Re: Digest Number 1786

[Guest guest]

HI, Bob,

>I have had an infection for about a week and my

>kidneys ache a bit. I have had a low grade fever and

>been thirsty. In the past every now and then my

>kidneys have been a little tender. I've never had an

>abnormal blood test but it has been a couple of years

>since I had the standard battery of tests.

The standard low-tech test is a sharp rap to the kidneys (you need someone

else to do this to you - docs use a karate-chop motion with about 6 " wind

up). If it results in screaming pain, you have a kidney infection. Other

things to watch for are pain when urinating, and cloudy or reddish urine.

The other thing that may be going on is that you could have a trigger point

there - that's always one of the first to act up in me. Sharp pressure on it

will give pain and a general muscle spasm in the area.

Also, you or someone else may be able to feel a knot in your back muscles

there. If it is a trigger point, the most effective thing is stretching and

massage. My chiropractor puts direct pressure right on the knot and holds it

until the reaction stops, in combination with electrostim and

menthol/camphor gel.

Jerry

_________________________________________________________________

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[Guest guest]

Friends,

Ben has been independent completely with toileting for about 8 months

(counting bedtime.) Here is the progression:

Time-trained during the day with occasional accidents at age 6 (we used

Toilet Training In Less Than a Day, too). But this was pretty much up to

the adult to tell him to go. I carried extra clothing for several years.

Toileting in a public place was not a problem, as soon as he discovered

that there was a chance of finding an electric hand dryer there! So we

always went to public restrooms when we entered a new place, and this

eliminated another worry.

I kept track of how often he needed to go to the toilet for years. I think

maybe he started saying " potty " or " toilet " at jsut last year. Sometime

during age 10 he would just get up and go the bathroom; I would always

follow him to make sure he wan't looking for trouble. We still pretty much

keep very aware when he goes in....

Since he started meds, I knew that Clonidine could cause more loss of

bladder control, so I dropped the idea of night-time training until last

year. I just kept a calendar in the bathroom and we put a sticker on it

every morning that he was dry. It turned out he was dry about 8 days out

of 9. I got up the nerve to stop using the goodnights after he had about

18 out of 20 dry nights. He'd sometimes start to go early in the morning,

and dribble all the way to the toilet. Or, he'd wake up in the night,

soaked, and put on dry things. Taking a cue from me, he would place a big

bath towel on the bed if it was just damp, not soaked, and go back to

sleep. (If it was soaked, then I'd do a quick change.)

He had some " digging out " BM's every few months for a few years (ages 8? 9?

), which meant it got ground into his bedroom rug as he tried to get it off

of his fingers. When I figured out he was constipated, and would go into

his room to relax, (untile he'd start to go and then did it out) I

increased fluids, fiber, and kept an eagle eye on his BM's. We haven't had

a problem with that in a long time. But he tends to go only every 2nd or

3rd day, and we usually have to grab a plunger...!

He tries to wipe himself, and I think is doing ok with it, because I am not

seeing anything to indicate otherwise. (I would help with this, but have

gradually gone to jsut re-wiping until it no longer seems necessary.) As a

friend of mine (who has a child who is blind) told me- " As long as you

don't see 'skid marks' on his underwear, don't worry about it! "

I realize that we have had considerably fewer toileting issues than some

families. I don't believe for a second that I have done anything different

than any of the dozens of things that people on this list have tried. I

can tell you that the biggest help for ME was when I changed my attitude

about not wanting to deal with it. Getting some help when we did the

major ordeal at age 6 was good for me. We took 5 days where we devoted

ourselves to doing only toileting, and worked in shifts. I told everyone

that's what we were doing- just like in the book.

There is a file on the list's page for toileting tips. Please add your

success ideas to the file!

I do know a 44 year old woman with DS whose adult sister toilet trained her

when she came to live with the sister. I used that imagery to push me to

begin toilet training at age 6, becuase like may of you, PB sure showed no

sign of being ready.

Oh yeah. Odo-Ban is our friend! Gallon jugs at Sam's Club.....

Oh, - someone recently posted a tip about putting the diaper (or

pull-up?) under the rim of the toilet so her child could make a transition

that way- and it worked!

Also, another mom took a photo of 'fake poop " in the toilet, blew it up,

and posted it next to the bathroom door. " This is where the poop goes! " .

That was also successful. Talk about a visual strategy!

Good luck, whoever is struggling. This is SO hard.

My take is that all special ed teachers should be prepared to

systematically deal with toileting issues at school. They should be able

to come up with writing up IEP objectives that deal with the child's needs

AND FOLLOW THROUGH. Unbelievable that any parent should have to feel

responsible for writing it up, but that tends to happen. Unfortunately, I

think too few people have any training to work hard on this most important

self-care skill. I have heard of lots and lots of neglect, especially in

segregated classes where kids can't report what's going on.

This is also one area where teachers/professionals dealing mostly with kids

with autism should have some other ways to help. I hear all the time about

BM's in the toilet being a very common issue for kids with autism. I'll

keep my eyes and ears peeled for more tips.

Beth Mum to Ben age 12

[Guest guest]

meat, eggs, cabbage, lost of other brassilic vegetables, MSM, glutathione,

garlic....

[Guest guest]

>>>>In his case I would wonder if it was sulphur. He may be unable to

tolerate sulphur foods.<<<<

What would sulphur foods be? I personally am allergic to it. I wonder if

that's why my son had trouble with taurine.

Thanks.

laura

[Guest guest]

In a message dated 3/19/2003 6:09:53 AM Eastern Standard Time,

writes:

> Dan/GFCFdiet is now a thriving business among alternative autism

> measures that garners lots of $$. The Dan protocol is built around

> the GFCF diet and interests, and so Dan doctors must agree to follow

> that (but fortunately, many of the better ones treat people as

> individuals and look at their exact case). GFCF diet groups and Dan

> doctors sell Kirkman products for a percentage.

