Frustrated!

[Guest guest]

,

Isn't it tulle or with the larger holes just called netting ? I bought some

& found it in " Ben lin " craft stores.

Walmart had the tulle with small holes.

hth ,

Joyce

>HI EVERYONE!

>

>I HAVE BEEN SEARCHING FOR A MATERIAL THAT RESEMBLES NYLON, IT IS VERY

POPULAR IN THE MAKING OF BATH/SHOWER WASH GLOVES.

>THEY ARE SOLD EVERYWHERE SUCH AS DOLLAR STORES PHARMACY'S BODY SHOP ETC...

>NEEDLESS TO SAY I HAVE HAD NO LUCK! ANYONE HAVE A CLUE WHAT THIS MATERIAL

IS CALLED? AND WERE I CAN FIND A SUPPLIER?

>OR WHICH DIRECTION TO GO? I HAVE TRIED CONTACTING THE STORES, &

DISTRIBUTORS NO LUCK

>

>CHRISTINA

>

>

>

[Guest guest]

HMMMMM.. How familiar that sounds..<br><br>I

played that B.S. game for almost 2 years.. The thing is,

I did it from 12-15.5, supposedly, the umm, " best

years of my life " , or something, lol.<br><br>Pain made

things undoable. I guess I suggest to you, keep trying..

I had to go to 7 O.S. before I found one to do the

scope, and he found some " icky " cartilidge, and an

inflamed plica.. Same knee that I was told " I'd grow out

of it. " <br><br>Try PT again, too. PT was a big help,

but it took like a year to start working.<br><br>GOOD

LUCK!<br><br>~

[Guest guest]

Belinda:

I don't want to tick you off more. () But our immuno, while agreeing that

using antibiotics too much is a terrible thing in the *general* population,

feels that " liberal use " (her words) of antibiotics in PID patients is the

best course of action. She feels you should jump on everything before it

becomes a problem. By everything I mean ear infections, sinus infections,

etc. -- not colds or any other viral-looking illnesses.

My question would be are these bacterial illnesses he's not treating with abx

or is he assuming they are viruses and therefore do not warrant antibiotic

treatment? I guess where you go from there is if there appears to be a sinus

infection he doesn't want to treat, you could do a sinus CT to look for

infection, or do a culture.

When you say Lacey is getting sick again 3 days off the med, what kind of

sick? Recurrence of ear, sinus or lung infection? That would seem to me to

say the course was not long enough or maybe not the right drug. But if she's

just catching new bugs all the time (URI, then gastro infection, then viral

syndrome, then hand/foot/mouth, etc.), that certainly stinks (BTDT!!) but I

don't think that staying on abx would help. Does that make sense? Just trying

to get a handle on what your doc is thinking.

Anyway, you certainly don't want to use antibiotics for viral infections, but

my immuno feels every bacterial infection in a PID patient should be treated

aggressively.

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4, dairy

intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

[Guest guest]

Oh, something else I wanted to mention. I don't want to imply your ID doc

doesn't know what he's doing. But what happened to us implied that ID docs

aren't necessarily experts on PIDs.

When had pneumococcal meningitis, she was treated by some renown

infectious disease docs at a good children's hospital. They told us it was a

fluke that she got meningitis. Fine. But our ped (God bless that man) felt

that the run of illnesses had started to have (and the meningitis)

merited testing her immune system. IgG, IgA, IgM all low. He didn't know what

to do with those results so had us take the tests back for her one month

follow-up with ID in the hospital. The top doc we had seen told us that the

low #s were probably from her system being depleted after having fought such

a huge illness. WRONG!!!!!!!!!!

Our immuno has since told us the complete opposite is true. That after a huge

disease like that your system would show elevated #s, not low #s. Thankfully

the ped decided to have us see an immuno anyway.

Our immuno is Infectious Diseases and Immunology, so she does both. Maybe

yours does too, I don't know. And I certainly wouldn't want you asking him if

he really knows what he's doing! () But maybe a workup with a " true "

immunologist (there's been some discussion that immuno/allergy docs might not

be best either?) might be in order, especially if you are not comfortable

with the care she's receiving.

