Re: Changing Minds Protocol/Normal Reaction to Pain

June 1, 2009

My daughter age 4 has always had an intense reaction to pain! she is not on any protocol. She screamed like all my other babies when she got her immunizations and now shows us if she gets even a little scratch. I know that my neice (she is 15) does NOT react to pain much at all. I guess all our kids are different.

Lorene

Subject: [DownSyndromeInfoExchange] Changing Minds Protocol/"Normal" Reaction to PainTo: DownSyndromeInfoExchange Date: Monday, June 1, 2009, 3:32 PM

My son is 20 months old. We started him on Ginkgo Biloba when he was 13 months old and Prozac when he was 14 months old. We added the Body Bio PC and oil when he was 16 months old. One change I've noticed since starting the protocol is that he now has a "normal" reaction to pain. Allow me to explain what I mean.Here are some examples of our son NOT having a "normal" reaction to pain. When Tristen was born, he was in the NICU for 9 days. During that time my husband and I watched as he was poked and prodded with multiple needles, he had his IV changed 4 times - and he never even flinched, never cried, he acted as though nothing happened. At two weeks old, he had his circumcision done in my OB's office - he didn't cry. Throughout the months, he went for immunization shots and NEVER cried. Before starting the protocol (at 13 months), I took him to the hospital to have a battery of bloodwork drawn. He had 7 vials of blood drawn - his

vein stopped giving blood twice and the nurse had to move it all around in his arm trying to find the vein again (made me sick to watch because I have "rolling veins" and this happens to me everytime I have blood drawn - it REALLY hurts). He did not even flinch or attempt to move his arms or legs, never cried, didn't even get upset at being restrained by a second nurse. Both nurses were just amazed that he was so "good." I was just sick inside because I knew that this meant he just wasn't "feeling" things as he should. Throughout his first year I cannot remember a time when he fell over and cried from pain. Even his physical therapist commented many times about him "being tough" because he didn't cry when he bumped his head or fell.Fast forward to today. . . he totally reacts appropriately to pain! He had his blood drawn (just 4 tubes) in April - he screamed, hollered, kicked, turned purple - and it took two people to hold him down while the

nurse drew his blood. He had an immunization shot a couple of months ago and threw a fit! He now cries when he gets a bump. The difference we see is night and day. It is as though he had absolutely no sesitivity to pain before starting the protocol and now his pain sensitivity is normal.Has anyone else noticed this in their child?? Just curious. . . .Christy

June 1, 2009

Danny used to have problems with hyposensitivity, especially in

his mouth…he used to want to have Peppercorn Ranch dressing on everything

he ate..but he was hypersensitive to sounds…he would be hysterical during

a thunderstorm, fireworks, couldn’t go to the movies because he couldn’t

stand the sound..now he doesn’t like Peppercorn Ranch or any heavily

spiced foods..says they are ‘too hot’. Around the same time that that

happened, he also became able to tolerate thunderstorms, likes fireworks, and

when we went to a movie the other day, he wore his ear protecting headphones at

first, then took them off and handed them to me. (he is not on the CM protocol,

just NVD, gingko, Omega-3’s)He also was also able to be completely toilet

trained at 3 ½….way before he ever started on gingko..

I know that there are many kids w/Ds who don’t take any

kind of supplements who are very healthy…Danny was never really healthy

until we started him on nvd..I know that there are many parents whose child did

not seem to have any good response to nvd, and I believe those parents when

they say that it didn’t work for their child….but I also know what

parents mean when they say that they notice changes in their kids after

starting them on something new….if an infection clears up after putting a

child on an antibiotic, the antibiotic is usually given credit for curing the

infection…but if changes are noticed after starting a child on a

supplement/alternative therapy, many times people are quick to write it off to

coincidence or whatever. I truly do think that all of our kids have enough

differences that no one approach is going to work exactly the same for every

single kid..some kids seem to need something extra in order to reach certain

milestones, others don’t.

KathyR

__

June 1, 2009

you said it all kathyeach kid has only to be compared to themselvesbut we have always to be aware and well informed because some experience mauhelp more than one kidthere is tons of it in this list and that is why i like itso muchamanda was always healthier than my two other daughter without DSand with The cm protocol she became even healthieri am seriously thinking about having The whole family in pc and body bio oili Will start with myself-you do a blood exam TO see what is missing and can compasate with suplementsÂ i am sure nutrevene has a similar effect, but we never got to try itPatEnviado de meu iPhoneEm 01/06/2009, Ã s 17:10, "Kathy" escreveu:

Danny used to have problems with hyposensitivity, especially in

his mouthâ€¦he used to want to have Peppercorn Ranch dressing on everything

he ate..but he was hypersensitive to soundsâ€¦he would be hysterical during

a thunderstorm,you fireworks, couldnâ€™t go to the movies because he couldnâ€™t

stand the sound..now he doesnâ€™t like Peppercorn Ranch or any heavily

spiced foods..says they are â€˜too hotâ€™. Around the same time that that

happened, he also became able to tolerate thunderstorms, likes fireworks, and

when we went to a movie the other day, he wore his ear protecting headphones at

first, then took them off and handed them to me. (he is not on the CM protocol,

just NVD, gingko, Omega-3â€™s)He also was also able to be completely toilet

trained at 3 Â½â€¦.way before he ever started on gingko..

I know that there are many kids w/Ds who donâ€™t take any

kind of supplements who are very healthyâ€¦Danny was never really healthy

until we started him on nvd..I know that there are many parents whose child did

not seem to have any good response to nvd, and I believe those parents when

they say that it didnâ€™t work for their childâ€¦.but I also Â know what

parents mean when they say that they notice changes in their kids after

starting them on something newâ€¦.if an infection clears up after putting a

child on an antibiotic, the antibiotic is usually given credit for curing the

infectionâ€¦but if changes are noticed after starting a child on a

supplement/alternative therapy, many times people are quick to write it off to

coincidence or whatever. I truly do think that all of our kids have enough

differences that no one approach Â is going to work exactly the same for every

single kid..some kids seem to need something extra in order to reach certain

milestones, others donâ€™t.

