Re:Herpes infection, hyperacusis, brain inflammation - Marcia

[Guest guest]

,

It all went away as we fixed the immune system. But it took years. It is

so hard to be patient when your kid is hurting. I remember the bells at

school were awful for . I told him to cover his ears when they went

off. I was trying to give him some control over a horrible situation. Over

time it all disappeared. I just came back from packing up my son. One of

his roommates was undiagnosed but definitely on the spectrum. He is going

on to get a doctorate at Purdue. He was " weird " but I loved him. What a

character who is going to definitely make it. We all don't fit in the same

way. There is hope for all of them.

Marcia

[Guest guest]

Thank you Marcia. you are an inspiration to moms like me who are starting out

on this road and please let know he is an inspiration to kids like my son

who's 6. 

 

I look forward to seeing him heal and especially for the noise sensitivty to go

away. Makes me sad to see him curl up and literally start shaking when the

noises start to overwhelm him.

 

My dream is to see  go off to college one day too.  Lately he's

showing a huge interest in art and has been drawing up a storm since he's been

on Valtrex. It's like a switch went on. The other night he

drew this detailed scene of Captain Hook and Pan in a swordfight with

Tinker Bell flying about.. squibbles yes, but they were masterpieces in my book

: ) So at least I know there's a bright, creative little kid in there that

needs to be brought out.

 

I definitely feel there is hope for our kids. 

 

 

From: and Marcia Hinds <hindssite@...>

Subject: Re:Herpes infection, hyperacusis, brain inflammation - Marcia

sailcharters@...,

Date: Wednesday, June 9, 2010, 10:33 AM

 

,

It all went away as we fixed the immune system. But it took years. It is

so hard to be patient when your kid is hurting. I remember the bells at

school were awful for . I told him to cover his ears when they went

off. I was trying to give him some control over a horrible situation. Over

time it all disappeared. I just came back from packing up my son. One of

his roommates was undiagnosed but definitely on the spectrum. He is going

on to get a doctorate at Purdue. He was " weird " but I loved him. What a

character who is going to definitely make it. We all don't fit in the same

way. There is hope for all of them.

Marcia

[Guest guest]

Marcia! Wow is going for his doctorate! You be proud, this is your

accomplishment too.

My daughter had hyperacusis,too. Once we did , we no longer have that

problem. When you get your child healthy their sensory issues disappear. My

daughter's sensory issues are totally gone. This year at her IEP they were

trying to figure out if she needed " sensory room time " for a sensory diet and

they all unianimously agreed it was totally unnecessary. That felt so good.

And Marcia, when I first started walking this journey, I read your posts and

they gave me so much hope. I am on the other side and its a dream cometrue!

Thanks for giving me hope!

-

>

> ,

>

> It all went away as we fixed the immune system. But it took years. It is

> so hard to be patient when your kid is hurting. I remember the bells at

> school were awful for . I told him to cover his ears when they went

> off. I was trying to give him some control over a horrible situation. Over

> time it all disappeared. I just came back from packing up my son. One of

> his roommates was undiagnosed but definitely on the spectrum. He is going

> on to get a doctorate at Purdue. He was " weird " but I loved him. What a

> character who is going to definitely make it. We all don't fit in the same

> way. There is hope for all of them.

>

> Marcia

>

>

>

>

[Guest guest]

Hi ,

 

Glad to hear you daughters sensory issues have diminished since starting . 

We just started the protocol.. did your daughters test show a herpes infection

or  other viral issues?.Also did the doctor put her on an SSRI? My

understanding is that SSRI can improve temporal lobe blood flow?  if so did it

help? 

 

 

PS. the sensory issues are a bummer.. my son couldn't participate in his

Kindergarten graduation today due to the noises (clapping, talking, music) in

the auditorium.

From: <jlhank80@...>

Subject: Re:Herpes infection, hyperacusis, brain inflammation - Marcia

Date: Thursday, June 10, 2010, 9:45 AM

 

Marcia! Wow is going for his doctorate! You be proud, this is your

accomplishment too.

My daughter had hyperacusis,too. Once we did , we no longer have that

problem. When you get your child healthy their sensory issues disappear. My

daughter's sensory issues are totally gone. This year at her IEP they were

trying to figure out if she needed " sensory room time " for a sensory diet and

they all unianimously agreed it was totally unnecessary. That felt so good.

And Marcia, when I first started walking this journey, I read your posts and

they gave me so much hope. I am on the other side and its a dream cometrue!

Thanks for giving me hope!

-

>

> ,

>

> It all went away as we fixed the immune system. But it took years. It is

> so hard to be patient when your kid is hurting. I remember the bells at

> school were awful for . I told him to cover his ears when they went

> off. I was trying to give him some control over a horrible situation. Over

> time it all disappeared. I just came back from packing up my son. One of

> his roommates was undiagnosed but definitely on the spectrum. He is going

> on to get a doctorate at Purdue. He was " weird " but I loved him. What a

> character who is going to definitely make it. We all don't fit in the same

> way. There is hope for all of them.

>

> Marcia

>

>

>

>

[Guest guest]

Jen,

It is not going for his doctorate but rather his roommate who is

undiagnosed but I think is on the spectrum. He is a wonderful kid who I

adore.

Marcia

[Guest guest]

, My daughter had high HHV-6 titers. Her bloodwork revealed immune

dysfunction but her biggest issue by far was and is her allergies. We did do

the SSRI temporarily and she went nuts! Most kids are not this way but for us

this was because there was still too much inflammation from her allergies going

on so we had to go another route for awhile and stop the SSRI. However not all

children are this way. But we had the right people leading us the right way.

You have to do whatever it takes to cool down inflammation.

You can email me personally if you like

-

> >

> > ,

> >

> > It all went away as we fixed the immune system. But it took years. It is

> > so hard to be patient when your kid is hurting. I remember the bells at

> > school were awful for . I told him to cover his ears when they went

> > off. I was trying to give him some control over a horrible situation. Over

> > time it all disappeared. I just came back from packing up my son. One of

> > his roommates was undiagnosed but definitely on the spectrum. He is going

> > on to get a doctorate at Purdue. He was " weird " but I loved him. What a

> > character who is going to definitely make it. We all don't fit in the same

> > way. There is hope for all of them.

> >

> > Marcia

> >

> >

> >

> >