need support! frustrated with kids...

February 21, 2012

Hi Friends,I am feeling so frustrated. I feel very down today about our diet (GFCF, expensive and kids are very hit or miss about what they will eat) and of course supplements. Here is the thing... I recently started my boys (8 and 5) on high dose niacin (no flush inositol), 1 gr, TID plus b6 (100 mg p5p) and zinc since they both have pyroluria. I am starting to see big improvements, especially in my 5 yo. BUT, I am having such a hard time getting them to take the meds. I am very aware that coercion and force are not options, and not just bc they are not long-term solutions.

I made these charts with their favorite characters on them and they get a check mark for each med taken (three times per day). When the charts are filled in, they will get something special: a trip to Great Wolf Lodge. Also, I have given them lego sets, and other toys. The thing is... this method is too expensive, and I feel it is spiraling way out of control. e.g., if my husband knew about all the lego and so, he would be angry with me. But, I don't know what else to do! I feel their lives are at stake!

I am honest with them, to a degree about my frustration, but this issue is too big and difficult for a child! I just want to crawl under a rock...Also, we homeschool, which I am grateful for, but being with them all the time is hard. (I also have a 2 yo daughter). Their social and emotional needs are so, so draining.

My mother has been so generous, and she helps me pay for groceries and supplements. Without her, I would be lost...I feel like groceries are such a huge expense. Of course, we don't eat out, but we spend nearly 2K per month on groceries/vitamins. What about you? Am I spending too much? Are there ways to make it less? Is there are way to make medicine time easier?

HELP!Jean

February 21, 2012

Hi Jean,

Being a homeschool mom, I feel your frustration of the constant demands and the financial strains of a single income. We have to make our budget really stretch. We could never afford $500 a week for supplements and groceries. You should go over to TACAnow.org and check them out. They have really great links about doing gfcf on a budget and affordable meal plans and recipes. Do you go to farmer's market? This can save you a small fortune in fresh produce plus you'll be helping our local farmers. We shop by what's on sale. I will often buy the grass fed meats for the boys and buy the crap for me and my husband. I know we should focus on the whole family but we do what we have to do to get by. You could try doing meatless meals a couple times a week. Clip coupons. Try not to buy things on a whim.

As far as supplements, most people tend to gravitate towards the companies that market directly to our kids. Shop around. There are plenty of companies out there with comparative products (sometimes even better!) with better prices. Just because a pcompany markets products for kids on the spectrum, doesnt make it the best choice or guarantee the purest formulas or best quality. This takes time and research, but it's well worth it. You can always ask here - there are so many of us that its very likely someone has tried a product you might be interested in (or have some knowledge of the company.) I buy many of my supplements from Swansons. I also use Amazon to price compare and love love love being able to read the reviews from people who have tried the product. That, alone, has helped me spend my money much more wisely.

I'm not above bribery...I use it, myself. But I keep it under control. Maybe once your kids are at a point where they are taking supplements with relative ease, you could hand out weekly stickers instead of daily. Make the prizes smaller or find fun, free things to do with them. A little imagination can go a long way. As they get older, they will have a better understanding of being proactive in their own health and well being. But we are not helping ourselves or our kids when we let our finances spin out of control. There is no easier, faster way to add tension to our households and our children are very sensitive and reactice to our own stress.

There's a few things out there I would love to try for my kids that I simply can not afford. I don't dwell on it - I simply move forward and do the best I can with what I CAN afford. I'm picky about how I spend my money because I have to be. I wont just throw it to the first person who says they can help my kid. I research research research and ask alot of people alot of questions. I rely heavily on a company's transparency and reputation, and the experiences of other people.

We all have days when we want to crawl under a rock. God knows I've had my share. It's a long road, but that's why we're here. You are not in this alone. Sometimes I find it hard to strike a balance and more often than not, my son's diagnosis consumes my days and runs our household. Sometimes we have to remember to have fun and just enjoy the beautiful people God has put it in our lives. Hang in there. Better days are ahead.

