UPDATE

[Guest guest]

, Sue, and anyone else with the dual diagnosis of DS and ASD,

 

I was wondering what behaviors you observed in your child when they were younger

when you suspected ASD. Adena shows some signs of ASD but I don't know how much

is due to DS. She does some stimming behaviors and always has since she was

about 13 months old.  She has difficulty with some transitions and it is a big

battle to do certain things she does not want to do such as brushing hair,

putting on clothes, etc.  However, at school, she lets one of her teachers brush

her hair and even fix it cute!  I am always hesitant to go try new things,

espcially just taking her and her sister. I was very apprehensive about taking

her to Sesame Street Live and throw away all that money if we had to walk out so

we sat in the nosebleed section but she was entranced!  I usually won't go many

places with her and her sister without my husband or my mom to help.  But Adena

is very social and she makes great eye contact. She has great joint attention

and she is very

verbal (even if most people can't understand her).  So she has only a couple of

the red flags but as she gets older, she has more difficulty with transitions

and has problems outside of her routine.

 

Thanks,

 

Karyn

Mom to Adena, 4 1/2 and , 1

[Guest guest]

Karyn,

For our part, Karrie's symptoms started occuring around age 4...she lost the

ability to copy spelling words, then she wasn't able to read the 40 or so words

she had. Toileting, speech, eating soon followed. She still doesn't let anyone

touch her hair unless she has been " notified " for about 15 minutes before.

Somedays she gets out of the house with her hair " smoothed " down, since she will

scream, hit, bite, and scratch.

After she was dx'd at KKI as having bipolar and was placed on all those meds,

she just got worse. Today, at 13, she is social when she isn't in an overwhelmed

state. She doesn't make much eye contact. She is very verbal and her speech is

clear enough where most people understand her. She is continent during the day,

but still has no bladder control when she's sleeping...the doctors say she

probable will never be. I still am holding out hope for her!! She's proved them

wrong on more than one occasion!!

Make sure you document what you see that concerns you...date, what was happening

before and her reaction to it. Video tape her if you can. These are the things

that helped us...

Sue mom to Kate 20 and Karrie 13 w/ds and mild autism

---- Karyn <thebombtexas@...> wrote:

> , Sue, and anyone else with the dual diagnosis of DS and ASD,

>  

> I was wondering what behaviors you observed in your child when they were

younger when you suspected ASD. Adena shows some signs of ASD but I don't know

how much is due to DS. She does some stimming behaviors and always has since she

was about 13 months old.  She has difficulty with some transitions and it is a

big battle to do certain things she does not want to do such as brushing hair,

putting on clothes, etc.  However, at school, she lets one of her teachers

brush her hair and even fix it cute!  I am always hesitant to go try new

things, espcially just taking her and her sister. I was very apprehensive about

taking her to Sesame Street Live and throw away all that money if we had to walk

out so we sat in the nosebleed section but she was entranced!  I usually won't

go many places with her and her sister without my husband or my mom to help. 

But Adena is very social and she makes great eye contact. She has great joint

attention and she is very

> verbal (even if most people can't understand her).  So she has only a couple

of the red flags but as she gets older, she has more difficulty with transitions

and has problems outside of her routine.

>  

> Thanks,

>  

> Karyn

> Mom to Adena, 4 1/2 and , 1

>

>

>

>

>

[Guest guest]

Sue,

I'm glad you shared your experience with me. It was what I needed to take a

critical look at KKI since I had trusted them so much since was

born. I wonder how many other children are misdiagnosed? When I started

the other list (behaviors but not autism with DS list), I heard from many

other parents who took their kids to KKI, had similar behaviors as ,

yet didn't have the ASD diagnosis.

The main thing I want to advocate strongly for is for parents to push for

assessments. If your child has ANY signs of autism, get an autism

specialist (not a DS specialist) to do an assessment. I use to fill out

these forms for Dr. Capone and I never saw him looking at them when I handed

them over. I'm betting he never did pay attention to them.

Anyway...here is what we saw with :

Lining things up (since age 18 months)

Hyperactivity when younger

Lack of eye contact

overstimulated in environments which leds to meltdowns (more than the stop,

drop and flop of DS)

sensory issues

apraxia and other language difficulties

Major isolation issues

Ritualistic behaviors

Lack of interest in activities (i.e. zoo, aquirium)

perseveration

preoccupation with objects (Green Eggs and Ham book, watching a particular

scene in a video over and over)

Need for sameness and routines

and looking back (for DS), not being lovable, which today i can say he

selectively is!

Good Luck with Karrie's IEP... really regressed after starting middle

school in West Virginia where they are years and years behind Virginia in

inclusion. The good teachers and administrators go to Virginia or land

to teach/work where the pay is so much better -I can't blame them. I'm

happy to hear you have support..that is so important. Keep me posted on

what happens!

Re: Update

> ,

>

> I know what you mean about not getting the right diagnosis early...Karrie

> was misdiagnosed at KKI (and we flew there from St. Louis for each

> visit!!). I was told she had bipolar. She was started on meds for bipolar.

> Ended up on 8 different meds, mostly to treat the side effects of the

> other meds. She also ended up with 14 new medical diagnosis. Thank God I

> found a doctor in St. Louis who correctly diagnosed her with ASD. She now

> is med free and most of the other medical dx's have disappeared.

>

> Karrie now has a cyst in her brain that is growing. It has been lying

> dormant since her birth and for some reason, it has just started to grow.

> It presses on some cranial nerves. I'm scared silly, but have to have

> faith.

>

> Karrie has her 4th IEP this year on Friday. I found a woman who offered to

> come to the IEP with me. She used to work with an agency here that is

> supported by grants from the state and federal boards of education. The

> agency promotes inclusion and this woman has already told me that the

> state board will take care of any " issues " that the district throws in the

> way of getting Karrie out of the program she is in. Since she moved to the

> middle school this year, she was placed in a life skills class. The focus

> is on personal hygiene and recycling. I have made it clear that she is not

> to be doing those things at school, since I am her mom and have made sure

> she is independent with hygiene. As far as recycling, she is to be doing

> academics. So now, she does 2 worksheets a day and then colors the rest of

> the day. She has already met all of her IEP goals for the year.

>

> How did I get so far off target here??? Anyway, great news about the

> respirdal!!

> Hopefully you will see a continuance of this wonderful progress!!! Keep us

> informed!

>

> Sue mom to Kate 20 and Karrie 13 w/ds and mild autism

> --

>

>

> ---- CSBC <cindysue@...> wrote:

>> Happy Belated Thanksgiving everyone! I love having these extra long

>> weekends with . We both are going to hate getting back into our

>> weekday routines.

>>

>> Anyway, thought I would take a few minutes to do a update. He's

>> been off all behavioral medications for 1 1/2 years, give or take a

>> month. Slowly, he has reverted back to needing medication. We are

>> trying respirdal again. I also am having a psychiatrist treat him

>> instead of his DS doctor who is a neurologist.

>>

>> KKI did assess and gave him the ASD diagnosis. I am very

>> dissapointed that Dr. Capone at KKI didn't have him assessed when I asked

>> about all his behaviors going way back to when he was 2 years old. I

>> knew, my family knew and somewhere along the line, the professional

>> experts missed the boat. He had originally been diagnosed by a local

>> psychologist 3 years ago when we moved here. At the time, 's KKI

>> doctors disagreed. How much did miss out on therapy wise by not

>> being properly diagnosed years ago??

>>

>> At the same time, KKI was treating for his seizures. He had over

>> 100 in one year and all the neurlogist at KKI did was increase his

>> seizure meds. When I told him I found a local neurlogist to see him,

>> then he wanted to switch mediations. I knew I would not take

>> back to the neurology clinic at KKI ..the local neurologist has been most

>> helpful. He also coordinated seeing a psychiatrist- called him

>> ahead of time b/c 's needs are so complex.

>>

>> I went to see the psychiatrist first for obvious reasons. I cautioned

>> him that would give us a hard time just getting into the office

>> and would probably refuse to go back to an exam room. I was right...so

>> the psychiatrist saw in the lobby (b/c of 's behaviors, he

>> wanted him to be the last appointment of the day..so it was no big deal

>> to be seen in the lobby).

>>

>> So is back on respirdal. He told his babysitter that mommy and

>> daddy took him to the doctor for his head, he got pills and now feels

>> better?!?!?! He started on thanksgiving eve..yesterday he asked me for

>> 13 sheets of paper and a pen. He wrote his numbers 1-13 and then the

>> alphabet. He also drew pictures of various people, dogs and our house.

>> I don't know if this is the medicine or what. I'm anxious for him to go

>> back to school to see how he does there. We see the doctor again on

>> Tuesday.

>>

>>

>>

>>

>>

>>

[Guest guest]

I forgot one thing --- MAJOR transition issues.

[Guest guest]

I know that my daughter said that many children with DS have autistic like

behaviors but not autism.  My Micah has always liked to line his men up and

doesn't like anyone touching his head or face.  Food texture issues. Language

difficulties etc. but I think a lot of kids with DS have these issues and not

ASD.  It makes it very hard for parents to know exactly what they are looking

at.  Maybe all kids with DS who have these behaviors should be screened as a

matter of course.  We want to do what is best for our kids and are relying on

the experts and even they dont know.  I was not thrilled with KKI either.  Dr.