KathyR

Â

__

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June 1, 2009

"but I also know what parents mean when they say that they notice changes in their kids after starting them on something new….if an infection clears up after putting a child on an antibiotic, the antibiotic is usually given credit for curing the infection…but if changes are noticed after starting a child on a supplement/alternative therapy, many times people are quick to write it off to coincidence or whatever. I truly do think that all of our kids have enough differences that no one approach is going to work exactly the same for every single kid..some kids seem to need something extra in order to reach certain milestones, others don't."

Kathy -

Thank you for your comments. I have noticed the same with people "writing off" the positive effects our son is experiencing since starting the protocol. My husband and I are very analytical people. As with any treatment, I don't think that any one thing will work for every0ne. With that said. . . the CMF protocol *IS* working for OUR son. This was just a recent realization looking back at my and the timing of the difference in his pain reaction was quite remarkable to us (looking back over my notes of his appointments). He went from still having NO pain reaction at the appointment where they drew 7 vials of blood-just weeks before starting Prozac- to having a normal pain reaction 1 month after adding Prozac (and continuing to have a normal pain reaction from that time to present).

Christy

I have not posted any updates here recently about the progress our son is making.

>> Danny used to have problems with hyposensitivity, especially in his mouth…he> used to want to have Peppercorn Ranch dressing on everything he ate..but he> was hypersensitive to sounds…he would be hysterical during a thunderstorm,> fireworks, couldn't go to the movies because he couldn't stand the> sound..now he doesn't like Peppercorn Ranch or any heavily spiced> foods..says they are `too hot'. Around the same time that that happened, he> also became able to tolerate thunderstorms, likes fireworks, and when we> went to a movie the other day, he wore his ear protecting headphones at> first, then took them off and handed them to me. (he is not on the CM> protocol, just NVD, gingko, Omega-3's)He also was also able to be completely> toilet trained at 3 ½….way before he ever started on gingko..> > I know that there are many kids w/Ds who don't take any kind of supplements> who are very healthy…Danny was never really healthy until we started him on> nvd..I know that there are many parents whose child did not seem to have any> good response to nvd, and I believe those parents when they say that it> didn't work for their child….but I also know what parents mean when they> say that they notice changes in their kids after starting them on something> new….if an infection clears up after putting a child on an antibiotic, the> antibiotic is usually given credit for curing the infection…but if changes> are noticed after starting a child on a supplement/alternative therapy, many> times people are quick to write it off to coincidence or whatever. I truly> do think that all of our kids have enough differences that no one approach> is going to work exactly the same for every single kid..some kids seem to> need something extra in order to reach certain milestones, others don't.> > KathyR> > > > > > __>

June 1, 2009

Dear Christy:

We had the same experience with my son (3years 6 months. On Gingko since NOv 2008, Prozac since Feb 2009 and oils etc.). Hardly ever cried before, he had to hit himself really very hard (blood) to cry and he also did not seem to understand when he was yeald at by his brothers etc.

Before the protocol, since he was 6 months I used to rub his whole body with different textures (9 times a day) and also rub it with cold (ice) and hot (9 times a day) for months until we saw him react to both, as part of the neurological reorganization program that we followed. He did improve in what he felt, but he still did not react to pain.

Now he reacts to physical and emotional pain.

The other day as he was going down a step he bent his foot and he said "ouch", in such a casual way, I was impressed, it was a first.

Jannette--- Em seg, 1/6/09, kayc0911 escreveu:

De: kayc0911 Assunto: [DownSyndromeInfoExchange] Changing Minds Protocol/"Normal" Reaction to PainPara: DownSyndromeInfoExchange Data: Segunda-feira, 1 de Junho de 2009, 16:32

My son is 20 months old. We started him on Ginkgo Biloba when he was 13 months old and Prozac when he was 14 months old. We added the Body Bio PC and oil when he was 16 months old. One change I've noticed since starting the protocol is that he now has a "normal" reaction to pain. Allow me to explain what I mean.Here are some examples of our son NOT having a "normal" reaction to pain. When Tristen was born, he was in the NICU for 9 days. During that time my husband and I watched as he was poked and prodded with multiple needles, he had his IV changed 4 times - and he never even flinched, never cried, he acted as though nothing happened. At two weeks old, he had his circumcision done in my OB's office - he didn't cry. Throughout the months, he went for immunization shots and NEVER cried. Before starting the protocol (at 13 months), I took him to the hospital to have a battery of bloodwork drawn. He had 7 vials of blood drawn - his

vein stopped giving blood twice and the nurse had to move it all around in his arm trying to find the vein again (made me sick to watch because I have "rolling veins" and this happens to me everytime I have blood drawn - it REALLY hurts). He did not even flinch or attempt to move his arms or legs, never cried, didn't even get upset at being restrained by a second nurse. Both nurses were just amazed that he was so "good." I was just sick inside because I knew that this meant he just wasn't "feeling" things as he should. Throughout his first year I cannot remember a time when he fell over and cried from pain. Even his physical therapist commented many times about him "being tough" because he didn't cry when he bumped his head or fell.Fast forward to today. . . he totally reacts appropriately to pain! He had his blood drawn (just 4 tubes) in April - he screamed, hollered, kicked, turned purple - and it took two people to hold him down while the

nurse drew his blood. He had an immunization shot a couple of months ago and threw a fit! He now cries when he gets a bump. The difference we see is night and day. It is as though he had absolutely no sesitivity to pain before starting the protocol and now his pain sensitivity is normal.Has anyone else noticed this in their child?? Just curious. . . .Christy

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June 1, 2009

Yeah…when I used to tell people that Danny started being

healthy for the first time in his life after we started him on nvd, several

people told me that he probably just got better on his own…that their

child had been sickly until xxx age, then it cleared up..and I believed that it

was the case for their child, but Danny had been on a vitamin for his whole

life (the doc in the NICU started him on Poly Vi sol when he was 3 months old) but

he was always, always sick with something. But within a couple of weeks of

being on nvd, he was suddenly healthy. And I KNEW it was because of the nvd,

but some other parents acted like I was deluded or making it up.

I know that Danny’s speech took a huge upswing within a

couple of weeks of starting gingko..again, some naysayers said that it was

going to happen anyway, on its own. Since he had been having speech therapy since

he was 5 months old with very limited success…gingko was the only new

thing we added at the time (he was around 8 ½ yrs old) I *do* give

gingko the credit. He went from saying stuff like ‘hamburger, slushy, Mom”

to “Mom, I want to go to the library and get a movie and go to Burger

King to get a hamburger and a slushy, please.” His articulation was still

a problem, but the *ideas* were finally there. He could think of more

things to say.