HTH

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4, dairy

intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

[Guest guest]

In a message dated 4/14/2003 7:12:05 AM Pacific Standard Time,

bunneegirl@... writes:

>

> When you say Lacey is getting sick again 3 days off the med, what kind of

> sick? Recurrence of ear, sinus or lung infection?

>

> Hi ~~

>

> Exactly! Her previous symptoms start creeping back. She starts getting a

> lot of nasal secretions, her face swells, she starts coughing, then she

> ends up needing Lasix because when her lungs are irritated or in trouble,

> she gets too much fluid on them and needs a diuretic. She starts not

> sleeping well at night again......tosses and turns....you can hear the junk

> in her head draining, she coughs and needs extra breathing treatments, etc.

> The problem is that her doctor probably is unsure if it's a virus or

> bacterial and doesn't want to treat her unless he's sure it's batcterial.

> So how do you know???? Wait and see if she gets REALLY sick? I'd rather

> not!! But how do you know??? Her infections are always respiratory in

> nature. She's fed by Gtube and takes Prilosec for reflux, so she really

> doesn't have any GI problems.

>

> I just wonder if I can dare to dream of a day when she doesn't have to

> cough or need suction, or breathing treatments, or vest treatments. She's

> the most precious little human being I've ever known and I'm so proud that

> God saw fit to put us together the way He did. It just breaks my heart when

> she has to be sick. But then I'm sure I don't have to tell any of you

> this!!

By the way......that was so funny reading about the difference in opinion

about IgG levels when sick. Lacey's ID said the very same thing...that maybe

her body " uses up more IgG " when she's really sick!! When he first met us,

she was in the ICU and her IgG was 278, with the norm levels being 840-2000!

Thank you so much for your information and support~~

Belinda

Lacey's mom, (15, CdLS, IgG deficient, IVIG)

<A HREF= " http://www.cdls-support.org/family/aug2001/index.html " >CdLS OSG:

Featured Family of August 2001</A>

[Guest guest]

In a message dated 4/14/2003 3:28:38 PM Central Standard Time,

Lacey449@... writes:

> The problem is that her doctor probably is unsure if it's a virus or

> > bacterial and doesn't want to treat her unless he's sure it's batcterial.

>

I'll probably sound like an idiot trying to play doctor but I just want to

help. If Lacey mounts a predictable white cell response (something we were

able to determine because got CBCs with every big fever to try to see

if they were bacterial or not and we were able to see over time that she

mounts a nice, predictable response... but some kids trick you and don't

mount a good white blood cell reponse), maybe they could do a fingerstick CBC

with an illness and see if it " looks " bacterial. THough there might not be

much to go on if the infection is mild. Or is there some kind of sputum

culture you can cough up and test? I know there's a lavage sinus thingy where

they snake a tube up your nose and culture the stuff.

Also, when you DO get treatment abx, are they giving a good long course?

has needed stronger drugs over the last three years, we use one med

until it doesn't work as well and move to the next one, then move to longer

courses, etc. Maybe changing the antibiotic is a possibility next time?

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4, dairy

intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

[Guest guest]

In a message dated 4/14/2003 10:34:58 PM Pacific Daylight Time,

bunneegirl@... writes:

> If Lacey mounts a predictable white cell response

So if her white cell count goes up, that means it's bacterial? When her

doctor put her on antibiotics last time, (a 10 day course of Augmentin), her

WBC was 17,000. I thought 10 days wasn't enough, but he didn't want to do a

second course. She'll be seen tomorrow and have labs drawn before they start

her IVIG, so we'll see then.

Thanks for your help~~

Belinda

Lacey's mom, (15, CdLS, IgG deficiency)

Pittsburg, CA

<A HREF= " http://www.cdls-support.org/family/aug2001/index.html " >CdLS OSG:

Featured Family of August 2001</A>

[Guest guest]

In a message dated 4/15/2003 8:26:52 AM Central Standard Time,

Lacey449@... writes:

> So if her white cell count goes up, that means it's bacterial?

