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Posted
Posted

, Were you referred to this Dr. by the other Dr.'s you speak

of? I have had the same problem with Dr.'s and I know oh to well

changing Dr's is not always an option.I would call the Dr. that

referred me to this Dr. and let them no that this Dr. did nothing.Ask

the pumo to call an allergist they personally know and explain your

situation with your child.See if you can get a copy of the test

results from this allergist to take to the next allergist.I took my

son for allergery testing when he was small and yes they can give

prescribe for you something that will help the allergies better than

other the counter meds. I was just typing a letter to NDSS if they

want to do something constructive they need to make the medical

society more aware of how we and are children are treated from

medical Dr.'s.Like you said as if our children do not matter.You have

to be persistant and even that does not always get you somewhere.

Cyndi b

>

> Hi, my name is and my daughter is , she is almost

5 years

> old. She has Ds and ASD. I read everything but do not post very

much (I

> think I will make up for that in this long post) but I just need to

vent

> before I explode and I figure that you all are about the only ones

in my

> life right now that can maybe understand what I am going through.

A little

> background. was born at 680 grams and 12.4 inches long,

with that

> comes multiple medical issues. However I keep getting well I think

she will

> grow out of (insert medical problem here) next year when she gets

bigger.

> Well that has been every year since she was born. She eats NOTHING

by mouth

> due to numerous medical issues, each one compounding the next. I

think I

> have seen almost every type of doctor known to Children's Hospital

except 3

> different kinds. This last one is the one the broke the camels

back so to

> speak. We were sent to an allergist. I have the first appointment

and of

> course the doctor is 45 minutes late (ha ha) He then walks in and

proceeds

> to tell me my daughter has Ds, one day I swear I am going to act all

> surprised and yell at the doctor and deny that she does, anyways..

He then

> tells me her asthma needs to get under control and I tell him I

know saw

> pulmo 2 weeks ago and we are working on that. He then says he does

not

> believe she has allergies that it is immune problems. I tell him as

> politely as I can that I am there for allergy testing that ENT,

pulmo and

> specials needs wants her tested. He then proceeds to tell me what

blood

> tests I need to have done for immune testing. I again tell him why

I am

> there to see an ALLERGIST to get ALLERGY testing. He then says.

well since

> you are here it can not hurt to test her. They test her and she is

allergic

> to dust mites, 3 types of grass, 7 types of trees and pollen. He

then comes

> in and says well I guess she is allergic. Then he says well you

know she

> does not look autistic, she seems too happy and loving to be

autistic. I

> said well it was here at Children's Hospital Developmental

Department that

> spent days testing her and they came up with that diagnosis. He

then said

> here is lab work to get done for immune testing and come back in a

month. I

> said ummm is there anything I can give her for her allergies. And

he said

> well she is already on nasonex. I said I know but it does not do

anything

> for her. He says again, well you know she has Ds. And I say yes I

know

> what can I give her to help her allergies, he says well there is

over the

> counter stuff. I said okay and what should I give her and how

much, he says

> well read the bottles. Ok she is almost 5 but only weighs 25

pounds. Well

> just read the bottle and I get and another reminder that she has

Ds. Okay

> here is my complaint.. How come doctors think that because my child

has Ds

> that they do not have the right to have some comfort in her life,

help

> relieve the symptoms. I get these doctors that think by telling me

she has

> Ds well that should just explain everything and me go on my merry

little

> way. They think by telling me things like she will grow out

of..That I will

> be content and keep on going. But if she has not grown out of

stuff or

> symptoms not being relived why do they not try and figure out WHY.

Just

> because she can not talk and complain to them about what is going

on does

> not mean that she does not need help. I made an appointment with

her

> primary on Thursday to be able to sit down and talk to him but I

think that

> I am going to end of crying and looking like I just can't handle

it. It is

> not that I can not handle it I just feel like she is being pushed

through

> without anyone figuring out what is going on. Any advice or

comments would

> greatly be appreciated because I feel like I am losing it here and

I know

> from reading that there are a number of you that have been there

done that

> and your children are older. Thank you in advance.

>

>

>

> -

>

>

>

>

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Posted
Posted

Hi ,

I am so sorry, I know that pain I went through that last May with my son at

an eye doctors appt. I called the office back the next day, and told them

that I was not pleased at all at this doctors behavior, and that I wanted to see

another doctor in the same office free of charge, they did so, and the next

doctor was great. I also called his primary doctor who referred this jerk,

and let him know about it, and told him to please not refer him to any of his

other patients who have disabilities.

Viola

**************Create a Home Theater Like the Pros. Watch the video on AOL

Home.

(http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030\

000000001)

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Posted
Posted

!

I love to talk to you... rarely met anyone got a small kiddo...

I have a son with DS (gasp) that is 27lbs...

I know what you mean on DRs.... I think it a matter finding the 'right' one to

listen to you. We been to numerous Drs and let say... I am tired. We may have

found some answers.... more blood work and we will know for sure!

Again love to chat with ya....email me at cmedrano@...

, mom to 14yr(DS), Dayton 9yr(DS/Autism) and 5yr(DS and

adopted)

Just need to vent and ask advice LONG I'm sorry

Hi, my name is and my daughter is , she is almost 5 years

old. She has Ds and ASD. I read everything but do not post very much (I

think I will make up for that in this long post) but I just need to vent

before I explode and I figure that you all are about the only ones in my

life right now that can maybe understand what I am going through. A little

background. was born at 680 grams and 12.4 inches long, with that

comes multiple medical issues. However I keep getting well I think she will

grow out of (insert medical problem here) next year when she gets bigger.

Well that has been every year since she was born. She eats NOTHING by mouth

due to numerous medical issues, each one compounding the next. I think I

have seen almost every type of doctor known to Children's Hospital except 3

different kinds. This last one is the one the broke the camels back so to

speak. We were sent to an allergist. I have the first appointment and of

course the doctor is 45 minutes late (ha ha) He then walks in and proceeds

to tell me my daughter has Ds, one day I swear I am going to act all

surprised and yell at the doctor and deny that she does, anyways.. He then

tells me her asthma needs to get under control and I tell him I know saw

pulmo 2 weeks ago and we are working on that. He then says he does not

believe she has allergies that it is immune problems. I tell him as

politely as I can that I am there for allergy testing that ENT, pulmo and

specials needs wants her tested. He then proceeds to tell me what blood

tests I need to have done for immune testing. I again tell him why I am

there to see an ALLERGIST to get ALLERGY testing. He then says. well since

you are here it can not hurt to test her. They test her and she is allergic

to dust mites, 3 types of grass, 7 types of trees and pollen. He then comes

in and says well I guess she is allergic. Then he says well you know she

does not look autistic, she seems too happy and loving to be autistic. I

said well it was here at Children's Hospital Developmental Department that

spent days testing her and they came up with that diagnosis. He then said

here is lab work to get done for immune testing and come back in a month. I

said ummm is there anything I can give her for her allergies. And he said

well she is already on nasonex. I said I know but it does not do anything

for her. He says again, well you know she has Ds. And I say yes I know

what can I give her to help her allergies, he says well there is over the

counter stuff. I said okay and what should I give her and how much, he says

well read the bottles. Ok she is almost 5 but only weighs 25 pounds. Well

just read the bottle and I get and another reminder that she has Ds. Okay

here is my complaint.. How come doctors think that because my child has Ds

that they do not have the right to have some comfort in her life, help

relieve the symptoms. I get these doctors that think by telling me she has

Ds well that should just explain everything and me go on my merry little

way. They think by telling me things like she will grow out of..That I will

be content and keep on going. But if she has not grown out of stuff or

symptoms not being relived why do they not try and figure out WHY. Just

because she can not talk and complain to them about what is going on does

not mean that she does not need help. I made an appointment with her

primary on Thursday to be able to sit down and talk to him but I think that

I am going to end of crying and looking like I just can't handle it. It is

not that I can not handle it I just feel like she is being pushed through

without anyone figuring out what is going on. Any advice or comments would

greatly be appreciated because I feel like I am losing it here and I know

from reading that there are a number of you that have been there done that

and your children are older. Thank you in advance.

-

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Posted
Posted

: I hear your anguish! Doc's sometimes can be BPITA as Jayne

likes to say. How about telling us where you are? MAybe someone on this

list knows of doc's near you who understand that DS doesn't rule out real

issues. That ASD looks different in kids with DS but doesn't mean that it

isn't there.

I had a doc tell me when ELie was 3 that he got DS because I wasn't careful

about the water that I drank! (And he was adopted).

On Mon, Mar 31, 2008 at 11:32 PM, <

samanthanicolescloset@...> wrote:

> Hi, my name is and my daughter is , she is almost 5

> years

> old. She has Ds and ASD. I read everything but do not post very much (I

> think I will make up for that in this long post) but I just need to vent

> before I explode and I figure that you all are about the only ones in my

> life right now that can maybe understand what I am going through. A little

> background. was born at 680 grams and 12.4 inches long, with that

> comes multiple medical issues. However I keep getting well I think she

> will

> grow out of (insert medical problem here) next year when she gets bigger.