Capone wanted to put Micah on Benadryl for his sleep apnea until they figured

out what to do for him.  They say he won't tolerate c-pap and I think they

might be right,.  There was talk of using a pallete spreader but dentist was

afraid he would take it out and choke.  Benadryl does not seem to me to be a

good answer.  Why drug someone who has apnea.  Doesn't that make the pallete

even more likely to be flaccid?  Doesnt make sense to me.  In  addition to

not really finding out anything I got left with a big bill because my insurance

wouldn't cover much of it.  I can't believe how much we were charged for an

hours visit.  Won't be going back.  Already called and cancelled for this

year.

 

Loree

Re: Update

  Sue,

I'm glad you shared your experience with me. It was what I needed to take a

critical look at KKI since I had trusted them so much since was

born. I wonder how many other children are misdiagnosed? When I started

the other list (behaviors but not autism with DS list), I heard from many

other parents who took their kids to KKI, had similar behaviors as ,

yet didn't have the ASD diagnosis.

The main thing I want to advocate strongly for is for parents to push for

assessments. If your child has ANY signs of autism, get an autism

specialist (not a DS specialist) to do an assessment. I use to fill out

these forms for Dr. Capone and I never saw him looking at them when I handed

them over. I'm betting he never did pay attention to them.

Anyway...here is what we saw with :

Lining things up (since age 18 months)

Hyperactivity when younger

Lack of eye contact

overstimulated in environments which leds to meltdowns (more than the stop,

drop and flop of DS)

sensory issues

apraxia and other language difficulties

Major isolation issues

Ritualistic behaviors

Lack of interest in activities (i.e. zoo, aquirium)

perseveration

preoccupation with objects (Green Eggs and Ham book, watching a particular

scene in a video over and over)

Need for sameness and routines

and looking back (for DS), not being lovable, which today i can say he

selectively is!

Good Luck with Karrie's IEP... really regressed after starting middle

school in West Virginia where they are years and years behind Virginia in

inclusion. The good teachers and administrators go to Virginia or land

to teach/work where the pay is so much better -I can't blame them. I'm

happy to hear you have support..that is so important. Keep me posted on

what happens!

Re: Update

& gt; ,

& gt;

& gt; I know what you mean about not getting the right diagnosis early...Karrie

& gt; was misdiagnosed at KKI (and we flew there from St. Louis for each

& gt; visit!!). I was told she had bipolar. She was started on meds for bipolar.

& gt; Ended up on 8 different meds, mostly to treat the side effects of the

& gt; other meds. She also ended up with 14 new medical diagnosis. Thank God I

& gt; found a doctor in St. Louis who correctly diagnosed her with ASD. She now

& gt; is med free and most of the other medical dx's have disappeared.

& gt;

& gt; Karrie now has a cyst in her brain that is growing. It has been lying

& gt; dormant since her birth and for some reason, it has just started to grow.

& gt; It presses on some cranial nerves. I'm scared silly, but have to have

& gt; faith.

& gt;

& gt; Karrie has her 4th IEP this year on Friday. I found a woman who offered to

& gt; come to the IEP with me. She used to work with an agency here that is

& gt; supported by grants from the state and federal boards of education. The

& gt; agency promotes inclusion and this woman has already told me that the

& gt; state board will take care of any " issues " that the district throws in the

& gt; way of getting Karrie out of the program she is in. Since she moved to the

& gt; middle school this year, she was placed in a life skills class. The focus

& gt; is on personal hygiene and recycling. I have made it clear that she is not

& gt; to be doing those things at school, since I am her mom and have made sure

& gt; she is independent with hygiene. As far as recycling, she is to be doing

& gt; academics. So now, she does 2 worksheets a day and then colors the rest of

& gt; the day. She has already met all of her IEP goals for the year.

& gt;

& gt; How did I get so far off target here??? Anyway, great news about the

& gt; respirdal!!

& gt; Hopefully you will see a continuance of this wonderful progress!!! Keep us

& gt; informed!

& gt;

& gt; Sue mom to Kate 20 and Karrie 13 w/ds and mild autism

& gt; --

& gt;

& gt;

& gt; ---- CSBC & lt;cindysue@... & gt; wrote:

& gt; & gt; Happy Belated Thanksgiving everyone! I love having these extra long

& gt; & gt; weekends with . We both are going to hate getting back into our

& gt; & gt; weekday routines.

& gt; & gt;

& gt; & gt; Anyway, thought I would take a few minutes to do a update. He's

& gt; & gt; been off all behavioral medications for 1 1/2 years, give or take a

& gt; & gt; month. Slowly, he has reverted back to needing medication. We are

& gt; & gt; trying respirdal again. I also am having a psychiatrist treat him

& gt; & gt; instead of his DS doctor who is a neurologist.

& gt; & gt;

& gt; & gt; KKI did assess and gave him the ASD diagnosis. I am very

& gt; & gt; dissapointed that Dr. Capone at KKI didn't have him assessed when I

asked

& gt; & gt; about all his behaviors going way back to when he was 2 years old. I

& gt; & gt; knew, my family knew and somewhere along the line, the professional

& gt; & gt; experts missed the boat. He had originally been diagnosed by a local

& gt; & gt; psychologist 3 years ago when we moved here. At the time, 's KKI

& gt; & gt; doctors disagreed. How much did miss out on therapy wise by not

& gt; & gt; being properly diagnosed years ago??

& gt; & gt;

& gt; & gt; At the same time, KKI was treating for his seizures. He had

over

& gt; & gt; 100 in one year and all the neurlogist at KKI did was increase his

& gt; & gt; seizure meds. When I told him I found a local neurlogist to see him,

& gt; & gt; then he wanted to switch mediations. I knew I would not take

& gt; & gt; back to the neurology clinic at KKI ..the local neurologist has been

most

& gt; & gt; helpful. He also coordinated seeing a psychiatrist- called him

& gt; & gt; ahead of time b/c 's needs are so complex.

& gt; & gt;

& gt; & gt; I went to see the psychiatrist first for obvious reasons. I cautioned

& gt; & gt; him that would give us a hard time just getting into the office

& gt; & gt; and would probably refuse to go back to an exam room. I was right...so

& gt; & gt; the psychiatrist saw in the lobby (b/c of 's behaviors,

he

& gt; & gt; wanted him to be the last appointment of the day..so it was no big deal

& gt; & gt; to be seen in the lobby).

& gt; & gt;

& gt; & gt; So is back on respirdal. He told his babysitter that mommy and

& gt; & gt; daddy took him to the doctor for his head, he got pills and now feels

& gt; & gt; better?!?!?! He started on thanksgiving eve..yesterday he asked me for

& gt; & gt; 13 sheets of paper and a pen. He wrote his numbers 1-13 and then the

& gt; & gt; alphabet. He also drew pictures of various people, dogs and our house.

& gt; & gt; I don't know if this is the medicine or what. I'm anxious for him to go

& gt; & gt; back to school to see how he does there. We see the doctor again on

& gt; & gt; Tuesday.

& gt; & gt;

& gt; & gt;

& gt; & gt;

& gt; & gt;

& gt; & gt;

& gt; & gt;

[Guest guest]

Re: Update

> ,

>

> I know what you mean about not getting the right diagnosis early...Karrie

> was misdiagnosed at KKI (and we flew there from St. Louis for each

> visit!!). I was told she had bipolar. She was started on meds for bipolar.

> Ended up on 8 different meds, mostly to treat the side effects of the

> other meds. She also ended up with 14 new medical diagnosis. Thank God I

> found a doctor in St. Louis who correctly diagnosed her with ASD. She now

> is med free and most of the other medical dx's have disappeared.

>

> Karrie now has a cyst in her brain that is growing. It has been lying

> dormant since her birth and for some reason, it has just started to grow.

> It presses on some cranial nerves. I'm scared silly, but have to have

> faith.

>

> Karrie has her 4th IEP this year on Friday. I found a woman who offered to

> come to the IEP with me. She used to work with an agency here that is

> supported by grants from the state and federal boards of education. The

> agency promotes inclusion and this woman has already told me that the

> state board will take care of any " issues " that the district throws in the

> way of getting Karrie out of the program she is in. Since she moved to the

> middle school this year, she was placed in a life skills class. The focus

> is on personal hygiene and recycling. I have made it clear that she is not

> to be doing those things at school, since I am her mom and have made sure

> she is independent with hygiene. As far as recycling, she is to be doing

> academics. So now, she does 2 worksheets a day and then colors the rest of

> the day. She has already met all of her IEP goals for the year.

>

> How did I get so far off target here??? Anyway, great news about the

> respirdal!!

> Hopefully you will see a continuance of this wonderful progress!!! Keep us

> informed!

>

> Sue mom to Kate 20 and Karrie 13 w/ds and mild autism

> --

>

>

> ---- CSBC <cindysue@...> wrote:

>> Happy Belated Thanksgiving everyone! I love having these extra long

>> weekends with . We both are going to hate getting back into our

>> weekday routines.

>>

>> Anyway, thought I would take a few minutes to do a update. He's

>> been off all behavioral medications for 1 1/2 years, give or take a

>> month. Slowly, he has reverted back to needing medication. We are

>> trying respirdal again. I also am having a psychiatrist treat him

>> instead of his DS doctor who is a neurologist.

>>

>> KKI did assess and gave him the ASD diagnosis. I am very

>> dissapointed that Dr. Capone at KKI didn't have him assessed when I asked

>> about all his behaviors going way back to when he was 2 years old. I

>> knew, my family knew and somewhere along the line, the professional

>> experts missed the boat. He had originally been diagnosed by a local

>> psychologist 3 years ago when we moved here. At the time, 's KKI

>> doctors disagreed. How much did miss out on therapy wise by not

>> being properly diagnosed years ago??

