Any suggestions?

October 18, 2000

Lana~

My son is five and we are dealing with the same sort of thing right now. He has to have three fillings and three root canals, he got my teeth. And since he is so little and combative he has to go under sedation to have the work done and it will most likely be in the hospital. But he also worries about everything. He worries that something is going to happen to him and if I tell him now then I know that he will worry over this until it is all done and over. And how horrible to worry about something that scary, I can't imagine thinking that I am going to die for weeks before the actual event itself. So I also don't know how to tell him. Right now I am just planning to wait until the day of and then tell him. That way at least he won't be concerned for to long. And I probably won't tell him much of what they are going to do unless he asks.

I will be watching for this thread also as I would love some insight into how to handle this sort of situation.

Lana <ocdkids@...> wrote:

We told he has OCD-that didnt go like I had wanted, but then again I didnt know how I wanted it to go! He listened, asked if it was contagious, then said I dont want to talk about OCD anymore. That was Saturday, We have had very little conversation (about anything) since then, certainly not for lack of trying. I know he needs his time to accept and will have questions when he is ready. I know his reaction is normal and we need to give him time.I now have to tell him that he has a hernia and will need surgery to repair it. WOW! How do I do this...s obsessions are that things are going to kill him..if its fire, being hit by a baseball, a hurricane,or being sick, he thinks he will die. How can I explain to him that he NEEDS this surgery. I am telling him that he is to do\have something that I know will terrify him, I'll be giving him a worry to obsess over. I'm really having a hard time with this. He has not yet started therapy, so we have no experience on facing a fear or gradually accepting a challenge. I hope I'm making sense~I just dont know and would appreciate any suggestions you have.Lana in GAYou may subscribe to the OCD-L by emailing listserv@... . In the body of your message write: subscribe OCD-L your name. You may subscribe to the Parents of Adults with OCD List at parentsofadultswithOCD . You may access the files, links, and archives for our list at . Our list advisors are Tamar Chansky, Ph.D., and Aureen Pinto Wagner, Ph.D. Our list moderators are Birkhan, Kathy Hammes, Jule Monnens, Gail Pesses, Roman, and Jackie Stout. Subscription issues, problems, or suggestions may be addressed to Louis Harkins, list owner, at harkins@... .

December 6, 2000

gail,

i swear there is something called a " preschool waiver " i know you looked into

this, i think that is what you told me.... but i did it with ashton and she

stayed in preschool until age 6, then went into kindergarten and regular

school... maybe the law has changed or that was a DOD rule, who knows, but i

know it existed three years ago.....

December 6, 2000

Gail:

First, cool technique for making objects!! Much better than anything I've

seen. Very cool.

If you don't know this, the representation heirarchy is said to be

object-->photo-->color drawing-->black and white drawing-->symbols. Good

for them for finding a way to doit.

Regarding your meeting, I tihnk it is a good strategy to go in and

continually come back to the successes that Seth has made in this

environment, and that you are concerned first and foremost about Seth's

success--not a political agenda. By doing this, you have just acknowledged

that you know they have one without challenging them. Bring it back to what

Seth needs to learn. Keep the discussion centered ONLY on what SETH needs

to learn.

My guess is that the accomodations and supports/services will be more

available and understood in the preschool. To my knowledge, and I could be

wrong (but I don't think so), there's nothing in IDEA that says at age 5

the child must go to the K class. What it say sis that the the funds for

him go to the school age folks and eligibility is effected. Is there a

political bridge between teh programs? For instance, in Portland the EI

program is administered by Portland Public Schools, so really it's just a

matter of funneling a line item to the right place.

Present it perhaps with this analogy. 1) transitions are tough for Seth. he

is succeeding in this environment, but it has taken time to get all the

pieces into place. YOu'd like to extend the time he is exposed to this

environment without having to cope with transition to a new place. it is

similar to deciding to repeat kindergarten or second grade rather than

movign forward. ANd...he's going to be in school services until he's

21...that if he's going to repeat a grade, this is the time to do it with

the least emotional impact.

Dare them (without making it sound like a dare) to explain to you a reason

other than funneling of money or other money related services why it would

be more beneficial to move Seth.