KathyR

From: DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of kayc0911

Sent: Monday, June 01, 2009 6:28 PM

To: DownSyndromeInfoExchange

Subject: [DownSyndromeInfoExchange] Re: Changing Minds Protocol/ " Normal "

Reaction to Pain

" but I also know what parents mean when they say that they notice

changes in their kids after starting them on something new….if an

infection clears up after putting a child on an antibiotic, the antibiotic

is usually given credit for curing the infection…but

if changes are noticed after starting a child on a supplement/alternative

therapy, many times people are quick to write it off to coincidence or

whatever. I truly do think that all of our kids have enough differences

that no one approach is going to work exactly the same for every single

kid..some kids seem to need something extra in order to reach

certain milestones, others don't. "

Kathy -

Thank you for your comments. I have

noticed the same with people " writing off " the positive effects our

son is experiencing since starting the protocol. My husband and I are

very analytical people. As with any treatment, I don't think that

any one thing will work for every0ne. With that said. . . the CMF

protocol *IS* working for OUR son. This was just a

recent realization looking back at my and the timing of the

difference in his pain reaction was quite remarkable to us (looking back over

my notes of his appointments). He went from still having NO pain reaction

at the appointment where they drew 7 vials of blood-just weeks before

starting Prozac- to having a normal pain reaction 1 month after adding

Prozac (and continuing to have a normal pain reaction from that time to present).

Christy

I have not posted any updates here

recently about the progress our son is making.

>

> Danny used to have problems with hyposensitivity, especially in his

mouth…he

> used to want to have Peppercorn Ranch dressing on everything he ate..but

he

> was hypersensitive to sounds…he would be hysterical during a

thunderstorm,

> fireworks, couldn't go to the movies because he couldn't stand the

> sound..now he doesn't like Peppercorn Ranch or any heavily spiced

> foods..says they are `too hot'. Around the same time that that happened,

he

> also became able to tolerate thunderstorms, likes fireworks, and when we

> went to a movie the other day, he wore his ear protecting headphones at

> first, then took them off and handed them to me. (he is not on the CM

> protocol, just NVD, gingko, Omega-3's)He also was also able to be

completely

> toilet trained at 3 ½….way before he ever started on gingko..

>

> I know that there are many kids w/Ds who don't take any kind of

supplements

> who are very healthy…Danny was never really healthy until we started

him on

> nvd..I know that there are many parents whose child did not seem to have

any

> good response to nvd, and I believe those parents when they say that it

> didn't work for their child….but I also know what parents mean when

they

> say that they notice changes in their kids after starting them on

something

> new….if an infection clears up after putting a child on an antibiotic,

the

> antibiotic is usually given credit for curing the infection…but if

changes

> are noticed after starting a child on a supplement/alternative therapy,

many

> times people are quick to write it off to coincidence or whatever. I truly

> do think that all of our kids have enough differences that no one approach

> is going to work exactly the same for every single kid..some kids seem to

> need something extra in order to reach certain milestones, others don't.

>

> KathyR

>

> __

>

June 1, 2009

….if an infection clears up after putting a

child on an antibiotic, the antibiotic is usually given credit for curing the

infection…but if changes are noticed after starting a child on a

supplement/alternative therapy, many times people are quick to write it off to

coincidence or whatever.The only difference is the antibiotics have gone trough rigorous testing and they have proof, there is no proof at the moment that the supplements we are using work or not.

Carol in ILMom to , 8 DSMy problem is not how I look. It's how you see me.Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/

http://downsyndromeinfoexchange.blogspot.com/Listen to oldest dd's music http://www.myspace.com/vennamusic

….if an infection clears up after putting a

child on an antibiotic, the antibiotic is usually given credit for curing the

infection…but if changes are noticed after starting a child on a

supplement/alternative therapy, many times people are quick to write it off to

coincidence or whatever.

June 1, 2009

Yeah,

I know…but we can’t totally discount anecdotal evidence. Parents

have a pretty good idea whether or not something is working for their child.

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of Carol

AnCel

Sent: Monday, June 01, 2009 9:44 PM

To: DownSyndromeInfoExchange

Subject: Re: [DownSyndromeInfoExchange] Changing Minds

Protocol/ " Normal " Reaction to Pain

….if

an infection clears up after putting a child on an antibiotic, the antibiotic

is usually given credit for curing the infection…but if changes are

noticed after starting a child on a supplement/alternative therapy, many times

people are quick to write it off to coincidence or whatever.

The only difference is the

antibiotics have gone trough rigorous testing and they have proof, there is no

proof at the moment that the supplements we are using work or not.

Carol in IL

Mom to , 8 DS

My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

http://health. groups.yahoo. com/group/

DownSyndromeInfo Exchange/

http://downsyndromeinfoexchange.blogspot.com/

Listen to oldest dd's music http://www.myspace.com/vennamusic

….if an infection clears up after putting a child on

an antibiotic, the antibiotic is usually given credit for curing the

infection…but if changes are noticed after starting a child on a

supplement/alternative therapy, many times people are quick to write it off to

coincidence or whatever.

June 1, 2009

Yes. was very similar. The change also started about the same time. However.. she is NOT on the whole protocol. We do some vitamin therapies Flax seed oil stuff like that. We just started her on Gingko so that was not the factor.

I think it may have to do more with an immature nervous system.. that maybe takes a while to " catch up". I am sure the protocol did not hurt that any though.

