New Member

[Guest guest]

Thank you Liz,

That is a great idea. I will call the number.

Liz Bohn <lbohn@...> wrote:

Dave,

One thought I had about getting your GF to call the counseling phone

line is to call it yourself from time to time and make reference to it.

Ie, " I called the counseling line and got some great advice. They told

me to blah blah.. " With my dh, that might work, but I don't know your

situation. No doubt about it, parenting AS kids is tough, and being in

the role of a step parent must be even harder. Kudos to her for

sticking with it!

Liz

On Jul 17, 2005, at 9:47 AM, davemarineveteran wrote:

> Hi my name is Dave and I am a new member to this group. I have full

> custody of my two children, Janell (9), and Trent (5). Their mom is

> active duty military and not involved. Both children have been DX

> with AS this past week. I knew there was something going on since

> they were less than a year. I always broke down instructions

> instinctively. So it kinda wasn't a surprise, although it is a

> relief to know. The problem is, I have been living with my

> girlfriend for over two years and she is a tremndious mom to my

> children. Though we have lots of fights because she would

> discipline the children and make them feel like it was there fault,

> while demoralizing them. I tried to explain to her that it wasn't

> there fault, but she would have none of that. She thought they were

> doing it maliciously (to the step mom). She has been reading on the

> AS and is finding out that it isn't the children's fault. But she

> still struggles with giving the children too much information. She

> has a phone number that the psychiatrist gave her that specializes

> in parent counsuling and coping with AS children, but she won't call

> it. How can I get her to call?

> Thank you everyone for all the posts; it's kind of a mutual

> consoling of sorts. I am glad I joined the group. I just wish I

> could get my girlfriend to begin reading these emails as well. I

> think she may be in denial.

> Thanks Again

> Dave

>

>

>

>

>

>

[Guest guest]

Hi Dave,

Since she is reading on AS, maybe you can find an article or book

that you think really applies to your two kids and have her read it.

There's so much info out there (books and on internet) and sometimes

what is read in one article/chapter, doesn't apply to " all " on the

autism/Aspergers spectrum.

I do know I've come across lots of things on breaking down

instructions, not giving too much info at a time, etc. When I have

time, I'll try to go back and see if I can find anything good that

might help and post it here.

Sometimes reading things on your own is better for some people than

hearing it from others. She might feel like she's being criticized

or something by talking to " experts " maybe, like she's not doing

things right, etc. So maybe reading about things is easier for her.

Just a thought there. I know when my son, now 16, was diagnosed back

around age 14, that I didn't totally agree 100% with what the

evaluators said I should do, as some things didn't quite fit his

needs, etc. While other suggestions they made were really good.

Anyway, reading something or getting suggestions from other parents

living with Aspergers is a huge help. And from reading here each

day, you can see that even the kids in this group vary as to their

strengths and weaknesses.

I will say, and try to be brief!, that my son up until middle school

could not even get the shower started for himself; trying to get the

right temp, which way to turn each handle (cold/hot) was actually

difficult for him. I'd get it started and leave the room. He even

had to always ask " which washcloth " he could use, etc., which shampoo

or whatever. I could give the same answer everynight, but it would

always get asked! He couldn't make his own sandwiches really; he

could try but it was sad to watch! Spreading mayo or whatever was

actually difficult for him, getting lunch meat out, etc. Found it

hard to read and follow instructions on things like microwave meals.

Sweeping a floor is hard. (Maybe some of this is motor skills; but

some is thought process) Don't say " clean your room. " You have to

break things down and tell them exactly what to do, one thing at a

time, maybe even where something goes, don't expect him to make his

own decision.... I could go on and on! But in high school these

past couple years, he has really improved, doing more for himself,

etc. On the other hand, this son has always been " gifted " for school

and makes straight A's! Being smart is something he is proud of and

he does well in school. Sometimes writing papers is hard for him,

the kind you are given a subject/topic and have to do. But he still

makes A's. And, of my 3 sons, luckily this one is also the one I

have NO behavior problems with. Can't say that for my other two!

However, many children with Aspergers and autism can show

behaviors/act out for different reasons (hate change, have trouble

transitioning, have to finish something before beginning another

task, don't understand what is expected of them to do, like things a

routine/set way...), and each AS person can vary in this way. I'm

lucky too in that my son does need to know what is expected, but

isn't required to have too much structure/daily routine as others

might need. (With our household, that's VERY lucky, LOL!)

OK, I was't too brief! I'm sure things will improve in your home, it

just won't happen overnight, but any progress IS progress and she is

learning about AS!

Keep us all updated on how things are going!

single mom, 3 sons

, 16, with OCD, dysgraphia and Aspergers

> Hi my name is Dave and I am a new member to this group. I have

full

> custody of my two children, Janell (9), and Trent (5). Their mom

is

> active duty military and not involved. Both children have been DX

> with AS this past week. I knew there was something going on since

[Guest guest]

Hi Dave, welcome!

