Re: Please help me, I'm panicking.-

[Guest guest]

,

Do you know this womans email id or does she have a blog or website where she can be contacted? I have a friend with a DS daughter. This might be helpful for him.

Thanks,

Subject: Re: Please help me, I'm panicking.To: mb12valtrex Date: Friday, December 23, 2011, 7:38 PM

I agree with you Channa. When my son was 10 months old we were told by specialists that he will be blind, deaf, and who knows what else because when I was hearing all that I close my ears, denied all that they were saying and pray and ask God for his healing power and for guidance to help my son while I wait to his appointed day of full recovery. My son is ten years old now. He sees and hears normally. He is improving very slowly, but improving. He is happy and fills my days with love, kisses and hugs. We all feel that horrible pain you are going through, in one way or another we all have felt it. I do have bad days of not knowing what to do, I cry and pray and somehow God gives me peace and strength to keep going. Don't give up hope and know that God is in control and nothing is impossible for him. I also believe He made our bodies capable of healing.In this group there was a you tube of a neurologist that said that

doctors forget to mention that genes can be turn on and off. Who can say that chromosomes can do the same?I know the case of a down syndrome girl in Spain. The mother never gave up and help her daughter. The girl is a woman now, she is a teacher and a ballerina, and her features has change that you could not see that she had down syndrome as a child. Like Channa said there is nothing write in stone or for me in iron.Love and prayers for all our children and parents

Subject: Re: Please help me, I'm panicking.To: "mb12valtrex " <mb12valtrex >Date: Friday, December 23, 2011, 1:52 AM

I have so many things to say to that I dont even know where to begin...ok first of all...let me say that my personal belief is nothing is written in stone...what does that mean part of a chromosone missing....i mean i know what that means...but what does that really mean?

i think if we all got tested we could find some cromosone missing in all of us....docters just love to look smart point their finger at how wise they are with this gene and that gene....do you know your body is capable of healing everything including our genes?

why cant we change our chromosones? says who? people are being recovered from AIDS people come back from the dead and many more.incurable things....the only limits we have are those we place on ourselves...if your child knows you believe in this stupid label he will follow you because he loves you and will obey what you believe about him!

instead pray over your son...ask God to place miracles over him!

these stupid diagnoses that docters give....how wrong have they been thruout time??

what about the missing gene in these docters souls....shame on them! who the hell are they? what do they know?

aarrr! I promised i would do no more docter bashing...but oh if I could just hit a couple of them and get away with it....sigh..

anyways im regressing...but this is my message to you....believe in God...the healer of all things....believe in miracles....

To: mb12valtrex Sent: Thursday, December 22, 2011 4:20 PMSubject: Please help me, I'm panicking.

We took my ds to see a neurologist for the first time yesterday. He's six. We took him as part of an autism clinic where he's seen multiple specialists (genetics, endocrinology, gastroenterolgy, and now nuerology). The doctor informs us that recent results from a genetics appointment we had about six weeks ago had come in, and she needed to call the geneticist to understand it better. When she comes back in the room she says my ds has a deletion on the 5q11.2 chromosome related to the NCUFS4 gene. She dawdles around throwing out huge words I couldn't understand, but some I picked out were malignant, mitochondrial, and metobolic. I plainly asked her if this is a scary thing we need to worry about and she just said we'd have to talk with the geneticist, and that he wants her to take more blood to do another genetics test to further investigate. I asked for a copy of the report, which I of course read right away. The first line says there is a "loss"

on the 5q11.2 chromosome, but the break point has not been identified. The description goes on to talk about hearing loss, vision loss, and "lethality within the first decade of life". I freaked out of course and called to talk with the genetic counselor, since the dr was out. He says that the test only shows that he has a deletion of one of the chromosomes, not both. He gives me all these crazy analogies about each of us having two pairs of each gene, blah, blah, blah. That mitochondria provide energy to our cells and organs, and when one link in the chain isn't working than the whole system can be negatively affected. When I asked him if my son was going to die he just says there's nothing in this test that tells me that is going to happen. That further investigation is necessary to determine how well the other gene he has at that location is functioning. Everything I'm reading is scaring the crap out of me and I can't understand any of it for sure.

Has anyone ever heard of this, dealt with this, etc. I realize this mutation could have caused his asd, but is possible that will be the end of the damage done? Or, is it inevitable that something terrible is going to happen to my baby. Please help me!!!!

