Re: at a loss

[Guest guest]

>

> My son (11 yr old, Aspergers) doesn't belong with behaviorally or

emotionally disturbed kids.� It would not be a good outcome if he was

placed with either, given his challenging communication skills.� I

don't know if that's what you're implying below, but if so, just

wanted to make that point.� High functioning kids with Aspergers and

not other significant diagnoses on top of it shouldn't be label

behaviorally or emotionally disturbed.�

> If that's not what you're trying to say, I apologize in advance

I don't mean it the way you are taking it. Technically, things like

anxiety disorders and clinical depression are considered emotional

disturbances. Of course, things like bi-polar are considered an

emotional disturbance. And the schools use ED and BD very generally.

To know how to place kids, they have to know whether that child tends

to be more aggressive towards other kids or more ends up being the

victim. If there are any teachers on the list, they can give a much

better explanation. I learned all this from an experienced SPED

teacher who works exclusively with bright ASD kids with multiple dx.

You would want an Asperger child with very poor/immature emotional

control in with the ED kids, not the BD kids, if they must be so

contained. Of course, I think we would all like our kids to be

inclusion/mainstreamed, if possible. But even in that case, they have

to careful who they put the child with. You don't want to put a

sensitive aspie in the class with all the kids on behavior plans for

aggressive behavior, who are there because that particular teacher is

good with them. This happened to my son one year!

Ruth

[Guest guest]

My 15 to son spent 2 years in a self-contained ED. He is bipolar & ADHD & was very aggressive, so this was the best place for him, especially since there were 8 students with 2 teachers & 2 paras. That gave him more attention. It would not have been fair to put him with more mildly impaired students because his behaviors would be disruptive to their learning. He also got more instruction in social skills than he would have in another setting. I am a special ed teacher & I would tell parents to look at class, the services, the student-teacher ratio, & not just at the "name" of the classroom. Of course, if your child's classification (diagnosis label) in order to be in the class then I would say NO WAY!!! Placement & services are supposed to be based on individual student needs, not their label.By the way my son is now in all general ed classes & doing well. He has one block everday with the resource teacher. Sent from my iPhoneBlessings, DonnaOn Jul 10, 2008, at 10:09 AM, "r_woman2" <me2ruth@...> wrote:

>

> My son (11 yr old, Aspergers) doesn't belong with behaviorally or

emotionally disturbed kids.� It would not be a good outcome if he was

placed with either, given his challenging communication skills.� I

don't know if that's what you're implying below, but if so, just

wanted to make that point.� High functioning kids with Aspergers and

not other significant diagnoses on top of it shouldn't be label

behaviorally or emotionally disturbed.�

> If that's not what you're trying to say, I apologize in advance

I don't mean it the way you are taking it. Technically, things like

anxiety disorders and clinical depression are considered emotional

disturbances. Of course, things like bi-polar are considered an

emotional disturbance. And the schools use ED and BD very generally.

To know how to place kids, they have to know whether that child tends

to be more aggressive towards other kids or more ends up being the

victim. If there are any teachers on the list, they can give a much

better explanation. I learned all this from an experienced SPED

teacher who works exclusively with bright ASD kids with multiple dx.

You would want an Asperger child with very poor/immature emotional

control in with the ED kids, not the BD kids, if they must be so

contained. Of course, I think we would all like our kids to be

inclusion/mainstreamed, if possible. But even in that case, they have

to careful who they put the child with. You don't want to put a

sensitive aspie in the class with all the kids on behavior plans for

aggressive behavior, who are there because that particular teacher is

good with them. This happened to my son one year!

Ruth

[Guest guest]

Gage will eat meats, vegetables except for spinich and broccoli and he loves fruits. But he will not touch jello, puddings or gravy. He wouldn't eat mashed potatoes until a couple of weeks ago when everyone else was eating them and he tried it and loved it. He eats whole grain bread and isn't too interested in cereals except if they have a prize in the box.

