Is it time to admit defeat?

March 20, 2012

As a mother of a 7 year old daughter who has been doing biomedical et al since 3

and worrying for my child for 7 years I feel like I have come to the end of the

road. I dont want to get out of bed in the morning. Pathetic yes but after all

this hope and prayer and hard work we have recently found out my daughter has a

gene duplication 22 blocks speech and motor. We have have done everything under

the sun from naturals...diets all protocols NIDS, ac chelation, etc etc and we

just cant recover her. She is now stuck in this limbo of not in the completely

non- functional world and and not the typical world and the worst part is she

knows it! This is the part that kills me. I cant protect from the world. I can't

make the kids be friends with her because her speech is poor and her ability to

articulate her thoughts is so blocked. She asks me everyday when is she going to

talk like the kids, when will she have friends and I dont want to lie. She also

is excited to grow up and have a family and children of her own and my heart

breaks. She is screwed! And there is not a single thing I can do anymore.

To make matters worse they have just found on her MRI i malformation which will

give her a 90% chance of getting seizures. The could be huge and they might not

be treatable with meds...we wont know till they happen. I believe in prayer but

am now not naive enough to know the possibility of fully recovering my child is

pretty slim. How do I live? When I thought i could heal her I had hope and now

that is stolen from us I need to come to accept this reality but for some reason

I cannot. I am weak and watching her suffer everyday seems too much for me. I

know intellectually I should be there for her but I don't seem to be able to

pull it together.

I know there are mom's out there with children in the worst possible conditions

and am wondering how you pull it together for child and other people. I cant

even socialize anymore as I am no longer able to fake for the rest of the

people. We do not have other children as we had put our focus on recovering her

thinking we could.

Leigh

March 20, 2012

Sounds like you have given up in your email, but she has made some progress??? Is she better or worse than where you started. My son got much worse before it got better. Has she improved? Not sure where you live but Corby with Austic Solution Center has made children with no hope her life's mission! She is located n Cordova Tn. She has helped families all over the world. She started with her own autistic child [non verbal]. If nterested send me your email and I will send you her info. I know its hard coming from a stranger but try to stay positive. Positive thoughts, are more powerful than anything else you can do for her. Positve thoughts will lead you to the right answers. As all of us know, this is not a simple solution. What works for one may not work for another. If it were that easy, there wouldn't be groups like ths informing each other. I

just recently heard of the color purple helping an autistic child with natural healng. They painted her room purple, clothes purple and the parents believe it helped calm her to allow healing to begin. Please dont gve up.

Always Call

Christie Gravatt

We are not human beings having a spiritual experience, we are spiritual beings having a human experience!

Subject: Is it time to admit defeat?To: mb12valtrex Date: Tuesday, March 20, 2012, 3:25 PM

As a mother of a 7 year old daughter who has been doing biomedical et al since 3 and worrying for my child for 7 years I feel like I have come to the end of the road. I dont want to get out of bed in the morning. Pathetic yes but after all this hope and prayer and hard work we have recently found out my daughter has a gene duplication 22 blocks speech and motor. We have have done everything under the sun from naturals...diets all protocols NIDS, ac chelation, etc etc and we just cant recover her. She is now stuck in this limbo of not in the completely non- functional world and and not the typical world and the worst part is she knows it! This is the part that kills me. I cant protect from the world. I can't make the kids be friends with her because her speech is poor and her ability to articulate her thoughts is so blocked. She asks me everyday when is she going to talk like the kids, when will she have friends and I dont want to lie. She also is

excited to grow up and have a family and children of her own and my heart breaks. She is screwed! And there is not a single thing I can do anymore. To make matters worse they have just found on her MRI i malformation which will give her a 90% chance of getting seizures. The could be huge and they might not be treatable with meds...we wont know till they happen. I believe in prayer but am now not naive enough to know the possibility of fully recovering my child is pretty slim. How do I live? When I thought i could heal her I had hope and now that is stolen from us I need to come to accept this reality but for some reason I cannot. I am weak and watching her suffer everyday seems too much for me. I know intellectually I should be there for her but I don't seem to be able to pull it together. I know there are mom's out there with children in the worst possible conditions and am wondering how you pull it together for child and other people.

