new Fw: member

[Guest guest]

From: erikadyan71@... <erikadyan71@...>

Subject: Re: [stop Calling It Autism!] new member

stopcallingitautism

Date: Thursday, June 24, 2010, 12:07 PM

 

Abigail-

Any chance you could post this on the group? That group is more into

chatting about different treatment therapies and experiences!

-Sent on the Sprint® Now Network from my BlackBerry®From: " abigailrose@

sbcglobal. net " <abigailrose@ sbcglobal. net>

Sender: stopcallingitautism @groups. com

Date: Sat, 19 Jun 2010 20:54:45 -0000<stopcallingitautism @groups.

com>Reply stopcallingitautism @groups. com

Subject: [stop Calling It Autism!] new member

 

hi,

i'd like to introduce myself. my name is abigail and my husband and i have two

boys. our youngest, arthur was born with pretty bad silent reflux. we wound up

giving him zantac for six months and prevacid for 4 of those same months. by 6

mos old i went off all dairy as i was breastfeeding and i felt he reacted to it.

at 10 mos old when he started eating wheat i felt he reacted. fussy, even poorer

sleeping than usual. had him allergy tested for allergies/celiac. all came back

normal. i gave him everything to eat. then about one month later he stared

having crazy 4 hour long night wakings, on top of his many many cries in the

night. we had done all vaxes at this point, including flu vaxes. at his 6 mo

dtap he developed a large red bump on his leg that lasted two wks. other than

that, no reactions that i knew of. he started walking at 15 mo old and was very

very verbal and completely connected. at his 15 mo dtap and hib shots he would

up having a severe

reaction. high pitch scream for an hour and a half, went into shock, fever for

7 out of next 9 days, often at 103.5, would't eat or drink hardly at all for 4

days, didn't eat barely for the whole 9. affect severely affected. did not lose

walking talking pointing skills. just became lethargic with ZERO AFFECT. lost

eye contact. after 4 days returned but still no eye contact, no affection.

lowered vitality. lost sparkle. this lasted a few wks. slowly eye contact

returned. 3 wks in, we went GF/CF/soy free/corn free. two and a half months

later his sparkle is largely back, eye contact returned, kisses just slowly

coming back, still sleeps HORRIFICALLY.

it is my deeply held belief that my son had an encephalitic reaction to his

shot. i have been telling the docs that since day one, to no avail. they all

say, where's your lumbar puncture to prove it? i believe my son has healed well

in the face of all this, but it has still been a TERRIFYING ride. and i keep

coming back to, WHY did he react like that??? so i had him tested. a lot of

genova and doc data tests, all ordered by a nutritionist in NJ named peta cohen

who specializes in this field. she approaches things somewhat from a DAN

perspective but she is a chemist and a scientist and likes to do everything

based on labs. so far our labs have shown that the PH in his gut is 5.9 when it

should be 6.8 i believe. he has two bacterial gut infections going on. his stool

samples showed through the roof levels of antimony and high levels of arsenic.

his alletest ELISSA showed that he was IGG allergic to 15 things. his

eosonophils were high, in the allergy

range. my current belief is that the prevacid contributed to autotoxicity as it

slowed his poops down to once a week, and that it also contributed to

maldigestion as it stopped his normal stomach secretions, allowing whole

particles to get into his bloodstream prompting massive allergenic response. in

other words, a leaky gut. all this in my opinion has contributed to a hysterical

immune system that has led to many colds, and food intolerances, and an

encephalitic response to the vaccine. where the heck the antimony and arsenic

fit in i have NO CLUE. are they coming from the vaccines??? my kids sleep on

organic beds with no fire retardant according to the company i purchased them

from.

at this point, i am confused as to how to proceed. my son does not seem at this

point " autistic. " i however know we very clearly entered that world. he has some

gut/blood/brain barrier problem FOR SURE. i just know this, given the totality

of what has gone on. how to proceed now? our nutritionist wants to put him on

tons of supplements to " rebalance " him and help his immune system, and to help

gently chelate the metals. our other DAN doc had already prescribed all the

supps before even doing testing so that made me suspicious and we have not seem

him since. i am eager to do HBOT as i believe it will help him fully fully heal

his brain but i don't want to do that while he is under oxidative stress, which

we have seen from the labs that he is.

