Re: My son is unwell and it's so hard to watch

February 2, 2008

Your post made me cry. That's how I felt when Mickie was that old and

saw him slip away and could't stop it.

But your are doing all the right things early. I didn't know any of

these stuff eight years ago. Hang in there, he will start looking

better soon. It takes time, but he will improve. He is still very little.

Zurama

>

> He has been on the following since Jan 7th. He is 2.5 years old.

>

> GFCF - CF since September '07

> Diflucan

> Singulair

> Glutathione Cream daily

> B12 injections every five days, now going to every 3

> Cod Liver Oil

> Vitamin A

> MultiFlora Spectrum Probiotics

> Enzyme Complete DP-IV

> Super Nu Thera

> Vitamin C - 500 mg per day

>

> I just look at him and he seems SO MUCH worse since we started this.

I understand the

> yeast may be acting up and causing crazy behavior but he is unhappy,

unhealthy looking.

> He has dark circles under his very tired eyes. His stimming and

behaviors are just worse

> than ever. My husband and I keep looking at each other and

wondering why it's getting

> worse when we're suppose to be on the right track now.

>

> The past few days he's had white chunks in his stool. Loser than

normal stools, very light

> in color, almost like mustard with dark specs. DAN doc says yeast

does NOT come out in

> poop ... then what is it?

>

> He is on a self restricted diet due to sensory issues and just plain

CARB ADDICTION.

>

> Oh how I wish I could make him better simply by getting him to eat

healthy, nutritious

> foods and NO meds. I would love to take a natural approach but

don't have the knowledge

> or guts to do it. Tonight at dinner I said to my husband that I am

tempted to serve him

> steamed fish, rice and veg every night until he eats - even if he

hunger strikes for a week.

> My NT daughter is such a healthy eater, asking for fish, apples,

chick peas, pears, etc.

>

> I know this post does not really contain any questions, just venting

I guess. I can't believe

> that a little boy so beautiful and perfect to me can be getting

worse, slipping more and

> more into the world of Autism. He did not use to be like this. He

still has a spark but I am

> scared that it is getting dimmer. Everyone who looks at me comments

on how I look

> depressed and I just shrug. This is not the life I envisioned for

my children. I tried so

> hard to have my kids for years and years. I went through hell and

back to get pregnant

> and then to stay pregnant and I just didn't forsee any of this.

>

> Thanks for listening. I am just really scared I am losing my son to

Autism.

>

> gfcfmom

>

February 2, 2008

Look into SCD special carbohydrate diet-- website is pecanbread.com-- my son was a carbo craver and the sugar feeds yeast--- i started with SCD and kept GF CF and it does help heal the gut better and recently started supplements slowly after being SCD diet-- very healthy-- read about it ..yahoo group is pecanbread.com and many parents are here to support....your child will get better with these efforts-- 13 years ago my son did not have all this information but i wish we had -- now slowly getting better -- slowly...but you are doing a great job and you dont want to look back and regret you didnt try more...keep going...every little bit helps! Zurama wrote: Your post made me cry. That's how I felt when Mickie was that old andsaw him slip away and could't stop it.But your are doing all the right things early. I didn't know any ofthese stuff eight years ago. Hang in there, he will start lookingbetter soon. It takes time, but he will improve. He is still very little.Zurama>> He has been on the following since Jan 7th. He is 2.5 years old.> > GFCF - CF since September '07> Diflucan> Singulair > Glutathione Cream daily> B12 injections every five days, now going to every 3> Cod Liver Oil> Vitamin A> MultiFlora Spectrum Probiotics> Enzyme Complete

DP-IV> Super Nu Thera> Vitamin C - 500 mg per day> > I just look at him and he seems SO MUCH worse since we started this.I understand the > yeast may be acting up and causing crazy behavior but he is unhappy,unhealthy looking. > He has dark circles under his very tired eyes. His stimming andbehaviors are just worse > than ever. My husband and I keep looking at each other andwondering why it's getting > worse when we're suppose to be on the right track now.> > The past few days he's had white chunks in his stool. Loser thannormal stools, very light > in color, almost like mustard with dark specs. DAN doc says yeastdoes NOT come out in > poop ... then what is it?> > He is on a self restricted diet due to sensory issues and just plainCARB ADDICTION.> > Oh how I wish I could make him better simply by getting him to eathealthy,

nutritious > foods and NO meds. I would love to take a natural approach butdon't have the knowledge > or guts to do it. Tonight at dinner I said to my husband that I amtempted to serve him > steamed fish, rice and veg every night until he eats - even if hehunger strikes for a week. > My NT daughter is such a healthy eater, asking for fish, apples,chick peas, pears, etc. > > I know this post does not really contain any questions, just ventingI guess. I can't believe > that a little boy so beautiful and perfect to me can be gettingworse, slipping more and > more into the world of Autism. He did not use to be like this. Hestill has a spark but I am > scared that it is getting dimmer. Everyone who looks at me commentson how I look > depressed and I just shrug. This is not the life I envisioned formy children. I tried so > hard to have my kids for years and years. I

went through hell andback to get pregnant > and then to stay pregnant and I just didn't forsee any of this. > > Thanks for listening. I am just really scared I am losing my son toAutism.> > gfcfmom>

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February 2, 2008

Hi, My son was pretty bad off at 2.5 yo too.We started biomed and diet at that time.And yes when yeast and bacteria over grow then you will see some bizarre behavior.So you have anti bacterials in place so when the yeast goes down it doesn't take over?That happens alot around here so I rotate a few naturals inc.Berberine complex. Also we have had SO many ups and downs and sometimes had to start over.It can be a very bumpy ride but well worth it.My son is NOT recovered BUT better then he once was,especially at 2.5 yo.He seemed very affected at that age. Hang in there.Ask questions.Make changes if u have too. Good Luck!Zurama wrote: Your post made me cry. That's how I felt when Mickie was that old andsaw him slip away and could't stop it.But your are doing all the right things early. I didn't know any ofthese stuff eight years ago. Hang in there, he will start lookingbetter soon. It takes time, but he will improve. He is still very little.Zurama>> He has been on the following since Jan 7th. He is 2.5 years old.> > GFCF - CF since September '07> Diflucan> Singulair > Glutathione Cream daily> B12 injections every five days, now going to

every 3> Cod Liver Oil> Vitamin A> MultiFlora Spectrum Probiotics> Enzyme Complete DP-IV> Super Nu Thera> Vitamin C - 500 mg per day> > I just look at him and he seems SO MUCH worse since we started this.I understand the > yeast may be acting up and causing crazy behavior but he is unhappy,unhealthy looking. > He has dark circles under his very tired eyes. His stimming andbehaviors are just worse > than ever. My husband and I keep looking at each other andwondering why it's getting > worse when we're suppose to be on the right track now.> > The past few days he's had white chunks in his stool. Loser thannormal stools, very light > in color, almost like mustard with dark specs. DAN doc says yeastdoes NOT come out in > poop ... then what is it?> > He is on a self restricted diet due to sensory issues and just plainCARB

ADDICTION.> > Oh how I wish I could make him better simply by getting him to eathealthy, nutritious > foods and NO meds. I would love to take a natural approach butdon't have the knowledge > or guts to do it. Tonight at dinner I said to my husband that I amtempted to serve him > steamed fish, rice and veg every night until he eats - even if hehunger strikes for a week. > My NT daughter is such a healthy eater, asking for fish, apples,chick peas, pears, etc. > > I know this post does not really contain any questions, just ventingI guess. I can't believe > that a little boy so beautiful and perfect to me can be gettingworse, slipping more and > more into the world of Autism. He did not use to be like this. Hestill has a spark but I am > scared that it is getting dimmer. Everyone who looks at me commentson how I look > depressed and I just shrug. This is not

the life I envisioned formy children. I tried so > hard to have my kids for years and years. I went through hell andback to get pregnant > and then to stay pregnant and I just didn't forsee any of this. > > Thanks for listening. I am just really scared I am losing my son toAutism.> > gfcfmom> "To accomplish great things, we must not only act, wemust dream; not only plan but also believe."

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February 2, 2008

As you are moving toward SCD, eliminate sugar and soy. In addition, try to sneak cooked pureed veggies into healthy protein like meatballs, hamburger patties, omelettes and chicken salad as much as possible. Also, don't forget about healthy fats like olive oil and coconut oil. These foods will leave your son feeling satisfied and less carb addicted. Use rice if you absolutely have to but do not rely on it or he will just replace one addiction w/another. Best of luck.

- Dana

-----Original Message-----From: mb12 valtrex [mailto:mb12 valtrex ]On Behalf Of ann andressSent: Saturday, February 02, 2008 8:12 PMTo: mb12 valtrex Subject: Re: Re: My son is unwell and it's so hard to watch

Look into SCD special carbohydrate diet-- website is pecanbread.com-- my son was a carbo craver and the sugar feeds yeast--- i started with SCD and kept GF CF and it does help heal the gut better and recently started supplements slowly after being SCD diet-- very healthy-- read about it ..yahoo group is pecanbread.com and many parents are here to support....your child will get better with these efforts-- 13 years ago my son did not have all this information but i wish we had -- now slowly getting better -- slowly...but you are doing a great job and you dont want to look back and regret you didnt try more...keep going...every little bit helps! Zurama <autismtookmickiegmail> wrote:

Your post made me cry. That's how I felt when Mickie was that old andsaw him slip away and could't stop it.But your are doing all the right things early. I didn't know any ofthese stuff eight years ago. Hang in there, he will start lookingbetter soon. It takes time, but he will improve. He is still very little.Zurama>> He has been on the following since Jan 7th. He is 2.5 years old.> > GFCF - CF since September '07> Diflucan> Singulair > Glutathione Cream daily> B12 injections every five days, now going to every 3> Cod Liver Oil> Vitamin A> MultiFlora Spectrum Probiotics> Enzyme Complete DP-IV> Super Nu Thera> Vitamin C - 500 mg per day> > I just look at him and he seems SO MUCH worse since we started this.I understand the > yeast may be acting up and causing crazy behavior but he is unhappy,unhealthy looking. > He has dark circles under his very tired eyes. His stimming andbehaviors are just worse > than ever. My husband and I keep looking at each other andwondering why it's getting > worse when we're suppose to be on the right track now.> > The past few days he's had white chunks in his stool. Loser thannormal stools, very light > in color, almost like mustard with dark specs. DAN doc says yeastdoes NOT come out in > poop ... then what is it?> > He is on a self restricted diet due to sensory issues and just plainCARB ADDICTION.> > Oh how I wish I could make him better simply by getting him to eathealthy, nutritious > foods and NO meds. I would love to take a natural approach butdon't have the knowledge > or guts to do it. Tonight at dinner I said to my husband that I amtempted to serve him > steamed fish, rice and veg every night until he eats - even if hehunger strikes for a week. > My NT daughter is such a healthy eater, asking for fish, apples,chick peas, pears, etc. > > I know this post does not really contain any questions, just ventingI guess. I can't believe > that a little boy so beautiful and perfect to me can be gettingworse, slipping more and > more into the world of Autism. He did not use to be like this. Hestill has a spark but I am > scared that it is getting dimmer. Everyone who looks at me commentson how I look > depressed and I just shrug. This is not the life I envisioned formy children. I tried so > hard to have my kids for years and years. I went through hell andback to get pregnant > and then to stay pregnant and I just didn't forsee any of this. > > Thanks for listening. I am just really scared I am losing my son toAutism.> > gfcfmom>