It may be helpful to understand what is really holding

your girlfriend back from calling. There are many

reasons for this reluctance. Some have no clue what a

psychiatrist, psychologist, counselor really does, so

they use their imaginations and often think something

negative. They may fear that they will be reprimanded

and/or criticized; they may not fully believe in the

diagnosis; they may fear that this authority figure

will be intrusive and tell them what to do.

Emphasizing the positive is the key! To be a united

front as parents is what we all desire. Explaining

how important it is for you to have her participation

and willingness to attend these sessions (TOGETHER)

may be helpful too. Explaining to her that these

sessions will give her an opportunity to share her

thoughts and feelings about your children, and an

opportunity for her to ask questions...also may be

helpful. Meeting with a doctor is an opportunity to

learn about the diagnosis, options available to manage

the symptoms, and positive ways parents can manage

their child's behavior. Its meant to be informative

and educational, not critical. We all make mistakes

as a parent, no one is perfect. Raising a child(ren)

with Asperger's is a unique experience, and

understanding is very important. Complex issues can

and often do surface at home, in school, and out in

the community. If both of you are armed with the

tools to help your children succeed and adjust to the

challenges of life, life will be much easier for

everyone in your family.

Hope this is helpful,

--- davemarineveteran <davemarineveteran@...>

wrote:

> Hi my name is Dave and I am a new member to this

> group. I have full

> custody of my two children, Janell (9), and Trent

> (5). Their mom is

> active duty military and not involved. Both

> children have been DX

> with AS this past week. I knew there was something

> going on since

> they were less than a year. I always broke down

> instructions

> instinctively. So it kinda wasn't a surprise,

> although it is a

> relief to know. The problem is, I have been living

> with my

> girlfriend for over two years and she is a

> tremndious mom to my

> children. Though we have lots of fights because she

> would

> discipline the children and make them feel like it

> was there fault,

> while demoralizing them. I tried to explain to her

> that it wasn't

> there fault, but she would have none of that. She

> thought they were

> doing it maliciously (to the step mom). She has

> been reading on the

> AS and is finding out that it isn't the children's

> fault. But she

> still struggles with giving the children too much

> information. She

> has a phone number that the psychiatrist gave her

> that specializes

> in parent counsuling and coping with AS children,

> but she won't call

> it. How can I get her to call?

> Thank you everyone for all the posts; it's kind of a

> mutual

> consoling of sorts. I am glad I joined the group.

> I just wish I

> could get my girlfriend to begin reading these

> emails as well. I

> think she may be in denial.

> Thanks Again

> Dave

>

>

>

>

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

Welcome Dave...

You have your hands full...not only with your children, but with your gf as

well. Perhaps you could encourage her to read some of the posts from this

group...or you could make the phone call yourself and try to encourage her to

get involved. Do you have any books on AS yet? Or have you visited any

websites with info about AS? Try the OASIS site at

_www.udel.edu/bkirby/asperger_

(http://www.udel.edu/bkirby/asperger) or _www.tonyattwood.com_ (http://w

ww.tonyattwood.com) both of these are good places to start. Jump in to the

conversation anytime...I think you will find this to be a great place for info

and encouragement...looking forward to getting to know you and your

family...take care...

Blessings,

Gail

[Guest guest]

davemarineveteran <davemarineveteran@...> wrote:

Hi my name is Dave and I am a new member to this group. I have full

custody of my two children, Janell (9), and Trent (5). Their mom is

active duty military and not involved. Both children have been DX

with AS this past week. I knew there was something going on since

they were less than a year. I always broke down instructions

instinctively. So it kinda wasn't a surprise, although it is a

relief to know. The problem is, I have been living with my

girlfriend for over two years and she is a tremndious mom to my

children. Though we have lots of fights because she would

discipline the children and make them feel like it was there fault,

while demoralizing them. I tried to explain to her that it wasn't

there fault, but she would have none of that. She thought they were

doing it maliciously (to the step mom). She has been reading on the

AS and is finding out that it isn't the children's fault. But she

still struggles with giving the children too much information. She

has a phone number that the psychiatrist gave her that specializes

in parent counsuling and coping with AS children, but she won't call

it. How can I get her to call?

Thank you everyone for all the posts; it's kind of a mutual

consoling of sorts. I am glad I joined the group. I just wish I

could get my girlfriend to begin reading these emails as well. I

think she may be in denial.

Thanks Again

Dave

Hi Dave! I think I would probably keep pushing educational material at her.

Leave short articles for her to read or even print a post up now and then that

discusses something you are dealing with. Try to find a support group in your

area that you could both go to together. Ask the counselor if he knows of any.

And of course, keep telling her we would love to have her join in on this list

anytime she likes! She can read or contribute - whatever speed she wants to go.

One thing I tend to do to my dh, who doesn't like to get involved a lot in

support stuff, is talk about it. So at dinner, I might tell him, " On my list, a

lady said...and then this happened....and this person had a great idea... " He

can't escape, lol. And of course, we are a lovable group as well - how could

she not grow to love us? lol. Keep trying and don't give up!