i just saw your site recently and thought: WOW!!!!! finally a site for us.

something that makes sense of the whole pie. then i read about dr. goldberg whom

i had never heard of before, even though i am in los angeles. so THANK YOU. (on

that note, i find it helpful that we can discuss doctors and protocols here. esp

if we all believe that this is all medical and disease oriented. perhaps the

kabosh need not be on discussing protocols, only if things get heated, could

there perhaps be a reminder that this is not the point?) perhaps dr. g is our

answer?? but i am torn. the thing makes a lot of sense to me and feels very

real for us. but that said, i feel we also have gotten here by messing with our

son in a lot of non natural ways (zantac, prevacid, vaccines) and all the

traditional docs we have seen have been clueless and offensive and downright

awful to me suggesting i have imagined this whole thing. so dr G putting my kid

potentially on ssri's seems

terrifying, let alone what else he would prescribe. that said, we obviously

have medical issues that need fixing. and somehow, the more natural route of

supps does not feel quite right to me as well. after all, who is to say they

will work here?? and they can be dangerous as well. my husband's family wants us

to go to the UCLA autism clinic but i feel like they will say we are not

autistic and even if they agreed he was on the spectrum, i fear they would just

do OT and other things that are not really my concern right now. am i crazy

here??

i would really appreciate for any of you to weigh in honestly on these topics.

we have already spent countless thousands of dollars, unreimbursed from

insurance who is fighting us, and i just don't have the money to keep trying out

every avenue on my own. since i am finally in a place with you all where i don't

have to convince you that something is wrong with my son, could you please help

me out by sharing your thoughts and experiences so i can help make my next move.

and in response to a previous poster about something else, i am not asking you

to play doctor. just to share with me as parents who have been there, done that.

thank you,

abigail

[Guest guest]

has he ever had his IgE levels checked?  Sometimes high eosinophiles can go

along with hyper-IgE syndrome.  Has he seen an allergist?

________________________________

From: Bill klimas <klimas_bill@...>

Sent: Thu, June 24, 2010 1:56:56 PM

Subject: new Fw: member

 

From: erikadyan71@... <erikadyan71@...>

Subject: Re: [stop Calling It Autism!] new member

stopcallingitautism

Date: Thursday, June 24, 2010, 12:07 PM

 

Abigail-

Any chance you could post this on the group? That group is more into

chatting about different treatment therapies and experiences!

-Sent on the Sprint® Now Network from my BlackBerry®From: " abigailrose@

sbcglobal. net " <abigailrose@ sbcglobal. net>

Sender: stopcallingitautism @groups. com

Date: Sat, 19 Jun 2010 20:54:45 -0000<stopcallingitautism @groups.

com>Replystopcallingitautism @groups. com

Subject: [stop Calling It Autism!] new member

 

hi,

i'd like to introduce myself. my name is abigail and my husband and i have two

boys. our youngest, arthur was born with pretty bad silent reflux. we wound up

giving him zantac for six months and prevacid for 4 of those same months. by 6

mos old i went off all dairy as i was breastfeeding and i felt he reacted to it.

at 10 mos old when he started eating wheat i felt he reacted. fussy, even poorer

sleeping than usual. had him allergy tested for allergies/celiac. all came back

normal. i gave him everything to eat. then about one month later he stared

having crazy 4 hour long night wakings, on top of his many many cries in the

night. we had done all vaxes at this point, including flu vaxes. at his 6 mo

dtap he developed a large red bump on his leg that lasted two wks. other than

that, no reactions that i knew of. he started walking at 15 mo old and was very

very verbal and completely connected. at his 15 mo dtap and hib shots he would

up having a severe

reaction. high pitch scream for an hour and a half, went into shock, fever for 7

out of next 9 days, often at 103.5, would't eat or drink hardly at all for 4

days, didn't eat barely for the whole 9. affect severely affected. did not lose

walking talking pointing skills. just became lethargic with ZERO AFFECT. lost

eye contact. after 4 days returned but still no eye contact, no affection.

