What should I do?

[Guest guest]

Hi ?

I'm 36 and have had PA since I was 30. I'm in the middle of a flare at

present, fortunately I'm not really sore in the hands and feet (like I

normally am) however I am experiencing extreme tiredness, aching all over,

running a temperature and getting everything in sight. But that's me and it

doesn't always happen that way..... What you can expect with PA is really

rather an individual thing, though there are some similar symptoms. From

what I can see and read it mostly affects the hands and feet, though it does

vary, psoriasis of the skin and general arthritic aches. For 5% of

sufferers you can get what they call 'sticky digit's inflamed toes and

fingers where the nail bed degenerates from the inflammation.......

Don't get worried though as some people can have it for a time and then go

into remission. My friend Cheryl developed it at 15 and then it seem to

disappear at 30....you just never know.

You might have to change your life style a little....listen to your body

more.....especially when it's telling you to slow down.

I take methotrexate, but I'm also trying a diet at present. Funnily this

seems to be helping as for the first time in ages I have had a week where I

haven't felt fatigued.....if only I could stick to the diet!!!

As for the future and having a baby - I don't see why not. I have had

friends with PA who have had babies and if anything the symptoms completely

disappeared during the pregnancy. The only issue will be careful attention

to avoiding certain medications before and during the pregnancy.

All I can say is that emailing this group has been really helpful - there is

nothing like talking (emailing) with someone who understands and doesn't

think your a hypochondriac.

Good luck and keep in touch with the group - they are really supportive.

Regards,

Kate Steinfort

[Guest guest]

Hi there,

Okay, sit down, take a deep breath and let it out. What do we know, we know that

you have PA...we know that it will progress but at what rate we don't know. But

the question is...how bad do you want a baby? What drugs are you on and what

does your doctor say? You will have to get all the doctors in on the decision.

Do you have other children? There are many on the list with children and they

can tell you better how they are doing with the raising of them. I am 54 years

old and my kids are grown and on their own... At the end of the boys years in

high school climbing bleachers became a challenge. I didn't miss a game, I

didn't miss a band concert, I was there when our son won the State competition

in powerlifting in his division. I have traveled to many states to watch him

power lift and he is now olympic lifting...hey you can do a lot if you want to

and can suck it up on the pain. I would and still do allow my body to tell me

when it's had enough...but I found that if I wanted to watch my kids in their

activities I had to learn to work my schedules on the days of competition so I

wasn't beat before the activity. I reserved my strength during the day so I

could be there. You just learn what you have to do to get to do the things you

want to do.

Besides you didn't give us much to go on here...how bad are you with PA...Don't

sit there thinking gloom and doom when you just might be fine to have a child.

You will find staying on the positive side of things helps to get you through.

Let's face it, having PA and PS isn't like having the dreaded Cancer with only a

few months to live. So think on the bright side...You are alive, fairly healthy

and can still move. As long as we can move...and do basically what we want to,

with a little adjustment to our life styles, then life can go on as we sort of

want it to.

With all of us in the group...you're not alone with the pain or depression, the

fatigue. We are all there or have been there. But don't stay negetive...try to

see the upside...they may find a real cure for PA in the near future. I can't

wait...

Donna

[Guest guest]

,

I got interested in gallbladder/liver flushes when reading Dr. Hulda

's

book " The Cure for all Diseases " . My Brother in Law had done several

flushes after he started having gall bladder problems and his

galbladder

lost the race against time. He couldn't get his attacks cleared up

before

he felt compelled to have his gall bladder removed. Up until I read

Dr.

