Re: Ready to give up :-( loosing hope

[Guest guest]

Hey Nikki,Sorry you are going through all this, sounds incredibly stressful. And unrelenting. The one thing that stands out is the amount of grape juice you aregiving him - tons of it - even diluted - I think that is too much andalso may regrow some yeast. Can you switch the juice around -give him some cider and some tropicana original oj in some of the drinks you give him? I also notice that you don't give him much fat. Is there a healthreason for doing so? Otherwise, I would increase it as thisis an incredibly lean diet and maybe he needs more healthyfats. He's a growing boy and coconut oil has medium chainfatty acids which are considered brain food. I know that 21 days seems like a lot when you are in the thick ofthings, but SCD is a diet that takes patience and there's still quitea lot of gut instability during this introductory period. Furthermore,there is a definite connection between the gut and the brain, but youcannot predict the order in which they will heal. It seems like it has switchedfrom the opposite paradigm, pre-SCD, but I think the fact that thingshave changed so much is a hopeful sign. If SCD wasn't working,there would be no effect on his bowel, no changes at all. I also think there are levels or die off that are not resolved bycharcoal or epsom baths - they take care of some of it, take theedge off, but when you are an autistic 4 yo, and you don't havecontrol over feeling so much worse, some behavioral changes are not surprising. MaraI'm sending this message out as a last stitch hope before throwing in the towel on our current regimen. Sorry this is so long but I'm ready to give up unless someone tells me otherwise. My son, who is almost 4 & has autism, has been gfcfsf for over a year with great success & much progress in speech & behaviors. He still struggles with socialization but we are working on it. We have barely treaded on the biomedical road nearly skimming the surface on the vast amount of treatments & suppliments, as most of the time up till this point we have been treating yeast & gut issues. I feel like I had finally grabbed a hold of his yeast problems with several rounds of different rx antifungals (currently on ketoconozole plus probiotics & basic vitamins) and by putting him on a low-sugar very limited grain diet. His OAT finally came back with levels that were in the normal range! Unfortunately however, my son has always had disgusting bowel movements and still was having them even with the test results showing the yeast was under controll. His poop would look like a melted chocolate bar with penut butter & lots of oil and seeds from all the berries he was eating :-( it was everywhere & took a full tub of wipes to clean off. I should mention that this bothered him in no way, only me, the one who would have to tackle these diapers from hell. So with yeast under controll and behaviors better then they had ever been before (no more opening & closing things & he listened to me & was super sweet & cuddly :-) I decided to look into the SCD diet to help with his bm's. I was under the impression that this was going to be the answer to everything & help take care of my son's bowel & gut issues and that everything would be great. Now this really wasn't that hard of a transition from the diet he was on before. Remember I had him on a anti-yeast diet which means very low sugar & grain, so he was eating lot's of protein, low carb veggies, berries & 11 gfcf kinnikkinnik animal cookies per day as his reward for finishing his meal. To drink I would make a sippy cup with water add 2 tablespoons of blueberry juice & a scoop of stevia. So the new diet basically meant removing the animal cookies and starting from the intro with broiling meats & cooking all fruit & doing welch's grape juice diluted. This is what I did. We are now on day 21 of the SCD diet and he is eating foods from the intro & stage 1 from pecanbread.com. After 2 weeks into the diet his bowel movements began to form & I got really excited, he is still to this moment having great formed BM's the first time in his life!!!! Now here is the problem.... his behavior has taken a turn for the worst. He is no longer calm like he used to be, but very hyper & aggressive (pulling my hair & bouncing in place alot) never was like this! He is cranky & irritable 85% of the time he is with me (he goes to preschool from 8-2) and has a definite loss of communication & speech. He no longer will listen to me when I ask him to something simple like wash his hands, everything takes reinforcing & never needed to before. everything is a challenge. This is not die off because I give charcol & nothing changes. I've ramped up epsom salt baths to 2 cups per nite still nothing changes. The only other thing I can think of is that he may be getting too many phenols? But when I think about his diet before, berries are loaded with phenols & he was great. Okay so here is what he is eating now: Breakfast:-scrambled egg w/garlic in a little olive oil spray-1/4 cup avacado-cooked pear sauce-2 little jello jigglers (made with knox, 1/2 water, 1/2 welch's white grape juice) -8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice Snack-chicken pancakes (just egg & chicken)-1 jello jiggler-8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice Lunch-pureed boiled turkey with squash, garlic & salt-1/4 cup avacado-cooked pear sauce-2 jellp jigglers-8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice Snack-chicken pancakes (just egg & chicken)-1 jello jiggler-8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice Dinner-broiled burger patties, chicken patties or turkey (just the ground meat & salt)-1/4 avacado-cooked pear sauce-2 jello jigglers-8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice Meds-ketoconozole-calcium-zinc-vit. d-vit. c-acidophilus-lactobacillus duo-OLE Even if I wanted to go back to what he was eating & drinking before, the food might be okay because I am blessed that he will eat just about anything but when I tried to give him the water with blueberry & stevia he nearly spit it out & would not take another sip. I know that liquids are so important because one of his blood tests came back that he was severly dehidrated. So I guess what I am getting at is do I just completely go back & figure out what he will drink & take the nasty poop should it return or do Istick with what he is on now & make some changes? I guess I am reaching out because I am exausted & frustrated. Oh did I mention I am a single mom with no help. LOL so you can imagine where I am at mentally. I haven't lost it yet but I am about to so I decided to send this message. Please someone offer any kind of encouragement & advice. Any a this point would help me so much. I've gott to make changes here I'm just terrified of making the wrong ones again & steering my little one into a full blown regression. Appreciate any & all help,

[Guest guest]

Isn't there a listserve on Yahoo for pecanbread.com followers? They may be very

helpful with behavioral issues as there are so many parents with ASD kids there

to give advice. Also, with behavioral changes, please be sure he is not bothered

by something like an ear infection or other problems.It's hard when kids don't

tell us exactly what is going on.