-Tammy

Sent from my Kindle Fire

Sent: Tue Feb 21 10:56:40 EST 2012

To: mb12valtrex

Subject: need support! frustrated with kids...

Hi Friends,I am feeling so frustrated. I feel very down today about our diet (GFCF, expensive and kids are very hit or miss about what they will eat) and of course supplements. Here is the thing... I recently started my boys (8 and 5) on high dose niacin (no flush inositol), 1 gr, TID plus b6 (100 mg p5p) and zinc since they both have pyroluria. I am starting to see big improvements, especially in my 5 yo. BUT, I am having such a hard time getting them to take the meds. I am very aware that coercion and force are not options, and not just bc they are not long-term solutions.

I made these charts with their favorite characters on them and they get a check mark for each med taken (three times per day). When the charts are filled in, they will get something special: a trip to Great Wolf Lodge. Also, I have given them lego sets, and other toys. The thing is... this method is too expensive, and I feel it is spiraling way out of control. e.g., if my husband knew about all the lego and so, he would be angry with me. But, I don't know what else to do! I feel their lives are at stake!

I am honest with them, to a degree about my frustration, but this issue is too big and difficult for a child! I just want to crawl under a rock...Also, we homeschool, which I am grateful for, but being with them all the time is hard. (I also have a 2 yo daughter). Their social and emotional needs are so, so draining.

My mother has been so generous, and she helps me pay for groceries and supplements. Without her, I would be lost...I feel like groceries are such a huge expense. Of course, we don't eat out, but we spend nearly 2K per month on groceries/vitamins. What about you? Am I spending too much? Are there ways to make it less? Is there are way to make medicine time easier?

HELP!Jean

February 21, 2012

Jean,

All the gfcf substitutes are expensive and can be contaminated in our

experience. After a short trial of milk and bread substitutes, we gave up on

those. It's been 10y+ now and no big deal. Water for meals or use of juicer

contents watered down some. 'Frog drinks' for the things that are green and

healthy may appeal to the boys. If it is palatable to me, it passes here. Juicer

also makes good 'popsicles' - molds at target - and you can dream up any name

for the different colors that your boys' like-cartoon, space, planet etc. You

can use the residue from juicer as 'flour' too, lessening the requirement for

the $gfcf flours. A blender works ok too just has more residue in the drink. You

can cook things like squash, carrots, cauliflower, broccoli etc to the mash

stage and put it in smoothies, soups, gravies, popsicles etc. As we were

beginning, it meant a bit of compromise using sweeteners or the sweeter fruits.

Coconut is fine here so I use if in recipes for 'milk', smoothies custards etc.

Hazel nut flour makes a good coating for fish, liver etc. Find a few good

recipes and stick to them. Fresh and organic is what I strive for, lots of bone

broth to cook things like quinoa, rice, as base for soup, in smoothies. Bob's

Red Mill is pricey but I still use the pancake mix 1/2 and 1/2 w other flours to

extend it and use it for many things besides 'pancakes' and put nutritious suff

in as they are mixed. We use Source Naturals zinc lozenges - yes, it has some

nasties but it is like a candy bit and never a 'no' for it.

http://www.nutritiongeeks.com/ is what I use. Country Life also has a palatible

one

http://www.vitacost.com/productResults.aspx?previousText=source+natural+zinc & ss=\

1 & x=19 & y=18 & ntk=products & Ntt=country%20life%20zinc Both are on sale periodically

which is when I get them if I can. Inositol as

http://purebulk.com/inositol-hexanicotinate comes in a powder - easy to hide in

tacos, soup, pizza refrieds - whatever you can think of. Pure bulk sends their

stuff in aluminum containers which???? P5P is nasty out of the capsule so don't

have a recommendation for that-a friend open capsules and puts that in foods

also. http://www.nutritiongeeks.com/ has water oz products that truly taste like

water for most of them[which makes me suspicious but a friend says the zinc does

wonders]. I order the 4x strength when I get Zn, Mg. Vitacost, Swanson,

Nutrition Geeks have free shpg many times over a certain amt and you can find

coupons on line.

http://www.beyondacenturyonline.com/retailer/store_templates/shell_id_1.asp?stor\

eID=58721142377E4A0F9FFB63248E233F5D is one site I use for powder supps also.

