update

[Guest guest]

Well, that won't be too bad a thing. My grandma had her thyroid removed when

she was 19. She was able to have 7 children and lived to the ripe old age of

87. Our 2nd dd will have her thyroid killed in a few years if it doesn't burn

itself out by then. That's so we can use thyroid meds instead of the meds she's

on now for her Graves' disease. You really can do pretty well with thyroid

replacement therapy.

So, at least you can feel assured that her hormonal levels can be adjusted to

keep her metabolism on track. I'm just so sorry that you have the added concern

of cancer. But it sounds like you're in very good hands.

Re: Update

Thank you for your concern. They are planning on removing her whole thyroid.

With her genetic disorder and the thyroid being a " hot spot " for cancer, and her

having a nodule already it is much less risky for her to not have a thyroid at

all. I will keep you posted.

[Guest guest]

Our thoughts and prayers are with you and .

-Dana

Priscillas mom

>

> I feel like you all have been in on all of this stuff with my DD

and her genetic disorder she was diagnosed with this summer. I

just wanted to let you all know that they found a nodule in her

thyroid on Friday and because of the increased flow to the area they

feel there may be a malignancy. I am trying so hard to hold it

together. I was doing better yesterday and today I am all tears which

I am trying to choke down so the kids don't see. I know we all deal

with a lot all of the time and we always end up finding the strength

to do what we need to do. I just want you all to know that even

though I don't post a lot I read everything every day and I gain

knowledge and strength. Thanks,

>

>

[Guest guest]

You are in my prayers...

priscillasmum04 wrote: Our thoughts and

prayers are with you and .

-Dana

Priscillas mom

>

> I feel like you all have been in on all of this stuff with my DD

and her genetic disorder she was diagnosed with this summer. I

just wanted to let you all know that they found a nodule in her

thyroid on Friday and because of the increased flow to the area they

feel there may be a malignancy. I am trying so hard to hold it

together. I was doing better yesterday and today I am all tears which

I am trying to choke down so the kids don't see. I know we all deal

with a lot all of the time and we always end up finding the strength

to do what we need to do. I just want you all to know that even

though I don't post a lot I read everything every day and I gain

knowledge and strength. Thanks,

>

>

[Guest guest]

Hi ,

If it is cancer & you live in AZ, I know a mom whose son had a fast growing

cancer & survived, who you might want to connect with for support of having

to deal with cancer & autism. Big hugs to you both.

Marie A.

>

> I feel like you all have been in on all of this stuff with my DD and

> her genetic disorder she was diagnosed with this summer. I just wanted to

> let you all know that they found a nodule in her thyroid on Friday and

> because of the increased flow to the area they feel there may be a

> malignancy. I am trying so hard to hold it together. I was doing better

> yesterday and today I am all tears which I am trying to choke down so the

> kids don't see. I know we all deal with a lot all of the time and we always

> end up finding the strength to do what we need to do. I just want you all to

> know that even though I don't post a lot I read everything every day and I

> gain knowledge and strength. Thanks,

>

>

[Guest guest]

Thanks Bea,

is 9 by the way. Thank you for sharing your story. It is great to hear

from people who have been through it and are surviving. The genetic disorder she

has is complicating things but we are learning a lot about it. Our geneticist is

actually doing a paper on our daughter that she will present at a big genetics

conference in the Spring. Thanks again for the information.

Re: Update

Dear :

Sorry to read about your . I want to tell you that you are very

lucky. I have no idea how old your is, but if she has thyroid

cancer, it has been found pretty early in her life.

I have a lot of personal experience with thyroid cancer. I have

survived it. Back in 1982, I found some lumps in my throat. I went

away on a vacation and came back several months later and the lumps

were still there. I was assured by the Dr. that they don't panic

anymore when they find lumps in one's throat. I was scheduled for a

biopsy. The lump was thyroid cancer and two days later a surgeon

removed my thyroid.

After the first surgery, my husband was told, " I have good news and

bad news for you. The bad news is that your wife has cancer. The

good news is that it is the best form of cancer you can have. "

I have taken Synthroid almost every day since my thyroid was

removed. The only times I have been off of it, is when the Dr.

needed to screen me for thyroid cancer cells. That has happened

three times. Each time was difficult since it required that I go off

of Synthroid, get it out of my system and three to four weeks later

swallow some radioactive Iodine. I have had three radioactive

treatments to kill thyroid cancer cells that were in my system. I'm

still here and I think my endocrinologist would say that I am cured.

