what a week!

[Guest guest]

Hi Jeri,

Stop thinking about all the workouts you missed and focus on the fact

that you're back home and you can workout in your basement. The

longer you wait to get back into it, the harder it will be. In

January, my three missed workouts turned into six missed workouts,

which turned into... you get the picture. You want to do this,

because you're here posting. You've never failed until you've stopped

trying.

Dani

> Hey ladies...

> I am going to have to do better than I did last week to make it

> through Challenge 2! I was away for 3 days, 2 of which were driving

> days, which made eating right a challenge for me, much less

exercise.

> And you KNOW what happens when we skip a day exercising...it's so

> hard to come back, at least mentally. I believe the body wants it,

> the mind makes up every excuse in the world. Missed every workout

> last week for one reason or another, and here I am at 7:30 in the

> morning trying to kick myself into some workout clothes. Who could

> have it any better? The gym is my basement! I get to choose the

> music I listen to. I don't have to worry about someone else being

on

> the equipment I want to use. (This is self-talk more than anything

> else, but it helps to share.)

> Alright, I'm going to do it. I want that lean, firm body and

> excellent fitness test scores!

> thanx for letting me vent

>

> Jeri

[Guest guest]

Great self-talk, Jeri! I want you to get 100% on that fitness test, but more

importantly, YOU WANT IT. You will get right back in the saddle this week I can

tell.

Park

What a week!

Hey ladies...

I am going to have to do better than I did last week to make it

through Challenge 2! I was away for 3 days, 2 of which were driving

days, which made eating right a challenge for me, much less exercise.

And you KNOW what happens when we skip a day exercising...it's so

hard to come back, at least mentally. I believe the body wants it,

the mind makes up every excuse in the world. Missed every workout

last week for one reason or another, and here I am at 7:30 in the

morning trying to kick myself into some workout clothes. Who could

have it any better? The gym is my basement! I get to choose the

music I listen to. I don't have to worry about someone else being on

the equipment I want to use. (This is self-talk more than anything

else, but it helps to share.)

Alright, I'm going to do it. I want that lean, firm body and

excellent fitness test scores!

thanx for letting me vent

Jeri

[Guest guest]

Jeri, everybody seems to struggle a bit going into a second challenges. Did you

take enough time off between them? You obviously worked very hard the first time

around. If you didn't take a break you may be getting a little burned out. Don't

let a couple of missed workouts mess with your mind though. Rest if you need the

rest, and train hard if it's time to hit it again!

I'm SO sure that you'll do great, I've made you poster girl!!! You're already an

inspiration. :-)

What a week!

Hey ladies...

I am going to have to do better than I did last week to make it

through Challenge 2! I was away for 3 days, 2 of which were driving

days, which made eating right a challenge for me, much less exercise.

And you KNOW what happens when we skip a day exercising...it's so

hard to come back, at least mentally. I believe the body wants it,

the mind makes up every excuse in the world. Missed every workout

last week for one reason or another, and here I am at 7:30 in the

morning trying to kick myself into some workout clothes. Who could

have it any better? The gym is my basement! I get to choose the

music I listen to. I don't have to worry about someone else being on

the equipment I want to use. (This is self-talk more than anything

else, but it helps to share.)

Alright, I'm going to do it. I want that lean, firm body and

excellent fitness test scores!

thanx for letting me vent

Jeri

[Guest guest]

Jeri - you can always come here and vent! I hope you talked yourself into going

to the gym! I did today after over a week of not going because of my back ... I

just did cardio but it felt great!!!

Rita

What a week!

Hey ladies...

I am going to have to do better than I did last week to make it

through Challenge 2! I was away for 3 days, 2 of which were driving

days, which made eating right a challenge for me, much less exercise.

And you KNOW what happens when we skip a day exercising...it's so

hard to come back, at least mentally. I believe the body wants it,

the mind makes up every excuse in the world. Missed every workout

last week for one reason or another, and here I am at 7:30 in the

morning trying to kick myself into some workout clothes. Who could

have it any better? The gym is my basement! I get to choose the

music I listen to. I don't have to worry about someone else being on

the equipment I want to use. (This is self-talk more than anything

else, but it helps to share.)

