Re: Re: Still keeping up the fight

February 5, 2011

Yes, he was tested for viruses. His titerse levels were normal. He has nor tried

valtrex but I have done ooo and ole. We did those for a long time and didn't see

any gains. I am talking with the NP next Friday and I am going to ask her for a

trial run of valtrex. Is that what worked for your son?

Sent from my iPhone

On Feb 5, 2011, at 2:03 PM, " laura19982005 " <laura19982005@...> wrote:

>

> Did he get any testing for viruses or trial of antivirals? My son is eight and

that is what helped my child most at this point. And we still have a ways to go.

>

> >

> > I am hoping I am not alone in feeling extremely discouraged by my childs

progress. He is almost three years old and autistic. I have tried a ton of

things for

> > my son without any real gains in his condition. I continue to give him all

his supplements, taken him on and off to see if I could see any changes. I have

added things back one at a time twice now. The only thing I saw was that GABA

increased his aggressiveness. I had him on the scd diet for for months and saw

no gains. He continues to be Gf/cf/sf and soy free. I have used a homeopath,

DAN, flew him from MI to Seattle to meet with Dr. Cutler and a nurse practioner.

We went over everything regarding my son and developed a plan of action. I have

treated for yeast, parasites, and bacteria. I know there are still a ton of

things that I could still try. I am just feeling very scared that my son is

never going to get better. It breaks my heart everyday not seeing any

improvements. He never stops moving from the second he wakes up. He throws

everything, hits, bites, and doesn't listen to a word I say. We are only on

round three of DMPS. I was hoping I would see some type of sign that this is

going to help him but he is more out of control then ever! I would love some

hope at this point that things can still get better. This situation is taking a

huge toll on my family's well being. I apologize for carrying on.

> >

>

February 6, 2011

I agree. We wasted a lot of years and thousands and thousands of dollars

trying this and that and seeing this doctor and that, and last summer it

finally hit me that the unbelievable amounts of money we had wasted seeing

our DAN...

I had every chance to listen to Andy back in 2002, and for fear didn't do

it. I was scared and thought I had to have an MD. It is even sadder that I

found a DO who was willing to consult with ANDY, but we were just so afraid

to chelate at all.

Now, I'd give anything if we had started AC THEN. My son had a long

plateau, and that led us to try IV EDTA last summer with frightening

results, and then it dawned on me that the things that helped were the early

things I learned on A-M, and it made me think about all the things Andy

conveyed to us early on, and we decided to go back. Stick with the things

that worked for us like diet and metabolic supports and do AC.

My son, who has needed antibiotics (supposedly) about every two to three

weeks since he was fifteen months old, who has needed asthma meds regularly

since he was three week after week, has not needed a single prescription med

since starting AC. He has not had any asthma symptoms since beginning ACE.

We are only on round four, but I definitely see improvement in auditory

processing. Things aren't perfect. I want the stimming to disappear. This

is just a personal thing that has bothered me since the beginning. However,

if getting the metals out helps his overall health but stimming remained as

some personal quirk, I don't care about that. I only care in the sense that

I see it as a sign of yeast. I just think when that stops, then I will

begin to believe we finally have yeast under control.

It does get a little discouraging (okay a lot) at times. WE had periods

where it just seemed nothing was working. I cried a lot at times. I just

kept trying new things. It is interesting to me that the things that really

worked were the least expensive of all interventions.

I believe you a e on the right track with AC and what you are doing. You

have to hang on and hang in. For us, we sat down in the beginning when we

were very skeptical, and we talked about trying this and that, and we

decided that we would rather try for as long as it took than do nothing at

all. My son will be forty someday, and I would still try. My tombstone

will read, " She died trying. " Because I KNOW this was not something he was

born with or developed out of the blue without cause. Something damaged his

neuro and biologic chemistry and I just have to do what I can to return his

body to normal functioning to the extent possible.

Nine years ago they told us to institutionalize him --that he would " never "

do.... take your pick of any normal thing a person can do. And now he has

proved them wrong on most accounts. All he has left to discount is driving

a car, living independently, getting into college, and getting married.