Sue

From: and Matt <lisa_leonard@ sbcglobal. net>Subject: ( ) At a loss Date: Tuesday, July 8, 2008, 9:40 PM

I guess I don't fit in this group now. My sons diagnoses were changed from AS/bipolar/ADHD to bipolar/ADHD/ ODD/moderate receptive language disorder/severe expressive language disorder. Now I am totally lost on what support group I should be on. This has been a very good group to belong to, very encouraging and willing to listen to the good and not so good. Thanks and take care!

No virus found in this incoming message.

Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.4.7/1544 - Release Date: 7/10/2008 7:37 AM

[Guest guest]

Gage is going into 1st grade and he will be in the learning resource room 90% of the day even though he is really intelligent, he can't focus and pay attention and needs the one-on-one to learn and it's constant repetition.

>> My son (11 yr old, Aspergers) doesn't belong with behaviorally oremotionally disturbed kids.� It would not be a good outcome if he wasplaced with either, given his challenging communication skills.� Idon't know if that's what you're implying below, but if so, justwanted to make that point.� High functioning kids with Aspergers andnot other significant diagnoses on top of it shouldn't be labelbehaviorally or emotionally disturbed.�> If that's not what you're trying to say, I apologize in advance I don't mean it the way you are taking it. Technically, things likeanxiety disorders and clinical depression are considered emotionaldisturbances. Of course, things like bi-polar are considered

anemotional disturbance. And the schools use ED and BD very generally.To know how to place kids, they have to know whether that child tendsto be more aggressive towards other kids or more ends up being thevictim. If there are any teachers on the list, they can give a muchbetter explanation. I learned all this from an experienced SPEDteacher who works exclusively with bright ASD kids with multiple dx. You would want an Asperger child with very poor/immature emotionalcontrol in with the ED kids, not the BD kids, if they must be socontained. Of course, I think we would all like our kids to beinclusion/mainstrea med, if possible. But even in that case, they haveto careful who they put the child with. You don't want to put asensitive aspie in the class with all the kids on behavior plans foraggressive behavior, who are there because that particular teacher isgood with them. This happened to my son one

year!Ruth

[Guest guest]

i am no expert ....I just read some things about eating habits and my son's TSS brought up the white food issue...soft foods....I think our kids may not have all the same issues with food but it does seem to be that most have some sort of issue....interesting.

Janice Rushen

Mom, Mentor, Wife, Teacher, Advocate, Accountant,

Maid, Taxi, Shopper, Bulletin Board Artist

Nanny, Crafter, Therapist, Friend, Sister, Aunt,

Daughter, Grand-daughter, Personal Care Aide,

Student, Believer, and Giver.

From: and Matt <lisa_leonard@ sbcglobal. net>Subject: ( ) At a loss Date: Tuesday, July 8, 2008, 9:40 PM

I guess I don't fit in this group now. My sons diagnoses were changed from AS/bipolar/ADHD to bipolar/ADHD/ ODD/moderate receptive language disorder/severe expressive language disorder. Now I am totally lost on what support group I should be on. This has been a very good group to belong to, very encouraging and willing to listen to the good and not so good. Thanks and take care!

[Guest guest]

>

> As a child my son ate only certain foods, e.g., wieners, hamburgers,

chicken

> fingers, fries, mac & cheese, rice, pizza, among other things. He

would not

> eat roast, steak, ham, chicken, fish, most vegetables and fruits. Now,

> there are very few foods he won't eat!

>

>

>

>

>

>

, you're giving me hope! My skinny little boy is sooooo picky

and limited in his diet. But yesterday he ate a whole nectarine!!! I

was so happy, I didn't even care that he made me slice it up so he

could eat it with a fork. He would hate to get juice on his hands.

[Guest guest]

,

I'm curious what tests the psychiatrist used. Our psychologist used

the Childhood Autism Rating Scale (CARS), the Vineland and I think the

ADOS test, then basically averaged them out. First we saw a

psychiatrist and I don't know what test he used. You could ask future

specialists what tests they use and compare the answers. You can

google these for more info.