Steph

[DownSyndromeInfoExchange] Changing Minds Protocol/"Normal" Reaction to Pain

My son is 20 months old. We started him on Ginkgo Biloba when he was 13 months old and Prozac when he was 14 months old. We added the Body Bio PC and oil when he was 16 months old. One change I've noticed since starting the protocol is that he now has a "normal" reaction to pain. Allow me to explain what I mean.Here are some examples of our son NOT having a "normal" reaction to pain. When Tristen was born, he was in the NICU for 9 days. During that time my husband and I watched as he was poked and prodded with multiple needles, he had his IV changed 4 times - and he never even flinched, never cried, he acted as though nothing happened. At two weeks old, he had his circumcision done in my OB's office - he didn't cry. Throughout the months, he went for immunization shots and NEVER cried. Before starting the protocol (at 13 months), I took him to the hospital to have a battery of bloodwork drawn. He had 7 vials of blood drawn - his vein stopped giving blood twice and the nurse had to move it all around in his arm trying to find the vein again (made me sick to watch because I have "rolling veins" and this happens to me everytime I have blood drawn - it REALLY hurts). He did not even flinch or attempt to move his arms or legs, never cried, didn't even get upset at being restrained by a second nurse. Both nurses were just amazed that he was so "good." I was just sick inside because I knew that this meant he just wasn't "feeling" things as he should. Throughout his first year I cannot remember a time when he fell over and cried from pain. Even his physical therapist commented many times about him "being tough" because he didn't cry when he bumped his head or fell.Fast forward to today. . . he totally reacts appropriately to pain! He had his blood drawn (just 4 tubes) in April - he screamed, hollered, kicked, turned purple - and it took two people to hold him down while the nurse drew his blood. He had an immunization shot a couple of months ago and threw a fit! He now cries when he gets a bump. The difference we see is night and day. It is as though he had absolutely no sesitivity to pain before starting the protocol and now his pain sensitivity is normal.Has anyone else noticed this in their child?? Just curious. . . .Christy

June 2, 2009

Pat, Sorry for the confusion! I was commenting on the comparison of supplements to antibiotics. I think it's comparing apples to oranges since anecdotal evidence is not proof and we won't know for sure if this things or not with out the studies. I think anecdotal evidence is a just a place to start the investigation, but not a point on which you could 'hang your hat'.

As for prozac- the fuss for me is very simple- I don't like drugs of any kind and do my best to keep her off of them. Prozac has not been tested long term on children with DS. They do have different brain chemistry and so how this is going to affect them is not known. Now add more drugs into the mix and honestly, no one knows what the results or side effects may, or may not be.

As I said before, is doing as well, if not better then many on the protocol and I am not willing to experiment on her at this point. If she were having a really difficult time, I am sure I would feel differently. I also noticed on the link that Therese or Marsha had sent, that some of the drugs mimicked physical exercise and a very rich environment... so why not just do the exercise and rich environment, instead of risking the drugs?

I do agree we need to be demanding testing and raising money to do so... and that we are doing. How much money have you all raised or donated to the cause? Here in Chicago not ONE DS group is interested in supporting the DSTRF!!!! They are claiming there is not enough money in the 'DS pool' and individuals I guess are very happy to leave their children just as they are with no help to improve their cognition.

Now THIS puzzles *me*. Carol in ILMom to , 8 DSMy problem is not how I look. It's how you see me.Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/

http://downsyndromeinfoexchange.blogspot.com/Listen to oldest dd's music http://www.myspace.com/vennamusic

Carol, Prozac has gone through rigorous testing for years. It is so well known it is already a generic drug. I really cant see what all the fuss is all about if this is all being made with prescription and strict supervision of doctors.

In the past peopleo - including doctors in the DS community were ready and eager to promote drugs like cleregyl and others that later were proved not to work.This is based on drugs that are FDA approved. The only question here is that we dont know what they do together - we are now finding out on our own kids.

I think every DS association in the worlsd should have testing the CM protocol as a priority. We are all seeing what it is doing to our kids - very good improvement in quality of life with minor side effects. Isnt that what all the

DS groups should be about?I say we should ALL get together and pressure for a clinical trial. If we dont do that, all of us - the ones that are " experimentig " with the protocol and the ones who are only throwing stones at it, we ALL will be co-responsible for any harm it might cause on persosns with DS by watching it happen and being negligent. Lets get more consructive here.

Pat

De: Carol AnCel Para: DownSyndromeInfoExchange

Enviadas:

Segunda-feira, 1 de Junho de 2009 21:44:13Assunto: Re: [DownSyndromeInfoExchange] Changing Minds Protocol/ " Normal " Reaction to Pain

….if an infection clears up after putting a

child on an antibiotic, the antibiotic is usually given credit for curing the

infection…but if changes are noticed after starting a child on a

supplement/alternat ive therapy, many times people are quick to write it off to

coincidence or whatever.The only difference is the antibiotics have gone trough rigorous testing and they have proof, there is no proof at the moment that the supplements we are using work or not.

Carol in ILMom to , 8 DSMy problem is not how I look. It's how you see me.Join our Down Syndrome information group -

http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/

http://downsyndrome infoexchange. blogspot. com/Listen to oldest dd's music http://www.myspace. com/vennamusic

On Mon, Jun 1, 2009 at 4:10 PM, Kathy <Kathy_Rcomcast (DOT) net> wrote:

….if an infection clears up after putting a

child on an antibiotic, the antibiotic is usually given credit for curing the

infection…but if changes are noticed after starting a child on a

supplement/alternat ive therapy, many times people are quick to write it off to

coincidence or whatever.

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June 2, 2009

Carol-This statement is true. . .it is true of all supplements we are giving our children (whether they are based on the CMF protocol or others). It is also true of all special diets we put our children on (that is there is no proof that they "work"). As it has been said. . "the proof is in the pudd'in." We have been VERY careful to try and be objective about the CMF protocol. We do NOT want to be giving our son supplements and medicines that are not showing beneficial results.

I would just like to add that before we put our son on the CMF protocol, we consulted a Neurodevelopmental Pediatrician (who sees a lot of kids w/Ds). He was VERY skeptical and negative about us starting Tristen on Ginkgo and Prozac, had nothing nice or encouraging to say about it. I found a different doc willing to work with us on the protocol. Four months later, I took Tristen back to see the first Neurodevelopmental Pediatrician (he had been following him since birth, in the NICU). I made sure he read all of Tristen's evaluations during the appointment (PT, OT, DT, ST). All of his evaluations were completed just before his annual review one week before we started him on Ginkgo and one month before we started him on Prozac. I had the ND Pedi compare those evaluations to his more recent evaluations (quarterly update). To make a very long story short, let me summarize his reaction to the difference in Tristen by his comment (my paraphrase of his comment), "I'm cautiously impressed - kids with Ds do not make this much progress. This may just be a 'spurt' in skills after which he will plateau. Time will tell if this is just a 'spurt' in developmental milestones or if it continues then it may be something we can attribute to the protocol. I am very interested in taking a look at him again in another year - let's see where he is then." So no, I do not have concrete proof that the protocol is working for my son - but I feel I do have a little more proof that just my anecdotal stories. I have his evaluations to compare showing he is making GREAT progress. I have his therapists' comments about how incredible he is doing (they do not know he is on the protocol). As the ND Pedi said, time will tell. . . and our son has experienced NO negative side effects after being on Ginkgo and Prozac for six months now (he was 14 months when we started Prozac).

