I think Avery might be autistic? Any advice or comments.

[Guest guest]

Hi Becky,

Have you ever had Avery tested for reflux. My son arched his back and

screamed for the first 3 to 4 mths of life. The Doctors said it was the

reflux. As for some of the other things on the list, I have a nephew

who is autistic. My sister said that seemed to be the only diagnosis

they could give him. ( He was diagnosed with Leigh's as an infant, but

his abnormal tests returned to normal and the revoked the diagnosis.)

He does hand flapping he loves snow globes and candles. I think they

were the only things he would play with. If you consider sitting and

staring, playing. I'm most certainly not a doctor, but I would think if

your son is doing all of these things that his pediatrician would be

concerned also. I know mine would. Also, to you have an Early

Intervention service in the state and county that you live in. They

usually will come to your home and do an evaluation if your child is

under the age of three. If I were you I would get in touch with them

immediately.

Good Luck and let me know what happens.

Barbara

Mom to 5, Max 2 1/2, reflux and speech articulation problems

and Corbin 17mths, possible mito, reflux, asthma, encephalopathy, oral

motor and motor planning dyspraxia and now elevated mucopolysaccharides.

[Guest guest]

Hi Becky.

My son is almost 3 and, for a long time, we were wondering if he was autistic.

He does talk, does make

eye contact, and loves to play with people, so this never really fit in. He did,

however, do the hand

flapping thing (more like clapping), still loves fans and lights and things that

spin, and doesn't do much

fantasy play. He also used to be terrified of strangers. Some doctors

suggested Pervasive Developmental

Disorder about a year ago. However, it is now becoming quite apparent that

is NOT autistic, nor does

he have PDD. Most of the autistic tendencies have resolved themselves (except

the fan obsession), and his

personality has just blossomed over the past 6 months. What was once a

tempermental, clingy, often

irritable child is now a happy, outgoing, funny little boy who laughs all the

time and who has turned into

a social butterfly. I wouldn't have dreamed that he would be like this just a

year ago. That is why I

think doctors wait until age 3 to make a diagnosis, because some of this stuff

is just baby behavior that

can resolve with time.

It does sound to me like much of what you describe falls into the autistic

spectrum, but 21 months is so

young I wouldn't start to worry just yet. If you haven't already, maybe it

would be helpful to get him

into a program for special needs kids. My son has been in a pre-school for kids

with special needs and

it's done wonders.

Don't worry. A lot can change at that age.

Best,

Becky Goodell wrote:

>

>

> Hello all,

> I am sorry to have made so many posts tonight but I haven't responded

> to my email in several days and I am so grateful for all of your help

> I didn't want to leave your comments unrecognized.

> I have seen some of you sign your names and list that your child has

> autism or autistic symptoms or something like that.

> I got curious and looked up some of the early signs of autism and it

> really freaked me out or rather scared me because it was the spitting

> image of Avery.

> First of all, I hope none of you will just accuse me of reading too

> much on the internet!!! That is what I hear a lot of.

> But, there are some pretty unusual things about my special little boy

> that have been bothering me for a long time.

> Here goes ...

> 1.)Avery arched his back incessantly when he was a baby till about 1

> yr. Didn't really like to be held.

> 2.)Avery was extremely collicky as an infant and could only be

> consoled by being swaddled and sometimes not even then.

> 3.) He has always participated in back and forth motions like laying

> on the floor on his back and rubbing his head back and forth on the

> carpet.

> 4.) He has always had a sort of hand flapping thing he does that has

> never gone away. He gets very tense and excited when he does the hand

> flapping and his feet go wild too.

> 5.) He WILL NOT make eye contact. Occassionally he will make contact

> on his terms but if you try to look at him he will do anything to

> avoid looking at you.

> 6.) He cannot stand to be touched by or looked at by strangers and

> sometimes even family.

> 7.) In almost two years of his life he has NEVER pointed to anything.

> Never tried to show me a toy. Never tried to get me to interact with

> him with a toy.

> 8.) He will not look at something if I ask him too. I cannot draw his

> attention to look at anything. I can say, " Avery ... look at Mama or

> look at the 'tubbie or look at the cookie " and absolutely nothing.

> 9.) He does not imitate play. He would never pretend to have a tea

> party or play with a toy vacuum cleaner or anything. He doesn't

> pretend.

> 10.) He seems to be really sharp and smart. It is strange to describe

> it because he doesn't speak except for Mamma and Dadda and he has

> quit that and does't say anything right now. But, he seems to really

> understand the world around him or something. I'm having trouble

> relaying this point.

> 11.) Again, speech is REALLY delayed. He has said a couple of words

> and now he doesn't say them much anymore.

> 12.) He doesn't interact with his sister and looks toward her not at

> her with a look of disgust on his face.

> 13.) Also, when he was a baby and still pretty much to this day he

> will not usually put his arms up to me for me to hold him. Yes, he

> has a lot of problems with hypotonia but now that he has gained

> strength he still feels like a sack of potatoes on my hip.

> 14.) He has just started walking on his tiptoes.

> 15.) He is a very picky eater and this is devastating at mealtime. He

> has no g-tube or anything. He just takes bottles.

> 16.) He will sometimes find his hands extremely fascinating or he

> will take off his shoe, his sock and then hold his foot in front of

> his face while lying on his back and move his foot around and around

> in circles. He seems to find this quite entertaining.

> 17.) My house looks like a Toys 'R Us yard sale. I have massive

> amounts of toys. Avery plays with maybe five toys. He looks at a

> Teletubbies book, he carries around a boy from the Little Tikes

> Dollhouse, he examines a red piece of ribbon over and over, he plays

> with the string off of a yo-yo, and occassionally he will touch his

> Interactive Teletubbie Laa Laa's tummy to see the lights flash. He

> also has a snow globe that he will pick up and set down to make the

> snow go and he will do this repetitively for 30 minutes or more.

> 18.) He has always had a lack of interest in toys. Anything that is a

> string seems to please him. Loves an old measuring tape of mine. When

> he was a baby he played for months with the tag off of a small rattle

> teddy bear.

> 19.) We have had his hearing tested excessively and they say that

> they think he can hear just fine but they would like to see him react

> to the sound behaviourally. His ears seem to be in good shape but he

> won't look at the things when they light up or make noise. He ignores

> them.

> 20.) He ignores everything. Except the TV and teletubbies. And, right

> now he loves my hair. He gets so excited to watch a teletubbies

> program. It isn't " normal " how much he enjoys this show. He seems to

> be obsessed with it. He has to touch my hair constantly. He loves to

> put my pony tail in his face and to tickle and lick my hair. Gross, I

> know but he loves it and laughs when he does this. This is one of the

> only ways he really reacts to me. I mean REALLY reacts to me.

> 21.) He is sensitive to certain touches. He doesn't like his back

> touched and also he doesn't like his face washed. He doesn't like to

> be forced to touch food textures like pudding. If he does it on his

> own sometimes he will do it and sometimes he won't. Tonight we gave

> him a piece of corn on the cobb. His first. He wouldn't touch it and

> screamed when I put his hand on it.

> 22.) He has done the clapping part of patty cake a couple of times. I

> know he can do it. He refuses to do it.

> 23.) He will not respond to his name.

> 24.) He doesn't mind using our hands to clap, using our hands not

> his. He just doesn't want to use his hands I guess.

> 25.) He seems oblivious to me when I am crying. My daughter would

> always come over and pat me if she ever saw me cry. I don't think he

> notices.

> 26.) He has a very high pain tolerance. He has taken many a nasty

> fall because of his lack of muscle tone and he has had a million

> bruises and he doesn't cry much at all when he gets hurt. He will cry

> sometimes but more often than not he just seems to ignore it and go

> on with whatever he is doing.

> 27.) He loves to look at lights in the stores. And also fans. He is

> pacified during shopping trips by looking at the ceiling. He has a

> fan in his bedroom and he loves to watch it go around and around. He

> also went through a phase of only playing with a couple of toys that

> would spin if you pushed the top down or that spun like a top. He

> would watch them forever.

> 28.) He becomes really engrossed in something when he is doing it. He

> really studdies whatever he is holding and it seems like all there is

> at that point in time is him and his book or string or phone book or

> piece of string or ribbon.

> 29.) He loves to lay on his back and kick his feet wildly and can do

> this for an incredible amount of time. It seems like it should take

> so much strength but he just does it.

> 30.) He grinds his teeth all of the time. It drives a lot of his

> therapists crazy.