> Well that has been every year since she was born. She eats NOTHING by

> mouth

> due to numerous medical issues, each one compounding the next. I think I

> have seen almost every type of doctor known to Children's Hospital except

> 3

> different kinds. This last one is the one the broke the camels back so to

> speak. We were sent to an allergist. I have the first appointment and of

> course the doctor is 45 minutes late (ha ha) He then walks in and proceeds

> to tell me my daughter has Ds, one day I swear I am going to act all

> surprised and yell at the doctor and deny that she does, anyways.. He then

> tells me her asthma needs to get under control and I tell him I know saw

> pulmo 2 weeks ago and we are working on that. He then says he does not

> believe she has allergies that it is immune problems. I tell him as

> politely as I can that I am there for allergy testing that ENT, pulmo and

> specials needs wants her tested. He then proceeds to tell me what blood

> tests I need to have done for immune testing. I again tell him why I am

> there to see an ALLERGIST to get ALLERGY testing. He then says. well since

> you are here it can not hurt to test her. They test her and she is

> allergic

> to dust mites, 3 types of grass, 7 types of trees and pollen. He then

> comes

> in and says well I guess she is allergic. Then he says well you know she

> does not look autistic, she seems too happy and loving to be autistic. I

> said well it was here at Children's Hospital Developmental Department that

> spent days testing her and they came up with that diagnosis. He then said

> here is lab work to get done for immune testing and come back in a month.

> I

> said ummm is there anything I can give her for her allergies. And he said

> well she is already on nasonex. I said I know but it does not do anything

> for her. He says again, well you know she has Ds. And I say yes I know

> what can I give her to help her allergies, he says well there is over the

> counter stuff. I said okay and what should I give her and how much, he

> says

> well read the bottles. Ok she is almost 5 but only weighs 25 pounds. Well

> just read the bottle and I get and another reminder that she has Ds. Okay

> here is my complaint.. How come doctors think that because my child has Ds

> that they do not have the right to have some comfort in her life, help

> relieve the symptoms. I get these doctors that think by telling me she has

> Ds well that should just explain everything and me go on my merry little

> way. They think by telling me things like she will grow out of..That I

> will

> be content and keep on going. But if she has not grown out of stuff or

> symptoms not being relived why do they not try and figure out WHY. Just

> because she can not talk and complain to them about what is going on does

> not mean that she does not need help. I made an appointment with her

> primary on Thursday to be able to sit down and talk to him but I think

> that

> I am going to end of crying and looking like I just can't handle it. It is

> not that I can not handle it I just feel like she is being pushed through

> without anyone figuring out what is going on. Any advice or comments would

> greatly be appreciated because I feel like I am losing it here and I know

> from reading that there are a number of you that have been there done that

> and your children are older. Thank you in advance.

>

> -

>

>

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Posted
Posted

I'd get another dr. has a lot of drs and they all take his issues very

seriously and work their hardest to help. The very few I've run across who

didn't, I fired pronto. Do you have a developmental pediatrician and down

syndrome clinic in your area? Typically, the drs associated with those clinics

don't have those attitudes.

I have heard other moms say they've received the " well, you know, s/he has DS "

comment, too. I think my favorite response is a look of dumbfounded amazement

with " Oh, my goodness. You're kidding, right? " or similar.

ate nothing but baby food purees by mouth til he got into feeding therapies

at 4, almost 5. When he was that age he weighed about 24 pounds. The feeding

therapies have helped enormously. He's still tiny and tube fed at night, but he

eats, and he's up to 37 pounds at age 8. He gets two hours of feeding therapies

a week; one from an OT, one from an SLT.

Good luck!

Beth, mom to , DS, ASD, leukemia survivor

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Posted
Posted

Sorry you had such an awful experience. I empathize with you. My son,

Logan, is 8 ½ and we have been dealing with allergy issues since he was two.

Our first attempt at seeing an allergist was much like yours. However,

knowing in my gut that allergies were affecting every aspect of his life,

searched for another. I found THE MOST FANTASTIC DOCTOR. For over a year,

we drove almost an hour each way to get allergy shots and I know he (the

doctor) was worth it. We still have allergy issues, but can now be

proactive in March and October (the absolute worst time for my little guy).

I actually call Halloween Annual Mold Day, because without fail, he ends up

an absolute mess after being out trick or treating.

I don’t know where you are located, but we are in the Chicago area and the

Dr. is Dr. Pollock. He has offices in Winnetka and Glenview. If that

won’t work (location), I encourage you to follow your gut and find someone

who will work with your daughter.

_____

From: [mailto: ] On Behalf

Of

Sent: Monday, March 31, 2008 10:32 PM

To:

Subject: Just need to vent and ask advice LONG I'm sorry

Hi, my name is and my daughter is , she is almost 5 years

old. She has Ds and ASD. I read everything but do not post very much (I

think I will make up for that in this long post) but I just need to vent

before I explode and I figure that you all are about the only ones in my

life right now that can maybe understand what I am going through. A little

background. was born at 680 grams and 12.4 inches long, with that

comes multiple medical issues. However I keep getting well I think she will

grow out of (insert medical problem here) next year when she gets bigger.

Well that has been every year since she was born. She eats NOTHING by mouth

due to numerous medical issues, each one compounding the next. I think I

have seen almost every type of doctor known to Children's Hospital except 3

different kinds. This last one is the one the broke the camels back so to

speak. We were sent to an allergist. I have the first appointment and of

course the doctor is 45 minutes late (ha ha) He then walks in and proceeds

to tell me my daughter has Ds, one day I swear I am going to act all

surprised and yell at the doctor and deny that she does, anyways.. He then

tells me her asthma needs to get under control and I tell him I know saw

pulmo 2 weeks ago and we are working on that. He then says he does not

believe she has allergies that it is immune problems. I tell him as

politely as I can that I am there for allergy testing that ENT, pulmo and

specials needs wants her tested. He then proceeds to tell me what blood

tests I need to have done for immune testing. I again tell him why I am

there to see an ALLERGIST to get ALLERGY testing. He then says. well since

you are here it can not hurt to test her. They test her and she is allergic

to dust mites, 3 types of grass, 7 types of trees and pollen. He then comes

in and says well I guess she is allergic. Then he says well you know she

does not look autistic, she seems too happy and loving to be autistic. I

said well it was here at Children's Hospital Developmental Department that

spent days testing her and they came up with that diagnosis. He then said

here is lab work to get done for immune testing and come back in a month. I

said ummm is there anything I can give her for her allergies. And he said

well she is already on nasonex. I said I know but it does not do anything

for her. He says again, well you know she has Ds. And I say yes I know

what can I give her to help her allergies, he says well there is over the

counter stuff. I said okay and what should I give her and how much, he says

well read the bottles. Ok she is almost 5 but only weighs 25 pounds. Well

just read the bottle and I get and another reminder that she has Ds. Okay

here is my complaint.. How come doctors think that because my child has Ds

that they do not have the right to have some comfort in her life, help

relieve the symptoms. I get these doctors that think by telling me she has

Ds well that should just explain everything and me go on my merry little

way. They think by telling me things like she will grow out of..That I will

be content and keep on going. But if she has not grown out of stuff or

symptoms not being relived why do they not try and figure out WHY. Just

because she can not talk and complain to them about what is going on does

not mean that she does not need help. I made an appointment with her

primary on Thursday to be able to sit down and talk to him but I think that

I am going to end of crying and looking like I just can't handle it. It is

not that I can not handle it I just feel like she is being pushed through

without anyone figuring out what is going on. Any advice or comments would

greatly be appreciated because I feel like I am losing it here and I know

from reading that there are a number of you that have been there done that

and your children are older. Thank you in advance.

-

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Posted
Posted

Hi, I am in California, San Diego area. I feel the same way about her and

the allergies, I know that this is one of the main issues of her being a

never ending Petri dish :-) . She either is completely running nose and

eyes or dried up so bad she can’t breathe.

_____

From: [mailto: ] On Behalf

Of L. Davenport

Sent: Tuesday, April 01, 2008 7:27 AM

To:

Subject: RE: Just need to vent and ask advice LONG I'm sorry

Sorry you had such an awful experience. I empathize with you. My son,

Logan, is 8 ½ and we have been dealing with allergy issues since he was two.

Our first attempt at seeing an allergist was much like yours. However,

knowing in my gut that allergies were affecting every aspect of his life,

searched for another. I found THE MOST FANTASTIC DOCTOR. For over a year,

we drove almost an hour each way to get allergy shots and I know he (the

doctor) was worth it. We still have allergy issues, but can now be

proactive in March and October (the absolute worst time for my little guy).

I actually call Halloween Annual Mold Day, because without fail, he ends up

an absolute mess after being out trick or treating.

I don’t know where you are located, but we are in the Chicago area and the

Dr. is Dr. Pollock. He has offices in Winnetka and Glenview. If that

won’t work (location), I encourage you to follow your gut and find someone

who will work with your daughter.

_____

From: @yahoogrou <mailto:%40yahoogroups.com> ps.com

[mailto:@yahoogrou <mailto:%40yahoogroups.com> ps.com] On

Behalf

Of

Sent: Monday, March 31, 2008 10:32 PM

To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

Subject: Just need to vent and ask advice LONG I'm sorry

Hi, my name is and my daughter is , she is almost 5 years

old. She has Ds and ASD. I read everything but do not post very much (I

think I will make up for that in this long post) but I just need to vent

before I explode and I figure that you all are about the only ones in my

life right now that can maybe understand what I am going through. A little

background. was born at 680 grams and 12.4 inches long, with that

comes multiple medical issues. However I keep getting well I think she will

grow out of (insert medical problem here) next year when she gets bigger.

