Re: Re: Diet/and other frustrations

[Guest guest]

Hey, Donna.

Sorry to hear the diet is giving you so much frustration. I know what you

mean....in addition to the specific items each child has to stay away from,

there are the general items, such as no berries or tropical fruits. It can be

maddening. We've been doing well finally, with most of the kids EOS levels down;

however, I just noticed that 's eczema is back on his eye lid. He is the

one I can trust not to cheat, so obviously something is going on there. I'm sure

I will hear it next Friday. Regarding the red cheeks, Noah gets this and it's

usually related to heat, a food infraction, or an illness of some sort, usually

a cold or bronchitis. There is a lot going around right now; is it possible

isn't feeling well and isn't articulating it? Have you checked into the

ingredients in the Lamisil? Is it possible there's dairy or something else in it

that's irritating his system. Since the kids have been off dairy for so long,

they seem to be way more

sensitive to dairy infractions on the rare occasions they have them.

We went through a " stalled " period with Noah after Christmas break. It took the

entire month of January to get him back on track. Behaviors we hadn't

experienced for more than a year resurfaced with a vengeance. It was maddening!

He even realized that if he told me he was " sick " or something hurt, he could

stay home from school (both Josh and Elijah were sick in January). A couple of

things we did for school worked: we used Wii as a reward if he had a good day at

school and did his work. We also used treats, such as popcorn or cookies, that

he could earn for snack recess if he did his work. This worked great! Some kids

just need extrinsic rewards to get through work that bores or frustrates them.

At home, if Noah gives me a hard time about doing homework, I give him a

choice: sit on the steps and then do homework, or just do homework. He usually

chooses to come back to the table and do homework.

Regarding the spaciness, that's a tough one. Is it happening in any particular

environment or is it random?

HTH,

Robyn

________________________________

From: DonnaB <donnaaron@...>

Sent: Sat, February 27, 2010 3:05:24 PM

Subject: Re: Diet/and other frustrations

I could use some similar encouragement. I am just SO SICK of eliminating,

eliminating, and ELIMINATING things from my son's diet and not seeing any

difference, in functioning and behavior, or in the redness of his cheeks Dr. G

says are a sign of food allergies and means inflammation in the brain. It

actually has always seemed to me that his cheeks more often get like that when

he plays exciting video games, not when he has eaten a " bad " food. On the

other hand, (ds) used to get red EARS after eating certain foods, but after

eliminating the main offenders, the red ears stopped.

Here's another thing I've been feeling discouraged and frustrated about. My son

just seems...stalled. He was doing so well, improving so much, until just

before Christmas. Then we switched antifungals (from Nizarol to Diflucan) and

he just sort of went backwards. Diflucan has always been kind of dicey for him,

so we stopped now switched again -- this time to Lamisil. That was a little

under three weeks ago, and he's still pretty spacey and disconnected and hasn't

brightened up at all. I'm just not sure if he could have gone through die-off

on the Lamisil since he had JUST switched to Diflucan a few weeks prior and

probably went through die-off with that, or if he is still just adjusting to the

Lamisil chemically. OR, is it a food thing, as Dr. G has been adamant that it

is? There is virtually no difference between his diet before Christmas, when he

was doing just great, and his diet now. In fact, we have since taken out a

couple of things that

Dr. G thought be offenders, and NO. DIFFERENCE.

Dr. G has also been telling me that if can focus on the things that

interest him, he should be also able to focus on the things that he doesn't like

(i.e., it is a behavioral issue and not a symptom of his illness), and that

instead of " redirection, " he should be disciplined in some way if he won't

focus on the things he is less interested in. My contention is that the reason

he can focus on the things he is interested in is that he can tune out sensory

interference that bothers him, but can't if his interest can't be held. I know

he still has sensory issues because he still covers his ears during parts of

movies that aren't necessarily loud, has been walking in circles a lot lately,

and he scripts and is often completely oblivious when he is outside. Yesterday

his school aide told me that he walked right through a basketball court during a

game -- no awareness of what was going on around him AT. All. Yet Dr. G keeps

telling me that these

things are somehow either behavioral or food-related. I am really feeling at

wit's end here. Maybe things will start to get better again soon (they always

do, but this has been a particularly long slump) and this vent will seem

unnecessary in a week or two, but for now...I don't know. So any encouragement

or insight would be greatly appreciated.

Edited to add: He's started his third course of Imunovir a month ago.

TIA for your thoughts,

Donna

>

> Hi All,

>

> Is anyone willing to share some feedback/encouragem ent regarding Dr. G's diet

for our kids? We have been doing it for 3 years now and I am growing fatigued

from it (and falling off the wagon). Of course, Dr. G says how important it is,

but when we occasionally " cheat " , we don't see any negative results, until we

gradually cheat more and more. Then I think, " Well, maybe is one of

those kids who does not need the diet " . Meanwhile, three months go by and were

wondering if the diet needs to be adjusted.

>

> We are adamant about no dairy, but I think we give far too many carbs. Have

any of you gone off the diet and still been able to maintain improvement with

the protocol?

>

> Maybe I just need a kick square in the pants to put me back on track! Any

comments/suggestion s appreciated.

>

> Thanks in advance,

>

>

[Guest guest]

Hi Donna.

