Re: Devastated

[Guest guest]

Tamara

I always try to be the person to hold out for that " 1-in-whatever " chance

that things will turn out differently. Hold on to whatever good thoughts you

can muster up right now and just stay focused on doing what's best for your

son. Miracles happen every day - sometimes it only takes a little one to

change the course of events enough to make a difference.

LT

[Guest guest]

Tamara - hang in there! and I too say get him the kitten and let him

skateboard all he wants - you both have a tough road ahead anything to

help either of you should be done - we're here!!!!

Eileen

Quoting Joye <cjoye16@...>:

> Tamara,

>

> I remember feeling as you describe when Tommy was first being diagnosed.

>

> Years later, I don't feel the same way. There is always hope, it's

> just that at times, it is difficult to find it.

>

> You are a wonderful Mom, that's why this hurts so much. Hang in there,

>

> in Southeastern PA

>

> cleopatra_lily <tamara_naranjo@...> wrote:

> My precious son, 10 years old, always so cheerful and full of

> potential, is headed down a scary, lonely road, and he's been robbed

> of his childhood. We finally had the appointment with the good p-

> doc. His diagnosis completely devastated us. exhibits

> signs of both bipolar and the condition worse than that - I can't

> even write it or say it without crying. Because of the early onset,

> the p-doc says he'll have a severe form of the disease.

>

> Even if he can't finish college or get a good job, I just want him to

> be happy and independent, to have a wife and children. He is so good

> with younger children and would make such a good father. He is an

> only child and I'm scared for him to be all alone when he's older.

> I'm sad that he'll have to take many strong medications and deal with

> side effects for the rest of his life. I'm sad that he's headed for

> unbearable suffering, possibly suicide. As awful as it sounds, I've

> always felt that I couldn't blame people with that condition who kill

> themselves, because I thought their life wasn't worth living. That

> last statment makes me cry the most. He has always been self

> conscious and just wanted to fit in. Through 2nd grade he was

> extremely sociable at school and very well liked. But in the past 2

> years he has lost touch with his friends at school. The kids on the

> street that he desperately wants to play with have been really mean

> to him. It crushes me to think that he's bound for loneliness and

> riducule by the kids in the neighborhood.

>

> There are 2 things that will keep him going for now. He's become

> obsessed with skateboarding. He thinks about it 24/7. We've been

> taking him once or twice a day to the skatepark, where he practices

> and talks to other skaters. Over the past year or so he's begged and

> pleaded to get a kitten. We've always said " no " because we have 2

> old, arthritic, very sensitive cats, a long with a dog and a rabbit.

> Now I can't care how a kitten will affect the older cats, needs

> a loyal furry friend who can sleep on his bed and give him comfort.

>

> He has obsessive qualities, but OCD isn't his biggest problem. I'll

> have to find an online support group for parents of bipolar kids.

>

> Tamara

>

>

>

>

>

>

> ---------------------------------

> How low will we go? Check out Messenger’s low PC-to-Phone call rates.

>

>

[Guest guest]

In a message dated 7/27/2006 8:49:52 P.M. Eastern Standard Time,

jchabot@... writes:

Secondly, always a get another opinion for a new diagnosis.They could be

wrong!

Judy-

You go girl -- well said. I agree.

LT

[Guest guest]

Tamara,

I belong to one that I dont' post on, just read. It's a group

" Parents of bi-polars " . It's very active. About a month ago our pdoc

suggested that my 11 yr. old was showing signs of bi-polar and so I

joined the group. I don't see any signs of it, and the pdoc has since

changed her tune, but I'm still a member and read the list.

I'm sorry that your are going through such a difficult time.

Dina

[Guest guest]

Tamara,

Just want you to know my prayers and thoughts are with you. Sometimes

psychiatrists can be very pessimistic, but there is always hope. No one has

a crystal ball into your son's future no matter what the diagnosis. There

is hope even for things like schizophrenia which is very serious. If a

parent catches these types of illnesses when a kid is young, treatment can

help at least somewhat and new options are becoming available all the time.

