Re: New to the group....at a crossroads with son

[Guest guest]

Visual stims in my house are viral. I'd say giving it a try would be worth the effort. Good luck! Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~ Hi...My name is . My almost 7 year old son, , has been on a long journey since his diagnosis 5 years ago. We have tried so many things in the hopes of it leading to a better level of functioning. Many of these things have not been helpful.We currently do SCD with no nuts and concentrate on keeping oxalates to a minimum. This does seem to help. We chelated, gave methylation support and tried enhansa. All were huge busts..as we have discovered he is extremely sulfur and methyl sensitive. I truly believe this is why our road has been so rocky. If he could tolerate those we would be much farther along in our recovery journey. We did Vit A with no real improvements...tried Secretin with no real benefit.We followed Yasko protocol for close to 2 years but it became so much to handle with the number of supplements and seeing few gains from .My son has made slow progress after removing methyl and sulfur and high oxalates...like enhansa and other supps and foods. My son has always been a big stimmer. He is verbal but not real converstaional. He struggles with school work and keeping on task. He is such a loving child and I want to explore what other things I could do to help him. I am cautious at this stage since he has been a non-responder to many things in the past as well as it sending him in a downward spiral.We did face a huge regression last winter when we suspected PANDAS. The test was negative, however, he had high markers of strep in his stool test. That lead me to SCD.My next thought is to look into anti-virals for . He regressed serverly after the MMR...but like I said...nothing came from Vit. A. I am considering Valtrex or Acyclovir. He is notorious for major eye stims...a lot of side gazing while he is verbal stimming.Any insight is greatly appreciated from the group.I have not given up...just slightly discouraged after the years I have spent putting everything I have into helping him.Thanks for any help.Mom to

[Guest guest]

From what I have read on virals via Stan Kurtz and Ethan, nothing showed up on

his viral testing and they helped him. I would say keep at it. My son is almost

3 and big visual stimmer with some verbal. The A doesn't help him much because

he has such a hard time with the A in his liver due to poor fat absorption

(because of his mercury levels, actually the markers on the urine porphrins are

REALLY HIGH and thus, mercury and lead is high somewhere in his body and that

has caused his yeast which causes the oxalate problems...you know the drill). We

are going to do viral even if it doesn't show in the tests. Also, we changed

fish oils about million times for the A and this last one seems to limit the eye

things. I went with the cheapest and most simple program of Kartner Health Omega

3,6,9 and the multi-vitamin/mineral powder. We had to cut out milk competely

even when doing SCD.

Obviously you have done everything, but one thing I have found is I had to give

mb12 a year strict GFCFSF 6 mos to a year and other stuff to really see a

difference. In fact, the more the regression at the start, the better the

outcome. Again, I am new but try the virals and read Stan's stuff his paper is

on the TACA website. Also, I have seen good stuff iwth chelating on the

mercury-autism yahoo group and some have done it for years with nothing for a

few then all of a sudden, bam! Good outcome. Good luck and keep up the fight.

>

> Hi...My name is . My almost 7 year old son, , has been on a long

journey since his diagnosis 5 years ago. We have tried so many things in the

hopes of it leading to a better level of functioning. Many of these things have

not been helpful.

>

> We currently do SCD with no nuts and concentrate on keeping oxalates to a

minimum. This does seem to help. We chelated, gave methylation support and

tried enhansa. All were huge busts..as we have discovered he is extremely

sulfur and methyl sensitive. I truly believe this is why our road has been so

rocky. If he could tolerate those we would be much farther along in our

recovery journey. We did Vit A with no real improvements...tried Secretin with

no real benefit.

>

> We followed Yasko protocol for close to 2 years but it became so much to

handle with the number of supplements and seeing few gains from .

>

> My son has made slow progress after removing methyl and sulfur and high

oxalates...like enhansa and other supps and foods.

>

> My son has always been a big stimmer. He is verbal but not real

converstaional. He struggles with school work and keeping on task. He is such

a loving child and I want to explore what other things I could do to help him.

I am cautious at this stage since he has been a non-responder to many things in

the past as well as it sending him in a downward spiral.

>

> We did face a huge regression last winter when we suspected PANDAS. The test

was negative, however, he had high markers of strep in his stool test. That

lead me to SCD.

>

> My next thought is to look into anti-virals for . He regressed serverly

after the MMR...but like I said...nothing came from Vit. A. I am considering

Valtrex or Acyclovir. He is notorious for major eye stims...a lot of side

gazing while he is verbal stimming.

> Any insight is greatly appreciated from the group.

>

> I have not given up...just slightly discouraged after the years I have spent

putting everything I have into helping him.

>

> Thanks for any help.

>

> Mom to

>

[Guest guest]

,

I'd probably be considered an old timer by now. We've been doing this for 5

years now (son's 11) and have been successfully working our layers. We've worked

on metals (chelated using DMPS injections, DMSA 3/11 cycles, ALA, Chlorella,

Cilantro); anti-virals (just like the prior post Vit A stressed his liver, the

rest has been many naturals, but our break-through was LDM-100);

anti-bacterials; anti-parasitics (mainly naturals & herbs).