GFCF is not an option here as both still cause seizures. fwiw, we also used

milybednum to bring down the copper and get that zinc/copper ratio in balance

when the pyroluria lable sprang up here. We've all been where you are so hang in

there - it gets easier, does not have to be expensive and is so much more

healthful.

>

> Hi Friends,

>

> I am feeling so frustrated. I feel very down today about our diet (GFCF,

> expensive and kids are very hit or miss about what they will eat) and of

> course supplements. Here is the thing... I recently started my boys (8 and

> 5) on high dose niacin (no flush inositol), 1 gr, TID plus b6 (100 mg p5p)

> and zinc since they both have pyroluria. I am starting to see big

> improvements, especially in my 5 yo. BUT, I am having such a hard time

> getting them to take the meds. I am very aware that coercion and force are

> not options, and not just bc they are not long-term solutions.

>

> I made these charts with their favorite characters on them and they get a

> check mark for each med taken (three times per day). When the charts are

> filled in, they will get something special: a trip to Great Wolf Lodge.

> Also, I have given them lego sets, and other toys. The thing is... this

> method is too expensive, and I feel it is spiraling way out of control.

> e.g., if my husband knew about all the lego and so, he would be angry with

> me. But, I don't know what else to do! I feel their lives are at stake!

>

> I am honest with them, to a degree about my frustration, but this issue is

> too big and difficult for a child! I just want to crawl under a rock...

>

> Also, we homeschool, which I am grateful for, but being with them all the

> time is hard. (I also have a 2 yo daughter). Their social and emotional

> needs are so, so draining.

>

> My mother has been so generous, and she helps me pay for groceries and

> supplements. Without her, I would be lost...

>

> I feel like groceries are such a huge expense. Of course, we don't eat out,

> but we spend nearly 2K per month on groceries/vitamins. What about you? Am

> I spending too much? Are there ways to make it less? Is there are way to

> make medicine time easier?

>

> HELP!

>

> Jean

>

February 21, 2012

yes i agree...can be very expensive gluten free stuff....for me my son didnt do well on the gluten free products...i make lots soups to stretch meat and beans....i use root veggies and eggs and protien smoothie in morning..

as far as gettin my son to eat his supps...it goes like this: here is your supp hurry up and take it so we can go to park. no? oh dang we cant go to park Ok! ill take supp:) yay! we can go to park now.

also i explain to him this is to make him feel better..kids are not stupid if they are told why we do what we do..

i hope this helps some...

channa

To: mb12valtrex Sent: Tuesday, February 21, 2012 10:56 AMSubject: need support! frustrated with kids...

Hi Friends,

I am feeling so frustrated. I feel very down today about our diet (GFCF, expensive and kids are very hit or miss about what they will eat) and of course supplements. Here is the thing... I recently started my boys (8 and 5) on high dose niacin (no flush inositol), 1 gr, TID plus b6 (100 mg p5p) and zinc since they both have pyroluria. I am starting to see big improvements, especially in my 5 yo. BUT, I am having such a hard time getting them to take the meds. I am very aware that coercion and force are not options, and not just bc they are not long-term solutions.

I made these charts with their favorite characters on them and they get a check mark for each med taken (three times per day). When the charts are filled in, they will get something special: a trip to Great Wolf Lodge. Also, I have given them lego sets, and other toys. The thing is... this method is too expensive, and I feel it is spiraling way out of control. e.g., if my husband knew about all the lego and so, he would be angry with me. But, I don't know what else to do! I feel their lives are at stake!

I am honest with them, to a degree about my frustration, but this issue is too big and difficult for a child! I just want to crawl under a rock...