Recently, someone I know was telling me a very inspiring story about a

friend she had. She had a neighborhood friend who was in early adolescence

when he became schizophrenic-hearing voices and having delusions. He became

severely ill and his parents were despairing about his future. Well, they

got him treatment and he took some medication and his life totally turned

around. The voices stopped and he went on to college and is living a pretty

normal life despite his illness. This story I was told really meant

something to me because I happened to know the kid also-he was a really nice

kid and then one day his life simply unraveled. When I heard how well

things turned out, it really made me feel great and made me believe that

there is always hope for things to improve. I pass this story along to you

as well as my wishes for things to improve-

Debbie

Devastated

My precious son, 10 years old, always so cheerful and full of

potential, is headed down a scary, lonely road, and he's been robbed

of his childhood. We finally had the appointment with the good p-

doc. His diagnosis completely devastated us. exhibits

signs of both bipolar and the condition worse than that - I can't

even write it or say it without crying. Because of the early onset,

the p-doc says he'll have a severe form of the disease.

Even if he can't finish college or get a good job, I just want him to

be happy and independent, to have a wife and children. He is so good

with younger children and would make such a good father. He is an

only child and I'm scared for him to be all alone when he's older.

I'm sad that he'll have to take many strong medications and deal with

side effects for the rest of his life. I'm sad that he's headed for

unbearable suffering, possibly suicide. As awful as it sounds, I've

always felt that I couldn't blame people with that condition who kill

themselves, because I thought their life wasn't worth living. That

last statment makes me cry the most. He has always been self

conscious and just wanted to fit in. Through 2nd grade he was

extremely sociable at school and very well liked. But in the past 2

years he has lost touch with his friends at school. The kids on the

street that he desperately wants to play with have been really mean

to him. It crushes me to think that he's bound for loneliness and

riducule by the kids in the neighborhood.

There are 2 things that will keep him going for now. He's become

obsessed with skateboarding. He thinks about it 24/7. We've been

taking him once or twice a day to the skatepark, where he practices

and talks to other skaters. Over the past year or so he's begged and

pleaded to get a kitten. We've always said " no " because we have 2

old, arthritic, very sensitive cats, a long with a dog and a rabbit.

Now I can't care how a kitten will affect the older cats, needs

a loyal furry friend who can sleep on his bed and give him comfort.

He has obsessive qualities, but OCD isn't his biggest problem. I'll

have to find an online support group for parents of bipolar kids.

Tamara

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[Guest guest]

Tamara,

First of all, you have to hang in there!

Secondly, always a get another opinion for a new diagnosis.They could be

wrong!

Even if he has what you think, he can still make a life for himself , with

college and a family.

Please e-mail me if you want to talk off board. You know my dd has ocd and

bipolar, along with other diagnosis's .At first, I thought her life was over,

because she was diagnosed with the bp at age 6. She has been on and off many

dangerous meds, and she's still doing very good.I'm not going to say it's been

easy, but remember, sometimes with age comes a little maturity. All A's and B's,

team gymnast. they told us she would never be able to handle gymnastics or a

regular class, especially with her good grades, with her diagnosis's

Think optimistically!!!!!!! Take things one day at a time!

Hugs

Judy

jchabot@...

[Guest guest]

Dear Tamara,

First of all, I am so sorry that you are reeling from such a devastating

diagnosis. It's so hard to be hit with such scary news. I want to reassure you

that things may not be as dire as they seem now though. Our neighbor was

diagnosed as a teenager with (in addition to all the other stuff that seems to

minor in comparison, like OCD and ADHD) bipolar disorder and schizophrenia. She

was on lots of medication for several years and had a hard time for a while, but

is now 20 and off all medication (her choice). She is stable, in love and

engaged to be married, working, etc. I don't know what happened - perhaps the

diagnosis was wrong? In any case, she is doing a million times better than

anyone ever could have predicted back when she was being repeatedly

hospitalized. So have hope!

Secondly, I applaud your decision to get a kitten. My nephew, who has

Aspergers and no friends, got a kitten a couple of years ago and it changed his

life. He is soooo thrilled to have someone who loves him unconditionally and

accepts him for who he is. I think it will help your son immensely.

Finally, if you have any doubts at all, get a second opinion. In your

shoes I'd probably take my child to the best psychiatrist in the field, no

matter what it cost, just to get an expert second opinion. How you treat

different disorders makes so much difference, especially when you are faced with

using some very powerful medications with serious side effects.