If you are ever told that your needs to undergo a radioactive

Iodine body scan, try to do it during the summer. It is quite

debilitating and takes 6 to 8 weeks out of ones life from beginning

to end.

I wish you and your daughter good luck.

Regards,

Bea

>

> I feel like you all have been in on all of this stuff with my DD

and her genetic disorder she was diagnosed with this summer. I

just wanted to let you all know that they found a nodule in her

thyroid on Friday and because of the increased flow to the area they

feel there may be a malignancy. I am trying so hard to hold it

together. I was doing better yesterday and today I am all tears which

I am trying to choke down so the kids don't see. I know we all deal

with a lot all of the time and we always end up finding the strength

to do what we need to do. I just want you all to know that even

though I don't post a lot I read everything every day and I gain

knowledge and strength. Thanks,

>

>

[Guest guest]

Great news about the tumor! You must be so relieved!

Amnesty

>

> Hi Everyone,

> I have been super busy but have been keeping up as much as possible

with the posts. First of all as a refresher I am 's Mom and she

is the one that has the p10 mutation and autism etc. She had her

thyroid removed a few weeks ago and thank god doesn't have cancer!

YEAH!!!! She did really well with the surgery and actually loved

" resting " in the hospital for a few days. Hey no brothers and movies

on demand can't be bad right? I loved the post from , it was just

beautiful.

> I think with all of these different opinions out there we just have

to realize there is a happy medium. Hearing from Sondra about her 4

kids on the spectrum and herself and Amy and all of us in between I

think the one thing we have in common is that we love our children and

want what is best for them and everyone has to do it in their own way.

I feel guilty a lot that maybe I am not doing all I could be for my

daughter and her 4 brothers (one with autism one with tourettes). I

realized a lot after reading all of these different posts and

especially from the ones of you with older girls. Yes we want our

daughters to be free of pain as much as we can help it and help them

in whatever ways we can but loving them for who they are is probably

the best way to have a meaningful relationship with them. I am

rambling and maybe not making any sense and mainly I wanted to let

everyone know that 's tumor was benign. Thanks!

>

>

[Guest guest]

Bonnie, I'm so glad he's feeling better, doing better. That was nice about the

cards, sure that really cheered him! Always good when they want to return to

school!

CST - Child Study Team?

>

> Fortunately, is doing a little bit better over the past couple of

days. We have been doing some exposure work (going places and staying there for

increasing amounts of time. The guidance counselor from his school came by

yesterday and brought him some cards from friends. He was so happy - haven't

seen him smile like that in weeks. He is having his friend over later today for

a little while and is very excited. He has been talking about going back to

school.

>

> I have sent a letter requesting a CST meeting to discuss placement. Between

that and the second psychiatric opinion, we are moving forward and that is

always a good thing.

>

> Bonnie

>

[Guest guest]

Yes...CST = Child STudy Team.

Thanks,

Bonnie

> >

> > Fortunately, is doing a little bit better over the past couple of

days. We have been doing some exposure work (going places and staying there for

increasing amounts of time. The guidance counselor from his school came by

yesterday and brought him some cards from friends. He was so happy - haven't

seen him smile like that in weeks. He is having his friend over later today for

a little while and is very excited. He has been talking about going back to

school.

> >

> > I have sent a letter requesting a CST meeting to discuss placement. Between

that and the second psychiatric opinion, we are moving forward and that is

always a good thing.

> >

> > Bonnie

> >

>

[Guest guest]

Saw Dr. Hollander in NY yesterday. He wants to rule out PANDAS, thinks Matt

should be in a therapeutic school, feels he should do some exposure therapy,

ordered some drug levels. Basically sounds like my immediate plan is on target

and I'll have to wait and see what testing/meds and a new school environment

will bring. In the short run, I am amazed that Matt was able to go into the

city (has been agoraphobic). He has good days and bad and has been helping me

cook and clean for turkey day.

Hope you all have a good holiday. We have a lot to be thankful for even though

somedays it's hard to remember that.