As with all things immunological, the answer is: Maybe. I am the type to

want black or white, cut and dried answers. That has been one of the

frustrating aspects of this disease.

If you mount a predictable white cell response, your white count should

become elevated above normal range for a bacterial infection. Some kids don't

do this, which would be even more frustrating. is textbook -- if she's

healthy her #s are well within range, 8,500 or so. If she has a virus, her #s

go 5,500 or lower, down to 3,200 or so, which is actually a little low. If

she has a nasty bacterial infection (pneumonia, sepsis, etc. -- don't know

how high she goes for something like a sinus infection or ear infection), she

is anywhere from 16,000 to 26,000. The 16,000 I think is actually borderline,

but we know that for that means an infection because it's well above

*her* average normal.

This sounds like a great tool for measuring infection but we are extremely

lucky that it works this well for us -- I wouldn't recommend demanding CBCs

for every infection or anything, it's just another tool.

At the same time, they are looking at the proportions of lymphocytes,

neutrophils, bands, etc. in the blood. This is a CBC with differential. If

the differential shows a " left shift " , that points more to a bacterial

infection. There are a couple of ways to gauge a left shift, but the easiest

for me to remember is " lymphocytes low = left shift " .

Anyway, the hitch in this process is that sometimes in the very early stages

of a virus, your white count can become pretty elevated, something to do with

the body calling out all its troops or something? AND sometimes the " left

shift " is a little tricky to interpret as well.

So 's protocol from the immuno was that for a high fever she'd get a CBC

w/differential, blood culture and the big dose of Rocephin, repeating this

process for three days in a row. (this protocol was in place because she had

some significant deficits, had had meningitis once and was under no

treatment) We had the " opportunity " (tongue in cheek) through this torture to

see how 's body reacted to different illnesses. There definitely were

times where she obviously had a cold, but immuno would not let us skip the

protocol, just in case. So we got to see what her WBC was for all sorts of

illnesses. And we got to see that tricky little process where the bloodwork

looks somewhat bacterial the first day and then didn't at all the second day

and it did turn out to be a virus.

But I can say that when her bloodwork looked DEFINITELY bacterial, it always

was, like a white count of 26,000 and lymphocytes down to the pitiful 4%

range. Plus you add in other tools like fever, etc., and you can get somewhat

confident you know what you're dealing with.

In hindsight, it was very educational to do this, but it sure was a lot of

sticks for and not something I'd recommend unless there's a medical

reason to do so (not unless it's the doc's idea).

Oh -- now that 's much better, we don't have to do that protocol but if

she seems very sick or looks really bad we do it. It's left to the ped and

our discretion now, what a relief. I will never forget arguing with the

immuno over the phone at 11pm because I knew she had a cold (I had it too,

exact same symptoms and high fever) but she was insisting we go to the ER.

What a switch, usually you're begging the doc to be more concerned, right?!!!

Thank the Lord those days are gone for us.

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4, dairy

intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

[Guest guest]

In a message dated 4/15/2003 8:26:52 AM Central Standard Time,

Lacey449@... writes:

> So if her white cell count goes up, that means it's bacterial?

As with all things immunological, the answer is: Maybe. I am the type to

want black or white, cut and dried answers. That has been one of the

frustrating aspects of this disease.

If you mount a predictable white cell response, your white count should

become elevated above normal range for a bacterial infection. Some kids don't

do this, which would be even more frustrating. is textbook -- if she's

healthy her #s are well within range, 8,500 or so. If she has a virus, her #s

go 5,500 or lower, down to 3,200 or so, which is actually a little low. If

she has a nasty bacterial infection (pneumonia, sepsis, etc. -- don't know

how high she goes for something like a sinus infection or ear infection), she

is anywhere from 16,000 to 26,000. The 16,000 I think is actually borderline,

but we know that for that means an infection because it's well above

*her* average normal.

