Just Joined Yesterday (Long Email)

[Guest guest]

Hello everyone,

I just found and joined this list last night. I have a 3 1/2

yo daughter who has cerebral palsy, periventricular leukomalacia

(PVL) and hasn't been 'officially' diagnosed with autism, but I am

sure she has it. She has the classic signs, and it seems each day

she becomes more consumed with being in her own world. It has been

very difficult watching her 'disappear' right before my eyes.

Her symptoms began moreso around 24 months. It began with

diet changes. She used to eat anything you'd put in front of her, but

right around her 2nd birthday, that all changed. She refused

everything but maybe 5 foods, and preferred a liquid diet. A year

and a half later, she is even more picky, if you can believe that.

Sometimes she will go through several weeks where she refuses even

those foods! It's a challenge to keep her hydrated as well.

She has sensory difficulties, and has an issue with loud

noises. She is obsessed with Sesame Street, and although she is

'functionally' non-verbal, she will go around all day reciting things

from Sesame Street while staring off at the wall or up at the

ceiling. She spins in circles on her knees on the floor for 10+

minutes at a time. She has a 'shuffling' obsession. She takes her

mini-tea plates from her tea set and shuffles them over and over. She

will do this with graham crackers, coasters, cards, anything that is

mostly flat and shuffleable! She also is very intrigued by the

ceiling fan (any ceiling fan) and will hand flap in front of it.

I could go on.... But I wont bore you. :-) I'm really

confused about why her school doesn't seem to be seeing these

symptoms there. She is in a special needs preschool class due to her

cerebral palsy, PVL and speech. She has spastic diplegia CP, which

mainly affects her leg muscles. She wears AFO braces on her legs and

is just learning to walk independently in them. She is doing very

well with her walking.

I have mentioned my concerns to the school and they don't

see what I report she does. The only thing they see is her social

difficulties. She has a social skills goal in her IEP. She does not

play with other children, nor does she seem interested in other

children. She plays by herself in the classroom and does things like

stacking pegs over and over, and yet no one feels it's a concern.

It's repetitive behavior.

I have noticed at private therapy (I take her to private PT,

SLP, and OT) she doesn't do a lot of the repetitive behaviors or

stimming that she does at home. Why would this be? I have thought

that perhaps it is because home is less structured than those

settings. Or maybe she is bored? I do a lot of activities with her

(mostly fine motor things). At home she just wants to play with her

toys that talk or play music and she will have them all going at

once, almost like she's conducting a symphony.

Does anyone else have girls who seem to be more autistic at

home than out in public or at school?

My daughter has had 120 hyperbaric oxygen treatments to date.

She had a hair analysis test done which showed very high levels of

copper and aluminum. They said she has a copper toxicity. Her

sodium/potassium ratio is inverted. Her adrenals aren't working

properly due to these things (per the report that came with the

analysis) so we put her on all the suggested supplements and tried

doing the diet change as they suggested. The diet didn't go so well,

and after 4 days of her not eating, I gave in. So I've just done

the supplements. I need to have her analysis redone to see if the

copper and aluminum have been eliminated.

I have her on Liver Life by BioRay to help eliminate the

toxins and cleanse the liver. I have her on cod liver oil by Nordic

Naturals. She's also on a liquid multi-vitamin by Animal Parade.

I've tried Super Nu Thera back in November, and while she did better

on it, it seemed to give her thrush in the mouth. She was very yeasty.

I've ordered the Yasko genetics test, and will be completing

that and sending it in shortly.

So, I am now in pursuit of a reputable DAN doctor here in

Indiana (Indpls). If anyone knows of any in my area, please contact

me.

Thank you so much and I'm so excited to have found this list!

Sincerely,

from Indpls.

[Guest guest]

I wish I knew more about the dx's your daughter has. I can only comment

from my own prespective: my daughter is 12 and she did alot of the things

your daughter does and many more. Anyway, I think that you are on the right

track, the school doesn't see as many things as you do because they are most

likely very structured and re direct quickly. Have her evaluated and then

send the bill to the school. I know in NY you can do this, you can always

can the spec ed office at your school district and tell them your concerns

and request they test her.

Kayla likes to rock and we know this de stresses her but we don't want her

to do it all day so we will re direct her. Have you tried that?

There are so many people on this board who will give you so much great

advise. Welcome.

T-

>

> Hello everyone,

> I just found and joined this list last night. I have a 3 1/2

> yo daughter who has cerebral palsy, periventricular leukomalacia

> (PVL) and hasn't been 'officially' diagnosed with autism, but I am

> sure she has it. She has the classic signs, and it seems each day

> she becomes more consumed with being in her own world. It has been

> very difficult watching her 'disappear' right before my eyes.

