RE: advice

[Guest guest]

We saw Dr. Pakula as well. A nice women but not the most beneficial doctor

for us. We did biomed and we did the basic DAN protocal for our son who is now

7 and does not meet criteria for ASD (mild to moderate range autism at intial diagnosi).

She does not believe in biomed at least four yrs ago she didn't and told me " maybe

the diet would be helpful. " She told me I would be wasting my money and time.I am so

glad that I did not listen to her......................

My son did amazing with biomed interventions but we

did do it through a DAN doc. He is still on supplements based on labs and we are

gluten free but just added in dairy with enzymes. He is in a typical private school, plays

on a soccer team, and making friends nicely this year. I recommend biomed interventions

to all...it may not work for all to the point of recovery however I feel most kids get better.

My son was definitely vaccine injured and he had high lead and gut issues were significant.

I did not see the big wow from the diet but we stayed with it and over time his gut healed and we were able to

chelate and we followed that up with hbot...

Annemarie

We have been seeing Dr. Pakula at the Marcus Institue since our daughter was 18 months, she is now 4. She has been diagnosed as PDD and at last visit we were told we would probably never made it to a developmental ped had our daughter walked on time. She said she is not

worried about her and that she probably would have slipped through the cracks. I feel like we are not doing enough right now. We have her in weekly speech. I am about to try the gluten free diet. We have not had

any of the testing done that I see others talk about in their posts on this site and other sites. Should we see someone else, do you think testing is beneficial? We are experiencing behavioral issues, she is still not completely potty trained and everything we ask her to do, she

tells us no. Any advice? What has helped other kids? -- Annemarie Messerschmidt

[Guest guest]

I am not informed about a couple things you mentioned. One being vaccine injured, we have not had any testing for lead, etc. I do not even know where to start with the diet. I am going to purchase gluten free for dummies. I am also not familiar when you mention DAN? Which physician would you recommend? I want to me more aggressive than we currently are. I am frustrated, since Pakula will not call it autism mild/ moderate, high functiong etc. yet. We have been going every six months since 18 mos. and at each check up I don't know any more than when we walk in. I thought the Marcus Institue was cutting edge, but now I feel like we have wasted several years. I have hit a wall of frustration and I need to feel like we are doing something!

Thank you for the information

Anymore information anyone feels is beneficial would be welcomed. We have not been given any other than to put her in speech therapy. Anything I do know is from my own research, not from the physician.

Andie

Subject: Re: adviceTo: autism-georgia Date: Monday, September 29, 2008, 8:12 PM

We saw Dr. Pakula as well. A nice women but not the most beneficial doctor

for us. We did biomed and we did the basic DAN protocal for our son who is now

7 and does not meet criteria for ASD (mild to moderate range autism at intial diagnosi).

She does not believe in biomed at least four yrs ago she didn't and told me "maybe

the diet would be helpful." She told me I would be wasting my money and time.I am so

glad that I did not listen to her......... ......... ....

My son did amazing with biomed interventions but we

did do it through a DAN doc. He is still on supplements based on labs and we are

gluten free but just added in dairy with enzymes. He is in a typical private school, plays

on a soccer team, and making friends nicely this year. I recommend biomed interventions

to all...it may not work for all to the point of recovery however I feel most kids get better.

My son was definitely vaccine injured and he had high lead and gut issues were significant.

I did not see the big wow from the diet but we stayed with it and over time his gut healed and we were able to

chelate and we followed that up with hbot...

Annemarie

On Mon, Sep 29, 2008 at 7:31 PM, Andie Harman <andieh1124yahoo (DOT) com> wrote:

We have been seeing Dr. Pakula at the Marcus Institue since our daughter was 18 months, she is now 4. She has been diagnosed as PDD and at last visit we were told we would probably never made it to a developmental ped had our daughter walked on time. She said she is not worried about her and that she probably would have slipped through the cracks. I feel like we are not doing enough right now. We have her in weekly speech. I am about to try the gluten free diet. We have not had any of the testing done that I see others talk about in their posts on this site and other sites. Should we see someone else, do you think testing is beneficial? We are experiencing behavioral issues, she is still not completely potty trained and everything we ask her to do, she tells us no. Any advice? What has helped other kids? -- Annemarie Messerschmidt

[Guest guest]

There is a book that is great for the GFCF diet called –

Special Kids Special Diets by . I would recommend you buy that book on

Ebay or Amazon instead of the one for dummies! Then go to a health food store

close to your home (Google it putting in your zip) & try to buy the

ingredients. If you do the diet remember you cannot have even a small bite of a

regular cookie as that will defeat the purpose. You can also google for free

GFCF recipes online. It is not cheap & a lot of work but if you have

results in the long term that would be so worth it. We tried the diet for our kids

for 6 months & did not see any results & I was glad to have that as an

excuse to stop doing it.