Also, we homeschool, which I am grateful for, but being with them all the time is hard. (I also have a 2 yo daughter). Their social and emotional needs are so, so draining.

My mother has been so generous, and she helps me pay for groceries and supplements. Without her, I would be lost...

I feel like groceries are such a huge expense. Of course, we don't eat out, but we spend nearly 2K per month on groceries/vitamins. What about you? Am I spending too much? Are there ways to make it less? Is there are way to make medicine time easier?

HELP!

Jean

February 21, 2012

Ha ha! We do the same. Sent from my iPhone

yes i agree...can be very expensive gluten free stuff....for me my son didnt do well on the gluten free products...i make lots soups to stretch meat and beans....i use root veggies and eggs and protien smoothie in morning..

as far as gettin my son to eat his supps...it goes like this: here is your supp hurry up and take it so we can go to park. no? oh dang we cant go to park Ok! ill take supp:) yay! we can go to park now.

also i explain to him this is to make him feel better..kids are not stupid if they are told why we do what we do..

i hope this helps some...

channa

To: mb12valtrex Sent: Tuesday, February 21, 2012 10:56 AMSubject: need support! frustrated with kids...

Hi Friends,

I am feeling so frustrated. I feel very down today about our diet (GFCF, expensive and kids are very hit or miss about what they will eat) and of course supplements. Here is the thing... I recently started my boys (8 and 5) on high dose niacin (no flush inositol), 1 gr, TID plus b6 (100 mg p5p) and zinc since they both have pyroluria. I am starting to see big improvements, especially in my 5 yo. BUT, I am having such a hard time getting them to take the meds. I am very aware that coercion and force are not options, and not just bc they are not long-term solutions.

I made these charts with their favorite characters on them and they get a check mark for each med taken (three times per day). When the charts are filled in, they will get something special: a trip to Great Wolf Lodge. Also, I have given them lego sets, and other toys. The thing is... this method is too expensive, and I feel it is spiraling way out of control. e.g., if my husband knew about all the lego and so, he would be angry with me. But, I don't know what else to do! I feel their lives are at stake!

I am honest with them, to a degree about my frustration, but this issue is too big and difficult for a child! I just want to crawl under a rock...

Also, we homeschool, which I am grateful for, but being with them all the time is hard. (I also have a 2 yo daughter). Their social and emotional needs are so, so draining.

My mother has been so generous, and she helps me pay for groceries and supplements. Without her, I would be lost...

I feel like groceries are such a huge expense. Of course, we don't eat out, but we spend nearly 2K per month on groceries/vitamins. What about you? Am I spending too much? Are there ways to make it less? Is there are way to make medicine time easier?

HELP!

Jean

TODAY(Beta) â€¢

February 21, 2012

We homeschool, and have 3 children also (6, 4, 2). I feel your pain.

I'm with Channa and others on rewards being things they like to do anyway-

outside time, storytime, desert. . . If they don't start on the supplements, I

follow through. " Sorry, no stories. . . " This took a long time for me to do

effectively because the last thing I wanted to do was upset the girls. But I

added in things like " Oh, if you want to read stories now, just let me know,

we'll finish those supplements " . I don't know, it all sounds hokey, but over

time it has worked.

In the beginning we did treats after supplements- The zinc lozenges someone

mentioned. Or a spoonful of rice syrup. I always told Mia that the medicines

would help her eat more foods (starting at 2 years old), get out more, play

more, run more (balance and peripheral neuropathy issues early on). Immediately

it helped her to at least think of it as something good. And over time this

really sunk in. Whenever we have a gain of any kind, I point it out and tell her

I'm proud of her because she is doing the things, like taking supplements, that

are helping her get better. I started early on also talking to her about the

different things she was taking 'This cleans your liver " , " This helps your

tummy " . We went to a Slim Goodbody performance and learned all about how taking

care of your body is cool and good. We bought an illustrated body book and

started looking at different organs and systems. We sang Slim Goodbody songs,

and pointed out smokers ( " do they look happy or healthy? " - an easy question when

most are stuck hanging outside of a door somewhere, not particularly thrilled to

be there) and soda drinkers, candy eaters, etc. Granted, I probably went a

little overboard, but it really got Mia to take pride in taking care of herself.