>>

>> At the same time, KKI was treating for his seizures. He had over

>> 100 in one year and all the neurlogist at KKI did was increase his

>> seizure meds. When I told him I found a local neurlogist to see him,

>> then he wanted to switch mediations. I knew I would not take

>> back to the neurology clinic at KKI ..the local neurologist has been most

>> helpful. He also coordinated seeing a psychiatrist- called him

>> ahead of time b/c 's needs are so complex.

>>

>> I went to see the psychiatrist first for obvious reasons. I cautioned

>> him that would give us a hard time just getting into the office

>> and would probably refuse to go back to an exam room. I was right...so

>> the psychiatrist saw in the lobby (b/c of 's behaviors, he

>> wanted him to be the last appointment of the day..so it was no big deal

>> to be seen in the lobby).

>>

>> So is back on respirdal. He told his babysitter that mommy and

>> daddy took him to the doctor for his head, he got pills and now feels

>> better?!?!?! He started on thanksgiving eve..yesterday he asked me for

>> 13 sheets of paper and a pen. He wrote his numbers 1-13 and then the

>> alphabet. He also drew pictures of various people, dogs and our house.

>> I don't know if this is the medicine or what. I'm anxious for him to go

>> back to school to see how he does there. We see the doctor again on

>> Tuesday.

>>

>>

>>

>>

>>

>>

[Guest guest]

,

Aren't some of the items you listed symptoms of intellectual delays, but not

necessarily ASD? Liam has some of them, but he has always maintained eye

contact and has always been loving. Some of these traits I chalk up to OCD,

like lining things up. Liam is obsessed with paper and notebooks. He will go

straight for the stationary aisle in any store. He's obsessed with a notebook

at CVS that costs $11.59 -- I will NOT spend $12. for a notebook, when I can go

to the 99 cent store and buy in bulk! He's never been motivated by food, but

offer him paper and he'll do almost anything you ask.

He was hyperactive when younger, but all the little boys in my family were. His

behavior was scarey over the summer, which motivated me to find help (we have an

appointment next month for an eval), but his behavior in school has dramatically

improved. He now gets a 50 out of 50 most days. That sort of bothers me

because we don't know why. His sensory issues are improving. Haircuts are

getting better. A year ago it took 4 people to hold him down for a blood draw.

Now he sits and lets the phlebotomist take the blood. Apraxia has always been a

big problem for him, but it's also in my family. It's not just the extra

chromosone that causes problems.

This job is so hard sometimes. We get what we think is the best help for our

kids and it doesn't always help. I'm going through a time of 'professional'

fatigue. The nurse at his school drives me crazy! She's so critical about

every little thing. I got frantic calls at work about 'white paper in his ear'

his week. The nurse told me that the teacher, the aid and the unit coordinator

for the site (sort of a mini principal) were all concerned. I told her I saw

him pick up a Qtip and took it away from him, but maybe he used one & it's

cotton. I then got a lecture on ear hygiene and she once again told me to take

him to the doctor. I asked her to try and remove it, but got " Oh no. I

couldn't do that. " When he got home it was gone. Once a week or so she tells

me to take him to the doctor. We go alot, but she makes me feel negligent.

Now I'm gonna worry that I may have missed ASD!

Kathy, Liam's mom (11, ds, diabetes, asthma)

Re: Update

Sue,

I'm glad you shared your experience with me. It was what I needed to take a

critical look at KKI since I had trusted them so much since was

born. I wonder how many other children are misdiagnosed? When I started

the other list (behaviors but not autism with DS list), I heard from many

other parents who took their kids to KKI, had similar behaviors as ,

yet didn't have the ASD diagnosis.

The main thing I want to advocate strongly for is for parents to push for

assessments. If your child has ANY signs of autism, get an autism

specialist (not a DS specialist) to do an assessment. I use to fill out

these forms for Dr. Capone and I never saw him looking at them when I handed

them over. I'm betting he never did pay attention to them.

Anyway...here is what we saw with :

Lining things up (since age 18 months)

Hyperactivity when younger

Lack of eye contact

overstimulated in environments which leds to meltdowns (more than the stop,

drop and flop of DS)

sensory issues

apraxia and other language difficulties

Major isolation issues

Ritualistic behaviors

Lack of interest in activities (i.e. zoo, aquirium)

perseveration

preoccupation with objects (Green Eggs and Ham book, watching a particular

scene in a video over and over)

Need for sameness and routines

and looking back (for DS), not being lovable, which today i can say he

selectively is!

Good Luck with Karrie's IEP... really regressed after starting middle

school in West Virginia where they are years and years behind Virginia in

inclusion. The good teachers and administrators go to Virginia or land

to teach/work where the pay is so much better -I can't blame them. I'm

happy to hear you have support..that is so important. Keep me posted on

what happens!

Re: Update

> ,

>

> I know what you mean about not getting the right diagnosis early...Karrie

> was misdiagnosed at KKI (and we flew there from St. Louis for each

> visit!!). I was told she had bipolar. She was started on meds for bipolar.

> Ended up on 8 different meds, mostly to treat the side effects of the

> other meds. She also ended up with 14 new medical diagnosis. Thank God I

> found a doctor in St. Louis who correctly diagnosed her with ASD. She now

> is med free and most of the other medical dx's have disappeared.

>

> Karrie now has a cyst in her brain that is growing. It has been lying

> dormant since her birth and for some reason, it has just started to grow.

> It presses on some cranial nerves. I'm scared silly, but have to have

> faith.

>

> Karrie has her 4th IEP this year on Friday. I found a woman who offered to

> come to the IEP with me. She used to work with an agency here that is

> supported by grants from the state and federal boards of education. The

> agency promotes inclusion and this woman has already told me that the

> state board will take care of any " issues " that the district throws in the

> way of getting Karrie out of the program she is in. Since she moved to the

> middle school this year, she was placed in a life skills class. The focus

> is on personal hygiene and recycling. I have made it clear that she is not

> to be doing those things at school, since I am her mom and have made sure

> she is independent with hygiene. As far as recycling, she is to be doing

> academics. So now, she does 2 worksheets a day and then colors the rest of

> the day. She has already met all of her IEP goals for the year.

>

> How did I get so far off target here??? Anyway, great news about the

> respirdal!!

> Hopefully you will see a continuance of this wonderful progress!!! Keep us

> informed!

>

> Sue mom to Kate 20 and Karrie 13 w/ds and mild autism

> --

>

>

> ---- CSBC <cindysue@...> wrote:

>> Happy Belated Thanksgiving everyone! I love having these extra long

>> weekends with . We both are going to hate getting back into our

>> weekday routines.

>>

>> Anyway, thought I would take a few minutes to do a update. He's

>> been off all behavioral medications for 1 1/2 years, give or take a

>> month. Slowly, he has reverted back to needing medication. We are

>> trying respirdal again. I also am having a psychiatrist treat him

>> instead of his DS doctor who is a neurologist.

>>

>> KKI did assess and gave him the ASD diagnosis. I am very

>> dissapointed that Dr. Capone at KKI didn't have him assessed when I asked

>> about all his behaviors going way back to when he was 2 years old. I

>> knew, my family knew and somewhere along the line, the professional

>> experts missed the boat. He had originally been diagnosed by a local

>> psychologist 3 years ago when we moved here. At the time, 's KKI

>> doctors disagreed. How much did miss out on therapy wise by not

>> being properly diagnosed years ago??

>>

>> At the same time, KKI was treating for his seizures. He had over

>> 100 in one year and all the neurlogist at KKI did was increase his

>> seizure meds. When I told him I found a local neurlogist to see him,

>> then he wanted to switch mediations. I knew I would not take

>> back to the neurology clinic at KKI ..the local neurologist has been most

>> helpful. He also coordinated seeing a psychiatrist- called him

>> ahead of time b/c 's needs are so complex.

>>

>> I went to see the psychiatrist first for obvious reasons. I cautioned

>> him that would give us a hard time just getting into the office

>> and would probably refuse to go back to an exam room. I was right...so

>> the psychiatrist saw in the lobby (b/c of 's behaviors, he

>> wanted him to be the last appointment of the day..so it was no big deal

>> to be seen in the lobby).

>>

>> So is back on respirdal. He told his babysitter that mommy and

>> daddy took him to the doctor for his head, he got pills and now feels

>> better?!?!?! He started on thanksgiving eve..yesterday he asked me for

>> 13 sheets of paper and a pen. He wrote his numbers 1-13 and then the

>> alphabet. He also drew pictures of various people, dogs and our house.

>> I don't know if this is the medicine or what. I'm anxious for him to go

>> back to school to see how he does there. We see the doctor again on

>> Tuesday.

>>

>>

>>

>>

>>

>>

[Guest guest]

Once a week or so she tells me to take him to the doctor. We go alot, but she

makes me feel negligent.

Now I'm gonna worry that I may have missed ASD!

 

I had an early intervention SPED teacher that was just like your nurse.  She

came in one day and was trying to tell me he had pink eye and his eye was

crusted over.  Said " what?? "   Looked at his eye wiped it off and said " that

was a little dry oatmeal I must have missed as you were coming in the door. "  

Was she embarrassed.   But every week there was a new issue.  His nose was

running and he must be sick.  W erall know how kids with DS's noses can run. 

