Re:

[Guest guest]

Dear Martha,

Unfortunately, the IVIG replacement therapies available on the market today

do not have enough protective amounts of IgA in them (if they do, it is very,

very small amounts) and would not replace what your daughter is missing.

Some people with IgA deficiency can have reactions to IVIG that are

extremely life-threatening, it would be important for you to know about this

prior to use of IVIG. If you have not read the Patient and Family Handbook

For The Immune Deficiency Diseases you may want to get a copy from the IDF.

There is a strong presentation of allergies in IgA deficiencies. Some

patients benefit from immunotherapy (allergy shots) if they have the allergy

component. Allergies can cause the tissues in the respiratory tract to be

very susceptible to infections. Have they considered prophylactic antibiotic

therapy for your daughter? That might be an option as well. Good luck to

you.

Autumn (Mom to Mark Cd5-Cd19 PID and )

[Guest guest]

Hi Maurita,

Was very interested in your comment that some people with IgA deficiency

did well on IVIG. Our imm appointment is on the 25th -- will keep you posted

on what they say.

--Martha

[Guest guest]

Martha - IVIG would supplement the antibodies that she is not able to

produce but would not raise her IgA level. So there would be benefit from

IVIG therapy. She basically has two diagnosis, selective IgA deficiency and

selective antibody deficiency. Since she is IgA deficient you run the risk

of her reacting to the trace amounts of IgA that is in the IVIG. It's

kindof like a double edge sword. Gamimmune I believe is the product with

the least IgA in it and would probably be your best bet. Good luck with the

appointment.

Ursula Holleman uahollem@...

and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www.pedpid.com

/group/PedPID

[Guest guest]

In a message dated 9/9/00 9:13:12 AM Pacific Daylight Time,

K979@... writes:

<< No one had

mentioned " Selective Antibody Deficiency " to us. That would explain the

" poopy " results to the pneumonia vaccine.

Our pediatrician advised getting a Prevnar shot which I guess is a

different pneumonia vaccine in the way it works. Does anyone know if this

is

advisable for someone with IgA deficiency and " Selective Antibody

Deficiency " ? Thanks so much for your advice.

--Martha >>

Martha,

Our son has Selective Antibody Def. As you put it " poopy results to the

pnuemaccocal vacine. He had it twice. When I asked my doc what about the

Prevnar vac. He told me it wouldn't make a difference on the results. also

that was to old (10)

Because was doing so poorly the doc wanted to do a trial run on IVIG.

improved a great deal!! Before IVIG he had 6 surgeries in two years due

to sinus infections and septic hip caused by the sinus infection. Since IVIG

has not needed another surgery. He is not 100% well on IVIG as he

always has a stuffed noes, deals with headaches and fatigue but it has given

him a much better quality of life!!!

The doc has taken him off to see what would happen and within a week had

hot swollen joints and a major blockage of his sinus cavaties. has gone

off twice and this happen both times. The Doc has said needs to stay on

IVIG and he does not see at this time going off anytime soon. has

been on IVIG for three years now.

I am very thankful the doc tried IVIG even tho s IG levels were normal

again, s Def is with the pnuemaccocal. He has littlte to no response.

Ask your doc if he would try a trial run for three months to see how he does.

Then base his descision. Thankfully our insurance said ok

le

10 IVIG for three years, Selective Antibody Def, Syringomyelia

[Guest guest]

:

Does Autumn make antibodies to polysaccharides? She's older than so you

have more experience than I... have you been hopeful that this is transient

and now you're getting sceptical? Because I don't think I want to hold out

hope and then have it dashed -- that's happened a few times already this year

with different tests. Do I understand that Autumn's numbers are trending

down? Because I don't see HOW that could be a sign it's getting better.

's same way, her #s at 13 mo lower than at 6 mo... I know that's not

much to go on yet but we'll have new #s in two months.

Just another thought -- what kinds of allergies does she have? The reason I

ask is because when I was in college and a smoker, I developed allergies to

dust, animal dander, dust mites, etc. During the time I was having allergies,

I had NINE sinus infections in one year. Had never had them before. Stopped

smoking, allergies went away within a year and never had a sinus infection

again. I'm not saying Autumn should quit smoking (!), but I'm saying could

her allergies make her more susceptible to infection? Just a thought.

(mom to , age 2, antibody def, IgA, IgM, IgG & subclass def - not

on IGIV yet)

[Guest guest]

,

As far as the polysaccharides, I'm not sure. I'll have to look back

over some of the tests we have done to refresh my memory. I'll look

into it & let you know.

Autumn's allergies are mesquite trees, Russian thistle (tumbleweeds),

cladysporium molds, and dust mites. Actually, the dust mites were

extremely mild compared to the control & other reactions. She was

negative for cats, dogs, roaches, etc.

We have a non-smoking home & strictly enforce it. My husband is a

smoker, but hopefully he will quit soon. It stays in his clothes &

everything. It doesn't seem to bother Autumn at all though. The

doctor thought that it might in the end, but right now, as long as

the home is non-smoking we're allright.

I don't know if her deficiency is transient or not. The drs tell me

it is, but I just don't know if I can trust that. The trend is

definitely downward on the IgG's & her subclasses seem to get worse

all the time. I think until we have more information to warrant

another immunologist consult, the ped & I will just retest her levels

every 4-6 months. The ped thinks if she can stay well for 4-6

months, maybe her levels will come back up. He also told me the

other day he's seen significant progress since we returned to Denver

(only 3 office visits in 1 month--and the infection cleared up on

oral antibiotics) so he's hopeful. Still, I can't help but

wonder. . .

Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def.,

asthma, chronic sinusitis, and allergies), and Duncan Avery due

5/17/01

[Guest guest]

Wow, I'm sort of surprised they haven't tested all that stuff. I mean, even

though under-two's don't respond well to polysaccharides, they're SUPPOSED to

respond to the Prevnar, which is a polysaccharide/protein conjugate.

Here's another example of the differing opinions of the docs. But did they

check your kids' IgG levels? I assume so since you know they're IgA def. I'm

just wondering if we have TOO much info on too soon, you know, getting

all upset about something when she still has growing to do.

Oh this is all so frustrating.

(mom to , age 2, antibody def, IgA, IgM, IgG def - not on IGIV yet)

[Guest guest]

:

was 6 weeks early, though she tried to come 10 weeks early. I had a 10%

abrupted placenta, almost certainly from a car accident at 18 weeks

gestation. I had a few weeks bedrest in there, then perm. bedrest at 29 wks

but Christmas Day (30 wks) she tried to make her appearance. Got labor

stopped with plain ole IV fluids then a gallon of water a day until my water

broke at 34 wks (it was probably flooded!).

Anyway, they delayed her first vaccinations BECAUSE she was preemie, so I'm

glad of that. BUT it didn't seem to help her! I also know of no one with

immune problems, though there is a distant relative of long ago they always

refer to as " poor little Emma " , who was sick all the time and finally died of

something. When I was picking baby names I actually hesitated on my favorite

name, , because of " poor little Emma " , and look what happened! ;0)

What kind of meningitis has had? had pneumococcal, and there have

been two subsequent occasions where we thought she had it again (she didn't)

and about had heart attacks over it. But you actually lived that -- how awful.

How old are your kids now?

(mom to , age 2, antibody def, IgA, IgM, IgG def - not on IGIV yet)

[Guest guest]

's T-cell count are low and the only vaccine that took somewhat is the HIB.

She hasn't had an MMR since before she was 12 months. Because of her low white

cell count. Also her anti-A is low and anti B is ok

Ray wrote:

,

When we went to NJH, they stated that Autumn's problem was transient and

would improve. Autumn's B cells are low, but her T cells are normal. She

also shows some response to vaccines like diptheria, tetnus, & HIB. Her

immuno numbers remain low & seem to be getting lower all the time.

I can't help but wonder if Autumn will be one of those kids whose numbers do

come up but continue to get sick. These are the kids that don't " qualify "

for IVIG because the tests don't warrant it. What do we do then? Just live

with the constant illnesses with no hope of relief?

Just a few questions I've been asking myself lately.

Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma,

chronic sinusitis, and alleriges), and Duncan Avery due on 5/17/01

[Guest guest]

Thank you Helen, I think he is dreaming about it because he wakes so scared.

carol mother to josh cvidAt 01:01 PM 2/19/01 -0500, you wrote:

>Carol,

>Around the same age and again at 11 Matt asked me the same question. I think

>now he is to the point were he no longer asks but wonders. I know this

>probubly does not help and I am sorry you had to have that conversation.

>Helen

>

>

>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.

Shop online without a credit card

http://www.rocketcash.com

RocketCash, a NetZero subsidiary

[Guest guest]

Thanks you linda. I do know that josh is smart and knows more about

medicines and hospitals then he should.

carolt 01:17 PM 2/19/01 -0500, you wrote:

>Carol: has asked us almost the same question as Josh asked you and it

>always seems to tear a larger hole in my soul each time I hear it. I know

>how hard it is to talk about chronic illnesses with a six year old and then

>wonder how much of it they actually absorbed. We have always told

>from the start that there are bad illnesses that can take someone we love

>away, but that it doesn't mean that that person is bad or that his illness

>WILL take him away from us. One thing that tells me is that the

>medicines--mainly the IVIG--keeps him from being sicker and that he has to

>think of it like that. Pretty smart for an 8 year-old, but so many kids who

>have major illnesses are more grown-up than we sometimes give them credit

>for! I think it's ok to let your children see you cry about things like

>this. I'll be thinking of you both and if you need to talk, contact me at

>alansway@...

>and I'll get back to you as soon as I can.

>

>

>

>

>

>

> > Hell-o everyone. Josh pagleys mom carol here. well josh has been sick for

> > three weeks now. He has went from his throat to his sinus to

> > his stomach. He had ivig on the 6th of feb. he saw his immune doc

> > last week and he want's us to start his iv's at home and for us to think

> > about going to every three weeks on 10grams. He is six and last night woke

> > at midnight or so and ask me to tell him when he was

> > going to die. He has been sick sense birth and has had a lot of problems.

>I

> > told him nobody knows when someone is going to die but he insisted that i

> > knew or the doctors knew or i learned in school all this information. I

> > told him i did not know and that he just needed to take care of him self

> > and he would be alright. Of course we are both crying at this time so I do

> > not know how convincing i really was. I never thought my child would be

> > asking me how long he had to live and how sick is he. Well that is that

>had

> > to get it off my chest. Hope everyone is doing ok. carol mother to josh

> > Cvid,steroid dep,

> > gerd,heart,growth def,intestinal problems, ulsers, and more.

> >

> >

> > Shop online without a credit card

> > http://www.rocketcash.com

> > RocketCash, a NetZero subsidiary

> >

> >

> > 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.

> >

>

>

>

>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.

Shop online without a credit card

http://www.rocketcash.com

RocketCash, a NetZero subsidiary

[Guest guest]

, I know your daughter is a bit older than mine, but thought I'd share.