I feel what you mean when you say that some of these things are too big for

children, so I try to break it down to what is big enough 'You'll be able to eat

more, do more, feel better, take fewer pills eventually " , etc etc. But I also

feel that I must make lemonade out of our lemons and for us, this has meant

raising a child who is in tune with her body and how everything she does and

puts into it affects her overall happiness and abilities. I just felt sincere

fear that if I didn't start from the beginning educating her, she would adhere

to this diet and supplement regimen her whole young life and then get out on her

own (yes!) and fall into serious decline. It had to be hers too. She had to own

it. The strategy really seems to be working. I cry sometimes because she has

missed out on a certain innocence of childhood this way, but it is better than

the alternative, which is going through this regimen without her personal

investment and understanding. I find ways to support opportunities for the

innocence of childhood for her in other ways, every chance I can.

Beside all of this, I have to say, in case you don't do this already, that if

there is ANY way you can get alone time, at any time, take it. You could find

some course or regular outing that your husband is gung ho about for you (sewing

class, gym, book club, support group. . ), it could be church once a week (that

can handle an Autistic child), it could be running to a friend's house after the

kids are in bed. . . get creative and find ANY reason. On my truly lowest,

lowest days, I realize that I haven't had any time to hear myself think (or not

think!!) in months (years at one point). Just this weekend, I laid the law down

once again to my husband that I need some time alone and he took two children to

Home Depot while our youngest took a nap. The silence was like an open window on

a Spring day.

Good good luck to you.

>

> yes i agree...can be very expensive gluten free stuff....for me my son didnt

do well on the gluten free products...i make lots soups to stretch meat and

beans....i use root veggies and eggs and protien smoothie in morning..

> as far as gettin my son to eat his supps...it goes like this: here is your

supp hurry up and take it so we can go to park. no? oh dang we cant go to park

Ok! ill take supp:) yay! we can go to park now.

> also i explain to him this is to make him feel better..kids are not stupid if

they are told why we do what we do..

> i hope this helps some...

> channa

>

> To: mb12valtrex

> Sent: Tuesday, February 21, 2012 10:56 AM

> Subject: need support! frustrated with kids...

>

> Hi Friends,

>

> I am feeling so frustrated. I feel very down today about our diet (GFCF,

expensive and kids are very hit or miss about what they will eat) and of course

supplements. Here is the thing... I recently started my boys (8 and 5) on high

dose niacin (no flush inositol), 1 gr, TID plus b6 (100 mg p5p) and zinc since

they both have pyroluria. I am starting to see big improvements, especially in

my 5 yo. BUT, I am having such a hard time getting them to take the meds. I am

very aware that coercion and force are not options, and not just bc they are not

long-term solutions.

>

> I made these charts with their favorite characters on them and they get a

check mark for each med taken (three times per day). When the charts are filled

in, they will get something special: a trip to Great Wolf Lodge. Also, I have

given them lego sets, and other toys. The thing is... this method is too

expensive, and I feel it is spiraling way out of control. e.g., if my husband

knew about all the lego and so, he would be angry with me. But, I don't know

what else to do! I feel their lives are at stake!

>

> I am honest with them, to a degree about my frustration, but this issue is too

big and difficult for a child! I just want to crawl under a rock...

>

> Also, we homeschool, which I am grateful for, but being with them all the time

is hard. (I also have a 2 yo daughter). Their social and emotional needs are so,

so draining.

>

> My mother has been so generous, and she helps me pay for groceries and

supplements. Without her, I would be lost...

