Re: New and confused as usual

[Guest guest]

Your provider can get some good information from 's site:

www.stopcallingitautism.com

I believe he's posted info on the tests. The diet is ok; it really depends on

how much he has in the way of food allergies. I have two who aren't too bad and

one who is very sensitive. Basically, no nuts, tropical fruits or berries.

Processed peanut butter is ok if your child isn't allergic--same with eggs.

Limited carbs and no whole grains. The theory behind the whole grains is that it

causes an inflammation response in the body. I noticed a huge improvement in my

son's eczema after eliminating whole grains; I was amazed. From the time they

were little, I had all three of my boys on whole wheat and then graduated them

to the high fiber, nut/seeds type bread. It was probably one of the worst things

I could've done. Bovine casein is off limits; goat's milk is fine. We buy goat's

milk cheese at Trader Joe's and my kids love it.

Regarding meds, we don't do weekly blood tests. It's about every other month or

so Dr. G has them draw for a CBC, liver panel and viral titers. Other blood

tests, too, if necessary. Only one of my kids has had the SPECT scan and he was

sedated.

I hope this helps. Good luck!

Robyn

________________________________

From: sablepawz <sablepawz@...>

Sent: Tue, March 23, 2010 6:07:03 PM

Subject: New and confused as usual

Hello, I am mother to a wonderful, imaginative, playful, creative and

affectionate little boy who is 6 years old and was diagnosed with classic autism

at nearly 3. I never went through the typical reactions parents do. Not because

I am or ever was in denial but because I just didn't feel it. I was more like,

omg why won't anyone help me help him? I've been in a mixed greenspan ABA

intensive program for over 2 years. Yes he has grown but because of that? I

really don't think so, perhaps as any child would grow from contact. I think

he's sick, I know he's hurting. I think I shut down the for the last year and

now am panicking because I did. Ok that might not make sense but anyway I am new

to finding out about this and have convinced my provider to help me. A few

things worry me right off the bat... and a few of these things may have been

answered on the other forum, thank you for any responses.

1- My provider will help me but I have to help her understand what needs to be

done. Tests, interpreting tests, then after that meds perhaps... With my Lyrica

fog this is hard.

2-This diet seems rough. We went gluten casein free for a few months about a

year ago. I'm willing to try it again but for a kid who eats almost nothing but

pb and j and apples this is going to be a lot of screaming and self injury. I

KNOW all these kids are food picky so I seek suggestions.

3- The SPECT scan, what options do I have about knocking him out for this? He is

just horrified to the point of a nervous breakdown when he sees anything of the

sort.

4- If I do put him on meds, depending on the test results I read someplace about

weekly blood tests, what is that about? What meds specifically is this being

done for?

5- Is anyone not doing all these meds and just a few with success?

Thank you for baring with me, I am just a mess I know lol

[Guest guest]

Hi -

I only have a couple of moments so I'll answer a couple of your questions within

the text below, marked w/***

________________________________

From: sablepawz sablepawz@...

 and a few of these things may have been answered on the other forum, thank you

for any responses.

1- My provider will help me but I have to help her understand what needs to be

done. Tests, interpreting tests, then after that meds perhaps... With my Lyrica

fog this is hard.

*** The lab workup is available on .net under 'for doctors' I think.  Make

sure your doctor uses diagnosis codes for " Immune dysfunction unspecified, and

cognitive dysfunction " , NOT autism, in order for insurance to pay.  The food

screen (if you choose to order it) is the only thing not covered by insurance

and is around $100.00.  It's a LOT of blood work.  I can point you to the more

important ones if you need to break it up.  You need to contact a good lab,

good with kids, in advance of your visit, tell them you have a lot of labs on a

little one, and ask for the person who will be best at combining what labs can

be done for what tubes before you ever get there.  An experienced knowledgeable

lab tech can get more tests in much less blood, but you need to get them early

and make sure you have someone who knows what they're doing.  (It's not THAT

bad, it's just worth the extra effort.)  Don't forget to make sure your kid is

well-hydrated

before drawing blood - makes it easier.

I and others can talk to you later about the meds, the doses and why, what the

hypothesis is behind this, what support there is, what the safety is, the need

for committment long term to meds to prevent resistance (usually the doc's

biggest concerns), etc.  Takes a little more time than I have tonight.

2-This diet seems rough. We went gluten casein free for a few months about a

year ago. I'm willing to try it again but for a kid who eats almost nothing but

pb and j and apples this is going to be a lot of screaming and self injury. I

KNOW all these kids are food picky so I seek suggestions.

*** Gosh I think the diet is so much easier than GFCF.  Pb & j and apples

aren't necessarily off limits - it's mostly just not enough protein.  I found

that after antifungals were introduced that diet changes got easier. 

Antifungals tend to have a very positive impact on sensory problems, which is

why I think diet issues improve (well, for some of us) on them.

3- The SPECT scan, what options do I have about knocking him out for this? He is

just horrified to the point of a nervous breakdown when he sees anything of the

sort.