Well that has been every year since she was born. She eats NOTHING by mouth

due to numerous medical issues, each one compounding the next. I think I

have seen almost every type of doctor known to Children's Hospital except 3

different kinds. This last one is the one the broke the camels back so to

speak. We were sent to an allergist. I have the first appointment and of

course the doctor is 45 minutes late (ha ha) He then walks in and proceeds

to tell me my daughter has Ds, one day I swear I am going to act all

surprised and yell at the doctor and deny that she does, anyways.. He then

tells me her asthma needs to get under control and I tell him I know saw

pulmo 2 weeks ago and we are working on that. He then says he does not

believe she has allergies that it is immune problems. I tell him as

politely as I can that I am there for allergy testing that ENT, pulmo and

specials needs wants her tested. He then proceeds to tell me what blood

tests I need to have done for immune testing. I again tell him why I am

there to see an ALLERGIST to get ALLERGY testing. He then says. well since

you are here it can not hurt to test her. They test her and she is allergic

to dust mites, 3 types of grass, 7 types of trees and pollen. He then comes

in and says well I guess she is allergic. Then he says well you know she

does not look autistic, she seems too happy and loving to be autistic. I

said well it was here at Children's Hospital Developmental Department that

spent days testing her and they came up with that diagnosis. He then said

here is lab work to get done for immune testing and come back in a month. I

said ummm is there anything I can give her for her allergies. And he said

well she is already on nasonex. I said I know but it does not do anything

for her. He says again, well you know she has Ds. And I say yes I know

what can I give her to help her allergies, he says well there is over the

counter stuff. I said okay and what should I give her and how much, he says

well read the bottles. Ok she is almost 5 but only weighs 25 pounds. Well

just read the bottle and I get and another reminder that she has Ds. Okay

here is my complaint.. How come doctors think that because my child has Ds

that they do not have the right to have some comfort in her life, help

relieve the symptoms. I get these doctors that think by telling me she has

Ds well that should just explain everything and me go on my merry little

way. They think by telling me things like she will grow out of..That I will

be content and keep on going. But if she has not grown out of stuff or

symptoms not being relived why do they not try and figure out WHY. Just

because she can not talk and complain to them about what is going on does

not mean that she does not need help. I made an appointment with her

primary on Thursday to be able to sit down and talk to him but I think that

I am going to end of crying and looking like I just can't handle it. It is

not that I can not handle it I just feel like she is being pushed through

without anyone figuring out what is going on. Any advice or comments would

greatly be appreciated because I feel like I am losing it here and I know

from reading that there are a number of you that have been there done that

and your children are older. Thank you in advance.

-

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Posted
Posted

Hi! I am going to be meeting with her special needs doctor and Thursday and

talk to him, he is really good and loves her and my family so I am hoping

that he can help get this all together.

eating by mouth is not an option for us at the moment. Due to her

motility, size of her tummy, low blood sugars and how huge her tonsils are

they have tried and tried but to no avail. We have tried for 3 years to get

her tonsils and adnoids out and have been to 3 different ENT's but they feel

she is " too high risk " for surgery. It is a pain in my rump because I know

that that would help her out.

_____

From: [mailto: ] On Behalf

Of B DeHoff

Sent: Tuesday, April 01, 2008 7:14 AM

To:

Subject: Re: Just need to vent and ask advice LONG I'm sorry

I'd get another dr. has a lot of drs and they all take his issues very

seriously and work their hardest to help. The very few I've run across who

didn't, I fired pronto. Do you have a developmental pediatrician and down

syndrome clinic in your area? Typically, the drs associated with those

clinics don't have those attitudes.

I have heard other moms say they've received the " well, you know, s/he has

DS " comment, too. I think my favorite response is a look of dumbfounded

amazement with " Oh, my goodness. You're kidding, right? " or similar.

ate nothing but baby food purees by mouth til he got into feeding

therapies at 4, almost 5. When he was that age he weighed about 24 pounds.

The feeding therapies have helped enormously. He's still tiny and tube fed

at night, but he eats, and he's up to 37 pounds at age 8. He gets two hours

of feeding therapies a week; one from an OT, one from an SLT.

Good luck!

Beth, mom to , DS, ASD, leukemia survivor

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Posted
Posted

Hi! I live in California area, San Diego. I have to laugh about the water

thing that is just too funny and the fact that he was adopted just makes it

funnier at how docs can be. What are some real issues that our children may

have. I know all the ones that are from her severe prematurity but I do not

know what all I should have them be looking at.

What all issues do you and the others have with your children.

Thanks-

_____

From: [mailto: ] On Behalf

Of Sara Cohen

Sent: Tuesday, April 01, 2008 5:33 AM

To:

Subject: Re: Just need to vent and ask advice LONG I'm sorry

: I hear your anguish! Doc's sometimes can be BPITA as Jayne

likes to say. How about telling us where you are? MAybe someone on this

list knows of doc's near you who understand that DS doesn't rule out real

issues. That ASD looks different in kids with DS but doesn't mean that it

isn't there.

I had a doc tell me when ELie was 3 that he got DS because I wasn't careful

about the water that I drank! (And he was adopted).

On Mon, Mar 31, 2008 at 11:32 PM, <

samanthanicolesclos <mailto:samanthanicolescloset%40cableusa.com>

et@...> wrote:

> Hi, my name is and my daughter is , she is almost 5

> years

> old. She has Ds and ASD. I read everything but do not post very much (I

> think I will make up for that in this long post) but I just need to vent

> before I explode and I figure that you all are about the only ones in my

> life right now that can maybe understand what I am going through. A little

> background. was born at 680 grams and 12.4 inches long, with that

> comes multiple medical issues. However I keep getting well I think she

> will

> grow out of (insert medical problem here) next year when she gets bigger.

> Well that has been every year since she was born. She eats NOTHING by

> mouth

> due to numerous medical issues, each one compounding the next. I think I

> have seen almost every type of doctor known to Children's Hospital except

> 3

> different kinds. This last one is the one the broke the camels back so to

> speak. We were sent to an allergist. I have the first appointment and of

> course the doctor is 45 minutes late (ha ha) He then walks in and proceeds

> to tell me my daughter has Ds, one day I swear I am going to act all

> surprised and yell at the doctor and deny that she does, anyways.. He then

> tells me her asthma needs to get under control and I tell him I know saw

> pulmo 2 weeks ago and we are working on that. He then says he does not

> believe she has allergies that it is immune problems. I tell him as

> politely as I can that I am there for allergy testing that ENT, pulmo and

> specials needs wants her tested. He then proceeds to tell me what blood

> tests I need to have done for immune testing. I again tell him why I am

> there to see an ALLERGIST to get ALLERGY testing. He then says. well since

> you are here it can not hurt to test her. They test her and she is

> allergic

> to dust mites, 3 types of grass, 7 types of trees and pollen. He then

> comes

> in and says well I guess she is allergic. Then he says well you know she

> does not look autistic, she seems too happy and loving to be autistic. I

> said well it was here at Children's Hospital Developmental Department that

> spent days testing her and they came up with that diagnosis. He then said

> here is lab work to get done for immune testing and come back in a month.

> I

> said ummm is there anything I can give her for her allergies. And he said

> well she is already on nasonex. I said I know but it does not do anything

> for her. He says again, well you know she has Ds. And I say yes I know

> what can I give her to help her allergies, he says well there is over the

> counter stuff. I said okay and what should I give her and how much, he

> says

> well read the bottles. Ok she is almost 5 but only weighs 25 pounds. Well

> just read the bottle and I get and another reminder that she has Ds. Okay

> here is my complaint.. How come doctors think that because my child has Ds

> that they do not have the right to have some comfort in her life, help

> relieve the symptoms. I get these doctors that think by telling me she has

> Ds well that should just explain everything and me go on my merry little

> way. They think by telling me things like she will grow out of..That I

> will

> be content and keep on going. But if she has not grown out of stuff or

> symptoms not being relived why do they not try and figure out WHY. Just

> because she can not talk and complain to them about what is going on does

> not mean that she does not need help. I made an appointment with her

> primary on Thursday to be able to sit down and talk to him but I think

> that

> I am going to end of crying and looking like I just can't handle it. It is

> not that I can not handle it I just feel like she is being pushed through

> without anyone figuring out what is going on. Any advice or comments would

> greatly be appreciated because I feel like I am losing it here and I know

> from reading that there are a number of you that have been there done that

> and your children are older. Thank you in advance.

>

> -

>

>

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Posted
Posted

Hi! That is what I am hoping for when I see her special needs doc on

Thursday that he will refer me to a different allergist. He is pretty good

about that. He has sent me to 3 different ENT's trying to get them to take

her tonsils out.

_____

From: [mailto: ] On Behalf

Of ViPorier@...

Sent: Tuesday, April 01, 2008 4:33 AM

To:

Subject: Re: Re: Just need to vent and ask advice LONG I'm sorry

Hi ,

I am so sorry, I know that pain I went through that last May with my son at

an eye doctors appt. I called the office back the next day, and told them

that I was not pleased at all at this doctors behavior, and that I wanted to

see

another doctor in the same office free of charge, they did so, and the next

doctor was great. I also called his primary doctor who referred this jerk,

and let him know about it, and told him to please not refer him to any of

his

other patients who have disabilities.

Viola

**************Create a Home Theater Like the Pros. Watch the video on AOL

Home.

(http://home.