He looked pale etc. etc. ad nauseum.  Considering he was my fifth child and my

oldest daughter was almost as old as this SPED teacher it was a little

aggravating.  I actually didn't like haviing her in my house and didn't trust

her..we thought she was a little off.  Then she tells us how she had to take

her daughter to a psychologist becase she couldn't get her to listen to her. 

We got rid of her quick.  SOme people are just on a power trip and think their

position entitles them to browbeat other people.  I would say something to the

nurse.  Maybe get a note from your doctor stating that Liam doesn NOT have to

be at the doctors every week lol!!  At least eventually he will be in another

school with another nurse.  Hopefully it will get better.  Hang in there.

 

Loree 

Re: Update

Sue,

I'm glad you shared your experience with me. It was what I needed to take a

critical look at KKI since I had trusted them so much since was

born. I wonder how many other children are misdiagnosed? When I started

the other list (behaviors but not autism with DS list), I heard from many

other parents who took their kids to KKI, had similar behaviors as ,

yet didn't have the ASD diagnosis.

The main thing I want to advocate strongly for is for parents to push for

assessments. If your child has ANY signs of autism, get an autism

specialist (not a DS specialist) to do an assessment. I use to fill out

these forms for Dr. Capone and I never saw him looking at them when I handed

them over. I'm betting he never did pay attention to them.

Anyway...here is what we saw with :

Lining things up (since age 18 months)

Hyperactivity when younger

Lack of eye contact

overstimulated in environments which leds to meltdowns (more than the stop,

drop and flop of DS)

sensory issues

apraxia and other language difficulties

Major isolation issues

Ritualistic behaviors

Lack of interest in activities (i.e. zoo, aquirium)

perseveration

preoccupation with objects (Green Eggs and Ham book, watching a particular

scene in a video over and over)

Need for sameness and routines

and looking back (for DS), not being lovable, which today i can say he

selectively is!

Good Luck with Karrie's IEP... really regressed after starting middle

school in West Virginia where they are years and years behind Virginia in

inclusion. The good teachers and administrators go to Virginia or land

to teach/work where the pay is so much better -I can't blame them. I'm

happy to hear you have support..that is so important. Keep me posted on

what happens!

Re: Update

& gt; ,

& gt;

& gt; I know what you mean about not getting the right diagnosis early...Karrie

& gt; was misdiagnosed at KKI (and we flew there from St. Louis for each

& gt; visit!!). I was told she had bipolar. She was started on meds for bipolar.

& gt; Ended up on 8 different meds, mostly to treat the side effects of the

& gt; other meds. She also ended up with 14 new medical diagnosis. Thank God I

& gt; found a doctor in St. Louis who correctly diagnosed her with ASD. She now

& gt; is med free and most of the other medical dx's have disappeared.

& gt;

& gt; Karrie now has a cyst in her brain that is growing. It has been lying

& gt; dormant since her birth and for some reason, it has just started to grow.

& gt; It presses on some cranial nerves. I'm scared silly, but have to have

& gt; faith.

& gt;

& gt; Karrie has her 4th IEP this year on Friday. I found a woman who offered to

& gt; come to the IEP with me. She used to work with an agency here that is

& gt; supported by grants from the state and federal boards of education. The

& gt; agency promotes inclusion and this woman has already told me that the

& gt; state board will take care of any " issues " that the district throws in the

& gt; way of getting Karrie out of the program she is in. Since she moved to the

& gt; middle school this year, she was placed in a life skills class. The focus

& gt; is on personal hygiene and recycling. I have made it clear that she is not

& gt; to be doing those things at school, since I am her mom and have made sure

& gt; she is independent with hygiene. As far as recycling, she is to be doing

& gt; academics. So now, she does 2 worksheets a day and then colors the rest of

& gt; the day. She has already met all of her IEP goals for the year.

& gt;

& gt; How did I get so far off target here??? Anyway, great news about the

& gt; respirdal!!

& gt; Hopefully you will see a continuance of this wonderful progress!!! Keep us

& gt; informed!

& gt;

& gt; Sue mom to Kate 20 and Karrie 13 w/ds and mild autism

& gt; --

& gt;

& gt;

& gt; ---- CSBC & lt;cindysue@... & gt; wrote:

& gt; & gt; Happy Belated Thanksgiving everyone! I love having these extra long

& gt; & gt; weekends with . We both are going to hate getting back into our

& gt; & gt; weekday routines.

& gt; & gt;

& gt; & gt; Anyway, thought I would take a few minutes to do a update. He's

& gt; & gt; been off all behavioral medications for 1 1/2 years, give or take a

& gt; & gt; month. Slowly, he has reverted back to needing medication. We are

& gt; & gt; trying respirdal again. I also am having a psychiatrist treat him

& gt; & gt; instead of his DS doctor who is a neurologist.

& gt; & gt;

& gt; & gt; KKI did assess and gave him the ASD diagnosis. I am very

& gt; & gt; dissapointed that Dr. Capone at KKI didn't have him assessed when I

asked

& gt; & gt; about all his behaviors going way back to when he was 2 years old. I

& gt; & gt; knew, my family knew and somewhere along the line, the professional

& gt; & gt; experts missed the boat. He had originally been diagnosed by a local

& gt; & gt; psychologist 3 years ago when we moved here. At the time, 's KKI

& gt; & gt; doctors disagreed. How much did miss out on therapy wise by not

& gt; & gt; being properly diagnosed years ago??

& gt; & gt;

& gt; & gt; At the same time, KKI was treating for his seizures. He had

over

& gt; & gt; 100 in one year and all the neurlogist at KKI did was increase his

& gt; & gt; seizure meds. When I told him I found a local neurlogist to see him,

& gt; & gt; then he wanted to switch mediations. I knew I would not take

& gt; & gt; back to the neurology clinic at KKI ..the local neurologist has been

most

& gt; & gt; helpful. He also coordinated seeing a psychiatrist- called him

& gt; & gt; ahead of time b/c 's needs are so complex.

& gt; & gt;

& gt; & gt; I went to see the psychiatrist first for obvious reasons. I cautioned

& gt; & gt; him that would give us a hard time just getting into the office

& gt; & gt; and would probably refuse to go back to an exam room. I was right...so

& gt; & gt; the psychiatrist saw in the lobby (b/c of 's behaviors,

he

& gt; & gt; wanted him to be the last appointment of the day..so it was no big deal

& gt; & gt; to be seen in the lobby).

& gt; & gt;

& gt; & gt; So is back on respirdal. He told his babysitter that mommy and

& gt; & gt; daddy took him to the doctor for his head, he got pills and now feels

& gt; & gt; better?!?!?! He started on thanksgiving eve..yesterday he asked me for

& gt; & gt; 13 sheets of paper and a pen. He wrote his numbers 1-13 and then the

& gt; & gt; alphabet. He also drew pictures of various people, dogs and our house.

& gt; & gt; I don't know if this is the medicine or what. I'm anxious for him to go

& gt; & gt; back to school to see how he does there. We see the doctor again on

& gt; & gt; Tuesday.

& gt; & gt;

& gt; & gt;

& gt; & gt;

& gt; & gt;

& gt; & gt;

& gt; & gt;

[Guest guest]

Kathy,

Yes, many traits are seen in both DS and ASD and with OCD. kept getting

more diagnosis (as did Karrie) which eventually was all explained with having

the ASD dx. Dr. C. did tell me the symptoms overlapped, but I really believe he

should have ruled out ASD by having seen by the autism clinic. With

, his behaviors interfer with his daily living - not his intellectual

disability as much. He is not the typical kid with DS. I'd love it if he

would go places with me, enjoy seeing things and doing fun stuff as a family.

Heck, I'd love to take to his medical appointments with no problems.

His psychiatrist believes will walk in to see him this coming week.

I'd like to see what Sharon H. will say about the school nurse issue.

Re: Update

> ,

>

> I know what you mean about not getting the right diagnosis early...Karrie

> was misdiagnosed at KKI (and we flew there from St. Louis for each

> visit!!). I was told she had bipolar. She was started on meds for bipolar.

> Ended up on 8 different meds, mostly to treat the side effects of the

> other meds. She also ended up with 14 new medical diagnosis. Thank God I

> found a doctor in St. Louis who correctly diagnosed her with ASD. She now

> is med free and most of the other medical dx's have disappeared.

>

> Karrie now has a cyst in her brain that is growing. It has been lying

> dormant since her birth and for some reason, it has just started to grow.

> It presses on some cranial nerves. I'm scared silly, but have to have

> faith.

>

> Karrie has her 4th IEP this year on Friday. I found a woman who offered to

> come to the IEP with me. She used to work with an agency here that is

> supported by grants from the state and federal boards of education. The

> agency promotes inclusion and this woman has already told me that the

> state board will take care of any " issues " that the district throws in the

> way of getting Karrie out of the program she is in. Since she moved to the

> middle school this year, she was placed in a life skills class. The focus

> is on personal hygiene and recycling. I have made it clear that she is not

> to be doing those things at school, since I am her mom and have made sure

> she is independent with hygiene. As far as recycling, she is to be doing

> academics. So now, she does 2 worksheets a day and then colors the rest of

> the day. She has already met all of her IEP goals for the year.

>

> How did I get so far off target here??? Anyway, great news about the

> respirdal!!

> Hopefully you will see a continuance of this wonderful progress!!! Keep us

> informed!

>

> Sue mom to Kate 20 and Karrie 13 w/ds and mild autism

> --

>

>

> ---- CSBC <cindysue@...> wrote:

>> Happy Belated Thanksgiving everyone! I love having these extra long

>> weekends with . We both are going to hate getting back into our

>> weekday routines.