>

> Okay folks. Now you all think I am crazy or have Munchausen by Proxy

> or that I WANT my son to have autism or that I copied this list from

> somewhere.

> Well, I looked at about 10 lists of the early signs of autism and it

> hit me like a rock because Avery diplayed so many of the symptoms

> that they had listed. Of course he doesn't display them all but I

> think there were enough red flags to start worrying about it.

> Can anyone help me? Where do I go now? What do I do? How do I find a

> doctor that won't think I'm crazy?

> I feel like you people here online are so great to talk to. I'm sure

> you are sick of it by now but I have to say just one more time that I

> am so glad that I found you and appreciate all of your kindness.

> I am scared Avery is autistic. I really think he is. It would explain

> so much. Does anyone know what I am talking about when I say he seems

> really smart so to speak yet he is two and cannot talk?

> Help help help help!

> Please post or email me direct with any comments or advice.

> Sorry to have rambled on for so long but I wanted to get it all out

> in the open about what Avery does.

> Thanks again,

> Becky Goodell

> (Mom to Avery, 21 months, Complex III; , 3 1/2, Not affected?)

>

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

> GET A NEXTCARD VISA, in 30 seconds! Get rates

> as low as 0.0% Intro APR and no hidden fees.

> Apply NOW!

> http://click./1/975/1/_/368657/_/951994146/

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

>

> Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.

[Guest guest]

on 3/2/00 3:48 AM, Becky Goodell wrote:

>

>

> Hello all,

> I am sorry to have made so many posts tonight but I haven't responded

> to my email in several days and I am so grateful for all of your help

> I didn't want to leave your comments unrecognized.

> I have seen some of you sign your names and list that your child has

> autism or autistic symptoms or something like that.

> I got curious and looked up some of the early signs of autism and it

> really freaked me out or rather scared me because it was the spitting

> image of Avery.

> First of all, I hope none of you will just accuse me of reading too

> much on the internet!!! That is what I hear a lot of.

> But, there are some pretty unusual things about my special little boy

> that have been bothering me for a long time.

> Here goes ...

> 1.)Avery arched his back incessantly when he was a baby till about 1

> yr. Didn't really like to be held.

> 2.)Avery was extremely collicky as an infant and could only be

> consoled by being swaddled and sometimes not even then.

> 3.) He has always participated in back and forth motions like laying

> on the floor on his back and rubbing his head back and forth on the

> carpet.

> 4.) He has always had a sort of hand flapping thing he does that has

> never gone away. He gets very tense and excited when he does the hand

> flapping and his feet go wild too.

> 5.) He WILL NOT make eye contact. Occassionally he will make contact

> on his terms but if you try to look at him he will do anything to

> avoid looking at you.

> 6.) He cannot stand to be touched by or looked at by strangers and

> sometimes even family.

> 7.) In almost two years of his life he has NEVER pointed to anything.

> Never tried to show me a toy. Never tried to get me to interact with

> him with a toy.

> 8.) He will not look at something if I ask him too. I cannot draw his

> attention to look at anything. I can say, " Avery ... look at Mama or

> look at the 'tubbie or look at the cookie " and absolutely nothing.

> 9.) He does not imitate play. He would never pretend to have a tea

> party or play with a toy vacuum cleaner or anything. He doesn't

> pretend.

> 10.) He seems to be really sharp and smart. It is strange to describe

> it because he doesn't speak except for Mamma and Dadda and he has

> quit that and does't say anything right now. But, he seems to really

> understand the world around him or something. I'm having trouble

> relaying this point.

> 11.) Again, speech is REALLY delayed. He has said a couple of words

> and now he doesn't say them much anymore.

> 12.) He doesn't interact with his sister and looks toward her not at

> her with a look of disgust on his face.

> 13.) Also, when he was a baby and still pretty much to this day he

> will not usually put his arms up to me for me to hold him. Yes, he

> has a lot of problems with hypotonia but now that he has gained

> strength he still feels like a sack of potatoes on my hip.

> 14.) He has just started walking on his tiptoes.

> 15.) He is a very picky eater and this is devastating at mealtime. He

> has no g-tube or anything. He just takes bottles.

> 16.) He will sometimes find his hands extremely fascinating or he

> will take off his shoe, his sock and then hold his foot in front of

> his face while lying on his back and move his foot around and around

> in circles. He seems to find this quite entertaining.

> 17.) My house looks like a Toys 'R Us yard sale. I have massive

> amounts of toys. Avery plays with maybe five toys. He looks at a

> Teletubbies book, he carries around a boy from the Little Tikes

> Dollhouse, he examines a red piece of ribbon over and over, he plays

> with the string off of a yo-yo, and occassionally he will touch his

> Interactive Teletubbie Laa Laa's tummy to see the lights flash. He

> also has a snow globe that he will pick up and set down to make the

> snow go and he will do this repetitively for 30 minutes or more.

> 18.) He has always had a lack of interest in toys. Anything that is a

> string seems to please him. Loves an old measuring tape of mine. When

> he was a baby he played for months with the tag off of a small rattle

> teddy bear.

> 19.) We have had his hearing tested excessively and they say that

> they think he can hear just fine but they would like to see him react

> to the sound behaviourally. His ears seem to be in good shape but he

> won't look at the things when they light up or make noise. He ignores

> them.

> 20.) He ignores everything. Except the TV and teletubbies. And, right

> now he loves my hair. He gets so excited to watch a teletubbies

> program. It isn't " normal " how much he enjoys this show. He seems to

> be obsessed with it. He has to touch my hair constantly. He loves to

> put my pony tail in his face and to tickle and lick my hair. Gross, I

> know but he loves it and laughs when he does this. This is one of the

> only ways he really reacts to me. I mean REALLY reacts to me.

> 21.) He is sensitive to certain touches. He doesn't like his back

> touched and also he doesn't like his face washed. He doesn't like to

> be forced to touch food textures like pudding. If he does it on his

> own sometimes he will do it and sometimes he won't. Tonight we gave

> him a piece of corn on the cobb. His first. He wouldn't touch it and

> screamed when I put his hand on it.

> 22.) He has done the clapping part of patty cake a couple of times. I

> know he can do it. He refuses to do it.

> 23.) He will not respond to his name.

> 24.) He doesn't mind using our hands to clap, using our hands not

> his. He just doesn't want to use his hands I guess.

> 25.) He seems oblivious to me when I am crying. My daughter would

> always come over and pat me if she ever saw me cry. I don't think he

> notices.

> 26.) He has a very high pain tolerance. He has taken many a nasty

> fall because of his lack of muscle tone and he has had a million

> bruises and he doesn't cry much at all when he gets hurt. He will cry

> sometimes but more often than not he just seems to ignore it and go

> on with whatever he is doing.

> 27.) He loves to look at lights in the stores. And also fans. He is

> pacified during shopping trips by looking at the ceiling. He has a

> fan in his bedroom and he loves to watch it go around and around. He

> also went through a phase of only playing with a couple of toys that

> would spin if you pushed the top down or that spun like a top. He

> would watch them forever.

> 28.) He becomes really engrossed in something when he is doing it. He

> really studdies whatever he is holding and it seems like all there is

> at that point in time is him and his book or string or phone book or

> piece of string or ribbon.

> 29.) He loves to lay on his back and kick his feet wildly and can do

> this for an incredible amount of time. It seems like it should take

> so much strength but he just does it.

> 30.) He grinds his teeth all of the time. It drives a lot of his

> therapists crazy.

>

> Okay folks. Now you all think I am crazy or have Munchausen by Proxy

> or that I WANT my son to have autism or that I copied this list from

> somewhere.

> Well, I looked at about 10 lists of the early signs of autism and it

> hit me like a rock because Avery diplayed so many of the symptoms

> that they had listed. Of course he doesn't display them all but I

> think there were enough red flags to start worrying about it.

> Can anyone help me? Where do I go now? What do I do? How do I find a

> doctor that won't think I'm crazy?

> I feel like you people here online are so great to talk to. I'm sure

> you are sick of it by now but I have to say just one more time that I

> am so glad that I found you and appreciate all of your kindness.

> I am scared Avery is autistic. I really think he is. It would explain

> so much. Does anyone know what I am talking about when I say he seems

> really smart so to speak yet he is two and cannot talk?

> Help help help help!

> Please post or email me direct with any comments or advice.

> Sorry to have rambled on for so long but I wanted to get it all out

> in the open about what Avery does.

