transfusions and immunizations

August 12, 1999

Dear Jeannine,

I agree completely that we need to be checking our kids titer levels before

we doe ANYTHING that might affect their immune system function. I had

Mitch's (my 4 y.o.) titer levels run before we did his first round of shots,

and plan to do it again before we do anything else. Gets your brain gears to

spinnning, huh?!

ruth

August 13, 1999

Jeannine and Curtis Sawyer wrote:

>

> This is really interesting Ruth, and also explains some of the concerns

> about children who've recieved IVIG, or blood transusions getting MMR

> vaccine. Most blood comes from adults, and most adults have titers, so

> our kids have the same titers.

**********************

This is also true for - who also gets IVIG. We've been refusing

vaccines based on the fact that his tests show he has all the

appropriate titers - even for things like Hep B which he hasn't had ANY

immunizations for.

I agree that testing these levels should be more common place.

August 13, 1999

Jeannine and Curtis Sawyer wrote:

>

> This is really interesting Ruth, and also explains some of the concerns

> about children who've recieved IVIG, or blood transusions getting MMR

> vaccine. Most blood comes from adults, and most adults have titers, so

> our kids have the same titers.

**********************

This is also true for - who also gets IVIG. We've been refusing

vaccines based on the fact that his tests show he has all the

appropriate titers - even for things like Hep B which he hasn't had ANY

immunizations for.

I agree that testing these levels should be more common place.

August 14, 1999

I wonder what it would take to get all of us parents with these little

nuggets of info to present a panel at the UMDF conference. I seriously have

learned more on this list in a month than I did from my daughters 13

*specialists* in 16 months. Just a thought...............

ruth

August 14, 1999

I wonder what it would take to get all of us parents with these little

nuggets of info to present a panel at the UMDF conference. I seriously have

learned more on this list in a month than I did from my daughters 13

*specialists* in 16 months. Just a thought...............

ruth

August 14, 1999

I wonder what it would take to get all of us parents with these little

nuggets of info to present a panel at the UMDF conference. I seriously have

learned more on this list in a month than I did from my daughters 13

*specialists* in 16 months. Just a thought...............

ruth

August 14, 1999

> Anyway, her boy has undergone alot of treatment not considered

conventional

> (sound desensitization, intraveneous gamma0globulin infusions, and LOTS

of

> alternative treatments) and now you would never know that he had once

been

> diagnosed as having austim.

Ruth,

WOW this was interesting to me. My 7 year old was diagnosed with autism

informally when he was about 18 months and formally labeled with that at

age 3. Like that little boy he was never the same after his first MMR shot

at 15 months. He had never been an outgoing baby as he had been through a

lot medically and was scared of strangers. But he was definitely not

autistic before that. He also regressed and lost all his language, had an

exacerbation of neuro symptoms and lost some gross motor skills. At 18

months he got the DTP and slipped further away.

Eventually he was diagnosed with a probably Mito disease at age 28 months

and most physicians considered that course after the MMR to be related to

manifestation of his Mito disease. I always felt that the MMR and pertusis

helped speed up the process in someway although I certainly do not have

proof of that.

When Zachary turned four he started to appear less autistic and by the time

he was 6 it was almost nil. In April he turned 7 and I have to say I just

can't see anything that would classify him with that diagnosis anymore.

His physicians agree. His speech is not only age appropriate but his use of

language is age appropriate or above. Socially he is shyer with peer than

adults but is perfectly capable of interacting without cues and in a very

spontaneous way. When it came time for his immunizations last fall we

held the MMR and the pertusis - did not even give the acellular one. The

neuro and ped were in complete agreement with that.

Your post makes me wonder if his improvement in regards to autism occurred

simply because more and more time has elapsed since he received the insult

of those particular vaccinations. Medically, he has actually gotten worse

each year and markedly in the past 2 years. Thanks for your insights.

Anne, mom to:

Brittany, 12

Zachary, 7, G tube, J tube, CVL for TPN/lipids, adrenal insufficient

Abby, 6 ,

, 27 months, G tube, J tube, CVL for TPN/lipids, GH deficient

***Mitochondrial encephalomyopathy, (complex 1 and 4 OxPhos defect)***

August 14, 1999

This is a wonderful message, Ruth. It just supports the need for this list.

I believe we all have much to offer each other. Thanks for the comments.

Alice

Re: transfusions and immunizations

>From: Hilandgang@...

>

>I wonder what it would take to get all of us parents with these little

>nuggets of info to present a panel at the UMDF conference. I seriously

have

>learned more on this list in a month than I did from my daughters 13

>*specialists* in 16 months. Just a thought...............

>

>ruth

>

>---------------------------

August 14, 1999

This is a wonderful message, Ruth. It just supports the need for this list.

I believe we all have much to offer each other. Thanks for the comments.

Alice

Re: transfusions and immunizations

>From: Hilandgang@...