> Her symptoms began moreso around 24 months. It began with

> diet changes. She used to eat anything you'd put in front of her, but

> right around her 2nd birthday, that all changed. She refused

> everything but maybe 5 foods, and preferred a liquid diet. A year

> and a half later, she is even more picky, if you can believe that.

> Sometimes she will go through several weeks where she refuses even

> those foods! It's a challenge to keep her hydrated as well.

> She has sensory difficulties, and has an issue with loud

> noises. She is obsessed with Sesame Street, and although she is

> 'functionally' non-verbal, she will go around all day reciting things

> from Sesame Street while staring off at the wall or up at the

> ceiling. She spins in circles on her knees on the floor for 10+

> minutes at a time. She has a 'shuffling' obsession. She takes her

> mini-tea plates from her tea set and shuffles them over and over. She

> will do this with graham crackers, coasters, cards, anything that is

> mostly flat and shuffleable! She also is very intrigued by the

> ceiling fan (any ceiling fan) and will hand flap in front of it.

> I could go on.... But I wont bore you. :-) I'm really

> confused about why her school doesn't seem to be seeing these

> symptoms there. She is in a special needs preschool class due to her

> cerebral palsy, PVL and speech. She has spastic diplegia CP, which

> mainly affects her leg muscles. She wears AFO braces on her legs and

> is just learning to walk independently in them. She is doing very

> well with her walking.

> I have mentioned my concerns to the school and they don't

> see what I report she does. The only thing they see is her social

> difficulties. She has a social skills goal in her IEP. She does not

> play with other children, nor does she seem interested in other

> children. She plays by herself in the classroom and does things like

> stacking pegs over and over, and yet no one feels it's a concern.

> It's repetitive behavior.

> I have noticed at private therapy (I take her to private PT,

> SLP, and OT) she doesn't do a lot of the repetitive behaviors or

> stimming that she does at home. Why would this be? I have thought

> that perhaps it is because home is less structured than those

> settings. Or maybe she is bored? I do a lot of activities with her

> (mostly fine motor things). At home she just wants to play with her

> toys that talk or play music and she will have them all going at

> once, almost like she's conducting a symphony.

> Does anyone else have girls who seem to be more autistic at

> home than out in public or at school?

> My daughter has had 120 hyperbaric oxygen treatments to date.

> She had a hair analysis test done which showed very high levels of

> copper and aluminum. They said she has a copper toxicity. Her

> sodium/potassium ratio is inverted. Her adrenals aren't working

> properly due to these things (per the report that came with the

> analysis) so we put her on all the suggested supplements and tried

> doing the diet change as they suggested. The diet didn't go so well,

> and after 4 days of her not eating, I gave in. So I've just done

> the supplements. I need to have her analysis redone to see if the

> copper and aluminum have been eliminated.

> I have her on Liver Life by BioRay to help eliminate the

> toxins and cleanse the liver. I have her on cod liver oil by Nordic

> Naturals. She's also on a liquid multi-vitamin by Animal Parade.

> I've tried Super Nu Thera back in November, and while she did better

> on it, it seemed to give her thrush in the mouth. She was very yeasty.

> I've ordered the Yasko genetics test, and will be completing

> that and sending it in shortly.

> So, I am now in pursuit of a reputable DAN doctor here in

> Indiana (Indpls). If anyone knows of any in my area, please contact

> me.

> Thank you so much and I'm so excited to have found this list!

> Sincerely,

> from Indpls.

>

>

[Guest guest]

FORGOT: Wanted to add also that my daughter is doing hippotherapy

(since age 2) which helps with her sensory issues I think. She does

this once a week. She also receives cranialsacral therapy once a

week, chiropractic care 1x/month. I've also been doing an ionic foot

bath with her twice a week to help eliminate toxins. One of my

friends in South Carolina has a DAN dr. who recommended the foot bath

for her 4 y/o son with autism.

Thanks everyone!

>Hello everyone,

> I just found and joined this list last night. I have a 3 1/2

>yo daughter who has cerebral palsy, periventricular leukomalacia

>(PVL) and hasn't been 'officially' diagnosed with autism, but I am

>sure she has it. She has the classic signs, and it seems each day

>she becomes more consumed with being in her own world. It has been

>very difficult watching her 'disappear' right before my eyes.

> Her symptoms began moreso around 24 months. It began with

>diet changes. She used to eat anything you'd put in front of her, but

>right around her 2nd birthday, that all changed. She refused

>everything but maybe 5 foods, and preferred a liquid diet. A year

>and a half later, she is even more picky, if you can believe that.