> Thanks again,

> Becky Goodell

> (Mom to Avery, 21 months, Complex III; , 3 1/2, Not affected?)

>

>

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

> GET A NEXTCARD VISA, in 30 seconds! Get rates

> as low as 0.0% Intro APR and no hidden fees.

> Apply NOW!

> http://click./1/975/1/_/368657/_/951994146/

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

>

> Brought to you by www.imdn.org - an on-line support group for those affected

> by mitochondrial disease.

>

>

Becky, sure sound to me like you son has a lot of the autistic traits that

has. Although we have used the diagnosis of autism for school

because it described her behaviors and needs the best - the mito has caused

other issues, and I believe the autistic traits. The point is that the

interventions for autism work for kids that have autistic traits. Whether

or not you get a diagnosis for this or not, it sounds to me like you need to

makes sure that you are taking advantage of every early intervention

opportunity available to you. The younger the better. I guess my belief is

that regardless of the cause - the autistic traits are there and need to be

addressed. You are not nuts. Good luck! ML

--

Lou

mom to ,14 Complex I & III (our happy,little entertainer); Jeff 16 and

Greg 10 (typical active boys)

[Guest guest]

Thanks for the flag - what was 's behavior like before and after coming

off meds? Did she get physically ill? I know that certain types of mito are

not conducive to the diet but that is all I know.

n

Re: I think Avery might be autistic? Any advice or comments.

>

>

>

>

> n Howe wrote:

>

> >

> >

> > Becky, I have tears in my eyes after reading your email. I am literally

in

> > the midst of starting to think that my son is showing signs of

> > autism. What is so confusing to us is that the new behaviors coincided

> > exactly with taking him off seizure meds (he is on the ketogenic diet).

Here

> > is what we are seeing; hardly speaking at all anymore (he never spoke

much

> > due to severe processing/articulation issues etc., not making much eye

> > contact, wants to do nothing but watch TV (he can watch Dumbo 6 times in

one

> > day), playing in very odd manner with toys repetitive and

non-meaningful,

> > watching his hands or fingers for long periods, not responding at all

when I

> > speak to him , temper tantrums.

>

> n,

> Your note to Becky sent off such a flag in me that I have to respond.

was on the ketogenic diet

> for almost two years and was a " clinical " success because her seizures

went down, but the real life

> impact was horrible for her body. Thank God, we had the intervention of a

Dr. in NJ that took a few labs

> and realized that Jess was literally starving to death on the diet due to

her inability to metabolize the

> fat. We got her off the diet and she started to come back to us. I am NOT

down on the diet, but I believe

> with the other complications in our kids systems... unless the meds were

totally ineffective, you may

> want to REALLY question the diet... if you are using regular fats, butter,

cream etc... see if they want

> to try the MCT oil... I know that nutrition plays an incredible part in

jess health and I just heard your

> quote " coincided exactly with taking him off seizure meds ( he is on the

ketogenic diet) " and want you

> to know that as neat as the concept sound, and as diligent as you provide

for him (my husband and i

> actually joined six parents and flew Milicent to CA) to spend ten

hours reviewing the diet,

> utilizing a software program that made the diet and culinary challenge

easier... but it was NOT a good

> thing for Jess. Unfortunately, I do not have a definate diagnosis...We are

with CHOC, and Dr.Stein

> believes with all his knowledge that Jess has a mitochondrial disease...

just nothing is confirmed in all

> the tests we have taken so far. Good Luck and don't hesitate to LISTEN to

your gut... I let Jess stay on

> the diet to the point that I may have lost by trying to do what looked to

be such a good thing... sharon

> c

>

>

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

> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0%

> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> http://click./1/937/1/_/368657/_/952022592/

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

>

> Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

[Guest guest]

More questions about Jess...when you say she was starving due to inability

to metabolize fats, was she actually losing weight? is in good health

and is at a good weight. On the diet since 9/13 but just completely came off

all the meds on Feb. 7th. What labs did the doc in NJ run on Jess? I'm

seeing his mito doc on Monday to ask what labs we should all have done...

n

Re: I think Avery might be autistic? Any advice or comments.

>

>

>

>

> n Howe wrote:

>

> >

> >

> > Becky, I have tears in my eyes after reading your email. I am literally

in

> > the midst of starting to think that my son is showing signs of

> > autism. What is so confusing to us is that the new behaviors coincided

> > exactly with taking him off seizure meds (he is on the ketogenic diet).

Here

> > is what we are seeing; hardly speaking at all anymore (he never spoke

much

> > due to severe processing/articulation issues etc., not making much eye

> > contact, wants to do nothing but watch TV (he can watch Dumbo 6 times in

one

> > day), playing in very odd manner with toys repetitive and

non-meaningful,

> > watching his hands or fingers for long periods, not responding at all

when I

> > speak to him , temper tantrums.

>

> n,

> Your note to Becky sent off such a flag in me that I have to respond.

was on the ketogenic diet

> for almost two years and was a " clinical " success because her seizures

went down, but the real life

> impact was horrible for her body. Thank God, we had the intervention of a

Dr. in NJ that took a few labs

> and realized that Jess was literally starving to death on the diet due to

her inability to metabolize the

> fat. We got her off the diet and she started to come back to us. I am NOT

down on the diet, but I believe

> with the other complications in our kids systems... unless the meds were

totally ineffective, you may

> want to REALLY question the diet... if you are using regular fats, butter,

cream etc... see if they want

> to try the MCT oil... I know that nutrition plays an incredible part in

jess health and I just heard your

> quote " coincided exactly with taking him off seizure meds ( he is on the

ketogenic diet) " and want you

> to know that as neat as the concept sound, and as diligent as you provide

for him (my husband and i

> actually joined six parents and flew Milicent to CA) to spend ten

hours reviewing the diet,

> utilizing a software program that made the diet and culinary challenge

easier... but it was NOT a good

> thing for Jess. Unfortunately, I do not have a definate diagnosis...We are

with CHOC, and Dr.Stein

> believes with all his knowledge that Jess has a mitochondrial disease...

just nothing is confirmed in all

> the tests we have taken so far. Good Luck and don't hesitate to LISTEN to

your gut... I let Jess stay on

> the diet to the point that I may have lost by trying to do what looked to

be such a good thing... sharon

> c

>

>

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

> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0%

> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> http://click./1/937/1/_/368657/_/952022592/

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

>

> Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

[Guest guest]

Becky,

Whether or not your child is autistic, you might want to try some of the

interventions used to treat autism. Armour thyroid, coenzyme B6, and

taurine helped my child who had something similar to ADD. (I had an amino

acid assay before starting the taurine.) It is all part of a spectrum of

behavior. Much seems to be related, both in treatment and symptoms.

Something that I think is very important is the Armour or natural thyroid.

Even though my daughter's blood tests were normal, the thyroid made a huge

difference in her behavior. Many of the autistic kids have benefited

greatly from the natural thyroid too. Trouble is, not many have tried it

because of the problem with diagnosis -- it cannot be by the blood test in

children. It must be by symptoms. I would STRONGLY suspect that anyone

with mitochondrial disease would also do better with some thyroid. I'd

contact the Foundation. They and some of their doctors are the only

ones that can help with this in children. Other doctors will

discourage or browbeat you into not considering this.

Polly

[Guest guest]

Becky,

I'm afraid I made you think that Avery might have autism. From my post

to you. Now reading your post after looking up some info on autism , I

understand your concern. I am curious how he got a mito diagnosis before

autism or whatever. mayk end up being along with mito to get an IEP or uknder

2 an IFSP.How did you do that? I lurk or delete alot but pprobably answered

you because it soussnded so familiar. Information is power in my opinion.

If the shoe fits, you should seek out a diagnosis and get Avery into early

intervention ASAP( which the system is a nightmare-so stay on the list for

support for that wwould be worth your time.

So let me explain my son at Avery's age. Serious ear infection-no

antibiotic helped. Had 25 w ords @ 15 months. Got ear tubes and wouldn't

eat/sleep/make eye contact/ would not interact and appeared

deaf...ect..ect..ect..Pediatarician did not respond to my concerns and

finally I he got sent for a developmental, hearing , speech and the state of

PA made a MHK/MR representative go to one of them and we got minimal services

at the age of 2 years and 2 months. But he did not have a diagnosis until

another 6 months or so and it was only by a 3 hour meeting and looking at his

behaviors.