Having been on the boards for many years now I personally know several that

found theire break throughs with the below things I would like to suggest:

1) I want to encourage you to go deeper on the anti-viral pathway.

2) I also want to recommend you look deeper into bacteria (including staph &

strep), parasites, Lyme & co-infections. Many of them that hit walls like you

are describing found their break-throughs at these levels. My top recommendation

to look further into these are the LIA Foundation & the

BorreliaMultipleInfectionsandAutism group. That group has several that fit right

into your post. Their posts have been almost identicle (did DAN & Yasko) & now

broken through going even deeper..some of them from non-verbal to verbal.

My son has personally been through all of the above layers. The viral layer (2

years on & off LDM-100) was big for us (my kids biggest stressors were metals,

viral, staph/strep & Lyme..I've had a tough job, but great docs!)

Zinc was big for us on the eye ticking. Do his nails have white spots/little

lines (look @ the zinc & possibly onto the KPU...you'll read about that on the

LIA group).

3) Follow Heidi's posts (she's also on the LIA group).

Just to encourage you, Leave no rock unturned...some times you just have to dig

a little deeper for the tougher kids.

All my best!

Rita

> >

> > Hi...My name is . My almost 7 year old son, , has been on a

long journey since his diagnosis 5 years ago. We have tried so many things in

the hopes of it leading to a better level of functioning. Many of these things

have not been helpful.

> >

> > We currently do SCD with no nuts and concentrate on keeping oxalates to a

minimum. This does seem to help. We chelated, gave methylation support and

tried enhansa. All were huge busts..as we have discovered he is extremely

sulfur and methyl sensitive. I truly believe this is why our road has been so

rocky. If he could tolerate those we would be much farther along in our

recovery journey. We did Vit A with no real improvements...tried Secretin with

no real benefit.

> >

> > We followed Yasko protocol for close to 2 years but it became so much to

handle with the number of supplements and seeing few gains from .

> >

> > My son has made slow progress after removing methyl and sulfur and high

oxalates...like enhansa and other supps and foods.

> >

> > My son has always been a big stimmer. He is verbal but not real

converstaional. He struggles with school work and keeping on task. He is such

a loving child and I want to explore what other things I could do to help him.

I am cautious at this stage since he has been a non-responder to many things in

the past as well as it sending him in a downward spiral.

> >

> > We did face a huge regression last winter when we suspected PANDAS. The

test was negative, however, he had high markers of strep in his stool test.

That lead me to SCD.

> >

> > My next thought is to look into anti-virals for . He regressed serverly

after the MMR...but like I said...nothing came from Vit. A. I am considering

Valtrex or Acyclovir. He is notorious for major eye stims...a lot of side

gazing while he is verbal stimming.

> > Any insight is greatly appreciated from the group.

> >

> > I have not given up...just slightly discouraged after the years I have spent

putting everything I have into helping him.

> >

> > Thanks for any help.

> >

> > Mom to

> >

>

[Guest guest]

Thanks for all of the information, .

While following Yasko my son was dumping lead off the charts...it is still a problem I am sure. Although he was dumping tons of lead...I still saw no real improvements. We are dairy free and have been for 5 years. I plan on adding 1/4 tsp. of goat yogurt this week. I just finished making it.

Thanks for taking the time to respond and share your thoughts. I truly appreciate it.

Jen

Re: New to the group....at a crossroads with son

From what I have read on virals via Stan Kurtz and Ethan, nothing showed up on his viral testing and they helped him. I would say keep at it. My son is almost 3 and big visual stimmer with some verbal. The A doesn't help him much because he has such a hard time with the A in his liver due to poor fat absorption (because of his mercury levels, actually the markers on the urine porphrins are REALLY HIGH and thus, mercury and lead is high somewhere in his body and that has caused his yeast which causes the oxalate problems...you know the drill). We are going to do viral even if it doesn't show in the tests. Also, we changed fish oils about million times for the A and this last one seems to limit the eye things. I went with the cheapest and most simple program of Kartner Health Omega 3,6,9 and the multi-vitamin/mineral powder. We had to cut out milk competely even when doing SCD. Obviously you have done everything, but one thing I have found is I had to give mb12 a year strict GFCFSF 6 mos to a year and other stuff to really see a difference. In fact, the more the regression at the start, the better the outcome. Again, I am new but try the virals and read Stan's stuff his paper is on the TACA website. Also, I have seen good stuff iwth chelating on the mercury-autism yahoo group and some have done it for years with nothing for a few then all of a sudden, bam! Good outcome. Good luck and keep up the fight. >> Hi...My name is . My almost 7 year old son, , has been on a long journey since his diagnosis 5 years ago. We have tried so many things in the hopes of it leading to a better level of functioning. Many of these things have not been helpful.> > We currently do SCD with no nuts and concentrate on keeping oxalates to a minimum. This does seem to help. We chelated, gave methylation support and tried enhansa. All were huge busts..as we have discovered he is extremely sulfur and methyl sensitive. I truly believe this is why our road has been so rocky. If he could tolerate those we would be much farther along in our recovery journey. We did Vit A with no real improvements...tried Secretin with no real benefit.> > We followed Yasko protocol for close to 2 years but it became so much to handle with the number of supplements and seeing few gains from .> > My son has made slow progress after removing methyl and sulfur and high oxalates...like enhansa and other supps and foods. > > My son has always been a big stimmer. He is verbal but not real converstaional. He struggles with school work and keeping on task. He is such a loving child and I want to explore what other things I could do to help him. I am cautious at this stage since he has been a non-responder to many things in the past as well as it sending him in a downward spiral.> > We did face a huge regression last winter when we suspected PANDAS. The test was negative, however, he had high markers of strep in his stool test. That lead me to SCD.> > My next thought is to look into anti-virals for . He regressed serverly after the MMR...but like I said...nothing came from Vit. A. I am considering Valtrex or Acyclovir. He is notorious for major eye stims...a lot of side gazing while he is verbal stimming.> Any insight is greatly appreciated from the group.> > I have not given up...just slightly discouraged after the years I have spent putting everything I have into helping him.> > Thanks for any help.> > Mom to >