>

> I feel like groceries are such a huge expense. Of course, we don't eat out,

but we spend nearly 2K per month on groceries/vitamins. What about you? Am I

spending too much? Are there ways to make it less? Is there are way to make

medicine time easier?

>

> HELP!

>

> Jean

>

> TODAY(Beta) â€¢ Powered by Yahoo!

> Schools charge students $5 for detentions

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>

February 21, 2012

We mix up my daughter's supplements in baby food and squirt them into her mouth

with syringe-like applicators, a little bit at a time, while she is watching a

fun show and laying in our lap. We follow up immediately with her favorite

drink, which is Neocate formula, and more laying in our lap and snuggling.

When it comes to GFCF food, we are lucky in Colorado. There is a discount

grocery store chain that sells discontinued or surplus food from fancy grocery

stores and health food stores. Their Loveland location is on my way home from

work. I stop by there a couple times a week. I don't know if you are in

Colorado, but in case anyone else lives or visits here, I wanted to mention it.

Their website is http://www.eshsdiscountgroceries.com/index.html

February 21, 2012

Hi there,

My son recently started swallowing capsules but before that I also used apple

sauce or other fruit sauce like to give his supps. There was a time when

he became totally defiant and refused to take any supps so I had to use some

coercion for a couple of days and then the defiance phase would disappear. I

have a feeling that when are kids become more aware of their surroundings, they

realize all of a sudden that other people around them are not taking so many

supps and are not on restricted diets and that causes them to show some

rebellion. When I need to use reward, I usually don't use any presents but

something simple like he will see his favorite video, or we will take him to his

cousin's place(his favorite place to visit) etc. I just wanted to reassure you

that it could just be a phase and they will come out of it. Just keep the

medicines a routine as our kids love to follow routines and maybe after few days

of following the same routine, they will not resist so much.

I get a lecture from my husband every week about the grocery expenses and

especially when he sees that my son is more miserable than before he was on gfcf

diet, he wants to stop all the diet. We usually get everything from Wegmans in

NJ and sometimes from Shoprite. I always tell my husband to see that our son is

not drinking any sodas. We don't buy any juices or junk foods that most of the

kids eat. But of course still this gfcf and organic shopping is too expensive.

For the supplements, try to explore if you can get some discount from the online

store if you buy in bulk. It would help even if you can save 20%. I think that

Kirkman products are available at a wholesale price if you buy in bulk.

Good luck

is

-

February 22, 2012

Oh, friends, thank you so much for all your kind and thoughtful responses! Yesterday was from hell... The ingredient that I seem to need more than anything else is understanding. And I know y'all understand!Great money saving tips, everyone. I find it is hard bc we do try to stick to traditional foods (Weston A Price) for the most part. We did raw dairy before becoming cf in addition to GF. Who is stressed out bc of missing dairy? Mom, that's who! Lol. We are cf for six weeks so far. Also, I am taking more initiative to induct my husband into this world so that he will understand. I read millions of books, talk to doctors, and so forth and so on. He didnt do any of that. No more. It is too hard to just be me. You people are amazing! Taking care of everyone and giving support to a stranger on a email list! Wow!I am grateful for all of you!<3Jean

Hi there,

My son recently started swallowing capsules but before that I also used apple sauce or other fruit sauce like to give his supps. There was a time when he became totally defiant and refused to take any supps so I had to use some coercion for a couple of days and then the defiance phase would disappear. I have a feeling that when are kids become more aware of their surroundings, they realize all of a sudden that other people around them are not taking so many supps and are not on restricted diets and that causes them to show some rebellion. When I need to use reward, I usually don't use any presents but something simple like he will see his favorite video, or we will take him to his cousin's place(his favorite place to visit) etc. I just wanted to reassure you that it could just be a phase and they will come out of it. Just keep the medicines a routine as our kids love to follow routines and maybe after few days of following the same routine, they will not resist so much.

