Question

February 3, 2005

I donned a swimsuit and joined my daughter. I wanted her

concentrating on the skills we were learning, not the differences in

our bodies. She cannot wash her hair well, because it is long, but

she always comes out " sparkly clean " as she says. Pictures are a

great way to go...if you have a camera, you can make your own. I'm

including a websight to inspire you, though pictures other than the

samples come for a 20.00 membership fee. But, this might be worth

it for you, if you've never used it or used it with success when he

was younger.

http://www.joeschedule.com/

Here is an American sign language website, that includes clip video

of how to do the signs. If your son is proficient at computer,

learns well visually, this may give him a unique opportunity to

learn to communicate through sign. I used sign when my child was

first diagnosed...she still remembers the ones we use. Just

learning a few like " stop " , " eat " , " shower " , " wait " (which is hard to

make a picture of) can make life easier for everyone. I encourage

you to check this out...communication is key.

http://commtechlab.msu.edu/sites/aslweb/browser.htm

What types of communications devices have been offered to him by the

school? I'm so afraid you'll tell me none...and they really need to

help you on this. But you can do it....i'm sure you've done it all

for your son, and you can do this too. But you are right, you want

to do it now:0). You actually inspired me last night...sometimes we

get so caught up in just getting it done, that we do so much of it,

regardless of our kids abilities(slapping my own hand for that one,

lol)...so at bath time last night, i added something we've not

achieved....the drying of ones own body and putting on

clothing...oh, of course she can do it, but i am obviously her

personal assistant...i think she sees herself a diva:0). I showed

her in a comedic way, to keep her attention, exactly what to do

after getting out of the tub....and by georgie, she did it!!! So,

thank you for making me step it up a notch! I can only hope that

one of the links i gave you will help you as much!!!

hugs,

scarlett

>

> Hello,

>

> I have a question please? My son just turned 12 last week. He is

for the most part non-verbal and we still haven't hit on the best

way to communicate with him.

>

> How do I go about getting him to wash his own hair and bathe?

How do I get him to start wiping himself after toileting? How do I

get him to understand that he needs to start doing some things for

himself? How do I get him to start dressing himself? {He can already

undress himself with no problem.}

>

> Any and all advice is welcome...I really don't want to be doing

some of these things on a teenager, then he will soon be a man.

Thanks!

>

> Thanks,

> Theree

> Mom to Tanner, 17, ADHD and Tucker, 12, Autism.

February 11, 2005

HI Pat,

Good to hear from you again.

My son Calvin was dxed as neutropenic prior to getting his dx of XLA. For 1 and

1/2 years we lived the " neutropenic " lifestyle. Here is my understanding:

If your son is neutropenic, then every time he runs a fever of over 100.5F(I

think that is 38C), he needs to be seen for a blood count, including a manual

differential( particularly, the Absolute Neutrophil Count-ANC), and blood

culture, to see if he is neutropenic and has a bacterial infection. This

includes taking him to the ER if necessary.

If he is neutropenic and has a bacterial infection, his illness will appear

viral. Many visible symptoms of bacterial infection are related to the

neutrophilic action against the infection. Because he has no neutrophils, then

you will not see these symptoms. That is why it is so important to have him seen

at the sign of fever, even if he does not look like he has a bacterial

infection.

If he has neutropenia and a bacterial infection, he is at a high risk for sepsis

or other major infections. It is important to act quickly since a neutropenic

child does not have the needed defense to keep the infection from overwhelming

the system. If he is neutropenic and febrile, they will likely give him a strong

antibiotic as a preventative. If the culture returns positive later on, then

they will continue on appropriate abx.

There are drugs to help stimulate the production of Neutrophils.

G-CSF(Granulocyte-Colony Stimulating Factor), otherwise known as Neupogen, can

in some cases help to raise the neutrophil count in the blood. You would need to

contact the " Severe Chronic Neutropenia International Registry " (SCNIR) for more

information. A hematologist can help you decide what treatment is right.

Neutropenia is a separate type immune disorder, which is not really under the

scope of this discussion group. Many PID kids, like my son, do have

neutropenia issues in addition to their Primary Immune Disorder. has a

neutropenia discussion forum, and a simple search could tell you how to enroll.