Roxanna ô¿ô

Don't take life too seriously; No one gets out alive.

__________________________________________________

[Guest guest]

In a message dated 7/17/2005 7:26:23 A.M. Eastern Standard Time,

DeniceP234@... writes:

I follow

a really clean diet, no sugar, white flour or red meat and have

noticed a major reduction in my symptoms, but they are not completely

gone. If I have PA, I have it very mild compared to some of you, but

I want to know everything I can about the disease so that I can clean

up my diet even more, perhaps giving up the nightshade vegs. and

maybe even gluten.

Hi Denice, with regard to diet, I was originally diagnosed with celiac

disease (gluten intolerance) before PA. The diagnosis turned out to be

incorrect

but I ate gluten free and cut way back on my sugar for about a year and felt

much better. I haven't been good about keeping up with it, but you may want

to be tested for celiac...it's simple at first, they do a gliadin antibody

blood test, then if you are positive for that antibody, they send you for an

endoscopy (biopsy of the intestine), which is pretty similar to a colonoscopy

but starts at the other end:-)

I have also done a fair amount of research about the paleolithic diet

(mostly protein and veg, very little farmed products like grain, sugar, dairy);

there does appear to be some research that links autoimmune disease to a

" modern " diet; the basic gist is that our ancestors only learned to farm 500

generations ago, which is very short in terms of evolutionary time, and that

some of

us just haven't evolved enough to tolerate a diet so heavy in dairy, grain

and sugar. It's worth looking into if you are into diet as a means to help

control PA (assuming you get diagnosed with PA!) or any other autoimmune

disease.

[Editor's Note: Great comments as usual, . I was in my rheumy's waiting

room earlier today and was reading Arthritis Today. One of their articles said

that there have been NO scientific links between nightshades (tomatoes, bell

peppers, etc.) and arthritis. Hope this info helps. Kathy F.]

[Guest guest]

In a message dated 7/17/05 12:26:23 PM GMT Daylight Time, DeniceP234@...

writes:

If a person definitely had psoriasis

and definitely had arthritis, would they definitely have PA or could

you have say Psoriasis and some other type of arthritis? And is it

possible that the diagnosis I recieved years ago for eczema should

have really been for psoriasis? Sorry for all the questions, I should

probably just wait for the end of the month when I see the

dermatologist. At least then I'll know if I'm barking up the wrong

tree or not. Thanks for any input, Denice

Hi Denice,

Welcome to the group. It does kinda sound like you have come to the right

place. You should be able to get any questions you might have answered by

someone. Usually at least one of us will be able to identify with what you are

saying and its more likely that it will be most of us.

I was originally told that it was eczema when I first attended the doctor so

I would guess that's is not too unusual, especially a few years back. Also,

as far as I am aware, an odd person can have both PA and RA (When I say an

odd person, I don't mean the person is odd. lol)

Have you been referred to a Rheumatologist yet?

Take care,

[Guest guest]

In a message dated 7/4/05 3:26:02 AM GMT Daylight Time,

shellysmith4@... writes:

I thought I read somewhere on this site about chest pain and

with me just finding out I have PA I was just wonder right now if this

is what my daughter might have but in her chest instead of her hands

and feet. any info would be great. Thanks

Hi ,

Welcome to the group. I's sorry about you recent diagnosis but you have done

the right thing in joining us. There are plenty of people here who can give

you good info and advice based on their own experiences.

I have had problems with pain in my chest and ribcage in the past although

things have improved since I was started on Enbrel. I also had what I would

describe as a " clicking " behind my breast bone when I took a deep breath. The

professor I mentioned it to said that it could be Chostochondritis (I will be

amazed if that spelling is right! lol) That has eased off recently too. It

would be worth mentioning your daughter's chest pain to a specialist to see

what they say.

Good luck,

[Guest guest]

Welcome Dawn. So sorry for all you've been through especially at such

a young age. To have your doctor take away your pain medicine should

be illegal.

Is your arm problem Lymphedema? My friend had Lymphedema in her arm

after a mastectomy. She has to put a pressure cuff on her arm several

times during the day. It's no fun.

a

On Jul 28, 2005, at 2:15 AM, Dawn wrote:

> Hi,  I am Dawn 36 years old and no children, with exception to my fur

> babies. 

> I was diagnosed with fibromyalgia in 95 after slipping on ice and

> injuring my back, thru all the numerous test to rule out other

> medical issues that could be causing all the pain they discovered

> gall-stones and ultimately removed my gall bladder. 

> While my body was adjusting to the change I lost a tremendous amount

> of weight but ended up regaining it tenfold, a few years later I went

> thru a bout with rheumatic fever and a lumpectomy that left my right

> (dominant) arm messed up.  Prior to being diagnosed with fibromyalgia

> I had pain issues and had been tested for arthritis and lupus several

> times, lupus primarily because my mother has it. 

> My husband was supportive thru the back injury but when it never went

> away we started having problems.  I did eventually become employed

> again.  I had a very good doctor who at times would wait after the

> office was closed to give me cortizone injections and spinal

> manipulations while I was attending the police academy, I never would

> have made it thru the academy and stayed gainfully employed had it

> not been for him. 