[Guest guest]

Hi Navina,I don't have any e-mail for this woman. I know about her and her daughter from a TV report I saw many years ago. There is this article on a man with DS from 2009 that he also became a teacher and he is teaching in Madrid. http://ssindromededown.blogspot.com/2009/03/primer-titulado-universitario-con.html. I also know of The Institute that helps children with brain injuries that has help a lot of children with DS. The doctor's name is Glenn Doman and he has several books like this one What to do about your brain injure child by Glenn Doman. This one is an introduction about how he realize that the traditional approach did not help victims of stroke, CP, etc., He has another one with more information on stages, exercesies and goals to help the child move to the next level.They have a web site with lots of info

http://www.iahp.org/I hope this helps

Subject: Re: Please help me, I'm panicking.To: mb12valtrex Date: Friday, December 23, 2011, 7:38 PM

I agree with you Channa. When my son was 10 months old we were told by specialists that he will be blind, deaf, and who knows what else because when I was hearing all that I close my ears, denied all that they were saying and pray and ask God for his healing power and for guidance to help my son while I wait to his appointed day of full recovery. My son is ten years old now. He sees and hears normally. He is improving very slowly, but improving. He is happy and fills my days with love, kisses and hugs. We all feel that horrible pain you are going through, in one way or another we all have felt it. I do have bad days of not knowing what to do, I cry and pray and somehow God gives me peace and strength to keep going. Don't give up hope and know that God is in control and nothing is impossible for him. I also believe He made our bodies capable of healing.In this group there was a you tube of a neurologist that said that

doctors forget to mention that genes can be turn on and off. Who can say that chromosomes can do the same?I know the case of a down syndrome girl in Spain. The mother never gave up and help her daughter. The girl is a woman now, she is a teacher and a ballerina, and her features has change that you could not see that she had down syndrome as a child. Like Channa said there is nothing write in stone or for me in iron.Love and prayers for all our children and parents

Subject: Re: Please help me, I'm panicking.To: "mb12valtrex " <mb12valtrex >Date: Friday, December 23, 2011, 1:52 AM

I have so many things to say to that I dont even know where to begin...ok first of all...let me say that my personal belief is nothing is written in stone...what does that mean part of a chromosone missing....i mean i know what that means...but what does that really mean?

i think if we all got tested we could find some cromosone missing in all of us....docters just love to look smart point their finger at how wise they are with this gene and that gene....do you know your body is capable of healing everything including our genes?

why cant we change our chromosones? says who? people are being recovered from AIDS people come back from the dead and many more.incurable things....the only limits we have are those we place on ourselves...if your child knows you believe in this stupid label he will follow you because he loves you and will obey what you believe about him!

instead pray over your son...ask God to place miracles over him!

these stupid diagnoses that docters give....how wrong have they been thruout time??

what about the missing gene in these docters souls....shame on them! who the hell are they? what do they know?

aarrr! I promised i would do no more docter bashing...but oh if I could just hit a couple of them and get away with it....sigh..

anyways im regressing...but this is my message to you....believe in God...the healer of all things....believe in miracles....

To: mb12valtrex Sent: Thursday, December 22, 2011 4:20 PMSubject: Please help me, I'm panicking.

We took my ds to see a neurologist for the first time yesterday. He's six. We took him as part of an autism clinic where he's seen multiple specialists (genetics, endocrinology, gastroenterolgy, and now nuerology). The doctor informs us that recent results from a genetics appointment we had about six weeks ago had come in, and she needed to call the geneticist to understand it better. When she comes back in the room she says my ds has a deletion on the 5q11.2 chromosome related to the NCUFS4 gene. She dawdles around throwing out huge words I couldn't understand, but some I picked out were malignant, mitochondrial, and metobolic. I plainly asked her if this is a scary thing we need to worry about and she just said we'd have to talk with the geneticist, and that he wants her to take more blood to do another genetics test to further investigate. I asked for a copy of the report, which I of course read right away. The first line says there is a "loss"

on the 5q11.2 chromosome, but the break point has not been identified. The description goes on to talk about hearing loss, vision loss, and "lethality within the first decade of life". I freaked out of course and called to talk with the genetic counselor, since the dr was out. He says that the test only shows that he has a deletion of one of the chromosomes, not both. He gives me all these crazy analogies about each of us having two pairs of each gene, blah, blah, blah. That mitochondria provide energy to our cells and organs, and when one link in the chain isn't working than the whole system can be negatively affected. When I asked him if my son was going to die he just says there's nothing in this test that tells me that is going to happen. That further investigation is necessary to determine how well the other gene he has at that location is functioning. Everything I'm reading is scaring the crap out of me and I can't understand any of it for sure.

Has anyone ever heard of this, dealt with this, etc. I realize this mutation could have caused his asd, but is possible that will be the end of the damage done? Or, is it inevitable that something terrible is going to happen to my baby. Please help me!!!!