My son Calvin, prior to IVIG, would not run fevers easily at all. He would look

sick for a long time before his temp would rise above the threshhold. Since

IVIG, he seems to mount a more aggressive response to illness and will actually

run a fever. Since IVIG his white blood cell numbers have stabilised

somewhat----his neutropenia was cyclic in nature. We have managed to lose the

neutropenia dx. Since IG treatment, Calvin has never gone " clinical " again in

his neutrophil counts, though I suspect that he is not totally stable, either.

I hope that helps. I would check out the neutopenia group. YOu get a lot

more info there.

Fisher

mom of Calvin, 4yo(!!!), XLA

mipatj <mipatj@...> wrote:

Hi

To all sorry but been away from the board for a long time but we have

been buying a house+decorating etc who has CVID has been in

hospital alot has now got a port fitted as his vains have given up

and now has developed epilepsy and now it look's like he's

neutropenic as well.

Now for the questions

1)What if anything should be done about him being neutropenic ie-

should we be more carefull of infection should he be takeing even

more med's etc anything anyone can tell or advise would be great also

is it tied with the CVID or is it not related.

Also can someone tell me what this sentance mean's it was in his

notes that abtained a copy off but i just get shrugged shoulders when

i ask or they are just not listening to me

" It was intresting reading that his HLA-DR CD3 positive cells were

lessthan 1% "

I back now and hope to contribute more to the board when i can give

help/advise etc to others.

Thaks for reading Pat

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

February 11, 2005

Hi lisa

Thankyou it did help quite abit we live in the UK neutrophils

have been baorder line to nearly zero since July last yeast he had

alot of infections last year that needed IV antibiotics so alot of

time was spent in the hospital,he just does not seem able to fight

the infections so well this last year for some reason and it was not

untill i got his med notes for the year that this neutrophil was

appearing every time that they had took blood's.On the last set taken

they have stayed low and at the moment they have stayed low ,here we

have a influenza outbreak and has very little protecion against

it even with the IVIG,so am being very carefull.

To give you an idea the last time he was ill the first day they

took bloods in the hospital his CRP was 30 should be up 0-8 for

normall then the next day it was 156,so he was quite sick to me this

would go what you are saying about the infection taking over his body

and the bit you said about it appearing viral this is what the doc

told me it was and he did not need antibiotics(but i knew he did)the

antibiotics they gave him there was two of them was really very

strong i think and one of them so strong they can only give it for

three day's the rate of the infection took hold even the doc's where

serprised.

Thanks for the info and if you can shed anymore that would be great

also,i am going to print this off and show it to his pead doc because

he does what he can but at the end of the day this is not his field

and will do with in reason what ask because he listens to me and

takes real good care of more so than the immuno doc and he also

treat's the infections more agressivley then the immuno.

Pat

>

> Hi

> To all sorry but been away from the board for a long time but we

have

> been buying a house+decorating etc who has CVID has been in

> hospital alot has now got a port fitted as his vains have given up

> and now has developed epilepsy and now it look's like he's

> neutropenic as well.

>

> Now for the questions

> 1)What if anything should be done about him being neutropenic ie-

> should we be more carefull of infection should he be takeing even

> more med's etc anything anyone can tell or advise would be great

also

> is it tied with the CVID or is it not related.

>

> Also can someone tell me what this sentance mean's it was in his

> notes that abtained a copy off but i just get shrugged shoulders

when

> i ask or they are just not listening to me

>

> " It was intresting reading that his HLA-DR CD3 positive cells were

> lessthan 1% "

>

> I back now and hope to contribute more to the board when i can give

> help/advise etc to others.

>

> Thaks for reading Pat

>

> This forum is open to parents and caregivers of children diagnosed

with a Primary Immune Deficiency. Opinions or medical advice stated

here are the sole responsibility of the poster and should not be

taken as professional advice.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

/messages

>

February 15, 2005

Jumping up and down!!! Yeah. I really do need to make time to go and check

out this site. I read a lot of referrals to its great information. Thanks

so much !!! I still have to do my LBWO in about an hours so I will

major kick butt and love it!! I recently changed my routine and have only

done 1 LBWO with the new exercises and I did not think that I could move the

next day. The most sore I have been, ever. When HIIT came around the next

day I did not think I could do it but I did it! I never realized how much

it would impact me to change things up that much. Boy am I learning a lot.