> After the lumpectomy I lost my job with the police department, I

> wasn't able to lift my duty belt because of the arm issues and quite

> frankly it wasn't a safe situation to be in with a dominant arm

> nearly useless.  At any given moment I would drop an item I was

> holding and had no control over it.  Things got really bad between my

> husband and I, he was so often gone leaving me alone to deal with

> things and I suppose that was his way of dealing with things.  After

> he fractured my leg during one of our arguments I divorced him he is

> still around and helps out but nothing is the same and never will be

> again which saddens me because we use to be inseparable most of the

> time.

> I take daily Fluoxetine 60mg for depression, 300mg Ranitidine for the

> acid the other medication causes, 150mg Indomethacin for pain, 1800mb

> Gabapentin for pain, 25mg Hydrochlorothiazide for edema, 10mg

> Simvastatin for cholesterol, 200mg Trazodone for sleep, calcium and a

> daily vitamin.  I use to take Hydrocodone at night to reduce the pain

> so the Trazodone can work.  The new doctor at my clinic took the

> Hydrocodone away very recently stating she would discuss something

> over the counter such as Ibupropen before she will discuss giving me

> the hydrocone back and needless to say I am getting very little sleep

> am averaging around 6 hours of sleep per 3 days. Some days I get more

> just depends on the weather, my activities and emotional stress.  I

> tried to tell the inhumane WITCH that if ibuprophen worked I would be

> taking it.

>

> I don't like to take medications and for several years I tried to get

> by without it or very little of it.

>

> Well this is pretty long and I have probably put some of you to

> sleep, but hey thats a good thing isn't it?  LOL

>

> Hugz

> Dawn

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi a,

Thanks for the welcome. I am going to go back to my other Doctor to

remedy the problem with the pain meds.

As far as my arm I have biciphedus (sp?) tendonitus and problems with

the rotator cuff. They removed a suspicious lump from my right breast

and during the procedure over extended my arm. My doctor told me that

the arm is put into a device that they can basically ratchet the arm

out to pull tight the breast tissue for the procedure and he said that

it wasn't uncommon for people to have pain in the rotator cuff after

the procedure but my problems weren't normal. My hand and arm was

changing different colors, lots of swelling and severe shooting pain

from the sholder down and sometimes it radiated into the shoulder

blade area and I had no control over my hand at times. I could be

holding something and just drop it the most embarrasing moment was

when I was leaving a restaraunt and I dropped the full cup of soda I

was holding right at the door...LOL

I am not sure what Lymphedema is but I will pray for relief for your friend..

Hugz

Dawn

On 7/31/05, a <a54@...> wrote:

> Welcome Dawn. So sorry for all you've been through especially at such

> a young age. To have your doctor take away your pain medicine should

> be illegal.

> Is your arm problem Lymphedema? My friend had Lymphedema in her arm

> after a mastectomy. She has to put a pressure cuff on her arm several

> times during the day. It's no fun.

>

> a

[Guest guest]

How awful! It sounds brutal and barbaric. I can't believe there isn't

a better way to do the procedure without ripping your arm apart so

badly that it cost you your job as well as the debilitating pain.

Lymphedema occurs in breast cancer patients when surgeons remove lymph

nodes and vessels from the underarm. Removing lymph vessels and nodes

alters the way fluid drains and so the arm fills with fluid. I posted

an informative link to the group.

I'm glad you have another doctor that will help you with the pain meds.

I know what it's like to have a doctor not willing to prescribe.

I now have one that believes in prescribing pain meds.

a

On Jul 31, 2005, at 2:18 PM, Dawn Blevins wrote:

> Hi a,

> Thanks for the welcome.  I am going to go back to my other Doctor to

> remedy the problem with the pain meds.

>

> As far as my arm I have biciphedus (sp?) tendonitus and problems with

> the rotator cuff.  They removed a suspicious lump from my right breast

> and during the procedure over extended my arm.  My doctor told me that

> the arm is put into a device that they can basically ratchet the arm

> out to pull tight the breast tissue for the procedure and he said that

> it wasn't uncommon for people to have pain in the rotator cuff after

> the procedure but my problems weren't normal.  My hand and arm was

> changing different colors, lots of swelling and severe shooting pain

> from the sholder down and sometimes it radiated into the shoulder

> blade area and I had no control over my hand at times.  I could be

> holding something and just drop it the most embarrasing moment was

> when I was leaving a restaraunt and I dropped the full cup of soda I

> was holding right at the door...LOL

>

> I am not sure what Lymphedema is but I will pray for relief for your

> friend..

>

> Hugz

> Dawn

>

> On 7/31/05, a <a54@...> wrote:

> > Welcome Dawn.  So sorry for all you've been through especially at

> such

> > a young age.  To have your doctor take away your pain medicine

> should

> > be illegal.