We seem to have made great strides conquering 's fear of the doctor

through the use of a play medical kit, which she uses on us or stuffed

animals, and with which we " practice " with her. Maybe books would help you

too, but the one that worked wonders with might be too babyish for a

five year old: " Corduroy Goes to the Doctor " (found it on Amazon.com).

We read the book a lot (I embellished with stuff particular to her own

doctor's office so it sounded like Corduroy goes to the same doc), worked

with the toy medical kit for a while, and the final thing that helped was

giving her some control over the procedures. For example, she used to be

terrified of the otoscope going in her ear, we had to hold her down while she

thrashed like a wild animal (same with looking at her throat). But after the

book and play practice, we now allow her to stand on her own during the

procedures and she holds perfectly still!!! Not holding her down forcibly

seems to be the key I guess.

I also start talking about where we are going as soon as we get in the car

but not beforehand, explaining what I think will happen and if I'm absolutely

SURE there aren't going to be any " owies " I say that, but I don't promise if

I don't know. It seemed to give her some comfort to bring her " own " play

stethoscope with her, too!

This does not yet work for sticks of course, I mean, there are some things

that can't help but be painful and scary. But this new calmness over the

simpler procedures has helped all of us enormously!

(mom to , age 2, antibody def, IgA, IgM, IgG def - not on IGIV yet)

[Guest guest]

> ps. I ask for prayers today. My hubby of 35 years was having discomfort on

> Friday evening..had the indigestion, some stomach discomfort....alka seltzer

> quieted it (aspirin) some, but he has continued to be nervous and apprehensive

> and not feeling up to par. I just called the cardio doc and they will see him

> at 2 today. It has been 2 years almost to the month since his bypass.....and

> in all honesty what have we changed in the two years? He is still type A but

> not quite as bad, he still gets very stressed at his job,

Do you have any martial arts schools around? The right one can be a great

outlet for stress.

Yours In Liberty, - Colorado, U.S.A.

Member Libertarian Party USA and LPCO

http://melissasliberty.blogspot.com/

FREE PLANET EARTH NOW!:

http://www.PlanetaryBillOfRights.org/

JOBS: http://planetarybillofrights.org/jobs.htm

Aerobic Self Defense Clubs of America

http://groups.yahoo.com/group/Aerobic_Self_Defense_Clubs_Ameri

ca/

http://www.AerobicSelfDefenseClubsOfAmerica.com/

[Guest guest]

I especially like breathing techniques. They can be done anywhere, any time,

and don't require any extra equipment.

You can search the Internet for some wonderful techniques. Search for

" breathing exercises " or alternately " pranayama " .

Also Weil's Audiobook, Breathing, the Master Key to Self Healing, is

an excellent resource.

Some meditation techniques can also be useful, though less so in public

settings. While I have not read the book yet, Mark Thorton's book,

Meditation in a New York Minute, offers multiple meditation techniques that

can be done quickly (in one minute) anywhere you ar at - even in traffic.

A lot of people like to exercise through the stress, but I do not. Stress is

already putting strain on the heart, so any hard aerobic exercise is just

going to put more strain on it. If you would like to exercise through it,

find a slow moving exercise, like tai chi or a non-aerobic yoga class - one

where you hold the positions for extended periods rather than moving from

one to the next quickly in effort to increase the heart rate. Most fitness

club yoga classes are aerobic yoga.

Music, spending time in nature, doing something creative/artistic - these

are all other ways to reduce or eliminate stress in your body. Additionally,

they are great techniques for getting your mind off food.

Randy

On Fri, Sep 26, 2008 at 10:22 PM, Marguerite wrote:

> I was wondering if anyone out there had any stress management

> techniques that they find easy and effective? My job has the potential

> to be incredibly stressful, sometimes I thrive on it, I love the

> challenge, I like being busy and getting things done and it feels

> stressful in a good way. Other times I am not nearly so lucky and it

> feels terrible. I am definitely a stress eater and while I am getting

> better at recognizing it, I am still having a difficult time finding

> better ways to cope. As a recent graduate RN I know that stress will

> always be there and that I will have to find better methods of stress

> reduction... Does anyone have any advice? Thanks!!! Marguerite

>

>

>

>

[Guest guest]

When I find myself really stressed, be it at work, home or on the freeway, I

take a few deep breaths slowly in and out and every outward breath I allow

myself to relax. It sounds easy, but you have to remember that 'making'

yourself relax is work, not relaxation, so you 'allow' it to happen. Try it

at home, first by tensing your muscles all over, then breathing long and

slow and each exhale feel your muscles relax... as you do it, it gets

easier and easier until you can do little 'mini meditations' wherever you

are. Usually, I find my jaw, neck and shoulders hold a lot of tension so as

I am breathing out, mentally, I am at those places first... breathing is

something we take for granted, but it is also an incredible tool to align

the mind, body and emotion. You might consider a few sessions with a

hypnotherapist to give you a jumpstart. Otherwise, practice practice

practice! (but don't try to force it!) lol it's the easiest thing in the

world... relaxation is doing nothing!

oxoxox

WW

On Fri, Sep 26, 2008 at 8:22 PM, Marguerite wrote:

> I was wondering if anyone out there had any stress management

> techniques that they find easy and effective? My job has the potential

> to be incredibly stressful, sometimes I thrive on it, I love the

> challenge, I like being busy and getting things done and it feels

> stressful in a good way. Other times I am not nearly so lucky and it

> feels terrible. I am definitely a stress eater and while I am getting

> better at recognizing it, I am still having a difficult time finding

> better ways to cope. As a recent graduate RN I know that stress will

> always be there and that I will have to find better methods of stress

> reduction... Does anyone have any advice? Thanks!!! Marguerite

>

>

>

>

[Guest guest]

>

> ,

>

>

>

> You know what to do. Pick yourself up, toss off those covers and

keep up

> your good work. I've easily gone from 140 something to 123 as of

this

> morning without feeling deprived because of you. My gastric -by-

pass doc

> said he's never seen anyone lose as much fat as I did. He's

thrilled. Those

> last twenty pounds. They came off so easily. I had my by-pass 10

years ago.