Bonnie

[Guest guest]

Bonnie, it sounds like things are on the right track. Did the pdoc say her

opinion on bipolar or not? I remember you mentioning getting a second opinion

about that. I hope things continue to improve and that he has more good days

than bad! Stormy

________________________________

To:

Sent: Wed, November 24, 2010 12:30:24 PM

Subject: update

Saw Dr. Hollander in NY yesterday. He wants to rule out PANDAS, thinks Matt

should be in a therapeutic school, feels he should do some exposure therapy,

ordered some drug levels. Basically sounds like my immediate plan is on target

and I'll have to wait and see what testing/meds and a new school environment

will bring. In the short run, I am amazed that Matt was able to go into the

city (has been agoraphobic). He has good days and bad and has been helping me

cook and clean for turkey day.

Hope you all have a good holiday. We have a lot to be thankful for even though

somedays it's hard to remember that.

Bonnie

[Guest guest]

Yes, I think everyone is in agreement that there is a mood disorder. The

question is whether his anxiety is truly a manifestation of the bipolar illness

or if it is a co-morbid condition.

I found a fascinating article on a fear of harm phenotype of childhood bipolar

disorder and it seems to fit , though I still believe that there is more

to it as 's worries and fears are quite obsessive in nature. Many OCD

sufferers have that fear of harm obsession. My husband and my mom have a panic

disorder and my husband swears my father-in-law has some OCD.

We are still doing OK - no raging. Still have anxiety and some panic, but we're

doind exposures and stayed in a store for a half hour yesterday! He hasn't

shown any rage or tantrums, but I have now and then seen a little irritability

and low frustration tolerance. Hoping that it doesn't change for the worse.

Thanks and I hope you are well too. Happy Thanksgving

>

> Bonnie, it sounds like things are on the right track. Did the pdoc say her

> opinion on bipolar or not? I remember you mentioning getting a second opinion

> about that. I hope things continue to improve and that he has more good days

> than bad! Stormy

>

>

>

>

>

> ________________________________

>

> To:

> Sent: Wed, November 24, 2010 12:30:24 PM

> Subject: update

>

>

> Saw Dr. Hollander in NY yesterday. He wants to rule out PANDAS, thinks Matt

> should be in a therapeutic school, feels he should do some exposure therapy,

> ordered some drug levels. Basically sounds like my immediate plan is on

target

> and I'll have to wait and see what testing/meds and a new school environment

> will bring. In the short run, I am amazed that Matt was able to go into the

> city (has been agoraphobic). He has good days and bad and has been helping me

> cook and clean for turkey day.

>

>

> Hope you all have a good holiday. We have a lot to be thankful for even

though

> somedays it's hard to remember that.

>

>

> Bonnie

>

>

>

>

>

>

>

>

[Guest guest]

Interesting Bonnie. My dd has had OCD/severe anxiety and panic as part of 3

different things. She clearly had OCD and obsessive thoughts as part of OCD when

she was diagnosed at 12. She also had panic attacks. At 15 she had her first

manic episode and we found out she was bipolar. She had severe anxiety as part

of this but it acted very different then her previous anxiety. Later, and

separate from her bipolar and OCD episodes, she began having severe social

phobia which was part of undiagnosed aspergers. Finally, we had all the parts of

the puzzle and everything made a lot more sense. Anxiety was part of all of it

but it acted different for her depending on the root cause. I hope your son is

able to thrive soon. Happy Thanksgiving. Stormy

________________________________

To:

Sent: Thu, November 25, 2010 6:56:44 AM

Subject: Re: update

Yes, I think everyone is in agreement that there is a mood disorder. The

question is whether his anxiety is truly a manifestation of the bipolar illness

or if it is a co-morbid condition.

I found a fascinating article on a fear of harm phenotype of childhood bipolar

disorder and it seems to fit , though I still believe that there is more

to it as 's worries and fears are quite obsessive in nature. Many OCD

sufferers have that fear of harm obsession. My husband and my mom have a panic

disorder and my husband swears my father-in-law has some OCD.

We are still doing OK - no raging. Still have anxiety and some panic, but we're

doind exposures and stayed in a store for a half hour yesterday! He hasn't

shown any rage or tantrums, but I have now and then seen a little irritability

and low frustration tolerance. Hoping that it doesn't change for the worse.

Thanks and I hope you are well too. Happy Thanksgving

[Guest guest]

How did you fare with your present treatment given the eval?