Mara is right- SCD is slow and at one month all kinds of gut changes can be

going on. Progress is not always steady but we have to keep at it.

I hope he- and you feel better soon.

PJ

>

> >

> >

> > I'm sending this message out as a last stitch hope before throwing in the

towel on our current regimen. Sorry this is so long but I'm ready to give up

unless someone tells me otherwise.

> >

> > My son, who is almost 4 & has autism, has been gfcfsf for over a year with

great success & much progress in speech & behaviors. He still struggles with

socialization but we are working on it. We have barely treaded on the biomedical

road nearly skimming the surface on the vast amount of treatments & suppliments,

as most of the time up till this point we have been treating yeast & gut issues.

I feel like I had finally grabbed a hold of his yeast problems with several

rounds of different rx antifungals (currently on ketoconozole plus probiotics &

basic vitamins) and by putting him on a low-sugar very limited grain diet. His

OAT finally came back with levels that were in the normal range! Unfortunately

however, my son has always had disgusting bowel movements and still was having

them even with the test results showing the yeast was under controll. His poop

would look like a melted chocolate bar with penut butter & lots of oil and seeds

from all the berries he was eating :-( it was everywhere & took a full tub of

wipes to clean off.

> >

> > I should mention that this bothered him in no way, only me, the one who

would have to tackle these diapers from hell.

> >

> > So with yeast under controll and behaviors better then they had ever been

before (no more opening & closing things & he listened to me & was super sweet &

cuddly :-) I decided to look into the SCD diet to help with his bm's. I was

under the impression that this was going to be the answer to everything & help

take care of my son's bowel & gut issues and that everything would be great. Now

this really wasn't that hard of a transition from the diet he was on before.

Remember I had him on a anti-yeast diet which means very low sugar & grain, so

he was eating lot's of protein, low carb veggies, berries & 11 gfcf kinnikkinnik

animal cookies per day as his reward for finishing his meal. To drink I would

make a sippy cup with water add 2 tablespoons of blueberry juice & a scoop of

stevia. So the new diet basically meant removing the animal cookies and starting

from the intro with broiling meats & cooking all fruit & doing welch's grape

juice diluted. This is what I did. We are now on day 21 of the SCD diet and he

is eating foods from the intro & stage 1 from pecanbread.com. After 2 weeks into

the diet his bowel movements began to form & I got really excited, he is still

to this moment having great formed BM's the first time in his life!!!!

> >

> > Now here is the problem.... his behavior has taken a turn for the worst. He

is no longer calm like he used to be, but very hyper & aggressive (pulling my

hair & bouncing in place alot) never was like this! He is cranky & irritable 85%

of the time he is with me (he goes to preschool from 8-2) and has a definite

loss of communication & speech. He no longer will listen to me when I ask him to

something simple like wash his hands, everything takes reinforcing & never

needed to before. everything is a challenge. This is not die off because I give

charcol & nothing changes. I've ramped up epsom salt baths to 2 cups per nite

still nothing changes. The only other thing I can think of is that he may be

getting too many phenols? But when I think about his diet before, berries are

loaded with phenols & he was great. Okay so here is what he is eating now:

> >

> > Breakfast:

> > -scrambled egg w/garlic in a little olive oil spray

> > -1/4 cup avacado

> > -cooked pear sauce

> > -2 little jello jigglers (made with knox, 1/2 water, 1/2 welch's white grape

juice)

> > -8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice

> >

> > Snack

> > -chicken pancakes (just egg & chicken)

> > -1 jello jiggler

> > -8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice

> >

> > Lunch

> > -pureed boiled turkey with squash, garlic & salt

> > -1/4 cup avacado

> > -cooked pear sauce

> > -2 jellp jigglers

> > -8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice

> >

> > Snack

> > -chicken pancakes (just egg & chicken)

> > -1 jello jiggler

> > -8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice

> >

> > Dinner

> > -broiled burger patties, chicken patties or turkey (just the ground meat &

salt)

> > -1/4 avacado

> > -cooked pear sauce

> > -2 jello jigglers

> > -8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice

> >

> > Meds

> > -ketoconozole

> > -calcium

> > -zinc

> > -vit. d

> > -vit. c

> > -acidophilus

> > -lactobacillus duo

> > -OLE

> >

> > Even if I wanted to go back to what he was eating & drinking before, the

food might be okay because I am blessed that he will eat just about anything but

when I tried to give him the water with blueberry & stevia he nearly spit it out

& would not take another sip. I know that liquids are so important because one

of his blood tests came back that he was severly dehidrated. So I guess what I

am getting at is do I just completely go back & figure out what he will drink &

take the nasty poop should it return or do Istick with what he is on now & make

some changes? I guess I am reaching out because I am exausted & frustrated. Oh

did I mention I am a single mom with no help. LOL so you can imagine where I am

at mentally. I haven't lost it yet but I am about to so I decided to send this

message. Please someone offer any kind of encouragement & advice. Any a this

point would help me so much. I've gott to make changes here I'm just terrified

of making the wrong ones again & steering my little one into a full blown

regression.