's book it never dawned on me to do a flush myself, after all I

wasn't

having gall bladder attacks. I'm 43 years old and don't ever want to

let my

gall bladder get so full of stones that are so big that I start

having

attacks. I've now done 2 flushes and so has my wife. We plan to

keep doing

them until we quit getting stones out. She was much impressed by the

size

of the stones she got out on the first flush. We both have gotten a

total

500-600 stones apeice in 2 flushes. I am much impressed by the

immediate

health benefits that both of us have seen. My allergies are

completely

gone. She is in the best, most even tempered mood that she's been in

since

I met her 20 years ago. Her appetite has improved which it needed

to. Mine

has subsided some which it needed to. Neither one of us was " sick "

or under

a doctor's care when we decided to do our flushes. We're just trying

to

stay that way. No one can make your decision for you, but my

recommendation

is to start your flushing according to the tried and proven methods

discussed here on this list; and save your gall bladder, your money,

and

your health in the process. Waiting until the pain is more frequent

and

more severe makes surgery more tempting. You are more fortunate than

many

who have had or now have much more severe gall bladder problems

before they

looked into flushing.

Here's a quote from Dr. 's book " The Cure for all Diseases " if

it will

help ease your mind any:

" You may feel a train of stones traveling along the bile ducts like

marbles.

There is no pain because the bile duct valves are open (thnak you

Epsom

salts!) "

Dr. 's flush uses Epsom salt mixed with water to open the bile

ducts

wide. A few hours later you take the Olive oil and Grapefruit juice

mixture

to cause bile pressure to force the stones out through the open bile

ducts.

There's more to the flush, but the point is that what you've been

doing with

just the oil is not the same as you would do with a flush. By taking

only

oil, the pressure from the increased bile flow is pushing against

solidly

lodged stones. This causes pain and discomfort. The epsom salts in

the

flush loosens and dislodges the stones first before the oil is

taken.

I'm still learning myself. Flushing is fairly new to me, but it's

helped a

lot already.

Best regards,

Vince Richter

[Guest guest]

Big thanks to everyone!

I think what I am going to do is he got it today so now I will give it

to him again on Sat. And try to get back on track the following week.

Again thanks, This has been a real whopper of a week. I think I will

go out and get some hair color for myself, after this week I am sure there are

a lot more white hairs.

Janis

</HTML>

[Guest guest]

Hi Janis

I give my two boys shots on Thursday and Monday. If I can't give the

shot for any reason (which might happen for eg. because the child is

very restless and miserable due to a cold and I think it will wake

and upset them) I just give it the next night then every third night

until I can get back to the Thursday, Monday routine. Kind regards,

Alison

>

> Hello,

>

> What should I do, I missed my son's Mb12 shot on Wed. due to his

massive

> Melt down. Should I give it to him tonight or just skip it? I was

giving him a

> his shots on Monday, Wednesday and Saturday.

>

> Has this every happened to anyone?

>

>

> Thank you

>

> Janis

>

>

> </HTML>

>

>

>

[Guest guest]

I would send an email to him. Nicely. Explain who you are......and that you want him to be aware of what happened last night. I'd also CC it to the special ed dept (or maybe write them a separate letter and attach the ltr you're sending to the band teacher). That way,,,,they know what happened and can maybe recommend some training for ALL teachers...as it should be. We also had issues with my sons' band teacher. Horrible. He was never required to attend any "training" on different issues (most gym, music, art teachers aren't).......so he was fricken clueless. When he was "told" about my sons' issues by the districts' autism consultant, sp ed teacher, middle school principal and myself,,,,,,he was unapologetic about the comments he made (denied telling my son to "shut up" and that he told him, "the band is better off without you"....even though 3 other kids heard him as