> So, it was me, with your guidance. That's the only difference. I'm

now

> eating when I'm hungry and finishing when I'm full. I'm not upset

and

> obsessed with food anymore.

>

>

>

> Life handed you a hurdle. A time of re-thinking. Maybe a wake-up

call. It's

> easy to get caught up in the good and forget that none of us know

it all.

> Not that I think you believed that, but it's human nature to fall

into the

> category of expert and forget that there are many keys and tools

and we can

> never stop learning. Again, not that you were not learning, but

your path,

> your journey, this hour of humility will make you more assessable

to people.

> I never have as many readers of my blog as when I talk twice yearly

about my

> depression. I'm dead honest about it. Just be honest with those who

love

> you. Those who step away have shown their loyalty and lack of love

and you

> need to remember that when you're on the top of the world again and

they

> want back in.

>

>

>

> I have nothing, but respect and honor for you. You've been a

guiding light

> to me. If you only ever touched me, and I am just the beginning of

the tippy

> tip of the people you've helped, then your work is worth it.

>

>

>

> Many hugs,

>

>

>

> .

>

>

>

> It's all sassy fabulous: <http://blog.liedel.org/> Blog.liedel.org

>

>

>

>

>

>

>

>

[Guest guest]

Here is the name of the cream we use for our sons eczema.

ERYTH2% IN BETADERM 0.05% onitment compond

This stuff has really helped.

[infantile_scoliosi s] SLC TshirtTo: infantile_scoliosis @yahoogroups. comDate: Saturday, July 18, 2009, 6:42 AM

We have been removing this T-shirt for the last 3 casts once a week and washing and putting it back on. The last cast change my sons skin was perfect no dry skin and he looked like the day it was put on. He also was very clean and no smell. This maybe is not a good idea for some but it has been very good for us.I told our doctor that we have been doing this every week for the 3 month duration and will continue to do so. His responce to me was the French doctors do this all the time with their patients but he could'nt figure out how. Well I showed him and he thought it was great and also gave me an extra one so now I take it off and put a clean one back on once a week. If you are able to floss and move the t-shirt throughout the cast then taking it off is not that hard it takes me about 5 minutes to take it off and 5 minutes to put it back on. My son loves to be flossed so for us its a no brainer. Washing the T-shirt is almost like giving him a total bath once a week. Sure beats having the same one on for 3 months. For those that go to SLC you should ask your doctor about this. For us it has really helped with his skin and keeping him clean.Your doc maybe more open to this than you think.

[Guest guest]

Could you please invite Carol Thelen to join. Her e-mail address is thelen.carol@...

Thanks!

____________________________________________________________

Shop save on the supplements you want. Click now!

[Guest guest]

I think also you should state that because YOU are ISOP and CAST that this is your personal opinion. I do not hide behind anything, if its my opinion I like to think that people know its just me!!! Like everyone from this group every post is their opinions thats it simple as that!

Also understand that when I posted about this before "SLC t-shirt" so that people would understand that this is where my son is casted.

I would also like you to understand that MY Son's Doctor knows exactly what I am doing. He never told me its wrong and dont do it but instead gave me a spare t-shirt so I could put a clean one back on.

I would also ask you does ISOP endorse "FLOSSING" ?

I have never heard ISOP say that this is bad ever. Maybe because it was'nt my idea and You did not want to offend a MOM from this site? There is little difference between Flossing and removal. But instead ISOP suggests that you take an alcohol laced nylon and stuff it down the cast. Sorry but I would not put any foriegn object down inside my sons cast!!!

Also understand that other parents are also doing this that are NOT being treated in SLC but also have a t-shirt under their childs cast. But because they mentioned it on this group and were alienated from the group do not post here anymore. But they still send me private emails.

If you like as the moderator of this group you may suggest that "I" put a disclaimer on every post I write to this group if thats what you like I can certainly do that.

Darrell

[infantile_scoliosi s] Re: t-shirt removal> > > > Krista,> Of course is an expert in cast care and I respect all that she has done (I wouldn't come here if I didn't). However, I am an expert in my child and what my abilities are (under the guidance and approval of our Dr. who ultimately has the final say). I have read here several times about "skin breakdown" and to tell you the honest truth I don't even know what that means?!!? Logan has never had that problem or any problem with his skin. Maybe it's because he's five years old, I don't know, but his skin looks fresh and clean between casts and I truely believe it's because I change his shirt. I know the idea of it seems overwhelming to some people but for me, it's very simple to get on and off and he LOVES when I do it. When we done there are absolutely no bumps in the shirt anywhere. It's possible that it's easier for us since he has an underarm cast but again, I am sharing the experience with our child. The first time I actually tried it we we > Sherry> Mom to Logan, Age 5> Currently in 3rd cast from Erie Shriners> > > Sherry,> > I have to share that as the Moderator/Head of this website and CAST group...she () really does have the most experience is what the recommendations are for cast care. I now that from time to time this issue with the t-shirt gets brought up and there are parents that chime in suggesting exactly what you have shared....BUT I have to share that my son had a MAJOR GI bug...with vomiting, diarrhea the whole works....sooo bad that he was hospitalized. The vomit was everywhere the shirt reeked of it...but I never even thought about taking it off. The idea that this could even possibly cause a skin break- down was enough for me to live with the smell. I think that parents should know that this is a real possibility. I would rather have a lil "Pig Pen" child then deal with any skin break down or sores. Just not worth it!> > > > ~Krista> > Jack's Mom, Jack is 25 months old, in his 1st brace> > Jack started casting at 41 degrees and is now measuring 0 in his brace!!! > > Receiving care from Shriners Hospital in Salt Lake City, Utah>