Christy

> > > ….if an infection clears up after putting a child on an antibiotic, the> > antibiotic is usually given credit for curing the infection…but if changes> > are noticed after starting a child on a supplement/alternative therapy, many> > times people are quick to write it off to coincidence or whatever.>

June 2, 2009

"How much money have you all raised or donated to the cause?"

Carol - I find you comment above tasteless and sarcastic and not in the spirit or the purpose of this list, as I understand it. Yes, it is commendable that you organize a golf event to raise money. You also mentioned previously that you were going to make a donation when your husband got his Christmas bonus. You need to keep in mind that not everyone is in your fortunate position and that does NOT minimize their contribution to the cause.

I would like to quote some scripture from Luke 21: 1-4, "And he looked up, and saw the rich men casting their gifts into the treasury. And he saw also a certain poor widow casting in thither two mites. And he said, Of a truth I say unto you, that this poor widow hath cast in more than they all: For all these have of their abundance cast in unto the offerings of God: but she of her penury hath cast in all the living that she had."

I would like to add 6:1-4 where Jesus said, "Take heed that ye do not your alms before men, to be seen of them: otherwise ye have no reward of your Father which is in heaven. Therefore when thou doest thine alms, do not sound a trumet before thee, as the hypocrites do in the synagogues and in the streets, that they may have glory of men. Verily I say unto you, They have their reward. But when thou doest alms, let not thy left hand know what thy right hand doeth: That thine alms may be in secret: and thy Father which seeth in secret himself shall reward thee openly. I quote that to say. . .just because one does not post openly on a listserv about what money he/she raises or donates does not mean that that person is not raising money or donating.

Christy

> >> >> ….if an infection clears up after putting a child on an antibiotic, the> >> antibiotic is usually given credit for curing the infection…but if changes> >> are noticed after starting a child on a supplement/alternat ive therapy,> >> many times people are quick to write it off to coincidence or whatever.> >> >> >> > ------------------------------> > Veja quais são os assuntos do momento no Yahoo! + Buscados: Top 10<http://br.rd.yahoo.com/mail/taglines/mail/*http://br.maisbuscados.yahoo.com/>-> > Celebridades<http://br.rd.yahoo.com/mail/taglines/mail/*http://br.maisbuscados.yahoo.com/celebridades/>-> > Música<http://br.rd.yahoo.com/mail/taglines/mail/*http://br.maisbuscados.yahoo.com/m%C3%BAsica/>-> > Esportes<http://br.rd.yahoo.com/mail/taglines/mail/*http://br.maisbuscados.yahoo.com/esportes/>> > > >>

June 2, 2009

Again, sorry for the confusion. I agree that the proof is in the pudding. I myself use things not proven, but this is not going to be accepted by many nor can any of these protocols be used for the DS community at large with out the studies or scientific proof that it works so that Doctors can prescribe it confidently, isn't that we ultimately want? For a proven treatment that would be available to ALL?

No matter your results with the protocol, it will never enough to convince *me* to use it on my child with out the studies, and I know I am not the only one. I am much more willing to try things that don't have any side effects, but I do draw the line with using untested/unproven drugs/combinations with out long term studies, when I can get the same results with out the risks.

I certainly do not question that you all are getting great results! I too have seen great results with the ginkgo/diet/oils/exercise/stimulation and believe she would not have made the progress she has with those things! We are in the same book, just different page. :-)

Carol in ILMom to , 8 DSMy problem is not how I look. It's how you see me.Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/

http://downsyndromeinfoexchange.blogspot.com/Listen to oldest dd's music http://www.myspace.com/vennamusic

Carol-This statement is true. . .it is true of all supplements we are giving our children (whether they are based on the CMF protocol or others). It is also true of all special diets we put our children on (that is there is no proof that they " work " ). As it has been said. . " the proof is in the pudd'in. " We have been VERY careful to try and be objective about the CMF protocol. We do NOT want to be giving our son supplements and medicines that are not showing beneficial results.

I would just like to add that before we put our son on the CMF protocol, we consulted a Neurodevelopmental Pediatrician (who sees a lot of kids w/Ds). He was VERY skeptical and negative about us starting Tristen on Ginkgo and Prozac, had nothing nice or encouraging to say about it. I found a different doc willing to work with us on the protocol. Four months later, I took Tristen back to see the first Neurodevelopmental Pediatrician (he had been following him since birth, in the NICU). I made sure he read all of Tristen's evaluations during the appointment (PT, OT, DT, ST). All of his evaluations were completed just before his annual review one week before we started him on Ginkgo and one month before we started him on Prozac. I had the ND Pedi compare those evaluations to his more recent evaluations (quarterly update). To make a very long story short, let me summarize his reaction to the difference in Tristen by his comment (my paraphrase of his comment), " I'm cautiously impressed - kids with Ds do not make this much progress. This may just be a 'spurt' in skills after which he will plateau. Time will tell if this is just a 'spurt' in developmental milestones or if it continues then it may be something we can attribute to the protocol. I am very interested in taking a look at him again in another year - let's see where he is then. " So no, I do not have concrete proof that the protocol is working for my son - but I feel I do have a little more proof that just my anecdotal stories. I have his evaluations to compare showing he is making GREAT progress. I have his therapists' comments about how incredible he is doing (they do not know he is on the protocol). As the ND Pedi said, time will tell. . . and our son has experienced NO negative side effects after being on Ginkgo and Prozac for six months now (he was 14 months when we started Prozac).

Christy

> > > ….if an infection clears up after putting a child on an antibiotic, the> > antibiotic is usually given credit for curing the infection…but if changes> > are noticed after starting a child on a supplement/alternative therapy, many

> > times people are quick to write it off to coincidence or whatever.>

June 2, 2009

To be honest...I really do not think one could coorelate this change to the CMP.