<http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom0

0030000000001>

aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030000000001

)

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Posted
Posted

I have made an appointment with the referring doc to get another ref. I do

believe that the medical community needs to be aware that our children need

to be treated with respect and that their pain/symptoms do matter and that

just because they can not express it does not mean that it is ignored.

_____

From: [mailto: ] On Behalf

Of

Sent: Monday, March 31, 2008 9:02 PM

To:

Subject: Re: Just need to vent and ask advice LONG I'm sorry

, Were you referred to this Dr. by the other Dr.'s you speak

of? I have had the same problem with Dr.'s and I know oh to well

changing Dr's is not always an option.I would call the Dr. that

referred me to this Dr. and let them no that this Dr. did nothing.Ask

the pumo to call an allergist they personally know and explain your

situation with your child.See if you can get a copy of the test

results from this allergist to take to the next allergist.I took my

son for allergery testing when he was small and yes they can give

prescribe for you something that will help the allergies better than

other the counter meds. I was just typing a letter to NDSS if they

want to do something constructive they need to make the medical

society more aware of how we and are children are treated from

medical Dr.'s.Like you said as if our children do not matter.You have

to be persistant and even that does not always get you somewhere.

Cyndi b

>

> Hi, my name is and my daughter is , she is almost

5 years

> old. She has Ds and ASD. I read everything but do not post very

much (I

> think I will make up for that in this long post) but I just need to

vent

> before I explode and I figure that you all are about the only ones

in my

> life right now that can maybe understand what I am going through.

A little

> background. was born at 680 grams and 12.4 inches long,

with that

> comes multiple medical issues. However I keep getting well I think

she will

> grow out of (insert medical problem here) next year when she gets

bigger.

> Well that has been every year since she was born. She eats NOTHING

by mouth

> due to numerous medical issues, each one compounding the next. I

think I

> have seen almost every type of doctor known to Children's Hospital

except 3

> different kinds. This last one is the one the broke the camels

back so to

> speak. We were sent to an allergist. I have the first appointment

and of

> course the doctor is 45 minutes late (ha ha) He then walks in and

proceeds

> to tell me my daughter has Ds, one day I swear I am going to act all

> surprised and yell at the doctor and deny that she does, anyways..

He then

> tells me her asthma needs to get under control and I tell him I

know saw

> pulmo 2 weeks ago and we are working on that. He then says he does

not

> believe she has allergies that it is immune problems. I tell him as

> politely as I can that I am there for allergy testing that ENT,

pulmo and

> specials needs wants her tested. He then proceeds to tell me what

blood

> tests I need to have done for immune testing. I again tell him why

I am

> there to see an ALLERGIST to get ALLERGY testing. He then says.

well since

> you are here it can not hurt to test her. They test her and she is

allergic

> to dust mites, 3 types of grass, 7 types of trees and pollen. He

then comes

> in and says well I guess she is allergic. Then he says well you

know she

> does not look autistic, she seems too happy and loving to be

autistic. I

> said well it was here at Children's Hospital Developmental

Department that

> spent days testing her and they came up with that diagnosis. He

then said

> here is lab work to get done for immune testing and come back in a

month. I

> said ummm is there anything I can give her for her allergies. And

he said

> well she is already on nasonex. I said I know but it does not do

anything

> for her. He says again, well you know she has Ds. And I say yes I

know

> what can I give her to help her allergies, he says well there is

over the

> counter stuff. I said okay and what should I give her and how

much, he says

> well read the bottles. Ok she is almost 5 but only weighs 25

pounds. Well

> just read the bottle and I get and another reminder that she has

Ds. Okay

> here is my complaint.. How come doctors think that because my child

has Ds

> that they do not have the right to have some comfort in her life,

help

> relieve the symptoms. I get these doctors that think by telling me

she has

> Ds well that should just explain everything and me go on my merry

little

> way. They think by telling me things like she will grow out

of..That I will

> be content and keep on going. But if she has not grown out of

stuff or

> symptoms not being relived why do they not try and figure out WHY.

Just

> because she can not talk and complain to them about what is going

on does

> not mean that she does not need help. I made an appointment with

her

> primary on Thursday to be able to sit down and talk to him but I

think that

> I am going to end of crying and looking like I just can't handle

it. It is

> not that I can not handle it I just feel like she is being pushed

through

> without anyone figuring out what is going on. Any advice or

comments would

> greatly be appreciated because I feel like I am losing it here and

I know

> from reading that there are a number of you that have been there

done that

> and your children are older. Thank you in advance.

>

>

>

> -

>

>

>

>

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Posted
Posted

Oops I also meant to say that our Children's Hospital JUST opened up a Ds

clinic so I got all excited and called and well they are only seeing

children under 5 years old and since she turns 5 April 23, then it would be

a waste of my time. She does not have a developmental ped so to speak but

her doc is a special needs doctor. She had to " interview " to be able to

have him. I love him and he is great and I almost feel he is as frustrated

as I am with his colleagues.

_____

From: [mailto: ] On Behalf

Of B DeHoff

Sent: Tuesday, April 01, 2008 7:14 AM

To:

Subject: Re: Just need to vent and ask advice LONG I'm sorry

I'd get another dr. has a lot of drs and they all take his issues very

seriously and work their hardest to help. The very few I've run across who

didn't, I fired pronto. Do you have a developmental pediatrician and down

syndrome clinic in your area? Typically, the drs associated with those

clinics don't have those attitudes.

I have heard other moms say they've received the " well, you know, s/he has

DS " comment, too. I think my favorite response is a look of dumbfounded

amazement with " Oh, my goodness. You're kidding, right? " or similar.

ate nothing but baby food purees by mouth til he got into feeding

therapies at 4, almost 5. When he was that age he weighed about 24 pounds.

The feeding therapies have helped enormously. He's still tiny and tube fed

at night, but he eats, and he's up to 37 pounds at age 8. He gets two hours

of feeding therapies a week; one from an OT, one from an SLT.

Good luck!

Beth, mom to , DS, ASD, leukemia survivor

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Posted
Posted

Hi ,

I'm so sorry that you had to go through such aggravation with that allergist.

Personally, I would dump this guy as quickly as possible and get someone else-

perhaps your developmental ped. would have a recommendation or someone on the

list serv?

For what it's worth, my son's ENT recommended Singulair 4mg. granules (mixed w/

applesauce in the morning) and a teaspoon of Zyrtec at night for his allergies.

Does have ear tubes? How do her adnoids and tonsils look? Finally, the

ENT recommended that we put a little bit of bacitracin ointment in 's nose

(the vestibule/outer lining) first thing in the morning and at night to prevent

the bacteria from turning into something more infectious that would require

antibiotics. I really empathize, as our was sick 4 times since Christmas

with multiple sinus/ear infections and it was exhausting for everyone going

back and forth to the doctor. So far, we've had an uneventful 2 weeks, plus

with the spring, things should get better. Ask your ENT about the above regimen-

it may help your daughter. Finally, the Zyrtec has a drowsy component, so it has

really helped sleep more soundly and longer!

Feel free to vent whenever you need to- that is what our group is for, to

support one another in good as well as challenging times. Good luck to you and

please keep us posted.

Best,

Mom to , 4 yrs. old

DS/PDD-NOS

To: @...: samanthanicolescloset@...: Mon,

31 Mar 2008 20:32:10 -0700Subject: Just need to vent and ask advice

LONG I'm sorry

Hi, my name is and my daughter is , she is almost 5 yearsold.