I hope you find peace with this sooner rather than later, and I wish

you the best. Hang in there,

in NV

[Guest guest]

Tamara,

First of all *hugs*. You do have a hard battle ahead of you. I

can understand your fears for your son. Let me explain why..

I have Bipolar with ocd tossed in there, among a smattering of

other things. For years I was just told it was ocd. My son.. who is a

spitting image of me, has been diagnosed with OCD and the fear that he will

be given the same diagnosis as me terrifys me, because I know how difficult

being Bipolar can be.

With that in mind.. I am a mental health professional also. I

work with people every day with many diffrent mental illnesses. I see quite

a diffrence in the people who were diagnosed at a younger age and people who

were diagnosed much later in life.

It is possible to have a terrific life with a bipolar

diagnosis. Yes, there are difficulties. But the younger a person is the more

likely they have built up better coping skills and understanding of their

condition.

I have no doubt that your son will be one of these well

functioning adults because he has a mom that cares so much and is willing to

support him. By having that he has someone who is going to be able to help

him through the rough times and will teach him the best things she can.. how

to deal with lifes stressors,

I hope you find yourself a good support group. I know that this one

has been a godsend to me, and I have only been a member a short time. You

are doing a wonderful job, remember this through the rough times and you

will do terrific.

Blessed be..

[Guest guest]

Hi , just wanted to say a very uplifting story/reply.

Congratulations to you also, as I can imagine there were some

struggling years there when you were told it was *just* OCD!

(who has/had a smattering of lots of things these 48 years!)

>

> Tamara,

>

> First of all *hugs*. You do have a hard battle ahead

of you. I

> can understand your fears for your son. Let me explain why..

>

> I have Bipolar with ocd tossed in there, among a

smattering of

> other things. For years I was just told it was ocd.

[Guest guest]

Tamara,

I don't post that frequently, but I have been following your story.

You have received many supportive posts, and I hope the wonderful

stories many have shared on here will help give you the hope for a

brighter future. I know you feel devastated at this point, but I

believe these stories can help inspire you after receiving what feels

like such grim news from the new p-doc. As you know, many doctors

want to prepare us for the worst, but the worst oftentimes never

comes to pass. Keep us informed - our thoughts are with you.

>

> My precious son, 10 years old, always so cheerful and full of

> potential, is headed down a scary, lonely road, and he's been

robbed

> of his childhood. We finally had the appointment with the good p-

> doc. His diagnosis completely devastated us. exhibits

> signs of both bipolar and the condition worse than that - I can't

> even write it or say it without crying. Because of the early onset,

> the p-doc says he'll have a severe form of the disease.

>

> Even if he can't finish college or get a good job, I just want him

to

> be happy and independent, to have a wife and children. He is so

good

> with younger children and would make such a good father. He is an

> only child and I'm scared for him to be all alone when he's older.

> I'm sad that he'll have to take many strong medications and deal

with

> side effects for the rest of his life. I'm sad that he's headed

for

> unbearable suffering, possibly suicide. As awful as it sounds,

I've

> always felt that I couldn't blame people with that condition who

kill

> themselves, because I thought their life wasn't worth living. That

> last statment makes me cry the most. He has always been self

> conscious and just wanted to fit in. Through 2nd grade he was

> extremely sociable at school and very well liked. But in the past

2

> years he has lost touch with his friends at school. The kids on

the

> street that he desperately wants to play with have been really mean

> to him. It crushes me to think that he's bound for loneliness and

> riducule by the kids in the neighborhood.

>

> There are 2 things that will keep him going for now. He's become

> obsessed with skateboarding. He thinks about it 24/7. We've been

> taking him once or twice a day to the skatepark, where he practices

> and talks to other skaters. Over the past year or so he's begged

and

> pleaded to get a kitten. We've always said " no " because we have 2

> old, arthritic, very sensitive cats, a long with a dog and a

rabbit.

> Now I can't care how a kitten will affect the older cats, Chris

needs

> a loyal furry friend who can sleep on his bed and give him

comfort.

>

> He has obsessive qualities, but OCD isn't his biggest problem.