I get a lecture from my husband every week about the grocery expenses and especially when he sees that my son is more miserable than before he was on gfcf diet, he wants to stop all the diet. We usually get everything from Wegmans in NJ and sometimes from Shoprite. I always tell my husband to see that our son is not drinking any sodas. We don't buy any juices or junk foods that most of the kids eat. But of course still this gfcf and organic shopping is too expensive. For the supplements, try to explore if you can get some discount from the online store if you buy in bulk. It would help even if you can save 20%. I think that Kirkman products are available at a wholesale price if you buy in bulk.

Good luck

is

-

February 22, 2012

Just a note on your husband's participation.Don't push him too much. It could be overwhelming for him and he could shut himself down, affecting him more than he would otherwise show.This is the case in my household. I read at least 3 books on autism every week, spend truck load of time on the internet (listserves and forums), always in touch with school district, and the school. attend parent education workshop every 2 weeks, interact with therapists. Collect ABA data at home. Crunch all information and figure out my ways of treating my son. My wife doesn't do any of it, not just because she doesn't want to but she finds it overwhelming and next thing I notice that she is sick with flu and / or fever. In short, it doesn't help. I do involve her in final decisions though but otherwise I am one man army.

One thing though, we have only one kid.. So whatever you do, just be careful. he may not be doing it intentionally.Peace...Noel

Oh, friends, thank you so much for all your kind and thoughtful responses! Yesterday was from hell... The ingredient that I seem to need more than anything else is understanding. And I know y'all understand!

Great money saving tips, everyone. I find it is hard bc we do try to stick to traditional foods (Weston A Price) for the most part. We did raw dairy before becoming cf in addition to GF. Who is stressed out bc of missing dairy? Mom, that's who! Lol. We are cf for six weeks so far.

Also, I am taking more initiative to induct my husband into this world so that he will understand. I read millions of books, talk to doctors, and so forth and so on. He didnt do any of that. No more. It is too hard to just be me.

You people are amazing! Taking care of everyone and giving support to a stranger on a email list! Wow!I am grateful for all of you!<3Jean

Hi there,

My son recently started swallowing capsules but before that I also used apple sauce or other fruit sauce like to give his supps. There was a time when he became totally defiant and refused to take any supps so I had to use some coercion for a couple of days and then the defiance phase would disappear. I have a feeling that when are kids become more aware of their surroundings, they realize all of a sudden that other people around them are not taking so many supps and are not on restricted diets and that causes them to show some rebellion. When I need to use reward, I usually don't use any presents but something simple like he will see his favorite video, or we will take him to his cousin's place(his favorite place to visit) etc. I just wanted to reassure you that it could just be a phase and they will come out of it. Just keep the medicines a routine as our kids love to follow routines and maybe after few days of following the same routine, they will not resist so much.

I get a lecture from my husband every week about the grocery expenses and especially when he sees that my son is more miserable than before he was on gfcf diet, he wants to stop all the diet. We usually get everything from Wegmans in NJ and sometimes from Shoprite. I always tell my husband to see that our son is not drinking any sodas. We don't buy any juices or junk foods that most of the kids eat. But of course still this gfcf and organic shopping is too expensive. For the supplements, try to explore if you can get some discount from the online store if you buy in bulk. It would help even if you can save 20%. I think that Kirkman products are available at a wholesale price if you buy in bulk.

Good luck

is

-

February 22, 2012

Noel, you are right can't push the husband too much, I'm doing everything myself too and he usually follows and do what I ask him to do but all of a sudden he would tell me "we need to stop all the biomed ,it does hurt him more than help him(my son is a nonresponder)" .but how can I give up so I usually bring it up that you don't do any research or don't know much you can't stop me. so I usually win the battle and everything start all over again. I'm so tired doing reasearch and conviencing my husband that we can't give up . Lili To: mb12valtrex Sent: Wednesday, February 22, 2012 9:05 AM Subject: Re: Re: need support! frustrated with kids...