> >

> > Appreciate any & all help,

> >

> >

> >

> >

> >

>

[Guest guest]

One other point. At about this point into SCDI got incredibly sick from die off. Had no energy and thenout and out fever for a while. Epsom saltbaths and charcoal just touched the surface of it. So, maybe the little guy is just not up to par butit hasn't fully manifested yet into a recognizablesymptom. The way behavior gets worse whenkids and, heck, grown ups too, are coming downwith something, but it is not there yet.MaraHey Nikki,Sorry you are going through all this, sounds incredibly stressful. And unrelenting. The one thing that stands out is the amount of grape juice you aregiving him - tons of it - even diluted - I think that is too much andalso may regrow some yeast. Can you switch the juice around -give him some cider and some tropicana original oj in some of the drinks you give him? I also notice that you don't give him much fat. Is there a healthreason for doing so? Otherwise, I would increase it as thisis an incredibly lean diet and maybe he needs more healthyfats. He's a growing boy and coconut oil has medium chainfatty acids which are considered brain food. I know that 21 days seems like a lot when you are in the thick ofthings, but SCD is a diet that takes patience and there's still quitea lot of gut instability during this introductory period. Furthermore,there is a definite connection between the gut and the brain, but youcannot predict the order in which they will heal. It seems like it has switchedfrom the opposite paradigm, pre-SCD, but I think the fact that thingshave changed so much is a hopeful sign. If SCD wasn't working,there would be no effect on his bowel, no changes at all. I also think there are levels or die off that are not resolved bycharcoal or epsom baths - they take care of some of it, take theedge off, but when you are an autistic 4 yo, and you don't havecontrol over feeling so much worse, some behavioral changes are not surprising. MaraI'm sending this message out as a last stitch hope before throwing in the towel on our current regimen. Sor! ry this is so long but I'm ready to give up unless someone tells me otherwise. My son, who is almost 4 & has autism, has been gfcfsf for over a year with great success & much progress in speech & behaviors. He still struggles with socialization but we are working on it. We have barely treaded on the biomedical road nearly skimming the surface on the vast amount of treatments & suppliments, as most of the time up till this point we have been treating yeast & gut issues. I feel like I had finally grabbed a hold of his yeast problems with several rounds of different rx antifungals (currently on ketoconozole plus probiotics & basic vitamins) and by putting him on a low-sugar very limited grain diet. His OAT finally came back with levels that were in the norm! al range! Unfortunately however, my son has always had disgusting bowel movements and still was having them even with the test results showing the yeast was under controll. His poop would look like a melted chocolate bar with penut butter & lots of oil and seeds from all the berries he was eating :-( it was everywhere & took a full tub of wipes to clean off. I should mention that this bothered him in no way, only me, the one who would have to tackle these diapers from hell. So with yeast under controll and behaviors better then they had ever been before (no more opening & clos! ing things & he listened to me & was super sweet & cuddly :-) I decided to look into the SCD diet to help with his bm's. I was under the impression that this was going to be the answer to everything & help take care of my son's bowel & gut issues and that everything would be great. Now this really wasn't that hard of a transition from the diet he was on before. Remember I had him on a anti-yeast diet which means very low sugar & grain, so he was eating lot's of protein, low carb veggies, berries & 11 gfcf kinnikkinnik animal cookies per day as his reward for finishing his meal. To drink I would make a sippy cup with water add 2 tablespoons of blueberry juice & a scoop of stevia. So the new diet basically meant removing the animal cookies and starting from the intro with broiling meats & cooking all fruit & doing welch's grape juice diluted. This is what I did. We are now on day 21 of the SCD diet and he! is eating foods from the intro & stage 1 from pecanbread.com. After 2 weeks into the diet his bowel movements began to form & I got really excited, he is still to this moment having great formed BM's the first time in his life!!!! Now here is the problem.... his behavior has taken a turn for the worst. He is no longer calm like he used to be, but very hyper & aggressive (pulling my hair & bouncing in place alot) never was like this! He is cranky & irritable 85% of the time he is with me (he goes to preschool from 8-2) and has a definite loss of communication & speech. He no longer will listen to me when I ask him to something simple like wash his hands, everything takes rein! forcing & never needed to before. everything is a challenge. This is not die off because I give charcol & nothing changes. I've ramped up epsom salt baths to 2 cups per nite still nothing changes. The only other thing I can think of is that he may be getting too many phenols? But when I think about his diet before, berries are loaded with phenols & he was great. Okay so here is what he is eating now: Breakfast:-scrambled egg w/garlic in a little olive oil spray-1/4 cup avacado-cooked pear sauce-2 little jello jigglers (made with knox, 1/2 water, 1/2 welch's white grape juice) -8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice Snack-chicken pancakes (just egg & chicken)-1 jello jiggler-8 oz sippy cup with 1/2 water ! 1/2 welch's purple grape juice Lunch-pureed boiled turkey with squash, garlic & salt-1/4 cup avacado-cooked pear sauce-2 jellp jigglers-8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice Snack-chicken pancakes (just egg & chicken)-1 jello jiggler-8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice Dinner-broiled burger patties, chicken patt! ies or turkey (just the ground meat & salt)-1/4 avacado-cooked pear sauce-2 jello jigglers-8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice Meds-ketoconozole-calcium-zinc-vit. d-vit. c-acidophilus-lactobacillus duo-OLE Even if I wanted to go back to what he was eating & drinking before, the food might be okay because I am blessed that he will eat just about ! anything but when I tried to give him the water with blueberry & stevia he nearly spit it out & would not take another sip. I know that liquids are so important because one of his blood tests came back that he was severly dehidrated. So I guess what I am getting at is do I just completely go back & figure out what he will drink & take the nasty poop should it return or do Istick with what he is on now & make some changes? I guess I am reaching out because I am exausted & frustrated. Oh did I mention I am a single mom with no help. LOL so you can imagine where I am at mentally. I haven't lost it yet but I am about to so I decided to send this message. Please someone offer any kind of encouragement & advice. Any a this point would help me so much. I've gott to make changes here I'm just terrified of making the wrong ones again & steering my little one into a full blown regression. Appreciate any & all help,