I'll

> have to find an online support group for parents of bipolar kids.

>

> Tamara

>

[Guest guest]

Hi,

It looks like my message didn't post – I hate when that happens. If

it does post later, this will be repetitive.

Thank you for all the replies RE my son's recent diagnosis. The

encouragement and stories of hope from this group have helped me to

feel so much better. Friday morning was the last time I cried. I

wanted to respond sooner, but: 1) I was digesting the information

and 2) we took a few days off for family day trips and haven't been

home much. Over the next day or so, I will reread and respond to

posts.

, the story of your bipolar daughter's struggles and successes

is inspirational. Since there are quite a few parents of bipolar

children in this group, I did hesitate to express my feelings of

doom. What scared me the most was not so much the bipolar diagnosis,

but the idea that it could be something worse than bipolar

(schizophrenia), and hearing that whichever condition he has, it will

be a severe form.

After months of enduring countless appointments and long drives,

can't deal with talking about how he feels anymore.

After the appt., when he said very little, I explained that from now

on, he'll only have to talk to the new, local doctor, and that he

needs to be honest so the p-doc can determine the meds that will work

best. Even though didn't talk, the p-doc did review in advance

all of the records, timelines and notes I provided. Hopefully, once

is more forthcoming, the doctor can give me more answers.

The doctor says he can't rule out schizophrenia because hears

voices. All the time (I think), he hears critical voices that tell

him that he's stupid, ugly, badly behaved and selfish, and they doubt

his decisions and call him him a liar. I'm dying to learn the

difference between biplar and schizophrenic voices, but I haven't

found anything on the internet. He has bipolar symptoms, including

major depression, black and white thinking (unless that is an OCD

symptom), and he experienced horrible mood switching and suicidal

thoughts on SSRIs. It's possible that he's had mood switching all a

long that I didn't recognize, because he does have goofy moods where

he can't seem to control himself, and when we impose a consequence or

say anything critical of his behavior, he has complete meltdowns and

hates himself. He has obsessive, OCD tendencies too, but I'm not

sure at this point which symptoms are OCD.

Not sure if this is a bipolar or schizophrenic thing, but, on the

SSRI, he mentioned a couple of times that nearby conversation sounded

like nonsense. The first symptom he complained about was thinking

differently from other people, deep thinking, and constant worrying

about bad things happening to him and family members. He also

imagines things like himself dying, hitting me in the head with a

rock, and doing things to hurt people's feelings, like destroying a

gift and saying that he hates it. All of these thoughts and images

make him feel sad.

In so many ways, doesn't fit what I've read about children who

become schizophrenic. As a baby, he was content, cheerful, and was

able to soothe himself. Until, about 2 years ago, he was always

happy, friendly and well liked in school. He is still well liked in

school, but he stopped connecting with kids outside of school when

neighborhood kids started to include him, though they are often

pretty mean. Up until partway through the past school year, he has

been an above average student. He also excels in sports.

Hopefully, these are indicators that with help and the right meds,

he'll have a head start in developing coping skills and the ability

to conquer upcoming challenges.

Thanks again for the support. This group makes it so much easier to

cope.

Tamara

[Guest guest]

Hi ,

I'm hoping 's voices are due to bipolar disorder and OCD &

not schizophrenia. Someone (, I think), said that

psychiatrists are pessimistic and they give worst-case scenarios to

prepare you for the worst. I think that's what this doctor was

doing. He didn't actually say that may be schizophrenic, but

that he can't say that he won't turn out to be schizophrenic.

(There's a difference, I think.) We met with him for an hour & that

bombshell came at the end of the session, when there was no time left

to ask questions. Even if he could have been more sensitive in

conveying the info, I do have faith in him. has seen 3 other p-

docs (one was in a hospital children's unit and another was in the

hospital's day program.) The other 3 can't compare to this doctor's

level of knowlege RE children's psychiatric meds, availability for

f/u appts. and return phone calls, and interest in reading every

available medical report since 's birth, and my own

extensive notes and time lines. He is working closely with

's new psychologist. Even though the diagnosis floored

me, I left feeling that is finally in the hands of capable,

caring doctors.