I think your child just has gotten older and more aware. Most kids react to the

blood draws IV's before the actual stick and really have no difference in

reaction when the needle stick is made. Nate is pretty good with them and he

has gotten worse as he aged. Kids also pick up on the parent response. I think

Nate is so good because I am a nurse and I know it doesn't hurt much, he reacts

more anticipatory. Most infants do not have much response at all to the

needle sticks, etc. I have watched many circs and these kids react to the cold

not the circ itself. Nate had his at 2 months of age and was great with it

wtihout sedation or anything other than tylenol.....a little older and he would

have had problems according to my OB he was at the border age and most kids will

tolerate it done till about 2 1/2 months of age. I honestly do not believe the

CMF is making the difference in his response. I think you are searching and

putting your child too much under a microscope looking for some changes and some

are just going to be normal developmental changes.

I dislike that those who are on this protocal are making statements that they

cannot see why others are not trying their kids on this protocol. Well both my

husband and I have an extensive medical background and we just don't " buy " in to

it just yet. Not that we won't in the future but medication have side effects

and the science is just not there yet to support this yet especially with young

child. The first thing in medical shcool you learn is to do not harm. I look

at the things children who are around the same age as Nate who are on the

potocol and he is doing the same stuff if not more advanced. So you can see why

I am not on board yet. I say yet, because I am not opposed to it just not yet

for my child.

Sherry

>

> My son is 20 months old. We started him on Ginkgo Biloba when he was 13

> months old and Prozac when he was 14 months old. We added the Body Bio

> PC and oil when he was 16 months old. One change I've noticed since

> starting the protocol is that he now has a " normal " reaction to pain.

> Allow me to explain what I mean.

>

> Here are some examples of our son NOT having a " normal " reaction to

> pain. When Tristen was born, he was in the NICU for 9 days. During that

> time my husband and I watched as he was poked and prodded with multiple

> needles, he had his IV changed 4 times - and he never even flinched,

> never cried, he acted as though nothing happened. At two weeks old, he

> had his circumcision done in my OB's office - he didn't cry. Throughout

> the months, he went for immunization shots and NEVER cried. Before

> starting the protocol (at 13 months), I took him to the hospital to have

> a battery of bloodwork drawn. He had 7 vials of blood drawn - his vein

> stopped giving blood twice and the nurse had to move it all around in

> his arm trying to find the vein again (made me sick to watch because I

> have " rolling veins " and this happens to me everytime I have blood drawn

> - it REALLY hurts). He did not even flinch or attempt to move his arms

> or legs, never cried, didn't even get upset at being restrained by a

> second nurse. Both nurses were just amazed that he was so " good. " I was

> just sick inside because I knew that this meant he just wasn't " feeling "

> things as he should. Throughout his first year I cannot remember a time

> when he fell over and cried from pain. Even his physical therapist

> commented many times about him " being tough " because he didn't cry when

> he bumped his head or fell.

>

> Fast forward to today. . . he totally reacts appropriately to pain! He

> had his blood drawn (just 4 tubes) in April - he screamed, hollered,

> kicked, turned purple - and it took two people to hold him down while

> the nurse drew his blood. He had an immunization shot a couple of months

> ago and threw a fit! He now cries when he gets a bump. The difference we

> see is night and day. It is as though he had absolutely no sesitivity to

> pain before starting the protocol and now his pain sensitivity is

> normal.

>

> Has anyone else noticed this in their child?? Just curious. . . .

>

> Christy

>

June 2, 2009

Sherry- I have to respectfully disagree with your comment, "I honestly do not believe the CMF is making the difference in his response. I think you are searching and putting your child too much under a microscope looking for some changes and some are just going to be normal developmental changes." We have been very careful about our analysis of his progress. We are not basing his progress solely on our stories and observations. We are basing our statements on his progress on his evaluations by his PT, OT, ST, & DT. They are unbiased opinions (they do not know he is on the protocol), and they are showing that he is NOT falling further behind, in fact in some areas he is not only making month for month progress (3 months progress in 3 months time), he is *closing the gap* (making 6.3 months progress in 3 months time in one area).

" I dislike that those who are on this protocal are making statements that they cannot see why others are not trying their kids on this protocol. "

I totally understand your comment above. I have never made such a statement. In fact, I've said that there are certain unknown risks that potentially could be involved and if you, as a parent, cannot live with those possibel consequences then this protocol is not for you or your family. As for us, our son is 20 months old and has been on Ginkgo, Prozac, and the Body Bio PC and oils for 6 months. He has experienced no negative side effects to date.

Christy

> >> > My son is 20 months old. We started him on Ginkgo Biloba when he was 13> > months old and Prozac when he was 14 months old. We added the Body Bio> > PC and oil when he was 16 months old. One change I've noticed since> > starting the protocol is that he now has a "normal" reaction to pain.> > Allow me to explain what I mean.> > > > Here are some examples of our son NOT having a "normal" reaction to> > pain. When Tristen was born, he was in the NICU for 9 days. During that> > time my husband and I watched as he was poked and prodded with multiple> > needles, he had his IV changed 4 times - and he never even flinched,> > never cried, he acted as though nothing happened. At two weeks old, he> > had his circumcision done in my OB's office - he didn't cry. Throughout> > the months, he went for immunization shots and NEVER cried. Before> > starting the protocol (at 13 months), I took him to the hospital to have> > a battery of bloodwork drawn. He had 7 vials of blood drawn - his vein> > stopped giving blood twice and the nurse had to move it all around in> > his arm trying to find the vein again (made me sick to watch because I> > have "rolling veins" and this happens to me everytime I have blood drawn> > - it REALLY hurts). He did not even flinch or attempt to move his arms> > or legs, never cried, didn't even get upset at being restrained by a> > second nurse. Both nurses were just amazed that he was so "good." I was> > just sick inside because I knew that this meant he just wasn't "feeling"> > things as he should. Throughout his first year I cannot remember a time> > when he fell over and cried from pain. Even his physical therapist> > commented many times about him "being tough" because he didn't cry when> > he bumped his head or fell.> > > > Fast forward to today. . . he totally reacts appropriately to pain! He> > had his blood drawn (just 4 tubes) in April - he screamed, hollered,> > kicked, turned purple - and it took two people to hold him down while> > the nurse drew his blood. He had an immunization shot a couple of months> > ago and threw a fit! He now cries when he gets a bump. The difference we> > see is night and day. It is as though he had absolutely no sesitivity to> > pain before starting the protocol and now his pain sensitivity is> > normal.> > > > Has anyone else noticed this in their child?? Just curious. . . .> > > > Christy> >>

June 2, 2009

This is a very interesting discussion. We've gone around and around before. But everytime I read, "we would do it if we had a proven study". Again, I ask you what type of study would satisfy you?