> >

> >

> > From: bhamelburg <bhamelburg@>

> > Subject: update

> > To:

> > Date: Monday, June 6, 2011, 9:14 AM

> >

> >

> >  

> >

> >

> >

> > As you may recall, my son wasn't doing well post hospitalization in APril

and we began to look into as a next step. Well, he was screened and

accepted as a candidate for admission, but there was no bed there at the time.

Then we found out that we have absolutely no insurance coverage for residential

treatment and have tried without success to get coverage. It's going to cost us

at the least $50K and that would be for the minimum average length of stay.

's meds are causing a lot of side effects right now and I think

residential would cause Matt enough stress at this point that he'd likely be

hospitalized in the middle of residential treatment (another cost). My husband

won't do it at this point. He's lost faith in psychologists, hospitals, and

psychiatrists to help us. I'm starting to agree.

> >

> > I found out last Wednesday that Matt hasn't been attending classes at school

in over 6 weeks - put that with his hospitalization and symptoms before

hospitalization and we have no grades to complete the 6th grade. was

telling me that he was attending classes for at least part of the time. It turns

out that he has not and has been pacing the hallways during all academic classes

since before he was hospitalized. No one at his therapeutic school told me

this!!! I asked for homework weeks ago and got no response. I assumed they were

going light on him because of his anxiety and I thought that his incompletes on

his report card were due to the fact that he had missed some classwork and

needed to make it up. Matt said he took some tests recently (I helped him

study), but I never saw a grade. His therapist at school corroborated this. He

also has not been attending daily therapy and no one told me that either.

> >

> > I am furious. I called the district case manager and we will meet with the

school this week. I am inclined to request a home tutor over the summer (and may

seek an attorney if I need to) to get caught up. I am going to remove

him from this so called " therapeutic school " . I have no where to put him next

year and I honestly don't think there's a place that's right for him. By now,

his avoidant behavior has been accommodated so long that I don't know who could

address it without one on one all day intervention.

> >

> > I have made some headway at home with him. I would homeschool him, but I am

worried about doing it because it feeds into his avoidant behavior and I know

he'll be lonely and bored (not that he isn't now, but over a longer period of

time, it could be worse). I have sent in paperwork to the Yale Child Study Team

for a complete developmental, psychiatric, and academic workup for this summer.

His doctor suggested intensive therapy over the summer as an outpatient.

> >

> > Yikes, I'm in a pickle!

> >

> > Bonnie

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Good Luck...let me know how it goes

 It is so hard finding good treatment. We I feel like we always take 3 steps

forward and 2 steps back.  And its so frustrating for us knowing we have Yale

OCD clinic 20 min away but because of cost we cannot use them-..I think she

would be so much better had we been able to afford to do her treatment there.

Subject: Re: update

To:

Date: Monday, June 6, 2011, 10:32 AM

 

Compared to what charges, Yale is nothing. WHat we're hoping to do is to

get some of the same info would assess and then use good therapists on an

intensive outpatient basis to follow through with the recommendations - the

therapy would be a covered benefit as is partial cost of the testing. If nothing

helped, we may still consider , but for now dh wants to keep it as a last

resort because of it's cost and because we're not convinced enough that it'll

help.

Bonnie

> >

> >

> > From: bhamelburg <bhamelburg@>

> > Subject: update

> > To:

> > Date: Monday, June 6, 2011, 9:14 AM

> >

> >

> >  

> >

> >

> >

> > As you may recall, my son wasn't doing well post hospitalization in APril

and we began to look into as a next step. Well, he was screened and

accepted as a candidate for admission, but there was no bed there at the time.

Then we found out that we have absolutely no insurance coverage for residential

treatment and have tried without success to get coverage. It's going to cost us

at the least $50K and that would be for the minimum average length of stay.

's meds are causing a lot of side effects right now and I think

residential would cause Matt enough stress at this point that he'd likely be

hospitalized in the middle of residential treatment (another cost). My husband

won't do it at this point. He's lost faith in psychologists, hospitals, and

psychiatrists to help us. I'm starting to agree.