>

>I wonder what it would take to get all of us parents with these little

>nuggets of info to present a panel at the UMDF conference. I seriously

have

>learned more on this list in a month than I did from my daughters 13

>*specialists* in 16 months. Just a thought...............

>

>ruth

>

>---------------------------

August 17, 1999

Anne,

Your post just blew my mind! I have never heard of such a thing when the

symptoms just began to dissipate over the years, but it does make perfect

sense that it was his body's response to the MMR and DPT shots that gave him

the symptoms of autism. This is so interesting--I had never thought of a

mito disorder as being the root cause of Garrett's problems but it sure would

explain alot. I have also noticed two other interesting things about autism:

first, the term is used very broadly, describing a host a symptoms and many

different levels of severity. Many of the cases where the child was labeled

as being autistic turn out to not have autism at all, but their severe

sensory integration and motor planning and visual/auditory processing

problems sure make it seem that way. Second observation is that the number

of cases of children with this diagnosis has just become astronomical over

the past decade or so. We are now seeing entire programs being set up just

to meet the needs of these children. Hmmmm.......makes me wonder *why*?

What is the link? Could there be many more kids with mito problems

exhibiting symptoms of autism??? Just food for thought.

ruth

August 17, 1999

Ruth-

My 25 year old son also had autistic like symtoms when he was young. He still

has some sensory

sensitivities which are worse when he is stressed, but overall they are gone. He

is no longer compulsive

and can now make eye contact some (he has worked hard on this). He was never

labeled as autistic due to

the criteria at the time he was young. It had to include mental impairment at

that time. I am glad that

we just dealt with it and it gradly improved.

Laurie

> Your post just blew my mind! I have never heard of such a thing when the

> symptoms just began to dissipate over the years, but it does make perfect

> sense that it was his body's response to the MMR and DPT shots that gave him

> the symptoms of autism.

August 17, 1999

Ruth-

My 25 year old son also had autistic like symtoms when he was young. He still

has some sensory

sensitivities which are worse when he is stressed, but overall they are gone. He

is no longer compulsive

and can now make eye contact some (he has worked hard on this). He was never

labeled as autistic due to

the criteria at the time he was young. It had to include mental impairment at

that time. I am glad that

we just dealt with it and it gradly improved.

Laurie

> Your post just blew my mind! I have never heard of such a thing when the

> symptoms just began to dissipate over the years, but it does make perfect

> sense that it was his body's response to the MMR and DPT shots that gave him

> the symptoms of autism.

August 17, 1999

My son was labled MR with autistic like behaviors. This determination was

changed when he became an adult and a Neuro from Boston determined that he

was not Autisic and that the previous neuros were in error. Hmmmmm. This

thread really makes me wonder.

Alice

Re: transfusions and immunizations

>

>Ruth-

>

>My 25 year old son also had autistic like symtoms when he was young. He

still has some sensory

>sensitivities which are worse when he is stressed, but overall they are

gone. He is no longer compulsive

>and can now make eye contact some (he has worked hard on this). He was

never labeled as autistic due to

>the criteria at the time he was young. It had to include mental impairment

at that time. I am glad that

>we just dealt with it and it gradly improved.

>

>Laurie

>

>> Your post just blew my mind! I have never heard of such a thing when the

>> symptoms just began to dissipate over the years, but it does make perfect

>> sense that it was his body's response to the MMR and DPT shots that gave

him

>> the symptoms of autism.

>

>---------------------------

August 17, 1999

My son was labled MR with autistic like behaviors. This determination was

changed when he became an adult and a Neuro from Boston determined that he

was not Autisic and that the previous neuros were in error. Hmmmmm. This

thread really makes me wonder.

Alice

Re: transfusions and immunizations

>

>Ruth-

>

>My 25 year old son also had autistic like symtoms when he was young. He

still has some sensory

>sensitivities which are worse when he is stressed, but overall they are

gone. He is no longer compulsive

>and can now make eye contact some (he has worked hard on this). He was

never labeled as autistic due to

>the criteria at the time he was young. It had to include mental impairment

at that time. I am glad that

>we just dealt with it and it gradly improved.

>

>Laurie

>

>> Your post just blew my mind! I have never heard of such a thing when the

>> symptoms just began to dissipate over the years, but it does make perfect

>> sense that it was his body's response to the MMR and DPT shots that gave

him

>> the symptoms of autism.

>

>---------------------------

August 17, 1999

Alice-

Kent was very sensory sensitive, to the point he didn't want to be held. That

isn't something that mom's

like to deal with, at least not this mom. Once he was a toddler, he preferred to

sit under furniture and

watch what was going on. In pre-school, they said he was anitsocial, because he

wouldn't sit with the

group. He didn't make eye contact and didn't like to be touched. He was

compulsive about many things - he

needed all his shoes lined up just right or had to have all his cars lined up.

