldn't

get him to eat green beans or squash if his life depended on it. Do

I just have to bite the bullet and serve it to him until he eats it?

I am feeling so discouraged now because he will be happy one minute

but furious the next. We've been doing this since Easter and I guess

it has been better, but the bad is SOOOOO bad. He's nine now, soon

he'll be a big teenager. That still scares me.

Thank you for posting your success. This is SO encouraging for me to

hear. I'm sure I'm not the only one!

Helen, hanging-on-a-thread mom to (9, ASD SCD since Easter) and

two other great kids.

For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

websites:

http://www.breakingtheviciouscycle.info

and

http://www.pecanbread.com

[Guest guest]

, I took out all of the high ones for a month, she is doing so well on

the problem behaviors I am a little hesitant to introduce some of them back

until well into SCD. We are SCD, no dairy, and low phenol. I tried putting

banana back in but evidently she is very allergic to it. The worse ones for

us are almond, apple, pineapple, grape, orange and banana (allergic to it or

amines). I did try watered down pineapple and pineapple jello a couple of

times but she started her behavior again (nail picking). It can be done.

There are lots of other foods to choose from. Or you can get the no-fenol

(this is totally allowable) and maybe try it with one food at the time and

see how he does. At least you will know more of what is going on with him

and all this can help him function better.

Oh yeah, raisins are very high and so is honey but I use just a tiny bit

with no problem. I also give her a little bit of tomato juice or she

wouldn't eat a lot of the meats. It doesn't bother her.

Kathy

Abby-9, ASD, UC and SCD for 9 wks one day

Re: 3 months this weekend

> It does sound like this could be a salicylate problem. I am going to

> explore this, but I am nervous. I just read the list of food culprits

> and my son eats a ton of the high salicylate foods. The SCD diet is

> already so limited....I don't know what I would feed him. If he is

> sensitive to salicylates, do I have to remove them all....or just

> some? No almond, raisin, muffins I guess....both almonds, raisins and

> honey! Help! What's left? Just when I thought I could do this SCD

> diet pretty easily.....Can I just give him a digestive no phenol

> ezyme & still feed him the high salicylates, or is that a big no no?

>

>

>

> >

> >

> >

> >

> > For information on the Specific Carbohydrate Diet, please read

> the book _Breaking the Vicious Cycle_ by Elaine Gottschall and read

> the following websites:

> > http://www.breakingtheviciouscycle.info

> > and

> > http://www.pecanbread.com

> >

> >

[Guest guest]

www.houstonni.com . I am not advocating you take things out for a month,

that is just what I did. We had problems with her nail picking until they

bled and this was constant!! It has totally stopped. She will chew on her

shirt a little now but that is nothing to me compared to what she was doing.

I have also got to bite the bullet and totally pull honey and tomato

although I use very little.

Call on the phone to the company and they will send you 12 capsules as a

trial so you do not invest any money in something that your not sure will

work.

Kathy

Re: 3 months this weekend

> >

> >

> > > It does sound like this could be a salicylate problem. I am going

> to

> > > explore this, but I am nervous. I just read the list of food

> culprits

> > > and my son eats a ton of the high salicylate foods. The SCD diet

> is

> > > already so limited....I don't know what I would feed him. If he is

> > > sensitive to salicylates, do I have to remove them all....or just

> > > some? No almond, raisin, muffins I guess....both almonds, raisins

> and

> > > honey! Help! What's left? Just when I thought I could do this SCD

> > > diet pretty easily.....Can I just give him a digestive no phenol

> > > ezyme & still feed him the high salicylates, or is that a big no

> no?

> > >

> > >

> > >

> > > >

> > > >

> > > >

> > > >

> > > > For information on the Specific Carbohydrate Diet, please read

> > > the book _Breaking the Vicious Cycle_ by Elaine Gottschall and

> read

> > > the following websites:

> > > > http://www.breakingtheviciouscycle.info

> > > > and

> > > > http://www.pecanbread.com

> > > >

> > > >

[Guest guest]

Hi Kathy in Ga.-----I used to be Kathy in Ga. too! Lived there 11 years up

until 2 years ago. We may be coming back! I won't miss that pollen

though............

Thank you for keeping up with us. I appreciate the support so much. Yes, we

have really seen some good things recently. No whining (she used to do this

for me all day sometimes!) much less transition issues, I can blow dry her

hair! Last night she let me floss her teeth. I couldn't believe it. She is

more relaxed, less stressed, more exploratory, more affectionate and is

having some pretty good BM's. Not as constipated. No nail picking or

bleeding at ALL! We do have other issues but will work them out, some

bruises won't heal, trying to feed her on this limited diet is tough for me,

doing a little shirt chewing and will still have a tantrum now and again but

nothing like before. Thank you Elaine! I totally agree with you about paying

a price for these small infractions. I guess it just builds up. I have got

to try to take out honey and tomato and also try to introduce one or two

things back and try the no-fenol again. It's all trial and error with this.

Your child will let you know what they can and cannot tolerate. Yes, Angie

is very smart and asap I plan to get a juicer to get some more veggies into

the child! Take care, sorry so long.

Kathy

Abby-9, ASD, UC, SCD for 9 weeks + one day

Re: 3 months this weekend

> Kathy,

>

> I've been following your reports of Abby's progress, but not posting

> for a few weeks, but now that I'm back, I want say I'm so happy that

> you and Abby have enjoyed steady progress with Abby's health.

>

> As you might recall we are doing this diet with low salicylates

> too. We have been doing well with digestion, but are not

> introducing salicylates back much with much success either. The

> main issue now is the pollen in the air I think. When that goes

> down, and when we do not have a cold (we had one last week), we

> might introduce a little more.

>

> We have tried some of the things you tried and like you found that

> it is possible to reintroduce them in small amounts, but you pay a

> price with low grade symptoms.

>

> By the way, have you started juicing yet? I have been juicing

> allittle, mostly fruits. I remember that Angie suggested that over

> time vegetable juices (not honey and fruits) might help with

> salicylate sensitivities, but she was also using homeopathy I

> think. Anyway, I haven't given up hope, I just haven't really been

> focused on the issue. I'm waiting until pollen subsides, and maybe

> the gut heals some more.

>

> Anyways, keep up your good work and thanks for posting regularly.

> It really helps keep us going.

>

> Kathy in GA

> SCD 8 weeks, 10 & 8 MCS

>

>

> > >

> > >

> > > >

> > > >

> > > >

> > > >

> > > > For information on the Specific Carbohydrate Diet, please

> read

> > > the book _Breaking the Vicious Cycle_ by Elaine Gottschall and

> read

> > > the following websites:

> > > > http://www.breakingtheviciouscycle.info

> > > > and

> > > > http://www.pecanbread.com

> > > >

> > > >