Any way to make a long story short......We think that the cause of his

autism is from

a mito disorder and his consistent high levels of lactate acid, liver and

glucose abnormalities. There is not this info in the autism " world "

however a very few metabolic

Doctors are lookin g at this theory/

Our specialist is a developmental pediatrician and a geneticist all in

one person. Go to a teaching hospital for an evaluation. I could haave had

him started earlier if our pediatrician did not hold us up.

Mito cocktail is like a miracle when it comes to eating but has not

helped his pperserverations(obessive/compulsive behaviors) Theory is that he

is almost 10 and these bbehaviors are so much apart of him What would have

happened if we knew this at 2 years old or when he originally regressed at

15 months.

There is so many theories of the cause of autism. But it still remains a

lifetime disabiltly with no known cause or cure. Examples are DPT and MMR

vaccine's, yeast infection, genetics, well Becky, now mito, There again is so

many opinions and nobody knows.

My son regresses with illness and vaccinations. My friends kids with

autism do not seem to do that. That is why I think I am close to figuring

out the uknknown cause of autism in my son Bart as he seems to fit into this

mito list of support better than the autism

support. But if Avery get this diagnosis you will need to understand the

special ed laws and bbecome an advocate for him. I think already you will be.

Also, there is an epidemic of autism in this country. Do not tread

anthing befror the 1990's!!!! & years ago when Bart was diagnosed the books

said the genetic odds were 1 in 10,00-. Now it is one in 500!! Whoa!!

MOre prevalant that Down's syndrome is the newest infor coming out. Reseach

was halted until the last say 5 years becakuse they ukse to blame the Mother

and if this were me they would dhave institualized me and take me away from

my family.

Keep in touch Becky

And I would like to hear how Avery got the mito diagnoses.

Kathy Foley

[Guest guest]

n, This is the address for an article written by Dr. Kane, the

woman that helped me pull back after our years on the keto diet.

I want to include it because her help was so significant to us...

although we were in California and she was in New Jersey... she was

truly God sent to help us at a real critical time! !!The testing she did

was just a comprehensive blood test processed at Carbon Based

Corporation which gave us a direct window into how to supplement her

system... the results were remarkable, and her support helped me get

Jess immediately off the diet and start feeding her in a manner that she

could tolerate. At the point of testing, Jess was high in albumin, anion

gap, calcium, hematocrit, iron, mcv, monocyte count, monocytes,

phosphorus, potassium, protein (total), sgot, sgpt... and LOW in

alkaline phosphastase, creatinine, eosinophi count, lymphocytes,

neutrophil count, neutrophils, sodium/potassium ratio, and WBC. One

interesting thing is that from her perspective, the highs and lows in

some labs are not adequate measures for our children and I believe she

had much more confidence in the Carbon Based Corp... (for me the only

thing that mattered is that she did what Loma and UCLA could not

do... she helped get Jess back a strong enough life force to keep

going...) for my money, that was proof enough:-) !

This is well worth reading for anyone struggling with mito as well as

those addressing the keto diet...

http://www.geocities.com/HotSprings/3995/health/lorenzo.htm

ps) marian... having to find this for you has been wonderful... I

believe I am going to have our " out of pocket " doc order this test for

me again and do a comparison... this is from 5/97 and as all of you...

we've been around the world since then, but I wonder if I might not be

able to revisit our nutritional window and get some more wonderful

guidance from an update. at the time, dr. Kane placed Jess on

lactoferrin, zinc sulfate, magnesium carbonate, zinc gluconate, oral

electrolyte solution, acetic acid and zinc carbonate... we also added

some specific foods to strengthen the biochemistry of jess' body. Since

then, Jess mito doc has discontinued all of these... and she is doing

quite well... but I'd sure like to see the improvement in the labs and

know that there's nothing else we can be doing to help her. Sorry this

is so long, but I hope it helps.

[Guest guest]

>What does thyroid, taurine and coenzyme b6 do for autistic kids?

The comments I've heard about the thyroid, B6, and taurine, are just that

they are generally helpful. Second hand, I've heard of two parents saying

that the thyroid was responsible for bringing their kid out of autism. So it

can make a dramatic difference. You might inquire at

autism-thyroidonelist.

99% of the time, you are not going to get a diagnosis of low thyroid for a

child from a blood test. They have to be diagnosed by symptoms. One of the

primary markers for low thyroid in a kid is poor muscle tone. Other common

symptoms are wetting the bed, eczema, certain facial features. With adults

you have intolerance to heat or cold, MS, diabetes, dysbiosis ... With my

child, her low thyroid manifested itself as precocious puberty, depression,

some fatigue, and inability to focus at school.

I'm totally shocked that natural thyroid (Armour) or a mixture of T3 and T4

thyroid is not considered part of the treatment for mitochondria disease.

It is certainly considered important for fibromyalgia, which some consider a

mitochondrial dysfunction because of the high lactic acid levels. Thyroid

increases the production of CO2. CO2 is made by the mitochondria. CO2

inhibits the production of lactic acid. According to Dr. Lowe, half the

people with fibromyalgia need thyroid. Of those that need it, many need

much higher doses than is normally given. .

Okay. Back on subject. Autistic kids. B6 with magnesium is probably the

oldest known intervention for autism. Only recently have I seen suggestions

to use the coenzyme B6 instead of plain B6. Some people cannot convert B6

into the coenzyme form. A very high percent of those with liver cirrhosis

cannot. Yeast overgrowth with interfere with this conversion, and will also

deplete the body of B6, and will interfere with the use of B6.

Taurine is one of the sulfur amino acids. The sulfur chain goes like this.

Methionine converts to homocysteine which converts to cysteine, which

converts to taurine which converts to sulfite which converts to sulfate.

With the majority of kids with Autism, there is a problem someplace along

this chain. (Perhaps due to mercury poisoning.) Some will do better with

taurine, and with others they cannot tolerate the taurine. You need B6 to

make these conversions. Also molybdenum is needed to make the conversion

from sulfite to sulfate. As a general source of sulfur, MSM is highly

recommended. The intestines lose sulfate when they are inflamed. They need

the sulfate to prevent allergies and leaky gut. If you try the MSM, start

very slowly. Some moms must start with the Epsom salt baths (magnesium

sulfate) before they graduate to the MSM sulfur. MSM will reduce the

molybdenum levels, so make sure to give a small amount of molybdenum with

it. Dr. Mercola suggests you start the MSM later in his treatment protocol

for mercury poisoning. By the way, mercury can cross the placenta. So even

though none of your kids have mercury fillings, you should have them tested

for mercury poisoning. Just about any toxin can damage the mitochondria,

including too much unsaturated oils.

Polly

[Guest guest]

Polly,

My daughter was first dignosed withaustism at the age of 2 and then

later with complex lll when my son had the same delays. But no one ever told

me that there were vitamins or drugs to help the systems for austistic kids.

I knew there were meds for behavioral problem and about Secretin. I feel so

confused. My daughter is almost 6 and my son is almost 4. I feel that maybe

I haven't done enough , we just got a computer so maybe now I will get on

track. Is there any web sites you think will be helpful.

Vange

I think Avery might be autistic? Any advice or comments.

>

>

>

> >What does thyroid, taurine and coenzyme b6 do for autistic kids?

>

>

> The comments I've heard about the thyroid, B6, and taurine, are just that

> they are generally helpful. Second hand, I've heard of two parents saying

> that the thyroid was responsible for bringing their kid out of autism. So

it

> can make a dramatic difference. You might inquire at

> autism-thyroidonelist.

>

> 99% of the time, you are not going to get a diagnosis of low thyroid for a

> child from a blood test. They have to be diagnosed by symptoms. One of

the

> primary markers for low thyroid in a kid is poor muscle tone. Other

common

> symptoms are wetting the bed, eczema, certain facial features. With

adults

> you have intolerance to heat or cold, MS, diabetes, dysbiosis ... With my

> child, her low thyroid manifested itself as precocious puberty,

depression,

> some fatigue, and inability to focus at school.

>

> I'm totally shocked that natural thyroid (Armour) or a mixture of T3 and

T4

> thyroid is not considered part of the treatment for mitochondria disease.

> It is certainly considered important for fibromyalgia, which some consider

a

> mitochondrial dysfunction because of the high lactic acid levels. Thyroid

> increases the production of CO2. CO2 is made by the mitochondria. CO2

> inhibits the production of lactic acid. According to Dr. Lowe, half the

> people with fibromyalgia need thyroid. Of those that need it, many need

> much higher doses than is normally given. .