Remember that placement comes AFTER the IEP is written. Try to purposefully

write language in his goals that reflect the environment he is currently

in. Word them with strategies that are not available in K, but are in his

current placement.

Those are my suggestions. Bring it back to SETH each and every time. Make

them sell YOU on a move because you and his current team know what's best.

Also, see if you can convince the current team members to SAY that it is

their recommendation for him to stay. If they say that, there's little they

can do to move him out and be working within the intent of IDEA97.

Good luck!

j

got any pictures of these objects? Does he have a schedule with them? Did

they make two sets so you can have one for home?

December 7, 2000

In a message dated 12/6/00 11:39:30 PM Eastern Standard Time,

smilinggail@... writes:

<< He can't

identify pictures so they took clear acrylic and placed objects that he can

recognize into a small disposable plastic cup and covered it with the

acrylic. When it dried they peeled off the cup and had the object encased

in

a little clear disc. Foods like fruit loops, pieces of peanutbutter and

jelly sandwiches, fruit snacks etc... They even did pictures of toys and

stuff in the acrylic because he responded so well to an *object* instead of

a

picture. >>

There is a mom at Melmark who did this for her child. Some kids are just

very tangible. We were lucky that Maddie was at least able to recognize the

real pics that I took. Now we're working on the PECS.

<<So, on with problem. I have a meeting tomorrow with a few of

the *powers that be* regarding Seth aging out of preschool. The teacher,

case worker and I all agree that he is not ready to leave this program yet

and want to keep him in it another year. Is there any law that states that a

disabled child can get a preschool waiver?>>

Yes Gail, there is. We did this with Maddie. By the time she left early

intervention, she was 7 years old. My neighbor is also doing this with her

child and I am pretty sure it's regulation. I know it's in our state regs.

I forget, what state are you in?

<<One friend on the cpse board told me it has been done before, but it's

not easy and another friend on the board told me to hire a lawyer and I would

get what I wanted in a matter of hours. Doesn't sound like a fair game where

the best interest of the child is the main concern to me. So, anyone have

any suggestions on how I should approach this?>>

Gail, when we did it, we didn't have to contact anyone. I just let the

social worker at Maddie's school know that I wanted an extra year of EI and I

signed the waiver. That was it. At the IEP from HE** to get Maddie into

MM, I was trying to get an advocate come to my meeting, but as it turned out,

between me, dh, Maddie's teacher and the social worker, there were NO better

advocates than us!!!! But sometimes it really helps to have an advocate

there with you.

Just don't sign anything---not til you come home and think about where you go

from there!!!!

Donna (waiting to hear how you make out)

December 7, 2000

that acrylic thing sound rather neat, will have to keep that in mind.

Re: any suggestions?

> In a message dated 12/6/00 11:39:30 PM Eastern Standard Time,

> smilinggail@... writes:

>

> << He can't

> identify pictures so they took clear acrylic and placed objects that he

can

> recognize into a small disposable plastic cup and covered it with the

> acrylic. When it dried they peeled off the cup and had the object

encased

> in

> a little clear disc. Foods like fruit loops, pieces of peanutbutter and

> jelly sandwiches, fruit snacks etc... They even did pictures of toys and

> stuff in the acrylic because he responded so well to an *object* instead

of

> a

> picture. >>

>

> There is a mom at Melmark who did this for her child. Some kids are just

> very tangible. We were lucky that Maddie was at least able to recognize

the

> real pics that I took. Now we're working on the PECS.

>

> <<So, on with problem. I have a meeting tomorrow with a few of

> the *powers that be* regarding Seth aging out of preschool. The teacher,

> case worker and I all agree that he is not ready to leave this program yet

> and want to keep him in it another year. Is there any law that states

that a

> disabled child can get a preschool waiver?>>

>

> Yes Gail, there is. We did this with Maddie. By the time she left early

> intervention, she was 7 years old. My neighbor is also doing this with

her

> child and I am pretty sure it's regulation. I know it's in our state

regs.

> I forget, what state are you in?