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February 2, 2008

Please also study the low oxalate diet information at http://www.lowoxalate.info/ This is the one diet that helped my daughter the most. I didn't notice really any improvements to speak of on GFCF (though we're still sticking to it), and SCD actually worsened her problems because of the high oxalate levels in many of the recipes. You can actually do low oxalate and SCD together, but it is more challenging. Not all kids have oxalate problems, but the stools you describe sound alot like oxalates. There's also a groups you can join to learn more: Trying_Low_Oxalates Did your child have an OAT showing high oxalates? There are alot of other symptoms to look for, just check out that website that I referred to for all the information. I know

it's hard to watch your child get worse when you're trying so hard. Just keep looking and you'll find the answers. It took me several months to realize that I needed to keep looking for answers. And please, talk to your own doctor about the trouble you're having. I know how you feel, I've been there (and still am some days). Take care, Susie gfcfmom wrote: He has been on the following since Jan 7th. He is 2.5 years

old.GFCF - CF since September '07DiflucanSingulair Glutathione Cream dailyB12 injections every five days, now going to every 3Cod Liver OilVitamin AMultiFlora Spectrum ProbioticsEnzyme Complete DP-IVSuper Nu TheraVitamin C - 500 mg per dayI just look at him and he seems SO MUCH worse since we started this. I understand the yeast may be acting up and causing crazy behavior but he is unhappy, unhealthy looking. He has dark circles under his very tired eyes. His stimming and behaviors are just worse than ever. My husband and I keep looking at each other and wondering why it's getting worse when we're suppose to be on the right track now.The past few days he's had white chunks in his stool. Loser than normal stools, very light in color, almost like mustard with dark specs. DAN doc says yeast does NOT come out in poop ... then what is it?He is on a self restricted diet due to sensory

issues and just plain CARB ADDICTION.Oh how I wish I could make him better simply by getting him to eat healthy, nutritious foods and NO meds. I would love to take a natural approach but don't have the knowledge or guts to do it. Tonight at dinner I said to my husband that I am tempted to serve him steamed fish, rice and veg every night until he eats - even if he hunger strikes for a week. My NT daughter is such a healthy eater, asking for fish, apples, chick peas, pears, etc. I know this post does not really contain any questions, just venting I guess. I can't believe that a little boy so beautiful and perfect to me can be getting worse, slipping more and more into the world of Autism. He did not use to be like this. He still has a spark but I am scared that it is getting dimmer. Everyone who looks at me comments on how I look depressed and I just shrug. This is not the life I envisioned for my children. I tried so hard

to have my kids for years and years. I went through hell and back to get pregnant and then to stay pregnant and I just didn't forsee any of this. Thanks for listening. I am just really scared I am losing my son to Autism.gfcfmom

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February 2, 2008

Just a thought here…..is he on the Singulair for

asthma or the autism?? I have had some patients do worse on the Singulair. Not

what we had hoped for or expected, but unfortunately it is not for all. Can

really affect moods. I would suggest stopping that for now.

Re the yeast NOT coming out in stools…I think you have

been given incorrect information. How else will it come out from the bowel???

Changes in stool are a good sign that you ARE killing off yeast. Hang in

there. To make it a bit easier for him you might want to try giving some

charcoal. About 250 mg or maybe even less will do it. Give it a few hours

after the Diflucan. And then give no other supplements for another hour or 2

after the charcoal. If there are a lot of toxins around from the dying yeast,

the charcoal will help to mop them up and make him feel physically better.

Hang in there. As the others have said to you…you are

starting early with him. He will get better. It’s a marathon, not a

sprint. And for that reason it can be hard, but all worth it in the long run. I’m

thinking positively for you!!!!

February 2, 2008

I just wanted to comment on the Vitamin A and Cod liver oil. I had my

3 year old on both for about a month daily. I noticed two days ago

that her hair was starting to come out in clumps. I looked it up and

it's the Vitamin A. If your son's soles, palms and around his

nostrils are orange or yellow, take the Vitamin A away. My daughter

has all of these symtoms. He could have Vitamin A toxicity. It is

reversed by simply taking it away.

I

> >

> > He has been on the following since Jan 7th. He is 2.5 years old.

> >

> > GFCF - CF since September '07

> > Diflucan

> > Singulair

> > Glutathione Cream daily

> > B12 injections every five days, now going to every 3

> > Cod Liver Oil

> > Vitamin A

> > MultiFlora Spectrum Probiotics

> > Enzyme Complete DP-IV

> > Super Nu Thera

> > Vitamin C - 500 mg per day

> >

> > I just look at him and he seems SO MUCH worse since we started

this.

> I understand the

> > yeast may be acting up and causing crazy behavior but he is

unhappy,

> unhealthy looking.

> > He has dark circles under his very tired eyes. His stimming and

> behaviors are just worse

> > than ever. My husband and I keep looking at each other and

> wondering why it's getting

> > worse when we're suppose to be on the right track now.

> >

> > The past few days he's had white chunks in his stool. Loser than

> normal stools, very light

> > in color, almost like mustard with dark specs. DAN doc says yeast

> does NOT come out in

> > poop ... then what is it?

> >

> > He is on a self restricted diet due to sensory issues and just

plain

> CARB ADDICTION.

> >

> > Oh how I wish I could make him better simply by getting him to eat

> healthy, nutritious

> > foods and NO meds. I would love to take a natural approach but

> don't have the knowledge

> > or guts to do it. Tonight at dinner I said to my husband that I am

> tempted to serve him

> > steamed fish, rice and veg every night until he eats - even if he

> hunger strikes for a week.

> > My NT daughter is such a healthy eater, asking for fish, apples,

> chick peas, pears, etc.

> >

> > I know this post does not really contain any questions, just

venting

> I guess. I can't believe

> > that a little boy so beautiful and perfect to me can be getting

> worse, slipping more and

> > more into the world of Autism. He did not use to be like this. He

> still has a spark but I am

> > scared that it is getting dimmer. Everyone who looks at me

comments

> on how I look

> > depressed and I just shrug. This is not the life I envisioned for

> my children. I tried so

> > hard to have my kids for years and years. I went through hell and

> back to get pregnant

> > and then to stay pregnant and I just didn't forsee any of this.

> >

> > Thanks for listening. I am just really scared I am losing my son

to

> Autism.

> >

> > gfcfmom

> >

>

> " To accomplish great things, we must not only act, we

> must dream; not only plan but also believe. "

>

> ---------------------------------

> Be smarter than spam. See how smart SpamGuard is at giving junk

email the boot with the All-new Yahoo! Mail

>

February 2, 2008

I´m not MD nor any kind of practitioner, just a father of a 4 yo

with ASD who is doing wonderfully now, but was like you child not

long ago when his DAN prescribed almost the same stuff.

IT WAS CRAZY!!!! I regret so much we did that!!!

Probably many DAN´s rx the same as starting point and many children

do great with such list of sups and meds at once but I doubt it.

I´ve also seen my child getting worse for some weeks and then I

decided to stop.

How can they or you know what is doing what to your child?

My child reacted adversely to CLO, Vit A, SNT, MeB12 and other

probiotics not in your list.

Nothing is granted to be good nor at least inocuos to our children.

What I did then was:

Keep diet, antifungal, milk thistle (not in your list) for long

enough until we made sure he was startinng to feel better.

Then I did comprehensive stool test including A toxine of Clostidium

difficile, and treated it for 6 weeks with flagyl.

My son kept getting better.

Also viral and aso test, that lead us to antiviral and abx, both on

long term basis.

Only after that I started to add sups, starting with antioxidant and

detox ones, including Vit C, CoQ10, Glutation, and carnosine.

Also Pro-Bio Gold, my son did badly with culturelle, three lac and

other one I don´t remember.

One at a time every 5 days.

At last I´ve added Vit B complex, regular dose, not mega dose, MeB12

oral, multi minerals, taurine, lithium, glutamine, etc.

Now I know I won´t go back to Vit A, mega dose of MeB12, enzime DPP-

IV, CLO, SNT.

My son never been better and keeps improving, I think the clue for

him was to detect and treat all the bugs. Later he could tolerate

better the rest and also not need that many.

Yes, we have another MD, of course...

Follow your gut!!!

>

> He has been on the following since Jan 7th. He is 2.5 years old.

>

> GFCF - CF since September '07

> Diflucan

> Singulair

> Glutathione Cream daily

> B12 injections every five days, now going to every 3

> Cod Liver Oil

> Vitamin A

> MultiFlora Spectrum Probiotics

> Enzyme Complete DP-IV

> Super Nu Thera

> Vitamin C - 500 mg per day

>

> I just look at him and he seems SO MUCH worse since we started

this. I understand the

> yeast may be acting up and causing crazy behavior but he is

unhappy, unhealthy looking.

> He has dark circles under his very tired eyes. His stimming and

behaviors are just worse

> than ever. My husband and I keep looking at each other and

wondering why it's getting

> worse when we're suppose to be on the right track now.

>

> The past few days he's had white chunks in his stool. Loser than

normal stools, very light

> in color, almost like mustard with dark specs. DAN doc says yeast

does NOT come out in

> poop ... then what is it?

>

> He is on a self restricted diet due to sensory issues and just

plain CARB ADDICTION.

>

> Oh how I wish I could make him better simply by getting him to eat

healthy, nutritious

> foods and NO meds. I would love to take a natural approach but

don't have the knowledge

> or guts to do it. Tonight at dinner I said to my husband that I

am tempted to serve him

> steamed fish, rice and veg every night until he eats - even if he

hunger strikes for a week.

> My NT daughter is such a healthy eater, asking for fish, apples,

chick peas, pears, etc.

>

> I know this post does not really contain any questions, just

venting I guess. I can't believe

> that a little boy so beautiful and perfect to me can be getting

worse, slipping more and

> more into the world of Autism. He did not use to be like this.

He still has a spark but I am

> scared that it is getting dimmer. Everyone who looks at me

comments on how I look

> depressed and I just shrug. This is not the life I envisioned for

my children. I tried so

> hard to have my kids for years and years. I went through hell and

back to get pregnant

> and then to stay pregnant and I just didn't forsee any of this.

>

> Thanks for listening. I am just really scared I am losing my son

to Autism.

>

> gfcfmom

>

February 2, 2008

---

Oh My G-d! I just finished reading your post. It is my life.

An exact carbon copy. I am in a similar position with the only

difference that I am able to get my son to eat more foods.

we started the GFCF diet in July. My husband was willing to give it 9

months. We had gone to a DAN dr. and after two years my husband was

finally on board. We have seen these glimpes of what is possible but

then have a backlash of bad days, new stimming behavior, more

withdrawn and I truly feel like my time is running out. I continue to

question what went well on that one day and what didn't go well on the

others, Was it the specific supplements-are they working.