well).................... Just said that he was glad he now knew and said that he wanted help in the class to deal with Ian. So,,,they sent him with an aide to just sit in back and "curb" the ADD/noises he would sometimes make. But,,,,,the fricken damage was done. So,,,,sorry I "regressed".....hee hee. I'd definitely let him know, though. He may not care.....but you will, if you don't say anything. Good luck to you!! Robin "Normal is just a cycle on a washing machine"tracyrunner <tracyrunner@...> wrote: I don't post much, but I'm in a quandry as to how to handle a situation that happened at my son's sting concert tonight. He has aspergers, add and a very bad motor tic. His motor tic gets worse when fatiqued and/or stressed (and is something he is very sensitive about). This concert involved a few schools in the pyramid so some of the teachers were unfamiliar with him. After the concert, instead of promptly putting his viola away he dashed off to get refreshments (this was after sitting in a chair for 1.75 hours), leaving the viola in a high traffic area where it could have been damaged. A strings teacher from another school picked it up and when Sam went to retreive it, this teacher began severly chastizing him for leaving his instrument unattended. Ok I was about to do the same.Sam is just looking at him

and "ticing" away (head, neck and shoulder shrugging). The teacher then gets even sterner and says don't you shake your head at me. I immediately stepped between them and told the teacher "don't even go there, he has a sever motor tic". Teacher says ok and turns and walks away. I'm mad as there was not an apology and even more frustrating is that anyone should have been able to discern that his body movements were not "normal".I'm about to just send him an email, and chastize him for his insensitivity, but then again my child will probably never see him again. However, he's sure to encounter other children with problems so he should be taken to task.What should I do? Sorry so long

[Guest guest]

If it were me, I would talk to the head of the sped department at our school just to let her know what happened. I think the bigger problem is lack of awareness by this teacher and probably many others as well. Maybe consider doing an inservice on tics at various schools? Or write an article in the school newsletter to raise awareness? You don't have to point to this particular teacher but it's a good example of why people should not assume.

I don't even get why a teacher would be chewing him out like that. Kids will be forgetful. I think that's terrible. I just read a post on another list a few weeks ago where an AS kid had to go back into the school to get his homework after school had ended. A teacher saw him walking in the hallway and chewed him out severely to where he was afraid to go back on his own ever again. He often forgot his homework so this was a big problem. And it did not have to become such a big deal. A calm reminder, "We have to sign in for a pass after school..." would have taught him the appropriate way to do things. Instead now they have a kid who is so afraid and may take months or years to get over that.

RoxannaAutism Happens

( ) What should I do?

I don't post much, but I'm in a quandry as to how to handle a situation that happened at my son's sting concert tonight. He has aspergers, add and a very bad motor tic. His motor tic gets worse when fatiqued and/or stressed (and is something he is very sensitive about). This concert involved a few schools in the pyramid so some of the teachers were unfamiliar with him. After the concert, instead of promptly putting his viola away he dashed off to get refreshments (this was after sitting in a chair for 1.75 hours), leaving the viola in a high traffic area where it could have been damaged. A strings teacher from another school picked it up and when Sam went to retreive it, this teacher began severly chastizing him for leaving his instrument unattended. Ok I was about to do the same.Sam is just looking at him and "ticing" away (head, neck and shoulder shrugging). The teacher then gets even sterner and says don't you shake your head at me. I immediately stepped between them and told the teacher "don't even go there, he has a sever motor tic". Teacher says ok and turns and walks away. I'm mad as there was not an apology and even more frustrating is that anyone should have been able to discern that his body movements were not "normal".I'm about to just send him an email, and chastize him for his insensitivity, but then again my child will probably never see him again. However, he's sure to encounter other children with problems so he should be taken to task.What should I do? Sorry so long

No virus found in this incoming message.Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release Date: 6/4/2008 7:10 AM

[Guest guest]

I would write a letter...It will help you and any other child this person comes in contact with.

( ) What should I do?