>

> <<One friend on the cpse board told me it has been done before, but it's

> not easy and another friend on the board told me to hire a lawyer and I

would

> get what I wanted in a matter of hours. Doesn't sound like a fair game

where

> the best interest of the child is the main concern to me. So, anyone have

> any suggestions on how I should approach this?>>

>

> Gail, when we did it, we didn't have to contact anyone. I just let the

> social worker at Maddie's school know that I wanted an extra year of EI

and I

> signed the waiver. That was it. At the IEP from HE** to get Maddie

into

> MM, I was trying to get an advocate come to my meeting, but as it turned

out,

> between me, dh, Maddie's teacher and the social worker, there were NO

better

> advocates than us!!!! But sometimes it really helps to have an advocate

> there with you.

> Just don't sign anything---not til you come home and think about where you

go

> from there!!!!

> Donna (waiting to hear how you make out)

>

June 1, 2001

Gosh I wish I could offer ideas Kate. I'm too new into this.

Instead you have my well wishes and prayers.

--

dx Graves/hyperT Feb/2001; (treatment Toprol Xl and PTU)

June 1, 2001

One thing that comes to mind is autoantibodies to T4 and T3. These can bind

with your thyroid hormone and never reach the cell receptor. That would

explain why your TSH is climbing. Or you could have TSH antibodies that are

interfering with the TSH assay. Quest Diagnostics does Antibody titers for

T3, T4 and TSH. Although these are rarely seen, they would explain your

results.

You could also have a condition known as thyroid resistance where your body

doesn't respons to thyroid hormone. Hope you can figure out what's going on.

Keep us posted, Elaine

July 15, 2001

tonya, my daughter age seven, systemic jra, did get some

relief from soaks in the tub with epsom or just regular bath salts,

only thing is if she can get in the tub with out being in too much

pain, once she soaks it may give her some relief, the fevers are

still with us after several years, my daughter most days can go to

school, although she does sometimes get very cranky, especially when

the rash is present with the fever, on those days , look out, and

nothing seems to help, I hope the bath soak will help, please let us

know how she's doing, my heart goes out to you, this is very

difficult. Take care, Lora

> My daughter Terah (5) was just diagnosed with systemic JRA

> she was originally diagnosed with Kawasaki syndrome but

> after almost 8 weeks of no improvement and a sed rate of 117

> her diagnosis changed. The symptoms of the two are almost the

> same except Kawasakis is a short term disease usually 4-6 weeks.

> She has been on prednisone for approx 6 weeks her beginning dose

> was 40MG once we got down to 20MG she relapsed and started over

> at 40MG again. She is now at 17.5MG (since Friday) and her body

just

> can not seem to handle this low of a dose. Her fever seems to never

> go away and the only thing

> she can take is Tylenol because she just started Methotrexate

> on Friday. Her knees are almost the size of softballs and

> she can't walk and she can hardly even roll over. It is now almost

> 12PM and she still has not gotten up. She complains that her whole

> body hurts and I just do not know what to do for her!!

> Is there anything I can do to make her more comfortable?

> Tonya

July 15, 2001

Tonya,

's rheumy suggested a warm bath upon arising in the am for

the stiffness and pain.

Teri

July 16, 2001

Dear Tonya:

My heart goes out to you. Your letter reminds me of the early days of

Mickey's diagnosis (she was diagnosed at 3 with systemic onset jra, is now

7). Despite the fevers, the only thing that helped Mickey feel better when

it was that bad was warm baths. I would get in with her and gently support

her against me while she floated. It never really made the fevers worse, and

she got a lot of pain relief during the baths and for a while after. That

phase went on so long we ended up getting a hot tub. We have a soft-tub - a

round, portable sort of hot tub that can be set up anywhere, about 6 feet

across, and one depth, about 2 1/2 feet, I guess. Its got a rubber liner so

its perfect for kids, no slipping. It's been a life saver - our best ever

money spent. We were lucky to get it second hand... but I think they are

about $2900 (canadian) new.

Other than that... there isn't much, I'm sorry to say. We got one of those

sheepskin type mattress covers to make the surface softer for her, that

helped a little. I found Mickey's appetite was non existant at such times,

and we had to resort to giving her Pediasure - kind of a meal supplement for

kids with vitamins and minerals in it. Lots of " freezies " and popsicles,

too. I used to read stories to her a lot to distract her - its a hard time,

but it doesn't last forever, though it may seem like it now. The beginning

is the hardest, but once the docs find the right combination of medications

and get Terah's symptoms under control, it will get better. Hang in there.