My son too has dark circles under his eyes. I look at him and am

worried and keep asking myself, what am I doing and will he ever get

better.

I don't know how much more of a restricted diet I can do for my son.

I don't have any answers for you. I am still searching myself.

I guess I wanted you to know that there is someone else who

unfortunately has had an experience too similar to yours. Even with

the difficulty getting pregnant. I lay in bed for 6 months to have my

son. He was our dream come true. Now I feel like my dream is fading

away and I am so worried what lies ahead.I don't sleep very well

anymore and spend most of my time thinking about what I can do....

I sometimes feel like I'm neglecting my younger daughter and I know

I'm neglecting my marriage and myself.

Well-I just wanted to let you know that you aren't alone.

Joy

In mb12 valtrex , ann andress wrote:

>

> Look into SCD special carbohydrate diet-- website is

pecanbread.com-- my son was a carbo craver and the sugar feeds

yeast--- i started with SCD and kept GF CF and it does help heal the

gut better and recently started supplements slowly after being SCD

diet-- very healthy-- read about it ..yahoo group is pecanbread.com

and many parents are here to support....your child will get better

with these efforts-- 13 years ago my son did not have all this

information but i wish we had -- now slowly getting better --

slowly...but you are doing a great job and you dont want to look back

and regret you didnt try more...keep going...every little bit helps!

>

> Zurama wrote: Your post made me cry.

That's how I felt when Mickie was that old and

> saw him slip away and could't stop it.

>

> But your are doing all the right things early. I didn't know any of

> these stuff eight years ago. Hang in there, he will start looking

> better soon. It takes time, but he will improve. He is still very

little.

>

> Zurama

>

> >

> > He has been on the following since Jan 7th. He is 2.5 years old.

> >

> > GFCF - CF since September '07

> > Diflucan

> > Singulair

> > Glutathione Cream daily

> > B12 injections every five days, now going to every 3

> > Cod Liver Oil

> > Vitamin A

> > MultiFlora Spectrum Probiotics

> > Enzyme Complete DP-IV

> > Super Nu Thera

> > Vitamin C - 500 mg per day

> >

> > I just look at him and he seems SO MUCH worse since we started this.

> I understand the

> > yeast may be acting up and causing crazy behavior but he is unhappy,

> unhealthy looking.

> > He has dark circles under his very tired eyes. His stimming and

> behaviors are just worse

> > than ever. My husband and I keep looking at each other and

> wondering why it's getting

> > worse when we're suppose to be on the right track now.

> >

> > The past few days he's had white chunks in his stool. Loser than

> normal stools, very light

> > in color, almost like mustard with dark specs. DAN doc says yeast

> does NOT come out in

> > poop ... then what is it?

> >

> > He is on a self restricted diet due to sensory issues and just plain

> CARB ADDICTION.

> >

> > Oh how I wish I could make him better simply by getting him to eat

> healthy, nutritious

> > foods and NO meds. I would love to take a natural approach but

> don't have the knowledge

> > or guts to do it. Tonight at dinner I said to my husband that I am

> tempted to serve him

> > steamed fish, rice and veg every night until he eats - even if he

> hunger strikes for a week.

> > My NT daughter is such a healthy eater, asking for fish, apples,

> chick peas, pears, etc.

> >

> > I know this post does not really contain any questions, just venting

> I guess. I can't believe

> > that a little boy so beautiful and perfect to me can be getting

> worse, slipping more and

> > more into the world of Autism. He did not use to be like this. He

> still has a spark but I am

> > scared that it is getting dimmer. Everyone who looks at me comments

> on how I look

> > depressed and I just shrug. This is not the life I envisioned for

> my children. I tried so

> > hard to have my kids for years and years. I went through hell and

> back to get pregnant

> > and then to stay pregnant and I just didn't forsee any of this.

> >

> > Thanks for listening. I am just really scared I am losing my son to

> Autism.

> >

> > gfcfmom

> >

>

> ---------------------------------

> Be a better friend, newshound, and know-it-all with Yahoo! Mobile.

Try it now.

>

February 2, 2008

Both of your posts make me feel so sad. I can totally empathize with both of you as I too went thru this exact same thing. I STILL look at my son every single day and wonder how such a physically perfect little boy can have something so terribly wrong with him. My son was diagnosed 3 1/2 years ago, at 22 mos. old, and after all this work he is STILL nonverbal and still very autistic. But there is hope. Although he hasn't gained language (YET) he has gained in other ways and your children will too. Try not to see them as only being autistic and allow yourself to enjoy them for who they are. Took me a long time to get to that point, but it does come.

Re: My son is unwell and it's so hard to watch

---Oh My G-d! I just finished reading your post. It is my life.An exact carbon copy. I am in a similar position with the onlydifference that I am able to get my son to eat more foods. we started the GFCF diet in July. My husband was willing to give it 9months. We had gone to a DAN dr. and after two years my husband wasfinally on board. We have seen these glimpes of what is possible butthen have a backlash of bad days, new stimming behavior, morewithdrawn and I truly feel like my time is running out. I continue toquestion what went well on that one day and what didn't go well on theothers, Was it the specific supplements-are they working.My son too has dark circles under his eyes. I look at him and amworried and keep asking myself, what am I doing and will he ever getbetter. I don't know how much more of a restricted diet I can do for my son. I don't have any answers for you. I am still searching myself. I guess I wanted you to know that there is someone else whounfortunately has had an experience too similar to yours. Even withthe difficulty getting pregnant. I lay in bed for 6 months to have myson. He was our dream come true. Now I feel like my dream is fadingaway and I am so worried what lies ahead.I don't sleep very wellanymore and spend most of my time thinking about what I can do....I sometimes feel like I'm neglecting my younger daughter and I knowI'm neglecting my marriage and myself.Well-I just wanted to let you know that you aren't alone.JoyIn mb12 valtrex , ann andress wrote:>> Look into SCD special carbohydrate diet-- website ispecanbread.com-- my son was a carbo craver and the sugar feedsyeast--- i started with SCD and kept GF CF and it does help heal thegut better and recently started supplements slowly after being SCDdiet-- very healthy-- read about it ..yahoo group is pecanbread.comand many parents are here to support....your child will get betterwith these efforts-- 13 years ago my son did not have all thisinformation but i wish we had -- now slowly getting better --slowly...but you are doing a great job and you dont want to look backand regret you didnt try more...keep going...every little bit helps! > > Zurama wrote: Your post made me cry.That's how I felt when Mickie was that old and> saw him slip away and could't stop it.> > But your are doing all the right things early. I didn't know any of> these stuff eight years ago. Hang in there, he will start looking> better soon. It takes time, but he will improve. He is still verylittle.> > Zurama> > >> > He has been on the following since Jan 7th. He is 2.5 years old.> > > > GFCF - CF since September '07> > Diflucan> > Singulair > > Glutathione Cream daily> > B12 injections every five days, now going to every 3> > Cod Liver Oil> > Vitamin A> > MultiFlora Spectrum Probiotics> > Enzyme Complete DP-IV> > Super Nu Thera> > Vitamin C - 500 mg per day> > > > I just look at him and he seems SO MUCH worse since we started this.> I understand the > > yeast may be acting up and causing crazy behavior but he is unhappy,> unhealthy looking. > > He has dark circles under his very tired eyes. His stimming and> behaviors are just worse > > than ever. My husband and I keep looking at each other and> wondering why it's getting > > worse when we're suppose to be on the right track now.> > > > The past few days he's had white chunks in his stool. Loser than> normal stools, very light > > in color, almost like mustard with dark specs. DAN doc says yeast> does NOT come out in > > poop ... then what is it?> > > > He is on a self restricted diet due to sensory issues and just plain> CARB ADDICTION.> > > > Oh how I wish I could make him better simply by getting him to eat> healthy, nutritious > > foods and NO meds. I would love to take a natural approach but> don't have the knowledge > > or guts to do it. Tonight at dinner I said to my husband that I am> tempted to serve him > > steamed fish, rice and veg every night until he eats - even if he> hunger strikes for a week. > > My NT daughter is such a healthy eater, asking for fish, apples,> chick peas, pears, etc. > > > > I know this post does not really contain any questions, just venting> I guess. I can't believe > > that a little boy so beautiful and perfect to me can be getting> worse, slipping more and > > more into the world of Autism. He did not use to be like this. He> still has a spark but I am > > scared that it is getting dimmer. Everyone who looks at me comments> on how I look > > depressed and I just shrug. This is not the life I envisioned for> my children. I tried so > > hard to have my kids for years and years. I went through hell and> back to get pregnant > > and then to stay pregnant and I just didn't forsee any of this. > > > > Thanks for listening. I am just really scared I am losing my son to> Autism.> > > > gfcfmom> >> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.>

February 2, 2008

I've gone through the same thing with my son and what I learned was, you should NOT detox too fast. That's the thing I like about Yasko--she emphasizes supporting organs during detox and trying to help with overall neurologic inflammation. The best thing I did was back off, start everything at 1/4 the dose that was recommended and watching for reactions. There are so many things that could be happening to your son but he may not be able to handle such all that supplementation up front. An amazing veteran Mom told me once that when her kids react poorly, it just keeps her going because she knows she's hitting something and, although it may not be the right supplement at the right time, she'll eventually get it right. Diflucan was too much detox for my boy and I still haven't gotten back the boy I had. It was too much, too soon. MB12 was too much for him too, he had great gains initially and then went totally bonkers--not the right time

but I will revisit that again. I also noticed that my son does not handle die off that well so I thought it was likely his liver wasn't processing toxins all that well--that's when I started Liver Life for liver support. Of anything I have tried, I have had unbelievable gains with Liver Life--just decongesting the liver can help a ton. You'll get it right, we all will, eventually. Beth Handley wrote: Both of your posts make me feel so sad. I can totally empathize

with both of you as I too went thru this exact same thing. I STILL look at my son every single day and wonder how such a physically perfect little boy can have something so terribly wrong with him. My son was diagnosed 3 1/2 years ago, at 22 mos. old, and after all this work he is STILL nonverbal and still very autistic. But there is hope. Although he hasn't gained language (YET) he has gained in other ways and your children will too. Try not to see them as only being autistic and allow yourself to enjoy them for who they are. Took me a long time to get to that point, but it does come. Re: My son is unwell and it's so hard to watch ---Oh My G-d! I just finished reading your post. It is my life.An exact carbon copy. I am in a similar position with the onlydifference that I am able to get my son to eat more foods. we started the GFCF diet in July. My husband was willing to give it 9months. We had gone to a DAN dr. and after two years my husband wasfinally on board. We have seen these glimpes of what is possible butthen have a backlash of bad days, new stimming

behavior, morewithdrawn and I truly feel like my time is running out. I continue toquestion what went well on that one day and what didn't go well on theothers, Was it the specific supplements-are they working.My son too has dark circles under his eyes. I look at him and amworried and keep asking myself, what am I doing and will he ever getbetter. I don't know how much more of a restricted diet I can do for my son. I don't have any answers for you. I am still searching myself. I guess I wanted you to know that there is someone else whounfortunately has had an experience too similar to yours. Even withthe difficulty getting pregnant. I lay in bed for 6 months to have myson. He was our dream come true. Now I feel like my dream is fadingaway and I am so worried what lies ahead.I don't sleep very wellanymore and spend most of my time thinking about what I can do....I sometimes feel like I'm neglecting my

younger daughter and I knowI'm neglecting my marriage and myself.Well-I just wanted to let you know that you aren't alone.JoyIn mb12 valtrex , ann andress wrote:>> Look into SCD special carbohydrate diet-- website ispecanbread.com-- my son was a carbo craver and the sugar feedsyeast--- i started with SCD and kept GF CF and it does help heal thegut better and recently started supplements slowly after being SCDdiet-- very healthy-- read about it ..yahoo group is pecanbread.comand many parents are here to support....your child will get betterwith these efforts-- 13 years ago my son did not have all thisinformation but i wish we had -- now slowly getting better --slowly...but you are doing a great job and you dont want to look backand regret you didnt try more...keep going...every little bit helps!