I would also recommend you start aquatic therapy  - call

Excellence in Therapy (Pam son who operates out of the Dynamo Swim. pool),

PT – Dr.Steve Doran , find a good tutor (like a university student)or

a ABA place (Applied Behavior Analysis – which is just one on one

repetitive therapy)- if you live in Alpharetta call Summit Learning Center

& ask for Shauna & you will see results RIGHT AWAY!!! Call

your insurance company and ask them how many speech sessions they will pay per

year and same for OT (Occupational Therapy) & PT (Physical therapy) and

find providers ASAP. We did all of those and Music therapy through Crescendo (owner

-Amy Norris)Music and went in an overdraft balance very quickly!! However it is

all worth it in the end.

Our twins were diagnosed at 2 years 2 months. My daughter is now

in a regular 2nd Grade class and only has speech through the school for

½ an hour per week. She has NO diagnosis. My son was given a diagnosis of

Autism at age 5 (he was so bad – they usually will not label the kids as

Autistic until they are about 7-8 years old b’cos they don’t want

to get sued in case they are wrong – by that time a child’s symptoms

are pretty obvious). He is in Grade 1 and is in a “mild Autism”

class for ½ a day &   ½ a day with regular kids. They have both come a long

way & I KNOW it’s b’cos of the intense therapy we gave them,

lot of hard work and prayer.

Don’t get hung up on the actual label. It does not really

mean a thing except to get money for funding & even that the State has

nothing left for us anyway so what’s the point! The main thing is to get

services ASAP for her without wasting time. You can go to www.asaga.com and see the service providers

available ANYWHERE in GA.  Just don’t waste time b’cos you will

regret THAT more than anything.

E-mil me if you want any more of my two cents worth.

Nicky

From: autism-georgia

[mailto:autism-georgia ] On Behalf Of Andie H

Sent: Monday, September 29, 2008 9:03 PM

To: autism-georgia

Subject: Re: advice

I am not informed about a couple things you mentioned. One

being vaccine injured, we have not had any testing for lead, etc. I do not

even know where to start with the diet. I am going to purchase gluten free

for dummies. I am also not familiar when you mention DAN? Which physician

would you recommend? I want to me more aggressive than we currently are. I am

frustrated, since Pakula will not call it autism mild/ moderate, high

functiong etc. yet. We have been going every six months since 18 mos. and at

each check up I don't know any more than when we walk in. I thought the

Marcus Institue was cutting edge, but now I feel like we have wasted several

years. I have hit a wall of frustration and I need to feel like we are doing

something!

Thank you for the information

Anymore information anyone feels is beneficial would be

welcomed. We have not been given any other than to put her in speech therapy.

Anything I do know is from my own research, not from the physician.

Andie

From: Annemarie Messerschmidt

Subject: Re: advice

To: autism-georgia

Date: Monday, September 29, 2008, 8:12 PM

We saw Dr. Pakula as well. A nice women but not the most

beneficial doctor

for us. We did biomed and we did the basic DAN protocal

for our son who is now

7 and does not meet criteria for ASD (mild to moderate

range autism at intial diagnosi).

She does not believe in biomed at least four yrs ago she

didn't and told me " maybe

the diet would be helpful. " She told me I would be

wasting my money and time.I am so

glad that I did not listen to her......... ......... ....

My son did amazing with biomed interventions but we

did do it through a DAN doc. He is still on supplements

based on labs and we are

gluten free but just added in dairy with enzymes. He is in

a typical private school, plays

on a soccer team, and making friends nicely this year. I

recommend biomed interventions

to all...it may not work for all to the point of recovery

however I feel most kids get better.

My son was definitely vaccine injured and he had high lead

and gut issues were significant.

I did not see the big wow from the diet but we stayed with

it and over time his gut healed and we were able to

chelate and we followed that up with hbot...

Annemarie

On Mon, Sep 29, 2008 at 7:31 PM, Andie Harman <andieh1124yahoo (DOT) com>

wrote:

We have been

seeing Dr. Pakula at the Marcus Institue since our

daughter was 18 months, she is now 4. She has been diagnosed as PDD and

at last visit we were told we would probably never made it to a

developmental ped had our daughter walked on time. She said she is not

worried about her and that she probably would have slipped through the

cracks. I feel like we are not doing enough right now. We have her in

weekly speech. I am about to try the gluten free diet. We have not had

any of the testing done that I see others talk about in their posts on

this site and other sites. Should we see someone else, do you think

testing is beneficial? We are experiencing behavioral issues, she is

still not completely potty trained and everything we ask her to do, she

tells us no. Any advice? What has helped other kids?