> From: and Matt <lisa_leonard@ sbcglobal. net>

> Subject: ( ) At a loss

>

> Date: Tuesday, July 8, 2008, 9:40 PM

> I guess I don't fit in this group now. My sons diagnoses were

changed from AS/bipolar/ADHD to bipolar/ADHD/ ODD/moderate receptive

language disorder/severe expressive language disorder. Now I am

totally lost on what support group I should be on. This has been a

very good group to belong to, very encouraging and willing to listen

to the good and not so good. Thanks and take care!

>                                                     

>

[Guest guest]

I'm sure the psychiatrist told me what tests were used but I can't remember. I have all of the paperwork so I'll be able to see if it's in there. If not I will definitely ask at the next appt. My son is supposed to start on concerta today. I don't know if I will be able to get him to swallow it or not. He has only taken one pill in his entire life and that didn't work out well. It ended up partially dissolving on his tongue as he tried to figure out how to swallow it. His other medicine is sprinkles and I assumed this would be too until I opened the bottle.

( ) At a loss> > Date: Tuesday, July 8, 2008, 9:40 PM> I guess I don't fit in this group now. My sons diagnoses werechanged from AS/bipolar/ADHD to bipolar/ADHD/ ODD/moderate receptivelanguage disorder/severe expressive language disorder. Now I amtotally lost on what support group I should be on. This has been avery good group to belong to, very encouraging and willing to listento the good and not so good. Thanks and take care!>

>

[Guest guest]

I agree with all the others. Don't leave. This is a great group. I've even gotten great advice regarding my NT son.

Mims

From: Bobbie <riveryak2003>Subject: Re: ( ) At a loss Date: Wednesday, July 9, 2008, 12:15 PM

They do overlap. My son thinks he has heaps of friends...not really...but he tries to be social and involved. He does not flap, intellectually he is extremely gifted. He will tell you more then you need to know (or mare than he really knows) about numerous things. None that anyone cares about, except him. His intelligence is way beyond his years, his social skills are way behind.I had a neuropsych tell me," of course is is AS, why would anyone question it? My son was on meds ofr ADHD for almost two years, he has been off since May and emotionally much more stable. I still read the ADHD boards for insight and ideas. bobbie in NJ

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[Guest guest]

Thank you very much. We took our son to the Y for the first time today so he could start getting familiar with it so he could start swimming lessons this fall. I had to carry him out kicking and screaming after about 15 minutes. I sure hope next time goes better.

Re: ( ) At a loss Date: Wednesday, July 9, 2008, 12:15 PM

They do overlap. My son thinks he has heaps of friends...not really...but he tries to be social and involved. He does not flap, intellectually he is extremely gifted. He will tell you more then you need to know (or mare than he really knows) about numerous things. None that anyone cares about, except him. His intelligence is way beyond his years, his social skills are way behind.I had a neuropsych tell me," of course is is AS, why would anyone question it? My son was on meds ofr ADHD for almost two years, he has been off since May and emotionally much more stable. I still read the ADHD boards for insight and ideas. bobbie in NJ

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[Guest guest]

My 11 year old is also extremely picky and he is a big boy. He is even very rigid about what he eats where (will only eat certain things at home and no where else). PamGet the scoop on last night's hottest shows and the live music scene in your area - Check out TourTracker.com!

[Guest guest]

I am so sorry that this continues to be an issue for you. I think

that it's great that you are asking the group to see if anyone has

thoughts, I would do the same. I would probably just gather as much

info as possible. Here are some questions, ignore if not helpful.

Have you gotten input on this from the pediatrician? I liked the

one's mom's opinion of being referred to a dermitologist. It sounds

like the 'pressure' is causing this, but if not certain, would

putting some sort of barrior in help or would it be an option--that's

probably a question for the ortho. Just wondering if the thin

handkerchief or something would soak the sweat and protect from the

plastic or foam. Might not be ideal, but probably better than not

wearing the helmet. Could you maybe call a CT just to ask for their

advice? They may not be an option for you because of location, but

they may have experienced this type or reaction. I'm not as familiar

with the other bands, but since various orthos/clinics do the band,

is there a product line that you can call to ask about why this

reaction is occuring and if they have had something similar and what

they recommend to do about it--maybe they have specialists on staff.