 

Similiar things have happened with my son before and probably will happen

again.  It seems like we follow the diet and medication, keep up all the work

at home in regards to development and catch up with school work, trying to

socialize him and do the same things other kids are doing, and then for some

unknown reason he goes backwards.  I have finally realized that it is usually

short-term (but keep in mind if any particular medication mix is not working for

your son) and after he comes out of it, he is back on track and seems better.

 

My son is eleven has quite a long way to go, but 500-1000% better from when he

was young and very low-functioning. Right now, your child probably doesn't have

the discipline or ability for being able to concentrate on preferred on

non-preferred tasks.  This takes time, sometimes I have found you have to break

it up to a smaller series to expectations, and also give your child a prep talk

before or after something has taken place.  In addition, our kids do not seem

to clue into what other kids automatically do, so even the everyday things need

to be taught. 

 

 My son and I used to review good and bad behaviors and why on a sheet of

paper.  This helped because it didn't happen while a negative behavior was

taking place and he had been apt to like both negative and positive attention. 

After a while, most of this negative has gone away and our main issues these

days are less behavior and more just trying

to keep improving his attention, improve his social language, and catch him up

with his school work.  As you can see, it is a long way to go but compared to

before, we are in a much different place.

 

In the end, I am trying to say maybe check out the medications again and check

with yourself to see if your son has regressed in the past and then came through

again.  Diet is still so important, but I will admit I will let my son have an

occasional cookie as long as it does not contain dairy. This keeps him from

sneaking and from what I believe will be developing food issues later in life.

 For my son, I realized most of these regression times were temporary but they

seemed to last forever.  I hope this ends up being the same case with you.

 

You do not mention how long you have been on the protocol, but some kids do not

recover as quickly as others.  My son has been ongoing since he was four.  

It has been a lot of work, so many frustrations and regressions, so little

cooperation with the outside world(I could go on and on here), but somehow if

you can keep from letting all this pressure from getting to you, your son will

do so much better.   

 

Take care.

 

Lynn 

From: DonnaB <donnaaron@...>

Subject: Re: Diet/and other frustrations

Date: Saturday, February 27, 2010, 6:05 PM

 

I could use some similar encouragement. I am just SO SICK of eliminating,

eliminating, and ELIMINATING things from my son's diet and not seeing any

difference, in functioning and behavior, or in the redness of his cheeks Dr. G

says are a sign of food allergies and means inflammation in the brain. It

actually has always seemed to me that his cheeks more often get like that when

he plays exciting video games, not when he has eaten a " bad " food. On the other

hand, (ds) used to get red EARS after eating certain foods, but after

eliminating the main offenders, the red ears stopped.

Here's another thing I've been feeling discouraged and frustrated about. My son

just seems...stalled. He was doing so well, improving so much, until just before

Christmas. Then we switched antifungals (from Nizarol to Diflucan) and he just

sort of went backwards. Diflucan has always been kind of dicey for him, so we

stopped now switched again -- this time to Lamisil. That was a little under

three weeks ago, and he's still pretty spacey and disconnected and hasn't

brightened up at all. I'm just not sure if he could have gone through die-off on

the Lamisil since he had JUST switched to Diflucan a few weeks prior and

probably went through die-off with that, or if he is still just adjusting to the

Lamisil chemically. OR, is it a food thing, as Dr. G has been adamant that it

is? There is virtually no difference between his diet before Christmas, when he

was doing just great, and his diet now. In fact, we have since taken out a

couple of things that Dr. G

thought be offenders, and NO. DIFFERENCE.

Dr. G has also been telling me that if can focus on the things that

interest him, he should be also able to focus on the things that he doesn't like

(i.e., it is a behavioral issue and not a symptom of his illness), and that

instead of " redirection, " he should be disciplined in some way if he won't

focus on the things he is less interested in. My contention is that the reason

he can focus on the things he is interested in is that he can tune out sensory

interference that bothers him, but can't if his interest can't be held. I know

he still has sensory issues because he still covers his ears during parts of

movies that aren't necessarily loud, has been walking in circles a lot lately,

and he scripts and is often completely oblivious when he is outside. Yesterday

his school aide told me that he walked right through a basketball court during a

game -- no awareness of what was going on around him AT. All. Yet Dr. G keeps

telling me that these things

are somehow either behavioral or food-related. I am really feeling at wit's end

here. Maybe things will start to get better again soon (they always do, but this

has been a particularly long slump) and this vent will seem unnecessary in a

week or two, but for now...I don't know. So any encouragement or insight would

be greatly appreciated.

Edited to add: He's started his third course of Imunovir a month ago.

TIA for your thoughts,

Donna

>

> Hi All,

>

> Is anyone willing to share some feedback/encouragem ent regarding Dr. G's diet

for our kids? We have been doing it for 3 years now and I am growing fatigued

from it (and falling off the wagon). Of course, Dr. G says how important it is,

but when we occasionally " cheat " , we don't see any negative results, until we

gradually cheat more and more. Then I think, " Well, maybe is one of

those kids who does not need the diet " . Meanwhile, three months go by and were

wondering if the diet needs to be adjusted.

>

> We are adamant about no dairy, but I think we give far too many carbs. Have

any of you gone off the diet and still been able to maintain improvement with

the protocol?

>

> Maybe I just need a kick square in the pants to put me back on track! Any

comments/suggestion s appreciated.

>

> Thanks in advance,

>

>