lowered vitality. lost sparkle. this lasted a few wks. slowly eye contact

returned. 3 wks in, we went GF/CF/soy free/corn free. two and a half months

later his sparkle is largely back, eye contact returned, kisses just slowly

coming back, still sleeps HORRIFICALLY.

it is my deeply held belief that my son had an encephalitic reaction to his

shot. i have been telling the docs that since day one, to no avail. they all

say, where's your lumbar puncture to prove it? i believe my son has healed well

in the face of all this, but it has still been a TERRIFYING ride. and i keep

coming back to, WHY did he react like that??? so i had him tested. a lot of

genova and doc data tests, all ordered by a nutritionist in NJ named peta cohen

who specializes in this field. she approaches things somewhat from a DAN

perspective but she is a chemist and a scientist and likes to do everything

based on labs. so far our labs have shown that the PH in his gut is 5.9 when it

should be 6.8 i believe. he has two bacterial gut infections going on. his stool

samples showed through the roof levels of antimony and high levels of arsenic.

his alletest ELISSA showed that he was IGG allergic to 15 things. his

eosonophils were high, in the allergy

range. my current belief is that the prevacid contributed to autotoxicity as it

slowed his poops down to once a week, and that it also contributed to

maldigestion as it stopped his normal stomach secretions, allowing whole

particles to get into his bloodstream prompting massive allergenic response. in

other words, a leaky gut. all this in my opinion has contributed to a hysterical

immune system that has led to many colds, and food intolerances, and an

encephalitic response to the vaccine. where the heck the antimony and arsenic

fit in i have NO CLUE. are they coming from the vaccines??? my kids sleep on

organic beds with no fire retardant according to the company i purchased them

from.

at this point, i am confused as to how to proceed. my son does not seem at this

point " autistic. " i however know we very clearly entered that world. he has some

gut/blood/brain barrier problem FOR SURE. i just know this, given the totality

of what has gone on. how to proceed now? our nutritionist wants to put him on

tons of supplements to " rebalance " him and help his immune system, and to help

gently chelate the metals. our other DAN doc had already prescribed all the

supps before even doing testing so that made me suspicious and we have not seem

him since. i am eager to do HBOT as i believe it will help him fully fully heal

his brain but i don't want to do that while he is under oxidative stress, which

we have seen from the labs that he is.

i just saw your site recently and thought: WOW!!!!! finally a site for us.

something that makes sense of the whole pie. then i read about dr. goldberg whom

i had never heard of before, even though i am in los angeles. so THANK YOU. (on

that note, i find it helpful that we can discuss doctors and protocols here. esp

if we all believe that this is all medical and disease oriented. perhaps the

kabosh need not be on discussing protocols, only if things get heated, could

there perhaps be a reminder that this is not the point?) perhaps dr. g is our

answer?? but i am torn. the thing makes a lot of sense to me and feels very

real for us. but that said, i feel we also have gotten here by messing with our

son in a lot of non natural ways (zantac, prevacid, vaccines) and all the

traditional docs we have seen have been clueless and offensive and downright

awful to me suggesting i have imagined this whole thing. so dr G putting my kid

potentially on ssri's seems

terrifying, let alone what else he would prescribe. that said, we obviously have

medical issues that need fixing. and somehow, the more natural route of supps

does not feel quite right to me as well. after all, who is to say they will work

here?? and they can be dangerous as well. my husband's family wants us to go to

the UCLA autism clinic but i feel like they will say we are not autistic and

even if they agreed he was on the spectrum, i fear they would just do OT and

other things that are not really my concern right now. am i crazy here??

i would really appreciate for any of you to weigh in honestly on these topics.

we have already spent countless thousands of dollars, unreimbursed from

insurance who is fighting us, and i just don't have the money to keep trying out

every avenue on my own. since i am finally in a place with you all where i don't

have to convince you that something is wrong with my son, could you please help

me out by sharing your thoughts and experiences so i can help make my next move.

and in response to a previous poster about something else, i am not asking you

to play doctor. just to share with me as parents who have been there, done that.

thank you,

abigail