I love, love, love this group and could not have found the will power to

carry me like this group has. Now, I believe I am changing my way of

thinking and hence way of life. It is a good thing and a good feeling.

BTW, wasn't it you that recommended the Natures Best Choc. PP to me??? It

is delicious!!

Thanks for all-

-- Re: Question

-

totally normal!! Read Hussman's site about working hard, then fat

turning loose.. That's a GOOD SIGN!! It means you are going to be

losing it soon, real soon!!

EXCERPT FROM HUSSMAN:

Lastly, if you've been sedentary for a long time, your fat probably

hasn't seen an ounce of circulation since high school. This causes

your fat to turn thick and hard, or " blubbery " (yes, Scrabble fans,

that is a word). Marine animals have this sort of fat deposit,

called a " blubber lay " . When you start working out consistently,

some of you may find that your fat or cellulite becomes more like

Jell-O initially. In whales (forgive me - this is not personal),

increased activity also forces a change in circulation strategy so

that there is increased blood flow near the body's surface. I

suspect that this occurs in humans as well, so you may be a

little " pink " for even hours after a good workout.

http://www.hussman.org/fitness/#inside

CONGRATS!

> HI: I am in week #6 of C1. Feel good, eating good (not perfect)

but trying

> and learning everyday. I ABSOLUTELY can feel the muscle building

below this

> thick fat layer that I still have. I checked some measurements

this morning

> not my weight because I don't own a scale and really don't care

what it

> says. However, I did have it checked by the nutritionist who also

did my

> BF% prior to the challenge and it was 140 lbs.

>

> Okay, my thighs are up 1 inch (no problem, I read the posts about

getting

> bigger first), my stomach was down 1.5 inch (great, but that

really wasn't

> even a concern for me, maybe because I am so used to sucking it in

*grin*),

> and buttocks down 3/4 inch. With that said, when I was looking at

myself in

> the mirror this morning I noticed some dimpling areas in/on my

bottom. I

> had not seen this before unless I scrunched my butt muscles, know

what I

> mean, and then Yuck!! Why do you think I am just seeing them

now? Is is

> something to do with the way the fat is getting used up or maybe I

am

> putting on weight there? I highly doubt the latter because I do

notice a

> small change in the way my jeans fit in the bottom part of my

butt. Like

> the cheeks are moving up :0)

>

> Does that make sense? Anyone have any ideas on why this is

happening now?

>

> Thanks

>

February 15, 2005

Hi ,

I am glad you liked the NB Chocolate Protein Powder. I just had a

chocolate " milk " myself!

Take the time to go to Hussman's site. it's GREAT!!

> > HI: I am in week #6 of C1. Feel good, eating good (not

perfect)

> but trying

> > and learning everyday. I ABSOLUTELY can feel the muscle

building

> below this

> > thick fat layer that I still have. I checked some measurements

> this morning

> > not my weight because I don't own a scale and really don't care

> what it

> > says. However, I did have it checked by the nutritionist who

also

> did my

> > BF% prior to the challenge and it was 140 lbs.

> >

> > Okay, my thighs are up 1 inch (no problem, I read the posts

about

> getting

> > bigger first), my stomach was down 1.5 inch (great, but that

> really wasn't

> > even a concern for me, maybe because I am so used to sucking it

in

> *grin*),

> > and buttocks down 3/4 inch. With that said, when I was looking

at

> myself in

> > the mirror this morning I noticed some dimpling areas in/on my

> bottom. I

> > had not seen this before unless I scrunched my butt muscles,

know

> what I

> > mean, and then Yuck!! Why do you think I am just seeing them

> now? Is is

> > something to do with the way the fat is getting used up or maybe

I

> am

> > putting on weight there? I highly doubt the latter because I do

> notice a

> > small change in the way my jeans fit in the bottom part of my

> butt. Like

> > the cheeks are moving up :0)

> >

> > Does that make sense? Anyone have any ideas on why this is

> happening now?

> >

> > Thanks

> >

March 8, 2005

What works well with my son is the

now and then picture board. Having a picture of doing one task and

have the word NOW next to it and having a picture of doing the next

activity with the word THEN next to it.