Lynn

From: tonyal@...

Reply-

Date: Sun, 15 Jul 2001 16:54:11 -0000

Subject: any suggestions?

My daughter Terah (5) was just diagnosed with systemic JRA

she was originally diagnosed with Kawasaki syndrome but

after almost 8 weeks of no improvement and a sed rate of 117

her diagnosis changed. The symptoms of the two are almost the

same except Kawasakis is a short term disease usually 4-6 weeks.

She has been on prednisone for approx 6 weeks her beginning dose

was 40MG once we got down to 20MG she relapsed and started over

at 40MG again. She is now at 17.5MG (since Friday) and her body just

can not seem to handle this low of a dose. Her fever seems to never

go away and the only thing

she can take is Tylenol because she just started Methotrexate

on Friday. Her knees are almost the size of softballs and

she can't walk and she can hardly even roll over. It is now almost

12PM and she still has not gotten up. She complains that her whole

body hurts and I just do not know what to do for her!!

Is there anything I can do to make her more comfortable?

Tonya

To manage your subscription settings, please visit:

For links to websites about JRA:

http://www.geocities.com/Heartland/Village/8414/Links.html

July 29, 2003

Hi ,

I don't have any good suggestions but I think you should trust your mommy

instinct. If something does not seem to be adding up--go for another

opinion--preferably a pediatric immunologist who is willing to do a complete

evaluation. A middle of the road approach may be to have the pediatrician order

all the

blood work now and you can see if there are any drastic changes to the

numbers. That way you could have most of the blood test results back by early

September and it might help you make decisions about what to do about school.

Good luck.

--Martha

August 10, 2003

Hey Peggy,

I am sorry to hear you are suffering like the rest of us. Although I

guess thats whats brought us all together. I too suffer from L4/L5

disc problems. I had a Laminectomy and a Discectomy done last August

and am now strongly considerin fusion sa the surgeries last year

didn't fix the problems completely. Though I have not had fusion

those that I have talked to and information from sites such as

www.spine_health.com and www.back.com have lead me to believe that

after fusion as long as you committ to a rehab program and stick with

it you will 90 to 95% of your flexibility and range of motion after 3

to 4 months. As far as questions for your doctor. I have sought out

the opinion of 3 different specialists just to make sure of my

options. Some of things I asked were " What is the least invasive

procedure that would help me " " Whats the shortest/longest recovery

involved with ()fill in the blank) procedure. " What kind of results

can I expect if I go through this surgery? " " How many surgeries have

you preformed? " " What kind of rehab is recommended after my initial

recovery? " . Well thats all I can think of for now. Hope some of this

helps and I definately hope your pain ends soon. If you have any more

questions that I can help with feel free to ask.

Take Care,

Jerry

> Tomorrow I finally see the spine surgeon again. My situation is L4-

L5 bulging disc, facet joint problems and stenosis. Like one of you

posted I can walk few feet o.k., then it hits me and longer I am up

worse it gets, can hardly get anything done, hurts lying down too,

best position is semi reclined in a recliner. Two epidurals and 2

cortisone shots in area which I believe is bulgind disc. I tried the

physical therapy which was a waste of time. Dr had on order

prognosis good - dreamer!

>

> I have read a lot on net but not sure what I even wish for and

don't know what exactly to ask him. I am afraid he will put me off

and I need something done, there is no use just existing like this.

I wonder too, after a fusion can you bend enough to tie shoes, etc.

With knee, hip and shoulder replacements on that side I am somewhat

limited now.

>

> Also, did anyone have the microsurgery with laser and small

incisions, and how was recovery period from that. Glad to hear from

any of you through group or personally.

> Peggy

>

August 10, 2003

Peggy, let me know what they say tomorrow. Wonder if they will order more tests

like myelogram and EMG

Any suggestions?