> > Is your arm problem Lymphedema?  My friend had Lymphedema in her arm

> > after a mastectomy.  She has to put a pressure cuff on her arm

> several

> > times during the day.  It's no fun.

> >

> > a

>

>

>

[Guest guest]

Dear Dawn, welcome to the group, you are in the right

place for support. I am fairly new here myself and

these are very caring and supportive people Im sorry

about what happened between you and your husband, many

times I have seen one spouse back far away from the

other when they become ill, or have a long term

condition. It brings people's true character flaws out

I believe. Feel free to email me any time, I am a good

listener, and enjoy hearing from other people.

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

The problem with your friends arm sounds horrible and is something I

can relate to. When my ex fractured my leg it was the shin bone. He

threw a leaded crystal ashtray at me. The blow to that area caused

alot of damage to the tissue and veins and the fluid and blood had no

place to go except down. My foot was green, yellow, red and purple

and huge from all the fluid and blood that was more painful than the

fracture itself.

When this took place my husband and I had been argueing and he had

said to me that he couldn't stand to look at me or hear my voice, I

was holding the ashtray at the time and just dropped it at his

words...I guess it was just shock and hurt but he picked up the

ashtray and said " now look at the mess you made as if things weren't

bad enough around here " and he threw the ashtray at me.

Hugz

Dawn

On 7/31/05, a <a54@...> wrote:

> How awful! It sounds brutal and barbaric. I can't believe there isn't

> a better way to do the procedure without ripping your arm apart so

> badly that it cost you your job as well as the debilitating pain.

> Lymphedema occurs in breast cancer patients when surgeons remove lymph

> nodes and vessels from the underarm. Removing lymph vessels and nodes

> alters the way fluid drains and so the arm fills with fluid. I posted

> an informative link to the group.

> I'm glad you have another doctor that will help you with the pain meds.

> I know what it's like to have a doctor not willing to prescribe.

> I now have one that believes in prescribing pain meds.

>

> a

>

>

>

> On Jul 31, 2005, at 2:18 PM, Dawn Blevins wrote:

>

> > Hi a,

> > Thanks for the welcome. I am going to go back to my other Doctor to

> > remedy the problem with the pain meds.

> >

> > As far as my arm I have biciphedus (sp?) tendonitus and problems with

> > the rotator cuff. They removed a suspicious lump from my right breast

> > and during the procedure over extended my arm. My doctor told me that

> > the arm is put into a device that they can basically ratchet the arm

> > out to pull tight the breast tissue for the procedure and he said that

> > it wasn't uncommon for people to have pain in the rotator cuff after

> > the procedure but my problems weren't normal. My hand and arm was

> > changing different colors, lots of swelling and severe shooting pain

> > from the sholder down and sometimes it radiated into the shoulder

> > blade area and I had no control over my hand at times. I could be

> > holding something and just drop it the most embarrasing moment was

> > when I was leaving a restaraunt and I dropped the full cup of soda I

> > was holding right at the door...LOL

> >

> > I am not sure what Lymphedema is but I will pray for relief for your

> > friend..

> >

> > Hugz

> > Dawn

> >

> > On 7/31/05, a <a54@...> wrote:

> > > Welcome Dawn. So sorry for all you've been through especially at

> > such

> > > a young age. To have your doctor take away your pain medicine

> > should

> > > be illegal.

> > > Is your arm problem Lymphedema? My friend had Lymphedema in her arm

> > > after a mastectomy. She has to put a pressure cuff on her arm

> > several

> > > times during the day. It's no fun.

> > >

> > > a

> >

> >

> >

[Guest guest]

Thanks so much this means alot to me.

Hugz

Dawn

On 7/31/05, Davenport <jennay43334@...> wrote:

> Dear Dawn, welcome to the group, you are in the right

> place for support. I am fairly new here myself and

> these are very caring and supportive people Im sorry

> about what happened between you and your husband, many

> times I have seen one spouse back far away from the

> other when they become ill, or have a long term

> condition. It brings people's true character flaws out

> I believe. Feel free to email me any time, I am a good

> listener, and enjoy hearing from other people.

>

>

>

>

> ____________________________________________________

> Start your day with - make it your home page

> http://www./r/hs

>

>

>

>

>

>

[Guest guest]

Dawn,

I'm really sorry your husband did this to you. He is part of your past

that will always be painful memories.

I'm glad you divorced him. He didn't deserve you.

a

On Jul 31, 2005, at 4:11 PM, Dawn Blevins wrote:

> The problem with your friends arm sounds horrible and is something I

> can relate to.  When my ex fractured my leg it was the shin bone.  He

> threw a leaded crystal ashtray at me.  The blow to that area caused

> alot of damage to the tissue and veins and the fluid and blood had no

> place to go except down.  My foot was green, yellow, red and purple

> and huge from all the fluid and blood that was more painful than the

> fracture itself.

>

> When this took place my husband and I had been argueing and he had

> said to me that he couldn't stand to look at me or hear my voice, I

> was holding the ashtray at the time and just dropped it at his

> words...I guess it was just shock and hurt but he picked up the

> ashtray and said " now look at the mess you made as if things weren't

> bad enough around here " and he threw the ashtray at me.