> > Zurama wrote: Your post made me cry.That's how I felt when Mickie was that old and> saw him slip away and could't stop it.> > But your are doing all the right things early. I didn't know any of> these stuff eight years ago. Hang in there, he will start looking> better soon. It takes time, but he will improve. He is still verylittle.> > Zurama> > >> > He has been on the following since Jan 7th. He is 2.5 years old.> > > > GFCF - CF since September '07> > Diflucan> > Singulair > > Glutathione Cream daily> > B12 injections every five days, now going to every 3> > Cod Liver Oil> > Vitamin A> > MultiFlora Spectrum

Probiotics> > Enzyme Complete DP-IV> > Super Nu Thera> > Vitamin C - 500 mg per day> > > > I just look at him and he seems SO MUCH worse since we started this.> I understand the > > yeast may be acting up and causing crazy behavior but he is unhappy,> unhealthy looking. > > He has dark circles under his very tired eyes. His stimming and> behaviors are just worse > > than ever. My husband and I keep looking at each other and> wondering why it's getting > > worse when we're suppose to be on the right track now.> > > > The past few days he's had white chunks in his stool. Loser than> normal stools, very light > > in color, almost like mustard with dark specs. DAN doc says yeast> does NOT come out in > > poop ... then what is it?> > > > He is on a self restricted diet due to sensory

issues and just plain> CARB ADDICTION.> > > > Oh how I wish I could make him better simply by getting him to eat> healthy, nutritious > > foods and NO meds. I would love to take a natural approach but> don't have the knowledge > > or guts to do it. Tonight at dinner I said to my husband that I am> tempted to serve him > > steamed fish, rice and veg every night until he eats - even if he> hunger strikes for a week. > > My NT daughter is such a healthy eater, asking for fish, apples,> chick peas, pears, etc. > > > > I know this post does not really contain any questions, just venting> I guess. I can't believe > > that a little boy so beautiful and perfect to me can be getting> worse, slipping more and > > more into the world of Autism. He did not use to be like this. He> still has a spark but I am > >

scared that it is getting dimmer. Everyone who looks at me comments> on how I look > > depressed and I just shrug. This is not the life I envisioned for> my children. I tried so > > hard to have my kids for years and years. I went through hell and> back to get pregnant > > and then to stay pregnant and I just didn't forsee any of this. > > > > Thanks for listening. I am just really scared I am losing my son to> Autism.> > > > gfcfmom> >> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.>

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February 2, 2008

Hi. Its so hard as aparent to watch our child get worse when we live to make them even a tiny bit better. We all want our children to have the best chance at as normal a life as possible. My son is 20 months old and I was reading over what you Dan Dr has your son on and some of it seems like super nu thera and the 500 mg of vitamin c seems high. All children are different and it seems some Dan Dr's try out the same things on these children before knowing if they are needed. I do feel CLO is a good supplement. Although too much vitamin A can be toxic as its a fat soluable vitamin and stores in the body for long periods of time. I will list what my son is currently on and he has done great

GF/CF

Nordic Naturals cod liver oil 1/2 tsp-every other day

Houston AFP Peptizyde and No-fenol- 1/2 recommended dose because of age

Kid Calm that has low dose magnesium, zinc and vitamin c - before bedtime

biotin and grape fruit seed extract for yeastKirkmans pro bio gold - every other dayKirkmans colostrum- 1/4 tsp first thing in the morning

very low dose vitamin b-12 with folic acid at dinner to help iron absorption ( slightly anemic )

enfamil poly visol regular vitamins without fluoride

2 servings enfamil next step soy toddler formula ( because of milk/dairy free )

low dose taurine

Glutathione cream

kirkmans multi mineral complex pro support ( isnt super high dose )

I then rotate calcium and some b-complex here and there but not on a daily basis.

What I see with most of the supplements Dan Dr's suggest are super high doses. Doesnt make sense to me unless your child tests very low. Also some ASD children are over methylators and dont need the b-12 shots or high dose b-12. It actually can make them worse. Same with glutathione. If a child is not low glutathione then giving it can make a bad reaction from mild to severe. I added all the above one at a time besides his poly visol and formula. My son also gets very hyper with epsom salt baths. He is a high sulpher kid I suppose and doesnt benefit from this. Over all I am also not a Dr but it seems what you might want to do is take him off his supplements for 2 or 3 days and add one at a time. Then you will know what he isnt tolerating. We took my son off most of his supplements for 4 days because he had a blood test. Holey WOW he was stimming

and crying and SOOO back to the way he was 3 months ago. There are so many things out there that people claim fixed there child.. like DMG and TMG etc etc. Be careful when trying one of these so called wonder supplements. They are not for every child and if you decide to try something new add it slowly and low dose. I wish you all the best and hope you find the things that your son needs to progress. He is probably reacting to something he is on and not tolerating well. You will get there just keep trying and remember Moms know there child best ( and Dad's ) its good to have a Dr but speak up if you feel something isnt working.

Re: My son is unwell and it's so hard to watch

I´m not MD nor any kind of practitioner, just a father of a 4 yo with ASD who is doing wonderfully now, but was like you child not long ago when his DAN prescribed almost the same stuff.IT WAS CRAZY!!!! I regret so much we did that!!!Probably many DAN´s rx the same as starting point and many children do great with such list of sups and meds at once but I doubt it.I´ve also seen my child getting worse for some weeks and then I decided to stop.How can they or you know what is doing what to your child?My child reacted adversely to CLO, Vit A, SNT, MeB12 and other probiotics not in your list. Nothing is granted to be good nor at least inocuos to our children.What I did then was:Keep diet, antifungal, milk thistle (not in your list) for long enough until we made sure he was startinng to feel better.Then I did comprehensive stool test including A toxine of Clostidium difficile, and treated

it for 6 weeks with flagyl. My son kept getting better.Also viral and aso test, that lead us to antiviral and abx, both on long term basis.Only after that I started to add sups, starting with antioxidant and detox ones, including Vit C, CoQ10, Glutation, and carnosine. Also Pro-Bio Gold, my son did badly with culturelle, three lac and other one I don´t remember.One at a time every 5 days.At last I´ve added Vit B complex, regular dose, not mega dose, MeB12 oral, multi minerals, taurine, lithium, glutamine, etc.Now I know I won´t go back to Vit A, mega dose of MeB12, enzime DPP-IV, CLO, SNT.My son never been better and keeps improving, I think the clue for him was to detect and treat all the bugs. Later he could tolerate better the rest and also not need that many.Yes, we have another MD, of course...Follow your gut!!!>> He has been on the following since Jan 7th. He is 2.5 years old.> > GFCF - CF since September '07> Diflucan> Singulair > Glutathione Cream daily> B12 injections every five days, now going to every 3> Cod Liver Oil> Vitamin A> MultiFlora Spectrum Probiotics> Enzyme Complete DP-IV> Super Nu Thera> Vitamin C - 500 mg per day> > I just look at him and he seems SO MUCH worse since we started this. I understand the > yeast may be acting up and causing crazy behavior but he is unhappy, unhealthy looking. > He has dark circles under his very tired eyes. His stimming and behaviors are just worse > than ever. My husband and I keep

looking at each other and wondering why it's getting > worse when we're suppose to be on the right track now.> > The past few days he's had white chunks in his stool. Loser than normal stools, very light > in color, almost like mustard with dark specs. DAN doc says yeast does NOT come out in > poop ... then what is it?> > He is on a self restricted diet due to sensory issues and just plain CARB ADDICTION.> > Oh how I wish I could make him better simply by getting him to eat healthy, nutritious > foods and NO meds. I would love to take a natural approach but don't have the knowledge > or guts to do it. Tonight at dinner I said to my husband that I am tempted to serve him > steamed fish, rice and veg every night until he eats - even if he hunger strikes for a week. > My NT daughter is such a healthy eater, asking for fish, apples,

chick peas, pears, etc. > > I know this post does not really contain any questions, just venting I guess. I can't believe > that a little boy so beautiful and perfect to me can be getting worse, slipping more and > more into the world of Autism. He did not use to be like this. He still has a spark but I am > scared that it is getting dimmer. Everyone who looks at me comments on how I look > depressed and I just shrug. This is not the life I envisioned for my children. I tried so > hard to have my kids for years and years.. I went through hell and back to get pregnant > and then to stay pregnant and I just didn't forsee any of this. > > Thanks for listening. I am just really scared I am losing my son to Autism.> > gfcfmom>

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February 2, 2008

I've heard of several other kids making great gains on liver life also. Anyone else here try it?