[Guest guest]

Can I ask what exactly flossing is. I have heard it mentioned but don't know

exactly what people are referring to. Is this something that should be being

done?

Thanks,

Jenn

Cole's Mommy. 19 months, 2nd cast from Rochester, 23 degrees down from 47

> >

> >

> > From: Darrell McMow <dmcmowshaw (DOT) ca>

> > Subject: Re: [infantile_scoliosi s] Re: t-shirt removal

> > To: infantile_scoliosis @yahoogroups. com

> > Date: Friday, August 21, 2009, 10:14 PM

> >

> >

> >

> > Sherry

> >

> > We also remove my son's T-shirt once a week and put a clean one back on

him.

> > The thing with it is its so easy to do. It takes me less then 10 minutes

to take it off and put a clean one back on. I have discussed this with my son's

Dr. in SLC and he was all for it and told me that the french Dr.s do this all

the time. The last cast change they even gave me an extra T shirt so I have been

doing this for 8 months never had a problem. Our Dr. did not discourage me from

doing this at all but encouraged me to continue doing it. When his cast comes

off now we have NO dry skin NO skin irritations and its like he's absolutely

clean. I cant say that for any cast we have had before that. We always had some

problems before so yes I will continue to remove and replace the tshirt. The

thing with it is when his cast is removed now he does'nt even sratch himself. So

is it so wrong to continue to do something that works so well.

> >

> > If I went by what everyone thinks should be the rules of cast care we

still would be at square one. After 12 casts I think I know whats right or wrong

in my son's care. I would rather think outside of the box rather than being

stuck inside of it.

> >

> > I trim problem spots myself.

> > I use neoprene to petal my sons cast this allows us to be more liberal

with water and water play. Because the outside of his cast is water resistant. I

actually wash the outside of the cast with soap and water.

> > I remove the t-shirt and put a clean one back on never had a problem doing

this.

> > We go to the park and yes he plays in the sand.

> > He takes a shower with me twice a week with his shower vest.

> > I take him swimming to the pool 2 times a week with his drysuit. We

actually do PT in the pool.

> >

> > I also have a few more things that I will be doing at the end of this cast

and onto the next cast. But I know for us cast life is just getting easier with

each one.

> > For us this is just normal cast life. Always thinking outside the BOX.

> >

> > And yes my son has an over the shoulder cast!

> > My son's DR has never said anything to me that the things I do are wrong

ever.

> >

> > So these are just my experiences with cast life and the things I do for my

son.

> > I do the things that I think are right for us. If you dont want to try new

things dont. If you are unsure then dont do it. But also know that there are

other options you can try!

> >

> > Darrell

> >

> >

> >

> >

> >

> >

> >

> > [infantile_scoliosi s] Re: t-shirt removal

> >

> >

> >

> > Krista,

> > Of course is an expert in cast care and I respect all that she has

done (I wouldn't come here if I didn't). However, I am an expert in my child and

what my abilities are (under the guidance and approval of our Dr. who ultimately

has the final say). I have read here several times about " skin breakdown " and to

tell you the honest truth I don't even know what that means?!!? Logan has never

had that problem or any problem with his skin. Maybe it's because he's five

years old, I don't know, but his skin looks fresh and clean between casts and I

truely believe it's because I change his shirt. I know the idea of it seems

overwhelming to some people but for me, it's very simple to get on and off and

he LOVES when I do it. When we done there are absolutely no bumps in the shirt

anywhere. It's possible that it's easier for us since he has an underarm cast

but again, I am sharing the experience with our child. The first time I actually

tried it we we > Sherry

> > Mom to Logan, Age 5

> > Currently in 3rd cast from Erie Shriners

> >

> > > Sherry,

> > > I have to share that as the Moderator/Head of this website and CAST

group...she () really does have the most experience is what the

recommendations are for cast care. I now that from time to time this issue with

the t-shirt gets brought up and there are parents that chime in suggesting

exactly what you have shared....BUT I have to share that my son had a MAJOR GI

bug...with vomiting, diarrhea the whole works....sooo bad that he was

hospitalized. The vomit was everywhere the shirt reeked of it...but I never even

thought about taking it off. The idea that this could even possibly cause a skin

break- down was enough for me to live with the smell. I think that parents

should know that this is a real possibility. I would rather have a lil " Pig Pen "

child then deal with any skin break down or sores. Just not worth it!

> > >

> > > ~Krista

> > > Jack's Mom, Jack is 25 months old, in his 1st brace

> > > Jack started casting at 41 degrees and is now measuring 0 in his

brace!!!