We have 30 years of giving prozac to people- that's the best you are going to get.

There is 50 years with ritalin (focalin).

Most of the practice of medicine comes from observation not studies. So observations made are absolutely legitimate.

You stated: 'the first thing you learn in medical school is do no harm' -this is true. However, all the research indicates that there is severe decline in DS as they age. This is the stark reality coming.

And also, I don't think getting to the 2nd grade is enough. I want more for Neal. (and he wasn't going to get to 2nd grade easily). Reality says there are not many with DS that do very well as adults. The paragraph describing DS in medical books is true unless something else is done. We have had a couple of generations that had early intervention, it is not enough. Why would our children turn out any differently?

Subject: [DownSyndromeInfoExchange] Re: Changing Minds Protocol/"Normal" Reaction to PainTo: DownSyndromeInfoExchange Date: Tuesday, June 2, 2009, 2:13 PM

To be honest...I really do not think one could coorelate this change to the CMP. I think your child just has gotten older and more aware. Most kids react to the blood draws IV's before the actual stick and really have no difference in reaction when the needle stick is made. Nate is pretty good with them and he has gotten worse as he aged. Kids also pick up on the parent response. I think Nate is so good because I am a nurse and I know it doesn't hurt much, he reacts more anticipatory. Most infants do not have much response at all to the needle sticks, etc. I have watched many circs and these kids react to the cold not the circ itself. Nate had his at 2 months of age and was great with it wtihout sedation or anything other than tylenol...... a little older and he would have had problems according to my OB he was at the border age and most kids will tolerate it done till about 2 1/2 months of age. I honestly do not believe the CMF is making the

difference in his response. I think you are searching and putting your child too much under a microscope looking for some changes and some are just going to be normal developmental changes.I dislike that those who are on this protocal are making statements that they cannot see why others are not trying their kids on this protocol. Well both my husband and I have an extensive medical background and we just don't "buy" in to it just yet. Not that we won't in the future but medication have side effects and the science is just not there yet to support this yet especially with young child. The first thing in medical shcool you learn is to do not harm. I look at the things children who are around the same age as Nate who are on the potocol and he is doing the same stuff if not more advanced. So you can see why I am not on board yet. I say yet, because I am not opposed to it just not yet for my child.Sherry>> My son is 20 months old. We started him on Ginkgo Biloba when he was 13> months old and Prozac when he was 14 months old. We added the Body Bio> PC and oil when he was 16 months old. One change I've noticed since> starting the protocol is that he now has a "normal" reaction to pain..> Allow me to explain what I mean.> > Here are some examples of our son NOT having a "normal" reaction to> pain. When Tristen was born, he was in the NICU for 9 days. During that> time my husband and I watched as he was poked and prodded with multiple> needles, he had his IV changed 4 times - and he never even flinched,> never

cried, he acted as though nothing happened. At two weeks old, he> had his circumcision done in my OB's office - he didn't cry. Throughout> the months, he went for immunization shots and NEVER cried. Before> starting the protocol (at 13 months), I took him to the hospital to have> a battery of bloodwork drawn. He had 7 vials of blood drawn - his vein> stopped giving blood twice and the nurse had to move it all around in> his arm trying to find the vein again (made me sick to watch because I> have "rolling veins" and this happens to me everytime I have blood drawn> - it REALLY hurts). He did not even flinch or attempt to move his arms> or legs, never cried, didn't even get upset at being restrained by a> second nurse. Both nurses were just amazed that he was so "good." I was> just sick inside because I knew that this meant he just wasn't "feeling"> things as he should.

Throughout his first year I cannot remember a time> when he fell over and cried from pain. Even his physical therapist> commented many times about him "being tough" because he didn't cry when> he bumped his head or fell.> > Fast forward to today. . . he totally reacts appropriately to pain! He> had his blood drawn (just 4 tubes) in April - he screamed, hollered,> kicked, turned purple - and it took two people to hold him down while> the nurse drew his blood. He had an immunization shot a couple of months> ago and threw a fit! He now cries when he gets a bump. The difference we> see is night and day. It is as though he had absolutely no sesitivity to> pain before starting the protocol and now his pain sensitivity is> normal.> > Has anyone else noticed this in their child?? Just curious. . . ..> >

Christy>

June 2, 2009

BTW, I just wanted to add that I did not make the realization of Tristen's pain reaction until this week. Yes, I had noticed that he now reacted to pain, but it wasn't until I read a posting by Miriam Kauk at http://einstein-syndrome.com/ where she talked about Deep Pressure techniques that made me look back at my notes and compare them to my calendar of appointments. No, we did not do Deep Pressure with Tristen (this was the first I'd heard of it). However, what got me thinking after reading it was that I remembered back to when Tristen had NO reaction to pain. Reading the article made me look back at my notes of his appointments and accomplishments (I have kept a diary of sorts since he was born) and compare those notes to my appointment calendar. It was then that I discovered the ironic *TIMING* of the change in his ability to react to pain. He still had NO pain reaction just before starting Ginkgo and then we added Prozac. Just one month later, I made notes of where he started reacting to pain - bumps, bruises, shots, etc (whereas my previous notes over the YEAR expressed concern about him having NO reaction to pain when he should have). This was just a realization that I "happened" upon - I would have never looked for it or expected it otherwise.