>

> Okay. Back on subject. Autistic kids. B6 with magnesium is probably the

> oldest known intervention for autism. Only recently have I seen

suggestions

> to use the coenzyme B6 instead of plain B6. Some people cannot convert B6

> into the coenzyme form. A very high percent of those with liver cirrhosis

> cannot. Yeast overgrowth with interfere with this conversion, and will

also

> deplete the body of B6, and will interfere with the use of B6.

>

> Taurine is one of the sulfur amino acids. The sulfur chain goes like

this.

> Methionine converts to homocysteine which converts to cysteine, which

> converts to taurine which converts to sulfite which converts to sulfate.

> With the majority of kids with Autism, there is a problem someplace along

> this chain. (Perhaps due to mercury poisoning.) Some will do better with

> taurine, and with others they cannot tolerate the taurine. You need B6 to

> make these conversions. Also molybdenum is needed to make the conversion

> from sulfite to sulfate. As a general source of sulfur, MSM is highly

> recommended. The intestines lose sulfate when they are inflamed. They

need

> the sulfate to prevent allergies and leaky gut. If you try the MSM, start

> very slowly. Some moms must start with the Epsom salt baths (magnesium

> sulfate) before they graduate to the MSM sulfur. MSM will reduce the

> molybdenum levels, so make sure to give a small amount of molybdenum with

> it. Dr. Mercola suggests you start the MSM later in his treatment

protocol

> for mercury poisoning. By the way, mercury can cross the placenta. So

even

> though none of your kids have mercury fillings, you should have them

tested

> for mercury poisoning. Just about any toxin can damage the mitochondria,

> including too much unsaturated oils.

>

> Polly

>

>

>

>

>

>

>

>

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

> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0%

> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> http://click./1/937/1/_/368657/_/952306330/

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

>

> Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

[Guest guest]

Is there any web sites you think will be helpful? Vange

There certainly are a lot of websites that deal with autism.

www.mercola.com , www.gnd.org, www.oneworld.org/autism_uk/,

http://members.spree.com/autism/, www.autism.com/ari/,

www.AutismNDI@..., www.secretin.com, www.megson.com or sign up for

Bernard Rimland, Ph.D.’s newsletter. Autism Research Institute, 4182

Avenue, San Diego, CA 92116 Get PhD book Special Diets for

Special Kids to help you try a diet that has helped many. www.NIDS.net

www.kirkmanlabs.com

Dr. Shaw has a new book out on the subject. (Visit his website at

www.autism.com/shaw-yeast/ or www.greatplainslaboratory.com or phone

to order the book.)

http://personal.atl.bellsouth.net/atl/s/o/sojmed/sara's-diet.html

http://osiris.sunderland.ac.uk/autism/aru.htm www.909shot.com

I like Willissonelist for a list. But I hear the one at St. s is

very good.

Gosh, there is so much to consider. The first thing is probably to get one

of the DAN doctors. I like Kane's idea of first normalizing the pH and

electrolytes before doing anything else. Gluten free / Casein free diet. I

don't know if the DAN doctors are yet aware of the importance of the thyroid

aspect. The people at www.brodabarnes.com are amoung the few who could help

with the hormones. Slowly add retinol A, coenzyme B6, magnesium, thyroid,

folic acid, TMG and coQ10. A special from of B12, hydroxycobalamin, should

probably help too, because it helps people with CFIDS. Then check stomach

pH, try Epsom salt baths, and slowly add MSM and molybdenum. Then head for

the more exotic treatments like NAET, Essiac tea, homeopathics. In general,

oils are to be added later, otherwise there might be a problem with the EFAs

and seizures. This may make it difficult to follow Dr. Megson's suggestion

of using fish oil for its retinol vitamin A content. I think a better

solution is to get the retinol A from another source. You might check with

Allergy Research about their children's multiple vitamin. It is usually

tolerated by autistic children, and it contains the retinol form of vitamin

A.

Polly

[Guest guest]

Is there any web sites you think will be helpful? Vange

There certainly are a lot of websites that deal with autism.

www.mercola.com , www.gnd.org, www.oneworld.org/autism_uk/,

http://members.spree.com/autism/, www.autism.com/ari/,

www.AutismNDI@..., www.secretin.com, www.megson.com or sign up for

Bernard Rimland, Ph.D.’s newsletter. Autism Research Institute, 4182

Avenue, San Diego, CA 92116 Get PhD book Special Diets for

Special Kids to help you try a diet that has helped many. www.NIDS.net

www.kirkmanlabs.com

Dr. Shaw has a new book out on the subject. (Visit his website at

www.autism.com/shaw-yeast/ or www.greatplainslaboratory.com or phone

to order the book.)

http://personal.atl.bellsouth.net/atl/s/o/sojmed/sara's-diet.html

http://osiris.sunderland.ac.uk/autism/aru.htm www.909shot.com

I like Willissonelist for a list. But I hear the one at St. s is

very good.

Gosh, there is so much to consider. The first thing is probably to get one

of the DAN doctors. I like Kane's idea of first normalizing the pH and

electrolytes before doing anything else. Gluten free / Casein free diet. I

don't know if the DAN doctors are yet aware of the importance of the thyroid

aspect. The people at www.brodabarnes.com are amoung the few who could help

with the hormones. Slowly add retinol A, coenzyme B6, magnesium, thyroid,

folic acid, TMG and coQ10. A special from of B12, hydroxycobalamin, should

probably help too, because it helps people with CFIDS. Then check stomach

pH, try Epsom salt baths, and slowly add MSM and molybdenum. Then head for

the more exotic treatments like NAET, Essiac tea, homeopathics. In general,

oils are to be added later, otherwise there might be a problem with the EFAs

and seizures. This may make it difficult to follow Dr. Megson's suggestion

of using fish oil for its retinol vitamin A content. I think a better

solution is to get the retinol A from another source. You might check with

Allergy Research about their children's multiple vitamin. It is usually

tolerated by autistic children, and it contains the retinol form of vitamin

A.

Polly

[Guest guest]

Polly and Becky:

Kirkman now has a cod liver oil without palmitate A in it. Just

a note Polly, there is a lot of discussion on the secretin-discussionegroups

list about Megson's Vit A theory. The reason being is that all CLO

has palmitate A in it. And she based her findings using CLO w/palmitate

A in it. She strongly urges parents not to use palmitate A as autistics

can't metabolize them well. But, she was using it without realizing

it. So, obviously, none of this makes sense.

She and Kirkman Company (kirkman@...) have just formulated

a pure Vit A product that just came on the market. I haven't used

it yet, but it sounds okay.

My son really did well on CLO for about 10 days then he got weird.

Spinning and silliness. So we stopped and haven't used anything again.

HOwever, his vestibular system improved greatly on it. As did eye

contact and speech. So, I know there is somethign of value to using

Vit A, its just finding the right source. Any ideas or comments to

add are appreciated.

I must just make a quick note regarding the similarities between the

mito and autistic kids. Its almost shocking to me. I read so

many things on this list that are on the biological autism lists.

I wonder how many autistic kids have mito disfunction and don't know it.

Kind of scarey. The other thing I'm concerned about is that if Clayton

does have mito disfunction, which so far the labs are pointing to, how

do I balance out mito and autism biological treatments? Polly,

you seem to be doing this. Are there others? And will you be

able to help me? Are there doctors that can help or nutritionists?

Beth Mortl

Dale Goudey wrote:

Is there any web sites you think will be helpful? Vange

There certainly are a lot of websites that deal with autism.

www.mercola.com , www.gnd.org, www.oneworld.org/autism_uk/,

http://members.spree.com/autism/,

www.autism.com/ari/,

www.AutismNDI@..., www.secretin.com, www.megson.com or

sign up for

Bernard Rimland, Ph.D.’s newsletter. Autism Research Institute,

4182

Avenue, San Diego, CA 92116 Get PhD book Special

Diets for

Special Kids to help you try a diet that has helped many. www.NIDS.net

www.kirkmanlabs.com

Dr. Shaw has a new book out on the subject. (Visit his website at

www.autism.com/shaw-yeast/ or www.greatplainslaboratory.com or

phone

to order the book.)

http://personal.atl.bellsouth.net/atl/s/o/sojmed/sara's-diet.html

http://osiris.sunderland.ac.uk/autism/aru.htm

www.909shot.com

I like Willissonelist for a list. But I hear the one

at St. s is

very good.