>>

>> Anyway, thought I would take a few minutes to do a update. He's

>> been off all behavioral medications for 1 1/2 years, give or take a

>> month. Slowly, he has reverted back to needing medication. We are

>> trying respirdal again. I also am having a psychiatrist treat him

>> instead of his DS doctor who is a neurologist.

>>

>> KKI did assess and gave him the ASD diagnosis. I am very

>> dissapointed that Dr. Capone at KKI didn't have him assessed when I asked

>> about all his behaviors going way back to when he was 2 years old. I

>> knew, my family knew and somewhere along the line, the professional

>> experts missed the boat. He had originally been diagnosed by a local

>> psychologist 3 years ago when we moved here. At the time, 's KKI

>> doctors disagreed. How much did miss out on therapy wise by not

>> being properly diagnosed years ago??

>>

>> At the same time, KKI was treating for his seizures. He had over

>> 100 in one year and all the neurlogist at KKI did was increase his

>> seizure meds. When I told him I found a local neurlogist to see him,

>> then he wanted to switch mediations. I knew I would not take

>> back to the neurology clinic at KKI ..the local neurologist has been most

>> helpful. He also coordinated seeing a psychiatrist- called him

>> ahead of time b/c 's needs are so complex.

>>

>> I went to see the psychiatrist first for obvious reasons. I cautioned

>> him that would give us a hard time just getting into the office

>> and would probably refuse to go back to an exam room. I was right...so

>> the psychiatrist saw in the lobby (b/c of 's behaviors, he

>> wanted him to be the last appointment of the day..so it was no big deal

>> to be seen in the lobby).

>>

>> So is back on respirdal. He told his babysitter that mommy and

>> daddy took him to the doctor for his head, he got pills and now feels

>> better?!?!?! He started on thanksgiving eve..yesterday he asked me for

>> 13 sheets of paper and a pen. He wrote his numbers 1-13 and then the

>> alphabet. He also drew pictures of various people, dogs and our house.

>> I don't know if this is the medicine or what. I'm anxious for him to go

>> back to school to see how he does there. We see the doctor again on

>> Tuesday.

>>

>>

>>

>>

>>

>>

[Guest guest]

Ann,

I don't entirely agree with you, at least not about this past couple of week's

gain.

First off we tend to hold onto or sometimes gain simply from Stress, which you

had a good bit of in moving into the apt.

In addition, we can gain at least on the scale because of muscle use. Our

muscles DO hold water until they regulate themselves when we've suddenly started

exercising more.

Your swimming and stair climbing could have added water weight that you're not

really aware of.

Give it a week, THEN see where you are.

In the meantime, you might also think about the fact that in reality eating at a

level of 900-1000 calories a day for weeks at a time while on the truck is

probably shutting your body down to some extent, so when you come back to 'land'

and almost double your calories your body IS going to hang onto as much of it as

it can.

Just something to consider.

fireangel

>

> We moved into the apartment and it was quite an exhausting, emotional

experience. We hadn't seen our things in a whole year. This also being the

anniversary of selling our house brought me a few tears too.

>

> I now have an indoor pool entirely to myself it seems, I swam twice a day for

a week and never met anyone. We also had to get the things we had stored up at

my parents, which was a lot of carrying boxes up and down stairs.

>

> My eating was better than the last two home-times. My calorie average for the

week was 1800 (don't remember the exact amount). I thought with all the energy

expenditure with moving and swimming I would have maintained my loss down to

258, but no, the last weigh in on Tuesday showed a gain to 262. I tried not to

cry.

>

> My eating is pretty set on the truck....I average about 900 to 1000 during the

weeks out, seeming to remain comfortable at about 1000. The hometimes I bump up

with added wine, brandy and a bit fuller meals. I have a few snacks, but I do

not allow hometime to revert to binge eating or even overeating. I count every

calorie. However, since November, when I got down to 268, it seems my hometimes

cause 4-6 pound gains that take me a week or more to lose again. So I know it

is not just excess sodium.

>

> This tires me and makes me feel that I am relying too hard on the numbers

racket. I would like to go back to an intuitive style eating, but after

keeping such intensive records for 6 months... I feel almost afraid of not

knowing the numbers. Yet...what do the numbers really tell me? Eating has lost

it's joy and become scientific,

>

> Anyone eat more intuitively, or in a relaxed way and still work on getting to

a normal weight?

>

> Ann

>

[Guest guest]

Ann,I don't entirely agree with you, at least not about this past couple of week's gain.First off we tend to hold onto or sometimes gain simply from Stress, which you had a good bit of in moving into the apt.In addition, we can gain at least on the scale because of muscle use. Our muscles DO hold water until they regulate themselves when we've suddenly started exercising more.Your swimming and stair climbing could have added water weight that you're not really aware of.Give it a week, THEN see where you are.In the meantime, you might also think about the fact that in reality eating at a level of 900-1000 calories a day for weeks at a time while on the truck is probably shutting your body down to some extent, so when you come back to 'land' and almost double your calories your body IS going to hang onto as much of it as it can.Just something to consider.fireangel------------------------------Thanks for your input, fireangel. I sure do hope it is water weight, I will be weighing in tomorrow morning and can check then. There are several schools of thought about the whole calories in, calories out, whether one believes in the starvation mode or calorie cycling or zigzagging as it is recently called, there is always an explanation as to why weight loss is not happening or mysterious gains grab hold. lol. Then there is even the whole bit about low calorie intake extends life. I use to really love to do lots of research to prove pet theories, but at this point in life, I want to listen to my body instead of making calculations that just don't seem to jive with my body's intent to keep status quo. If starvation mode were true, I would have stopped losing weight altogether by now and if cycling calories were true, I would be losing after the jolt of higher calories every 5 weeks! For my 6 months of record keeping, all I can say is that if I bump my calories over 1300, I stop losing. If I bump them up over 1600 I gain weight. Another theory is that if we eat our maintenance calories, we would eventually (albeit slowly) would get to our normal weight. That's about 1300 calories for me! All I know is that in my 30 some years of dieting and binge cycles, the only way that I could consistently lose weight was by very low calories, even when I was able to exercise more. Now I have very limited activity, age and menopause on top of it, messing up the numbers even more. Sigh.Tomorrow HOPEFULLY will tell me what is going on.Ann

[Guest guest]

Michele Glad to hear you have a positive ID that is the beginning of beating any

pest. I am glad for you. Thanks for sharing.

>

> Hi Everyone,

>

> I just wanted to give an update. Last Monday evening, I found a bug sample on

my bathroom floor. I took it to the county extension office the next day to

have it an id and it turned out to be lice. My mom met me at the ER & they

confirmed head & body lice infestation. I had to do a ne treatment the

following night. I never want to go through that again. I was having terrible

problems the next day so my husband came home from work and called the nurse at

my dr office. I spoke to her in depth about what I could do with the

environment and myself to get over this without any more toxins. Her

recommendation was distilled white vinegar. I use it as a spray after my shower

or a body wash. I dilute it with water. We cleaned the house top to bottom

with it, including washing walls and ceilings. I bagged up all my clothes and

bought some cheap clothes at the dollar store for now. I even use white vinegar

in the rinse cycle in my wash. I went to the doctor two days ago and was

confirmed lice free. Oh what a relief! I am able to visit family again and

start putting the pieces back of my life. I will continue cleaning with white

vinegar for the rest of my life. I just wanted to let everyone know that there

is hope!!!

>

> Thanks,

> Michele

>

[Guest guest]

Lynn,

I just dilute it with 50% water in a spray bottle and use that to clean with a lot. The smell seems to evaporate. I also spray with my bed with it a couple of times a day and spray my sheets about an hour before I go to bed. I know so cheap and non toxic too. God was looking down on me that day I found that sample. The posts from this group have been so inspirational too.

Michele

From: Lynn <torpedolynn@...>Subject: Re: Updatebird mites Date: Thursday, May 13, 2010, 7:35 PM

Oh MisheleYou sound like it was only a bug. Oh this is wonderful news. I am glad this has worked at such a easy price. Vinagar so cheap. It really helps in my shower routine also to cut back the bugs. Thank you for reporting this. I use to use it for some cleaning but every single family member complained. I think I will copy you and start using it to clean with again fallowed by my Orange concentrate to get rid of the smell. I wonder if I could substitute that for my proxide use on the bed. That would be cheaper also. Ohh maybe mix a little vinager with the echo orange for spraying the bed. Now I will have to experiment. Good luck and happy days from here on.In Light Lynn>> Hi Everyone,> > I just wanted to give an update. Last Monday evening, I found a bug sample on my bathroom floor. I took it to the county extension office the next day to have it an id and it turned out to be lice. My mom met me at the ER & they confirmed head & body lice infestation. I had to do a ne treatment the following night. I never want to go through that again. I was having terrible problems the next day so my husband came home from work and called the nurse at my dr office. I spoke to her in depth about what I could do with the environment and myself to get over this without any more toxins. Her recommendation was distilled white vinegar. I use it as a spray after my shower or a body wash. I dilute it with water. We cleaned the house top to bottom with it, including washing walls and ceilings. I bagged up all my clothes and bought some cheap clothes at the dollar store for now. I even use white

vinegar in the rinse cycle in my wash. I went to the doctor two days ago and was confirmed lice free. Oh what a relief! I am able to visit family again and start putting the pieces back of my life. I will continue cleaning with white vinegar for the rest of my life. I just wanted to let everyone know that there is hope!!!> > Thanks,> Michele>

[Guest guest]

Dear Michele,maybe you already know this trick with lice.(sorry but clean nice people get this0 Anyway thing is get some cheap cream rinse and a nit comb and comb the heck out of your hair...This is the most under explained advice with lice....You can spend 24 hours cleaning your enviroment but if they aren't removed manually with the cream rinse,oil or something to make the lice comb slide through Your hair...they don't leave...and it's really the manual action of repeated lice combing that gets rid of the nits (eggs)...i spent so much time years ago with steam cleaning,washing etc and forgot this and this was the main step in getting rid of these monsters....Best of luck,RoseFrom: healinghope <mfrreman@...>bird mites Sent: Thu, May 13, 2010 4:18:38 PMSubject: Re: Update

Michele Glad to hear you have a positive ID that is the beginning of beating any pest. I am glad for you. Thanks for sharing.