This sounds like a great tool for measuring infection but we are extremely

lucky that it works this well for us -- I wouldn't recommend demanding CBCs

for every infection or anything, it's just another tool.

At the same time, they are looking at the proportions of lymphocytes,

neutrophils, bands, etc. in the blood. This is a CBC with differential. If

the differential shows a " left shift " , that points more to a bacterial

infection. There are a couple of ways to gauge a left shift, but the easiest

for me to remember is " lymphocytes low = left shift " .

Anyway, the hitch in this process is that sometimes in the very early stages

of a virus, your white count can become pretty elevated, something to do with

the body calling out all its troops or something? AND sometimes the " left

shift " is a little tricky to interpret as well.

So 's protocol from the immuno was that for a high fever she'd get a CBC

w/differential, blood culture and the big dose of Rocephin, repeating this

process for three days in a row. (this protocol was in place because she had

some significant deficits, had had meningitis once and was under no

treatment) We had the " opportunity " (tongue in cheek) through this torture to

see how 's body reacted to different illnesses. There definitely were

times where she obviously had a cold, but immuno would not let us skip the

protocol, just in case. So we got to see what her WBC was for all sorts of

illnesses. And we got to see that tricky little process where the bloodwork

looks somewhat bacterial the first day and then didn't at all the second day

and it did turn out to be a virus.

But I can say that when her bloodwork looked DEFINITELY bacterial, it always

was, like a white count of 26,000 and lymphocytes down to the pitiful 4%

range. Plus you add in other tools like fever, etc., and you can get somewhat

confident you know what you're dealing with.

In hindsight, it was very educational to do this, but it sure was a lot of

sticks for and not something I'd recommend unless there's a medical

reason to do so (not unless it's the doc's idea).

Oh -- now that 's much better, we don't have to do that protocol but if

she seems very sick or looks really bad we do it. It's left to the ped and

our discretion now, what a relief. I will never forget arguing with the

immuno over the phone at 11pm because I knew she had a cold (I had it too,

exact same symptoms and high fever) but she was insisting we go to the ER.

What a switch, usually you're begging the doc to be more concerned, right?!!!

Thank the Lord those days are gone for us.

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4, dairy

intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

[Guest guest]

In a message dated 4/15/2003 8:26:52 AM Central Standard Time,

Lacey449@... writes:

> So if her white cell count goes up, that means it's bacterial?

As with all things immunological, the answer is: Maybe. I am the type to

want black or white, cut and dried answers. That has been one of the

frustrating aspects of this disease.

If you mount a predictable white cell response, your white count should

become elevated above normal range for a bacterial infection. Some kids don't

do this, which would be even more frustrating. is textbook -- if she's

healthy her #s are well within range, 8,500 or so. If she has a virus, her #s

go 5,500 or lower, down to 3,200 or so, which is actually a little low. If

she has a nasty bacterial infection (pneumonia, sepsis, etc. -- don't know

how high she goes for something like a sinus infection or ear infection), she

is anywhere from 16,000 to 26,000. The 16,000 I think is actually borderline,

but we know that for that means an infection because it's well above

*her* average normal.

This sounds like a great tool for measuring infection but we are extremely

lucky that it works this well for us -- I wouldn't recommend demanding CBCs

for every infection or anything, it's just another tool.

At the same time, they are looking at the proportions of lymphocytes,

neutrophils, bands, etc. in the blood. This is a CBC with differential. If

the differential shows a " left shift " , that points more to a bacterial

infection. There are a couple of ways to gauge a left shift, but the easiest

for me to remember is " lymphocytes low = left shift " .

Anyway, the hitch in this process is that sometimes in the very early stages

of a virus, your white count can become pretty elevated, something to do with

the body calling out all its troops or something? AND sometimes the " left

shift " is a little tricky to interpret as well.