**** There is no need for you to have a SPECT.  Dr G rarely orders them

anymore, and most often waits until a year or more of therapy.  Insurance covg

isn't great for them, either, so that $2000 plus can be used far better.  Skip

that one.   It's most useful in research now and won't likely impact

treatment. 

4- If I do put him on meds, depending on the test results I read someplace about

weekly blood tests, what is that about? What meds specifically is this being

done for?

*** Blood tests are monthly - a CBC (blood count) and chemistry (like liver

panel etc), to check to make sure meds aren't causing any problems.  Some

people can spread those a little longer apart ... Dr G is stricter and does them

monthly.  Antifungals carry a very small risk of liver problems.  The way Dr G

doses them starting low and increasing prevents most of the risk.  He has only

had to take 2 patients off antifungals in ?what? 20 years?  And he uses a

higher therapeutic dose - very important to reduce risk of tolerance.

5- Is anyone not doing all these meds and just a few with success?

*** Dr G said that a child doing just diet and a low dose SSRI, compared to kids

who had done a lot of DAN! protocol stuff, does much better in the long term

than kids who have been on all kinds of supplements and chelation, etc.  Shown

by SPECT scan.  But our kids ARE medically ill.  Have you heard about the

research on the retrovirus XMRV in CFIDS yet?  Very important, as CFIDS and

autism are almost identical - our kids may very well have a virus causing this

dysfunction (ask me to send you my post on children w/AIDS- interesting

comparisons), and this protocol was influenced by a couple of top AIDS

researchers long before a suspect virus was found.

Thank you for baring with me, I am just a mess I know lol

Ah there's a learning curve.  Hang in there!

HTH-

[Guest guest]

“The Diet†remains the hardest part for me. My son was fine with peanut

butter for awhile, but now he cannot have it. Unless Skippy changed their recipe

or peanuts. :-(

Kristy Nardini

TazziniTM Stainless Steel Bottles

www.tazzini.com

kristy@...

Phone: 858.243.1929

Fax: 858.724.1418

P Please consider the environment before printing this email.

From: [mailto: ] On Behalf Of

Sent: Tuesday, March 23, 2010 8:31 PM

Subject: Re: New and confused as usual

Hi -

I only have a couple of moments so I'll answer a couple of your questions within

the text below, marked w/***

________________________________

From: sablepawz sablepawz@... <mailto:sablepawz%40>

and a few of these things may have been answered on the other forum, thank you

for any responses.

1- My provider will help me but I have to help her understand what needs to be

done. Tests, interpreting tests, then after that meds perhaps... With my Lyrica

fog this is hard.

*** The lab workup is available on .net under 'for doctors' I think. Make

sure your doctor uses diagnosis codes for " Immune dysfunction unspecified, and

cognitive dysfunction " , NOT autism, in order for insurance to pay. The food

screen (if you choose to order it) is the only thing not covered by insurance

and is around $100.00. It's a LOT of blood work. I can point you to the more

important ones if you need to break it up. You need to contact a good lab, good

with kids, in advance of your visit, tell them you have a lot of labs on a

little one, and ask for the person who will be best at combining what labs can

be done for what tubes before you ever get there. An experienced knowledgeable

lab tech can get more tests in much less blood, but you need to get them early

and make sure you have someone who knows what they're doing. (It's not THAT

bad, it's just worth the extra effort.) Don't forget to make sure your kid is

well-hydrated

before drawing blood - makes it easier.

I and others can talk to you later about the meds, the doses and why, what the

hypothesis is behind this, what support there is, what the safety is, the need

for committment long term to meds to prevent resistance (usually the doc's

biggest concerns), etc. Takes a little more time than I have tonight.

2-This diet seems rough. We went gluten casein free for a few months about a

year ago. I'm willing to try it again but for a kid who eats almost nothing but

pb and j and apples this is going to be a lot of screaming and self injury. I

KNOW all these kids are food picky so I seek suggestions.

*** Gosh I think the diet is so much easier than GFCF. Pb & j and apples

aren't necessarily off limits - it's mostly just not enough protein. I found

that after antifungals were introduced that diet changes got easier.

Antifungals tend to have a very positive impact on sensory problems, which is

why I think diet issues improve (well, for some of us) on them.

3- The SPECT scan, what options do I have about knocking him out for this? He is

just horrified to the point of a nervous breakdown when he sees anything of the

sort.

**** There is no need for you to have a SPECT. Dr G rarely orders them anymore,

and most often waits until a year or more of therapy. Insurance covg isn't

great for them, either, so that $2000 plus can be used far better. Skip that

one. It's most useful in research now and won't likely impact treatment.

4- If I do put him on meds, depending on the test results I read someplace about

weekly blood tests, what is that about? What meds specifically is this being

done for?

*** Blood tests are monthly - a CBC (blood count) and chemistry (like liver

panel etc), to check to make sure meds aren't causing any problems. Some people

can spread those a little longer apart ... Dr G is stricter and does them

monthly. Antifungals carry a very small risk of liver problems. The way Dr G

doses them starting low and increasing prevents most of the risk. He has only

had to take 2 patients off antifungals in ?what? 20 years? And he uses a higher

therapeutic dose - very important to reduce risk of tolerance.