Gosh, there is so much to consider. The first thing is probably

to get one

of the DAN doctors. I like Kane's idea of first normalizing

the pH and

electrolytes before doing anything else. Gluten free / Casein free

diet. I

don't know if the DAN doctors are yet aware of the importance of

the thyroid

aspect. The people at www.brodabarnes.com are amoung the

few who could help

with the hormones. Slowly add retinol A, coenzyme B6, magnesium,

thyroid,

folic acid, TMG and coQ10. A special from of B12, hydroxycobalamin,

should

probably help too, because it helps people with CFIDS. Then

check stomach

pH, try Epsom salt baths, and slowly add MSM and molybdenum.

Then head for

the more exotic treatments like NAET, Essiac tea, homeopathics.

In general,

oils are to be added later, otherwise there might be a problem

with the EFAs

and seizures. This may make it difficult to follow Dr. Megson's

suggestion

of using fish oil for its retinol vitamin A content. I think

a better

solution is to get the retinol A from another source.

You might check with

Allergy Research about their children's multiple vitamin.

It is usually

tolerated by autistic children, and it contains the retinol form

of vitamin

A.

Polly

Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

[Guest guest]

Vange:

I urge you to join the secretin-discussionegroups list. You

will find vital information on biologically treating autism. Everything

is science based with abstracts and studies backing up opinions.

I actually think there is a big connection going on here with mito and

autism.

As I am new to this list, I see this, but maybe this is old news for

others. Sorry,

Beth

DAVID BERNOW wrote:

Polly,

My daughter was first dignosed withaustism at

the age of 2 and then

later with complex lll when my son had the same delays. But no

one ever told

me that there were vitamins or drugs to help the systems for austistic

kids.

I knew there were meds for behavioral problem and about Secretin.

I feel so

confused. My daughter is almost 6 and my son is almost 4. I feel

that maybe

I haven't done enough , we just got a computer so maybe now I will

get on

track. Is there any web sites you think will be helpful.

Vange

I think Avery might be autistic? Any advice or

comments.

>

>

>

> >What does thyroid, taurine and coenzyme b6 do for autistic kids?

>

>

> The comments I've heard about the thyroid, B6, and taurine, are

just that

> they are generally helpful. Second hand, I've heard of

two parents saying

> that the thyroid was responsible for bringing their kid out of

autism. So

it

> can make a dramatic difference. You might inquire at

> autism-thyroidonelist.

>

> 99% of the time, you are not going to get a diagnosis of low

thyroid for a

> child from a blood test. They have to be diagnosed by symptoms.

One of

the

> primary markers for low thyroid in a kid is poor muscle tone.

Other

common

> symptoms are wetting the bed, eczema, certain facial features.

With

adults

> you have intolerance to heat or cold, MS, diabetes, dysbiosis

.... With my

> child, her low thyroid manifested itself as precocious puberty,

depression,

> some fatigue, and inability to focus at school.

>

> I'm totally shocked that natural thyroid (Armour) or a mixture

of T3 and

T4

> thyroid is not considered part of the treatment for mitochondria

disease.

> It is certainly considered important for fibromyalgia, which

some consider

a

> mitochondrial dysfunction because of the high lactic acid levels.

Thyroid

> increases the production of CO2. CO2 is made by the mitochondria.

CO2

> inhibits the production of lactic acid. According to Dr.

Lowe, half the

> people with fibromyalgia need thyroid. Of those that need

it, many need

> much higher doses than is normally given. .

>

> Okay. Back on subject. Autistic kids. B6 with

magnesium is probably the

> oldest known intervention for autism. Only recently have

I seen

suggestions

> to use the coenzyme B6 instead of plain B6. Some people

cannot convert B6

> into the coenzyme form. A very high percent of those with

liver cirrhosis

> cannot. Yeast overgrowth with interfere with this conversion,

and will

also

> deplete the body of B6, and will interfere with the use of B6.

>

> Taurine is one of the sulfur amino acids. The sulfur chain

goes like

this.

> Methionine converts to homocysteine which converts to cysteine,

which

> converts to taurine which converts to sulfite which converts

to sulfate.

> With the majority of kids with Autism, there is a problem someplace

along

> this chain. (Perhaps due to mercury poisoning.) Some will

do better with

> taurine, and with others they cannot tolerate the taurine.

You need B6 to

> make these conversions. Also molybdenum is needed to make

the conversion

> from sulfite to sulfate. As a general source of sulfur,

MSM is highly

> recommended. The intestines lose sulfate when they are

inflamed. They

need

> the sulfate to prevent allergies and leaky gut. If you

try the MSM, start

> very slowly. Some moms must start with the Epsom salt baths

(magnesium

> sulfate) before they graduate to the MSM sulfur. MSM will

reduce the

> molybdenum levels, so make sure to give a small amount of molybdenum

with

> it. Dr. Mercola suggests you start the MSM later in his

treatment

protocol

> for mercury poisoning. By the way, mercury can cross the

placenta. So

even

> though none of your kids have mercury fillings, you should have

them

tested

> for mercury poisoning. Just about any toxin can damage

the mitochondria,

> including too much unsaturated oils.

>

> Polly

>

>

>

>

>

>

>

>

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

> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as

0.0%

> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> http://click./1/937/1/_/368657/_/952306330/

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

>

> Brought to you by www.imdn.org - an on-line support group for

those

affected by mitochondrial disease.

>

Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

[Guest guest]

Dale Goudey wrote:

> I'm totally shocked that natural thyroid (Armour) or a mixture of T3 and T4

> thyroid is not considered part of the treatment for mitochondria disease.

Thyroid supplementation can make mito symptoms worse, because synthroid in any

excess uncouples oxidative

phosphorilation, and that's where most of us have a defect anyway. It is a very

tricky medicine to use

with mito and must be monitored closely. I know of at least one woman that

actually got a diagnosis of

Mito when she was treated for hypothyroidism and became very weak and fatigued.

This was the tip off for

her doctors to get a biopsy and her dx of mito was confirmed.

We have been cautioned repeatedly with the use of synthroid or synthetic thyroid

hormone in my daughter,

and she is clinically deficient. It is most certainly a double edged sword, in

that mitochondrial

function can be definately impacted from the lack of thyroid, but it can also be

made worse from

supplementation.

Jeannnine

[Guest guest]

In a message dated 3/5/00 5:33:45 PM Pacific Standard Time,

goudey@... writes:

<< certain facial features. >>

This one is interesting. I was wondering what facial features they are

talking about.

[Guest guest]

Barbara,

I don't know much about reflux. Avery has never had this addressed but I

certainly think it might be something that is affecting him.

It was incredible how much he arched his back. I took him to the dr. so many

times for this. No one could figure out why he did this.

He is already in Early Intervention. I am not so pleased with how the therapists

have reacted to my " theory " of Avery possibly being on the autistic spectrum.

It angers me.

They tell me over and over again that they won't check off things on their list

that Avery is supposed to do until they consider that he has mastered it ...

doing it anywhere and anytime for anyone. I have understood this important

distinction from doing something once to doing it a million times.

BUT, now the tables are turned. I say he doesn't have good eye contact and they

respond ... well he looked at me really well last week and a couple of weeks

ago, remember that really good session?

YES, but he doesn't by any means have eye contact mastered.

I say, he doesn't play with toys appropriately and they convey the point that

well remember that one time he did such and such. I've seen him play okay

before.

YES, so have I a couple of times too but that is not MASTERY!!!

Oh well. I am going it alone. No support. We'll see what Avery's pediatrician

says on Friday.

Wish me luck and say a prayer.

Thank you,

Becky

(Mom to Avery, Complex III.)

At 09:43 PM 1/31/2000 -0500, you wrote:

>

>

>Hi Becky,

>Have you ever had Avery tested for reflux. My son arched his back and

>screamed for the first 3 to 4 mths of life. The Doctors said it was the

>reflux. As for some of the other things on the list, I have a nephew

>who is autistic. My sister said that seemed to be the only diagnosis

>they could give him. ( He was diagnosed with Leigh's as an infant, but

>his abnormal tests returned to normal and the revoked the diagnosis.)

>He does hand flapping he loves snow globes and candles. I think they

>were the only things he would play with. If you consider sitting and

>staring, playing. I'm most certainly not a doctor, but I would think if

>your son is doing all of these things that his pediatrician would be

>concerned also. I know mine would. Also, to you have an Early

>Intervention service in the state and county that you live in. They

>usually will come to your home and do an evaluation if your child is

>under the age of three. If I were you I would get in touch with them

>immediately.