So 's protocol from the immuno was that for a high fever she'd get a CBC

w/differential, blood culture and the big dose of Rocephin, repeating this

process for three days in a row. (this protocol was in place because she had

some significant deficits, had had meningitis once and was under no

treatment) We had the " opportunity " (tongue in cheek) through this torture to

see how 's body reacted to different illnesses. There definitely were

times where she obviously had a cold, but immuno would not let us skip the

protocol, just in case. So we got to see what her WBC was for all sorts of

illnesses. And we got to see that tricky little process where the bloodwork

looks somewhat bacterial the first day and then didn't at all the second day

and it did turn out to be a virus.

But I can say that when her bloodwork looked DEFINITELY bacterial, it always

was, like a white count of 26,000 and lymphocytes down to the pitiful 4%

range. Plus you add in other tools like fever, etc., and you can get somewhat

confident you know what you're dealing with.

In hindsight, it was very educational to do this, but it sure was a lot of

sticks for and not something I'd recommend unless there's a medical

reason to do so (not unless it's the doc's idea).

Oh -- now that 's much better, we don't have to do that protocol but if

she seems very sick or looks really bad we do it. It's left to the ped and

our discretion now, what a relief. I will never forget arguing with the

immuno over the phone at 11pm because I knew she had a cold (I had it too,

exact same symptoms and high fever) but she was insisting we go to the ER.

What a switch, usually you're begging the doc to be more concerned, right?!!!

Thank the Lord those days are gone for us.

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4, dairy

intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

[Guest guest]

Liz,

You will really need to rest them. However, ask your doctor about water

exercises. Maybe you can swim, or take an aquaerobics class or something.

Su the Hobbit

[Guest guest]

I didnt even think about water aerobics. I have a pool so that

would work. I'll check with my chiro today. Thanks!

liz

> Liz,

>

> You will really need to rest them. However, ask your doctor about

water

> exercises. Maybe you can swim, or take an aquaerobics class or

something.

>

> Su the Hobbit

[Guest guest]

Hi Liz,

I know it feels so bad when you have to miss workouts. I took this

post off another board thought it was suitable to your situation:

'I always love when I see people worry about a week layoff from the

gym. They fear that all of their results will suddenly disappear, and

they think that they will suddenly wake up fat the next day if they

stay out of the gym for a single day.

I ask them " did you build a fortress or a sandcastle? " . Because when

you build a fortress you carefully use the best materials and finest

craftmansship to construct something that can take a beating and still

survive. Yet when you build a sandcastle, the smallest breeze may

upset the entire structure.

Are your workouts intense, is your diet constructed of the best

things? Or do you survive on near starvation, lots of fat burners and

endless hours of exercise to attempt to burn every calorie to make up

for half assed meals and multiple cheats?

A fortress can take a few cannonballs it the face and still stand

tall. A sandcastle falls at the first wave and never returns.

Which one are you?'

This was originally posted by Cnik

Hang in there

Understanding

> Ugh!!!! I am SOOO frustrated! I have some serious shit splints,

> and it hurts to walk at all. It hurts to even stand. My chiro said

> to stay off them for awhile, and forgo my usual work outs. This

> stinks!!! I can't even do 1/2 of the UBWO cause it hurts to stand

> and hold the weights!

>

> Anyone have any good advice? My hubby keeps telling me that as long

> as I keep eating clean (which I am), I'll be fine, and that I can

> get back to my heavy workouts when I get better. But this isn't

> good enough for me! I just HATE how I feel when I don't work out!

> But I don't want to make my legs worse. Ughhh....

>

> Liz

[Guest guest]

,

Same problem at roughly the same age. Zack did that last year when he was 9

turning 10. I think in his case it was a lot of stress from his teacher and

aide (could write a book about those two " ladies " .), but most of it was him

trying to be in control of something. Like you, we have to schedule him, or he

will hold it forever. Only now, is he starting to want to go on his own.

Usually, he goes with daddy, or we tell him he has to go before he can do

something. We used rewards for staying dry. A trip to the video store or a

new

Nintendo game. We even got to the point of threatening to send diapers to

school.