[Guest guest]

,I would have to agree with Mara, he looks to be getting a lot of juice and not enough fat. Will he not take plain water? What about diluted lemonade? If he is eating pear sauce, why not cook the pears in unsalted butter (preferably from a grass fed cow)? It makes it rich and lovely. Coconut oil with butter and apples or pears is really yummy too. Use butter on the eggs as well, and don't just spray it on! ; ) Same with the chicken pancakes -- if you cook them in a pan, do it with butter or coconut oil. Also, there are not fish oils in his supplements -- does he like salmon or maybe could he take a fish oil supplement? It is really excellent for brain development.We all heal differently and sometimes it looks like we are

regressing, but it is all part of the healing process. Don't forget, the yeast may be out of his gut, but did it travel and settle anywhere else in the body? Also, the body will 'store' what it can't deal with at the moment. Once the body starts to heal, those stored things are dealt with and they sometimes cause problems before they are completely sorted. The fact that his BMs are so improved means that he is most likely healing there and absorbing more. Which in turn will lead to a stronger body/system more readily able to fight to return to homeostasis. Only 21 days and you have had some good improvement, a lot of people (like those with CD or UC) have to wait much longer and be encouraged with smaller amounts of progress.Hang tough! You are heading in the right direction.Amelia To: BTVC-SCD ; pecanbread ; GFCFKids ; BioMedHeads ; ANDI-ADI ; taca-usa ; ARIsupport-owner Sent: Wed, May 26, 2010 11:47:35 PMSubject: Ready to give up :-( loosing hope

I'm sending this message out as a last stitch hope before throwing in the towel on our current regimen. Sorry this is so long but I'm ready to give up unless someone tells me otherwise.

My son, who is almost 4 & has autism, has been gfcfsf for over a year with great success & much progress in speech & behaviors. He still struggles with socialization but we are working on it. We have barely treaded on the biomedical road nearly skimming the surface on the vast amount of treatments & suppliments, as most of the time up till this point we have been treating yeast & gut issues. I feel like I had finally grabbed a hold of his yeast problems with several rounds of different rx antifungals (currently on ketoconozole plus probiotics & basic vitamins) and by putting him on a low-sugar very limited grain diet. His OAT finally came back with levels that were in the normal range! Unfortunately however, my son has always had disgusting bowel movements and still was having them even with the test results showing the yeast was under controll. His poop would look like a melted chocolate bar with penut

butter & lots of oil and seeds from all the berries he was eating :-( it was everywhere & took a full tub of wipes to clean off.

I should mention that this bothered him in no way, only me, the one who would have to tackle these diapers from hell.

So with yeast under controll and behaviors better then they had ever been before (no more opening & closing things & he listened to me & was super sweet & cuddly :-) I decided to look into the SCD diet to help with his bm's. I was under the impression that this was going to be the answer to everything & help take care of my son's bowel & gut issues and that everything would be great. Now this really wasn't that hard of a transition from the diet he was on before. Remember I had him on a anti-yeast diet which means very low sugar & grain, so he was eating lot's of protein, low carb veggies, berries & 11 gfcf kinnikkinnik animal cookies per day as his reward for finishing his meal. To drink I would make a sippy cup with water add 2 tablespoons of blueberry juice & a scoop of stevia. So the new diet basically meant removing the animal cookies and starting from the intro with broiling

meats & cooking all fruit & doing welch's grape juice diluted. This is what I did. We are now on day 21 of the SCD diet and he is eating foods from the intro & stage 1 from pecanbread.com. After 2 weeks into the diet his bowel movements began to form & I got really excited, he is still to this moment having great formed BM's the first time in his life!!!!

Now here is the problem.... his behavior has taken a turn for the worst. He is no longer calm like he used to be, but very hyper & aggressive (pulling my hair & bouncing in place alot) never was like this! He is cranky & irritable 85% of the time he is with me (he goes to preschool from 8-2) and has a definite loss of communication & speech. He no longer will listen to me when I ask him to something simple like wash his hands, everything takes reinforcing & never needed to before. everything is a challenge. This is not die off because I give charcol & nothing changes. I've ramped up epsom salt baths to 2 cups per nite still nothing changes. The only other thing I can think of is that he may be getting too many phenols? But when I think about his diet before, berries are loaded with phenols & he was great. Okay so here is what he is eating now:

Breakfast:

-scrambled egg w/garlic in a little olive oil spray

-1/4 cup avacado

-cooked pear sauce

-2 little jello jigglers (made with knox, 1/2 water, 1/2 welch's white grape juice)

-8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice

Snack

-chicken pancakes (just egg & chicken)

-1 jello jiggler

-8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice

Lunch

-pureed boiled turkey with squash, garlic & salt

-1/4 cup avacado

-cooked pear sauce

-2 jellp jigglers

-8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice

Snack

-chicken pancakes (just egg & chicken)

-1 jello jiggler

-8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice

Dinner

-broiled burger patties, chicken patties or turkey (just the ground meat & salt)