> > > Receiving care from Shriners Hospital in Salt Lake City, Utah

> >

>

[Guest guest]

Thanks for asking that Jenn, because I am wondering the same thing

Joanmom to Hayden 2 1/262 degreesTreated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Tuesday, August 25, 2009 7:15:49 AMSubject: Re:

Can I ask what exactly flossing is. I have heard it mentioned but don't know exactly what people are referring to. Is this something that should be being done?Thanks,Jenn Cole's Mommy. 19 months, 2nd cast from Rochester, 23 degrees down from 47> > > > > > From: Darrell McMow <dmcmowshaw (DOT) ca>> > Subject: Re: [infantile_scoliosi s] Re: t-shirt removal> > To: infantile_scoliosis @yahoogroups.

com> > Date: Friday, August 21, 2009, 10:14 PM> > > > > > > > Sherry> > > > We also remove my son's T-shirt once a week and put a clean one back on him. > > The thing with it is its so easy to do. It takes me less then 10 minutes to take it off and put a clean one back on. I have discussed this with my son's Dr. in SLC and he was all for it and told me that the french Dr.s do this all the time. The last cast change they even gave me an extra T shirt so I have been doing this for 8 months never had a problem. Our Dr. did not discourage me from doing this at all but encouraged me to continue doing it. When his cast comes off now we have NO dry skin NO skin irritations and its like he's absolutely clean. I cant say that for any cast we have had before that. We always had some problems before so yes I will continue to remove and replace the tshirt. The thing with it is when his

cast is removed now he does'nt even sratch himself. So is it so wrong to continue to do something that works so well.> > > > If I went by what everyone thinks should be the rules of cast care we still would be at square one. After 12 casts I think I know whats right or wrong in my son's care. I would rather think outside of the box rather than being stuck inside of it.> > > > I trim problem spots myself.> > I use neoprene to petal my sons cast this allows us to be more liberal with water and water play. Because the outside of his cast is water resistant. I actually wash the outside of the cast with soap and water.> > I remove the t-shirt and put a clean one back on never had a problem doing this.> > We go to the park and yes he plays in the sand. > > He takes a shower with me twice a week with his shower vest.> > I take him swimming to the pool 2 times a week with

his drysuit. We actually do PT in the pool.> > > > I also have a few more things that I will be doing at the end of this cast and onto the next cast. But I know for us cast life is just getting easier with each one.> > For us this is just normal cast life. Always thinking outside the BOX. > > > > And yes my son has an over the shoulder cast!> > My son's DR has never said anything to me that the things I do are wrong ever.> > > > So these are just my experiences with cast life and the things I do for my son.> > I do the things that I think are right for us. If you dont want to try new things dont. If you are unsure then dont do it. But also know that there are other options you can try!> > > > Darrell > > > > > > > > > > > > > > > > [infantile_scoliosi s] Re: t-shirt removal> > > > > > > > Krista,> > Of course is an expert in cast care and I respect all that she has done (I wouldn't come here if I didn't). However, I am an expert in my child and what my abilities are (under the guidance and approval of our Dr. who ultimately has the final say). I have read here several times about "skin breakdown" and to tell you the honest truth I don't even know what that means?!!? Logan has never had that problem or any problem with his skin. Maybe it's because he's five years old, I don't know, but his skin looks fresh and clean between casts and I truely believe it's because I change his shirt. I know the idea of it seems overwhelming to some people but for me, it's very

simple to get on and off and he LOVES when I do it. When we done there are absolutely no bumps in the shirt anywhere. It's possible that it's easier for us since he has an underarm cast but again, I am sharing the experience with our child. The first time I actually tried it we we > Sherry> > Mom to Logan, Age 5> > Currently in 3rd cast from Erie Shriners> > > > > Sherry,> > > I have to share that as the Moderator/Head of this website and CAST group...she () really does have the most experience is what the recommendations are for cast care. I now that from time to time this issue with the t-shirt gets brought up and there are parents that chime in suggesting exactly what you have shared....BUT I have to share that my son had a MAJOR GI bug...with vomiting, diarrhea the whole works....sooo bad that he was hospitalized. The vomit was everywhere the shirt reeked of it...but I never even

thought about taking it off. The idea that this could even possibly cause a skin break- down was enough for me to live with the smell. I think that parents should know that this is a real possibility. I would rather have a lil "Pig Pen" child then deal with any skin break down or sores. Just not worth it!> > > > > > ~Krista> > > Jack's Mom, Jack is 25 months old, in his 1st brace> > > Jack started casting at 41 degrees and is now measuring 0 in his brace!!! > > > Receiving care from Shriners Hospital in Salt Lake City, Utah> >>

[Guest guest]

Sorry Krista

Yes my posts as of late have been out of line.

I will not use any sting or bite to any of my posts ever again. I am very sorry to have made you uncomfortable or anyone from this group.

This is not an excus for my behavior as of late.

Sometimes I just so angry that we are still living the cast life. I so want my Boy to be free from this. But I know the only other option so I guess we go on. I still beat myself up for waiting so long I blame myself. So most of the time I have this guilt that this is my fault. When the day comes that he will have to have surgery, if that day comes, I will only blame myself.

Yes I try to be the best father to my son so I do everything with him. Throughout all this we have a special bond.

As far as the T goes they never would have said it to you because I talked to the Dr. about it after you left. To tell you the truth if a Mom from this site never mentioned that she wanted to try I never would have.

When I did it and then got it back on it really surprised me. It just progressed to doing it everyweek. To tell you the truth I wish I had known in the first cast I would have did it then. But yes I am a little more adventurist then most. Sorry thats just me.