--

Annemarie Messerschmidt

[Guest guest]

Andie,If your daughter is having speech issues, I would suggest you start by removing dairy first (if you haven't already tried that) and hold off a few weeks on removing the gluten. You will probably see more dramatic and rapid improvement with removing dairy as opposed to removing gluten first. For some reason that I do not know, it takes much longer to see the effects of removing gluten (months longer) than it does removing dairy. We took our daughter off dairy and within 3 days, her language took off. She nearly tripled her vocabulary in the first two weeks. I know the diet doesn't work for all but, if you try it, you have to remain diligent and give it at least six months. You have to read ingredient labels and, it is time consuming but, before long, it becomes second nature. We take our daughter to a DAN!

doctor in Macon, Dr. Duke. It is a two hour drive but, well worth it. It doesn't take too long to get an appointment with her and, she's very affordable, too. One of the things I like best is that she takes her cases to Dr. Buckley, a nationally known DAN! doctor who is partners with Dr. Jerry Kartzinel ( McCarthy's son's DAN! doctor) so, you get the knowledge of several doctors in one. Also, Dr. Duke is a mom of a son on the spectrum so, she knows what a lot of your own struggles are like. With one blood draw, she tests for lead and other heavy metals but, she also tests numerous other aspects like calcium levels and other minerals, blood counts and she pulls titers just to find out how immune your child is to illnesses. She can also determine vaccine injury. Dr. Duke found my daughter had MRSA and a form of strep that no one knew she had. She also found low serotonin which affects

mood and a tremendous yeast overgrowth in my daughter's digestive system. We've been treating that with Nystatin (typical pharmaceutical for yeast overgrowth) since May and, I can tell you, if our daughter misses a couple of days of Nystatin, she quickly regresses. Dr. Duke works the whole body to get it healthy through vitamins, too. The first visit and first labs are a shocker but, follow up appointments cost less than what I pay for a visit my own family physician for a common cold. And, we were fortunate enough to have insurance reimburse us a good portion of it. Beckett Medicaid doesn't reimburse us but, our primary insurance did. The DAN! protocol works on healing the entire body. The doctors use typical medications but, they also use vitamins and naturally occurring supplements. There is no "witchdoctor voodoo" in it. Again, even like typical western medicine, it doesn't work for 100% of

the kids but, for us and many people I know, it is working or has worked. A few great places to learn more about the DAN! (Defeat Autism Now) protocol is Autism.com, generationrescue.org and talkaboutcuringautism.org. I would suggest Dr. Bock's book, Healing the New Childhood Epidemics. And, there is a great Yahoo! group, taca-usa, that is full of moms (and a few dads) that can help guide you if you decide DAN! is appropriate for your daughter. I wish you the best as you make your decision about what steps to take next. If I can be of help, please e-mail.- Rhonda

We have been seeing Dr. Pakula at the Marcus Institue since our daughter was 18 months, she is now 4. She has been diagnosed as PDD and at last visit we were told we would probably never made it to a developmental ped had our daughter walked on time. She said she is not worried about her and that she probably would have slipped through the cracks. I feel like we are not doing enough right now. We have her in weekly speech. I am about to try the gluten free diet. We have not had any of the testing done that I see others talk about in their posts on this site and other sites. Should we see someone else, do you think testing is beneficial? We are experiencing behavioral issues, she is still not completely potty trained and everything we ask her to do, she tells us no. Any advice? What has helped other kids? -- Annemarie Messerschmidt

[Guest guest]

Rhonda,

I live in Warner Robins near Macon. I am a LPN but I now manage physicians office. The strange thing is that Dr. that is in with Dr. Duke subbed for our physician for a week last year. God works in mysterious ways. I called a number that I found on the web under awakenings medical center, but had to leave a message, is that the correct number?

Thanks

Andie

We have been seeing Dr. Pakula at the Marcus Institue since our daughter was 18 months, she is now 4. She has been diagnosed as PDD and at last visit we were told we would probably never made it to a developmental ped had our daughter walked on time. She said she is not worried about her and that she probably would have slipped through the cracks. I feel like we are not doing enough right now. We have her in weekly speech. I am about to try the gluten free diet. We have not had any of the testing done that I see others talk about in their posts on this site and other sites. Should we see someone else, do you think testing is beneficial? We are experiencing behavioral issues, she is still not completely potty trained and everything we ask her to do, she tells us no. Any advice? What has helped other kids? -- Annemarie Messerschmidt

[Guest guest]

tacanow.org has some great info that you will find helpful. we only

went to pakula 2x. she coded the visits as dx code 299 (autism) to

our insurance but would not write on any paper for bcw/school the

autism dx. we too do biomed and have since almost 2yo. my son is

now 7 and has made lots of strides.

imho, most dev ped wont give advice on alternative stuff. you need a

biomed doc for that (homepathic, " dan " defeat autism now doc, or

naturopath). its very time consuming to get started on the biomed

path. but its also time consuming to have a child who is low

functioning and not getting much out of standard therapies in terms

of care needed by his/her parents.

what area are you in? theres a group of us in the north fulton area

that meet monthly to discuss biomed stuff...