>

> Hi Everyone,

>

> I just wanted to give an update. Last Monday evening, I found a bug sample on my bathroom floor. I took it to the county extension office the next day to have it an id and it turned out to be lice. My mom met me at the ER & they confirmed head & body lice infestation. I had to do a ne treatment the following night. I never want to go through that again. I was having terrible problems the next day so my husband came home from work and called the nurse at my dr office. I spoke to her in depth about what I could do with the environment and myself to get over this without any more toxins. Her recommendation was distilled white vinegar. I use it as a spray after my shower or a body wash. I dilute it with water. We cleaned the house top to bottom with it, including washing walls and ceilings. I bagged up all my clothes and bought some cheap clothes at the dollar store for now. I even use white vinegar in the rinse cycle in my

wash. I went to the doctor two days ago and was confirmed lice free. Oh what a relief! I am able to visit family again and start putting the pieces back of my life. I will continue cleaning with white vinegar for the rest of my life. I just wanted to let everyone know that there is hope!!!

>

> Thanks,

> Michele

>

[Guest guest]

Hi Rose,

I no longer have any lice in my hair or on my body. I am going to continue to clean my environment to avoid reinfestation.

Thanks,

Michele

From: rose <auberginedream777@...>Subject: Re: Re: Updatebird mites Date: Thursday, May 13, 2010, 9:54 PM

Dear Michele,maybe you already know this trick with lice.(sorry but clean nice people get this0 Anyway thing is get some cheap cream rinse and a nit comb and comb the heck out of your hair...This is the most under explained advice with lice....You can spend 24 hours cleaning your enviroment but if they aren't removed manually with the cream rinse,oil or something to make the lice comb slide through Your hair...they don't leave...and it's really the manual action of repeated lice combing that gets rid of the nits (eggs)...i spent so much time years ago with steam cleaning,washing etc and forgot this and this was the main step in getting rid of these monsters.... Best of luck,Rose

From: healinghope <mfrreman (DOT) com>bird mitesSent: Thu, May 13, 2010 4:18:38 PMSubject: Re: Update

Michele Glad to hear you have a positive ID that is the beginning of beating any pest. I am glad for you. Thanks for sharing.>> Hi Everyone,> > I just wanted to give an update. Last Monday evening, I found a bug sample on my bathroom floor. I took it to the county extension office the next day to have it an id and it turned out to be lice. My mom met me at the ER & they confirmed head & body lice infestation. I had to do a ne treatment the following night. I never want to go through that again. I was having terrible problems the next day so my husband came home from work and called the nurse at my dr office. I spoke to her in depth about what I could do with

the environment and myself to get over this without any more toxins. Her recommendation was distilled white vinegar. I use it as a spray after my shower or a body wash. I dilute it with water. We cleaned the house top to bottom with it, including washing walls and ceilings. I bagged up all my clothes and bought some cheap clothes at the dollar store for now. I even use white vinegar in the rinse cycle in my wash. I went to the doctor two days ago and was confirmed lice free. Oh what a relief! I am able to visit family again and start putting the pieces back of my life. I will continue cleaning with white vinegar for the rest of my life. I just wanted to let everyone know that there is hope!!!> > Thanks,> Michele>

[Guest guest]

I am very happy to hear your results and wish you continued success!!

From: Michele Sheeran <mishele_s@...>bird mites Sent: Fri, May 14, 2010 8:23:45 AMSubject: Re: Re: Update

Hi Rose,

I no longer have any lice in my hair or on my body. I am going to continue to clean my environment to avoid reinfestation.

Thanks,

Michele

From: rose <auberginedream777>Subject: Re: Re: Updatebird mitesDate: Thursday, May 13, 2010, 9:54 PM

Dear Michele,maybe you already know this trick with lice.(sorry but clean nice people get this0 Anyway thing is get some cheap cream rinse and a nit comb and comb the heck out of your hair...This is the most under explained advice with lice....You can spend 24 hours cleaning your enviroment but if they aren't removed manually with the cream rinse,oil or something to make the lice comb slide through Your hair...they don't leave...and it's really the manual action of repeated lice combing that gets rid of the nits (eggs)...i spent so much time years ago with steam cleaning,washing etc and forgot this and this was the main step in getting rid of these monsters.... Best of luck,Rose

From: healinghope <mfrreman (DOT) com>bird mitesSent: Thu, May 13, 2010 4:18:38 PMSubject: Re: Update

Michele Glad to hear you have a positive ID that is the beginning of beating any pest. I am glad for you. Thanks for sharing.>> Hi Everyone,> > I just wanted to give an update. Last Monday evening, I found a bug sample on my bathroom floor. I took it to the county extension office the next day to have it an id and it turned out to be lice. My mom met me at the ER & they confirmed head & body lice infestation. I had to do a ne treatment the following night. I never want to go through that again. I was having terrible problems the next day so my husband came home from work and called the nurse at my dr office. I spoke to her in depth about what I could do with the environment and myself to get over this

without any more toxins. Her recommendation was distilled white vinegar. I use it as a spray after my shower or a body wash. I dilute it with water. We cleaned the house top to bottom with it, including washing walls and ceilings. I bagged up all my clothes and bought some cheap clothes at the dollar store for now. I even use white vinegar in the rinse cycle in my wash. I went to the doctor two days ago and was confirmed lice free. Oh what a relief! I am able to visit family again and start putting the pieces back of my life. I will continue cleaning with white vinegar for the rest of my life. I just wanted to let everyone know that there is hope!!!> > Thanks,> Michele>

[Guest guest]

Thanks Frito! Reading some of your posts, inspired me to really find a sample. I will keep working at it and hope you find success soon too!

From: rose <auberginedream777>Subject: Re: Re: Updatebird mitesDate: Thursday, May 13, 2010, 9:54 PM

Dear Michele,maybe you already know this trick with lice.(sorry but clean nice people get this0 Anyway thing is get some cheap cream rinse and a nit comb and comb the heck out of your hair...This is the most under explained advice with lice....You can spend 24 hours cleaning your enviroment but if they aren't removed manually with the cream rinse,oil or something to make the lice comb slide through Your hair...they don't leave...and it's really the manual action of repeated lice combing that gets rid of the nits (eggs)...i spent so much time years ago with steam cleaning,washing etc and forgot this and this was the main step in getting rid of these monsters.... Best of luck,Rose

From: healinghope <mfrreman (DOT) com>bird mitesSent: Thu, May 13, 2010 4:18:38 PMSubject: Re: Update

Michele Glad to hear you have a positive ID that is the beginning of beating any pest. I am glad for you. Thanks for sharing.>> Hi Everyone,> > I just wanted to give an update. Last Monday evening, I found a bug sample on my bathroom floor. I took it to the county extension office the next day to have it an id and it turned out to be lice. My mom met me at the ER & they confirmed head & body lice infestation. I had to do a ne treatment the following night. I never want to go through that again. I was having terrible problems the next day so my husband came home from work and called the nurse at my dr office. I spoke to her in depth about what I could do with the environment and myself to get over this

without any more toxins. Her recommendation was distilled white vinegar. I use it as a spray after my shower or a body wash. I dilute it with water. We cleaned the house top to bottom with it, including washing walls and ceilings. I bagged up all my clothes and bought some cheap clothes at the dollar store for now. I even use white vinegar in the rinse cycle in my wash. I went to the doctor two days ago and was confirmed lice free. Oh what a relief! I am able to visit family again and start putting the pieces back of my life. I will continue cleaning with white vinegar for the rest of my life. I just wanted to let everyone know that there is hope!!!> > Thanks,> Michele>

[Guest guest]

TestingFrom: Lynn <torpedolynn@...>bird mites Sent: Sat, July 24, 2010 4:23:26 AMSubject: Update

Hi all

Almost a full moon. I did extra heavy spraying just in case the cha cha goes playing on. Today I have a new and different feeling. I remember a short time ago Mr. Common Sense saying he feels like he could poor Morgellons into his body and cure it. I am starting to get that feeling. I just do not trust it to stay or last yet. There are less bugs yet again. This morning shower I got away with just my vinager spray and than soaping up with my sulfar soap and leaving it on. No soaping down and waiting and rinse cycle on the body. But this evening I did do the whole routine just to protect myself from what would be the bigger hatch cycle because of the near full moon.

I ran out of Physician strenth Organacylin. I am taking the Olive leaf caps three times a day. A friend who is ill with lung issues came to me for a cure and he went in halvies on a large bottle of the Oraganacillin. Will do one more session of that beofre the next thing. I think once I get to a bug free stage I will do the 3 points plan all over again and than start on the radiation detox and healing damaged nerves. Also want to look into the iodine and see about maybe adding more to that.