I cant even socialize anymore as I am no longer able to fake for the rest of the people. We do not have other children as we had put our focus on recovering her thinking we could.Leigh

March 20, 2012

Leigh,I can relate so much with what you are going through. As soon as my son was diagnosed two years ago when he was 2, ( he is now 4 yrs old)I stopped working and researched all I could to help my son. I have done a lot of things myself, like Biomed, GFCF, ABA, Hbot and Stem Cell and I still plan to add more things for him to do. I live in Australia and I don't have much friends who'm I can share my problems. I sometimes cry and think when will this nightmare going to end. But at this point I still am prepared to fight for him, I don't know for how long. He has little improvement but still has a long way to go. He is placid and affectionate. He babbles and can say 2 or 3 words but very rarely. He stimms a lot and has separation anxiety from me.My son regressed at age 1 and I always know something in him was never the same. He was a smart baby. I

sometimes tell my husband or my sister that I just want to give up, meaning I don'e wan't to live anymore. I also am aware that other people have worse situation, but for me this is my life and it hurts me to think what is going to happen to him in the future when I'm gone. I still question as to why and how this happened to us. I used to be fairly religious but now, I don't know anymore...I don't know where I get my strength from but like I said I wish this nightmare would stop. I did see a councilor but what she wanted for me to do is to accept my sons' faith and I can't do that. I believe he was not born this way and he deserves as much of lifes' opportunity as anyone else.I do wish I had a friend I can really relate to and speak of all this things, someone who is going thru the same and yet are not giving up. Someone to pull me through for my sons' sake. I'm thankful of this group at least I' know there are mothers and

fathers /carers that are in the same boat.Thanks Leigh for opening up this topic again. You are definitely not alone. I struggle every day with this...mum of 4 yr old asd

Subject: Is it time to admit defeat?To: mb12valtrex Date: Tuesday, March 20, 2012, 3:25 PM

As a mother of a 7 year old daughter who has been doing biomedical et al since 3 and worrying for my child for 7 years I feel like I have come to the end of the road. I dont want to get out of bed in the morning. Pathetic yes but after all this hope and prayer and hard work we have recently found out my daughter has a gene duplication 22 blocks speech and motor. We have have done everything under the sun from naturals...diets all protocols NIDS, ac chelation, etc etc and we just cant recover her. She is now stuck in this limbo of not in the completely non- functional world and and not the typical world and the worst part is she knows it! This is the part that kills me. I cant protect from the world. I can't make the kids be friends with her because her speech is poor and her ability to articulate her thoughts is so blocked. She asks me everyday when is she going to talk like the kids, when will she have friends and I dont want to lie. She also is

excited to grow up and have a family and children of her own and my heart breaks. She is screwed! And there is not a single thing I can do anymore. To make matters worse they have just found on her MRI i malformation which will give her a 90% chance of getting seizures. The could be huge and they might not be treatable with meds...we wont know till they happen. I believe in prayer but am now not naive enough to know the possibility of fully recovering my child is pretty slim. How do I live? When I thought i could heal her I had hope and now that is stolen from us I need to come to accept this reality but for some reason I cannot. I am weak and watching her suffer everyday seems too much for me. I know intellectually I should be there for her but I don't seem to be able to pull it together. I know there are mom's out there with children in the worst possible conditions and am wondering how you pull it together for child and other people.

I cant even socialize anymore as I am no longer able to fake for the rest of the people. We do not have other children as we had put our focus on recovering her thinking we could.Leigh

March 20, 2012

Sounds like you're suffering from depression. I know all about that, and I finally saw my son's DAN who also treats adults and she put me on an antidepressant & some antianxiety supps. I knew I could not be an advocate for my son and keep fighting for him everyday (even though, like you, my child is 7, we've been doing biomed for years, and he's still functionally nonverbal and we've made little progress). I have to try to take care of myself or he doesn't have a chance. And you know what, I believe my son will be healed one day, but even if that never happens and I end up taking care of him for the rest of my life, that's ok. He's my son and I love him and if that's the way it ultimately works out, I'll still be proud of him and he'll still contribute to society. If you're like me and most autism moms who put their kids first and themselves last, you'll help your daughter so much if you try to take care of yourself and make yourself a priority for awhile. And I personally don't think there's anything wrong w/ taking a break from the autism fight for awhile. If you're burned out, take a break, put things on maintenance w/ your daughter's regime and take a mental break. I've had to do that and it did help. Soraya

As a mother of a 7 year old daughter who has been doing biomedical et al since 3 and worrying for my child for 7 years I feel like I have come to the end of the road. I dont want to get out of bed in the morning. Pathetic yes but after all this hope and prayer and hard work we have recently found out my daughter has a gene duplication 22 blocks speech and motor. We have have done everything under the sun from naturals...diets all protocols NIDS, ac chelation, etc etc and we just cant recover her. She is now stuck in this limbo of not in the completely non- functional world and and not the typical world and the worst part is she knows it! This is the part that kills me. I cant protect from the world. I can't make the kids be friends with her because her speech is poor and her ability to articulate her thoughts is so blocked. She asks me everyday when is she going to talk like the kids, when will she have friends and I dont want to lie. She also is excited to grow up and have a family and children of her own and my heart breaks. She is screwed! And there is not a single thing I can do anymore.