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[Guest guest]

,There was an article in the last Autism Files magazine about neuro-developmental eye therapy that our kids a lot. Your son's looking out of the sides of his eyes was one of the symptoms they mentioned that can be corrected. In the child's case they mentioned in the article, the final result after therapy, helped the child in other areas that were unexpected to the mother, like increased eye contact and better ability to read and do schoolwork.The link to find the kind of eye therapy mentioned was at www.nora.ccSallyFrom: Cheryl Lowrance To: mb12 valtrex Sent: Wed, October 28, 2009 1:39:25 PMSubject: Re: New to the group....at a crossroads with son

Visual stims in my house are viral. I'd say giving it a try would be worth the effort. Good luck! Cheryl~http://www.gryffins -tail.blogspot. com~@midian42~ Hi...My name is . My almost 7 year old son, , has been on a long journey since his diagnosis 5 years ago. We have tried so many things in the hopes of it leading to a better level of functioning. Many of these things have not been helpful.We currently do SCD with no nuts and concentrate on keeping oxalates to a minimum. This does seem to help. We chelated, gave methylation support and tried enhansa. All were huge busts..as we have

discovered he is extremely sulfur and methyl sensitive. I truly believe this is why our road has been so rocky. If he could tolerate those we would be muc!

h farthe

r along in our recovery journey. We did Vit A with no real improvements. ..tried Secretin with no real benefit.We followed Yasko protocol for close to 2 years but it became so much to handle with the number of supplements and seeing few gains from .My son has made slow progress after removing methyl and sulfur and high oxalates...like enhansa and other supps and foods. My son has always been a big stimmer. He is verbal but not real converstaional. He struggles with school work and keeping on task. He is such a loving child and I want to explore what other things I could do to help him. I am cautious at this stage since he has been a non-responder to many things in the past as well as it sending him in a downward spiral.We did face a huge regression last winter when we suspected PANDAS. The test was negative, however, he had high markers of strep in his stool test. That

lead me to SCD.My next thought is to look into anti-virals for . He regressed serverly after the MMR...but like I said...nothing came from Vit. A. I am considering Valtrex or Acyclovir. He is notorious for major eye stims...a lot of side gazing while he is verbal stimming.Any insight is greatly appreciated from the group.I have not given up...just slightly discouraged after the years I have spent putting everything I have into helping him.Thanks for any help.Mom to

[Guest guest]

What is it,and would it work for Ocular Motor Apraxia Hi...My name is . My almost 7 year old son, , has been on a long journey since his diagnosis 5 years ago. We have tried so many things in the hopes of it leading to a better level of functioning. Many of these things have not been helpful.We currently do SCD with no nuts and concentrate on keeping oxalates to a minimum. This does seem to help. We chelated, gave methylation support and tried enhansa. All were huge busts..as we have

discovered he is extremely sulfur and methyl sensitive. I truly believe this is why our road has been so rocky. If he could tolerate those we would be muc!

h farthe

r along in our recovery journey. We did Vit A with no real improvements. ..tried Secretin with no real benefit.We followed Yasko protocol for close to 2 years but it became so much to handle with the number of supplements and seeing few gains from .My son has made slow progress after removing methyl and sulfur and high oxalates...like enhansa and other supps and foods. My son has always been a big stimmer. He is verbal but not real converstaional. He struggles with school work and keeping on task. He is such a loving child and I want to explore what other things I could do to help him. I am cautious at this stage since he has been a non-responder to many things in the past as well as it sending him in a downward spiral.We did face a huge regression last winter when we suspected PANDAS. The test was negative, however, he had high markers of strep in his stool test. That

lead me to SCD.My next thought is to look into anti-virals for . He regressed serverly after the MMR...but like I said...nothing came from Vit. A. I am considering Valtrex or Acyclovir. He is notorious for major eye stims...a lot of side gazing while he is verbal stimming.Any insight is greatly appreciated from the group.I have not given up...just slightly discouraged after the years I have spent putting everything I have into helping him.Thanks for any help.Mom to