Darrell

[infantile_scoliosi s] Re: t-shirt removal> > > > Krista,> Of course is an expert in cast care and I respect all that she has done (I wouldn't come here if I didn't). However, I am an expert in my child and what my abilities are (under the guidance and approval of our Dr. who ultimately has the final say). I have read here several times about "skin breakdown" and to tell you the honest truth I don't even know what that means?!!? Logan has never had that problem or any problem with his skin. Maybe it's because he's five years old, I don't know, but his skin looks fresh and clean between casts and I truely believe it's because I change his shirt. I know the idea of it seems overwhelming to some people but for me, it's very simple to get on and off and he LOVES when I do it. When we done there are absolutely no bumps in the shirt anywhere. It's possible that it's easier for us since he has an underarm cast but again, I am sharing the experience with our child. The first time I actually tried it we we > Sherry> Mom to Logan, Age 5> Currently in 3rd cast from Erie Shriners> > > Sherry,> > I have to share that as the Moderator/Head of this website and CAST group...she () really does have the most experience is what the recommendations are for cast care. I now that from time to time this issue with the t-shirt gets brought up and there are parents that chime in suggesting exactly what you have shared....BUT I have to share that my son had a MAJOR GI bug...with vomiting, diarrhea the whole works....sooo bad that he was hospitalized. The vomit was everywhere the shirt reeked of it...but I never even thought about taking it off. The idea that this could even possibly cause a skin break- down was enough for me to live with the smell. I think that parents should know that this is a real possibility. I would rather have a lil "Pig Pen" child then deal with any skin break down or sores. Just not worth it!> > > > ~Krista> > Jack's Mom, Jack is 25 months old, in his 1st brace> > Jack started casting at 41 degrees and is now measuring 0 in his brace!!! > > Receiving care from Shriners Hospital in Salt Lake City, Utah>

[Guest guest]

Hi ,

Where are you located? You mentioned the Mayo so I'm assuming you're somewhere in or near MN. I'm in Minneapolis. I checked into the Mayo, Gillette and Shriners a couple of years ago when my son needed casting. None of the hospitals in MN were performing the casting technique that I wanted. The closest hospital was Shriner's in Chicago. I believe that is still the case. We ended up only going to Shriner's Chicago for a consult as the casting doc was out for a few months when Noah needed his cast. So we ended up traveling to Salt Lake City for our casts.

I know that the Shriner's in Minneapolis is hoping to begin casting soon, but last I heard they still did not have a table. I've been meaning to email the nurse there to see how far along they are in the process of acquiring one.

If you're not happy with the Mayo - I would suggest seeking out other opinions. Let me know if I can be of anymore help.~Noah 4 years old9 months of casting in SLC; Currently on 1 1/2 years of bracingAnd Mariella 7 months old currently waiting and watching at 11*

To: infantile_scoliosis From: carriedonahoe@...Date: Tue, 15 Sep 2009 14:49:28 +0000Subject: Re: Isabella's next cast

Hello everyone my name is and my son Tucker has scoliosis and is in his 2nd cast so was just kinda putting this out there cuz interested to hear how other parents and children have coped with all this! We have been going to Mayo but I don't feel like they have done the best job that they could for him. Was just kinda interested to see if anyone would have recent pictures of there childrens casts for me to see

Sent via BlackBerry from T-Mobile

From: Patty Bowen Date: Tue, 15 Sep 2009 06:07:58 -0700 (PDT)To: <infantile_scoliosis >Subject: Re: Isabella's next cast

I'll be sure to do that and good luck with the casting on Monday. I'll be thinking of you!

Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & Evan

From: Joan Vallee <hayro1611>To: infantile_scoliosis Sent: Tuesday, September 15, 2009 8:21:28 AMSubject: Re: Isabella's next cast

Good luck to you and Isabella. I totally understand. I have to tell my 9 year old to wash her hands after school and after she plays with friends. Our first cast is next monday. Let us know how it goes Friday. Joanmom to Hayden 2 1/262 degreesTreated at ish Rite Hospital Dallas, TX

From: Patty Bowen <bowenpattyyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Monday, September 14, 2009 11:34:13 PMSubject: [infantile_scoliosi s] Isabella's next cast

Hi everyone! Please throw prayers my way that Isabella doesn't get sick before her 2nd cast this Friday. My boys bring a virus of some sort home every few weeks from school and I've been driving them crazy yelling at them to keep their hands away from their faces. Yes, I'm a little neurotic right now. I just really want this to happen because I need to know if it's helping her at all. If she stays healthy, we will leave Thursday am and have her cast removed that day and the 2nd cast done on Friday. Anyone else going to be at Rochester those 2 days?

Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & Evan

________________________________________________ __

[Guest guest]