Alright, I'm going to do it. I want that lean, firm body and

excellent fitness test scores!

thanx for letting me vent

Jeri

[Guest guest]

Good advice Dani!

Rita

Re: What a week!

Hi Jeri,

Stop thinking about all the workouts you missed and focus on the fact

that you're back home and you can workout in your basement. The

longer you wait to get back into it, the harder it will be. In

January, my three missed workouts turned into six missed workouts,

which turned into... you get the picture. You want to do this,

because you're here posting. You've never failed until you've stopped

trying.

Dani

> Hey ladies...

> I am going to have to do better than I did last week to make it

> through Challenge 2! I was away for 3 days, 2 of which were driving

> days, which made eating right a challenge for me, much less

exercise.

> And you KNOW what happens when we skip a day exercising...it's so

> hard to come back, at least mentally. I believe the body wants it,

> the mind makes up every excuse in the world. Missed every workout

> last week for one reason or another, and here I am at 7:30 in the

> morning trying to kick myself into some workout clothes. Who could

> have it any better? The gym is my basement! I get to choose the

> music I listen to. I don't have to worry about someone else being

on

> the equipment I want to use. (This is self-talk more than anything

> else, but it helps to share.)

> Alright, I'm going to do it. I want that lean, firm body and

> excellent fitness test scores!

> thanx for letting me vent

>

> Jeri

[Guest guest]

In a message dated 5/27/2002 12:53:23 PM Central Daylight Time,

ribar@... writes:

>

> Jeri - you can always come here and vent! I hope you talked yourself into

> going to the gym! I did today after over a week of not going because of my

> back ... I just did cardio but it felt great!!!

> Rita

>

Did it Ri? thats Great! I didnt even get to 4 miles on the bike today (

Oh well, Better than NOT getting on the bike today.

My back got pretty sore doing it too, I had to keep shifting my butt around

to find a differnt position

[Guest guest]

That's okay Bec ... it'll get better ... when was the last time you did the

bike?

Re: What a week!

In a message dated 5/27/2002 12:53:23 PM Central Daylight Time,

ribar@... writes:

>

> Jeri - you can always come here and vent! I hope you talked yourself into

> going to the gym! I did today after over a week of not going because of my

> back ... I just did cardio but it felt great!!!

> Rita

>

Did it Ri? thats Great! I didnt even get to 4 miles on the bike today (

Oh well, Better than NOT getting on the bike today.

My back got pretty sore doing it too, I had to keep shifting my butt around

to find a differnt position

[Guest guest]

In a message dated 5/27/2002 10:41:55 PM Central Daylight Time,

ribar@... writes:

> That's okay Bec ... it'll get better ... when was the last time you did the

> bike?

>

oohh, bout 6:30 tonight... didnt stay on it though

[Guest guest]

On Monday where I work the air conditioner wasn't working and we had to be

without air conditioning all day. It was bad enough it was sweltering

outside, but inside too. I felt like I was working in a sauna. I couldn't

wait to get home and take a shower and cool off. It was a " Manic Monday! " ;-O

Stereotyping of any group be it of a different color, religion, nationality,

disability, etc., its ignorant. It amazes me how some people loosely use the

term 'retarded' when they think something is stupid. In fact I worked with

the retarded (mentally challenged). To me they were the nicest, hard working

people out there. I couldn't believe one time I overheard someone that had

worked one on one with them use that term in a negative way. Awhile back I

had some people from India move into my neighborhood and someone who knows me

had made some comments to me about that. There is good and bad in every

bunch. It didn't bother me that they were from India or a nearby country.

Where I come from we had quite a diversity of people from all different types

of backgrounds which is interesting. To me as long as people are friendly it

doesn't matter what ethnic, financial or disability background they posses.

It makes for a beautiful day in the neighborhood. Recently someone at my job

had made a statement about people from NY which is not as bold as stating

something about a person's ethnic or disability, but still to me rather

ignorant. I had thought to myself how would he feel if people had commented

to him in a bold manner about him having a first name that is more commonly

associated with a female.