Re: My son is unwell and it's so hard to watch

---Oh My G-d! I just finished reading your post. It is my life.An exact carbon copy. I am in a similar position with the onlydifference that I am able to get my son to eat more foods. we started the GFCF diet in July. My husband was willing to give it 9months. We had gone to a DAN dr. and after two years my husband wasfinally on board. We have seen these glimpes of what is possible butthen have a backlash of bad days, new stimming behavior, morewithdrawn and I truly feel like my time is running out. I continue toquestion what went well on that one day and what didn't go well on theothers, Was it the specific supplements-are they working.My son too has dark circles under his eyes. I look at him and amworried and keep asking myself, what am I doing and will he ever getbetter. I don't know how much more of a restricted diet I can do for my son. I don't have any answers for you. I am still searching myself. I guess I wanted you to know that there is someone else whounfortunately has had an experience too similar to yours. Even withthe difficulty getting pregnant. I lay in bed for 6 months to have myson. He was our dream come true. Now I feel like my dream is fadingaway and I am so worried what lies ahead.I don't sleep very wellanymore and spend most of my time thinking about what I can do....I sometimes feel like I'm neglecting my younger daughter and I knowI'm neglecting my marriage and myself.Well-I just wanted to let you know that you aren't alone.JoyIn mb12 valtrex , ann andress wrote:>> Look into SCD special carbohydrate diet-- website ispecanbread.com-- my son was a carbo craver and the sugar feedsyeast--- i started with SCD and kept GF CF and it does help heal thegut better and recently started supplements slowly after being SCDdiet-- very healthy-- read about it ..yahoo group is pecanbread.comand many parents are here to support....your child will get betterwith these efforts-- 13 years ago my son did not have all thisinformation but i wish we had -- now slowly getting better --slowly...but you are doing a great job and you dont want to look backand regret you didnt try more...keep going...every little bit helps! > > Zurama wrote: Your post made me cry.That's how I felt when Mickie was that old and> saw him slip away and could't stop it.> > But your are doing all the right things early. I didn't know any of> these stuff eight years ago. Hang in there, he will start looking> better soon. It takes time, but he will improve. He is still verylittle.> > Zurama> > >> > He has been on the following since Jan 7th. He is 2.5 years old.> > > > GFCF - CF since September '07> > Diflucan> > Singulair > > Glutathione Cream daily> > B12 injections every five days, now going to every 3> > Cod Liver Oil> > Vitamin A> > MultiFlora Spectrum Probiotics> > Enzyme Complete DP-IV> > Super Nu Thera> > Vitamin C - 500 mg per day> > > > I just look at him and he seems SO MUCH worse since we started this.> I understand the > > yeast may be acting up and causing crazy behavior but he is unhappy,> unhealthy looking. > > He has dark circles under his very tired eyes. His stimming and> behaviors are just worse > > than ever. My husband and I keep looking at each other and> wondering why it's getting > > worse when we're suppose to be on the right track now.> > > > The past few days he's had white chunks in his stool. Loser than> normal stools, very light > > in color, almost like mustard with dark specs. DAN doc says yeast> does NOT come out in > > poop ... then what is it?> > > > He is on a self restricted diet due to sensory issues and just plain> CARB ADDICTION.> > > > Oh how I wish I could make him better simply by getting him to eat> healthy, nutritious > > foods and NO meds. I would love to take a natural approach but> don't have the knowledge > > or guts to do it. Tonight at dinner I said to my husband that I am> tempted to serve him > > steamed fish, rice and veg every night until he eats - even if he> hunger strikes for a week. > > My NT daughter is such a healthy eater, asking for fish, apples,> chick peas, pears, etc. > > > > I know this post does not really contain any questions, just venting> I guess. I can't believe > > that a little boy so beautiful and perfect to me can be getting> worse, slipping more and > > more into the world of Autism. He did not use to be like this. He> still has a spark but I am > > scared that it is getting dimmer. Everyone who looks at me comments> on how I look > > depressed and I just shrug. This is not the life I envisioned for> my children. I tried so > > hard to have my kids for years and years. I went through hell and> back to get pregnant > > and then to stay pregnant and I just didn't forsee any of this. > > > > Thanks for listening. I am just really scared I am losing my son to> Autism.> > > > gfcfmom> >> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.>

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February 2, 2008

Okay, I cried too. We've all so been there. Please try SCD, and don't

be afraid of the goat yogurt, my son continued his decline until we

added it in. Don't go crazy on the nuts though. You can do this. Your

doing everything right. He will get better. My son declined some on

detox, but i still think it was worth it. He is currently not

responding well to b-12, but did so well with valtrex and hbot. Keep

trying, and stay strong for your boy. something will help eventually.

-s

February 3, 2008

Don't be afraid of the goat yogurt but certainly be cautious. After a few months on SCD we tried it on both of my boys and neither could tolerate even a small amount. For a few days we went back to our casein-reaction days of being up all night and having diahrea. It's great for some and not for others.

- Dana

-----Original Message-----From: mb12 valtrex [mailto:mb12 valtrex ]On Behalf Of sarahSent: Sunday, February 03, 2008 2:31 AMTo: mb12 valtrex Subject: Re: My son is unwell and it's so hard to watch

Okay, I cried too. We've all so been there. Please try SCD, and don't be afraid of the goat yogurt, my son continued his decline until we added it in. Don't go crazy on the nuts though. You can do this. Your doing everything right. He will get better. My son declined some on detox, but i still think it was worth it. He is currently not responding well to b-12, but did so well with valtrex and hbot. Keep trying, and stay strong for your boy. something will help eventually.-s

February 3, 2008

Plesae read my post - the long one - to the newbie. Matt is saying

Daddy now and beinging imaginative play...the biggest gains have come

in the last six weeks and after a period where were sacred and Matt

looked worse than ever. Get the IGg test and make sure that you are

not setting off the immune system with an innocuous food. If it tuns

out your child can have casein...start slow,but get him on the goat

milk homemade yogurt ala SCD....HUGE healing of our kids gut with

that stuff....limit his diet, and really really think about

temporarily cutting out c carbs, starches, and grains....our kids are

not Crohns or UC...SCD is not a life sentence for them....and it

isn;t even a life sentence for some with those diseases...the poiint

of the diet is to heal the gut. Just eating foods from it that are

legal to it...not even being able to implement it " correctly " and in

stages has been transformative and cut YEARS we suspect off the

amount of time it will take Matt to reach his potential

developmentally and physically....hang in there....but get his gut on

the right path as soon as possible, based on what tests reveal about

YOUR kid. Stan's kid leaked bananas worse than milk even...you HAVE

to get rid of foods that set off the immune system to make the

biggest gains...and until that immune system is back on track, the

body will not metabolize metals properly and no other big

interventions will work adequately. Di

> > >

> > > He has been on the following since Jan 7th. He is 2.5 years old.

> > >

> > > GFCF - CF since September '07

> > > Diflucan

> > > Singulair

> > > Glutathione Cream daily

> > > B12 injections every five days, now going to every 3

> > > Cod Liver Oil

> > > Vitamin A

> > > MultiFlora Spectrum Probiotics

> > > Enzyme Complete DP-IV

> > > Super Nu Thera

> > > Vitamin C - 500 mg per day

> > >

> > > I just look at him and he seems SO MUCH worse since we started

> this.

> > I understand the

> > > yeast may be acting up and causing crazy behavior but he is

> unhappy,

> > unhealthy looking.

> > > He has dark circles under his very tired eyes. His stimming and

> > behaviors are just worse

> > > than ever. My husband and I keep looking at each other and

> > wondering why it's getting

> > > worse when we're suppose to be on the right track now.

> > >

> > > The past few days he's had white chunks in his stool. Loser than

> > normal stools, very light

> > > in color, almost like mustard with dark specs. DAN doc says

yeast

> > does NOT come out in

> > > poop ... then what is it?

> > >

> > > He is on a self restricted diet due to sensory issues and just

> plain

> > CARB ADDICTION.

> > >

> > > Oh how I wish I could make him better simply by getting him to

eat

> > healthy, nutritious

> > > foods and NO meds. I would love to take a natural approach but

> > don't have the knowledge

> > > or guts to do it. Tonight at dinner I said to my husband that I

am

> > tempted to serve him

> > > steamed fish, rice and veg every night until he eats - even if

he

> > hunger strikes for a week.

> > > My NT daughter is such a healthy eater, asking for fish, apples,

> > chick peas, pears, etc.

> > >

> > > I know this post does not really contain any questions, just

> venting

> > I guess. I can't believe

> > > that a little boy so beautiful and perfect to me can be getting

> > worse, slipping more and

> > > more into the world of Autism. He did not use to be like this.

He

> > still has a spark but I am

> > > scared that it is getting dimmer. Everyone who looks at me

> comments

> > on how I look

> > > depressed and I just shrug. This is not the life I envisioned

for

> > my children. I tried so

> > > hard to have my kids for years and years. I went through hell

and

> > back to get pregnant

> > > and then to stay pregnant and I just didn't forsee any of this.

> > >

> > > Thanks for listening. I am just really scared I am losing my

son

> to

> > Autism.

> > >

> > > gfcfmom

> > >

> >

> > " To accomplish great things, we must not only act, we

> > must dream; not only plan but also believe. "

> >

> > ---------------------------------

> > Be smarter than spam. See how smart SpamGuard is at giving junk

> email the boot with the All-new Yahoo! Mail

> >

>

February 3, 2008

singular if NOT doing the gradulars they would contain gluten

Recovering from Autism is a marathon NOT a sprint, but FULLY possible! Read more about it on my Blogs athttp://www.myspace.com/christelking

Re: My son is unwell and it's so hard to watch

Just a thought here…..is he on the Singulair for asthma or the autism?? I have had some patients do worse on the Singulair. Not what we had hoped for or expected, but unfortunately it is not for all. Can really affect moods. I would suggest stopping that for now.

Re the yeast NOT coming out in stools…I think you have been given incorrect information. How else will it come out from the bowel??? Changes in stool are a good sign that you ARE killing off yeast. Hang in there. To make it a bit easier for him you might want to try giving some charcoal. About 250 mg or maybe even less will do it. Give it a few hours after the Diflucan. And then give no other supplements for another hour or 2 after the charcoal. If there are a lot of toxins around from the dying yeast, the charcoal will help to mop them up and make him feel physically better.

Hang in there. As the others have said to you…you are starting early with him. He will get better. It’s a marathon, not a sprint. And for that reason it can be hard, but all worth it in the long run. I’m thinking positively for you!!!!

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February 3, 2008

melissa can you tell us what you have tried and what issues you have perhaps we can help some?? think of something else for you

Recovering from Autism is a marathon NOT a sprint, but FULLY possible! Read more about it on my Blogs athttp://www.myspace.com/christelking