Just a note on your husband's participation.Don't push him too much. It could be overwhelming for him and he could shut himself down, affecting him more than he would otherwise show.This is the case in my household. I read at least 3 books on autism every week, spend truck load of time on the internet (listserves and forums), always in touch with school district, and the school. attend parent education workshop every 2 weeks, interact with therapists. Collect ABA data at home. Crunch all information and figure out my ways of treating my son. My wife doesn't do any of it, not just because she doesn't want to but she finds it overwhelming and next thing I notice that she is sick with flu and / or fever. In short, it doesn't help. I do involve her in final decisions though but otherwise I am one man army.

One thing though, we have only one kid.. So whatever you do, just be careful. he may not be doing it intentionally.Peace...Noel

Oh, friends, thank you so much for all your kind and thoughtful responses! Yesterday was from hell... The ingredient that I seem to need more than anything else is understanding. And I know y'all understand!

Great money saving tips, everyone. I find it is hard bc we do try to stick to traditional foods (Weston A Price) for the most part. We did raw dairy before becoming cf in addition to GF. Who is stressed out bc of missing dairy? Mom, that's who! Lol. We are cf for six weeks so far.

Also, I am taking more initiative to induct my husband into this world so that he will understand. I read millions of books, talk to doctors, and so forth and so on. He didnt do any of that. No more. It is too hard to just be me.

You people are amazing! Taking care of everyone and giving support to a stranger on a email list! Wow!I am grateful for all of you!<3Jean

Hi there,

My son recently started swallowing capsules but before that I also used apple sauce or other fruit sauce like to give his supps. There was a time when he became totally defiant and refused to take any supps so I had to use some coercion for a couple of days and then the defiance phase would disappear. I have a feeling that when are kids become more aware of their surroundings, they realize all of a sudden that other people around them are not taking so many supps and are not on restricted diets and that causes them to show some rebellion. When I need to use reward, I usually don't use any presents but something simple like he will see his favorite video, or we will take him to his cousin's place(his favorite place to visit) etc. I just wanted to reassure you that it could just be a phase and they will come out of it. Just keep the medicines a routine as our kids love to follow routines and maybe after few days of following the same routine, they

will not resist so much.

I get a lecture from my husband every week about the grocery expenses and especially when he sees that my son is more miserable than before he was on gfcf diet, he wants to stop all the diet. We usually get everything from Wegmans in NJ and sometimes from Shoprite. I always tell my husband to see that our son is not drinking any sodas. We don't buy any juices or junk foods that most of the kids eat. But of course still this gfcf and organic shopping is too expensive. For the supplements, try to explore if you can get some discount from the online store if you buy in bulk. It would help even if you can save 20%. I think that Kirkman products are available at a wholesale price if you buy in bulk.

Good luck

is

-

February 22, 2012

:)

I just want to add that things definitely got worse in our house for a couple

(few?) of months when we went CF. It did seem like withdrawal from the

opiate-like undigested protein. It turned around and the weepiness, neediness,

up and down of moods settled down.

How much magnesium are you doing? 400mg of mag glycinate twice a day for us

really helped. Also, phospohorous was a big one for us as our diet was

deficient. But if you are doing a lot of meat (W. A. Price/GAPS), this shouldn't

be an issue.

>

> > Hi there,

> > My son recently started swallowing capsules but before that I also used

apple sauce or other fruit sauce like to give his supps. There was a

time when he became totally defiant and refused to take any supps so I had to

use some coercion for a couple of days and then the defiance phase would

disappear. I have a feeling that when are kids become more aware of their

surroundings, they realize all of a sudden that other people around them are not

taking so many supps and are not on restricted diets and that causes them to

show some rebellion. When I need to use reward, I usually don't use any presents

but something simple like he will see his favorite video, or we will take him to

his cousin's place(his favorite place to visit) etc. I just wanted to reassure

you that it could just be a phase and they will come out of it. Just keep the

medicines a routine as our kids love to follow routines and maybe after few days

of following the same routine, they will not resist so much.

> > I get a lecture from my husband every week about the grocery expenses and