It just makes you wonder...

Helen (who is hoping she will hear and see raindrops falling on her head)

[Guest guest]

Kimmi, I know you are exhausted! It's over now you can relax. My daughter has

had her port for a year now and it has been a blessing! It was getting to the

point there was NO starting IV's or getting blood, seriously! It gets worse not

better, we never even spoke to our Doc about subQ Britt was against it. You are

right it is so much easier! Plus, no more worry " are they going to get it? "

Switching brands isn't a good thing. Did they say why they wanted him on

Gamunex? It sounds like you live near me, and Gamunex is hard to get right now.

You might want to talk to them about this.

Glad your little guy is home where he belongs and feeling better. You try to get

some rest:)

Janet, mom to Brittany CVID age 15

koed@...

Sent: Mon, 9 Oct 2006 8:48 AM

Subject: What a Week!

Thursday Sept 28th Lochlan had a port put in. Even knocked out for

the surgery it took them until the 4th stab to start an IV. If they

can't start an IV on him unconscious then I guess we needed the

port. I know its controversial. It was VERY scary for me and a

really hard decision. Its been a tough week, so please refrain from

shaming me ok? I never did get an answer from Dr Berger on why he

wouldn't do Sub-Q (the local immunologist supposes it has to do with

his Keratosis Pilaris, eczema, and frequent skin infections with

strep and staph and recurrent cellulitis). But anyway since we HAD

to do IVIg then really the port was the only option for him. He has

NEVER had blood drawn in under 3 pokes, NEVER had an IV started in

under 4. He was septic and it took 23 pokes to get the IV started,

40 hours and they STILL hadn't been able to draw blood. He is a HARD

start.

The surgery was hard. I was SICK with worry. He couldn't eat after

midnight and surgery didn't start until after NOON! Thats so hard on

a toddler Then the 45 minute operation took 2 hours. The 15

minutes it was supposed to take to get him off the vent in recovery

took an hour. I was beside myself. But after that things went fine.

He HATES medicine and fought us on it, but he did hurt and sometimes

we needed to dose him. Saturday he inhaled some codeine. He ended up

in Childrens Hospital with aspiration pneumonia, a double ear

infection, and a UTI. It was a 5 day stay. His neutrophil count was

220 when we left. IgG was 140.

So Friday we started IVIG we are supposed to get gammunex, but they

were out and decided he needed it ASAP so he got gammaguard instead.

Is there a big difference between the 2? We'll get gammunex next

time- is switching really a big issue? Can IVIG help boost his wbc

and neutrophil count? They said it won't help the complement

deficiency but will help the select antibody deficiency.

The infusion went really well. Accessing the port is so easy, fast,

and painless for him. I could just cry its so easy. He's been

through so much and to see one painless poke yield blood draws and

start an IV was just amazing for us.

Thanks for listening

-Kimmi (mom to Connor 8 autism, dyslexia, neurofibromatosis, mild

hearing loss; Skye 7; Trew 3; Lochlan 20 months

hypogammaglobulinemia with complement deficiency, select antibody

deficiency, neutropenia, seizures, global delays, limb length

discrepency, torticollis, visual delays, hearing loss one-sided,

anemia, the list goes ON)

________________________________________________________________________

Check out the new AOL. Most comprehensive set of free safety and security

tools, free access to millions of high-quality videos from across the web, free

AOL Mail and more.

[Guest guest]

" Is there a big difference between the 2? We'll get gammunex next time- is

switching really a big issue? "

Kimmi,

No one knows Lochlan better than you and your DH. You did what was best for

your child's circumstances. I hope you see significant improvement soon.

Not all IgG products are the same. They are very similar but some are processed

differently, contain different " preservatives/stabilizers " , IgA, etc. Some

PIDDers can switch brands without a hitch. Others, like mine (who got aseptic

meningitis 24 hours post IVIG), are super sensitive to brands and finding one

she could tolerate was trial and error. But, she is in Val's 1% " it rarely

happens " club too. Lochlan is fortunate that you got it right the first time!

I am not sure whether or not a change from Gammagard to Gamunex would affect

him.