To make matters worse they have just found on her MRI i malformation which will give her a 90% chance of getting seizures. The could be huge and they might not be treatable with meds...we wont know till they happen. I believe in prayer but am now not naive enough to know the possibility of fully recovering my child is pretty slim. How do I live? When I thought i could heal her I had hope and now that is stolen from us I need to come to accept this reality but for some reason I cannot. I am weak and watching her suffer everyday seems too much for me. I know intellectually I should be there for her but I don't seem to be able to pull it together.

I know there are mom's out there with children in the worst possible conditions and am wondering how you pull it together for child and other people. I cant even socialize anymore as I am no longer able to fake for the rest of the people. We do not have other children as we had put our focus on recovering her thinking we could.

Leigh

March 20, 2012

Leigh,Thanks for opening up and sharing that special autism hell we all face every now and then and just don't articulate. It is very easy to let the autism get you down. And yes every now and then, even after 11 years of this, I still allow myself a pity cry every now and then. But I found something to help me through those times and I will share it. Lock into your mind a time your child made you laugh or when you realized they just did something they couldn't do before. When you get into that autism low, unlock that memory. Trust me it will make you smile. Every child gets better in some way- language, motor, cognitive, that sometimes we just forget to remember where they were...margie in va Sounds like you're suffering from depression. I know all about that, and I finally saw my son's DAN who also treats adults and she put me on an antidepressant & some antianxiety supps. I knew I could not be an advocate for my son and keep fighting for him everyday (even though, like you, my child is 7, we've been doing biomed for years, and he's still functionally nonverbal and we've made little progress). I have to try to take care of myself or he doesn't have a chance. And you know what, I believe my son will be healed one day, but even if that never happens and I end up taking care of him for the rest of my life, that's ok. He's my son and I love him and if that's the way it ultimately works out, I'll still be proud of him and he'll still contribute to society. If you're like me and most autism moms who put their kids first and themselves last, you'll help your daughter so much if you try to take care of yourself and make yourself a priority for awhile. And I personally don't think there's anything wrong w/ taking a break from the autism fight for awhile. If you're burned out, take a break, put things on maintenance w/ your daughter's regime and take a mental break. I've had to do that and it did help. Soraya As a mother of a 7 year old daughter who has been doing biomedical et al since 3 and worrying for my child for 7 years I feel like I have come to the end of the road. I dont want to get out of bed in the morning. Pathetic yes but after all this hope and prayer and hard work we have recently found out my daughter has a gene duplication 22 blocks speech and motor. We have have done everything under the sun from naturals...diets all protocols NIDS, ac chelation, etc etc and we just cant recover her. She is now stuck in this limbo of not in the completely non- functional world and and not the typical world and the worst part is she knows it! This is the part that kills me. I cant protect from the world. I can't make the kids be friends with her because her speech is poor and her ability to articulate her thoughts is so blocked. She asks me everyday when is she going to talk like the kids, when will she have friends and I dont want to lie. She also is excited to grow up and have a family and children of her own and my heart breaks. She is screwed! And there is not a single thing I can do anymore. To make matters worse they have just found on her MRI i malformation which will give her a 90% chance of getting seizures. The could be huge and they might not be treatable with meds...we wont know till they happen. I believe in prayer but am now not naive enough to know the possibility of fully recovering my child is pretty slim. How do I live? When I thought i could heal her I had hope and now that is stolen from us I need to come to accept this reality but for some reason I cannot. I am weak and watching her suffer everyday seems too much for me. I know intellectually I should be there for her but I don't seem to be able to pull it together. I know there are mom's out there with children in the worst possible conditions and am wondering how you pull it together for child and other people. I cant even socialize anymore as I am no longer able to fake for the rest of the people. We do not have other children as we had put our focus on recovering her thinking we could. Leigh