I don't post much, but I'm in a quandry as to how to handle a situation that happened at my son's sting concert tonight. He has aspergers, add and a very bad motor tic. His motor tic gets worse when fatiqued and/or stressed (and is something he is very sensitive about). This concert involved a few schools in the pyramid so some of the teachers were unfamiliar with him. After the concert, instead of promptly putting his viola away he dashed off to get refreshments (this was after sitting in a chair for 1.75 hours), leaving the viola in a high traffic area where it could have been damaged. A strings teacher from another school picked it up and when Sam went to retreive it, this teacher began severly chastizing him for leaving his instrument unattended. Ok I was about to do the same.Sam is just looking at him and "ticing" away (head, neck and shoulder shrugging). The teacher then gets even sterner and says don't you shake your head at me. I immediately stepped between them and told the teacher "don't even go there, he has a sever motor tic". Teacher says ok and turns and walks away. I'm mad as there was not an apology and even more frustrating is that anyone should have been able to discern that his body movements were not "normal".I'm about to just send him an email, and chastize him for his insensitivity, but then again my child will probably never see him again. However, he's sure to encounter other children with problems so he should be taken to task.What should I do? Sorry so long

[Guest guest]

>

> If it were me, I would talk to the head of the sped department at our school

just to let her

know what happened. I think the bigger problem is lack of awareness by this

teacher and

probably many others as well. Maybe consider doing an inservice on tics at

various schools?

Or write an article in the school newsletter to raise awareness? You don't have

to point to

this particular teacher but it's a good example of why people should not assume.

>

I agree, I always try to look to the future. And I do consider that if one

person would do this,

then there's probably some others, too. I first assume they just didn't know.

So cover it with

a broad approach.

Jackie

[Guest guest]

Chastise him. Tell him that as a teacher he has a responsibility to understand ALL children. Tell him you will file a complaint. I would file a complaint.

Wallbank - Wittmayer

DOK Grace Chapter

"Prayer without work is empty words,service without prayer is labor lost."

( ) What should I do?

I don't post much, but I'm in a quandry as to how to handle a situation that happened at my son's sting concert tonight. He has aspergers, add and a very bad motor tic. His motor tic gets worse when fatiqued and/or stressed (and is something he is very sensitive about). This concert involved a few schools in the pyramid so some of the teachers were unfamiliar with him. After the concert, instead of promptly putting his viola away he dashed off to get refreshments (this was after sitting in a chair for 1.75 hours), leaving the viola in a high traffic area where it could have been damaged. A strings teacher from another school picked it up and when Sam went to retreive it, this teacher began severly chastizing him for leaving his instrument unattended. Ok I was about to do the same.Sam is just looking at him and "ticing" away (head, neck and shoulder shrugging). The teacher then gets even

sterner and says don't you shake your head at me. I immediately stepped between them and told the teacher "don't even go there, he has a sever motor tic". Teacher says ok and turns and walks away. I'm mad as there was not an apology and even more frustrating is that anyone should have been able to discern that his body movements were not "normal".I'm about to just send him an email, and chastize him for his insensitivity, but then again my child will probably never see him again. However, he's sure to encounter other children with problems so he should be taken to task.What should I do? Sorry so long

[Guest guest]

I would just send him a note, with some facts about tics, apologize for your son leaving his instrument and HIS concern with it, but that you felt for future reference, you felt you should inform him a bit about tics / Aspergers / so perhaps he can recognize it in the future and respond differently. I would also let him know you were taken aback, and disappointed he just took off, rather than accepting responsibility or apologizing to your son or yourself, and that you look forward to receiving one by DATE. Provide an address to send it to, etc. I would request that he apologize to your son, calling would be best, and let him know he is sorry for how he responded last night, etc. That is WHAT I WOULD DO; I think your son needs that to move forward. Additionally, I would let the guy know you want him to say something encouraging to your son about playing, and that he hopes to see him again next year, or something so your son does not dwell on it. That is my advise; I love 's opinions most of the time but I think that 'chastising' him is NOT going to solve anything. I would NOT file a complaint, I would just e-mail him, set up a time that works for you for him to apologize to your son, and then I would thank him / send him a thank you note. KILL HIM WITH KINDNESS-------he already feels like a big idiot! He responded like MOST people would but just did not think about it as a disability, and probably thought your son was making fun of him, being a smart alec, and so I would let him know you are glad he cared enough to attempt to talk with him, even apologize for your son's reponse, as the teacher walked off feeling like a jerk! HE IS A HUMAN; he did not know how to respond so he took off instead. Let's give the guy the benefit of the doubt here! He meant no harm, I am sure of it!!