Tomorrow I finally see the spine surgeon again. My situation is L4-L5 bulging

disc, facet joint problems and stenosis. Like one of you posted I can walk few

feet o.k., then it hits me and longer I am up worse it gets, can hardly get

anything done, hurts lying down too, best position is semi reclined in a

recliner. Two epidurals and 2 cortisone shots in area which I believe is

bulgind disc. I tried the physical therapy which was a waste of time. Dr had

on order prognosis good - dreamer!

I have read a lot on net but not sure what I even wish for and don't know what

exactly to ask him. I am afraid he will put me off and I need something done,

there is no use just existing like this. I wonder too, after a fusion can you

bend enough to tie shoes, etc. With knee, hip and shoulder replacements on that

side I am somewhat limited now.

Also, did anyone have the microsurgery with laser and small incisions, and how

was recovery period from that. Glad to hear from any of you through group or

personally.

Peggy

August 10, 2003

> Tomorrow I finally see the spine surgeon again. My situation is L4-L5

bulging disc, facet joint problems and stenosis. Like one of you posted I

can walk few feet o.k., then it hits me and longer I am up worse it gets,

can hardly get anything done, hurts lying down too, best position is semi

reclined in a recliner. Two epidurals and 2 cortisone shots in area which I

believe is bulgind disc. I tried the physical therapy which was a waste of

time. Dr had on order prognosis good - dreamer!

>

> Also, did anyone have the microsurgery with laser and small incisions, and

how was recovery period from that. Glad to hear from any of you through

group or personally.

> Peggy

>

Peggy -

The spine surgeon you speak of, is s/he an OSS or a Neurosurgeon? OSS

deals with the bones, and may not deal (or carefully consider) the nerves

intertwined in your spinal column.

Here's the scoop. Fusion is forever. It can't be undone if you have it

done. I wish I had know that before I let a surgeon touch my neck.

I had a non-fusion procedure done on my L3/4 and it worked out

better than the Neurosurgeon hoped.

I highly suggest that you get a second opinion from a NS in your area.

I really think that you should consider Minimally invasive surgery first.

There is a doctor in Pittsburgh, PA that is fairly well known around the

country. He is Dr. Jho and his website is www.drjho.com. He will

review your MRIs at no charge and tell you if he thinks his procedures

can help your case. If they can't, he'll be honest. Another good site

is www.microspine.com.

There is a new choice instead of fusion, called ADR, Artificial Disc

Replacement. While it is still in its infancy here in the US, FDA is in the

midst of approval and there are various clinical trials going on, countries

like Germany have been doing them for years and have even done 2-level

replacements (like L4/5 and L5/S1 together). I know someone who

went to Germany specifically to avoid fusion and got these levels replaced.

It's been a few months and he is doing fine.

So, my suggestion would be even though you are in pain, take a few weeks

to get some second opinions, look at MISS like an endoscopic discectomy,

and for goodness sakes, don't put all your bets on an OSS, let a NS

look at your case.

Joe

December 14, 2003

In a message dated 12/14/03 10:46:11 AM Eastern Standard Time,

atate526@... writes:

I'm starting to get frustrated, not at the fact that her speech is delayed as

much as I THINK THERE IS MORE! I think what brought me to where I am now is

her friend that is 5 mths younger repeats alot (when he wants to). This is

when I realized my suspicions werent crazy. There is something more and I want

help for it. Is there anybody out there that can tell me what your child is

saying at this age and how things are progressing............

I cant even begin to tell you what this little girl is doing..... She is

soooooo smart and her receptive is so unreal that if we could just get past this

" hump " to even get a diagnosis (she's getting speech in public preschool)

somewhere else and maybe get outside therapy so much more would come.

My daughter ( - 11) has apraxia. It wasn't apparent at first either -

she was verballing putting together 3 word sentences at 18 months. The older

she gets the more selectively mute she gets - I think she just finds it too

difficult to get out her ideas. I'm aggressively persuing getting her fluent on

a keyboard.

Unfortunately there isn't a lot of success with getting apraxia under control

(compared to stuttering, for example). 's younger brother has CAPD

(Central Auditory Processing Disorder) so I suspect has that too.

Keyboarding helped her brother a LOT (who is, by the way, qualified for the GT

program based on his IQ test results). Also Adderrall XR helped her brother, so

we've started that with as well.