March 20, 2012

Well said.. I second everything Soraya has said and add a lot of hugs and prayers for u and uo beautiful little girlSent from my iPod

Sounds like you're suffering from depression. I know all about that, and I finally saw my son's DAN who also treats adults and she put me on an antidepressant & some antianxiety supps. I knew I could not be an advocate for my son and keep fighting for him everyday (even though, like you, my child is 7, we've been doing biomed for years, and he's still functionally nonverbal and we've made little progress). I have to try to take care of myself or he doesn't have a chance. And you know what, I believe my son will be healed one day, but even if that never happens and I end up taking care of him for the rest of my life, that's ok. He's my son and I love him and if that's the way it ultimately works out, I'll still be proud of him and he'll still contribute to society. If you're like me and most autism moms who put their kids first and themselves last, you'll help your daughter so much if you try to take care of yourself and make yourself a priority for awhile. And I personally don't think there's anything wrong w/ taking a break from the autism fight for awhile. If you're burned out, take a break, put things on maintenance w/ your daughter's regime and take a mental break. I've had to do that and it did help. Soraya

As a mother of a 7 year old daughter who has been doing biomedical et al since 3 and worrying for my child for 7 years I feel like I have come to the end of the road. I dont want to get out of bed in the morning. Pathetic yes but after all this hope and prayer and hard work we have recently found out my daughter has a gene duplication 22 blocks speech and motor. We have have done everything under the sun from naturals...diets all protocols NIDS, ac chelation, etc etc and we just cant recover her. She is now stuck in this limbo of not in the completely non- functional world and and not the typical world and the worst part is she knows it! This is the part that kills me. I cant protect from the world. I can't make the kids be friends with her because her speech is poor and her ability to articulate her thoughts is so blocked. She asks me everyday when is she going to talk like the kids, when will she have friends and I dont want to lie. She also is excited to grow up and have a family and children of her own and my heart breaks. She is screwed! And there is not a single thing I can do anymore.

To make matters worse they have just found on her MRI i malformation which will give her a 90% chance of getting seizures. The could be huge and they might not be treatable with meds...we wont know till they happen. I believe in prayer but am now not naive enough to know the possibility of fully recovering my child is pretty slim. How do I live? When I thought i could heal her I had hope and now that is stolen from us I need to come to accept this reality but for some reason I cannot. I am weak and watching her suffer everyday seems too much for me. I know intellectually I should be there for her but I don't seem to be able to pull it together.

I know there are mom's out there with children in the worst possible conditions and am wondering how you pull it together for child and other people. I cant even socialize anymore as I am no longer able to fake for the rest of the people. We do not have other children as we had put our focus on recovering her thinking we could.

Leigh

March 20, 2012

leigh,

first i want to give my two cents about docters genetic testing. i think half the time they dont even understand thier own bloody test ...i think docters are wrong many many many times....about so much from the test they give to the diagnosis to the treatment....grrrrrr...docters....

I wont go on about what i think of docters.....let me just tell you what is in my heart of hearts...and that is nothing is incurable....somewhere at some point in time someone has been healed from it.

we are all on spiritual journeys....life on this planet is unfolding according to the lessons we on a higher spiritual plane need to learn...we can change our path if it is something we truly want ....

our children also are on a spiritual journey....

one time i sent my sons picture to a faith healer....for two days my son was completely normal. he started talking age appropriate....all his physical symptoms gone he was completely recovered. after two days he went back to his autistic self...

I felt that this was a message from God....as it happened at a time my faith was also wavering.....I felt God wanted me to know that he is all powerful! that he can heal my son at any time!

but what is my sons lessons he is choosing to learn this lifetime? what are my lessons for this life time?

i had been told a few times my healing and my sons healing are intertwined.....sort of he chose to go thru this to help me learn my lesons....

that doesnt mean that i dont have days that...i feel God has left us far far away.....

i am writing a book about my life with PTSD amoung other things...it is a dark book....in my last chapter I spoke of how wrong it all was....and I felt there was no lesson in my and my sons suffering....only bitterness and pain...that just left me that much more broken of a human being...

but today....today my son had a better day....yes small things but still i choose to see Gods grace in the small gifts...tomorrow i may be screaming in my car with the windows rolled up..er,again...

i find side roads to drive down when I do that..

i have a hard time talkin to people, too....im scared of them. they see me as wierd. the lady with eyes red and sad all the time from crying....who gives her son a wierd diet....who never goes out .

they dont understand me and dont even want to...im just so diffrent from most folks....

so i feel sorry for myself for a couple days....write in my dark book.....when my son goes to sleep at night i cry out to God....be more clear! your directions are kind of fuzzy lord! please...i need more clear signs of which way to go lord!

its not easy...without a doubt.....some days are a lot harder then others...

nothing worth fighting for ever comes easy.... please dont give up.....send me emails off list and tell me how much it sucks...tell me how angry you are and then go back to fighting.....

please keep fighting......

channa

To: mb12valtrex Sent: Tuesday, March 20, 2012 4:25 PMSubject: Is it time to admit defeat?