I would very clearly tell them that you continue to have this prob

yet your ortho tells you to keep putting the band on and that you are

not seeing results due to having to take it off so much.

I don't think you are subjecting your son to torture, they just don't

understand. You are trying everything that you can to round out your

LO's head while also trying to maintain his health. Keep searching.

H.

>

> Well everyone. I could use some input here. Jayden is having some

bad

> bad luck with his Hanger helmet. At first they thought he was

> allergic to the foam padding in the first one so they made a second

> one. The second one irritated him more than the first cause the

foam

> in the second was more plasic like and really held the

sweat " fresh "

> so to speak all day. I mean the first one he would sweat but he

would

> not be dripping in sweat when I took it off, but the second, the

> sweat was just wet wet dripping wet all day. So the first one made

> him break out in blisters/boils which was cultured and turned out

to

> be a staph infection which is ped said was caused by pressure

points

> in the helmet cause had it been a normal staph, it would have been

> everywhere on his body not just on his head. So thats when we got

the

> second helmet. Well...now the second helmet is causing those

blisters

> and boils too. So much that I take it off more often than I should

> hence the darn thing has probably not been effective. I mean

> literally this weekend we went on a two hour road trip with the

> helmet on. When I took it off to wash it my son had blisters/boils

> starting to form and under the blisters it was like big knots

bulges

> under. I just simply do not understand. His orthotist has not heard

> of this, and honestly I have looked and looked but cant seem to

find

> anything either. His ortho even opened the openening bigger at our

> last appointment to hopefully help the sweat issue. I'm not sure if

> its just the nasty sweat causing this or what. I mean, obviously

this

> isnt something that can be adjusted, and I'm not so sure that its a

> bad orthotist thing. Colorado is also not a band friendly state so

> even IF I thought of getting a second opinion, I havent been able

to

> find any other doctors that do this. PLUS, there is not CT out here

> or any place that would offer the DOC band. I think its the closed

in

> area of the Hanger helmet(which actually is pretty much the exact

> same thing as the Starband and even orthoamerica has confirmed this

> with me) Im just at a loss. Even though his ortho says he has grown

> in length I just dont see how. He hasnt even gone a full month

> wearing it 23 hours a day yet! She says she wants him to be done by

> Xmas, but honestly...to me...his head looks exacly the same. FLAT

> FLAT FLAT and WIDE!!!!!!! Everyone talks meanly to me because

> I'm " subjecting " my son to " torture " with those blisters/boils. How

> is my son the only child that may never be able to wear one of

these

> bands I just do not understand. if you were me what would you do?

Try

> to wear the helmet as prescribed and see what happens? Or just toss

> in the towel at this point? I'm just not sure switching doctors

would

> even do anything as the bands offered in colorado are so similar.

And

> I do like our ortho, I dont think this is something she can even

help

> with, and I'm sure she feels just as helpless as I do.

>

[Guest guest]

One recommendation that is suggested by some Orthotists, is to apply

a light dusting of a corn starch based powder, such as " Gold Bond

Corn Starch Plus Baby Powder " to your infants head befor applying the

helmet. Also take short breaks from the helmet every 2-3 hours and

reapply starch as needed. Also check with your Orthotist to make sure

there is an adequate amount of ventilation holes drilled through the

helmet. Typically, 1/4 " ventilation holes spaced about 1 " apart will

help and will have no negative impact on the effectiveness or

integrity of the helmet, if done properly. Also be sure to clean the

inside of the helmet periodically. You can use a clean cloth with a

little rubbing alcohol to wipe and clean the inside of the helmet and

let it sit out to thoroughly dry before putting it on again. Check

with your Orthotist on these suggestions first, if they have not been

tried already.