>

> Hugz

> Dawn

[Guest guest]

Thanks a,

Hugz

On 7/31/05, a <a54@...> wrote:

> Dawn,

>

> I'm really sorry your husband did this to you. He is part of your past

> that will always be painful memories.

> I'm glad you divorced him. He didn't deserve you.

>

> a

>

>

>

>

> On Jul 31, 2005, at 4:11 PM, Dawn Blevins wrote:

>

> > The problem with your friends arm sounds horrible and is something I

> > can relate to. When my ex fractured my leg it was the shin bone. He

> > threw a leaded crystal ashtray at me. The blow to that area caused

> > alot of damage to the tissue and veins and the fluid and blood had no

> > place to go except down. My foot was green, yellow, red and purple

> > and huge from all the fluid and blood that was more painful than the

> > fracture itself.

> >

> > When this took place my husband and I had been argueing and he had

> > said to me that he couldn't stand to look at me or hear my voice, I

> > was holding the ashtray at the time and just dropped it at his

> > words...I guess it was just shock and hurt but he picked up the

> > ashtray and said " now look at the mess you made as if things weren't

> > bad enough around here " and he threw the ashtray at me.

> >

> > Hugz

> > Dawn

>

>

[Guest guest]

BIG {{{HUGS}}} Very trying indeed. So where are you going? What

type of band is it? Some providers have been known to use mole skin.

How much mole skin did they put in his band? Can you post some

pictures of your son in the band and out of it? I'm just wondering if

it's a fit issue or allergic/sensitive skin type reaction. It seems

very severe. Did they tell you to leave it off until his skin heals?

It sounds like what we would call skin break down. It usually doesn't

happen this quickly. It is also very rare. Please keep us posted.

If you can why don't you join us for chat at 10 PM EST. I should be

in there if this connection isn't slow as molasses!!!

mom to na (DOC Grad) and Kiersten (Preventative Repo)

www.thefilyaws.com

--- In Plagiocephaly , " lam_fam_2005 " <llamoureux@r...>

wrote:

> Hello all - I just joined this group after a very trying 24 hours.

> My

> son got a helmet on Friday. His flat spot is on the left side of his

> head. He really seemed to not even notice it was there - a little

> sweaty but overall he did so well. Slept 12 hours straight through

> the

> first night. He is super mellow anyway. Yesterday we took off the

> helmet to give him a bath and his face was raw and oozing along one

> side. Poor thing was laughing and playing all day - I don't think he

> even knew. They are going to line his helmet with moleskin and try

> that. I

> was already so worried that he was going to be hot as it is! Does

> anyone else have a special lining or had their child react in such a

> way? The people at his brace place said they had never seen a

> reaction

> like his.

> Thanks!

[Guest guest]

Hi,

Welcome to the group! I'm so sorry about what happened to your son.

I guess he has had his helmet off since yesterday? It sounds like

what is referred to as a skin breakdown. I'm going to yield to

helmet/band experienced parents at the group as far as providing you

appropriate advice, but I wanted to give you a quick reply of

support.

I have heard that a helmet usually needs to stay off until the skin

breakdown heals completely. It doesn't sound like merely a red spot

or irritated area from your description. How does the oozing area

look today? Did you perform skin checks every several hours or so the

first day of wear on Friday and Saturday? Did you notice any redness

in that area of his face earlier in the weekend? Does it seems that

that area became raw because the helmet was too tight there, or

shifted around too much and the friction caused the problem? Or does

it seem that the fit is fine, but that your son has skin that reacted

badly to the helmet?

What type of helmet is your son wearing, or where are you going to?

We may have someone here at the group with some insight into your

son's particular product.

I wish I could be of more help!

Christie (Mom to Repo'd Remy)

--- In Plagiocephaly , " lam_fam_2005 " <llamoureux@r...>

wrote:

> Hello all - I just joined this group after a very trying 24 hours.

> My

> son got a helmet on Friday. His flat spot is on the left side of his

> head. He really seemed to not even notice it was there - a little

> sweaty but overall he did so well. Slept 12 hours straight through

> the

> first night. He is super mellow anyway. Yesterday we took off the

> helmet to give him a bath and his face was raw and oozing along one

> side. Poor thing was laughing and playing all day - I don't think he

> even knew. They are going to line his helmet with moleskin and try

> that. I

> was already so worried that he was going to be hot as it is! Does

> anyone else have a special lining or had their child react in such a

> way? The people at his brace place said they had never seen a

> reaction

> like his.

> Thanks!

[Guest guest]

In a message dated 8/1/05 2:21:00 AM GMT Daylight Time,

daybreakfarm@... writes:

Started MTX last Thurs. 7.5mg. at 6:30 a.m. by 8:30 a.m I was feeling sick,

by 10:30 I was incoherent! I have never been so sick in my life. Every side

effect listed for MTX occurred, all on the first day! I was out of work for 7

days and really don't remember the first 3. DR says a very small % of people

have bad reactions. Great, just my luck!