Oh also finally finished my secound bottle of mold and fungas detox. Did that for about 4 months. Nervous about some of the finished things. Hope I do not revert back. Been getting some bad stomach aches off and on this week. Almost like a nervous stomach. Could be diet combined with the stresses of home life and trying to get my toys ready for veiwing by the toy co. Now that things are starting to happen I feel the pressure of trying to figure out just how to meet their requirements. And thats just so they can see more of the idea.

In Light Lynn

[Guest guest]

Hi Sally the bug was in my ear badly several times . I went to a quick clinic (

43.00 ) & told them I had an ear nfection , the prescribed anti biotic drops (

32.00) , I u-ed them for the duration of 10 days & it wiped out the infestaion

& my ear was fine , it took 4 days to stop the pain . I have done it 3 times in

5 years, each time the pain was unbearable , baths were always the cause , I put

vaseline in my ears for a long time to keep them out of the ears in the tub ,

if I feele the bug early I use the peroxide borax & water mix & it will stop it

, but is it is deep seated it took the antibiotic drops

1 cup Epsom & 1 cup boraxs & 1 gallon of water & 5-6 tbls cococnut oil stops

the disease this bird mite brings. The organizim gets locked into the glaze & is

destroyed, wet vacing up the mess helps a lot. I bealch my wet vac with 30

percent bleach & water outside & let it run & suck up 1 cup borax powder to

sterilize the wet van I dump at the sewer in the street. .

pslease let me know anyhing the kills thei bug & after parasote / fungus /

mold

Thsnks , Biill

On Sat Jul 24th, 2010 3:22 PM EDT Sally Betterton wrote:

>Testing

>

>

>

>________________________________

>From: Lynn <torpedolynn@...>

>bird mites

>Sent: Sat, July 24, 2010 4:23:26 AM

>Subject: Update

>

>

>Hi all

>

>Almost a full moon. I did extra heavy spraying just in case the cha cha goes

>playing on. Today I have a new and different feeling. I remember a short time

>ago Mr. Common Sense saying he feels like he could poor Morgellons into his

body

>and cure it. I am starting to get that feeling. I just do not trust it to stay

>or last yet. There are less bugs yet again. This morning shower I got away with

>just my vinager spray and than soaping up with my sulfar soap and leaving it

on.

>No soaping down and waiting and rinse cycle on the body. But this evening I did

>do the whole routine just to protect myself from what would be the bigger hatch

>cycle because of the near full moon.

>

>

>I ran out of Physician strenth Organacylin. I am taking the Olive leaf caps

>three times a day. A friend who is ill with lung issues came to me for a cure

>and he went in halvies on a large bottle of the Oraganacillin. Will do one more

>session of that beofre the next thing. I think once I get to a bug free stage I

>will do the 3 points plan all over again and than start on the radiation detox

>and healing damaged nerves. Also want to look into the iodine and see about

>maybe adding more to that.

>

>

>Oh also finally finished my secound bottle of mold and fungas detox. Did that

>for about 4 months. Nervous about some of the finished things. Hope I do not

>revert back. Been getting some bad stomach aches off and on this week. Almost

>like a nervous stomach. Could be diet combined with the stresses of home life

>and trying to get my toys ready for veiwing by the toy co. Now that things are

>starting to happen I feel the pressure of trying to figure out just how to meet

>their requirements. And thats just so they can see more of the idea.

>

>In Light Lynn

>

>

>

>

>

>

[Guest guest]

Whew, what a challenging and hectic month for you ! And a 10 pound loss to boot!

BRAVO!!!!!

   elisaannh

-- update

As July comes to an end. I can say I am glad it is almost over. Started the month out with DD birthday cookout with his family. YUGH. My Dad with a roaring infection in his foot. He gets daily treatments from a visiting nurse. Bless those nurses. surgery. Everything went well. Had to give up family outing with my family do to it was at a state park and she couldn't swim. AND I was worried about infection. Last weekend was a big race in Oxford ME. Biggest in the northeast. Had to get up at 3am to get there. BUT great weather and shitty racing. LOL BUT we made it threw. So hubby took a few days off. Tues we went to the Mt Washington boat ride around Lake Winepassocki (sp). So I thought I could breathe a bit. Then came Sat. He had to work. We had a race in MAINE. He was ticked when he got home. Didn't push. Long ride to Maine. Traffic was awful so we took back way. The car he works on qualified and crashed out in the race. Not his fault. Another wanna be race car driver. LOL So on the way home he informs me the trucks transmission is gone. He lost 3 and 4th gear on the way home. Couldn't come at a worse time. So now he had to figure out getting a new one, changing it out, and how to pay. Being a mechanic you would figure no biggy. BUT he doesn't have location to change it out. So he is trying to figure out a way to do it himself in his tiny garage with no major tools to help. My opinion is to save his sanity. BIT THE BULLET and have someone else do it.

So now you see why I want July over. LOL So going to the gym daily will be hard but will strive to make it there as much as possible. Scale front. Been going to the gym 7 weeks. Only lost 10 lbs. BUT I am enjoying it at times. Have to work on food.

So have a good thought for me that he figures out the truck sooner than later.

N.H.

[Guest guest]

Alright ,way to go, and had to deal with all that stress to boot!! You da woman!woohoo!!!! :)Daisy

[Guest guest]

,

I don't know what to say, you have a lot of issues going on with , but

wanted to tell you that I will keep him and you in my prayers.  I hope you get

an answer very soon!

Please keep us updated.

Bonnie

--- El jue 5-ago-10, Dusterhoft <melanie.dusterhoft@...>

escribió:

De: Dusterhoft <melanie.dusterhoft@...>

Asunto: update

A:

Fecha: jueves, 5 de agosto de 2010, 0:51

 

Okay it's been a while. is having major issues and with 1. what I

know

and 2. what I can find on the internet I'm starting to get really worried

about the little guy. In the past month we have had the following

problems: 1. The surgery that we did 3 times last year the Mitrofanoff

(where the urologist creates an opening through 's belly button so I can

empty his bladder that way, because was starting to get damage on his

kidneys) scarred over and the only way to open it up is to do the surgery

yet again, I trust the urologist I just don't trust the procedure anymore,

so his suggestion is to put a suprapubic catheter below his pull up line

good thing is he would be under for about 5 minutes the opening won't close

up because there is a little door/valve that is sitting flush with the skin

and you do catheters through there, 2. We followed up with the

rheumatologist (and yes I made an appointment with mine, I have the markers

for Lupus, I had the signature rash and I twisted my ankle 6 weeks ago and

the joint still hurts), anyways his tests for lupus and rheumatoid arthritis

(because he has joint pain as well) were negative, BUT when she was doing

her exam on him she heard a murmur so off to the cardiologist we go also his

cholesterol is still elevated especially his bad cholesterol (and no I don't

let him eat fatty foods either, its because of some of the medications he is

on for his behavior and genetics on my side of the family), 3. We get to go

to the University of Minnesota tomorrow to talk with one of the urologists

there to find out what we can do, a second opinion, I also have an

appointment set up for the beginning of September for the Mayo clinic (yes I

am going to drive 2 hours to go and see a specialist). Past 4 days he has

eaten maybe a total of one meal, not as many wet pull ups, he is starting to

swell up, I'm starting to get really worried here (looking online it could

be kidney failure, I did all the surgeries to avoid that). Like I said to

somebody tonight I think I am going to have a pity party tonight, the whole

why me? why ? why does he have so many different problems? why can't

he be higher functioning? (we have done an MRI of his brain and spinal cord

and his brain stem is smaller than what it should be and so is his brain oh

and he has a lipoma along L3-L7). I can't seem to find somebody else out

there with the same problems that has, I go to the urology groups and

most of them consist of females that are mentally functioning at a normal

level, their disability is paralysis.

Oh yeah I also forgot I got my van back last week on Tuesday, and totaled it

on Wednesday..........brakes wouldn't work on the van insurance company

totaled it out but we are doing a buy back and between my hubby and my

friend's hubby they will get it fixed for less than the check they are

sending me, only reason why we are doing the buy back is because we have

less than 100 miles on the brand spanking new transmission. ARGH I hate

vehicles!!

[Guest guest]

I finally found a pediatric specialist that loves to work with complex kids!! I

texted s primary to call her up and see when I can get in with her. I was

about to get information about Boston's childrens hospital according to some

websites they are ranked up with working with complex kids. So s primary

asked me what was so special about this doctor and I was like in her profile she

loves highly complex kids he goes that is for you (including the newly

found heart murmur we have 20 different medical diagnoses). Makes life

interesting.

Sent from my Verizon Wireless BlackBerry

Re: update

,

I don't know what to say, you have a lot of issues going on with , but

wanted to tell you that I will keep him and you in my prayers.  I hope you get

an answer very soon!

Please keep us updated.