He was fastinated by

rolling objects and would roll marbles for very long periods of time. He also

had a very hard time with

transitions. From hearing so many kids with mito who are diagnosed with autisim

or autistic like

symptoms, I really think it was due to the mito.

Laurie

> My son was labled MR with autistic like behaviors. This determination was

> changed when he became an adult and a Neuro from Boston determined that he

> was not Autisic and that the previous neuros were in error. Hmmmmm. This

> thread really makes me wonder.

August 17, 1999

Alice-

Kent was very sensory sensitive, to the point he didn't want to be held. That

isn't something that mom's

like to deal with, at least not this mom. Once he was a toddler, he preferred to

sit under furniture and

watch what was going on. In pre-school, they said he was anitsocial, because he

wouldn't sit with the

group. He didn't make eye contact and didn't like to be touched. He was

compulsive about many things - he

needed all his shoes lined up just right or had to have all his cars lined up.

He was fastinated by

rolling objects and would roll marbles for very long periods of time. He also

had a very hard time with

transitions. From hearing so many kids with mito who are diagnosed with autisim

or autistic like

symptoms, I really think it was due to the mito.

Laurie

> My son was labled MR with autistic like behaviors. This determination was

> changed when he became an adult and a Neuro from Boston determined that he

> was not Autisic and that the previous neuros were in error. Hmmmmm. This

> thread really makes me wonder.

August 17, 1999

Alice-

Kent was very sensory sensitive, to the point he didn't want to be held. That

isn't something that mom's

like to deal with, at least not this mom. Once he was a toddler, he preferred to

sit under furniture and

watch what was going on. In pre-school, they said he was anitsocial, because he

wouldn't sit with the

group. He didn't make eye contact and didn't like to be touched. He was

compulsive about many things - he

needed all his shoes lined up just right or had to have all his cars lined up.

He was fastinated by

rolling objects and would roll marbles for very long periods of time. He also

had a very hard time with

transitions. From hearing so many kids with mito who are diagnosed with autisim

or autistic like

symptoms, I really think it was due to the mito.

Laurie

> My son was labled MR with autistic like behaviors. This determination was

> changed when he became an adult and a Neuro from Boston determined that he

> was not Autisic and that the previous neuros were in error. Hmmmmm. This

> thread really makes me wonder.

August 17, 1999

Ruth,

I don't often respond to postings cause I am still new at this, but, among

the many diagnosis's we have had in my son's life, the second to the most

recent was Asperger's Syndrome (High Functioning Autism). Interestingly

enough my three year old nephew was recently diagnosed with Autism and is

very similar to my son at that age. Needless to say after our son's diagnosis

of Complex 1 my sister changed neuros. Our neuro is a very wise man and is

going to have labwork done to see if he has any abnormalities in lactic acid,

pyruvate etc.

I particularly wonder if the 30-40% of students who have both autism and a

seizure disorder, actually have a mito disorder underlaying it all. (Which

was my son's case.)

Laurel

August 17, 1999

Ruth,

I don't often respond to postings cause I am still new at this, but, among

the many diagnosis's we have had in my son's life, the second to the most

recent was Asperger's Syndrome (High Functioning Autism). Interestingly

enough my three year old nephew was recently diagnosed with Autism and is

very similar to my son at that age. Needless to say after our son's diagnosis

of Complex 1 my sister changed neuros. Our neuro is a very wise man and is

going to have labwork done to see if he has any abnormalities in lactic acid,

pyruvate etc.

I particularly wonder if the 30-40% of students who have both autism and a

seizure disorder, actually have a mito disorder underlaying it all. (Which

was my son's case.)

Laurel

August 18, 1999

Laurie,

This is so fascinating. What does your son tell you about his sensory

integration difficulties? I'm curious because my daughter has tactile

problems as well and I wonder what it must be like to live in her

brain..................

ruth

August 18, 1999

Laurie,

This is so fascinating. What does your son tell you about his sensory

integration difficulties? I'm curious because my daughter has tactile

problems as well and I wonder what it must be like to live in her

brain..................

ruth

August 18, 1999

Laurie,

This is so fascinating. What does your son tell you about his sensory

integration difficulties? I'm curious because my daughter has tactile

problems as well and I wonder what it must be like to live in her

brain..................

ruth

August 18, 1999

Laurie,

Do you also see how a child with severe motor planning problems and/or severe

sensory integration difficulties can end up with the diagnosis of autism? I

am not surprised when I hear of children wanting to be " antisocial " when they

have sensory deficits. I don''t think I'd want to participate either if I

were stuck in a body that didn't process information quickly or accurately,

that gave me wrong information about where my body was in space, and that

made it SO VERY HARD to keep up with the conversations of others. Sounds

like your boy has had to fight for every little bit of success. Our kiddos

sure do deserve a tremendous amount of respect!!

ruth

August 18, 1999