Re: P.S. we only eliminated the big triggers

[Guest guest]

& Marcia,

Thank you so much for you thoughtful responses!

, I think your OCD may be a blessing, in that you are able to really dial

in to what the responses/reactions are! I feel like I usually finally figure it

out, but not nearly like you seem to be able to do!

Marcia, I've always been inspired and encouraged by you and your son's story!

We've been a patient of Dr. G for 9 years and can only hope and pray (and work,

too!) to be even remotely close to where is someday!

I started to reply to the two of you privately, but maybe there are others who

have a struggle similar to ours. My Josh will be 14 next month (seeing Dr. G

since he was 4-1/2) and even Dr. G has told us he is one of his more difficult

patients. Josh is basically non-verbal – he has a pretty large vocabulary, but

no real language. He can (sometimes) respond to yes/no questions and request his

basic needs, but that's really about all. He was just potty-trained within the

past year (though we still have some challenges), he's not able to do many basic

things easily/correctly – like dress himself, shower, brush his own teeth, eat

with a spoon without turning it over, etc. With all of that, he is the happiest,

most laid back, compliant, lovable kid on the planet!

I think my point of giving that background is that because of his lack of

language and no behavioral issues, it makes it very difficult to know what's

going on with him. So I sometimes wonder if he's a mystery to Dr. G as well.

Along with the protocol, we have done years of private speech therapy and OT. It

makes it very difficult to know that we're doing the same things that others do,

but without the same results. So when we suddenly need to cut out things from

our diet that didn't seem to be a problem 3 months ago, I guess I wonder if

we're sort of grasping at straws. And not that I want to give him anything that

would harm him, but I also don't want to deprive him if it's not truly causing

issues. I probably do allow too many carbs, but I am diligent about the main

things ... dairy, whole grains, milk chocolate, limit sugars. We've also

eliminated all nuts, berries and cinnamon. I have conceded to make the further

eliminations (no corn and take almost all of the carbs out of his diet

completely) and see what the next bloodwork shows, but I am admittedly feeling

very defeated and frustrated at the moment.

Marcia, I've always subscribed to that thought process of fighting the big

fights and knowing that I can only do what I can do... just makes it hard when

you feel like your best isn't good enough when my son (all of our kids) deserves

so much more! I know you've been there. And I believe in Josh the way I know you

always believed in . I know he's " in there. "

Sorry for the long post... guess I just needed to vent a little!

Thanks again for your kind words,

>

> ,

>

> We only eliminated the big triggers from 's diet. Dairy being the most

> important one to eliminate for him and too many sugars. You can make

> yourself crazy with diet. Try to eliminate the foods in the most allergic

> column of the allergy blood test. used to come up off the charts

> allergic to garlic but now it is okay. You can drive yourself crazy with

> worrying what you can and cannot feed them. Some find it so taxing and

> restrictive that they eventually give up the diet and even the medical

> treatments. That is a big mistake. The medical component is essential to

> recovery.

>

>

>

>

> Instead, I wish parents would just try to concentrate on eliminating the big

> triggers that greatly affect their child's immune systems instead of wasting

> hours washing pink dye off the Diflucan tablets. There are

> only a finite number of hours in each day and you need to spend your time on

> the things that will make the biggest difference for your child instead of

> sweating the small stuff. It would be better to spend this time working to

> teach your child the things they missed.

>

>

>

>

> Each kid is different and you need to do the best you can without making

> yourself or your child apprehensive about what they eat. It is important

> that your kid not feel totally different and that you do not wake up every

> morning (like I did) afraid to feed your child anything because it may cause

> a reaction. For most kids with immune problems, the most offending foods are

> usually dairy, whole wheat, and milk chocolate. And foods are not the only

> allergens that affect our kids. I still use " All " laundry detergent with no

> dyes and perfumes " to alleviate some stress on 's immune system.

>

> Best,

>

> Marcia

>

>

>

>

>

>

[Guest guest]

Thanks Lynn. I just ordered this book from Amazon. It is called " Raising

a Child With Autism: A Guide to Applied Behavior Analysis for Parents " by

Shira Richman. It was only $0.25 (used) plus shipping. A bunch of titles

showed up that look good when I ordered. Does anyone have any others and

does anyone have a good ABA provider in Fillmore, CA for Karla?

Thanks,

Marcia

[Guest guest]

,

I read this and knew immediately that this is what my son (15 yo, mainstreamed,

but autistic) goes through. I have seen him go up and down too many times to

count. I have lost family support and

my significant other of 6 years when he crashes. They do not understand that it

is medical, not behavioral, and that I just can't take him to a doctor to fix

it. Not only is hard to find the right doctor, when you do, you must pay out of

pocket, and frankly Visa and Master Card are done with me.

People around us also do not want to watch him in pain, so they turn their

backs. It is very hurtful for me, I just hope he is enough in his own world to

not realize it.

My question to you is, is it right to keep him at home when he is going through

these crashes? I have kept him home from school to prevent disipline referrals

and dragging him through hell unaccompanied by me. I'm not a home schooler, and

I must work, so I can never keep him home very long. Just a few days, and then

he must return even though he really isn't ready, all he had was an opportunity

to rest.

We are seeing Beth Latimer in Bethesda for PANDAS in mid November. I am hoping

to get him back on an upward swing with her help, but I'd like to hear any

advice you have as to how I should help him handle PANDAS flares. Stay at home

or go to school? He can stay by himself now, so I do not need to take off work.

He is usually capable of completeing the missed assignments at home too. Thanks

in advance for any advice you have.

Jen

PS~I'm so glad you mentioned the little leaps. When I see him do this I thought

it was him being happy, and that gives me some comfort.

> >

> > ,

> >

> > We only eliminated the big triggers from 's diet. Dairy being the most

> > important one to eliminate for him and too many sugars. You can make

> > yourself crazy with diet. Try to eliminate the foods in the most allergic

> > column of the allergy blood test. used to come up off the charts

> > allergic to garlic but now it is okay. You can drive yourself crazy with

> > worrying what you can and cannot feed them. Some find it so taxing and

> > restrictive that they eventually give up the diet and even the medical

> > treatments. That is a big mistake. The medical component is essential to

> > recovery.

> >

> >

> >

> >

> > Instead, I wish parents would just try to concentrate on eliminating the big

> > triggers that greatly affect their child's immune systems instead of wasting

> > hours washing pink dye off the Diflucan tablets. There are

> > only a finite number of hours in each day and you need to spend your time on

> > the things that will make the biggest difference for your child instead of

> > sweating the small stuff. It would be better to spend this time working to

> > teach your child the things they missed.

> >

> >

> >

> >

> > Each kid is different and you need to do the best you can without making

> > yourself or your child apprehensive about what they eat. It is important

> > that your kid not feel totally different and that you do not wake up every

> > morning (like I did) afraid to feed your child anything because it may cause

> > a reaction. For most kids with immune problems, the most offending foods are

> > usually dairy, whole wheat, and milk chocolate. And foods are not the only

> > allergens that affect our kids. I still use " All " laundry detergent with no

> > dyes and perfumes " to alleviate some stress on 's immune system.

> >

> > Best,

> >

> > Marcia

> >

> >

> >

> >

> >

> >