For the first couple of days, after realizing that will have a

much more difficult life than I had hoped for him, I was in mourning

mode. I'm so glad to know that he'll be able to get married and have

a fulfilling life. Up until the diagnosis, I was numb, and I managed

to not cry both times when we left him in the psychiatric hospital.

Once I have a better idea of what he's dealing with, I know that I'll

be able to advocate for him and provide the emotional support he'll

need.

Tamara

[Guest guest]

Hi Judy,

Thank you for your encouraging post. I'm starting to feel hopeful

and optimistic that that is bipolar with OCD bad thoughts &

that he will not be schizophrenic. He does alternate between hating

everything about himself and then admiring his eyes and physique and

bragging about his skateboard skills. He has never spoke in a " word

salad " manner and he does not hear conversations in his head - are

those symptoms of schizophrenia as opposed to bipolar? I'm also very

happy to hear about a woman with schizoaffective disorder who is

thriving in college. In my web searches, I read somewhere that a

combination of the 2 disorders can actually be more easily managed

than a severe case of one of the disorders.

Despite childhood onset being more severe, I liked what one woman

posted (I will reread last week's posts and respond later)RE children

being resiliant, and with the right support, they will learn coping

skills at an early age. It is also encouraging to know that newer

meds offer people who are bipolar and schizophrenic a quality of life

that they couldn't have attained 10+ years ago.

Tamara

[Guest guest]

Hi,

After rereading all of the wonderful advice and support from last

Thursday and Friday, I am in such a better state of mind than I was a

few days ago. I want to emphasize that when I expressed feelings of

hopelessness, I was thinking of schizophrenia, not bipolar disorder.

Through this group I have learned that bipolar disorder, even at its

most severe, is a manageable condition. Over the weekend, in talking

to my friends and family, I heard even more encouraging stories of

successful, happy people living with bipolar disorder.

I feel better about the idea of having a severe form of

bipolar (early onset = more severe), after several people (,

. . .) pointed out that when diagnosed early, children are able

to develop the coping skills that will help them to handle future

challenges.

, and Debbie, your posts made me fear schizophrenia less.

It was inspiring to hear about people living fulfilling lives despite

the illness. I am feeling confident now that will not

have the illness, but even if he does, I realize that there is no

reason to give up hope. , I just reread how your daughter was

diagnosed at 11 years as bipolar with possible schizophrenic

tendencies – even more reason to believe that will not be

schizophrenic.

What I've assimilated from all of the posts is that, despite the

diagnosis of a serious mental illness, children grow up to live

meaningful, fulfilling lives when they are nurtured by caring parents

who educate themselves and provide a supportive environment. My

mourning period is over. I'm ready to provide that environment for

.

Tamara

[Guest guest]

Sandi,

I am so sorry. Could it be that Jack didn't have a

growth spurt? Just a thought. We are eager to hear

what the doctor says. had no improvement after

his first cast and many knowledgable moms told me to

find out if he is flexible or rigid. Maybe that will

help get some answers.

I will say a prayer right now!

Jill and

--- " *\\o/* San *\\o/* " wrote:

> Jack had his cast cut off today and the resident

> insisted on x-rays

> immediately after. He was casted at 64° with an

> RVAD of 45° - today,

> just after his cast was removed, he had a 70° curve

> with a 50° RVAD.

>

> I have no idea what is in store for this little guy

> and my heart is

> just breaking. I pray, pray, pray that this works

> next time and we

> see ANY improvement. Do we need more frequent

> castings? What do I

> do?

>

> Sandi

>

________________________________________________________________________________\

____

Need a vacation? Get great deals

to amazing places on Yahoo! Travel.

http://travel.yahoo.com/

[Guest guest]

Hi Sandi,

I am so sorry to hear the news. Please let us know as soon as you can how the

casting goes and the #'s that go along with it. I wish I could say something to

make you feel better. Just know that you are in my thoughts and prayers and

take comfort knowing how many people care Jack's a lucky little guy to have

you for a mom!!!

Misty and Haley

" *\\o/* San *\\o/* " wrote:

Jack had his cast cut off today and the resident insisted on x-rays

immediately after. He was casted at 64° with an RVAD of 45° - today,

just after his cast was removed, he had a 70° curve with a 50° RVAD.