So we will wait a few weeks for my system to settle down and then try Enbrel

on Aug 17th.

Hi Job,

Glad you could join us but sorry you had to. I think you have had enough on

your plate over the years without this lovely little disease deciding it

wanted a piece of you too.

Its strange how these drugs can help some people, probably most people but

it has such a bad effect on others. I really hope you have better luck with the

Enbrel. Let us know how you get on if you can.

Good luck,

[Guest guest]

Hi there

I also sympathise- that's really tough on your first day. Very

rarely I have heard of babies having a skin reaction like this- it's

hard to know what has caused your son's problems.

The first thing is to let it heal up though before the band is back

on. Once the skin has broken down, then it needs to heal as it is

basically an open sore- so ask your orthotist what they recommend,

or even your ped as there are creams such as antibiotic cream and

other that will speed healing, and also impregnated gauze patches

that can also be worn over a sore to help with this. I don't know

the brand names as I am in the UK, but a couple of people over here

have had sores and they definitely use products to help them heal

quickly.

So it will probably take a few days to let this heal up before you

can wear the band again.

As for what caused it, I think one of the things you probably should

have been told to do by your orthotist is to do regular skin checks

in the first couple of days. It's great that he slept so well in the

band, but after that long stretch he probably needed to be checked

early that morning and every couple of hours during the day.

Checking also airs the helmet and allows sweat to dry. But that is a

simple thing you can easily do next time once the band is back on.

The sweating can cause friction, as can a helmet where there is a

fit issue, so I would look into both of these options before

concluding it is an allergic reaction. The skin can really really

flare up badly and easily rub off if your baby has sensitive skin

(like mine did) just from heat rash and sweat. To stop this, I would

put your little one with the air/con turned up high (so you are

chilly). I bought a portable air/con unit as I just couldn't keep my

little girl from sweating, she never adjusted to the increased heat

and your little one may also be a sweatier child with sensitive skin

(just our luck!!!) Then dress him lightly, just a diaper or thin

cotton clothes. Check the band every couple of hours, wipe it out,

dry any sweaty hair and then put it back. Some bands you can use a

powder called Zeabsorb, but mine wasn't one of them- check with the

orthotist as this may also help. But keeping a sensitive skin/sweaty

child cool should be the first line of defence!

If there is a fit issue, which there may well be, then the sign

would be a deep red patch in one spot which doesn't go after an hour

with the band off. Obviously you can't see that now til the skin has

healed. The solution to this is that the orthotist must adjust the

band.

Finally, alcohol can irritate the skin as well, so use only a

minimal amount for cleaning once a day and let it dry for an hour

(at the start of the hour off) before replacing the helmet.

It may be that your little one did indeed have an allergic reaction

to the inside of the helmet, although this is very rare indeed. I

have to say most skin breakdown that I have heard of has been a

combination of getting way too hot, a child with sensitive skin plus

a fit issue that has just rubbed and caused a sore to open up. But

even if there is another issue, solving the heat and any fit issues

should be your first port of call- then you can see if this reaction

is due to something else. It will all help.

The good news is that your little one is super-chilled! It's not

upset him, though I'm guessing you are pretty upset. Secondly, it

will take a few days to get this healed up and a solution found, but

I'm sure it will get sorted. Hardly any babies actually can't get on

in a band. But don't let the orthotists encourage you to replace the

band til the patch is healing or healed- moleskin or no moleskin as

it will just open things up again. YOu may have to pretend that you

are starting a week later than anticipated

Do let us know how you get on

Hannah (mum to Lucia, London, UK)

Cranio grad

> > Hello all - I just joined this group after a very trying 24

hours.

> > My

> > son got a helmet on Friday. His flat spot is on the left side of

his

> > head. He really seemed to not even notice it was there - a

little

> > sweaty but overall he did so well. Slept 12 hours straight

through

> > the

> > first night. He is super mellow anyway. Yesterday we took off

the

> > helmet to give him a bath and his face was raw and oozing along

one

> > side. Poor thing was laughing and playing all day - I don't

think he

> > even knew. They are going to line his helmet with moleskin and

try

> > that. I

> > was already so worried that he was going to be hot as it is!

Does

> > anyone else have a special lining or had their child react in

such a

> > way? The people at his brace place said they had never seen a

> > reaction

> > like his.

> > Thanks!

[Guest guest]

Yikes!! That is horrible! How is it now? BTW, welcome to the group!

Natasha

Atlanta, GA

--- In Plagiocephaly , " lam_fam_2005 " <llamoureux@r...>

wrote:

> Hello all - I just joined this group after a very trying 24 hours.

> My

> son got a helmet on Friday. His flat spot is on the left side of his

> head. He really seemed to not even notice it was there - a little

> sweaty but overall he did so well. Slept 12 hours straight through

> the

> first night. He is super mellow anyway. Yesterday we took off the

> helmet to give him a bath and his face was raw and oozing along one

> side. Poor thing was laughing and playing all day - I don't think he

> even knew. They are going to line his helmet with moleskin and try

> that. I

> was already so worried that he was going to be hot as it is! Does

> anyone else have a special lining or had their child react in such a

> way? The people at his brace place said they had never seen a

> reaction

> like his.