Ruthie Dolezal

From: w_wittmayer@...Date: Thu, 5 Jun 2008 16:01:54 -0700Subject: Re: ( ) What should I do?

Chastise him. Tell him that as a teacher he has a responsibility to understand ALL children. Tell him you will file a complaint. I would file a complaint.

Wallbank - Wittmayer

DOK Grace Chapter

"Prayer without work is empty words,service without prayer is labor lost."

( ) What should I do?

I don't post much, but I'm in a quandry as to how to handle a situation that happened at my son's sting concert tonight. He has aspergers, add and a very bad motor tic. His motor tic gets worse when fatiqued and/or stressed (and is something he is very sensitive about). This concert involved a few schools in the pyramid so some of the teachers were unfamiliar with him. After the concert, instead of promptly putting his viola away he dashed off to get refreshments (this was after sitting in a chair for 1.75 hours), leaving the viola in a high traffic area where it could have been damaged. A strings teacher from another school picked it up and when Sam went to retreive it, this teacher began severly chastizing him for leaving his instrument unattended. Ok I was about to do the same.Sam is just looking at him and "ticing" away (head, neck and shoulder shrugging). The teacher then gets even sterner and says don't you shake your head at me. I immediately stepped between them and told the teacher "don't even go there, he has a sever motor tic". Teacher says ok and turns and walks away. I'm mad as there was not an apology and even more frustrating is that anyone should have been able to discern that his body movements were not "normal".I'm about to just send him an email, and chastize him for his insensitivity, but then again my child will probably never see him again. However, he's sure to encounter other children with problems so he should be taken to task.What should I do? Sorry so long

[Guest guest]

My child is almost 5 months now with a medium plagiocephaly on his back right

side (the direction he likes to turn his head). I started noticing it at 2

months and have been doing positional therapy and neck streching for a month and

a half now. I'm not sure that I'm seeing improvments.

A month ago we went into get his head measurements and they said he was 8 mm

asymmetrical, with the ear 5 mm off. I know that is definitely not severe, but

it also isn't normal (which is 2-3 mm I think). THe front of his face looks

fine, but I noticed one cheek a little bigger. They recommended treatment, but

maybe they just want my money...and I don't know of any other places to get an

expert opinion.

I have no idea if it'll get better on it's own, or if I should get a helmet.

It's driving me CRAZY and all I can ever think about. If his head were to NOT

improve, I would NOT be happy with it.

Should I wait it own a few more months to see if it rounds out, or get a helmet

now since earlier is better?

*I am new on here, can I post a picture in photos to show you his head?

[Guest guest]

I added photos of my baby in the photo section under " flat spot before "

>

> My child is almost 5 months now with a medium plagiocephaly on his back right

side (the direction he likes to turn his head). I started noticing it at 2

months and have been doing positional therapy and neck streching for a month and

a half now. I'm not sure that I'm seeing improvments.

>

> A month ago we went into get his head measurements and they said he was 8 mm

asymmetrical, with the ear 5 mm off. I know that is definitely not severe, but

it also isn't normal (which is 2-3 mm I think). THe front of his face looks

fine, but I noticed one cheek a little bigger. They recommended treatment, but

maybe they just want my money...and I don't know of any other places to get an

expert opinion.

>

> I have no idea if it'll get better on it's own, or if I should get a helmet.

It's driving me CRAZY and all I can ever think about. If his head were to NOT

improve, I would NOT be happy with it.

>

> Should I wait it own a few more months to see if it rounds out, or get a

helmet now since earlier is better?

>

> *I am new on here, can I post a picture in photos to show you his head?

>