We love Gamunex. It is the only brand my daughter tolerates well. BUT, some

kids -- particularly those with true IgA deficiency -- may not be able to

tolerate it. I am not sure if this is a consideration for your son. It happens

that Gammagard S/D has the smallest amount of IgA in it (which is safer for

children with IgA deficiency...avoids autoantibody reactions).

So happy to hear that the infusion went well! Awesome!

FYI: There is a IVIG Town Hall Meeting (U.S. Dept of Health and Human Services)

to hear about access problems patients and physicians are having (our

immunologist gave me this information, but I believe it was forwarded to him by

FFF Enterprises). Deadline is Oct. 15. Anyone with problems in obtaining IVIG

infusions is asked to share their story by emailing it to meetings@....

Type in the subject field: IVIG Meeting Comments. Some of the topics include:

patients having to switch IVIG products due to access problems, any problems you

have involving IVIG access, reimbursement, health consequences for patients of

any access issues, patients receiving reduced dosages than needed, fewer

treatments than needed, undesirable changes in IVIG treatment location, etc.

Dani(5), CVID

[Guest guest]

gammunex is just what they ordered for him I guess. But there isn't

any to be had here right now and his numbers were so lousy that the

local immunologist wouldn't let him go another day without SOMEthing-

so we got the gammaguard and it went fine.

>

> Kimmi, I know you are exhausted! It's over now you can relax. My

daughter has had her port for a year now and it has been a blessing!

It was getting to the point there was NO starting IV's or getting

blood, seriously! It gets worse not better, we never even spoke to

our Doc about subQ Britt was against it. You are right it is so much

easier! Plus, no more worry " are they going to get it? "

> Switching brands isn't a good thing. Did they say why they wanted

him on Gamunex? It sounds like you live near me, and Gamunex is hard

to get right now. You might want to talk to them about this.

> Glad your little guy is home where he belongs and feeling better.

You try to get some rest:)

>

> Janet, mom to Brittany CVID age 15

>

>

[Guest guest]

thanks ! As always you are a wealth of information and

support. The IVIG nurse said gammunex is " cleaner " ? IgA is normal

for Lochlan, its low-end normal (like his IgE) but it is technically

normal. Its IgG and IgM that are bottomed out for him.

>

> " Is there a big difference between the 2? We'll get gammunex next

time- is switching really a big issue? "

>

> Kimmi,

>

> No one knows Lochlan better than you and your DH. You did what

was best for your child's circumstances. I hope you see significant

improvement soon.

>

> Not all IgG products are the same. They are very similar but some

are processed differently, contain

different " preservatives/stabilizers " , IgA, etc. Some PIDDers can

switch brands without a hitch. Others, like mine (who got aseptic

meningitis 24 hours post IVIG), are super sensitive to brands and

finding one she could tolerate was trial and error. But, she is in

Val's 1% " it rarely happens " club too. Lochlan is fortunate that

you got it right the first time!

>

> I am not sure whether or not a change from Gammagard to Gamunex

would affect him.

>

> We love Gamunex. It is the only brand my daughter tolerates

well. BUT, some kids -- particularly those with true IgA

deficiency -- may not be able to tolerate it. I am not sure if this

is a consideration for your son. It happens that Gammagard S/D has

the smallest amount of IgA in it (which is safer for children with

IgA deficiency...avoids autoantibody reactions).

>

> So happy to hear that the infusion went well! Awesome!

>

> FYI: There is a IVIG Town Hall Meeting (U.S. Dept of Health and

Human Services) to hear about access problems patients and

physicians are having (our immunologist gave me this information,

but I believe it was forwarded to him by FFF Enterprises). Deadline

is Oct. 15. Anyone with problems in obtaining IVIG infusions is

asked to share their story by emailing it to meetings@... Type in

the subject field: IVIG Meeting Comments. Some of the topics

include: patients having to switch IVIG products due to access

problems, any problems you have involving IVIG access,

reimbursement, health consequences for patients of any access

issues, patients receiving reduced dosages than needed, fewer

treatments than needed, undesirable changes in IVIG treatment

location, etc.