Bonnie

--- El jue 5-ago-10, Dusterhoft <melanie.dusterhoft@...>

escribió:

De: Dusterhoft <melanie.dusterhoft@...>

Asunto: update

A:

Fecha: jueves, 5 de agosto de 2010, 0:51

 

Okay it's been a while. is having major issues and with 1. what I

know

and 2. what I can find on the internet I'm starting to get really worried

about the little guy. In the past month we have had the following

problems: 1. The surgery that we did 3 times last year the Mitrofanoff

(where the urologist creates an opening through 's belly button so I can

empty his bladder that way, because was starting to get damage on his

kidneys) scarred over and the only way to open it up is to do the surgery

yet again, I trust the urologist I just don't trust the procedure anymore,

so his suggestion is to put a suprapubic catheter below his pull up line

good thing is he would be under for about 5 minutes the opening won't close

up because there is a little door/valve that is sitting flush with the skin

and you do catheters through there, 2. We followed up with the

rheumatologist (and yes I made an appointment with mine, I have the markers

for Lupus, I had the signature rash and I twisted my ankle 6 weeks ago and

the joint still hurts), anyways his tests for lupus and rheumatoid arthritis

(because he has joint pain as well) were negative, BUT when she was doing

her exam on him she heard a murmur so off to the cardiologist we go also his

cholesterol is still elevated especially his bad cholesterol (and no I don't

let him eat fatty foods either, its because of some of the medications he is

on for his behavior and genetics on my side of the family), 3. We get to go

to the University of Minnesota tomorrow to talk with one of the urologists

there to find out what we can do, a second opinion, I also have an

appointment set up for the beginning of September for the Mayo clinic (yes I

am going to drive 2 hours to go and see a specialist). Past 4 days he has

eaten maybe a total of one meal, not as many wet pull ups, he is starting to

swell up, I'm starting to get really worried here (looking online it could

be kidney failure, I did all the surgeries to avoid that). Like I said to

somebody tonight I think I am going to have a pity party tonight, the whole

why me? why ? why does he have so many different problems? why can't

he be higher functioning? (we have done an MRI of his brain and spinal cord

and his brain stem is smaller than what it should be and so is his brain oh

and he has a lipoma along L3-L7). I can't seem to find somebody else out

there with the same problems that has, I go to the urology groups and

most of them consist of females that are mentally functioning at a normal

level, their disability is paralysis.

Oh yeah I also forgot I got my van back last week on Tuesday, and totaled it

on Wednesday..........brakes wouldn't work on the van insurance company

totaled it out but we are doing a buy back and between my hubby and my

friend's hubby they will get it fixed for less than the check they are

sending me, only reason why we are doing the buy back is because we have

less than 100 miles on the brand spanking new transmission. ARGH I hate

vehicles!!

[Guest guest]

Damn it damn it damn it. I could have used other words. Her suggestion is a

longer surgery a longer hospital stay because it involves the bowels. I guess I

will be making that trip down to Rochester after all. Maybe I'll call them up

and see their DS specialists as well.

P.S. Yes there is going to be another pity party tonight. I just had one in the

office.

Sent from my Verizon Wireless BlackBerry

Re: update

,

I don't know what to say, you have a lot of issues going on with , but

wanted to tell you that I will keep him and you in my prayers.  I hope you get

an answer very soon!

Please keep us updated.

Bonnie

--- El jue 5-ago-10, Dusterhoft <melanie.dusterhoft@...>

escribió:

De: Dusterhoft <melanie.dusterhoft@...>

Asunto: update

A:

Fecha: jueves, 5 de agosto de 2010, 0:51

 

Okay it's been a while. is having major issues and with 1. what I

know

and 2. what I can find on the internet I'm starting to get really worried

about the little guy. In the past month we have had the following

problems: 1. The surgery that we did 3 times last year the Mitrofanoff

(where the urologist creates an opening through 's belly button so I can

empty his bladder that way, because was starting to get damage on his

kidneys) scarred over and the only way to open it up is to do the surgery

yet again, I trust the urologist I just don't trust the procedure anymore,

so his suggestion is to put a suprapubic catheter below his pull up line

good thing is he would be under for about 5 minutes the opening won't close

up because there is a little door/valve that is sitting flush with the skin

and you do catheters through there, 2. We followed up with the

rheumatologist (and yes I made an appointment with mine, I have the markers

for Lupus, I had the signature rash and I twisted my ankle 6 weeks ago and

the joint still hurts), anyways his tests for lupus and rheumatoid arthritis

(because he has joint pain as well) were negative, BUT when she was doing

her exam on him she heard a murmur so off to the cardiologist we go also his

cholesterol is still elevated especially his bad cholesterol (and no I don't

let him eat fatty foods either, its because of some of the medications he is

on for his behavior and genetics on my side of the family), 3. We get to go

to the University of Minnesota tomorrow to talk with one of the urologists

there to find out what we can do, a second opinion, I also have an

appointment set up for the beginning of September for the Mayo clinic (yes I

am going to drive 2 hours to go and see a specialist). Past 4 days he has

eaten maybe a total of one meal, not as many wet pull ups, he is starting to

swell up, I'm starting to get really worried here (looking online it could

be kidney failure, I did all the surgeries to avoid that). Like I said to

somebody tonight I think I am going to have a pity party tonight, the whole

why me? why ? why does he have so many different problems? why can't

he be higher functioning? (we have done an MRI of his brain and spinal cord

and his brain stem is smaller than what it should be and so is his brain oh

and he has a lipoma along L3-L7). I can't seem to find somebody else out

there with the same problems that has, I go to the urology groups and

most of them consist of females that are mentally functioning at a normal

level, their disability is paralysis.

Oh yeah I also forgot I got my van back last week on Tuesday, and totaled it

on Wednesday..........brakes wouldn't work on the van insurance company

totaled it out but we are doing a buy back and between my hubby and my

friend's hubby they will get it fixed for less than the check they are

sending me, only reason why we are doing the buy back is because we have

less than 100 miles on the brand spanking new transmission. ARGH I hate

vehicles!!

[Guest guest]

You are on my mind (and ) and in my prayers. I am so sorry that things

have to be so difficult and unknown. Kiersten

>

>From: " melanie.dusterhoft@... " <melanie.dusterhoft@...>

>B. <bonniand@...>;

>Sent: Thu, August 5, 2010 3:44:09 PM

>Subject: Re: update

>

>

>Damn it damn it damn it. I could have used other words. Her suggestion is a

>longer surgery a longer hospital stay because it involves the bowels. I guess I

>will be making that trip down to Rochester after all. Maybe I'll call them up

>and see their DS specialists as well.

>

>

>

>P.S. Yes there is going to be another pity party tonight. I just had one in the

>office.

>

>Sent from my Verizon Wireless BlackBerry

>

> Re: update

>

>,

>

>I don't know what to say, you have a lot of issues going on with , but

>wanted to tell you that I will keep him and you in my prayers. I hope you get

>an answer very soon!

>

>

>Please keep us updated.

>

>Bonnie

>

>--- El jue 5-ago-10, Dusterhoft <melanie.dusterhoft@...>

escribió:

>

>

>De: Dusterhoft <melanie.dusterhoft@...>

>Asunto: update

>A:

>Fecha: jueves, 5 de agosto de 2010, 0:51

>

>

>

>

>Okay it's been a while. is having major issues and with 1. what I know

>

>and 2. what I can find on the internet I'm starting to get really worried

>

>about the little guy. In the past month we have had the following

>

>problems: 1. The surgery that we did 3 times last year the Mitrofanoff

>

>(where the urologist creates an opening through 's belly button so I can

>

>empty his bladder that way, because was starting to get damage on his

>

>kidneys) scarred over and the only way to open it up is to do the surgery

>

>yet again, I trust the urologist I just don't trust the procedure anymore,

>

>so his suggestion is to put a suprapubic catheter below his pull up line

>

>good thing is he would be under for about 5 minutes the opening won't close

>

>up because there is a little door/valve that is sitting flush with the skin

>

>and you do catheters through there, 2. We followed up with the

>

>rheumatologist (and yes I made an appointment with mine, I have the markers

>

>for Lupus, I had the signature rash and I twisted my ankle 6 weeks ago and

>

>the joint still hurts), anyways his tests for lupus and rheumatoid arthritis

>

>(because he has joint pain as well) were negative, BUT when she was doing

>

>her exam on him she heard a murmur so off to the cardiologist we go also his

>

>cholesterol is still elevated especially his bad cholesterol (and no I don't

>

>let him eat fatty foods either, its because of some of the medications he is

>

>on for his behavior and genetics on my side of the family), 3. We get to go

>

>to the University of Minnesota tomorrow to talk with one of the urologists

>

>there to find out what we can do, a second opinion, I also have an

>

>appointment set up for the beginning of September for the Mayo clinic (yes I

>

>am going to drive 2 hours to go and see a specialist). Past 4 days he has

>

>eaten maybe a total of one meal, not as many wet pull ups, he is starting to

>

>swell up, I'm starting to get really worried here (looking online it could

>

>be kidney failure, I did all the surgeries to avoid that). Like I said to

>

>somebody tonight I think I am going to have a pity party tonight, the whole

>

>why me? why ? why does he have so many different problems? why can't

>

>he be higher functioning? (we have done an MRI of his brain and spinal cord

>

>and his brain stem is smaller than what it should be and so is his brain oh

>

>and he has a lipoma along L3-L7). I can't seem to find somebody else out

>

>there with the same problems that has, I go to the urology groups and

>

>most of them consist of females that are mentally functioning at a normal

>

>level, their disability is paralysis.

>

>

>

>

>

>Oh yeah I also forgot I got my van back last week on Tuesday, and totaled it

>

>on Wednesday..........brakes wouldn't work on the van insurance company

>

>totaled it out but we are doing a buy back and between my hubby and my

>

>friend's hubby they will get it fixed for less than the check they are

>

>sending me, only reason why we are doing the buy back is because we have

>

>less than 100 miles on the brand spanking new transmission. ARGH I hate

>

>vehicles!!

>

>

>

>