Christy

> > >> > > My son is 20 months old. We started him on Ginkgo Biloba when he was> 13> > > months old and Prozac when he was 14 months old. We added the Body> Bio> > > PC and oil when he was 16 months old. One change I've noticed since> > > starting the protocol is that he now has a "normal" reaction to> pain.> > > Allow me to explain what I mean.> > >> > > Here are some examples of our son NOT having a "normal" reaction to> > > pain. When Tristen was born, he was in the NICU for 9 days. During> that> > > time my husband and I watched as he was poked and prodded with> multiple> > > needles, he had his IV changed 4 times - and he never even flinched,> > > never cried, he acted as though nothing happened. At two weeks old,> he> > > had his circumcision done in my OB's office - he didn't cry.> Throughout> > > the months, he went for immunization shots and NEVER cried. Before> > > starting the protocol (at 13 months), I took him to the hospital to> have> > > a battery of bloodwork drawn. He had 7 vials of blood drawn - his> vein> > > stopped giving blood twice and the nurse had to move it all around> in> > > his arm trying to find the vein again (made me sick to watch because> I> > > have "rolling veins" and this happens to me everytime I have blood> drawn> > > - it REALLY hurts). He did not even flinch or attempt to move his> arms> > > or legs, never cried, didn't even get upset at being restrained by a> > > second nurse. Both nurses were just amazed that he was so "good." I> was> > > just sick inside because I knew that this meant he just wasn't> "feeling"> > > things as he should. Throughout his first year I cannot remember a> time> > > when he fell over and cried from pain. Even his physical therapist> > > commented many times about him "being tough" because he didn't cry> when> > > he bumped his head or fell.> > >> > > Fast forward to today. . . he totally reacts appropriately to pain!> He> > > had his blood drawn (just 4 tubes) in April - he screamed, hollered,> > > kicked, turned purple - and it took two people to hold him down> while> > > the nurse drew his blood. He had an immunization shot a couple of> months> > > ago and threw a fit! He now cries when he gets a bump. The> difference we> > > see is night and day. It is as though he had absolutely no> sesitivity to> > > pain before starting the protocol and now his pain sensitivity is> > > normal.> > >> > > Has anyone else noticed this in their child?? Just curious. . . .> > >> > > Christy> > >> >>

June 2, 2009

Have these drugs been studied in people w/Ds? What are the

long term effects (minimum 2-5 yrs) on the brains of children who were started

on Prozac as infants or toddlers?

Has the combination of Prozac and Focalin been studied in people

with Ds? What are the long term effects (minimum 2-5 yrs) on the brain of the

combination?

How long do the positive effects last after the drugs are

discontinued? Or is the protocol something that will have to be taken for the

rest of the person’s life?

I want more for Danny, too…I would love for him to be able

to progress more quickly than he does right now. BUT..I do worry about the

possibility of long term negative effects of the drugs..especially of the

combination of drugs in the protocol. And since he is doing ok right now, I

just am not willing to use the protocol until it has been proven that the

combination of drugs does not have harmful long term effects in people w/Ds.

Instead of debating back and forth on this to try to convince

the other ‘side’, that what we are doing (or not doing) is the way

to go, it would probably be best to for us all to contribute what we can afford

to research-because until the studies are done, even excellent results will be

seen as anecdotal by the medical/Ds community at large, and you will continue

to meet with resistance on the part of the powers that be.

Parents need to be able to make their decisions based on what

they believe is right and safe for their own kids…not because they are

being pressured to jump on the bandwagon before they feel comfortable using the

protocol. There was a lot of that with NVD, and it didn’t turn out

well..fractured the Ds community, when it really didn’t need to, imo. And

I am not saying that is what you are trying to do..you are understandably

excited about the results you are seeing..but please understand that some

parents are just not ‘pioneers’…and there is nothing wrong

with that, imo.

KathyR

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of

Cody

Sent: Tuesday, June 02, 2009 12:40 PM

To: DownSyndromeInfoExchange

Subject: Re: [DownSyndromeInfoExchange] Re: Changing Minds

Protocol/ " Normal " Reaction to Pain

This is a very interesting discussion. We've gone around

and around before. But everytime I read, " we would do it if we had

a proven study " . Again, I ask you what type of study would satisfy you?

We have 30 years of giving prozac to people- that's

the best you are going to get.

There is 50 years with ritalin (focalin).

Most of the practice of medicine comes from observation

not studies. So observations made are absolutely legitimate.

You stated: 'the first thing you learn in medical

school is do no harm' -this is true. However, all the research indicates that

there is severe decline in DS as they age. This is the stark reality coming.

And also, I don't think getting to the 2nd grade is

enough. I want more for Neal. (and he wasn't going to get to 2nd grade

easily). Reality says there are not many with DS that do very well as adults.

The paragraph describing DS in medical books is true unless something else is

done. We have had a couple of generations that had early intervention, it is

not enough. Why would our children turn out any differently?

Subject: [DownSyndromeInfoExchange] Re: Changing Minds

Protocol/ " Normal " Reaction to Pain

To: DownSyndromeInfoExchange

Date: Tuesday, June 2, 2009, 2:13 PM

To be honest...I really do

not think one could coorelate this change to the CMP. I think your child just

has gotten older and more aware. Most kids react to the blood draws IV's

before the actual stick and really have no difference in reaction when the needle

stick is made. Nate is pretty good with them and he has gotten worse as he

aged. Kids also pick up on the parent response. I think Nate is so good

because I am a nurse and I know it doesn't hurt much, he reacts more

anticipatory. Most infants do not have much response at all to the needle

sticks, etc. I have watched many circs and these kids react to the cold not

the circ itself. Nate had his at 2 months of age and was great with it

wtihout sedation or anything other than tylenol...... a little older and he

would have had problems according to my OB he was at the border age and most

kids will tolerate it done till about 2 1/2 months of age. I honestly do not

believe the CMF is making the difference in his response. I think you are

searching and putting your child too much under a microscope looking for some

changes and some are just going to be normal developmental changes.

I dislike that those who are on this protocal are making statements that they

cannot see why others are not trying their kids on this protocol. Well both

my husband and I have an extensive medical background and we just don't

" buy " in to it just yet. Not that we won't in the future but

medication have side effects and the science is just not there yet to support

this yet especially with young child. The first thing in medical shcool you

learn is to do not harm. I look at the things children who are around the

same age as Nate who are on the potocol and he is doing the same stuff if not

more advanced. So you can see why I am not on board yet. I say yet, because I

am not opposed to it just not yet for my child.

Sherry

>

> My son is 20 months old. We started him on Ginkgo Biloba when he was 13

> months old and Prozac when he was 14 months old. We added the Body Bio

> PC and oil when he was 16 months old. One change I've noticed since

> starting the protocol is that he now has a " normal " reaction

to pain..

> Allow me to explain what I mean.

>

> Here are some examples of our son NOT having a " normal "

reaction to