-1/4 avacado

-cooked pear sauce

-2 jello jigglers

-8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice

Meds

-ketoconozole

-calcium

-zinc

-vit. d

-vit. c

-acidophilus

-lactobacillus duo

-OLE

Even if I wanted to go back to what he was eating & drinking before, the food might be okay because I am blessed that he will eat just about anything but when I tried to give him the water with blueberry & stevia he nearly spit it out & would not take another sip. I know that liquids are so important because one of his blood tests came back that he was severly dehidrated. So I guess what I am getting at is do I just completely go back & figure out what he will drink & take the nasty poop should it return or do Istick with what he is on now & make some changes? I guess I am reaching out because I am exausted & frustrated. Oh did I mention I am a single mom with no help. LOL so you can imagine where I am at mentally. I haven't lost it yet but I am about to so I decided to send this message. Please someone offer any kind of encouragement & advice. Any a this point would help me so much. I've gott to make changes here I'm

just terrified of making the wrong ones again & steering my little one into a full blown regression.

Appreciate any & all help,

[Guest guest]

I am not a doctor, but in my opinion, you need to give this diet a lot more

time….3 months…..Don't Give Up!!! He is going through the equivalent of

sugar/starch withdrawal……The reason is you are not giving him anything bad…this

diet involves only healthy food…..

I am not autisitc…but it took me 3 months for the diet to begin to really

work….I was exhausted and irritated all the time….I have now been on the diet

for 5 months and I have never felt so good!!!!!!

I don't know what others have to say….but I would give this diet more time,

because there is nothing harmful about it….and your son just needs to adjust.

Again….my 2 cents…

-rzellman

[Guest guest]

I

would join the pecanbread Yahoo group for a while, so you can discover what all

the other moms are doing in implementing SCD for their children in the ASD spectrum.

Lots of advice and experiences to draw on.

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

There

is also a website full of information for kids on SCD dealing with the same

issues. www.pecanbread.com

Many of us are also in the pecanbread group. We’re

all implementing SCD, but parents with children often need extra support.

Kim M.

SCD 6 years

Sphincter of Oddi dysfunction 6+ years

neurological & spinal deterioration 3+ years

[Guest guest]

Thanks amelia. I will look into more fats.

To: BTVC-SCD Sent: Thu, May 27, 2010 4:17:45 AMSubject: Re: Ready to give up :-( loosing hope

,I would have to agree with Mara, he looks to be getting a lot of juice and not enough fat. Will he not take plain water? What about diluted lemonade? If he is eating pear sauce, why not cook the pears in unsalted butter (preferably from a grass fed cow)? It makes it rich and lovely. Coconut oil with butter and apples or pears is really yummy too. Use butter on the eggs as well, and don't just spray it on! ; ) Same with the chicken pancakes -- if you cook them in a pan, do it with butter or coconut oil. Also, there are not fish oils in his supplements -- does he like salmon or maybe could he take a fish oil supplement? It is really excellent for brain development.We all heal differently and sometimes it looks like we are regressing, but it is all part of the healing process. Don't forget, the yeast may be out of his gut, but did it travel and settle anywhere else in

the body? Also, the body will 'store' what it can't deal with at the moment. Once the body starts to heal, those stored things are dealt with and they sometimes cause problems before they are completely sorted. The fact that his BMs are so improved means that he is most likely healing there and absorbing more. Which in turn will lead to a stronger body/system more readily able to fight to return to homeostasis. Only 21 days and you have had some good improvement, a lot of people (like those with CD or UC) have to wait much longer and be encouraged with smaller amounts of progress.Hang tough! You are heading in the right direction.Amelia

From: Nikki B <motherwarrior2j@ yahoo.com>To: BTVC-SCD@yahoogroup s.com; pecanbread@yahoogro ups.com; GFCFKids@yahoogroup s.com; BioMedHeads@ yahoogroups. com; ANDI-ADI@yahoogroup s.com; taca-usa@yahoogroup s.com; ARIsupport-owner@ yahoogroups. comSent: Wed, May 26, 2010 11:47:35 PMSubject: Ready to give up :-( loosing hope

I'm sending this message out as a last stitch hope before throwing in the towel on our current regimen. Sorry this is so long but I'm ready to give up unless someone tells me otherwise.

My son, who is almost 4 & has autism, has been gfcfsf for over a year with great success & much progress in speech & behaviors. He still struggles with socialization but we are working on it. We have barely treaded on the biomedical road nearly skimming the surface on the vast amount of treatments & suppliments, as most of the time up till this point we have been treating yeast & gut issues. I feel like I had finally grabbed a hold of his yeast problems with several rounds of different rx antifungals (currently on ketoconozole plus probiotics & basic vitamins) and by putting him on a low-sugar very limited grain diet. His OAT finally came back with levels that were in the normal range! Unfortunately however, my son has always had disgusting bowel movements and still was having them even with the test results showing the yeast was under controll. His poop would look like a melted chocolate bar with penut

butter & lots of oil and seeds from all the berries he was eating :-( it was everywhere & took a full tub of wipes to clean off.

I should mention that this bothered him in no way, only me, the one who would have to tackle these diapers from hell.

So with yeast under controll and behaviors better then they had ever been before (no more opening & closing things & he listened to me & was super sweet & cuddly :-) I decided to look into the SCD diet to help with his bm's. I was under the impression that this was going to be the answer to everything & help take care of my son's bowel & gut issues and that everything would be great. Now this really wasn't that hard of a transition from the diet he was on before. Remember I had him on a anti-yeast diet which means very low sugar & grain, so he was eating lot's of protein, low carb veggies, berries & 11 gfcf kinnikkinnik animal cookies per day as his reward for finishing his meal. To drink I would make a sippy cup with water add 2 tablespoons of blueberry juice & a scoop of stevia. So the new diet basically meant removing the animal cookies and starting from the intro with broiling

meats & cooking all fruit & doing welch's grape juice diluted. This is what I did. We are now on day 21 of the SCD diet and he is eating foods from the intro & stage 1 from pecanbread.com. After 2 weeks into the diet his bowel movements began to form & I got really excited, he is still to this moment having great formed BM's the first time in his life!!!!