> >

> > I found out last Wednesday that Matt hasn't been attending classes at school

in over 6 weeks - put that with his hospitalization and symptoms before

hospitalization and we have no grades to complete the 6th grade. was

telling me that he was attending classes for at least part of the time. It turns

out that he has not and has been pacing the hallways during all academic classes

since before he was hospitalized. No one at his therapeutic school told me

this!!! I asked for homework weeks ago and got no response. I assumed they were

going light on him because of his anxiety and I thought that his incompletes on

his report card were due to the fact that he had missed some classwork and

needed to make it up. Matt said he took some tests recently (I helped him

study), but I never saw a grade. His therapist at school corroborated this. He

also has not been attending daily therapy and no one told me that either.

> >

> > I am furious. I called the district case manager and we will meet with the

school this week. I am inclined to request a home tutor over the summer (and may

seek an attorney if I need to) to get caught up. I am going to remove

him from this so called " therapeutic school " . I have no where to put him next

year and I honestly don't think there's a place that's right for him. By now,

his avoidant behavior has been accommodated so long that I don't know who could

address it without one on one all day intervention.

> >

> > I have made some headway at home with him. I would homeschool him, but I am

worried about doing it because it feeds into his avoidant behavior and I know

he'll be lonely and bored (not that he isn't now, but over a longer period of

time, it could be worse). I have sent in paperwork to the Yale Child Study Team

for a complete developmental, psychiatric, and academic workup for this summer.

His doctor suggested intensive therapy over the summer as an outpatient.

> >

> > Yikes, I'm in a pickle!

> >

> > Bonnie

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

The recommondations they had were pretty similar to what her psychiatrist has

her on medication wise. The therapy has been hard...they recommend CBT. Finding

a therapist that does it correctly was a struggle. The way they described it is

much different than what the therapists we have tried do..... Alot of

therapists say they use CBT but its not exactly CBT....We have a new therapist

that does CBT but I am still not convinced its exactly how Yale would have done

it but I am going to stick it out for awhile and see how it goes..

Subject: Re: update

To:

Date: Monday, June 6, 2011, 10:35 AM

 

How did you fare with your present treatment given the eval?

> >

> >

> > From: bhamelburg <bhamelburg@>

> > Subject: update

> > To:

> > Date: Monday, June 6, 2011, 9:14 AM

> >

> >

> >  

> >

> >

> >

> > As you may recall, my son wasn't doing well post hospitalization in APril

and we began to look into as a next step. Well, he was screened and

accepted as a candidate for admission, but there was no bed there at the time.

Then we found out that we have absolutely no insurance coverage for residential

treatment and have tried without success to get coverage. It's going to cost us

at the least $50K and that would be for the minimum average length of stay.

's meds are causing a lot of side effects right now and I think

residential would cause Matt enough stress at this point that he'd likely be

hospitalized in the middle of residential treatment (another cost). My husband

won't do it at this point. He's lost faith in psychologists, hospitals, and

psychiatrists to help us. I'm starting to agree.

> >

> > I found out last Wednesday that Matt hasn't been attending classes at school

in over 6 weeks - put that with his hospitalization and symptoms before

hospitalization and we have no grades to complete the 6th grade. was

telling me that he was attending classes for at least part of the time. It turns

out that he has not and has been pacing the hallways during all academic classes

since before he was hospitalized. No one at his therapeutic school told me

this!!! I asked for homework weeks ago and got no response. I assumed they were

going light on him because of his anxiety and I thought that his incompletes on

his report card were due to the fact that he had missed some classwork and

needed to make it up. Matt said he took some tests recently (I helped him

study), but I never saw a grade. His therapist at school corroborated this. He

also has not been attending daily therapy and no one told me that either.

> >

> > I am furious. I called the district case manager and we will meet with the

school this week. I am inclined to request a home tutor over the summer (and may

seek an attorney if I need to) to get caught up. I am going to remove

him from this so called " therapeutic school " . I have no where to put him next

year and I honestly don't think there's a place that's right for him. By now,

his avoidant behavior has been accommodated so long that I don't know who could

address it without one on one all day intervention.

> >

> > I have made some headway at home with him. I would homeschool him, but I am

worried about doing it because it feeds into his avoidant behavior and I know

he'll be lonely and bored (not that he isn't now, but over a longer period of

time, it could be worse). I have sent in paperwork to the Yale Child Study Team

for a complete developmental, psychiatric, and academic workup for this summer.

His doctor suggested intensive therapy over the summer as an outpatient.

> >

> > Yikes, I'm in a pickle!

> >

> > Bonnie

> >

> >

> >

> >

> >

> >

> >

> >

> >