Re: My son is unwell and it's so hard to watch

---Oh My G-d! I just finished reading your post. It is my life.An exact carbon copy. I am in a similar position with the onlydifference that I am able to get my son to eat more foods. we started the GFCF diet in July. My husband was willing to give it 9months. We had gone to a DAN dr. and after two years my husband wasfinally on board. We have seen these glimpes of what is possible butthen have a backlash of bad days, new stimming behavior, morewithdrawn and I truly feel like my time is running out. I continue toquestion what went well on that one day and what didn't go well on theothers, Was it the specific supplements-are they working.My son too has dark circles under his eyes. I look at him and amworried and keep asking myself, what am I doing and will he ever getbetter. I don't know how much more of a restricted diet I can do for my son. I don't have any answers for you. I am still searching myself. I guess I wanted you to know that there is someone else whounfortunately has had an experience too similar to yours. Even withthe difficulty getting pregnant. I lay in bed for 6 months to have myson. He was our dream come true. Now I feel like my dream is fadingaway and I am so worried what lies ahead.I don't sleep very wellanymore and spend most of my time thinking about what I can do....I sometimes feel like I'm neglecting my younger daughter and I knowI'm neglecting my marriage and myself.Well-I just wanted to let you know that you aren't alone.JoyIn mb12 valtrex , ann andress wrote:>> Look into SCD special carbohydrate diet-- website ispecanbread.com-- my son was a carbo craver and the sugar feedsyeast--- i started with SCD and kept GF CF and it does help heal thegut better and recently started supplements slowly after being SCDdiet-- very healthy-- read about it ..yahoo group is pecanbread.comand many parents are here to support....your child will get betterwith these efforts-- 13 years ago my son did not have all thisinformation but i wish we had -- now slowly getting better --slowly...but you are doing a great job and you dont want to look backand regret you didnt try more...keep going...every little bit helps! > > Zurama wrote: Your post made me cry.That's how I felt when Mickie was that old and> saw him slip away and could't stop it.> > But your are doing all the right things early. I didn't know any of> these stuff eight years ago. Hang in there, he will start looking> better soon. It takes time, but he will improve. He is still verylittle.> > Zurama> > >> > He has been on the following since Jan 7th. He is 2.5 years old.> > > > GFCF - CF since September '07> > Diflucan> > Singulair > > Glutathione Cream daily> > B12 injections every five days, now going to every 3> > Cod Liver Oil> > Vitamin A> > MultiFlora Spectrum Probiotics> > Enzyme Complete DP-IV> > Super Nu Thera> > Vitamin C - 500 mg per day> > > > I just look at him and he seems SO MUCH worse since we started this.> I understand the > > yeast may be acting up and causing crazy behavior but he is unhappy,> unhealthy looking. > > He has dark circles under his very tired eyes. His stimming and> behaviors are just worse > > than ever. My husband and I keep looking at each other and> wondering why it's getting > > worse when we're suppose to be on the right track now.> > > > The past few days he's had white chunks in his stool. Loser than> normal stools, very light > > in color, almost like mustard with dark specs. DAN doc says yeast> does NOT come out in > > poop ... then what is it?> > > > He is on a self restricted diet due to sensory issues and just plain> CARB ADDICTION.> > > > Oh how I wish I could make him better simply by getting him to eat> healthy, nutritious > > foods and NO meds. I would love to take a natural approach but> don't have the knowledge > > or guts to do it. Tonight at dinner I said to my husband that I am> tempted to serve him > > steamed fish, rice and veg every night until he eats - even if he> hunger strikes for a week. > > My NT daughter is such a healthy eater, asking for fish, apples,> chick peas, pears, etc. > > > > I know this post does not really contain any questions, just venting> I guess. I can't believe > > that a little boy so beautiful and perfect to me can be getting> worse, slipping more and > > more into the world of Autism. He did not use to be like this. He> still has a spark but I am > > scared that it is getting dimmer. Everyone who looks at me comments> on how I look > > depressed and I just shrug. This is not the life I envisioned for> my children. I tried so > > hard to have my kids for years and years. I went through hell and> back to get pregnant > > and then to stay pregnant and I just didn't forsee any of this. > > > > Thanks for listening. I am just really scared I am losing my son to> Autism.> > > > gfcfmom> >> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.>

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February 3, 2008

you aren't gfcf if doing collstrum as it will still have slight amounts of casein in it. would also look at going off the soy formula and trying something more like one with out soy as it can block nutritional absorbtion, is the highest allergen in the US and also works like a mock estrogen. nutramagen and neocate are gfcfsf, nordic natruals still contains soy as well

Recovering from Autism is a marathon NOT a sprint, but FULLY possible! Read more about it on my Blogs athttp://www.myspace.com/christelking

Re: My son is unwell and it's so hard to watch

I´m not MD nor any kind of practitioner, just a father of a 4 yo with ASD who is doing wonderfully now, but was like you child not long ago when his DAN prescribed almost the same stuff.IT WAS CRAZY!!!! I regret so much we did that!!!Probably many DAN´s rx the same as starting point and many children do great with such list of sups and meds at once but I doubt it.I´ve also seen my child getting worse for some weeks and then I decided to stop.How can they or you know what is doing what to your child?My child reacted adversely to CLO, Vit A, SNT, MeB12 and other probiotics not in your list. Nothing is granted to be good nor at least inocuos to our children.What I did then was:Keep diet, antifungal, milk thistle (not in your list) for long enough until we made sure he was startinng to feel better.Then I did comprehensive stool test including A toxine of Clostidium difficile, and treated it for 6 weeks with flagyl. My son kept getting better.Also viral and aso test, that lead us to antiviral and abx, both on long term basis.Only after that I started to add sups, starting with antioxidant and detox ones, including Vit C, CoQ10, Glutation, and carnosine. Also Pro-Bio Gold, my son did badly with culturelle, three lac and other one I don´t remember.One at a time every 5 days.At last I´ve added Vit B complex, regular dose, not mega dose, MeB12 oral, multi minerals, taurine, lithium, glutamine, etc.Now I know I won´t go back to Vit A, mega dose of MeB12, enzime DPP-IV, CLO, SNT.My son never been better and keeps improving, I think the clue for him was to detect and treat all the bugs. Later he could tolerate better the rest and also not need that many.Yes, we have another MD, of course...Follow your gut!!!>> He has been on the following since Jan 7th. He is 2.5 years old.> > GFCF - CF since September '07> Diflucan> Singulair > Glutathione Cream daily> B12 injections every five days, now going to every 3> Cod Liver Oil> Vitamin A> MultiFlora Spectrum Probiotics> Enzyme Complete DP-IV> Super Nu Thera> Vitamin C - 500 mg per day> > I just look at him and he seems SO MUCH worse since we started this. I understand the > yeast may be acting up and causing crazy behavior but he is unhappy, unhealthy looking. > He has dark circles under his very tired eyes. His stimming and behaviors are just worse > than ever. My husband and I keep looking at each other and wondering why it's getting > worse when we're suppose to be on the right track now.> > The past few days he's had white chunks in his stool. Loser than normal stools, very light > in color, almost like mustard with dark specs. DAN doc says yeast does NOT come out in > poop ... then what is it?> > He is on a self restricted diet due to sensory issues and just plain CARB ADDICTION.> > Oh how I wish I could make him better simply by getting him to eat healthy, nutritious > foods and NO meds. I would love to take a natural approach but don't have the knowledge > or guts to do it. Tonight at dinner I said to my husband that I am tempted to serve him > steamed fish, rice and veg every night until he eats - even if he hunger strikes for a week. > My NT daughter is such a healthy eater, asking for fish, apples, chick peas, pears, etc. > > I know this post does not really contain any questions, just venting I guess. I can't believe > that a little boy so beautiful and perfect to me can be getting worse, slipping more and > more into the world of Autism. He did not use to be like this. He still has a spark but I am > scared that it is getting dimmer. Everyone who looks at me comments on how I look > depressed and I just shrug. This is not the life I envisioned for my children. I tried so > hard to have my kids for years and years.. I went through hell and back to get pregnant > and then to stay pregnant and I just didn't forsee any of this. > > Thanks for listening. I am just really scared I am losing my son to Autism.> > gfcfmom>

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.19/1256 - Release Date: 2/2/2008 1:50 PM

February 3, 2008

Hi:

If you have another doctor, you might get another opinion. A GP, Ped or

Family Doc, not affiliated with the big autism treatment protocols. If

your son is really unwell and so much worse, it would be helpful to have

him seen by another medical professional. You already have the reason

for the appt. due to his current gastric problems. I wish you and your

son very good luck and ask that you remember that the answers you get on

this list are not from medical professionals.

>

> He has been on the following since Jan 7th. He is 2.5 years old.

>

> GFCF - CF since September '07

> Diflucan

> Singulair

> Glutathione Cream daily

> B12 injections every five days, now going to every 3

> Cod Liver Oil

> Vitamin A

> MultiFlora Spectrum Probiotics

> Enzyme Complete DP-IV

> Super Nu Thera

> Vitamin C - 500 mg per day

>

> I just look at him and he seems SO MUCH worse since we started this.

I understand the

> yeast may be acting up and causing crazy behavior but he is unhappy,

unhealthy looking.

> He has dark circles under his very tired eyes. His stimming and

behaviors are just worse

> than ever. My husband and I keep looking at each other and wondering

why it's getting

> worse when we're suppose to be on the right track now.

>

> The past few days he's had white chunks in his stool. Loser than

normal stools, very light

> in color, almost like mustard with dark specs. DAN doc says yeast

does NOT come out in

> poop ... then what is it?

>

> He is on a self restricted diet due to sensory issues and just plain

CARB ADDICTION.

>

> Oh how I wish I could make him better simply by getting him to eat

healthy, nutritious

> foods and NO meds. I would love to take a natural approach but don't

have the knowledge

> or guts to do it. Tonight at dinner I said to my husband that I am

tempted to serve him

> steamed fish, rice and veg every night until he eats - even if he

hunger strikes for a week.

> My NT daughter is such a healthy eater, asking for fish, apples, chick

peas, pears, etc.

>

> I know this post does not really contain any questions, just venting I

guess. I can't believe

> that a little boy so beautiful and perfect to me can be getting worse,

slipping more and

> more into the world of Autism. He did not use to be like this. He

still has a spark but I am

> scared that it is getting dimmer. Everyone who looks at me comments

on how I look

> depressed and I just shrug. This is not the life I envisioned for my

children. I tried so

> hard to have my kids for years and years. I went through hell and

back to get pregnant

> and then to stay pregnant and I just didn't forsee any of this.

>

> Thanks for listening. I am just really scared I am losing my son to

Autism.

>

> gfcfmom

>

February 3, 2008

Dear gfcfmom,

My son is alomost 5. He is on his DAN protocol 8 monthes now. My DAN doctor said to me that I will start seeing good improvements within 6 monthes. The first improvements i noticed where in the first week of his GFCG diet, but the doctor was right. More improvements came later on.

In my opinion, some of your son's supplements are not right for him. you can know which one only by trail an error!!

For example, several monthes ago my son started those crazy laughs, he never had them before the treatment!!!. I was realy missreble because of that. After many trails (according to doctor advice) i knew that super NU thera (liquid form) was doing that, because itcontains oxilate. I changed it to super NU thera capsules. With in one month the crazy laughs disapeared.

I think it is much much better to introduce one supplement at atime to know its effect on each individual. Of course that will take more time, but its better than going back and forth.

I know how bad to see your son not improving the way you expected. But the problem is that you need to be paitient with this kind of treatment. It is the only available treatment for autism which safe. Take my advice and dont expect fast results.

You are lucky cause you started the treatment for your son in this early age. My son was not diagnosed untill he was 4!!!!!!!!!!!!!!!!

Whish you and your son all the best.

Reem

He has been on the following since Jan 7th. He is 2.5 years old.GFCF - CF since September '07DiflucanSingulair Glutathione Cream dailyB12 injections every five days, now going to every 3

Cod Liver OilVitamin AMultiFlora Spectrum ProbioticsEnzyme Complete DP-IVSuper Nu TheraVitamin C - 500 mg per dayI just look at him and he seems SO MUCH worse since we started this. I understand the

yeast may be acting up and causing crazy behavior but he is unhappy, unhealthy looking. He has dark circles under his very tired eyes. His stimming and behaviors are just worse than ever. My husband and I keep looking at each other and wondering why it's getting

worse when we're suppose to be on the right track now.The past few days he's had white chunks in his stool. Loser than normal stools, very light in color, almost like mustard with dark specs. DAN doc says yeast does NOT come out in

poop ... then what is it?He is on a self restricted diet due to sensory issues and just plain CARB ADDICTION.Oh how I wish I could make him better simply by getting him to eat healthy, nutritious foods and NO meds. I would love to take a natural approach but don't have the knowledge

or guts to do it. Tonight at dinner I said to my husband that I am tempted to serve him steamed fish, rice and veg every night until he eats - even if he hunger strikes for a week. My NT daughter is such a healthy eater, asking for fish, apples, chick peas, pears, etc.