Now here is the problem.... his behavior has taken a turn for the worst. He is no longer calm like he used to be, but very hyper & aggressive (pulling my hair & bouncing in place alot) never was like this! He is cranky & irritable 85% of the time he is with me (he goes to preschool from 8-2) and has a definite loss of communication & speech. He no longer will listen to me when I ask him to something simple like wash his hands, everything takes reinforcing & never needed to before. everything is a challenge. This is not die off because I give charcol & nothing changes. I've ramped up epsom salt baths to 2 cups per nite still nothing changes. The only other thing I can think of is that he may be getting too many phenols? But when I think about his diet before, berries are loaded with phenols & he was great. Okay so here is what he is eating now:

Breakfast:

-scrambled egg w/garlic in a little olive oil spray

-1/4 cup avacado

-cooked pear sauce

-2 little jello jigglers (made with knox, 1/2 water, 1/2 welch's white grape juice)

-8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice

Snack

-chicken pancakes (just egg & chicken)

-1 jello jiggler

-8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice

Lunch

-pureed boiled turkey with squash, garlic & salt

-1/4 cup avacado

-cooked pear sauce

-2 jellp jigglers

-8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice

Snack

-chicken pancakes (just egg & chicken)

-1 jello jiggler

-8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice

Dinner

-broiled burger patties, chicken patties or turkey (just the ground meat & salt)

-1/4 avacado

-cooked pear sauce

-2 jello jigglers

-8 oz sippy cup with 1/2 water 1/2 welch's purple grape juice

Meds

-ketoconozole

-calcium

-zinc

-vit. d

-vit. c

-acidophilus

-lactobacillus duo

-OLE

Even if I wanted to go back to what he was eating & drinking before, the food might be okay because I am blessed that he will eat just about anything but when I tried to give him the water with blueberry & stevia he nearly spit it out & would not take another sip. I know that liquids are so important because one of his blood tests came back that he was severly dehidrated. So I guess what I am getting at is do I just completely go back & figure out what he will drink & take the nasty poop should it return or do Istick with what he is on now & make some changes? I guess I am reaching out because I am exausted & frustrated. Oh did I mention I am a single mom with no help. LOL so you can imagine where I am at mentally. I haven't lost it yet but I am about to so I decided to send this message. Please someone offer any kind of encouragement & advice. Any a this point would help me so much. I've gott to make changes here I'm

just terrified of making the wrong ones again & steering my little one into a full blown regression.

Appreciate any & all help,

[Guest guest]

Okay I can appreciate that. Thanks ruth.

To: BTVC-SCD Sent: Thu, May 27, 2010 7:57:32 AMSubject: Re: Ready to give up :-( loosing hopeI am not a doctor, but in my opinion, you need to give this diet a lot more time….3 months…..Don't Give Up!!! He is going through the equivalent of sugar/starch withdrawal……The reason is you are not giving him anything bad…this diet involves only healthy food…..I am not autisitc…but it took me 3 months for the diet to begin to really work….I was exhausted and irritated all the time….I have now been on the diet for 5 months and I have never felt so good!!!!!!I don't know what others have to say….but I would give this diet more time, because there is

nothing harmful about it….and your son just needs to adjust.Again….my 2 cents…-rzellman------------------------------------

[Guest guest]

Hi ,

It is tough having a special needs child and being a single mom--I know, I'm there as well.

You didn't mention if he can tolerate the 24 hour yogurt or not.

I agree with Mara--I don't think he has enough fat in his diet, even though the avocado is a wonderful choice. Making the yogurt with whole milk is satisfying and tasty and I think with time, helps to effect positive change. I know my son does well when he is consistently eating the yogurt ( not ASD, but PANDAS-OCD, ADHD, and tics) I put legal vanilla in it and he likes it without any sweetener--you can put apple or pear sauce in it to sweeten if you don't use honey due to yeast.

At 4 years of age, he needs fats for everything. Salmon is another nice protein choice that my kids always loved.

I think he is making progress--sometimes we take a step backward before we make a step forward. Positive bowel changes mean you are doing the right thing. Hang in there a little more and talk to the other ASD moms on pecanbread to get some pointers and support.

Best of luck,

Terry

[Guest guest]

I'm on it Kim, thank u.

To: BTVC-SCD Sent: Thu, May 27, 2010 8:29:39 AMSubject: Re:Re: Ready to give up :-( loosing hope

I would join the pecanbread Yahoo group for a while, so you can discover what all the other moms are doing in implementing SCD for their children in the ASD spectrum. Lots of advice and experiences to draw on.

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

There is also a website full of information for kids on SCD dealing with the same issues. www.pecanbread. com

Many of us are also in the pecanbread group. We’re all implementing SCD, but parents with children often need extra support.

Kim M.

SCD 6 years

Sphincter of Oddi dysfunction 6+ years

neurological & spinal deterioration 3+ years

Kim

[Guest guest]

Thanks Terry,

I would love to try yogurt, terrified of the casein leeks. But we will see.

thanks so much!