>

> Well everyone. I could use some input here. Jayden is having some

bad

> bad luck with his Hanger helmet. At first they thought he was

> allergic to the foam padding in the first one so they made a second

> one. The second one irritated him more than the first cause the

foam

> in the second was more plasic like and really held the

sweat " fresh "

> so to speak all day. I mean the first one he would sweat but he

would

> not be dripping in sweat when I took it off, but the second, the

> sweat was just wet wet dripping wet all day. So the first one made

> him break out in blisters/boils which was cultured and turned out

to

> be a staph infection which is ped said was caused by pressure

points

> in the helmet cause had it been a normal staph, it would have been

> everywhere on his body not just on his head. So thats when we got

the

> second helmet. Well...now the second helmet is causing those

blisters

> and boils too. So much that I take it off more often than I should

> hence the darn thing has probably not been effective. I mean

> literally this weekend we went on a two hour road trip with the

> helmet on. When I took it off to wash it my son had blisters/boils

> starting to form and under the blisters it was like big knots

bulges

> under. I just simply do not understand. His orthotist has not heard

> of this, and honestly I have looked and looked but cant seem to

find

> anything either. His ortho even opened the openening bigger at our

> last appointment to hopefully help the sweat issue. I'm not sure if

> its just the nasty sweat causing this or what. I mean, obviously

this

> isnt something that can be adjusted, and I'm not so sure that its a

> bad orthotist thing. Colorado is also not a band friendly state so

> even IF I thought of getting a second opinion, I havent been able

to

> find any other doctors that do this. PLUS, there is not CT out here

> or any place that would offer the DOC band. I think its the closed

in

> area of the Hanger helmet(which actually is pretty much the exact

> same thing as the Starband and even orthoamerica has confirmed this

> with me) Im just at a loss. Even though his ortho says he has grown

> in length I just dont see how. He hasnt even gone a full month

> wearing it 23 hours a day yet! She says she wants him to be done by

> Xmas, but honestly...to me...his head looks exacly the same. FLAT

> FLAT FLAT and WIDE!!!!!!! Everyone talks meanly to me because

> I'm " subjecting " my son to " torture " with those blisters/boils. How

> is my son the only child that may never be able to wear one of

these

> bands I just do not understand. if you were me what would you do?

Try

> to wear the helmet as prescribed and see what happens? Or just toss

> in the towel at this point? I'm just not sure switching doctors

would

> even do anything as the bands offered in colorado are so similar.

And

> I do like our ortho, I dont think this is something she can even

help

> with, and I'm sure she feels just as helpless as I do.

>

[Guest guest]

Antonia,

My son's first helmet was a Hanger helmet. He did fine for the first

week during the break-in period. At the first adjustment

appointment, they added a piece of foam to try to stop some

rotation. He did OK for the fist week after that, we then had

continuous problems with blisters and broken skin that turned out to

be due to heat rash. The blisters and broken skin were all along the

prominent side that was rubbing against the helmet. I could send you

pictures for comparison if that would help. Initially the orthotist

didn't know what the problem was. They tried several things to help -

they shaved out more foam in the prominent area and they drilled

ventilation holes in the back of the helmet. We continued to have

problems for several weeks. Unfortunately, my son's helmet never fit

right after the first few adjustments. When Hanger decided we were

done there was a great deal of improvement in his headshape despite

the problems with the fit of the helmet the entire time he had it. I

felt he could have had much more improvement with a band that fit

well and eventually we ended up getting another band from CT, which I

know you said was not an option based on your location.

One thing that I learned when we got our band from CT, that would

have helped with the first helmet, was that if they sweat alot it's a

good idea to take the helmet off every few hours or so during the day

and wipe it and the child's head down to dry them off and then put

the helmet back on - at least for the first few weeks. This helps

prevent heat rash and helps prevent skin breakdown due to rubbing of

the wet helmet against their wet head. I found this really helped

when we got our band from CT. I think if I had know this when we got

our Hanger helmet we could have avoided most of the blistering/skin

breakdown issues that we had.