I just want to give him the things he needs to lead an independent life and

the skills he needs to have friends, so that when we are no longer around,

he has a life of his own and does not feel alone or isolated.

Every person has to decide for themselves. What if my son had shown no

improvement in nine years? I can's say for sure, but knowing myself, I

think I'd still be trying to figure it out.

For me, faith has played a vital role. I am NO holy roller. I'm a

non-practicing Catholic but consider myself a Christian, though I fear a

church roof might cave in if I appeared. But during many plateaus, I

prayed, and I was lead to something that worked in some degree.

Look at your notes and review. We recorded even slight improvements after

adding things one at a time. If we saw event he slightest improvement we

kept it. In some cases, the adverse was so apparent that we removed it

quickly say such as Cysteine -- which affected our son badly.

We looked at his labs. Notice what is high and what is too low. find out

what can cause these disparities. The overall cause, I think of these

chemical disparities has at the root cause toxins -- worst of all mercury.

We had extensive genetic testing done early on, and pretty much every

possible genetic cause was ruled out. Many hospitals will do additional

genetic testing for a reasonable fee to rule out genetic metabolic

disorders.

Sometimes, when it was overwhelming, we just kept the basics in place and

took a step back and took time off to regroup.

Write down your goals. It is not as much what you are willing TO DO to

achieve the goals, but more of what you are willing to GIVE UP in order to

achieve the goal that could be the deciding factor.

What do you need to keep your sanity in tact and preserve your family, as

well? These are important things to answer.

From what I read, you are early in AC, so give it time, if you can do so and

keep family and sanity in tact.

Review your notes and labs and look for clues and try to see something you

may have missed.

someone suggested ruling out viruses and or bacteria. It is worth

investigating.

I hope you may find the strength to keep going.

Hugs.

February 7, 2011

I agree, that sounds and looks like an awful lot to be giving him. If you

are not yet a member of the RFA group, ask to join. There are supplement

files, and the moderators are very knowledgeable and can help. You need to

go down your list and note why you are giving him each thing. It is

important to know the purpose.

We give the basics:

multi vitamin/mineral

C,D3, E,

Zinc

EFA (flax seed meal)

enzymes

Fish oil caps

magnesium

GSE

ACE

Epsom salt baths

Probiotics

Acetyl-L-Carnitine

Calcium

I also think you are giving too much and too many things. I think you need

to go back to the basics, and then add one thing at a time and wait and see

if you notice any positive changes.

The first thing I noticed was that you are giving 50 mg of ACE to a three

year old. Did you start this low and slow? Did you add each supplement one

by one and take notes to see if it helped? Every child is different, but my

son weighs 142 pounds, and for him I found that about half a capsule of ACE

helps while more than that makes him very hyper.

Do you notice red ears or cheeks with giving GSE? This happens to my son if

we give him too much.

Again, the moderators on the RFA group could help you more with this. The

files section is very helpful.

February 7, 2011

Thank you for answering me back. I will join the RFA group. I never noticed him

having any reaction to the GSE. That has been a big part of the problem that I

have had a hard time noticing any difference with what I add or don't add. I did

start him on the ACE at 50mg right out of the gate. There wasn't any noticeable

changes. Can I ask what type of multi/mineral you like to you? Again thanks for

your thoughts. Kathy

Sent from my iPhone

On Feb 7, 2011, at 3:11 AM, Haven DeLay <hdelay@...> wrote:

> I agree, that sounds and looks like an awful lot to be giving him. If you

> are not yet a member of the RFA group, ask to join. There are supplement

> files, and the moderators are very knowledgeable and can help. You need to

> go down your list and note why you are giving him each thing. It is

> important to know the purpose.

>

> We give the basics:

>

> multi vitamin/mineral

> C,D3, E,

> Zinc

> EFA (flax seed meal)

> enzymes

> Fish oil caps

> magnesium

> GSE

> ACE

> Epsom salt baths

> Probiotics

> Acetyl-L-Carnitine

> Calcium

>

> I also think you are giving too much and too many things. I think you need

> to go back to the basics, and then add one thing at a time and wait and see

> if you notice any positive changes.