Christana. Well thanx so much! Mayo does have the table but I just don't feel that they do it correctly b/c he gets sick everytime he has one on and last time he got pneumonia and upper respitory infections through the 3 months! Did ur son totally lose his appetite when he had his first cast put on? My son did and still to this day he will not eat any food he will only drink from a bottle. Sent via BlackBerry from T-MobileFrom: Borlik Date: Tue, 15 Sep 2009 12:48:55 -0500To: <infantile_scoliosis >Subject: RE: Hi , Where are you located? You mentioned the Mayo so I'm assuming you're somewhere in or near MN. I'm in Minneapolis. I checked into the Mayo, Gillette and Shriners a couple of years ago when my son needed casting. None of the hospitals in MN were performing the casting technique that I wanted. The closest hospital was Shriner's in Chicago. I believe that is still the case. We ended up only going to Shriner's Chicago for a consult as the casting doc was out for a few months when Noah needed his cast. So we ended up traveling to Salt Lake City for our casts. I know that the Shriner's in Minneapolis is hoping to begin casting soon, but last I heard they still did not have a table. I've been meaning to email the nurse there to see how far along they are in the process of acquiring one. If you're not happy with the Mayo - I would suggest seeking out other opinions. Let me know if I can be of anymore help.~Noah 4 years old9 months of casting in SLC; Currently on 1 1/2 years of bracingAnd Mariella 7 months old currently waiting and watching at 11* To: infantile_scoliosis From: carriedonahoeymailDate: Tue, 15 Sep 2009 14:49:28 +0000Subject: Re: Isabella's next cast Hello everyone my name is and my son Tucker has scoliosis and is in his 2nd cast so was just kinda putting this out there cuz interested to hear how other parents and children have coped with all this! We have been going to Mayo but I don't feel like they have done the best job that they could for him. Was just kinda interested to see if anyone would have recent pictures of there childrens casts for me to seeSent via BlackBerry from T-Mobile From: Patty Bowen Date: Tue, 15 Sep 2009 06:07:58 -0700 (PDT)To: <infantile_scoliosis >Subject: Re: Isabella's next cast I'll be sure to do that and good luck with the casting on Monday. I'll be thinking of you! Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & EvanFrom: Joan Vallee <hayro1611>To: infantile_scoliosis Sent: Tuesday, September 15, 2009 8:21:28 AMSubject: Re: Isabella's next cast Good luck to you and Isabella. I totally understand. I have to tell my 9 year old to wash her hands after school and after she plays with friends. Our first cast is next monday. Let us know how it goes Friday. Joanmom to Hayden 2 1/262 degreesTreated at ish Rite Hospital Dallas, TXFrom: Patty Bowen <bowenpattyyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Monday, September 14, 2009 11:34:13 PMSubject: [infantile_scoliosi s] Isabella's next cast Hi everyone! Please throw prayers my way that Isabella doesn't get sick before her 2nd cast this Friday. My boys bring a virus of some sort home every few weeks from school and I've been driving them crazy yelling at them to keep their hands away from their faces. Yes, I'm a little neurotic right now. I just really want this to happen because I need to know if it's helping her at all. If she stays healthy, we will leave Thursday am and have her cast removed that day and the 2nd cast done on Friday. Anyone else going to be at Rochester those 2 days? Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & Evan________________________________________________ __

[Guest guest]

And we are in Rochester so we r the closest to Mayo and not to sure if we could afford to go out of state for help for him. Sent via BlackBerry from T-MobileFrom: Borlik Date: Tue, 15 Sep 2009 12:48:55 -0500To: <infantile_scoliosis >Subject: RE: Hi , Where are you located? You mentioned the Mayo so I'm assuming you're somewhere in or near MN. I'm in Minneapolis. I checked into the Mayo, Gillette and Shriners a couple of years ago when my son needed casting. None of the hospitals in MN were performing the casting technique that I wanted. The closest hospital was Shriner's in Chicago. I believe that is still the case. We ended up only going to Shriner's Chicago for a consult as the casting doc was out for a few months when Noah needed his cast. So we ended up traveling to Salt Lake City for our casts. I know that the Shriner's in Minneapolis is hoping to begin casting soon, but last I heard they still did not have a table. I've been meaning to email the nurse there to see how far along they are in the process of acquiring one. If you're not happy with the Mayo - I would suggest seeking out other opinions. Let me know if I can be of anymore help.~Noah 4 years old9 months of casting in SLC; Currently on 1 1/2 years of bracingAnd Mariella 7 months old currently waiting and watching at 11* To: infantile_scoliosis From: carriedonahoeymailDate: Tue, 15 Sep 2009 14:49:28 +0000Subject: Re: Isabella's next cast Hello everyone my name is and my son Tucker has scoliosis and is in his 2nd cast so was just kinda putting this out there cuz interested to hear how other parents and children have coped with all this! We have been going to Mayo but I don't feel like they have done the best job that they could for him. Was just kinda interested to see if anyone would have recent pictures of there childrens casts for me to seeSent via BlackBerry from T-Mobile From: Patty Bowen Date: Tue, 15 Sep 2009 06:07:58 -0700 (PDT)To: <infantile_scoliosis >Subject: Re: Isabella's next cast I'll be sure to do that and good luck with the casting on Monday. I'll be thinking of you! Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & EvanFrom: Joan Vallee <hayro1611>To: infantile_scoliosis Sent: Tuesday, September 15, 2009 8:21:28 AMSubject: Re: Isabella's next cast Good luck to you and Isabella. I totally understand. I have to tell my 9 year old to wash her hands after school and after she plays with friends. Our first cast is next monday. Let us know how it goes Friday. Joanmom to Hayden 2 1/262 degreesTreated at ish Rite Hospital Dallas, TXFrom: Patty Bowen <bowenpattyyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Monday, September 14, 2009 11:34:13 PMSubject: [infantile_scoliosi s] Isabella's next cast Hi everyone! Please throw prayers my way that Isabella doesn't get sick before her 2nd cast this Friday. My boys bring a virus of some sort home every few weeks from school and I've been driving them crazy yelling at them to keep their hands away from their faces. Yes, I'm a little neurotic right now. I just really want this to happen because I need to know if it's helping her at all. If she stays healthy, we will leave Thursday am and have her cast removed that day and the 2nd cast done on Friday. Anyone else going to be at Rochester those 2 days? Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & Evan________________________________________________ __