He didn't want that. We asked his aide at school to take him several times

a day, and to listen at the door to make sure he went. Sometimes she would

take him to the nurses office, so she could make sure he went. I know it seems

hopeless, but Zack outgrew it and will too. I know that even I will

hold it sometimes until the point of no return! So, it isn't only our kids,

who like to push the limits!

Good luck!

Sue - mom to Zack, 11, DS, 2 ASDs, VSD, Bad Mitral Valve; Matt, 9, 's

Anamoly, Cataracts, Glaucoma, PDD, PFO, hearing loss; , (4/20/96 -

12/31/00), DS, g-tube, TOF; Sami, born 11/16/2002, possibly autistic, the most

spoiled

princess

<A HREF= " www. hometown.aol.com/zmadad/page11.html " >DisLabeled Writing</A>

<A HREF= " www.hometown.aol.com/zmadad/page9.html " >'s Memorial Page</A>

<A

HREF= " http://www.artwells.com/oracula/anonimmus/shrine.html?shaemmusid=011123804\

5898 " >'s Candle Shrine</A>

[Guest guest]

I was thinking of writing on this very topic. (8) is doing the exact

same thing right now. The last 2 years he probably had 2 or 3 accidents. This

year - they are changing his clothes almost daily. He's doing it everywhere. And

I iwll take him to potty before we leave the house and I'll see that darn wet

spot in no time. THE LAUNDRY!!!!! I was thinking it must be some sort of medical

problem. Am thrilled to hear that he might just outgrow it. It smells too!!!

(obviously).

in Dallas

Frustrated!

I'm wondering if anyone out there has a similar problem. will have

little accidents, almost like leaking. There will be a wet spot in his crotch,

but not a full fledged accident. He has been in underwear since he was 4,

however, he has pretty much been on a schedule because he will hold it forever

if we let him. He has had this problem before, but it is happening at school

which I'm not happy about. Anyone else have this problem? Any ideas?

(9, ds), Grace (6)

[Guest guest]

I'm right there with you on the Laundry! 's shorts and pants supply are

limited because he is so hard to fit, so I am constantly washing so he has

enough bottoms!

I can tell you that I have determined that there are three situations that can

cause that wet spot. 1) waiting too long to use the toilet, 2) when

ignores the urge to have a BM and 3) when he is nervous. It almost

always happens when we are at the doctor's, so I've started putting a panty

liner in his underwear when he has a doctor's appointment...works great! I

won't go so far as to use the panty liners at school...don't think it will help

phis status much at school if it was discovered...lol.

THE LAUNDRY!!!!! I was thinking it must be some sort of medical problem. Am

thrilled to hear that he might just outgrow it. It smells too!!! (obviously).

in Dallas

[Guest guest]

went throught this stage. I haven't noticed it as much lately - so

there is hope.

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.518 / Virus Database: 316 - Release Date: 9/11/2003

[Guest guest]

In a message dated 9/17/03 2:28:29 AM Central Daylight Time,

writes:

> I'm wondering if anyone out there has a similar problem. will have

> little accidents, almost like leaking. There will be a wet spot in his

> crotch, but not a full fledged accident. He has been in underwear since he

was 4,

> however, he has pretty much been on a schedule because he will hold it

> forever if we let him. He has had this problem before, but it is happening at

> school which I'm not happy about. Anyone else have this problem? Any ideas?

>

>

> (9, ds), Grace (6)

>

did this a lot during and immediately after toilet training. He is much

better now but if he is stressed or not feeling right it may happen a few

times.

Karyn

[Guest guest]

In a message dated 9/17/03 2:28:29 AM Central Daylight Time,

writes:

> I was thinking of writing on this very topic. (8) is doing the

> exact same thing right now. The last 2 years he probably had 2 or 3

> accidents. This year - they are changing his clothes almost daily. He's doing

it

> everywhere. And I iwll take him to potty before we leave the house and I'll

see

> that darn wet spot in no time. THE LAUNDRY!!!!! I was thinking it must be some

> sort of medical problem. Am thrilled to hear that he might just outgrow it.