> Thanks!

[Guest guest]

Penny,

Welcome. I have a 19 year old son with P.D.D. and A.S. and an 8 year old

daughter with A.D.H.D. O.D.D., and Depression. This is a good place to vent

and get support and advice.

Penny <smadaynnep@...> wrote:

Hi,

I am a new member - I just found this group by seeing the address on Jackie's

post about sensory products - Thanks Jackie :-)

I have an almost 9 year old son with ADHD and SPD - I also have a 6 year old

daughter who we are not 100% sure what her dx is. This past year her teacher

was convinced that she had oppositional defant disorder, I was leaning towards

Central Auditoy Processing Disorder with a parsody sub-type. BUT the child

therapist that I took her to felt that my daughter probably has Aspergers.

After reading Tony Atwood's book and the Oasis book I feel that my daughter

probably does have Aspergers and thus am on a quest to learn as much as I can.

I have discovered from being my son's Mom that I have learned more from other

Moms and their discussions on then I have learned from the medical

" experts " and or from other sources - so I am hoping that from this group I will

learn more about how best to help my daughter.

Penny

Penny --- smadaynnep@...

co-owner/moderator - ASD_Kids

co-owner/moderator - ADHD_DrugFree/

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

for Mobile

Take with you! Check email on your mobile phone.

[Guest guest]

I am sharing just my opinion. I know there are lots of alternatives for

chelation and many people will disagree with my thoughts. So that said we

are doing TD-DMPS and loving it! We have only been chelating for two months

now and my PDD-NOS 3yo is a different kid, really sometimes I think, who are

you! Minimal meltdowns (used to be nearly constant), speech like crazy and

nearly typical eye contact. My 5yo autistic son is making progress as well

but it is much slower. But he is using longer sentences, better at

describing, slightly better eye contact and a little less stemming. We are

very happy with the convenience of dosing (yet I know many feel it is too

high a dose too infrequently) but it makes the chelating realistic for our

very busy home. We have not run new labs since our base line but we will be

doing that next week. I am excited to see what is coming out cuz something

is! I know some on the list believe that TD-DMPS is ineffective but I just

keep looking at my kids and remembering the numbers Buttar reports in his

experience. 21 out of 31 kids recovered and all 31 making some progress,

can anyone else tout that?! I know many of you will disagree with this and

that is good, should know all of her options so she can decide what is

best for her kid.

Hope this helps

[ ] new member

My name is and I have a 3.6 year old diagnosed with PDD. We

have been doing biomedical for almost 2 years and making wonderful

progress. We are now interested in chelation. I heard that DMSA is

now in TD form and that it is the recommended form of chelation. My

son's hair analysis showed normal mercury (I know it must be bound

up...right?) and elevated aluminum. Would TD-DMSA be the best form of

chelation for him? I want to hear other experiences regarding

chelation both positive and negative. I feel like this is our next

direction. Any input is greatly appreciated.

GA

=======================================================

[Guest guest]

>>I want to hear other experiences regarding

> chelation both positive and negative. I feel like this is our next

> direction. Any input is greatly appreciated.

My four kids are fully chelated with ALA [oral]. At the end of

chelation, they tolerated all foods and no longer had gut yeast

issues. They also tolerated most supplements, and adding supplements

created more improvements.

So I would definitely recommend chelation, altho I have never used TD.

But ALA worked very well for my family.

http://www.danasview.net/chelate.htm

Dana

[Guest guest]

Welcome Bonnie,

Sorry for your diagnosis, but glad you found us. I know it's difficult

taking so many meds. We all hate it.

Were you on folic acid with the methotrexate? Is the Humira helping?

I take Enbrel & Mtx and naproxen. That gazelle looks very interesting.

I've thought about trying it.

My exercise is done in a pool, but I'm sure I could do the gazelle.

Nice to meet you.

a

On Aug 17, 2005, at 12:51 PM, bhudick wrote:

> Hi all - my name is Bonnie, from CT - and I was diagnosed one year ago

> with RA (my RF factor was 269) - and I'm now 37 years old.

>

> It's been a rough year - was on 1000mg of Naproxen for 9 months -

> which caused bad gastritis and acid reflux, tried Methotrexate - but

> got huge mouth ulcers.

>

> Now I'm on Humira (now weekly), plus plaquinel (it didn't work alone),

> plus they are starting me on sulfasalazine plus 5 mg of predinsone, 50

> mg zoloft and for the stomach I have to take 2 prevacid, 1 zantac 150

> and 4 carafate....I " M a walking drug store and I hate it!

>

> I gained 20 or so pounds this year - and I do work out for 15 mins 5

> days/week on the Tony Little's gazelle machine -

>

> I just needed to vent - it's so hard - thanks for listening!

>

> Bonnie

>

>

>

>

>

>

>