She has Ds and ASD. I read everything but do not post very much (Ithink I will

make up for that in this long post) but I just need to ventbefore I explode and

I figure that you all are about the only ones in mylife right now that can maybe

understand what I am going through. A littlebackground. was born at 680

grams and 12.4 inches long, with thatcomes multiple medical issues. However I

keep getting well I think she willgrow out of (insert medical problem here) next

year when she gets bigger.Well that has been every year since she was born. She

eats NOTHING by mouthdue to numerous medical issues, each one compounding the

next. I think Ihave seen almost every type of doctor known to Children's

Hospital except 3different kinds. This last one is the one the broke the camels

back so tospeak. We were sent to an allergist. I have the first appointment and

ofcourse the doctor is 45 minutes late (ha ha) He then walks in and proceedsto

tell me my daughter has Ds, one day I swear I am going to act allsurprised and

yell at the doctor and deny that she does, anyways.. He thentells me her asthma

needs to get under control and I tell him I know sawpulmo 2 weeks ago and we are

working on that. He then says he does notbelieve she has allergies that it is

immune problems. I tell him aspolitely as I can that I am there for allergy

testing that ENT, pulmo andspecials needs wants her tested. He then proceeds to

tell me what bloodtests I need to have done for immune testing. I again tell him

why I amthere to see an ALLERGIST to get ALLERGY testing. He then says. well

sinceyou are here it can not hurt to test her. They test her and she is

allergicto dust mites, 3 types of grass, 7 types of trees and pollen. He then

comesin and says well I guess she is allergic. Then he says well you know

shedoes not look autistic, she seems too happy and loving to be autistic. Isaid

well it was here at Children's Hospital Developmental Department thatspent days

testing her and they came up with that diagnosis. He then saidhere is lab work

to get done for immune testing and come back in a month. Isaid ummm is there

anything I can give her for her allergies. And he saidwell she is already on

nasonex. I said I know but it does not do anythingfor her. He says again, well

you know she has Ds. And I say yes I knowwhat can I give her to help her

allergies, he says well there is over thecounter stuff. I said okay and what

should I give her and how much, he sayswell read the bottles. Ok she is almost 5

but only weighs 25 pounds. Welljust read the bottle and I get and another

reminder that she has Ds. Okayhere is my complaint.. How come doctors think that

because my child has Dsthat they do not have the right to have some comfort in

her life, helprelieve the symptoms. I get these doctors that think by telling me

she hasDs well that should just explain everything and me go on my merry

littleway. They think by telling me things like she will grow out of..That I

willbe content and keep on going. But if she has not grown out of stuff

orsymptoms not being relived why do they not try and figure out WHY. Justbecause

she can not talk and complain to them about what is going on doesnot mean that

she does not need help. I made an appointment with herprimary on Thursday to be

able to sit down and talk to him but I think thatI am going to end of crying and

looking like I just can't handle it. It isnot that I can not handle it I just

feel like she is being pushed throughwithout anyone figuring out what is going

on. Any advice or comments wouldgreatly be appreciated because I feel like I am

losing it here and I knowfrom reading that there are a number of you that have

been there done thatand your children are older. Thank you in advance.-

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Posted
Posted

,

Sorry your going through those problems. I actually

cried while reading your post, because I feel your

pain. I just recently got a diagnosis of Autism for

a. Before then everything I asked the doctor

was because she had Down syndrome and as you know all

children are different. I don't really have advice to

give you, because I'm still going threw some of the

same stuff. At least now I know I'm not crazy. I

haven't been to as many different types of specialist

as you but I have seen from pcp, cardio, ent, ortho,

endo, optic, there may be more, just know that we are

going through a learning experience and everyday will

be different. We just have to go with the punches so

to speak. If you ever need to vent I will be here.

With Love,

Stella

________________________________________________________________________________\

____

You rock. That's why Blockbuster's offering you one month of Blockbuster Total

Access, No Cost.

http://tc.deals.yahoo.com/tc/blockbuster/text5.com

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Posted
Posted

Does your child snore? About two years ago I notcied a was

snoring at night. I told the doctor and of course had to see an ent.

She ended up having slightly enlarged tonsils. So they removed them

along will her adnoids. During the same surgery she had tubes put in

her ears. After that we noticed her talking alittle more and sleeping

better. i don't know if this applies but it could be another avenue

to try if it does.

>

> Hi! That is what I am hoping for when I see her special needs doc

on

> Thursday that he will refer me to a different allergist. He is

pretty good

> about that. He has sent me to 3 different ENT's trying to get them

to take

> her tonsils out.

>

>

>

>

>

>

>

> _____

>

> From: [mailto: ]

On Behalf

> Of ViPorier@...

> Sent: Tuesday, April 01, 2008 4:33 AM

> To:

> Subject: Re: Re: Just need to vent and ask advice LONG

I'm sorry

>

>

>

> Hi ,

>

> I am so sorry, I know that pain I went through that last May with

my son at

> an eye doctors appt. I called the office back the next day, and

told them

> that I was not pleased at all at this doctors behavior, and that I

wanted to

> see

> another doctor in the same office free of charge, they did so, and

the next

> doctor was great. I also called his primary doctor who referred

this jerk,

> and let him know about it, and told him to please not refer him to

any of

> his

> other patients who have disabilities.

>

> Viola

>

> **************Create a Home Theater Like the Pros. Watch the video

on AOL

> Home.

> (http://home.

> <http://home.aol.com/diy/home-improvement-eric-stromer?

video=15 & ncid=aolhom0

> 0030000000001>

> aol.com/diy/home-improvement-eric-stromer?

video=15 & ncid=aolhom00030000000001

> )

>

>

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Posted
Posted

Just remember, all drugs work differently on different people. Logan was

put on Zyrtec two different times and I SWEAR it made him bipolar!

_____

From: [mailto: ] On Behalf

Of McDonnell

Sent: Tuesday, April 01, 2008 1:17 PM

To:

Subject: RE: Just need to vent and ask advice LONG I'm sorry

Hi ,

I'm so sorry that you had to go through such aggravation with that

allergist. Personally, I would dump this guy as quickly as possible and get

someone else- perhaps your developmental ped. would have a recommendation or

someone on the list serv?

For what it's worth, my son's ENT recommended Singulair 4mg. granules (mixed

w/ applesauce in the morning) and a teaspoon of Zyrtec at night for his

allergies. Does have ear tubes? How do her adnoids and tonsils

look? Finally, the ENT recommended that we put a little bit of bacitracin

ointment in 's nose (the vestibule/outer lining) first thing in the

morning and at night to prevent the bacteria from turning into something

more infectious that would require antibiotics. I really empathize, as our

was sick 4 times since Christmas with multiple sinus/ear infections

and it was exhausting for everyone going back and forth to the doctor. So

far, we've had an uneventful 2 weeks, plus with the spring, things should

get better. Ask your ENT about the above regimen- it may help your daughter.

Finally, the Zyrtec has a drowsy component, so it has really helped

sleep more soundly and longer!

Feel free to vent whenever you need to- that is what our group is for, to

support one another in good as well as challenging times. Good luck to you

and please keep us posted.

Best,

Mom to , 4 yrs. old

DS/PDD-NOS

To: @yahoogrou <mailto:%40yahoogroups.comFrom> ps.comFrom:

samanthanicolesclos <mailto:samanthanicolescloset%40cableusa.comDate>

et@...: Mon, 31 Mar 2008 20:32:10 -0700Subject:

Just need to vent and ask advice LONG I'm sorry

Hi, my name is and my daughter is , she is almost 5

yearsold. She has Ds and ASD. I read everything but do not post very much

(Ithink I will make up for that in this long post) but I just need to

ventbefore I explode and I figure that you all are about the only ones in

mylife right now that can maybe understand what I am going through. A

littlebackground. was born at 680 grams and 12.4 inches long, with

thatcomes multiple medical issues. However I keep getting well I think she

willgrow out of (insert medical problem here) next year when she gets

bigger.Well that has been every year since she was born. She eats NOTHING by

mouthdue to numerous medical issues, each one compounding the next. I think

Ihave seen almost every type of doctor known to Children's Hospital except

3different kinds. This last one is the one the broke the camels back so

tospeak. We were sent to an allergist. I have the first appointment and

ofcourse the doctor is 45 minutes late (ha ha) He then walks in and

proceedsto tell me my daughter has Ds, one day I swear I am going to act

allsurprised and yell at the doctor and deny that she does, anyways.. He

thentells me her asthma needs to get under control and I tell him I know

sawpulmo 2 weeks ago and we are working on that. He then says he does

notbelieve she has allergies that it is immune problems. I tell him

aspolitely as I can that I am there for allergy testing that ENT, pulmo

andspecials needs wants her tested. He then proceeds to tell me what

bloodtests I need to have done for immune testing. I again tell him why I

amthere to see an ALLERGIST to get ALLERGY testing. He then says. well

sinceyou are here it can not hurt to test her. They test her and she is

allergicto dust mites, 3 types of grass, 7 types of trees and pollen. He

then comesin and says well I guess she is allergic. Then he says well you

know shedoes not look autistic, she seems too happy and loving to be

autistic. Isaid well it was here at Children's Hospital Developmental

Department thatspent days testing her and they came up with that diagnosis.

He then saidhere is lab work to get done for immune testing and come back in

a month. Isaid ummm is there anything I can give her for her allergies. And

he saidwell she is already on nasonex. I said I know but it does not do

anythingfor her. He says again, well you know she has Ds. And I say yes I

knowwhat can I give her to help her allergies, he says well there is over

thecounter stuff. I said okay and what should I give her and how much, he

sayswell read the bottles. Ok she is almost 5 but only weighs 25 pounds.

Welljust read the bottle and I get and another reminder that she has Ds.

Okayhere is my complaint.. How come doctors think that because my child has

Dsthat they do not have the right to have some comfort in her life,

helprelieve the symptoms. I get these doctors that think by telling me she

hasDs well that should just explain everything and me go on my merry

littleway. They think by telling me things like she will grow out of..That I

willbe content and keep on going. But if she has not grown out of stuff

orsymptoms not being relived why do they not try and figure out WHY.

Justbecause she can not talk and complain to them about what is going on

doesnot mean that she does not need help. I made an appointment with

herprimary on Thursday to be able to sit down and talk to him but I think

thatI am going to end of crying and looking like I just can't handle it. It

isnot that I can not handle it I just feel like she is being pushed

throughwithout anyone figuring out what is going on. Any advice or comments

wouldgreatly be appreciated because I feel like I am losing it here and I

knowfrom reading that there are a number of you that have been there done

thatand your children are older. Thank you in advance.- [Non-text

portions of this message have been removed]

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Posted
Posted

,

Funny that you are bringing up this subject because yesterday I left a message

with Jake's (almost 9 ds/pdd) primary care doctor to discuss allergies. He

keeps getting rashes in different places, and I want to see if there are other

allergens that might be contributing to his behaviors, etc.

My doctor preceded to tell me that allergy testing is really not worth doing.

He might test positive for allergens but then not really react to said

allergens. Just because the test says they are means that they could be but not

necessarily be a problem allergen for that erson.

I then said but if he tested postive for 10 things, I could start ruling out

what things actually are triggers for him. I used the recent posting on site

here about the spelt. I reminded him that we are wheat free//gluten free and

that Jake has been on soy since birth because if issues when he was born.