>Sometimes she will go through several weeks where she refuses even

>those foods! It's a challenge to keep her hydrated as well.

> She has sensory difficulties, and has an issue with loud

>noises. She is obsessed with Sesame Street, and although she is

>'functionally' non-verbal, she will go around all day reciting things

>from Sesame Street while staring off at the wall or up at the

>ceiling. She spins in circles on her knees on the floor for 10+

>minutes at a time. She has a 'shuffling' obsession. She takes her

>mini-tea plates from her tea set and shuffles them over and over. She

>will do this with graham crackers, coasters, cards, anything that is

>mostly flat and shuffleable! She also is very intrigued by the

>ceiling fan (any ceiling fan) and will hand flap in front of it.

> I could go on.... But I wont bore you. :-) I'm really

>confused about why her school doesn't seem to be seeing these

>symptoms there. She is in a special needs preschool class due to her

>cerebral palsy, PVL and speech. She has spastic diplegia CP, which

>mainly affects her leg muscles. She wears AFO braces on her legs and

>is just learning to walk independently in them. She is doing very

>well with her walking.

> I have mentioned my concerns to the school and they don't

>see what I report she does. The only thing they see is her social

>difficulties. She has a social skills goal in her IEP. She does not

>play with other children, nor does she seem interested in other

>children. She plays by herself in the classroom and does things like

>stacking pegs over and over, and yet no one feels it's a concern.

>It's repetitive behavior.

> I have noticed at private therapy (I take her to private PT,

>SLP, and OT) she doesn't do a lot of the repetitive behaviors or

>stimming that she does at home. Why would this be? I have thought

>that perhaps it is because home is less structured than those

>settings. Or maybe she is bored? I do a lot of activities with her

>(mostly fine motor things). At home she just wants to play with her

>toys that talk or play music and she will have them all going at

>once, almost like she's conducting a symphony.

> Does anyone else have girls who seem to be more autistic at

>home than out in public or at school?

> My daughter has had 120 hyperbaric oxygen treatments to date.

>She had a hair analysis test done which showed very high levels of

>copper and aluminum. They said she has a copper toxicity. Her

>sodium/potassium ratio is inverted. Her adrenals aren't working

>properly due to these things (per the report that came with the

>analysis) so we put her on all the suggested supplements and tried

>doing the diet change as they suggested. The diet didn't go so well,

>and after 4 days of her not eating, I gave in. So I've just done

>the supplements. I need to have her analysis redone to see if the

>copper and aluminum have been eliminated.

> I have her on Liver Life by BioRay to help eliminate the

>toxins and cleanse the liver. I have her on cod liver oil by Nordic

>Naturals. She's also on a liquid multi-vitamin by Animal Parade.

>I've tried Super Nu Thera back in November, and while she did better

>on it, it seemed to give her thrush in the mouth. She was very yeasty.

> I've ordered the Yasko genetics test, and will be completing

>that and sending it in shortly.

> So, I am now in pursuit of a reputable DAN doctor here in

>Indiana (Indpls). If anyone knows of any in my area, please contact

>me.

> Thank you so much and I'm so excited to have found this list!

>Sincerely,

> from Indpls.

>

>

[Guest guest]

The best idea for a diagnosis in my mind is to take her to a pediatric

psychiatrist. Then not only do you get a diagnosis, he may well help with meds.

wrote: Thank you T for your

response.

Who would I take her to for an evaluation? Some kind of psychologist?

If I asked the school to evaluate her as well, would that be by a

school psychologist?

Thanks!

>

>

>I wish I knew more about the dx's your daughter has. I can only comment

>from my own prespective: my daughter is 12 and she did alot of the things

>your daughter does and many more. Anyway, I think that you are on the right

>track, the school doesn't see as many things as you do because they are most

>likely very structured and re direct quickly. Have her evaluated and then

>send the bill to the school. I know in NY you can do this, you can always

>can the spec ed office at your school district and tell them your concerns

>and request they test her.

>

>Kayla likes to rock and we know this de stresses her but we don't want her

>to do it all day so we will re direct her. Have you tried that?

>

>There are so many people on this board who will give you so much great

>advise. Welcome.

>

>T-

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

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[Guest guest]

With Kayla, I had the school evaluate her and I had an evaluation done

myself. I wanted a second opinion (blind). The one I had done was with a

developmental pediatrician. Then a child psychologist. The schools usually

use a child psychologist.

With my son the school had him tested and they failed him. I had him tested

with child psychologist and gave the bill to the school. They took the

testing and used it to help my son and they paid me back the money.