>

>

> Dani(5), CVID

>

>

[Guest guest]

Are we supposed to know what they are giving our kids before they get the

IV? I don't recall being told or having a choice?

_____

From: [mailto: ] On Behalf Of

cklobo

Sent: Monday, October 09, 2006 4:48 PM

Subject: Re: What a Week!

thanks ! As always you are a wealth of information and

support. The IVIG nurse said gammunex is " cleaner " ? IgA is normal

for Lochlan, its low-end normal (like his IgE) but it is technically

normal. Its IgG and IgM that are bottomed out for him.

>

> " Is there a big difference between the 2? We'll get gammunex next

time- is switching really a big issue? "

>

> Kimmi,

>

> No one knows Lochlan better than you and your DH. You did what

was best for your child's circumstances. I hope you see significant

improvement soon.

>

> Not all IgG products are the same. They are very similar but some

are processed differently, contain

different " preservatives/stabilizers " , IgA, etc. Some PIDDers can

switch brands without a hitch. Others, like mine (who got aseptic

meningitis 24 hours post IVIG), are super sensitive to brands and

finding one she could tolerate was trial and error. But, she is in

Val's 1% " it rarely happens " club too. Lochlan is fortunate that

you got it right the first time!

>

> I am not sure whether or not a change from Gammagard to Gamunex

would affect him.

>

> We love Gamunex. It is the only brand my daughter tolerates

well. BUT, some kids -- particularly those with true IgA

deficiency -- may not be able to tolerate it. I am not sure if this

is a consideration for your son. It happens that Gammagard S/D has

the smallest amount of IgA in it (which is safer for children with

IgA deficiency...avoids autoantibody reactions).

>

> So happy to hear that the infusion went well! Awesome!

>

> FYI: There is a IVIG Town Hall Meeting (U.S. Dept of Health and

Human Services) to hear about access problems patients and

physicians are having (our immunologist gave me this information,

but I believe it was forwarded to him by FFF Enterprises). Deadline

is Oct. 15. Anyone with problems in obtaining IVIG infusions is

asked to share their story by emailing it to meetings@... Type in

the subject field: IVIG Meeting Comments. Some of the topics

include: patients having to switch IVIG products due to access

problems, any problems you have involving IVIG access,

reimbursement, health consequences for patients of any access

issues, patients receiving reduced dosages than needed, fewer

treatments than needed, undesirable changes in IVIG treatment

location, etc.

>

>

> Dani(5), CVID

>

>

[Guest guest]

Don't feel bad about the port, all of our kids are individuals and

treatments for PID certainly are variable. We tried SCIG for several months

and Conner hated it. He has terrible veins so we knew he would end up with

a port if he went with IVIG. We had his port put in this past December and

it's been ok, although not great. We just do what we can to make the best

of this situation.

We have switched products from time to time, but try to not make a habit of

it. We now use Gammagard and love it! We have seen Conner's white count

all over the board, I'm not sure IVIG makes much difference in our case.

Out of curiosity, have they ever checked Lochlan's NK cell function, not

just the cell count? That was one thing that Dr. Berger failed to test for

in our case and it turned out to be a big piece of the puzzle.

Hope the little guy is feeling better!

Take care,

Mom to Conner (12, NEMO/XHIM, asthma,

Hashimoto's disease and resolved adrenal insufficiency),

Hayden (12, unknown immune deficiency, IBS and moderate hearing loss/aided),

Evan (12, unknown immune deficiency, asthma and mild hearing loss/unaided),

and Kelsey - (10, unknown immune deficiency and asthma)

Please visit us at www.caringbridge.org/in/connersmith

[Guest guest]

" The IVIG nurse said gammunex is " cleaner " ? IgA is normal for Lochlan... "

Kimmi,

I was not aware of what the nurse said but it is true that my daughter does

great with Gamunex. As you have read, there are kids in the group that do great

with Gammagard (sp?) so he has outstanding options. I can't think of a reason

why Gamunex would be contraindicated, if that is what the nurses want to use.