He then startes on this message about " parents need to be careful about what

they read on the internet. All this talk of allergies, vaccinations, etc. None

of it is proven,,,,blah, blah, blah... "

It was totally obvious to me that he was not going to be support of my need to

find out the facts pertaining to Jake. I told my husband I would searching for

another doctor. It just makes me so mad. A friend of mine said almost the same

thing as you did ..Just because he has DS/Autism, he doesn't deserve to be

allergy tested and get relief? that makes no sense.

So, Our search has begun. Good Luck on your journey as well!

Holly

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Posted
Posted

Yes snores and we know her tonsils are 3+ (kissing tonsils) and her

adenoids are huge and we are awaiting authorization for her 2nd sleep study

since the 1st one was a disaster. Trying to get an ENT to take them out is

another 3 year battle since they say she is too high risk for surgery. I

can say that I am thankful she has NEVER EVER EVER had an ear infection. It

is always upper respiratory, sinus or pneumonia. I think that if her

tonsils and adenoids were taken out it would be better and so does every

other doc I go to but I can't get ENT to agree and I have seen 3 different

ones.

_____

From: [mailto: ] On Behalf

Of stellarah

Sent: Tuesday, April 01, 2008 12:21 PM

To:

Subject: Re: Just need to vent and ask advice LONG I'm sorry

Does your child snore? About two years ago I notcied a was

snoring at night. I told the doctor and of course had to see an ent.

She ended up having slightly enlarged tonsils. So they removed them

along will her adnoids. During the same surgery she had tubes put in

her ears. After that we noticed her talking alittle more and sleeping

better. i don't know if this applies but it could be another avenue

to try if it does.

>

> Hi! That is what I am hoping for when I see her special needs doc

on

> Thursday that he will refer me to a different allergist. He is

pretty good

> about that. He has sent me to 3 different ENT's trying to get them

to take

> her tonsils out.

>

>

>

>

>

>

>

> _____

>

> From: @yahoogrou <mailto:%40yahoogroups.com> ps.com

[mailto:@yahoogrou <mailto:%40yahoogroups.com> ps.com]

On Behalf

> Of ViPorier@...

> Sent: Tuesday, April 01, 2008 4:33 AM

> To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

> Subject: Re: Re: Just need to vent and ask advice LONG

I'm sorry

>

>

>

> Hi ,

>

> I am so sorry, I know that pain I went through that last May with

my son at

> an eye doctors appt. I called the office back the next day, and

told them

> that I was not pleased at all at this doctors behavior, and that I

wanted to

> see

> another doctor in the same office free of charge, they did so, and

the next

> doctor was great. I also called his primary doctor who referred

this jerk,

> and let him know about it, and told him to please not refer him to

any of

> his

> other patients who have disabilities.

>

> Viola

>

> **************Create a Home Theater Like the Pros. Watch the video

on AOL

> Home.

> (http://home.

> <http://home. <http://home.aol.com/diy/home-improvement-eric-stromer?>

aol.com/diy/home-improvement-eric-stromer?

video=15 & ncid=aolhom0

> 0030000000001>

> aol.com/diy/home-improvement-eric-stromer?

video=15 & ncid=aolhom00030000000001

> )

>

>

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Posted
Posted

Thank you Stella. I can defiantly say that you are not crazy because if you

are then I would be too :-)

_____

From: [mailto: ] On Behalf

Of STELLA HARRELSON

Sent: Tuesday, April 01, 2008 12:13 PM

To:

Subject: Re: Just need to vent and ask advice LONG I'm sorry

,

Sorry your going through those problems. I actually

cried while reading your post, because I feel your

pain. I just recently got a diagnosis of Autism for

a. Before then everything I asked the doctor

was because she had Down syndrome and as you know all

children are different. I don't really have advice to

give you, because I'm still going threw some of the

same stuff. At least now I know I'm not crazy. I

haven't been to as many different types of specialist

as you but I have seen from pcp, cardio, ent, ortho,

endo, optic, there may be more, just know that we are

going through a learning experience and everyday will

be different. We just have to go with the punches so

to speak. If you ever need to vent I will be here.

With Love,

Stella

__________________________________________________________

You rock. That's why Blockbuster's offering you one month of Blockbuster

Total Access, No Cost.

http://tc.deals. <http://tc.deals.yahoo.com/tc/blockbuster/text5.com>

yahoo.com/tc/blockbuster/text5.com

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Posted
Posted

Hi, I am hoping her special needs doc on Thursday will tell me who to go to

and what I can do. No she does not have ear tubes I posted about her

tonsils etc in another post. has had many impetigo infections on

her face due to her rubbing it so I really like the idea of the bacitracin,

I will defiantly ask him about that. Thank so much.

_____

From: [mailto: ] On Behalf

Of McDonnell

Sent: Tuesday, April 01, 2008 11:17 AM

To:

Subject: RE: Just need to vent and ask advice LONG I'm sorry

Hi ,

I'm so sorry that you had to go through such aggravation with that

allergist. Personally, I would dump this guy as quickly as possible and get

someone else- perhaps your developmental ped. would have a recommendation or

someone on the list serv?

For what it's worth, my son's ENT recommended Singulair 4mg. granules (mixed

w/ applesauce in the morning) and a teaspoon of Zyrtec at night for his

allergies. Does have ear tubes? How do her adnoids and tonsils

look? Finally, the ENT recommended that we put a little bit of bacitracin

ointment in 's nose (the vestibule/outer lining) first thing in the

morning and at night to prevent the bacteria from turning into something

more infectious that would require antibiotics. I really empathize, as our

was sick 4 times since Christmas with multiple sinus/ear infections

and it was exhausting for everyone going back and forth to the doctor. So

far, we've had an uneventful 2 weeks, plus with the spring, things should

get better. Ask your ENT about the above regimen- it may help your daughter.

Finally, the Zyrtec has a drowsy component, so it has really helped

sleep more soundly and longer!

Feel free to vent whenever you need to- that is what our group is for, to

support one another in good as well as challenging times. Good luck to you

and please keep us posted.

Best,

Mom to , 4 yrs. old

DS/PDD-NOS

To: @yahoogrou <mailto:%40yahoogroups.comFrom> ps.comFrom:

samanthanicolesclos <mailto:samanthanicolescloset%40cableusa.comDate>

et@...: Mon, 31 Mar 2008 20:32:10 -0700Subject:

Just need to vent and ask advice LONG I'm sorry

Hi, my name is and my daughter is , she is almost 5

yearsold. She has Ds and ASD. I read everything but do not post very much

(Ithink I will make up for that in this long post) but I just need to

ventbefore I explode and I figure that you all are about the only ones in

mylife right now that can maybe understand what I am going through. A

littlebackground. was born at 680 grams and 12.4 inches long, with

thatcomes multiple medical issues. However I keep getting well I think she

willgrow out of (insert medical problem here) next year when she gets

bigger.Well that has been every year since she was born. She eats NOTHING by

mouthdue to numerous medical issues, each one compounding the next. I think

Ihave seen almost every type of doctor known to Children's Hospital except

3different kinds. This last one is the one the broke the camels back so

tospeak. We were sent to an allergist. I have the first appointment and

ofcourse the doctor is 45 minutes late (ha ha) He then walks in and

proceedsto tell me my daughter has Ds, one day I swear I am going to act

allsurprised and yell at the doctor and deny that she does, anyways.. He

thentells me her asthma needs to get under control and I tell him I know

sawpulmo 2 weeks ago and we are working on that. He then says he does

notbelieve she has allergies that it is immune problems. I tell him

aspolitely as I can that I am there for allergy testing that ENT, pulmo

andspecials needs wants her tested. He then proceeds to tell me what

bloodtests I need to have done for immune testing. I again tell him why I

amthere to see an ALLERGIST to get ALLERGY testing. He then says. well

sinceyou are here it can not hurt to test her. They test her and she is

allergicto dust mites, 3 types of grass, 7 types of trees and pollen. He

then comesin and says well I guess she is allergic. Then he says well you

know shedoes not look autistic, she seems too happy and loving to be

autistic. Isaid well it was here at Children's Hospital Developmental

Department thatspent days testing her and they came up with that diagnosis.

He then saidhere is lab work to get done for immune testing and come back in

a month. Isaid ummm is there anything I can give her for her allergies. And

he saidwell she is already on nasonex. I said I know but it does not do

anythingfor her. He says again, well you know she has Ds. And I say yes I

knowwhat can I give her to help her allergies, he says well there is over

thecounter stuff. I said okay and what should I give her and how much, he

sayswell read the bottles. Ok she is almost 5 but only weighs 25 pounds.

Welljust read the bottle and I get and another reminder that she has Ds.

Okayhere is my complaint.. How come doctors think that because my child has

Dsthat they do not have the right to have some comfort in her life,

helprelieve the symptoms. I get these doctors that think by telling me she

hasDs well that should just explain everything and me go on my merry

littleway. They think by telling me things like she will grow out of..That I

willbe content and keep on going. But if she has not grown out of stuff

orsymptoms not being relived why do they not try and figure out WHY.