>

>Good Luck and let me know what happens.

>

>Barbara

>Mom to 5, Max 2 1/2, reflux and speech articulation problems

>and Corbin 17mths, possible mito, reflux, asthma, encephalopathy, oral

>motor and motor planning dyspraxia and now elevated mucopolysaccharides.

>

>

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

>GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0%

>Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

>http://click./1/937/1/_/368657/_/952054154/

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

>

>Brought to you by www.imdn.org - an on-line support group for those affected by

mitochondrial disease.

>

>

[Guest guest]

Kathy,

Thanks so much to your response to this question I posed about Avery.

I so much appreciate the input.

Avery is in early intervention but as I've stated in an earlier post his

therapists think I am crazy.

Oh yeah, one more thing... they always tell me over and over and over that I am

my child's best expert. Yeah right!!! They think I am stupid and that I'm

paranoid. They don't consider me an expert in anything except for maybe surfing

the internet! LOL!

Anyhow, I appreciate the advice about the dr. Hopefully Avery's pediatrician

will help on Friday. He is a very kind man. He was my pediatrician and I have a

lot of respect for his compassion.

But, we'll see now what happens on Friday.

Thanks again,

Becky

At 06:57 AM 3/2/2000 EST, you wrote:

>From: KCorley309@...

>

>In a message dated 03/02/2000 2:52:58 AM Pacific Standard Time,

>beckyg@... writes:

>

>> Can anyone help me? Where do I go now? What do I do? How do I find a

>> doctor that won't think I'm crazy?

>

>I think many doctors reserve judgement until age three because they are

>unwilling to label a child with autism until they are certain. I think it is

>a mistake to ignore it until then, because there are some interventions that

>will make a difference (not cure but address some of the aspects) in the

>child's life that should begin before the age of three. My only two ideas

>are this . . . is your child already in early intervention? If not, see if

>you can find someplace in your town where they offer special services to

>young children. Many times, they don't expect all the little ones to have

>definitive diagnoses this young. went in at 4 months just on the basis

>of his failure to thrive. It sounds as though there is enough present that if

>you share your concerns, they will be willing to help you.

>

>The other idea is that sometimes it takes changing docs. If you have

>addressed all of this with your doctor . . . take your list and read it! . .

>. and you are not getting adequate response, then change. Many of us have

>had to do that with one doctor or another. Having a primary care physician

>who is responsive and respects your opinions is of utmost importance if you

>have a child with a chronic condition.

>

>Kathy C.

>mom to and

>

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

>DON'T HATE YOUR RATE!

>Get a NextCard Visa, in 30 seconds! Get rates as low as

>0.0% Intro or 9.9% Fixed APR and no hidden fees.

>Apply NOW!

>http://click./1/2120/1/_/368657/_/951998268/

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

>

>Brought to you by www.imdn.org - an on-line support group for those affected by

mitochondrial disease.

>

>

[Guest guest]

Hi Becky,

Oh Boy, can I relate to what your going through with the therapists!

elizabeth too does not make eye contact most of the time and kind of

stares off a lot. She plays with toys without looking at them, etc

etc. And I have heard exactly what your hearing now. " Well she is

very alert right now. " Well, Gees, yes right now she is. Most of the

time she is not. It makes you crazy doesn't it?

does not respond to her name or the word no o r any

language in general. so I told the speech therapist this. Even when

I've walked into a quiet room and said her name will still

not respond sometimes. But, wouldn't you know when the speech

therapist said " " in the therapy session loudly she looked

over at her. I then have to say that she doesn't do this all the time

etc etc! Then they look at you like your making it up or something.

Before I knew about mito, I researched everything I could about

autism I was coinvinced that was autistic. I still wonder

if she is. Would love to have someone take me seriously and

investigate, but she is only 16 months and they won't do tests (I

don't think) until at least 18 months.

After reading all the different posts about our children having

suspected autism, could this also be part of mito? Having these

autistic like behaviors?

You know you were talking about back arching. I always thought it was

strange the way could flex her back and throw herself

backwards. Makes me think.....

Thanks for listening. I just wanted to let you know that I can relate.

Mother of age 3 and 16 months (suspected mito, MRI

today!)

> >

> >

> >Hi Becky,

> >Have you ever had Avery tested for reflux. My son arched his back

and

> >screamed for the first 3 to 4 mths of life. The Doctors said it

was the

> >reflux. As for some of the other things on the list, I have a

nephew

> >who is autistic. My sister said that seemed to be the only

diagnosis

> >they could give him. ( He was diagnosed with Leigh's as an infant,

but

> >his abnormal tests returned to normal and the revoked the

diagnosis.)

> >He does hand flapping he loves snow globes and candles. I think

they

> >were the only things he would play with. If you consider sitting

and

> >staring, playing. I'm most certainly not a doctor, but I would

think if

> >your son is doing all of these things that his pediatrician would

be

> >concerned also. I know mine would. Also, to you have an Early

> >Intervention service in the state and county that you live in.

They

> >usually will come to your home and do an evaluation if your child

is

> >under the age of three. If I were you I would get in touch with

them

> >immediately.

> >

> >Good Luck and let me know what happens.

> >

> >Barbara

> >Mom to 5, Max 2 1/2, reflux and speech articulation

problems

> >and Corbin 17mths, possible mito, reflux, asthma, encephalopathy,

oral

> >motor and motor planning dyspraxia and now elevated

mucopolysaccharides.

> >

> >

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

-------------------------

> >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0%

> >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> >http://click./1/937/1/_/368657/_/952054154/

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

-------------------------

> >

> >Brought to you by www.imdn.org - an on-line support group for

those affected by mitochondrial disease.

> >

> >

[Guest guest]

Hi Again, Becky.

I get the exact same mixed message. From some people all I hear is

" your are your childs best advocate. " " What? You haven't called in to

get the test results yet? " from other people (like the neurologist) I

get just the opposite " Well, I don't want to say your an

over-reactive mother, but... " or " We're doing everything we can just

sit back and relax.... "

Come on.

Sometimes I'll get the same mixed messages from the same doctor.

It makes you want to scream. A lot of people are put off too by the

fact that I am always searching the internet for info.

Hey, does anyone have a problem with the doctors not telling you what

they are considering with your child. I started researching mito at

the same time they were investigating it and they didn't tell me

until I asked them. I understand that they don't want to get anyone

conserned until they know for sure, but it would be nice to know. As

a person it makes sense, as a mother it seems asanine.

Anyway, just had to tell you that.

Mother of Sweet and Darling (suspected mito)

> >From: KCorley309@...

> >

> >In a message dated 03/02/2000 2:52:58 AM Pacific Standard Time,

> >beckyg@... writes:

> >

> >> Can anyone help me? Where do I go now? What do I do? How do I

find a

> >> doctor that won't think I'm crazy?

> >

> >I think many doctors reserve judgement until age three because

they are

> >unwilling to label a child with autism until they are certain. I

think it is

> >a mistake to ignore it until then, because there are some

interventions that

> >will make a difference (not cure but address some of the aspects)

in the

> >child's life that should begin before the age of three. My only

two ideas

> >are this . . . is your child already in early intervention? If

not, see if

> >you can find someplace in your town where they offer special

services to

> >young children. Many times, they don't expect all the little ones

to have

> >definitive diagnoses this young. went in at 4 months just on

the basis

> >of his failure to thrive. It sounds as though there is enough

present that if

> >you share your concerns, they will be willing to help you.

> >

> >The other idea is that sometimes it takes changing docs. If you

have

> >addressed all of this with your doctor . . . take your list and

read it! . .

> >. and you are not getting adequate response, then change. Many of

us have

> >had to do that with one doctor or another. Having a primary care

physician

> >who is responsive and respects your opinions is of utmost

importance if you

> >have a child with a chronic condition.

> >

> >Kathy C.

> >mom to and

> >

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

-------------------------

> >DON'T HATE YOUR RATE!

> >Get a NextCard Visa, in 30 seconds! Get rates as low as

> >0.0% Intro or 9.9% Fixed APR and no hidden fees.

> >Apply NOW!

> >http://click./1/2120/1/_/368657/_/951998268/

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

-------------------------

> >

> >Brought to you by www.imdn.org - an on-line support group for

those affected by mitochondrial disease.