, just FYI I have not found this to be true of either of the DAN doctors

who we see. Neither has ever tried to sell us a Kirkman product and one

agrees with Houston Enzymes instead of the GF/CF diet. One is also very

inexpensive.

Michele

[Guest guest]

>>>Neither has ever tried to sell us a Kirkman product and one

> agrees with Houston Enzymes instead of the GF/CF diet. One is

also very inexpensive.

Very good. What area or state do you live in? Might help someone

else out.

The thing is that the option is there and some do. Unfortunately,

this practice does detract from the doctors who are opperating more

ethically. I think what needs to be considered is that a doctor can

be good or a dud for you whether they belong to dan or not. So you

have a doctor who is good because he is a good doctor anyway, and

they are not a good doctor because they are on a dan list. So we

need to consider doctors on their own merit and not get hung up on

whether they have a dan tag or not. I know that not every single dan

person is this way although many definitely are. The dan

organization should be much more responsible in who they put on

their list and who they should be screening off if they want their

list to matter at all. That is where the problem lies.

Anytime a medical person is selling anything they can make money off

of personally, that is a serious conflict of interest and

compromises them. I agree with Dave A on this, that doctors should

be consultants. I haven't ever been aware that a doctor in the US

can't make a decent living being a good doctor and not selling stuff.

.

[Guest guest]

> Anytime a medical person is selling anything they can make money

off

> of personally, that is a serious conflict of interest and

> compromises them.

I would not say, " anytime " because in some cases, it could be helpful

to a parent. The Houston and Kirkman enzymes are only available on-

line, and not everyone goes on-line. Unfortunately, some parents

have to either have a prescription put in their hand, or the product,

or they will not follow through. I'm not sure what the best answer

is here, but I would not automatically bash a doctor for selling

things that aren't easy for all parents to access. I have talked to

many parents who say they have heard about enzymes, but until they

talked to parent using them (me), they don't pursue them. Some

people need much more encouragement than many of us posting here seem

to need.

I'm sure there are cases when a doctor can be faulted, though.

Conflict of interest can get really sticky with people who have

something to sell.

[Guest guest]

Kirkmans' also does mail order. I know because everytime they send me

something, there is an order form. I thought they also did phone

orders.

Re: Digest Number 1786

I would not say, " anytime " because in some cases, it could be helpful

to a parent. The Houston and Kirkman enzymes are only available on-

line, and not everyone goes on-line. Unfortunately, some parents

have to either have a prescription put in their hand, or the product,

or they will not follow through. I'm not sure what the best answer

==

[Guest guest]

You are correct. What I was trying to say and didn't do a very good

job of was that you can't go get them from a store or pharmacy, so in

some cases, I can see where it might be helpful for a doctor to keep

them stocked. I think it would be important to ask a doctor why they

sell a product and why they may not recommend other brands. I would

wonder if a doctor would get stuck on one brand when other good stuff

was coming out.

> Kirkmans' also does mail order. I know because everytime they send

me

> something, there is an order form. I thought they also did phone

> orders.

>

> Re: Digest Number 1786

>

>

> I would not say, " anytime " because in some cases, it could be

helpful

> to a parent. The Houston and Kirkman enzymes are only available on-

> line, and not everyone goes on-line. Unfortunately, some parents

> have to either have a prescription put in their hand, or the

product,

> or they will not follow through. I'm not sure what the best answer

> ==

>

>

>

>

>

>

>

>

>

>

[Guest guest]

In a message dated 2/17/2005 6:08:50 PM Central Standard Time,

writes:

From: " M. , MS, BCBA " <behavioranalyst@...>

Subject: RE: Evaluation Criteria for Behaviorist

Hopefully this will help you get started --

http://www.behavior-consultant.com/discuss-hireBA.htm

http://www.theraceschool.org/aba/get_started.htm#Search%20for%20an%20ABA%20c

onsultant

============ ,

Thanks for the link at behavior-consultant. it's good to know yet another

professional whose opinion is similar to mine regarding the " associate " level of

board certification.

Selma

[Guest guest]

In a message dated 3/13/05 6:55:56 AM Eastern Standard Time,

writes:

> te: Sat, 12 Mar 2005 21:50:04 -0000

> From: " zoe88025 " <Zll51@...>

> Subject: Sunlight sensitivity and AEDs-tegretol

>

>

> Cautions on UV light when using tegretol ( Carbamazepine ):

>

Zoe and all

Our experience is as follows: we live on a farm and Charlie (with his fair

skin, red hair and blue eyes) spends hours a day, year around outside.

Walking, doing chores, etc.

He has never used a sunscreen, but I insist he wear a well ventilated hat to

keep his head from overheating and triggering seizure activity (gran mal).

From birth to age 21, he was on phenobarb and dilantin plus psycotrophic

drugs...... ADHD and autistic behavior like you would not believe as a kid (we

got him at age six years).

From age 27 to current, he's been on Depakote plus a couple years each on

Neurontin and Felbutol. From 1999 to late 2004 on Lamictal. He is on Depakote

monotherapy now.

Rarely sunburn, then only mild. Never a sun induced rash.

Always a healthy whole foods diet.

The sun is so critically important to so very many of the body's processes,

it pains me how little active outside time he's had since the cancer diagnosis.

Vitamin D is only part of the picture here. THe melatonin/serotonin axis

needs also to be considered plus some other things I can't remember right now.

Gotta go do wound care

CHarlie's Mom