I know this post does not really contain any questions, just venting I guess. I can't believe that a little boy so beautiful and perfect to me can be getting worse, slipping more and more into the world of Autism. He did not use to be like this. He still has a spark but I am

scared that it is getting dimmer. Everyone who looks at me comments on how I look depressed and I just shrug. This is not the life I envisioned for my children. I tried so hard to have my kids for years and years. I went through hell and back to get pregnant

and then to stay pregnant and I just didn't forsee any of this. Thanks for listening. I am just really scared I am losing my son to Autism.gfcfmom

February 3, 2008

Hard to remember everything we've tried over 3 1/2 years. Have tried gfcfsf, mb12 shots, owned our own hbot chamber, many various supplements, mb12 nasal spray, Krigsman scope, diflucan, nystatin, vancyomycin, gluatathione, probiotics, on and on and on. Only thing I have not done is SCD. My son gags on lots of whole foods and hates texture of most meats so this would be impossible. Zeolite/NCD, Liver Lfe, NDF Plus, Chelate Pro....We are currently doing antivirals and seeing some improvements.

Re: My son is unwell and it's so hard to watch

---Oh My G-d! I just finished reading your post. It is my life.An exact carbon copy. I am in a similar position with the onlydifference that I am able to get my son to eat more foods. we started the GFCF diet in July. My husband was willing to give it 9months. We had gone to a DAN dr. and after two years my husband wasfinally on board. We have seen these glimpes of what is possible butthen have a backlash of bad days, new stimming behavior, morewithdrawn and I truly feel like my time is running out. I continue toquestion what went well on that one day and what didn't go well on theothers, Was it the specific supplements-are they working.My son too has dark circles under his eyes. I look at him and amworried and keep asking myself, what am I doing and will he ever getbetter. I don't know how much more of a restricted diet I can do for my son. I don't have any answers for you. I am still searching myself. I guess I wanted you to know that there is someone else whounfortunately has had an experience too similar to yours. Even withthe difficulty getting pregnant. I lay in bed for 6 months to have myson. He was our dream come true. Now I feel like my dream is fadingaway and I am so worried what lies ahead.I don't sleep very wellanymore and spend most of my time thinking about what I can do....I sometimes feel like I'm neglecting my younger daughter and I knowI'm neglecting my marriage and myself.Well-I just wanted to let you know that you aren't alone.JoyIn mb12 valtrex , ann andress wrote:>> Look into SCD special carbohydrate diet-- website ispecanbread.com-- my son was a carbo craver and the sugar feedsyeast--- i started with SCD and kept GF CF and it does help heal thegut better and recently started supplements slowly after being SCDdiet-- very healthy-- read about it ..yahoo group is pecanbread.comand many parents are here to support....your child will get betterwith these efforts-- 13 years ago my son did not have all thisinformation but i wish we had -- now slowly getting better --slowly...but you are doing a great job and you dont want to look backand regret you didnt try more...keep going...every little bit helps! > > Zurama wrote: Your post made me cry.That's how I felt when Mickie was that old and> saw him slip away and could't stop it.> > But your are doing all the right things early. I didn't know any of> these stuff eight years ago. Hang in there, he will start looking> better soon. It takes time, but he will improve. He is still verylittle.> > Zurama> > >> > He has been on the following since Jan 7th. He is 2.5 years old.> > > > GFCF - CF since September '07> > Diflucan> > Singulair > > Glutathione Cream daily> > B12 injections every five days, now going to every 3> > Cod Liver Oil> > Vitamin A> > MultiFlora Spectrum Probiotics> > Enzyme Complete DP-IV> > Super Nu Thera> > Vitamin C - 500 mg per day> > > > I just look at him and he seems SO MUCH worse since we started this.> I understand the > > yeast may be acting up and causing crazy behavior but he is unhappy,> unhealthy looking. > > He has dark circles under his very tired eyes. His stimming and> behaviors are just worse > > than ever. My husband and I keep looking at each other and> wondering why it's getting > > worse when we're suppose to be on the right track now.> > > > The past few days he's had white chunks in his stool. Loser than> normal stools, very light > > in color, almost like mustard with dark specs. DAN doc says yeast> does NOT come out in > > poop ... then what is it?> > > > He is on a self restricted diet due to sensory issues and just plain> CARB ADDICTION.> > > > Oh how I wish I could make him better simply by getting him to eat> healthy, nutritious > > foods and NO meds. I would love to take a natural approach but> don't have the knowledge > > or guts to do it. Tonight at dinner I said to my husband that I am> tempted to serve him > > steamed fish, rice and veg every night until he eats - even if he> hunger strikes for a week. > > My NT daughter is such a healthy eater, asking for fish, apples,> chick peas, pears, etc. > > > > I know this post does not really contain any questions, just venting> I guess. I can't believe > > that a little boy so beautiful and perfect to me can be getting> worse, slipping more and > > more into the world of Autism. He did not use to be like this. He> still has a spark but I am > > scared that it is getting dimmer. Everyone who looks at me comments> on how I look > > depressed and I just shrug. This is not the life I envisioned for> my children. I tried so > > hard to have my kids for years and years. I went through hell and> back to get pregnant > > and then to stay pregnant and I just didn't forsee any of this. > > > > Thanks for listening. I am just really scared I am losing my son to> Autism.> > > > gfcfmom> >> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.>

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February 3, 2008

did you try LDN and pancreatic enzymes? perscription strength? DMG, folapro?

Recovering from Autism is a marathon NOT a sprint, but FULLY possible! Read more about it on my Blogs athttp://www.myspace.com/christelking

Re: My son is unwell and it's so hard to watch

---Oh My G-d! I just finished reading your post. It is my life.An exact carbon copy. I am in a similar position with the onlydifference that I am able to get my son to eat more foods. we started the GFCF diet in July. My husband was willing to give it 9months. We had gone to a DAN dr. and after two years my husband wasfinally on board. We have seen these glimpes of what is possible butthen have a backlash of bad days, new stimming behavior, morewithdrawn and I truly feel like my time is running out. I continue toquestion what went well on that one day and what didn't go well on theothers, Was it the specific supplements-are they working.My son too has dark circles under his eyes. I look at him and amworried and keep asking myself, what am I doing and will he ever getbetter. I don't know how much more of a restricted diet I can do for my son. I don't have any answers for you. I am still searching myself. I guess I wanted you to know that there is someone else whounfortunately has had an experience too similar to yours. Even withthe difficulty getting pregnant. I lay in bed for 6 months to have myson. He was our dream come true. Now I feel like my dream is fadingaway and I am so worried what lies ahead.I don't sleep very wellanymore and spend most of my time thinking about what I can do....I sometimes feel like I'm neglecting my younger daughter and I knowI'm neglecting my marriage and myself.Well-I just wanted to let you know that you aren't alone.JoyIn mb12 valtrex , ann andress wrote:>> Look into SCD special carbohydrate diet-- website ispecanbread.com-- my son was a carbo craver and the sugar feedsyeast--- i started with SCD and kept GF CF and it does help heal thegut better and recently started supplements slowly after being SCDdiet-- very healthy-- read about it ..yahoo group is pecanbread.comand many parents are here to support....your child will get betterwith these efforts-- 13 years ago my son did not have all thisinformation but i wish we had -- now slowly getting better --slowly...but you are doing a great job and you dont want to look backand regret you didnt try more...keep going...every little bit helps! > > Zurama wrote: Your post made me cry.That's how I felt when Mickie was that old and> saw him slip away and could't stop it.> > But your are doing all the right things early. I didn't know any of> these stuff eight years ago. Hang in there, he will start looking> better soon. It takes time, but he will improve. He is still verylittle.> > Zurama> > >> > He has been on the following since Jan 7th. He is 2.5 years old.> > > > GFCF - CF since September '07> > Diflucan> > Singulair > > Glutathione Cream daily> > B12 injections every five days, now going to every 3> > Cod Liver Oil> > Vitamin A> > MultiFlora Spectrum Probiotics> > Enzyme Complete DP-IV> > Super Nu Thera> > Vitamin C - 500 mg per day> > > > I just look at him and he seems SO MUCH worse since we started this.> I understand the > > yeast may be acting up and causing crazy behavior but he is unhappy,> unhealthy looking. > > He has dark circles under his very tired eyes. His stimming and> behaviors are just worse > > than ever. My husband and I keep looking at each other and> wondering why it's getting > > worse when we're suppose to be on the right track now.> > > > The past few days he's had white chunks in his stool. Loser than> normal stools, very light > > in color, almost like mustard with dark specs. DAN doc says yeast> does NOT come out in > > poop ... then what is it?> > > > He is on a self restricted diet due to sensory issues and just plain> CARB ADDICTION.> > > > Oh how I wish I could make him better simply by getting him to eat> healthy, nutritious > > foods and NO meds. I would love to take a natural approach but> don't have the knowledge > > or guts to do it. Tonight at dinner I said to my husband that I am> tempted to serve him > > steamed fish, rice and veg every night until he eats - even if he> hunger strikes for a week. > > My NT daughter is such a healthy eater, asking for fish, apples,> chick peas, pears, etc. > > > > I know this post does not really contain any questions, just venting> I guess. I can't believe > > that a little boy so beautiful and perfect to me can be getting> worse, slipping more and > > more into the world of Autism. He did not use to be like this. He> still has a spark but I am > > scared that it is getting dimmer. Everyone who looks at me comments> on how I look > > depressed and I just shrug. This is not the life I envisioned for> my children. I tried so > > hard to have my kids for years and years. I went through hell and> back to get pregnant > > and then to stay pregnant and I just didn't forsee any of this. > > > > Thanks for listening. I am just really scared I am losing my son to> Autism.> > > > gfcfmom> >> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.>

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February 4, 2008

Yes to LDN. No response. Yes to DMG. No response and TMG too. No pancreatic enzymes and I don't know what folapro is but have tried both folic and folinic acid.

This may sound odd, but he has never been able to "blow". Can't blow thru a straw, can't blow to whistle, play an instrument, etc. No outward wind making at all (at least not from his mouth.) Anyone have a clue what his is all about?

He is getting really good at imitation. Will actually even wave hi and bye to us in imitation now or if we ask him to, BUT when we ask him to make a sound he shakes his head NO. He believes he can't imitate sound or does not want to. I just don't understand it. (He is perfectly capable of making sound, is very noisy with vocal stims, has made words or close proximities in the past but loses all of them. Lately, not even proximities. Just no words at all.) He does pull his breath in ALL THE TIME. Sounds like a squeaky gate or like the sound you make when you gasp exaggeratedly at someone. Over and over he makes this sound. Ugh.