As long as your doc thinks it is a good choice, and he is monitored during the

switch, I would not worry about a change. Still, take notes and see if one is

better for " him " than the other. It is good to have alternatives -- you never

know when you might need to use that ace up your sleeve. = )

I applaud you for getting appropriate and timely treatment! (though it may have

felt like an eternity to you).

Dani's mom CVID

[Guest guest]

>

> Out of curiosity, have they ever checked Lochlan's NK cell

function, not

> just the cell count? That was one thing that Dr. Berger failed to

test for

> in our case and it turned out to be a big piece of the puzzle.

>

actually I know the report says something about NK cells, but I

think its a low number and I'm not sure if he tested the function?

I'll check the report this afternoon (its in DH's car because he has

to fax some labs on his way home today)

I guess there are lots of SCIDs. Dr Berger will only identify

the " pieces " until Lochlan is 5 and then will redo all the testing.

Our local immunologist says its really a SCID.

I hope the IgG makes enough of a difference, there are so many

broken pieces to his immune system.

-Kimmi

[Guest guest]

>

> I guess there are lots of SCIDs. Dr Berger will only identify

> the " pieces " until Lochlan is 5 and then will redo all the testing.

> Our local immunologist says its really a SCID.

If they really believe that (his infection history is significant!), I would

push for more answers. The sooner he is identified, the better. What about

genetic testing? Berger could at least look at some of the genetic forms of

SCID and CID. It would also be helpful to know NK function.

We didn't get any genetic testing done on Conner until we got to Cincinnati.

We recently learned that Conner has a form of x-linked hyper IgM and our

previous immunos never thought to test for it because when we first ran his

immune studies, his IgM was well below normal. To give our other docs a

little credit, Conner has a defect of his NEMO gene, which is extremely

rare.

Hang in there!

Take care,

Mom to Conner (12, NEMO/XHIM, asthma,

Hashimoto's disease and resolved adrenal insufficiency),

Hayden (12, unknown immune deficiency, IBS and moderate hearing loss/aided),

Evan (12, unknown immune deficiency, asthma and mild hearing loss/unaided),

and Kelsey - (10, unknown immune deficiency and asthma)

Please visit us at www.caringbridge.org/in/connersmith

[Guest guest]

I thought SCIDs had to have B AND T cell defects? his T cells are

pretty normal though.

>

> >

> > I guess there are lots of SCIDs. Dr Berger will only identify

> > the " pieces " until Lochlan is 5 and then will redo all the

testing.

> > Our local immunologist says its really a SCID.

>

>

> If they really believe that (his infection history is

significant!), I would

> push for more answers. The sooner he is identified, the better.

What about

> genetic testing? Berger could at least look at some of the

genetic forms of

> SCID and CID. It would also be helpful to know NK function.

>

> We didn't get any genetic testing done on Conner until we got to

Cincinnati.

> We recently learned that Conner has a form of x-linked hyper IgM

and our

> previous immunos never thought to test for it because when we

first ran his

> immune studies, his IgM was well below normal. To give our other

docs a

> little credit, Conner has a defect of his NEMO gene, which is

extremely

> rare.

>

> Hang in there!

>

> Take care,

>

> Mom to Conner (12, NEMO/XHIM, asthma,

> Hashimoto's disease and resolved adrenal insufficiency),

> Hayden (12, unknown immune deficiency, IBS and moderate hearing

loss/aided),

> Evan (12, unknown immune deficiency, asthma and mild hearing

loss/unaided),

> and Kelsey - (10, unknown immune deficiency and asthma)

> Please visit us at www.caringbridge.org/in/connersmith

>

[Guest guest]

>I thought SCIDs had to have B AND T cell defects?

I'm not sure about SCID, but with CID you can have normal numbers of

T-cells, but they don't function well. Do you know what is making your

local immuno thinks it's SCID?

In our case, Conner has mostly normal numbers of T-cells, B-cells and

NK-cells, but all of their functions seem impaired. The genetic testing

helped us confirm his CID. Basically his genetic defect is preventing his

T-cells from getting and/or giving the signal to assist the B and NK cells.

Transplant would solve this problem, but that's not an easy decision for us

at this time. He's been pretty healthy recently, which makes it hard to

think about.