>

> The first thing I noticed was that you are giving 50 mg of ACE to a three

> year old. Did you start this low and slow? Did you add each supplement one

> by one and take notes to see if it helped? Every child is different, but my

> son weighs 142 pounds, and for him I found that about half a capsule of ACE

> helps while more than that makes him very hyper.

>

> Do you notice red ears or cheeks with giving GSE? This happens to my son if

> we give him too much.

>

> Again, the moderators on the RFA group could help you more with this. The

> files section is very helpful.

>

February 7, 2011

Liz,

Yes, we did the ALCAT with . He showed sensitivity to honey. I have to

assume that raw honey would also be one we should avoid? I will take him back

down to just the basics and see if we notice any changes. It's always hard to

tell any difference with him because he doesn't have big changes. I don't feel

like I am very good at reading the changes. They are very subtle if any. Have

Many people done the Dr. Yasko test? I think it might be worth while. There were

surprisingly only two reviews on the web site. I have a phone consult with

this week and I am interested in trying a couple of new things. I would like to

try Valtrex at some point. I know this can be stressful on the liver and kidneys

so it really would be a good idea to just go back to the basics. Was there

anything on my sons list that screamed big no no? We do the Epsom salt baths

every nite and use the Kirkman cream on the nights we can't make it happen. I

will be stopping today to pick up some aloe juice? Should I see a change in his

stools when I first try this? Thank you so much for getting back with me. It

helps to know I have other

Mommy's for support! Kathy

Sent from my iPhone

On Feb 7, 2011, at 1:58 AM, " Liz " <elizabethsoliday@...> wrote:

> My first instinct is that you are giving too much. Of course some people will

not agree. Here is the deal, his kidneys and liver are probably already

stressed, so sometimes the healing process can take place with LESS supplements

rather than more (my opinion). Try to go food based:

>

> 1. aloe juice (or just inside of aloe leaf) in smoothie with pear juice,

banana, and ice. Aloe has good antiparasite properties and was an excellent gut

healer for my son.

>

> 2. magnesium, magnesium, magnesium (epsom salt baths, mag chloride, mag

citrate, with taurine for better absorption) Don't give up the magnesium, ever.

>

> 3. Keep the Vit C and Zinc

>

> 4. Raw honey for antibacterial properties (incentive after taking

supplements?)

>

> 5. Kombucha tea, sauerkraut, coconut kefir, other cultured vegetables for

probiotics.

>

> 6. NO MSG or any forms of it. This is really important, avoid natural flavors,

yeast extract, " spices " , etc. and make sure everything he eats is something

grown from the ground. No hydrogenated oils, no canola .... just olive,

safflower, sunflower, grapeseed, or coconut oil.

>

> 7. The krill oil is probably fine, but you might want to add flaxseed oil as

well for extra Omega 3.

>

> There is a chance that he may be reacting to one of the multivitamin

supplements or the parasite supplement. Pay attention to the yellow colored ones

(COQ10, Vit B complex or multi), some of our children can't tolerate those. I

would not give the GSE either, but opt for something more mild because of his

temperament - candex, candidaise? Do you have activated charcoal on hand? I

would have that in case he has a reaction to food or supplements. As you get

further along in recovery, the bad reactions are more apparent - the constantly

mad, screaming child turns to the occasionally mad, screaming child and then you

have a tool.

>

> Did NP have you do an ALCAT food sensitivity test? We really liked that

test. Your child may be sensitive to coconut because it was used in one of the

more recent vaccinations, this is something that has been uncovered among some

moms whose children are a bit younger than mine.

>

> Liz

>

> >

> > > I would recommend you post what supplements etc.... you are giving your

son. Hard to way what would improve without knowing exactly what you are giving

him. Could be a major factor!

> > >

> > > Probiotics?

> > > Digestive enzymes?

> > > List of supplements?

> > > Yeast protocol?

> > >

> > > Only three rounds and worse, yeast protocol?

> > >

> > > Tammy

> > >

> > > [ ] Still keeping up the fight

> > >

> > > I am hoping I am not alone in feeling extremely discouraged by my childs

progress. He is almost three years old and autistic. I have tried a ton of

things for

> > > my son without any real gains in his condition. I continue to give him all