Re: My son is unwell and it's so hard to watch

---Oh My G-d! I just finished reading your post. It is my life.An exact carbon copy. I am in a similar position with the onlydifference that I am able to get my son to eat more foods. we started the GFCF diet in July. My husband was willing to give it 9months. We had gone to a DAN dr. and after two years my husband wasfinally on board. We have seen these glimpes of what is possible butthen have a backlash of bad days, new stimming behavior, morewithdrawn and I truly feel like my time is running out. I continue toquestion what went well on that one day and what didn't go well on theothers, Was it the specific supplements-are they working.My son too has dark circles under his eyes. I look at him and amworried and keep asking myself, what am I doing and will he ever getbetter. I don't know how much more of a restricted diet I can do for my son. I don't have any answers for you. I am still searching myself. I guess I wanted you to know that there is someone else whounfortunately has had an experience too similar to yours. Even withthe difficulty getting pregnant. I lay in bed for 6 months to have myson. He was our dream come true. Now I feel like my dream is fadingaway and I am so worried what lies ahead.I don't sleep very wellanymore and spend most of my time thinking about what I can do....I sometimes feel like I'm neglecting my younger daughter and I knowI'm neglecting my marriage and myself.Well-I just wanted to let you know that you aren't alone.JoyIn mb12 valtrex , ann andress wrote:>> Look into SCD special carbohydrate diet-- website ispecanbread.com-- my son was a carbo craver and the sugar feedsyeast--- i started with SCD and kept GF CF and it does help heal thegut better and recently started supplements slowly after being SCDdiet-- very healthy-- read about it ..yahoo group is pecanbread.comand many parents are here to support....your child will get betterwith these efforts-- 13 years ago my son did not have all thisinformation but i wish we had -- now slowly getting better --slowly...but you are doing a great job and you dont want to look backand regret you didnt try more...keep going...every little bit helps! > > Zurama wrote: Your post made me cry.That's how I felt when Mickie was that old and> saw him slip away and could't stop it.> > But your are doing all the right things early. I didn't know any of> these stuff eight years ago. Hang in there, he will start looking> better soon. It takes time, but he will improve. He is still verylittle.> > Zurama> > >> > He has been on the following since Jan 7th. He is 2.5 years old.> > > > GFCF - CF since September '07> > Diflucan> > Singulair > > Glutathione Cream daily> > B12 injections every five days, now going to every 3> > Cod Liver Oil> > Vitamin A> > MultiFlora Spectrum Probiotics> > Enzyme Complete DP-IV> > Super Nu Thera> > Vitamin C - 500 mg per day> > > > I just look at him and he seems SO MUCH worse since we started this.> I understand the > > yeast may be acting up and causing crazy behavior but he is unhappy,> unhealthy looking. > > He has dark circles under his very tired eyes. His stimming and> behaviors are just worse > > than ever. My husband and I keep looking at each other and> wondering why it's getting > > worse when we're suppose to be on the right track now.> > > > The past few days he's had white chunks in his stool. Loser than> normal stools, very light > > in color, almost like mustard with dark specs. DAN doc says yeast> does NOT come out in > > poop ... then what is it?> > > > He is on a self restricted diet due to sensory issues and just plain> CARB ADDICTION.> > > > Oh how I wish I could make him better simply by getting him to eat> healthy, nutritious > > foods and NO meds. I would love to take a natural approach but> don't have the knowledge > > or guts to do it. Tonight at dinner I said to my husband that I am> tempted to serve him > > steamed fish, rice and veg every night until he eats - even if he> hunger strikes for a week. > > My NT daughter is such a healthy eater, asking for fish, apples,> chick peas, pears, etc. > > > > I know this post does not really contain any questions, just venting> I guess. I can't believe > > that a little boy so beautiful and perfect to me can be getting> worse, slipping more and > > more into the world of Autism. He did not use to be like this. He> still has a spark but I am > > scared that it is getting dimmer. Everyone who looks at me comments> on how I look > > depressed and I just shrug. This is not the life I envisioned for> my children. I tried so > > hard to have my kids for years and years. I went through hell and> back to get pregnant > > and then to stay pregnant and I just didn't forsee any of this. > > > > Thanks for listening. I am just really scared I am losing my son to> Autism.> > > > gfcfmom> >> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.>

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.19/1256 - Release Date: 2/2/2008 1:50 PM

February 4, 2008

Hi ,

My son is almost the same age as yours, and I know how you feel about waiting for him to be verbal. sometimes that can be frustrating.. I'm working hard on this too as I have time line until june, if he cant make it to be progress in his verbal he has to drop out of school :-(

Anyway, we tried maybe almost the same thing as you do, he didnt response to DMG, didnt try on LDN yet as I didnt have doctor so I prefer to use all natural things first. But overall, we make quite good progress with him as I just started biomedic last january 2007, and he has move from no verbal at all to echolalia, only now desperately getting him over this.

He has make great improvement after AIT therapy, you might want to check on this, as my son has terrible hearing on language frequency, and with him on day 7 on AIT, he suddenly say "book" while pointing out at the book.

Before that AIT, we only make supplementation (we are on brainchild detox program), GFCF, no 100% SF, speech therapy and sensory integration, and after 2 months, he started to blow the whistle!! This is the first sign that he is ready to get to verbal (from wht I know), that he can blow the instrument or whistle. I still remember back at tht time, when he started that noisy things, we were so happy and didnt bother at all with all those messy notes that come out of it. Its important in my opinion that we also do behaviour, speech, sensory therapy all together, with jason we did 4 hours speech, 5 hours sensory, painting, music, horse riding, 3 hours occupational and 6 hours educational with floortime, per WEEK.

The speech therapy that we are doing is using some kind of tools (ark) that stimulate and massage the facial area and mouth area, I think this is also important. If your kid is not ready in the verbal bcos the muscle is not strong enough, this could the the problem too. You also might want to check on PROMPT method for speech apraxia, if you are in US, you are lucky as they have the therapy there, as we dont have it here. The also pointing at the muscle pressure on certain area, I'm not really good at explaining it, as I read it last year as options, but since they didnt have it here, no use of learning abt it. They have website for sure.

One more thing, I also has lots of verbal stimming after acetyl-l-carnitine, and I am currectly trying on bacopa for boosting the verbal. You might want to check on this, will surely post it if i have improvement with bacopa.

He also responded very well with OLE and antifungal, so this also could be an option.

Overally, I was discussing with my husband few nites ago, that is making improvement in other sector, but not Verbal, its frustrating... he has better eye contact, respond when we call him (not with verbal of course), no major tantrum, no emotional outburst, look where we look or point (which he never did before), understand instruction, very good in immitation, can play hide and seek!! or even catch, like to cuddle, we all have so much improvement in those, but just not overcome the verbal yet! We also realize that we have not yet drilled him on communication skill, so we will try on ABA next month.

Hang in there...

Cheers,

Yuliana (mom of , soon to be 5 years)

Re: My son is unwell and it's so hard to watch

---Oh My G-d! I just finished reading your post. It is my life.An exact carbon copy. I am in a similar position with the onlydifference that I am able to get my son to eat more foods. we started the GFCF diet in July. My husband was willing to give it 9months. We had gone to a DAN dr. and after two years my husband wasfinally on board. We have seen these glimpes of what is possible butthen have a backlash of bad days, new stimming behavior, morewithdrawn and I truly feel like my time is running out. I continue toquestion what went well on that one day and what didn't go well on theothers, Was it the specific supplements-are they working.My son too has dark circles under his eyes. I look at him and amworried and keep asking myself, what am I doing and will he ever getbetter. I don't know how much more of a restricted diet I can do for my son. I don't have any answers for you. I am still searching myself. I guess I wanted you to know that there is someone else whounfortunately has had an experience too similar to yours. Even withthe difficulty getting pregnant. I lay in bed for 6 months to have myson. He was our dream come true. Now I feel like my dream is fadingaway and I am so worried what lies ahead.I don't sleep very wellanymore and spend most of my time thinking about what I can do....I sometimes feel like I'm neglecting my younger daughter and I knowI'm neglecting my marriage and myself.Well-I just wanted to let you know that you aren't alone.JoyIn mb12 valtrex , ann andress wrote:>> Look into SCD special carbohydrate diet-- website ispecanbread.com-- my son was a carbo craver and the sugar feedsyeast--- i started with SCD and kept GF CF and it does help heal thegut better and recently started supplements slowly after being SCDdiet-- very healthy-- read about it ..yahoo group is pecanbread.comand many parents are here to support....your child will get betterwith these efforts-- 13 years ago my son did not have all thisinformation but i wish we had -- now slowly getting better --slowly...but you are doing a great job and you dont want to look backand regret you didnt try more...keep going...every little bit helps! > > Zurama wrote: Your post made me cry.That's how I felt when Mickie was that old and> saw him slip away and could't stop it.> > But your are doing all the right things early. I didn't know any of> these stuff eight years ago. Hang in there, he will start looking> better soon. It takes time, but he will improve. He is still verylittle.> > Zurama> > >> > He has been on the following since Jan 7th. He is 2.5 years old.> > > > GFCF - CF since September '07> > Diflucan> > Singulair > > Glutathione Cream daily> > B12 injections every five days, now going to every 3> > Cod Liver Oil> > Vitamin A> > MultiFlora Spectrum Probiotics> > Enzyme Complete DP-IV> > Super Nu Thera> > Vitamin C - 500 mg per day> > > > I just look at him and he seems SO MUCH worse since we started this.> I understand the > > yeast may be acting up and causing crazy behavior but he is unhappy,> unhealthy looking. > > He has dark circles under his very tired eyes. His stimming and> behaviors are just worse > > than ever. My husband and I keep looking at each other and> wondering why it's getting > > worse when we're suppose to be on the right track now.> > > > The past few days he's had white chunks in his stool. Loser than> normal stools, very light > > in color, almost like mustard with dark specs. DAN doc says yeast> does NOT come out in > > poop ... then what is it?> > > > He is on a self restricted diet due to sensory issues and just plain> CARB ADDICTION.> > > > Oh how I wish I could make him better simply by getting him to eat> healthy, nutritious > > foods and NO meds. I would love to take a natural approach but> don't have the knowledge > > or guts to do it. Tonight at dinner I said to my husband that I am> tempted to serve him > > steamed fish, rice and veg every night until he eats - even if he> hunger strikes for a week. > > My NT daughter is such a healthy eater, asking for fish, apples,> chick peas, pears, etc. > > > > I know this post does not really contain any questions, just venting> I guess. I can't believe > > that a little boy so beautiful and perfect to me can be getting> worse, slipping more and > > more into the world of Autism. He did not use to be like this. He> still has a spark but I am > > scared that it is getting dimmer. Everyone who looks at me comments> on how I look > > depressed and I just shrug. This is not the life I envisioned for> my children. I tried so > > hard to have my kids for years and years. I went through hell and> back to get pregnant > > and then to stay pregnant and I just didn't forsee any of this. > > > > Thanks for listening. I am just really scared I am losing my son to> Autism.> > > > gfcfmom> >> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.>

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.19/1256 - Release Date: 2/2/2008 1:50 PM

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