> It smells too!!! (obviously).

> in Dallas

>

Just a reminder to check that he isn't getting unintentionally reinforced in

some way by doing this.

Once had more control he would do this to get a reaction out of people.

Easy to do since it is very frustrating.

I started dressing in T shirts that covered him so if he did have a bit

of an accident it wasn't obvious.

Karyn

[Guest guest]

In a message dated 9/17/03 8:16:01 AM Eastern Daylight Time,

Kvanryzin@... writes:

> Just a reminder to check that he isn't getting unintentionally reinforced

> in

> some way by doing this.

> Once had more control he would do this to get a reaction out of

> people.

> Easy to do since it is very frustrating.

> I started dressing in T shirts that covered him so if he did have a

> bit

> of an accident it wasn't obvious.

>

> Karyn

>

>

resisted toilet training because it was easier just to have an

accident and let someone ELSE clean up. Once I insisted that SHE be the one who

took

care of cleaning up (she was 4 at the time) , the problem stopped.

Now at age 11 she is refusing to use the school bathroom. She can hold it

all day. In her old school most of the batrooms were dark and small - her aide

found one in the building that was new and nice and she would use that. She

is in a brand new school this year, but won't even go inside the door to check

it out. I'm going to go up to the school and give her a private tour after

hours so she can check it out and see that the bathrooms are OK.

Meanwhile if your child has an aide you may just have to discuss scheduling

regular breaks. Some kids (my non-DS son, age 10, for example!) are really bad

about anticipating their bladder and bowel needs, and when they suddenly

realize there is an issue they have to react quickly to avoid having an

accident.

We have to remind him EVERY time before we go out the door to stop by the

bathroom first. Even then he is often in a hurry and doesn't spend as much time

as he should and finds he needs to use the bathroom again 3 minutes later.

- Becky

[Guest guest]

Hi

Just wanted to say my heart goes out to your little boy, hope he recovers soon

this must be an awful time for you. You are both in my prayers - God bless.

Lorna

Mum to Aubrey 7 years and Imara 10 months

Liverpool, England

[Guest guest]

Hi

Just wanted to say my heart goes out to your little boy, hope he recovers soon

this must be an awful time for you. You are both in my prayers - God bless.

Lorna

Mum to Aubrey 7 years and Imara 10 months

Liverpool, England

[Guest guest]

Hi! I don't know if you read my earlier post, but my son Jordan age 12 just

had a tonsillectomy Aug. 2 too. He just had an episode of this weekend.

He c/o of an extremely sore throat with multiple mouth sores along with

headache and leg aches. I was so dissappointed as I hoped the tonsillectomy

would

end all of this. I knew there was no guarantee, but it's hard not to be

hopeful, otherwise why would we put them through the surgery. I did go ahead

and

give him prednisone and the symptoms were gone the next day! I figure we will

get hit in about 2 weeks, just in time for our soccer tournament in St.

Louis! I guess we just hang in there and hope for better days to come! Machell

[Guest guest]

Hi! I don't know if you read my earlier post, but my son Jordan age 12 just

had a tonsillectomy Aug. 2 too. He just had an episode of this weekend.

He c/o of an extremely sore throat with multiple mouth sores along with

headache and leg aches. I was so dissappointed as I hoped the tonsillectomy

would

end all of this. I knew there was no guarantee, but it's hard not to be

hopeful, otherwise why would we put them through the surgery. I did go ahead

and

give him prednisone and the symptoms were gone the next day! I figure we will

get hit in about 2 weeks, just in time for our soccer tournament in St.

Louis! I guess we just hang in there and hope for better days to come! Machell

[Guest guest]

Oh, ! I wish you lived closer. I'd have you bring that baby over

here so I could watch him while you go to work! Does your children's

hospital have a " day care " for sick kids? A lot of pediatric hospitals do.

It's worth a check. Also, I'd get him back to the ENT as soon as possible.

We're praying for you both.

Rosemarie

Mom to Danny age 10

Denver, CO