>

> Well everyone. I could use some input here. Jayden is having some

bad

> bad luck with his Hanger helmet. At first they thought he was

> allergic to the foam padding in the first one so they made a second

> one. The second one irritated him more than the first cause the

foam

> in the second was more plasic like and really held the

sweat " fresh "

> so to speak all day. I mean the first one he would sweat but he

would

> not be dripping in sweat when I took it off, but the second, the

> sweat was just wet wet dripping wet all day. So the first one made

> him break out in blisters/boils which was cultured and turned out

to

> be a staph infection which is ped said was caused by pressure

points

> in the helmet cause had it been a normal staph, it would have been

> everywhere on his body not just on his head. So thats when we got

the

> second helmet. Well...now the second helmet is causing those

blisters

> and boils too. So much that I take it off more often than I should

> hence the darn thing has probably not been effective. I mean

> literally this weekend we went on a two hour road trip with the

> helmet on. When I took it off to wash it my son had blisters/boils

> starting to form and under the blisters it was like big knots

bulges

> under. I just simply do not understand. His orthotist has not heard

> of this, and honestly I have looked and looked but cant seem to

find

> anything either. His ortho even opened the openening bigger at our

> last appointment to hopefully help the sweat issue. I'm not sure if

> its just the nasty sweat causing this or what. I mean, obviously

this

> isnt something that can be adjusted, and I'm not so sure that its a

> bad orthotist thing. Colorado is also not a band friendly state so

> even IF I thought of getting a second opinion, I havent been able

to

> find any other doctors that do this. PLUS, there is not CT out here

> or any place that would offer the DOC band. I think its the closed

in

> area of the Hanger helmet(which actually is pretty much the exact

> same thing as the Starband and even orthoamerica has confirmed this

> with me) Im just at a loss. Even though his ortho says he has grown

> in length I just dont see how. He hasnt even gone a full month

> wearing it 23 hours a day yet! She says she wants him to be done by

> Xmas, but honestly...to me...his head looks exacly the same. FLAT

> FLAT FLAT and WIDE!!!!!!! Everyone talks meanly to me because

> I'm " subjecting " my son to " torture " with those blisters/boils. How

> is my son the only child that may never be able to wear one of

these

> bands I just do not understand. if you were me what would you do?

Try

> to wear the helmet as prescribed and see what happens? Or just toss

> in the towel at this point? I'm just not sure switching doctors

would

> even do anything as the bands offered in colorado are so similar.

And

> I do like our ortho, I dont think this is something she can even

help

> with, and I'm sure she feels just as helpless as I do.

>

[Guest guest]

If you still have a copy of the original letter you sent to your

doctor, then send it again, only this time, highlighting your where you requested

these specific blood tests to be done, and asking the doctor to explain (in

writing) the reason s/he refused to ask for this. Tell him/her that you

specifically requested these tests because research has shown that if any of

them are low in the reference range, no amount of thyroid hormone replacement

(not even your own) can get properly utilised in the cells. Ask that s/he also

sends you the last results of your thyroid function tests together with the

reference range for each of these. Please put this in writing, send a copy of

this second request to the Head of Practice too and make sure your GP sees that

you have done this. Keep a copy yourself and ask for your letter to be placed

into your medical notes. Tell the doctor that you would like a response within

7 working days which is reasonable.

We just cannot allow doctors to get away with this. It is their

DUTY to work WITH their patients and not against them.

Luv - Sheila

I am really at a loss with my doctors and I

really think it beggers belief that after my recent visit, putting things in

writting for them as to what blood tests I would like done ie Ferritin, vitamin

B12, vitamin D3, magnesium, folate, copper and zinc

I would like my last thyroid function test results and the reference range

Free 4, free 3, TSH, thyroid antibodies

I have just been down to pick up my results after waiting 10 days for the

results, Non of the above have been tested ! I just have a result for serum

cortisol 298nmol/L Ref am:198-720 pm:85-460

I am not sure about cortisol levels and what they should be , does anyone know

what the ideals are please.

Thank you