Take care,

Mom to Conner (12, NEMO/XHIM, asthma,

Hashimoto's disease and resolved adrenal insufficiency),

Hayden (12, unknown immune deficiency, IBS and moderate hearing loss/aided),

Evan (12, unknown immune deficiency, asthma and mild hearing loss/unaided),

and Kelsey - (10, unknown immune deficiency and asthma)

Please visit us at www.caringbridge.org/in/connersmith

[Guest guest]

the age of onset, the frequency and severity and sheer variety of

infections. The fact that he shouldn't GET sick really since he

doesn't go anywhere and we take precautions and his siblings don't

go to school to bring home germs etc. For now we're going with Dr

Bergers weird dx (which is really just several " little " dx's) and

then we'll re-run the tests at 3yrs and 5 yrs I guess?

we did a baseline blood draw on Friday. His neutrophils, wbc, and

IgG are lower again. What causes a drop in neutrophils?

>

> >I thought SCIDs had to have B AND T cell defects?

>

>

> I'm not sure about SCID, but with CID you can have normal numbers

of

> T-cells, but they don't function well. Do you know what is making

your

> local immuno thinks it's SCID?

>

> In our case, Conner has mostly normal numbers of T-cells, B-cells

and

> NK-cells, but all of their functions seem impaired. The genetic

testing

> helped us confirm his CID. Basically his genetic defect is

preventing his

> T-cells from getting and/or giving the signal to assist the B and

NK cells.

> Transplant would solve this problem, but that's not an easy

decision for us

> at this time. He's been pretty healthy recently, which makes it

hard to

> think about.

>

> Take care,

>

> Mom to Conner (12, NEMO/XHIM, asthma,

> Hashimoto's disease and resolved adrenal insufficiency),

> Hayden (12, unknown immune deficiency, IBS and moderate hearing

loss/aided),

> Evan (12, unknown immune deficiency, asthma and mild hearing

loss/unaided),

> and Kelsey - (10, unknown immune deficiency and asthma)

> Please visit us at www.caringbridge.org/in/connersmith

>

[Guest guest]

Kimmi,

You might want to make sure that your local immuno knows about the Consulting

Immunologist Program at the IDF. 1-877-666-0866. It is free and accessible via

phone or email. If she feels it is SCID, she can request an expert in that area

to review your case.

As you know, SCID is considered a medical emergency -- even though a few cases

have lasted a few years without BMT. If you are interested, you could request

to speak with a SCID volunteer though the IDF. This really helped me three

years ago. Main number for IDF: 800-296-4433

Most SCID babies are immediately treated with IVIG so that they can last long

enough for BMT. I know families that have waited up to one year for BMT -- on

IVIG. So, IVIG does benefit even the worst cases of CID -- but for a short

period. is right on...there are sooo many variants of SCIDS and, I

believe, Dr. Puck at UCSF is documenting them.

Five years is too long to wait if your doc thinks SCID is in the cards.

Strength and blessings,

mom to CVIDer

[Guest guest]

" I thought SCIDs had to have B AND T cell defects? his T cells are pretty normal

though. "

Kimmi,

This seems like good news but there are so many variations of SCID and immune

disorders, in general. When you look at the literature you may see a " + " sign

for positive cells or " - " sign for negative cells. I believe that SCID can be

T- B-, T+ B- etc...but you really need a SCID expert like Dr. Puck to

differentiate.

Dr. Puck: http://www.ucsf.edu/immuno/faculty/Puck_main.htm

Also, there is some info on various forms of SCID here:

http://www.emedicine.com/med/topic2214.htm

Take care,

mom to CVIDer

[Guest guest]

oh! thats right! the IDF consulting thing! Brilliant, I'll have her

contact them Thank you!

You think you finally have some answers- and then things just get

MORE confusing!

I guess I need them to really figure it out soon, I'm growing some

nice cord blood Lochlan could have...

-Kimmi

[Guest guest]

Kimmi,

The consulting is for any doc. The Volunteer program (where you can find an

informed mom that has been dealing with a similar situation...in your case,

possibly SCID) is for you. Call call call. = ) Please tell us what you learn.

Dani's mom