I have no idea what is in store for this little guy and my heart is

just breaking. I pray, pray, pray that this works next time and we

see ANY improvement. Do we need more frequent castings? What do I

do?

Sandi

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

Check out the hottest 2008 models today at Yahoo! Autos.

[Guest guest]

Sandi,

It sounds like Jack has a relentless curve. I'm very sorry to hear this

news. If you dont mind, I will inform Miss Mehta upon her return from

Italy, next week. Try to keep in mind that perhaps casting can buy him

some growing time before anything definitive is done, and can maintain his

rapidly progressing curve until you and the docs figure out the best plan

of action. Look into the halo procedure (for the future), the VEPTR and

its hybrids, the possibility of buying more growing time with cast/brace

alternations. The treatments for progressive infantile scoliosis are few,

but you do have some options to discuss with Jacks doctor. 10 years ago

there were no options except to “wait and watch” until fusion. I know

this is no consolation for the fear you are experiencing right

now...Sorry…

I am sure that the jacket Miss Mehta applied at least helped him to

maintain his rapidly progressing curve(s). His curve(s) might have

increased drastically without the jacket..... As you know, ET is new in

the orthopaedic world. Remember, Jack wasnt offered ET. It was you who

did the research and got him to the appropriate place for treatment. You

are doing the best you can for your son. Please know that you are not in

this alone. We are all thinking and praying for you. You and the docs

will figure out the best plan, and little Jack will do well.

Please let us know how everything went this a.m. Everyone on this group is

pulling for you guys.

Call me direct if I can help in any way.

And, continue to maintain faith and believe in miracles. Maybe this last

jacket loosened him up a bit, and this next jacket will hold and show some

correction.

HRH

> Hi Sandi,

>

> I am so sorry to hear the news. Please let us know as soon as you can how

> the casting goes and the #'s that go along with it. I wish I could say

> something to make you feel better. Just know that you are in my thoughts

> and prayers and take comfort knowing how many people care Jack's a

> lucky little guy to have you for a mom!!!

>

> Misty and Haley

>

> " *\\o/* San *\\o/* " wrote:

> Jack had his cast cut off today and the resident insisted on

> x-rays

> immediately after. He was casted at 64° with an RVAD of 45° - today,

> just after his cast was removed, he had a 70° curve with a 50° RVAD.

>

> I have no idea what is in store for this little guy and my heart is

> just breaking. I pray, pray, pray that this works next time and we

> see ANY improvement. Do we need more frequent castings? What do I

> do?

>

> Sandi

>

>

>

>

>

> ---------------------------------

> Check out the hottest 2008 models today at Yahoo! Autos.

>

>

[Guest guest]

Sandi,

This brings tears to my eyes. I feel your pain and frustration. We've

been experiencing the same with Max since 08/2006 with a curve that

just won't hold in any cast regardless of who placed it..Dr. Sturm,

Dr. , or Miss Mehta.

I'm sure by now you have Jack re-casted and have spoken with Dr.

Sturm. There is always a margin of error to consider in who is

reading the x-rays. From your post, it appears Dr. Sturm hadn't yet

seen Jack's x-rays.

I urge you to not give up hope on casting. If the best thing casting

can do is buy Jack time before any type of surgery, then casting has

helped. It has bought Max 1 full year now, and hopefully a few more

months.

Being in your shoes, I feel we have done everything we can for Max,

and you are for Jack. We need to continue to give our children the

best quality of life, even if it means having to watch them struggle.

I am very interested in the feedback Dr. Sturm was able to give you

today. Max went from his first cast of 54 degrees out of cast to 8

casts later in 1 year 80 degrees out of cast. I know the curve

progressed with every growth spurt.

If you need to talk, please let me know. I'll e-mail you my home and

work number.

You are in my thoughts and prayers. Hang in there!

Aekta

>

> Jack had his cast cut off today and the resident insisted on x-rays

> immediately after. He was casted at 64° with an RVAD of 45° - today,

> just after his cast was removed, he had a 70° curve with a 50° RVAD.

>

> I have no idea what is in store for this little guy and my heart is

> just breaking. I pray, pray, pray that this works next time and we

> see ANY improvement. Do we need more frequent castings? What do I

> do?

>

> Sandi

>