> >

> >

[Guest guest]

Becky,

I can SOOOO relate to where you are with this! Lexi walks, talks, and is

developmentally doing pretty well (just had her assessment yesterday and she

is 18-24 mo range). However, when she is out of energy, her body simply

stops functioning: seizures, cardiac and respiratory arrest...sooo many

turning blue spells i have simply quit counting!! So for the most part she

" looks normal " ....and most people tend to think i am reaching for straws, or

that i am imagining things. They say " she looks great to me " and i've even

had the ever-popular " there's nothing wrong with that girl! " DON'T I

WISH!!!!!!!

That was the mom part of me...now for the speech-therapist part of me: I do

know that some therapists try a little too hard to " blow sunshine " your

way...by that i mean they will sometimes use one or even a few good sessions

to give the idea that the child has mastered a skill....but you are

absolutely correct in saying that just because he did accomplish a goal two

weeks ago does NOT mean mastery (don't we ALL wish?!?!). It it encouraging,

however, in that it tells me that Avery IS capable of establishing eye

contact, and playing with toys!! Now, the trick is to help him find a way to

consistently be able to access those skills....and that is where time and

patience pays off. Keep in mind that with Avery's fragile biochemical

balance there are going to be days when he simply is not able to access

skills he was able to do yesterday. It is frustrating all the way around,

but those skills ARE still in there....

Just keep up the GREAT work! Avery seems to be in VERY capable and loving

hands (YOURS!!).....

ruth

[Guest guest]

Ruth,

You are so right!!! I remember way back when, 's seem to meet his

goals. Even now, when he meets goals, we like to wait and see what happens.

Oh to many time, we were told the great news. And just that fast it was

gone.

The line that they looks so good, that they can't have a problems, really

gets me. has ever since being on TPN has looked great. You would

never know he has the problems he does. But it the eyes that give these

kids away. And most people don't look into the eyes. We parents can see

it. Even before anything happens. We can see changes. I know with

before something's happens, just by looking into his eyes. I don't know

what is wrong, but they lose something. I get this guy feeling. 9 times

out of 10, I am right. Either he obstructs, or a infection sets in, or

something off the wall happens. But I can usefully tell before he get sick.

has met many goals we did not think he would ever meet. But it been a

long hard road. We still lose these goals off and on, but so far we have

been lucky to win them back. So I hope now that he is getting older, that

we will not lose them. I am saying some extra prayers, and crossing the

fingers, and toes, and what ever I can. Not just for , but for all of

the kids.

Ellen

[Guest guest]

Good Luck Beckey and I'll say a prayer for you and Avery

Re: I think Avery might be autistic? Any advice or comments.

>

>

> Barbara,

> I don't know much about reflux. Avery has never had this addressed but I

certainly think it might be something that is affecting him.

> It was incredible how much he arched his back. I took him to the dr. so

many times for this. No one could figure out why he did this.

> He is already in Early Intervention. I am not so pleased with how the

therapists have reacted to my " theory " of Avery possibly being on the

autistic spectrum.

> It angers me.

> They tell me over and over again that they won't check off things on their

list that Avery is supposed to do until they consider that he has mastered

it ... doing it anywhere and anytime for anyone. I have understood this

important distinction from doing something once to doing it a million times.

> BUT, now the tables are turned. I say he doesn't have good eye contact and

they respond ... well he looked at me really well last week and a couple of

weeks ago, remember that really good session?

> YES, but he doesn't by any means have eye contact mastered.

> I say, he doesn't play with toys appropriately and they convey the point

that well remember that one time he did such and such. I've seen him play

okay before.

> YES, so have I a couple of times too but that is not MASTERY!!!

> Oh well. I am going it alone. No support. We'll see what Avery's

pediatrician says on Friday.

> Wish me luck and say a prayer.

> Thank you,

> Becky

> (Mom to Avery, Complex III.)

>

> At 09:43 PM 1/31/2000 -0500, you wrote:

> >

> >

> >Hi Becky,

> >Have you ever had Avery tested for reflux. My son arched his back and

> >screamed for the first 3 to 4 mths of life. The Doctors said it was the

> >reflux. As for some of the other things on the list, I have a nephew

> >who is autistic. My sister said that seemed to be the only diagnosis

> >they could give him. ( He was diagnosed with Leigh's as an infant, but

> >his abnormal tests returned to normal and the revoked the diagnosis.)

> >He does hand flapping he loves snow globes and candles. I think they

> >were the only things he would play with. If you consider sitting and

> >staring, playing. I'm most certainly not a doctor, but I would think if

> >your son is doing all of these things that his pediatrician would be

> >concerned also. I know mine would. Also, to you have an Early

> >Intervention service in the state and county that you live in. They

> >usually will come to your home and do an evaluation if your child is

> >under the age of three. If I were you I would get in touch with them

> >immediately.

> >

> >Good Luck and let me know what happens.

> >

> >Barbara

> >Mom to 5, Max 2 1/2, reflux and speech articulation problems

> >and Corbin 17mths, possible mito, reflux, asthma, encephalopathy, oral

> >motor and motor planning dyspraxia and now elevated mucopolysaccharides.

> >

> >

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

> >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0%

> >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> >http://click./1/937/1/_/368657/_/952054154/

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

> >

> >Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

> >

> >

>

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

> DON'T HATE YOUR RATE!

> Get a NextCard Visa, in 30 seconds! Get rates as low as

> 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> Apply NOW!

> http://click./1/2120/1/_/368657/_/952504140/

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

>

> Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

>

[Guest guest]

I will second that, for most peds, although I really like the current one we

have.....

I've had a few really really bad ones though...

, , 8

Cure Rett Now/Rett Syndrome Resources http://expage.com/page/curerettnow

----------

>From: KAFoley2@...

>To: Mitoonelist

>Subject: Re: I think Avery might be autistic? Any advice or comments.

>Date: Thu, Mar 9, 2000, 12:25 AM

>

> From: KAFoley2@...

>

> Becky,

> Warning!! Pediatrician's opinions in mly opinion suckl

> Kathy F

>

[Guest guest]

Thank so much for info, you've been great.

Vange

Re: I think Avery might be autistic? Any advice or comments.

>

>

> Is there any web sites you think will be helpful? Vange

>

> There certainly are a lot of websites that deal with autism.

> www.mercola.com , www.gnd.org, www.oneworld.org/autism_uk/,

> http://members.spree.com/autism/, www.autism.com/ari/,

> www.AutismNDI@..., www.secretin.com, www.megson.com or sign up for

> Bernard Rimland, Ph.D.'s newsletter. Autism Research Institute, 4182

> Avenue, San Diego, CA 92116 Get PhD book Special Diets for

> Special Kids to help you try a diet that has helped many. www.NIDS.net

> www.kirkmanlabs.com

>

> Dr. Shaw has a new book out on the subject. (Visit his website at

> www.autism.com/shaw-yeast/ or www.greatplainslaboratory.com or phone

> to order the book.)

> http://personal.atl.bellsouth.net/atl/s/o/sojmed/sara's-diet.html

> http://osiris.sunderland.ac.uk/autism/aru.htm www.909shot.com

>

> I like Willissonelist for a list. But I hear the one at St. s is

> very good.

>

> Gosh, there is so much to consider. The first thing is probably to get

one

> of the DAN doctors. I like Kane's idea of first normalizing the pH and

> electrolytes before doing anything else. Gluten free / Casein free diet.

I

> don't know if the DAN doctors are yet aware of the importance of the

thyroid

> aspect. The people at www.brodabarnes.com are amoung the few who could

help

> with the hormones. Slowly add retinol A, coenzyme B6, magnesium, thyroid,

> folic acid, TMG and coQ10. A special from of B12, hydroxycobalamin,

should

> probably help too, because it helps people with CFIDS. Then check stomach

> pH, try Epsom salt baths, and slowly add MSM and molybdenum. Then head

for

> the more exotic treatments like NAET, Essiac tea, homeopathics. In

general,

> oils are to be added later, otherwise there might be a problem with the

EFAs

> and seizures. This may make it difficult to follow Dr. Megson's

suggestion

> of using fish oil for its retinol vitamin A content. I think a better

> solution is to get the retinol A from another source. You might check

with

> Allergy Research about their children's multiple vitamin. It is usually

> tolerated by autistic children, and it contains the retinol form of

vitamin

> A.

>

> Polly

>

>

>

>

>

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

> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> http://click./1/936/1/_/368657/_/952326919/

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

>

> Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

>