As a mother of a 7 year old daughter who has been doing biomedical et al since 3 and worrying for my child for 7 years I feel like I have come to the end of the road. I dont want to get out of bed in the morning. Pathetic yes but after all this hope and prayer and hard work we have recently found out my daughter has a gene duplication 22 blocks speech and motor. We have have done everything under the sun from naturals...diets all protocols NIDS, ac chelation, etc etc and we just cant recover her. She is now stuck in this limbo of not in the completely non- functional world and and not the typical world and the worst part is she knows it! This is the part that kills me. I cant protect from the world. I can't make the kids be friends with her because her speech is poor and her ability to articulate her thoughts is so blocked. She asks me everyday when is she going to talk like the kids, when will she have friends and I dont want to lie. She also is

excited to grow up and have a family and children of her own and my heart breaks. She is screwed! And there is not a single thing I can do anymore. To make matters worse they have just found on her MRI i malformation which will give her a 90% chance of getting seizures. The could be huge and they might not be treatable with meds...we wont know till they happen. I believe in prayer but am now not naive enough to know the possibility of fully recovering my child is pretty slim. How do I live? When I thought i could heal her I had hope and now that is stolen from us I need to come to accept this reality but for some reason I cannot. I am weak and watching her suffer everyday seems too much for me. I know intellectually I should be there for her but I don't seem to be able to pull it together. I know there are mom's out there with children in the worst possible conditions and am wondering how you pull it together for child and other people.

I cant even socialize anymore as I am no longer able to fake for the rest of the people. We do not have other children as we had put our focus on recovering her thinking we could.Leigh

March 20, 2012

I agree with Channa. I don't think doctors know what they're talking

about. Genetic anomalies have very specific affects. It makes it so

you can't metabolize certain things so it causes a cascade of effects.

It's not the " gene " that " blocks " the ability to do something...it's

that they cause certain things to happen with metabolism. It doesn't

matter that the root cause is " genetic " -- there is always a

workaround -- it can be hacked.

One of our neighbors is a woman who was born with spinal bifida. They

said that she would never walk, would need constant support and never

be capable of independent living. Doctors said that it would be

unlikely that she would lead a " normal " life. She's incredible. She

drives a car. She walks sometimes (not very long distances, but she

has a scooter to get around longer distances. She has a husband and a

son, she has a job as a receptionist in a company that produces

scientific equipment, she's fought and beaten cancer...twice. And her

cancer has gone into remission now. She had the worst kind of

leukemia and doctors thought it was going to be fatal. She started

seeing a naturopathic doctor and beat it.

Anything is possible. A lot of these doctors who run these genetic

tests don't know what they're talking about. I know how you feel b/c

my daughter also has major issues with speech. But the things she's

telling you she wants, it sounds like you've already won half the

battle.

> leigh,

> first i want to give my two cents about docters genetic testing. i think

> half the time they dont even understand thier own bloody test ...i think

> docters are wrong many many many times....about so much from the test they

> give to the diagnosis to the treatment....grrrrrr...docters....

> I wont go on about what i think of docters.....let me just tell you what is

> in my heart of hearts...and that is nothing is incurable....somewhere at

> some point in time someone has been healed from it.

> we are all on spiritual journeys....life on this planet is unfolding

> according to the lessons we on a higher spiritual plane need to learn...we

> can change our path if it is something we truly want ....

> our children also are on a spiritual journey....

> one time i sent my sons picture to a faith healer....for two days my son was

> completely normal. he started talking age appropriate....all his physical

> symptoms gone he was completely recovered. after two days he went back to

> his autistic self...

> I felt that this was a message from God....as it happened at a time my faith

> was also wavering.....I felt God wanted me to know that he is all powerful!

> that he can heal my son at any time!

> but what is my sons lessons he is choosing to learn this lifetime? what are

> my lessons for this life time?