Justbecause she can not talk and complain to them about what is going on

doesnot mean that she does not need help. I made an appointment with

herprimary on Thursday to be able to sit down and talk to him but I think

thatI am going to end of crying and looking like I just can't handle it. It

isnot that I can not handle it I just feel like she is being pushed

throughwithout anyone figuring out what is going on. Any advice or comments

wouldgreatly be appreciated because I feel like I am losing it here and I

knowfrom reading that there are a number of you that have been there done

thatand your children are older. Thank you in advance.- [Non-text

portions of this message have been removed]

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Posted
Posted

, The first 2 ENT docs were worthless.The sleep study was a

joke that the 2 nd ENT sent me to.The sleep study center did not want

to do a sleep study. The 3rd ENT was great and not worried about any

trougle might get into.This doc was very thorough. no longer

snores.The first week he was so quiet when he sleept my daughter and

I kept checking on him to see of he was breathing.He had his tonsils

out the past July and so far he has not had his first running nose.

Usually he stayed constant with a runny nose. never had any ear

infections. I am glad we took out his extremely large tonsils also.

Keep pushing until you get a doctor you feel is listening about your

child. Good luch Cyndi B

>

> Yes snores and we know her tonsils are 3+ (kissing

tonsils) and her

> adenoids are huge and we are awaiting authorization for her 2nd

sleep study

> since the 1st one was a disaster. Trying to get an ENT to take

them out is

> another 3 year battle since they say she is too high risk for

surgery. I

> can say that I am thankful she has NEVER EVER EVER had an ear

infection. It

> is always upper respiratory, sinus or pneumonia. I think that if

her

> tonsils and adenoids were taken out it would be better and so does

every

> other doc I go to but I can't get ENT to agree and I have seen 3

different

> ones.

>

>

>

>

>

>

>

> _____

>

> From: [mailto: ]

On Behalf

> Of stellarah

> Sent: Tuesday, April 01, 2008 12:21 PM

> To:

> Subject: Re: Just need to vent and ask advice LONG I'm

sorry

>

>

>

> Does your child snore? About two years ago I notcied a was

> snoring at night. I told the doctor and of course had to see an

ent.

> She ended up having slightly enlarged tonsils. So they removed them

> along will her adnoids. During the same surgery she had tubes put

in

> her ears. After that we noticed her talking alittle more and

sleeping

> better. i don't know if this applies but it could be another avenue

> to try if it does.

>

>

> >

> > Hi! That is what I am hoping for when I see her special needs doc

> on

> > Thursday that he will refer me to a different allergist. He is

> pretty good

> > about that. He has sent me to 3 different ENT's trying to get

them

> to take

> > her tonsils out.

> >

> >

> >

> >

> >

> >

> >

> > _____

> >

> > From: @yahoogrou <mailto:%40yahoogroups.com>

ps.com

> [mailto:@yahoogrou <mailto:%40yahoogroups.com>

ps.com]

> On Behalf

> > Of ViPorier@

> > Sent: Tuesday, April 01, 2008 4:33 AM

> > To: @yahoogrou <mailto:%40yahoogroups.com>

ps.com

> > Subject: Re: Re: Just need to vent and ask advice

LONG

> I'm sorry

> >

> >

> >

> > Hi ,

> >

> > I am so sorry, I know that pain I went through that last May with

> my son at

> > an eye doctors appt. I called the office back the next day, and

> told them

> > that I was not pleased at all at this doctors behavior, and that

I

> wanted to

> > see

> > another doctor in the same office free of charge, they did so,

and

> the next

> > doctor was great. I also called his primary doctor who referred

> this jerk,

> > and let him know about it, and told him to please not refer him

to

> any of

> > his

> > other patients who have disabilities.

> >

> > Viola

> >

> > **************Create a Home Theater Like the Pros. Watch the

video

> on AOL

> > Home.

> > (http://home.

> > <http://home. <http://home.aol.com/diy/home-improvement-eric-

stromer?>

> aol.com/diy/home-improvement-eric-stromer?

> video=15 & ncid=aolhom0

> > 0030000000001>

> > aol.com/diy/home-improvement-eric-stromer?

> video=15 & ncid=aolhom00030000000001

> > )

> >

> >

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Share on other sites
Guest guest

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Posted
Posted

Welcome ,

I am Karyn, long time member but infrequent poster. I am mom to

who is 19 years old and has ds/autism and a whole host of other

issues including severe behavioral issues.

I have learned through our journey that falling apart in front of a

dr or other professional isn't a crime and is sometimes human.

Sometimes there is just no way to express how frustrated we are.

I have been accused by 's county caseworker of appearing too

competent sometimes and not showing how desperate a situation is. We

have also been the gamut of drs. I have learned and am still learning

how to express righteous indignation. A dear friend in the autism

community has a much more colorful term that I will spare you.

I just want you to konw that I empathize with where you are at and

know that you will continue moving on to get your daughter's needs

met. No matter how many thick headed people you meet along the way.

Karyn -Mom to , 19 ds/autism, etc., 7, r 3 1/2,

18 mos.

>

> Hi ,

>

> I'm so sorry that you had to go through such aggravation with that

allergist. Personally, I would dump this guy as quickly as possible

and get someone else- perhaps your developmental ped. would have a

recommendation or someone on the list serv?

>

> For what it's worth, my son's ENT recommended Singulair 4mg.

granules (mixed w/ applesauce in the morning) and a teaspoon of

Zyrtec at night for his allergies. Does have ear tubes? How

do her adnoids and tonsils look? Finally, the ENT recommended that we

put a little bit of bacitracin ointment in 's nose (the

vestibule/outer lining) first thing in the morning and at night to

prevent the bacteria from turning into something more infectious

that would require antibiotics. I really empathize, as our was

sick 4 times since Christmas with multiple sinus/ear infections and

it was exhausting for everyone going back and forth to the doctor.

So far, we've had an uneventful 2 weeks, plus with the spring, things

should get better. Ask your ENT about the above regimen- it may help

your daughter. Finally, the Zyrtec has a drowsy component, so it has

really helped sleep more soundly and longer!

>

> Feel free to vent whenever you need to- that is what our group is

for, to support one another in good as well as challenging times.

Good luck to you and please keep us posted.

>

> Best,

>

> Mom to , 4 yrs. old

> DS/PDD-NOS

>

>

>

> To: @...: samanthanicolescloset@...: Mon, 31 Mar 2008

20:32:10 -0700Subject: Just need to vent and ask advice

LONG I'm sorry

>

>

>

>

> Hi, my name is and my daughter is , she is almost

5 yearsold. She has Ds and ASD. I read everything but do not post

very much (Ithink I will make up for that in this long post) but I

just need to ventbefore I explode and I figure that you all are about

the only ones in mylife right now that can maybe understand what I am

going through. A littlebackground. was born at 680 grams and

12.4 inches long, with thatcomes multiple medical issues. However I

keep getting well I think she willgrow out of (insert medical problem

here) next year when she gets bigger.Well that has been every year

since she was born. She eats NOTHING by mouthdue to numerous medical

issues, each one compounding the next. I think Ihave seen almost

every type of doctor known to Children's Hospital except 3different

kinds. This last one is the one the broke the camels back so tospeak.

We were sent to an allergist. I have the first appointment and

ofcourse the doctor is 45 minutes late (ha ha) He then walks in and

proceedsto tell me my daughter has Ds, one day I swear I am going to

act allsurprised and yell at the doctor and deny that she does,

anyways.. He thentells me her asthma needs to get under control and I

tell him I know sawpulmo 2 weeks ago and we are working on that. He

then says he does notbelieve she has allergies that it is immune

problems. I tell him aspolitely as I can that I am there for allergy

testing that ENT, pulmo andspecials needs wants her tested. He then

proceeds to tell me what bloodtests I need to have done for immune

testing. I again tell him why I amthere to see an ALLERGIST to get

ALLERGY testing. He then says. well sinceyou are here it can not hurt

to test her. They test her and she is allergicto dust mites, 3 types

of grass, 7 types of trees and pollen. He then comesin and says well

I guess she is allergic. Then he says well you know shedoes not look

autistic, she seems too happy and loving to be autistic. Isaid well

it was here at Children's Hospital Developmental Department thatspent

days testing her and they came up with that diagnosis. He then

saidhere is lab work to get done for immune testing and come back in

a month. Isaid ummm is there anything I can give her for her

allergies. And he saidwell she is already on nasonex. I said I know

but it does not do anythingfor her. He says again, well you know she

has Ds. And I say yes I knowwhat can I give her to help her

allergies, he says well there is over thecounter stuff. I said okay

and what should I give her and how much, he sayswell read the

bottles. Ok she is almost 5 but only weighs 25 pounds. Welljust read

the bottle and I get and another reminder that she has Ds. Okayhere

is my complaint.. How come doctors think that because my child has

Dsthat they do not have the right to have some comfort in her life,

helprelieve the symptoms. I get these doctors that think by telling

me she hasDs well that should just explain everything and me go on my

merry littleway. They think by telling me things like she will grow

out of..That I willbe content and keep on going. But if she has not

grown out of stuff orsymptoms not being relived why do they not try

and figure out WHY. Justbecause she can not talk and complain to them

about what is going on doesnot mean that she does not need help. I

made an appointment with herprimary on Thursday to be able to sit

down and talk to him but I think thatI am going to end of crying and

looking like I just can't handle it. It isnot that I can not handle

it I just feel like she is being pushed throughwithout anyone

figuring out what is going on. Any advice or comments wouldgreatly be

appreciated because I feel like I am losing it here and I knowfrom

reading that there are a number of you that have been there done

thatand your children are older. Thank you in advance.- [Non-

text portions of this message have been removed]

>

>

>

>

>

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

,

I love 's pediatrician, now his general practioner, his

cardiologist, and several other drs along the way, But, they are all

terrible about knowing who to refer us to for the things I really

needed. For that I turn to parents of kids with autism, not

asperger's or less impaired or other families with a kid like my son.