Having as many pictures as you can possibly create with a variety of

descriptives, eating, play time, work time, math time, spelling,

handwriting, coloring etc.. and then having pictures of having free

time, walking, playing with putty, play dough, TV, computer, etc..

Having a now and then schedule helps to have a clear picture of what

he is doing (sometimes having a timer or a clear description of 5 minutes,

15 minutes etc of when he can look forward to the then activity.

My son does really well with structure and having a schedule to keep him

feeling safe and secure in his environment. Having the Now and Then

schedule has been helpful with introducing new activities, as well as

helping him calm himself on days that he is having a harder time organizing

and focusing with his daily schedule. Sometimes it can be environmental

factors, someone new in the environment,change in the routine, or on any

given day when he is feeling overhwhelmed, frustrated, and unable to

communicate.

Hope that helps.

Theresa ('s mom)

question

>

> We are having a problem with Tyler at school and I was wondering if

> anyone had any suggestions or if you have had the same problem. We

> are trying to get him to understand the concept of " First you _____,

> then you can ___ " . He is very insistent on what he wants and just

> usually doesn't get either one done. Like if he wants to ride

> his " cicle bike " as he calls his big wheel, but we are trying to get

> him to eat his supper first. We thought a picture schedule would

> help. They use one at school but still have this problem there, too.

> Any suggestions?

>

March 8, 2005

That was very helpful. Thank you. I will try this with him.

H.

If you think my hands are full, you should see my heart!

-- Re: question

What works well with my son is thenow and then picture board. Having a picture of doing one task and have the word NOW next to it and having a picture of doing the next activity with the word THEN next to it.Having as many pictures as you can possibly create with a variety of descriptives, eating, play time, work time, math time, spelling, handwriting, coloring etc.. and then having pictures of having free time, walking, playing with putty, play dough, TV, computer, etc..Having a now and then schedule helps to have a clear picture of what he is doing (sometimes having a timer or a clear description of 5 minutes, 15 minutes etc of when he can look forward to the then activity.My son does really well with structure and having a schedule to keep him feeling safe and secure in his environment. Having the Now and Then schedule has been helpful with introducing new activities, as well as helping him calm himself on days that he is having a harder time organizing and focusing with his daily schedule. Sometimes it can be environmental factors, someone new in the environment,change in the routine, or on any given day when he is feeling overhwhelmed, frustrated, and unable to communicate.Hope that helps.Theresa ('s mom) question>>> We are having a problem with Tyler at school and I was wondering if> anyone had any suggestions or if you have had the same problem. We> are trying to get him to understand the concept of "First you _____,> then you can ___". He is very insistent on what he wants and just> usually doesn't get either one done. Like if he wants to ride> his "cicle bike" as he calls his big wheel, but we are trying to get> him to eat his supper first. We thought a picture schedule would> help. They use one at school but still have this problem there, too.> Any suggestions?>>>>>>>>>

April 15, 2005

Gail,

I believe that you can get adhesive remover...Not sure where, maybe a pharmacy?

HRH

question

anyone have any tried and true (gentle) ways to remove tape residue from the skin? On me, I usually use alcohol, but doesn't like it. I just want to clean her up a bit.

Gail************************************************"A Creative Mess is Better Than Tidy Idleness" (author unknown) - "I must be the most creative person on earth!" - Gail Kimball

April 15, 2005

Hmmm, wonder if my scrapbook adhesive remover would work? LOL

Gail

question

anyone have any tried and true (gentle) ways to remove tape residue from the skin? On me, I usually use alcohol, but doesn't like it. I just want to clean her up a bit.

Gail************************************************"A Creative Mess is Better Than Tidy Idleness" (author unknown) - "I must be the most creative person on earth!" - Gail Kimball

April 15, 2005

Fingernail polish remover?

:0) Shellie"Gail M. Kimball" <gmkimball@...> wrote:

anyone have any tried and true (gentle) ways to remove tape residue from the skin? On me, I usually use alcohol, but doesn't like it. I just want to clean her up a bit.

Gail************************************************"A Creative Mess is Better Than Tidy Idleness" (author unknown) - "I must be the most creative person on earth!" - Gail Kimball__________________________________________________

April 16, 2005

> anyone have any tried and true (gentle) ways to remove tape residue

from the skin? On me, I usually use alcohol, but doesn't like it.