- Becky

December 14, 2003

Hi Angie,

My Micah is 38 months and sounds like Abby. She has even more words

than he does though. His receptive language is phenomenal but he uses more

signing than speech. We have questioned the ST about Apraxia also and she said

she

has thought about it but doesn't think so. I also am worried about this and

Micah like Abby is doing really well in nursery school. We all feel that if

he could have more speech he would just explode in new ways. Maybe though

after hearing about Abby it isn't unusual. I keep telling myself that he is

going to do all these things at a slower rate and speech is one of them. I am

interested to see the responses you get because I too, have been frustrated and

concerned.

Loree

December 14, 2003

Hi Angie,

My Micah is 38 months and sounds like Abby. She has even more words

than he does though. His receptive language is phenomenal but he uses more

signing than speech. We have questioned the ST about Apraxia also and she said

she

has thought about it but doesn't think so. I also am worried about this and

Micah like Abby is doing really well in nursery school. We all feel that if

he could have more speech he would just explode in new ways. Maybe though

after hearing about Abby it isn't unusual. I keep telling myself that he is

going to do all these things at a slower rate and speech is one of them. I am

interested to see the responses you get because I too, have been frustrated and

concerned.

Loree

December 14, 2003

hi ANgie

have you visited Jim Macdonalds " communications " mailing list ? There are a

lot of good ideas going back and forth there, not only kids with DS, but

other speech delays as well. http://www.jamesdmacdonald.org

Gundula

December 14, 2003

hi ANgie

have you visited Jim Macdonalds " communications " mailing list ? There are a

lot of good ideas going back and forth there, not only kids with DS, but

other speech delays as well. http://www.jamesdmacdonald.org

Gundula

December 14, 2003

I tell ya she is saying staks more than BJ at that age. BJ is now just

turned 6 and has only really been talking for past 18 months or so.

Syndie is doing so well. BJ has always ha d a goods sign vocab, and can

say lots single words- but he also doesnt repeat too much- but by the

same token has usually been able to get his message across buy signs or

buy pulling on hands etc. BJ speaks reasonably clear;y, and each stage

of his school career he has gotten a tad betetr- like when he went form

daycare to staright kindy- he improved. When he went for kindy to school

( 6 months agao) again he improved. It is hard as you are the only one

who knows your kid

But if you feel there is something more, then have a bit of a push, but

iI personally wouldnt be overly worried about the speech yet. But I dont

know your child. YOU do.

Angie Tate wrote:

> Hey guys........I've had this on my mind for some time and hoped it

> would be figured out or get better. Sydnie is 3.5yr old with Down

> syndrome (just to let the apraxia group know) and I feel that her

> speech delay is more than the ds. Her speech therapist before

> starting school said she could really decide because it was so

> borderline as to whether Sydnie may have apraxia or not. Sydnie

> doesnt repeat alot. The words she does have are very clear, mama,

> da, ok, bye, hey (all spontanious), backpack (amagine that....if you

> say " say backpack " , the first time she heard us talking and said it),

> what, why, even " i want that or I dont want " , huh uh, pappaw (pretty

> clear when asked to say it)etc. She also uses signs for thank you,

> eat, drink (gink), boat, book, more, cracker, cookie, etc. But she

> doesnt name things when asked what is that? But receptively can show

> you anything when asked where is......

> I'm starting to get frustrated, not at the fact that her speech is

> delayed as much as I THINK THERE IS MORE! I think what brought me to

> where I am now is her friend that is 5 mths younger repeats alot (when

> he wants to). This is when I realized my suspicions werent crazy.

> There is something more and I want help for it. Is there anybody out

> there that can tell me what your child is saying at this age and how

> things are progressing............

> I cant even begin to tell you what this little girl is doing..... She

> is soooooo smart and her receptive is so unreal that if we could just

> get past this " hump " to even get a diagnosis (she's getting speech in

> public preschool) somewhere else and maybe get outside therapy so much

> more would come.

> Help me!

> ~Angie

> May God Bless You As He Has Us

> www.babiesonline.com/babies/s/sydniebrooke

> mom to Sydnie (3, Ds),

> Our second Baby Girl ~ EDD 4/30/04

> 3 angels in Heaven

>

December 14, 2003