To: BTVC-SCD <BTVC-SCD >Sent: Thu, May 27, 2010 9:08:24 AMSubject: Re: Ready to give up :-( loosing hope

Hi ,

It is tough having a special needs child and being a single mom--I know, I'm there as well.

You didn't mention if he can tolerate the 24 hour yogurt or not.

I agree with Mara--I don't think he has enough fat in his diet, even though the avocado is a wonderful choice. Making the yogurt with whole milk is satisfying and tasty and I think with time, helps to effect positive change. I know my son does well when he is consistently eating the yogurt ( not ASD, but PANDAS-OCD, ADHD, and tics) I put legal vanilla in it and he likes it without any sweetener--you can put apple or pear sauce in it to sweeten if you don't use honey due to yeast.

At 4 years of age, he needs fats for everything. Salmon is another nice protein choice that my kids always loved.

I think he is making progress--sometimes we take a step backward before we make a step forward. Positive bowel changes mean you are doing the right thing. Hang in there a little more and talk to the other ASD moms on pecanbread to get some pointers and support.

Best of luck,

Terry

[Guest guest]

Hey ,I think it's really, really great that you are doing so much for your son!! I give you all  the positive encouragement that I can! I also encourage you to make choices out of hope and faith, and not fear.

I think you are doing an excellent job with the diet. If you are concerned about casein with the yogurt, I think the goat milk clears that up pretty good, it's great stuff. Also, I'm curious about your zinc supplement: how much are you administering? Just in case you don't know, it's not good to go over 30 mg total a day or else it starts interfering with the immune system. I would also recommend trying to integrate a multivitamin and fish oil.

Also, I saw that your son is only really getting complex carbs at lunch. That can be hard and create behavioral problems - I know with bacteria neurotoxin caused manic depression, that can induce mania real fast (getting carbs from just sugars, and not enough complex carbs). I would try and get him a little bit more complex carbs here and there more often, he'll probably feel better. Maybe a little steamed zucchini or something? boiled/pureed carrots are really great, but at the beginning some people need them boiled for 4 hours I think.

Getting something green into his diet soon would probably also help alot. Perhaps some steamed/pureed spinach or something? Or even a little green beans soon?Also, I'd be careful with the calcium - does it have magnesium with it? if not, it can cause hyperactivity. 2:1 cal/mag ratio is most common, and is pretty much the Freeda ratio. That should be fine, if you really want to get into it 1:1 is a better ratio and you can add a little separate magnesium.

Also, I would recommend trying the electrolyte drink, especially if he has had problems with dehydration.Best wishes, keep up the good work, and let us know how it's going!

 

I'm on it Kim, thank u.

To: BTVC-SCD

Sent: Thu, May 27, 2010 8:29:39 AMSubject: Re:Re: Ready to give up :-( loosing hope

 

 

I would join the pecanbread Yahoo group for a while, so you can discover what all the other moms are doing in implementing SCD for their children in the ASD spectrum.  Lots of advice and experiences to draw on.

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

 

There is also a website full of information for kids on SCD dealing with the same issues.  www.pecanbread. com

 

Many of us are also in the pecanbread group.  We’re all implementing SCD, but parents with children often need extra support.

 

Kim M.

SCD 6 years

Sphincter of Oddi dysfunction 6+ years

neurological & spinal deterioration 3+ years

 

 Kim

[Guest guest]

I hear you laura, & thanku for the encouragement. The zinc he was on 50 mg per day because his blood test said he needed zinc do to low levels & elivated copper. I dunno, I pulled all supps except the antifungal (ketoconozole) Also the reason for the calcium he had none in his diet so I felt this was ness. I don't believe it had any magnisium, oops on that one :-(

It's hard to add back supps & do diff. foods @ the same time, I've learned this lesson over & over & still learning. I want to try a multi-vitamin & our dan recommended nu thera w/out vit a & d to start. Also the cod liver oil has soybean oil & we can't do that :-(

To: BTVC-SCD Sent: Thu, May 27, 2010 2:29:33 PMSubject: Re: Re:Re: Ready to give up :-( loosing hope

Hey ,I think it's really, really great that you are doing so much for your son!! I give you all the positive encouragement that I can! I also encourage you to make choices out of hope and faith, and not fear.I think you are doing an excellent job with the diet. If you are concerned about casein with the yogurt, I think the goat milk clears that up pretty good, it's great stuff. Also, I'm curious about your zinc supplement: how much are you administering? Just in case you don't know, it's not good to go over 30 mg total a day or else it starts interfering with the immune system. I would also recommend trying to integrate a multivitamin and fish oil.Also, I saw that your son is only really getting complex carbs at lunch. That can be hard and create behavioral problems - I know with bacteria neurotoxin caused manic depression, that can induce mania real fast (getting carbs from just sugars, and not enough complex

carbs). I would try and get him a little bit more complex carbs here and there more often, he'll probably feel better. Maybe a little steamed zucchini or something? boiled/pureed carrots are really great, but at the beginning some people need them boiled for 4 hours I think.Getting something green into his diet soon would probably also help alot. Perhaps some steamed/pureed spinach or something? Or even a little green beans soon?Also, I'd be careful with the calcium - does it have magnesium with it? if not, it can cause hyperactivity. 2:1 cal/mag ratio is most common, and is pretty much the Freeda ratio. That should be fine, if you really want to get into it 1:1 is a better ratio and you can add a little separate magnesium.Also, I would recommend trying the electrolyte drink, especially if he has had problems with dehydration.Best wishes, keep up the good work, and let us know how it's going!

On Thu, May 27, 2010 at 9:08 AM, Nikki B <motherwarrior2j@ yahoo.com> wrote:

I'm on it Kim, thank u.