I think if your gut tells you something is up, then something is up. If you

have the resources available take advantage of them.

My daughter was not dx'd until she was almost 4.5. She was non verbal but

by the time she was 5 she was talking the dx got her the therapy she

needed. She started communicating almost immediately with PECs. It was an

amazing journey.

Are you located in SC? I am moving there soon.

T-

>

> Thank you T for your response.

> Who would I take her to for an evaluation? Some kind of psychologist?

> If I asked the school to evaluate her as well, would that be by a

> school psychologist?

> Thanks!

>

>

> >

> >

> >I wish I knew more about the dx's your daughter has. I can only comment

> >from my own prespective: my daughter is 12 and she did alot of the things

> >your daughter does and many more. Anyway, I think that you are on the

> right

> >track, the school doesn't see as many things as you do because they are

> most

> >likely very structured and re direct quickly. Have her evaluated and then

> >send the bill to the school. I know in NY you can do this, you can always

> >can the spec ed office at your school district and tell them your

> concerns

> >and request they test her.

> >

> >Kayla likes to rock and we know this de stresses her but we don't want

> her

> >to do it all day so we will re direct her. Have you tried that?

> >

> >There are so many people on this board who will give you so much great

> >advise. Welcome.

> >

> >T-

>

>

[Guest guest]

Welcome !

I think you are doing a lot for your daughter. It is wonderful that

you have pursued so much so fast. To me, it is a wonder how fast

things have progressed since was diagnosed 12 years ago.

I am curious, How well do you think the HBOT has worked? Do you give

your daughter Methyl B12 shots?

Shanna ('s mom)

> My daughter has had 120 hyperbaric oxygen treatments to date.

> She had a hair analysis test done which showed very high levels of

> copper and aluminum. They said she has a copper toxicity. Her

> sodium/potassium ratio is inverted. Her adrenals aren't working

> properly due to these things (per the report that came with the

> analysis) so we put her on all the suggested supplements and tried

> doing the diet change as they suggested. The diet didn't go so

well,

> and after 4 days of her not eating, I gave in. So I've just done

> the supplements. I need to have her analysis redone to see if the

> copper and aluminum have been eliminated.

> I have her on Liver Life by BioRay to help eliminate the

> toxins and cleanse the liver. I have her on cod liver oil by Nordic

> Naturals. She's also on a liquid multi-vitamin by Animal Parade.

> I've tried Super Nu Thera back in November, and while she did

better

> on it, it seemed to give her thrush in the mouth. She was very

yeasty.

> I've ordered the Yasko genetics test, and will be completing

> that and sending it in shortly.

> So, I am now in pursuit of a reputable DAN doctor here in

> Indiana (Indpls). If anyone knows of any in my area, please

contact

> me.

> Thank you so much and I'm so excited to have found this list!

> Sincerely,

> from Indpls.

>

[Guest guest]

>> So, I am now in pursuit of a reputable DAN doctor here in

>> Indiana (Indpls). If anyone knows of any in my area, please

> contact

>> me.

>> Thank you so much and I'm so excited to have found this list!

>> Sincerely,

>> from Indpls.

>>

Hi ,

I've heard some good things about Lou Hulseman.

Lou Hulseman, M.D.

Fall Creek Family Medicine

9560 E 59th Street

Indianapolis, IN 46216

Telephone:

Fax:

Email: mhulseman@...

[Guest guest]

>

> Does anyone else have girls who seem to be more autistic at

> home than out in public or at school?

>

YES! Absolutely. What seems to happen pretty frequently is that kids

put so much energy into being " on " at school that when they get home,

they need that stimming down time to unwind. Something fun and

relaxing. Like my NT kiddo wants to come home and watch TV for a

while when he gets home. After a full day of school, he needs down

time. It's the same thing.

I recommend looking for a ped psychiatrist or a developmental

pediatrician to pursue a diagnosis.

Amnesty

[Guest guest]

, welcome. I have 3 girls 10, 8, & 5, my 8 yr old has autism.

As to why the school doesn't notice, it was the same way with my

daughter. I'm of the opinion if they aren't behavior problems the

school isn't going to recognize it or want to. Mine was one who wasn't

hyper, pretty much just laid there. And, I think having a diagnosis

already tends to blind them. I'd bet they're blaming most of it on her

cerebral palsy, but I could be wrong.

Welcome, I admire all the stuff you've done so far. Did you by chance

store her cord blood? I'm corresponding with a mom whose son recovered

from CP after getting his own cord blood, pretty impressive stuff. She

just won the primary election for state legislature in Illinois,

Schneider.

Debi