>

>

>

>

>

>

> We have been seeing Dr. Pakula at the Marcus Institue since our

> daughter was 18 months, she is now 4. She has been diagnosed as PDD

and

> at last visit we were told we would probably never made it to a

> developmental ped had our daughter walked on time. She said she is

not

> worried about her and that she probably would have slipped through

the

> cracks. I feel like we are not doing enough right now. We have her

in

> weekly speech. I am about to try the gluten free diet. We have not

had

> any of the testing done that I see others talk about in their posts

on

> this site and other sites. Should we see someone else, do you think

> testing is beneficial? We are experiencing behavioral issues, she

is

> still not completely potty trained and everything we ask her to do,

she

> tells us no. Any advice? What has helped other kids?

>

>

>

>

> --

> Annemarie Messerschmidt

>

[Guest guest]

Hi,

We used to have Dr. Pakula at the Marcus Institute as my son Doctor about 6 years a go.He is autistic.I change doctor when I notice that Dr. Pakula did not have much Knowledge to help my son with his problems.I was seen a DAN doctor at the same time that I was seen her and she was against all the treatments and the DAN advise to help my son. After I see result putting my autistic son on the diet Gluten,Casein,soy free that Dr.Pakula told me it was a waist of my time and money too. The DAN doctor told me not to think just do it. My son had all the signs of someone that was affected by food allergies like Gluten,casein,soy.Well I'm also glad I did not listen to her and change Doctors my son is less autistic on this diet much,much better.

Take care!!

Simon,

"If you want others to be happy, practice compassion. If you want to be happy, practice compassion." ~Dalai Lama

Subject: adviceTo: autism-georgia Date: Monday, September 29, 2008, 7:31 PM

We have been seeing Dr. Pakula at the Marcus Institue since our daughter was 18 months, she is now 4. She has been diagnosed as PDD and at last visit we were told we would probably never made it to a developmental ped had our daughter walked on time. She said she is not worried about her and that she probably would have slipped through the cracks. I feel like we are not doing enough right now. We have her in weekly speech. I am about to try the gluten free diet. We have not had any of the testing done that I see others talk about in their posts on this site and other sites. Should we see someone else, do you think testing is beneficial? We are experiencing behavioral issues, she is still not completely potty trained and everything we ask her to do, she tells us no. Any advice? What has helped other kids?

[Guest guest]

I recommend Dr. Nathason-Lippit. She is a developmental pediatrician who is also a DAN dr. Our insurance has reimbursed some of our first evaluation and almost all of our lab work. Getting the lab work done was a real eye opener to what is going on with our daughter. It is a great feeling to feel like we are on the right road!

[Guest guest]

Please go the next TACA.org meeting, you will definately benefit from the groups knowledge with the biomedical side. Especially if you are just starting. Its overwhelming and the other parents will help.

Stacey

Re: advice

We saw Dr. Pakula as well. A nice women but not the most beneficial doctor

for us. We did biomed and we did the basic DAN protocal for our son who is now

7 and does not meet criteria for ASD (mild to moderate range autism at intial diagnosi).

She does not believe in biomed at least four yrs ago she didn't and told me "maybe

the diet would be helpful." She told me I would be wasting my money and time.I am so

glad that I did not listen to her......... ......... ....

My son did amazing with biomed interventions but we

did do it through a DAN doc. He is still on supplements based on labs and we are

gluten free but just added in dairy with enzymes. He is in a typical private school, plays

on a soccer team, and making friends nicely this year. I recommend biomed interventions

to all...it may not work for all to the point of recovery however I feel most kids get better.

My son was definitely vaccine injured and he had high lead and gut issues were significant.

I did not see the big wow from the diet but we stayed with it and over time his gut healed and we were able to

chelate and we followed that up with hbot...

Annemarie

On Mon, Sep 29, 2008 at 7:31 PM, Andie Harman <andieh1124yahoo (DOT) com> wrote:

We have been seeing Dr. Pakula at the Marcus Institue since our daughter was 18 months, she is now 4. She has been diagnosed as PDD and at last visit we were told we would probably never made it to a developmental ped had our daughter walked on time. She said she is not worried about her and that she probably would have slipped through the cracks. I feel like we are not doing enough right now. We have her in weekly speech. I am about to try the gluten free diet. We have not had any of the testing done that I see others talk about in their posts on this site and other sites. Should we see someone else, do you think testing is beneficial? We are experiencing behavioral issues, she is still not completely potty trained and everything we ask her to do, she tells us no. Any advice? What has helped other kids? -- Annemarie Messerschmidt