> i had been told a few times my healing and my sons healing are

> intertwined.....sort of he chose to go thru this to help me learn my

> lesons....

> that doesnt mean that i dont have days that...i feel God has left us far far

> away.....

> i am writing a book about my life with PTSD amoung other things...it is a

> dark book....in my last chapter I spoke of how wrong it all was....and I

> felt there was no lesson in my and my sons suffering....only bitterness and

> pain...that just left me that much more broken of a human being...

> but today....today my son had a better day....yes small things but still i

> choose to see Gods grace in the small gifts...tomorrow i may be screaming in

> my car with the windows rolled up..er,again...

> i find side roads to drive down when I do that..

> i have a hard time talkin to people, too....im scared of them. they see me

> as wierd. the lady with eyes red and sad all the time from crying....who

> gives her son a wierd diet....who never goes out .

> they dont understand me and dont even want to...im just so diffrent from

> most folks....

> so i feel sorry for myself for a couple days....write in my dark

> book.....when my son goes to sleep at night i cry out to God....be more

> clear! your directions are kind of fuzzy lord! please...i need more clear

> signs of which way to go lord!

> its not easy...without a doubt.....some days are a lot harder then others...

> nothing worth fighting for ever comes easy.... please dont give up.....send

> me emails off list and tell me how much it sucks...tell me how angry you are

> and then go back to fighting.....

> please keep fighting......

> channa

>

> ________________________________

>

> To: mb12valtrex

> Sent: Tuesday, March 20, 2012 4:25 PM

> Subject: Is it time to admit defeat?

>

> As a mother of a 7 year old daughter who has been doing biomedical et al

> since 3 and worrying for my child for 7 years I feel like I have come to the

> end of the road. I dont want to get out of bed in the morning. Pathetic yes

> but after all this hope and prayer and hard work we have recently found out

> my daughter has a gene duplication 22 blocks speech and motor. We have have

> done everything under the sun from naturals...diets all protocols NIDS, ac

> chelation, etc etc and we just cant recover her. She is now stuck in this

> limbo of not in the completely non- functional world and and not the typical

> world and the worst part is she knows it! This is the part that kills me. I

> cant protect from the world. I can't make the kids be friends with her

> because her speech is poor and her ability to articulate her thoughts is so

> blocked. She asks me everyday when is she going to talk like the kids, when

> will she have friends and I dont want to lie. She also is excited

> to grow up and have a family and children of her own and my heart breaks.

> She is screwed! And there is not a single thing I can do anymore.

>

> To make matters worse they have just found on her MRI i malformation which

> will give her a 90% chance of getting seizures. The could be huge and they

> might not be treatable with meds...we wont know till they happen. I believe

> in prayer but am now not naive enough to know the possibility of fully

> recovering my child is pretty slim. How do I live? When I thought i could

> heal her I had hope and now that is stolen from us I need to come to accept

> this reality but for some reason I cannot. I am weak and watching her suffer

> everyday seems too much for me. I know intellectually I should be there for

> her but I don't seem to be able to pull it together.

>

> I know there are mom's out there with children in the worst possible

> conditions and am wondering how you pull it together for child and other

> people. I cant even socialize anymore as I am no longer able to fake for the

> rest of the people. We do not have other children as we had put our focus on

> recovering her thinking we could.

>

> Leigh

>

March 20, 2012

there was a guy in a church i went to with spina bifida....he is married with a kid....beautiful guy....his handicap if that is what you call it....made him so much more heroic to me....i found myself with a stinkin crush on this beautiful man. and yes he was married and yes it was in church....

im a sinful woman to say the least....

To: mb12valtrex Sent: Tuesday, March 20, 2012 7:15 PMSubject: Re: Is it time to admit defeat?

I agree with Channa. I don't think doctors know what they're talkingabout. Genetic anomalies have very specific affects. It makes it soyou can't metabolize certain things so it causes a cascade of effects.It's not the "gene" that "blocks" the ability to do something...it'sthat they cause certain things to happen with metabolism. It doesn'tmatter that the root cause is "genetic" -- there is always aworkaround -- it can be hacked.One of our neighbors is a woman who was born with spinal bifida. Theysaid that she would never walk, would need constant support and neverbe capable of independent living. Doctors said that it would beunlikely that she would lead a "normal" life. She's incredible. Shedrives a car. She walks sometimes (not very long distances, but shehas a scooter to get around longer distances. She has a husband and ason, she has a job as a receptionist in a company that