From: Kim Mumbower <kkmumbower (AT) gulftel (DOT) com>To: BTVC-SCD@yahoogroup s.comSent: Thu, May 27, 2010 8:29:39 AMSubject: Re:Re: Ready to give up :-( loosing hope

I would join the pecanbread Yahoo group for a while, so you can discover what all the other moms are doing in implementing SCD for their children in the ASD spectrum. Lots of advice and experiences to draw on.

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

There is also a website full of information for kids on SCD dealing with the same issues. www.pecanbread. com

Many of us are also in the pecanbread group. We’re all implementing SCD, but parents with children often need extra support.

Kim M.

SCD 6 years

Sphincter of Oddi dysfunction 6+ years

neurological & spinal deterioration 3+ years

Kim

[Guest guest]

Also the cod liver oil has soybean oil & we can't do that :-( This one doesn't have anything added: http://www.greenpasture.org/retail/?t=products & p=products & a=display & i=1088 Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 75 mg 1x per dayPrednisone 22.5 mg 1x per day

[Guest guest]

Hey :)Yeah, if you want to do zinc, they do come in lower levels if you look around. I've seen a couple, I was taking jarrow 15 mg lately but then stopped because I was taking the Freeda multi and b-complex and getting 30 mg zinc from those.

Also, you can totally get cod liver oil without soybean oil.I agree, adding back in supps and diff foods should be done real carefully. And a multi sounds like a great place to start (and CLO :)Actually, I was thinking, are you feeding him raw avocado? Depending on how messed up the poor guy's gut is and how bad the bacteria levels are, 21 days might actually be too soon. I had to redo intro over a month ago and I still cannot eat raw avocado. I can eat it cooked though. A sure fire way to check is to try cooking it. I bake it at least about 30 mins at 325 degrees, usually longer to make sure it's darn good and cooked, otherwise I can't eat it. I separate it into reasonably small chunks too. Are you keeping a food journal? Do you know when his behavior went south again, and what might have been introduced just before that? It might just be die off, but food journals help alot!

I was surprised how much trouble I was having reintegrating food until I read the GAPS website. I disagree with alot of what they recommend and say, but some of it was very helpful to me especially in understanding. I think the pecanbread people will probably know alot more about that stuff and have more to say about it.

Best wishes!! Glad we can be of help, and keep us updated

 

I hear you laura, & thanku for the encouragement. The zinc he was on 50 mg per day because his blood test said he needed zinc do to low levels & elivated copper. I dunno, I pulled all supps except the antifungal (ketoconozole) Also the reason for the calcium he had none in his diet so I felt this was ness. I don't believe it had any magnisium, oops on that one :-( 

 

It's hard to add back supps  & do diff. foods @ the same time, I've learned this lesson over & over & still learning. I want to try a multi-vitamin & our dan recommended nu thera w/out vit a & d  to start. Also the cod liver oil has soybean oil & we can't do that :-( 

 

To: BTVC-SCD

Sent: Thu, May 27, 2010 2:29:33 PMSubject: Re: Re:Re: Ready to give up :-( loosing hope 

Hey ,I think it's really, really great that you are doing so much for your son!! I give you all  the positive encouragement that I can! I also encourage you to make choices out of hope and faith, and not fear.

I think you are doing an excellent job with the diet. If you are concerned about casein with the yogurt, I think the goat milk clears that up pretty good, it's great stuff. Also, I'm curious about your zinc supplement: how much are you administering? Just in case you don't know, it's not good to go over 30 mg total a day or else it starts interfering with the immune system. I would also recommend trying to integrate a multivitamin and fish oil.

Also, I saw that your son is only really getting complex carbs at lunch. That can be hard and create behavioral problems - I know with bacteria neurotoxin caused manic depression, that can induce mania real fast (getting carbs from just sugars, and not enough complex

carbs). I would try and get him a little bit more complex carbs here and there more often, he'll probably feel better. Maybe a little steamed zucchini or something? boiled/pureed carrots are really great, but at the beginning some people need them boiled for 4 hours I think.

Getting something green into his diet soon would probably also help alot. Perhaps some steamed/pureed spinach or something? Or even a little green beans soon?Also, I'd be careful with the calcium - does it have magnesium with it? if not, it can cause hyperactivity. 2:1 cal/mag ratio is most common, and is pretty much the Freeda ratio. That should be fine, if you really want to get into it 1:1 is a better ratio and you can add a little separate magnesium.

Also, I would recommend trying the electrolyte drink, especially if he has had problems with dehydration.Best wishes, keep up the good work, and let us know how it's going!

On Thu, May 27, 2010 at 9:08 AM, Nikki B <motherwarrior2j@ yahoo.com> wrote:

 

I'm on it Kim, thank u.

From: Kim Mumbower <kkmumbower (AT) gulftel (DOT) com>To: BTVC-SCD@yahoogroup s.com

Sent: Thu, May 27, 2010 8:29:39 AMSubject: Re:Re: Ready to give up :-( loosing hope

 

 

I would join the pecanbread Yahoo group for a while, so you can discover what all the other moms are doing in implementing SCD for their children in the ASD spectrum.  Lots of advice and experiences to draw on.

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

 

There is also a website full of information for kids on SCD dealing with the same issues.  www.pecanbread. com

 

Many of us are also in the pecanbread group.  We’re all implementing SCD, but parents with children often need extra support.

 

Kim M.

SCD 6 years

Sphincter of Oddi dysfunction 6+ years

neurological & spinal deterioration 3+ years

  Kim