Karyn

> >

> > Hi! That is what I am hoping for when I see her special needs doc

> on

> > Thursday that he will refer me to a different allergist. He is

> pretty good

> > about that. He has sent me to 3 different ENT's trying to get

them

> to take

> > her tonsils out.

> >

> >

> >

> >

> >

> >

> >

> > _____

> >

> > From: @yahoogrou <mailto:%40yahoogroups.com>

ps.com

> [mailto:@yahoogrou <mailto:%40yahoogroups.com>

ps.com]

> On Behalf

> > Of ViPorier@

> > Sent: Tuesday, April 01, 2008 4:33 AM

> > To: @yahoogrou <mailto:%40yahoogroups.com>

ps.com

> > Subject: Re: Re: Just need to vent and ask advice

LONG

> I'm sorry

> >

> >

> >

> > Hi ,

> >

> > I am so sorry, I know that pain I went through that last May with

> my son at

> > an eye doctors appt. I called the office back the next day, and

> told them

> > that I was not pleased at all at this doctors behavior, and that

I

> wanted to

> > see

> > another doctor in the same office free of charge, they did so,

and

> the next

> > doctor was great. I also called his primary doctor who referred

> this jerk,

> > and let him know about it, and told him to please not refer him

to

> any of

> > his

> > other patients who have disabilities.

> >

> > Viola

> >

> > **************Create a Home Theater Like the Pros. Watch the

video

> on AOL

> > Home.

> > (http://home.

> > <http://home. <http://home.aol.com/diy/home-improvement-eric-

stromer?>

> aol.com/diy/home-improvement-eric-stromer?

> video=15 & ncid=aolhom0

> > 0030000000001>

> > aol.com/diy/home-improvement-eric-stromer?

> video=15 & ncid=aolhom00030000000001

> > )

> >

> >

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Share on other sites
Guest guest

Guest guest

Posted
Posted

After years of woeful infections in nose and sinuses and years of antibiotic

therapy - Elie was on one antibiotic and then another at one point for 18

onths straight- I have learned from some new docs about nasal saline

therapy. We use a nasal saline spray very often for Elie. I also buy

nasal saline from AYRES in a gel form for his nostrils for daytime while he

isn't home. I also use (for me) the nasal washing thru to the sinuses which

Dr. Oz recommends. Voila - no more sinus infections, no nasal discharges,

no post nasal drip. IT is like magic. And there are no antibiotics. And

it is cheap and easy to do. No side effects, no allergies. If it doesn't

work, nothing lost. I make my own saline - water and salt boiled together

and cooled.

> Welcome ,

> I am Karyn, long time member but infrequent poster. I am mom to

> who is 19 years old and has ds/autism and a whole host of other

> issues including severe behavioral issues.

> I have learned through our journey that falling apart in front of a

> dr or other professional isn't a crime and is sometimes human.

> Sometimes there is just no way to express how frustrated we are.

> I have been accused by 's county caseworker of appearing too

> competent sometimes and not showing how desperate a situation is. We

> have also been the gamut of drs. I have learned and am still learning

> how to express righteous indignation. A dear friend in the autism

> community has a much more colorful term that I will spare you.

> I just want you to konw that I empathize with where you are at and

> know that you will continue moving on to get your daughter's needs

> met. No matter how many thick headed people you meet along the way.

>

> Karyn -Mom to , 19 ds/autism, etc., 7, r 3 1/2,

> 18 mos.

>

>

> >

> > Hi ,

> >

> > I'm so sorry that you had to go through such aggravation with that

> allergist. Personally, I would dump this guy as quickly as possible

> and get someone else- perhaps your developmental ped. would have a

> recommendation or someone on the list serv?

> >

> > For what it's worth, my son's ENT recommended Singulair 4mg.

> granules (mixed w/ applesauce in the morning) and a teaspoon of

> Zyrtec at night for his allergies. Does have ear tubes? How

> do her adnoids and tonsils look? Finally, the ENT recommended that we

> put a little bit of bacitracin ointment in 's nose (the

> vestibule/outer lining) first thing in the morning and at night to

> prevent the bacteria from turning into something more infectious

> that would require antibiotics. I really empathize, as our was

> sick 4 times since Christmas with multiple sinus/ear infections and

> it was exhausting for everyone going back and forth to the doctor.

> So far, we've had an uneventful 2 weeks, plus with the spring, things

> should get better. Ask your ENT about the above regimen- it may help

> your daughter. Finally, the Zyrtec has a drowsy component, so it has

> really helped sleep more soundly and longer!

> >

> > Feel free to vent whenever you need to- that is what our group is

> for, to support one another in good as well as challenging times.

> Good luck to you and please keep us posted.

> >

> > Best,

> >

> > Mom to , 4 yrs. old

> > DS/PDD-NOS

> >

> >

> >

> > To: @...: samanthanicolescloset@...: Mon, 31 Mar 2008

> 20:32:10 -0700Subject: Just need to vent and ask advice

> LONG I'm sorry

> >

> >

> >

> >

> > Hi, my name is and my daughter is , she is almost

> 5 yearsold. She has Ds and ASD. I read everything but do not post

> very much (Ithink I will make up for that in this long post) but I

> just need to ventbefore I explode and I figure that you all are about

> the only ones in mylife right now that can maybe understand what I am

> going through. A littlebackground. was born at 680 grams and

> 12.4 inches long, with thatcomes multiple medical issues. However I

> keep getting well I think she willgrow out of (insert medical problem

> here) next year when she gets bigger.Well that has been every year

> since she was born. She eats NOTHING by mouthdue to numerous medical

> issues, each one compounding the next. I think Ihave seen almost

> every type of doctor known to Children's Hospital except 3different

> kinds. This last one is the one the broke the camels back so tospeak.

> We were sent to an allergist. I have the first appointment and

> ofcourse the doctor is 45 minutes late (ha ha) He then walks in and

> proceedsto tell me my daughter has Ds, one day I swear I am going to

> act allsurprised and yell at the doctor and deny that she does,

> anyways.. He thentells me her asthma needs to get under control and I

> tell him I know sawpulmo 2 weeks ago and we are working on that. He

> then says he does notbelieve she has allergies that it is immune

> problems. I tell him aspolitely as I can that I am there for allergy

> testing that ENT, pulmo andspecials needs wants her tested. He then

> proceeds to tell me what bloodtests I need to have done for immune

> testing. I again tell him why I amthere to see an ALLERGIST to get

> ALLERGY testing. He then says. well sinceyou are here it can not hurt

> to test her. They test her and she is allergicto dust mites, 3 types

> of grass, 7 types of trees and pollen. He then comesin and says well

> I guess she is allergic. Then he says well you know shedoes not look

> autistic, she seems too happy and loving to be autistic. Isaid well

> it was here at Children's Hospital Developmental Department thatspent

> days testing her and they came up with that diagnosis. He then

> saidhere is lab work to get done for immune testing and come back in

> a month. Isaid ummm is there anything I can give her for her

> allergies. And he saidwell she is already on nasonex. I said I know

> but it does not do anythingfor her. He says again, well you know she

> has Ds. And I say yes I knowwhat can I give her to help her

> allergies, he says well there is over thecounter stuff. I said okay

> and what should I give her and how much, he sayswell read the

> bottles. Ok she is almost 5 but only weighs 25 pounds. Welljust read

> the bottle and I get and another reminder that she has Ds. Okayhere

> is my complaint.. How come doctors think that because my child has

> Dsthat they do not have the right to have some comfort in her life,

> helprelieve the symptoms. I get these doctors that think by telling

> me she hasDs well that should just explain everything and me go on my

> merry littleway. They think by telling me things like she will grow

> out of..That I willbe content and keep on going. But if she has not

> grown out of stuff orsymptoms not being relived why do they not try

> and figure out WHY. Justbecause she can not talk and complain to them

> about what is going on doesnot mean that she does not need help. I

> made an appointment with herprimary on Thursday to be able to sit

> down and talk to him but I think thatI am going to end of crying and

> looking like I just can't handle it. It isnot that I can not handle

> it I just feel like she is being pushed throughwithout anyone

> figuring out what is going on. Any advice or comments wouldgreatly be

> appreciated because I feel like I am losing it here and I knowfrom

> reading that there are a number of you that have been there done

> thatand your children are older. Thank you in advance.- [Non-

> text portions of this message have been removed]

> >

> >

> >

> >

> >

> >

> >

> >

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Posted
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You know that ignorance runs rampant even with Drs. I would ask my ped for

a recommendation for another Ent or allergist and tell him you would like to

find one that has experience with kids with DS or special needs. I would

not allow an unexperienced or old school dr. to allow me to feel bad about

trying to get help for my child, just suck it up to his lack of knowledge!

Move on or you could choose to educate him by sending updated information to

him to read so he can be better informed and equipped to deal with your child

next time if you so choose to stick with this dr. There are more fish in the

pond and certainly you have to choose which ones you want to fry and which

ones you want to toss back in.

**************Planning your summer road trip? Check out AOL Travel Guides.

(http://travel.aol.com/travel-guide/united-states?ncid=aoltrv00030000000016)

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