producesscientific equipment, she's fought and beaten cancer...twice. And hercancer has gone into remission now. She had the worst kind ofleukemia and doctors thought it was going to be fatal. She startedseeing a naturopathic doctor and beat it.Anything is possible. A lot of these doctors who run these genetictests don't know what they're talking about. I know how you feel b/cmy daughter also has major issues with speech. But the things she'stelling you she wants, it sounds like you've already won half thebattle.> leigh,> first i want to give my two cents about docters genetic testing. i think> half the time they dont even understand thier own bloody test ...i think> docters are wrong many many

many times....about so much from the test they> give to the diagnosis to the treatment....grrrrrr...docters....> I wont go on about what i think of docters.....let me just tell you what is> in my heart of hearts...and that is nothing is incurable....somewhere at> some point in time someone has been healed from it.> we are all on spiritual journeys....life on this planet is unfolding> according to the lessons we on a higher spiritual plane need to learn...we> can change our path if it is something we truly want ....> our children also are on a spiritual journey....> one time i sent my sons picture to a faith healer....for two days my son was> completely normal. he started talking age appropriate....all his physical> symptoms gone he was completely recovered. after two days he went back to> his autistic self...> I felt that this was a message from

God....as it happened at a time my faith> was also wavering.....I felt God wanted me to know that he is all powerful!> that he can heal my son at any time!> but what is my sons lessons he is choosing to learn this lifetime? what are> my lessons for this life time?> i had been told a few times my healing and my sons healing are> intertwined.....sort of he chose to go thru this to help me learn my> lesons....> that doesnt mean that i dont have days that...i feel God has left us far far> away.....> i am writing a book about my life with PTSD amoung other things...it is a> dark book....in my last chapter I spoke of how wrong it all was....and I> felt there was no lesson in my and my sons suffering....only bitterness and> pain...that just left me that much more broken of a human being...> but today....today my son had a better day....yes small things

but still i> choose to see Gods grace in the small gifts...tomorrow i may be screaming in> my car with the windows rolled up..er,again...> i find side roads to drive down when I do that..> i have a hard time talkin to people, too....im scared of them. they see me> as wierd. the lady with eyes red and sad all the time from crying....who> gives her son a wierd diet....who never goes out .> they dont understand me and dont even want to...im just so diffrent from> most folks....> so i feel sorry for myself for a couple days....write in my dark> book.....when my son goes to sleep at night i cry out to God....be more> clear! your directions are kind of fuzzy lord! please...i need more clear> signs of which way to go lord!> its not easy...without a doubt.....some days are a lot harder then others...> nothing worth fighting for ever comes easy....

please dont give up.....send> me emails off list and tell me how much it sucks...tell me how angry you are> and then go back to fighting.....> please keep fighting......> channa>>> ________________________________> > To: mb12valtrex > Sent: Tuesday, March 20, 2012 4:25 PM> Subject: Is it time to admit defeat?>>>> As a mother of a 7 year old daughter who has been doing biomedical et al> since 3

and worrying for my child for 7 years I feel like I have come to the> end of the road. I dont want to get out of bed in the morning. Pathetic yes> but after all this hope and prayer and hard work we have recently found out> my daughter has a gene duplication 22 blocks speech and motor. We have have> done everything under the sun from naturals...diets all protocols NIDS, ac> chelation, etc etc and we just cant recover her. She is now stuck in this> limbo of not in the completely non- functional world and and not the typical> world and the worst part is she knows it! This is the part that kills me. I> cant protect from the world. I can't make the kids be friends with her> because her speech is poor and her ability to articulate her thoughts is so> blocked. She asks me everyday when is she going to talk like the kids, when> will she have friends and I dont want to lie. She also is

excited> to grow up and have a family and children of her own and my heart breaks.> She is screwed! And there is not a single thing I can do anymore.>> To make matters worse they have just found on her MRI i malformation which> will give her a 90% chance of getting seizures. The could be huge and they> might not be treatable with meds...we wont know till they happen. I believe> in prayer but am now not naive enough to know the possibility of fully> recovering my child is pretty slim. How do I live? When I thought i could> heal her I had hope and now that is stolen from us I need to come to accept> this reality but for some reason I cannot. I am weak and watching her suffer> everyday seems too much for me. I know intellectually I should be there for> her but I don't seem to be able to pull it together.>> I know there are mom's out there with children in the

worst possible> conditions and am wondering how you pull it together for child and other> people. I cant even socialize anymore as I am no longer able to fake for the> rest of the people. We do not have other children as we had put our focus on> recovering her thinking we could.>> Leigh>>>