5- Is anyone not doing all these meds and just a few with success?

*** Dr G said that a child doing just diet and a low dose SSRI, compared to kids

who had done a lot of DAN! protocol stuff, does much better in the long term

than kids who have been on all kinds of supplements and chelation, etc. Shown

by SPECT scan. But our kids ARE medically ill. Have you heard about the

research on the retrovirus XMRV in CFIDS yet? Very important, as CFIDS and

autism are almost identical - our kids may very well have a virus causing this

dysfunction (ask me to send you my post on children w/AIDS- interesting

comparisons), and this protocol was influenced by a couple of top AIDS

researchers long before a suspect virus was found.

Thank you for baring with me, I am just a mess I know lol

Ah there's a learning curve. Hang in there!

HTH-

[Guest guest]

I've never understood why bovine casein and berries are off limits.

Kristy, thank you for pointing out that antifungals help with sensory issues

resulting in diet expansion. That makes so much sense to me and luckily we've

experienced that.

Mindy

Re: New and confused as usual

Hi -

I only have a couple of moments so I'll answer a couple of your questions within

the text below, marked w/***

________________________________

From: sablepawz sablepawz@...

and a few of these things may have been answered on the other forum, thank you

for any responses.

1- My provider will help me but I have to help her understand what needs to be

done. Tests, interpreting tests, then after that meds perhaps... With my Lyrica

fog this is hard.

*** The lab workup is available on .net under 'for doctors' I think. Make

sure your doctor uses diagnosis codes for " Immune dysfunction unspecified, and

cognitive dysfunction " , NOT autism, in order for insurance to pay. The food

screen (if you choose to order it) is the only thing not covered by insurance

and is around $100.00. It's a LOT of blood work. I can point you to the more

important ones if you need to break it up. You need to contact a good lab, good

with kids, in advance of your visit, tell them you have a lot of labs on a

little one, and ask for the person who will be best at combining what labs can

be done for what tubes before you ever get there. An experienced knowledgeable

lab tech can get more tests in much less blood, but you need to get them early

and make sure you have someone who knows what they're doing. (It's not THAT

bad, it's just worth the extra effort.) Don't forget to make sure your kid is

well-hydrated

before drawing blood - makes it easier.

I and others can talk to you later about the meds, the doses and why, what the

hypothesis is behind this, what support there is, what the safety is, the need

for committment long term to meds to prevent resistance (usually the doc's

biggest concerns), etc. Takes a little more time than I have tonight.

2-This diet seems rough. We went gluten casein free for a few months about a

year ago. I'm willing to try it again but for a kid who eats almost nothing but

pb and j and apples this is going to be a lot of screaming and self injury. I

KNOW all these kids are food picky so I seek suggestions.

*** Gosh I think the diet is so much easier than GFCF. Pb & j and apples

aren't necessarily off limits - it's mostly just not enough protein. I found

that after antifungals were introduced that diet changes got easier.

Antifungals tend to have a very positive impact on sensory problems, which is

why I think diet issues improve (well, for some of us) on them.

3- The SPECT scan, what options do I have about knocking him out for this? He is

just horrified to the point of a nervous breakdown when he sees anything of the

sort.

**** There is no need for you to have a SPECT. Dr G rarely orders them anymore,

and most often waits until a year or more of therapy. Insurance covg isn't

great for them, either, so that $2000 plus can be used far better. Skip that

one. It's most useful in research now and won't likely impact treatment.

4- If I do put him on meds, depending on the test results I read someplace about

weekly blood tests, what is that about? What meds specifically is this being

done for?

*** Blood tests are monthly - a CBC (blood count) and chemistry (like liver

panel etc), to check to make sure meds aren't causing any problems. Some people

can spread those a little longer apart ... Dr G is stricter and does them

monthly. Antifungals carry a very small risk of liver problems. The way Dr G

doses them starting low and increasing prevents most of the risk. He has only

had to take 2 patients off antifungals in ?what? 20 years? And he uses a higher

therapeutic dose - very important to reduce risk of tolerance.

5- Is anyone not doing all these meds and just a few with success?

*** Dr G said that a child doing just diet and a low dose SSRI, compared to kids

who had done a lot of DAN! protocol stuff, does much better in the long term

than kids who have been on all kinds of supplements and chelation, etc. Shown

by SPECT scan. But our kids ARE medically ill. Have you heard about the

research on the retrovirus XMRV in CFIDS yet? Very important, as CFIDS and

autism are almost identical - our kids may very well have a virus causing this

dysfunction (ask me to send you my post on children w/AIDS- interesting

comparisons), and this protocol was influenced by a couple of top AIDS

researchers long before a suspect virus was found.

Thank you for baring with me, I am just a mess I know lol

Ah there's a learning curve. Hang in there!

HTH-