I just want to clean her up a bit.

> Gail

> ************************************************

> " A Creative Mess is Better Than Tidy Idleness " (author unknown) -

> " I must be the most creative person on earth! " - Gail Kimball

Hello Gail,

There is a product that you local pharmacist either has on self or can

order it for you. Tell him what you need it for (its mostly used for

surgical tape removal in hospitals) I have forgotten the name it may be

uni-solve or something like that. I used it on my daughter a few years

back to remove surgical tape from her leg and it worked so easily. I

too tried alcohol but this worked so much better. My cousin is a

pharmacist and recommended it.

good luck,

Flanders

April 18, 2005

Hi, I have recently started reading this message board and it helps

so much to know that we are not the only ones dealing with this

disorder. My son is 16, diagnosed with OCD over 5 years ago, he was

recently hospitalized for 8 days and he medication was changed at

that time. His main OCD obsession is with germs, however he has had

other issues throughout the years, (words stuck in his head, the need

to even things, checking, hoarding, etc), he can get stuck place

by " germ trails " , anyway . . . . my question . . . at times when he

has a bad situation that brings on OCD " rages " as I call them, he

seems to lose control emotionally, crying, raging etc and it can take

us quite awhile to calm him. Usually we have to hold him if possible

as he crys yells at us about how he hates this and wants it all to

end, etc. eventually he calms down and ends up taking a shower

(after we know that he is ok to be alone in the shower) and

afterwards he seems almost happy, like this releases some of the

tension for him. As you can imagine this is very frightening for the

rest of us and difficult to handle as he is 16 and getting quite

large. Does anyone else have this situation and do you have any

suggestions on what workds for you? He is in therapy and on

medication for OCD (Luvox and Anafranil)

Thanks

Lorrie

April 18, 2005

Hi Lorrie,

At one time would have his meltdowns (crying, hopelessness,

saying he'd NEVER get thru this - as in finish his OCD episode -

might hit himself in the head a few times, sometimes hit the bed or

whatever...) and this could take hours. Is your son like that or

does he also get physical in his rage?

I handled it pretty much like you, comforting if I could, trying to

support him thru it, etc. I would grab his arm when he hit himself,

telling him that wasn't allowed. Oh, and he'd sometimes look as if

he'd be pinching himself, I would calmly stop that too.

I can't say he was relieved when past all that, but very tired/worn

out. I'm sure he WAS relieved though.

I'm sure you all have talked about it - if he'll let you, that is -

but I would keep talking about what is/is not acceptable when he's

having a meltdown, perhaps brainstorming to find an acceptable

alternative if he needs to get a bit physical/strike out at

something. And of course be understanding that he's going through

this, supportive, etc. No overnight changes but hopefully with

reinforcing this through several " chats " he'll at some point begin

putting it (the alternatives) to practice.

I hope the med change works well and helps with this! Keep us

updated on how he & family are doing.

, 16, with OCD, dysgraphia and Aspergers

>

> Hi, I have recently started reading this message board and it helps

> so much to know that we are not the only ones dealing with this

> disorder. My son is 16, diagnosed with OCD over 5 years ago, he

was

> recently hospitalized for 8 days and he medication was changed at

> that time. His main OCD obsession is with germs, however he has

had

April 18, 2005

Lorrie:

Is this similar to what you experience?:

Last night my son (14) was flipping out over his sister who was resting her foot

on the stool as she did her homework. I'm sure he was thinking that her foot was

dirty. It was a clean sock and I had no problem with it. I told her to ignore

him, her foot was fine. He got progressively distraught to the point where he

was punching the coach, screaming into it etc. I kept telling him to forget it

and get on with his homework - then he'd have waves of upset over the foot, like

it was sheer agony. he ended up in his room tearing things apart. This lasted

about 20 minutes. At 10 p.m he asked me to read to him to help him calm down

enough to sleep.

Is this the sort of thing you experience?

We are stymied by this sort of thing. No idea how to handle it. Tried to talk

with him after the fact but he denies he's caused the problem; insists it was

sister's foot that was to blame.

What does your pdoc say?

kimz

re: question