March 20, 2012

Just want to say that most of us have said that too many times to

count. The tears, the pleading, the praying, the money. It is worth it

for my family's gains, but I have questioned it many times. I have some

thoughts for you. Learn all you can about the gene duplication and how

exactly it effects her. Many of us have genetic issues which can be

supplemented for, etc. My girl's geneticist said that she can test for

genes but has no idea what to do with the results or how to treat. So,

keep in mind the limited knowledge docs have, and seek out the docs who

do know. I would also learn about the MRI issue. There may be some who

have treated this condition. What exactly is the malformation? My kids

are the typical kids with autism (tickborne infections, strep, etc.).

But, my adopted girl is different. She has some weird things about

her. She does have Strep, but she also has a strong genetic issue

causing her symptoms, I am still testing for. She smells like a wet

mouse, and gets really out of control if she doesn't eat at least 30%

fruits and vegetables of her total intake. She also responds very well

to multivitamins, way to well. So, there is something very genetic

about her, and the simpliest things help her. I have to really pay

attention and look for patterns. Are there times when your daughter's

symptoms are better than others? Pay attention to what she has eaten,

or where she has been. Also, consider having a Zyto done with

Payne. A Zyto can help one learn about a person in an amazing way. To

be honest, I really feel that I have been successful due to praying and

praying. Things just seem to come together, then. Search your heart

and do what you think is best for your family.

Love and prayers,

Heidi N

As a mother of a 7 year old daughter who has been doing biomedical et al

since 3 and worrying for my child for 7 years I feel like I have come to

the end of the road. I dont want to get out of bed in the morning.

Pathetic yes but after all this hope and prayer and hard work we have

recently found out my daughter has a gene duplication 22 blocks speech

and motor. We have have done everything under the sun from

naturals...diets all protocols NIDS, ac chelation, etc etc and we just

cant recover her. She is now stuck in this limbo of not in the

completely non- functional world and and not the typical world and the

worst part is she knows it! This is the part that kills me. I cant

protect from the world. I can't make the kids be friends with her

because her speech is poor and her ability to articulate her thoughts is

so blocked. She asks me everyday when is she going to talk like the

kids, when will she have friends and I dont want to lie. She also is

excited to grow up and have a family and children of her own and my

heart breaks. She is screwed! And there is not a single thing I can do

anymore.

To make matters worse they have just found on her MRI i malformation

which will give her a 90% chance of getting seizures. The could be huge

and they might not be treatable with meds...we wont know till they

happen. I believe in prayer but am now not naive enough to know the

possibility of fully recovering my child is pretty slim. How do I live?

When I thought i could heal her I had hope and now that is stolen from

us I need to come to accept this reality but for some reason I cannot. I

am weak and watching her suffer everyday seems too much for me. I know

intellectually I should be there for her but I don't seem to be able to

pull it together.

I know there are mom's out there with children in the worst possible

conditions and am wondering how you pull it together for child and other

people. I cant even socialize anymore as I am no longer able to fake for

the rest of the people. We do not have other children as we had put our

focus on recovering her thinking we could.

Leigh

March 20, 2012

My son ,too, was in limbo, just like you debscribed with your daughter. He went this shortly after he turned 7...it was a rough, heartbreaking year. I remember he would ask "When will I have a different talk like my friends? He is 9 now, does indeed "have a different talk" and ks a hair'sbreath away from recovery. Please hang in there...even if by your fingernails. Your daughter is rounding a corner. Its not going to be pretty, but there IS a light at the end of the tunnel.

It sounds lime you're experiencing some depression or sheer exhaustion. Either get her or keep her on a good Multi and forget the rest for a while. Just go have fun! You and her! Forget the pressure and stress of the A word for a while and just enjoy being together and doing the things you like best. Bunk school! Go play out in the sun. Break a few rules (if she'll let you) and rest. Please don't forget to take of yourself and don't forget about the things you love. Dont worry about what the doctors say...they dont know their ass from their elbow...if they did, we wouldnt be in this mess. Sunshine, love, forgiveness, fun, and laughter are every bit as important.t as food, water and air.

I don't think this is the time to give up. I think it's time to look at this with new eyes and take a new approach. Something that will be good for both you AND your daughter.

We're right here. : )