Pattie

[Guest guest]

try scandishake for him, as well. It has 600 calories per serving and contains

MCT oil.. the most easily absorbed fats there are... You can get a free sample

from the company (http://www.axcanscandipharm.com/products/scandishake.html)

or see the info I cut and pasted from their web site below-- they also have a

recipe book for scandishake......

we use scadishake with our boys-- Pattie

Gain or Maintain Weight... Add Calories... with SCANDISHAKE®

SCANDISHAKE® calorie-rich shake mix is designed to assist patients who need to

gain or maintain weight. Mixed with 8 ounces of whole milk, a single serving of

SCANDISHAKE® contains approximately 600 calories!

SCANDISHAKE® is available in great-tasting Chocolate, Vanilla and Strawberry

flavors and can be mixed with a variety of foods and beverages to help combat

taste fatigue. Try SCANDISHAKE® mixed with different fruit juices, sodas and

extracts, and in casseroles, sauces and desserts. Also try SCANDISHAKE®

Lactose-Free and Sweetened with Aspartame formulations, both available in

Chocolate and Vanilla flavors. 89% of Oncology nurses surveyed preferred the

taste of SCANDISHAKE® when compared to Ensure Plus®.1

SCANDISHAKE® is gluten-free and certified as kosher.

For a FREE sample of SCANDISHAKE®, or to request additional information, please

call (800) 4-Scandi (800-472-2634).

You can also purchase SCANDISHAKE® directly from Axcan Scandipharm by calling

the telephone number listed above or by visiting our Online Store.

SCANDISHAKE® is also available through your local pharmacy.

[Guest guest]

THANKS so very much for the thoughts! WHEW... its one long Marathon, huh? I

wonder if you get a *free* T-shirt for running the race ~giggle~

Gotta have a sense of humor about it all....

Pattie

Pattie

Hey Pattie,

Hang in there. Often it feels like a marathon that we're running! My

thoughts will be with your family.

Sandi

[Guest guest]

THANKS so very much for the thoughts! WHEW... its one long Marathon, huh? I

wonder if you get a *free* T-shirt for running the race ~giggle~

Gotta have a sense of humor about it all....

Pattie

Pattie

Hey Pattie,

Hang in there. Often it feels like a marathon that we're running! My

thoughts will be with your family.

Sandi

[Guest guest]

THANKS for the tips... as I ws reading this, told ph, " My hand is tired

because I write a lot " I give him los of breaks, too. I feel better knowing

that this may be common w/ chronically ill kids. Not that I want anyone else

to have to go through it-- does that make sense?

THANKS for the tips!

pattie

Pattie

Hi Pattie,

I just wanted to let you know how I deal with 's fatigue issues. He

also gets tired, especially during writing, or if we have to walk any

distance. Since he is at home, the walking isn't a problem as much, but he

complains of muscle weakness.

When I do my portion of school work with him, I allow about twice as much

time to do the work. I have him do some of it, and then take a break. He

can do whatever he wants during the break, but has to be available when I

call him back to the table for more work. If he sprouts an attitude about

doing more work, I have him take his break at the table. Usually, his

attitude doesn't last with this method, because he would prefer to take a

break in his room! I find that allowing for these breaks makes his work

easier for him to accomplish, and I am very careful about frustration. It's

a difficult task to achieve accomplishment without frustration.

Sandi--Mom to , age 9. Suspected IgG def., Tetrology of Falot, chronic

sinusitis, chronic ear infections, severe allergies. Nine surgeries, one

pending.

[Guest guest]

We don't give it to them daily -- just once in a while when they have BAD gas

pain, etc.... it REALLY helps then... I would definitely not use it daily. I

have never asked the GI about it b/c we don't use it all the time... wish I

could help you with that one....

pattie

[Guest guest]

Pattie:

I'm sorry to hear 's battling such a nasty sinus infection. What did they

put him on? Take care --

(mom to , 3yrs old, polysaccharide antibody def)

[Guest guest]

Neutrophils are increased by:

Infections: osteomyelitis. otitis media, salpingitis, septicemia, gonorrhea,

endocarditis, smallpox, chickenpox, herpes,Rocky Mountain spotted fever

Ischemic necrosis due to myocardial infarction, burns, or cancer

Metabolic disorders: diabetic acidosis, eclampsia, uremia, thyrotoxicosis

Stress response due to acute hemorrhage, surgery, excessive exercise,

emotional distress, third trimester of pregnancy, or childbirth

Inflammatory diseases: rheumatic fever, rheumatoid arthritis, acute gout,

vasculitis, myositis

NEUTROPHILS ARE DECREASED BY:

Bone marrow depression due to radiation or cytotoxic drugs

Infections: Typhoid, tularemia, brucellosis, hepatitis, influenza, measles,

mumps, rubella, infectious mononucleosis

Hyper splenism: hepatic disease and storage diseases

Collagen vascular diseases, such as systemic lupus erythematosus

Deficiency of folic acid or Vitamin B12

[Guest guest]

Thanks for the info! They have never tried this with ph. I guess they

want to see if the new nasal spray will work... we talk to the ped again

next week. Thanks again!

pattie

Hi Pattie,

's sinuses swell shut frequently, which is one of the factors that

causes him to get infected. The only thing I know of that has worked at

this

stage is a five day course of Prednisone. Even if you end up giving

antibiotics, they might not reach the sinuses because of the swelling. That

is what the Prednisone is excellent at--anti-inflammatory.

Sandi, 's Mom

[Guest guest]

Thanks, Sandi.... he is still eating like a horse...thankfully. Thanks

for the info!!!

Pax,

Pattie

[Guest guest]

Just another thought on the allergy precautions. Seems like you're doing all

the best things. The only additional thing I could think of is I used to tape

cheesecloth (fold it over a couple times and cut to size) to the outside of

all room vents. So when the A/C or heat is blowing, the air that comes out of

the vent is filtered through that. You wouldn't believe the stuff that gets

trapped in there -- you see it when you take them down to change them. I also

put cheesecloth across the front vent of the furnace intake, but I don't know

if that's the best idea, it might force the furnace to work too hard and be a

strain on the system. I never had any problems with it though. Just a

thought...

(mom to , age 3, polysaccharide antibody def)

[Guest guest]

Thanks fro the tips-- we actually have filters on the vents... we bought teh

premade vent filters at Lowe's (like a Home Depot) I am sure hoping that it

helps!

THANKS!

pattie

-- Re: Pattie

Just another thought on the allergy precautions. Seems like you're doing all

the best things. The only additional thing I could think of is I used to

tape

cheesecloth (fold it over a couple times and cut to size) to the outside of

all room vents. So when the A/C or heat is blowing, the air that comes out

of

the vent is filtered through that. You wouldn't believe the stuff that gets

trapped in there -- you see it when you take them down to change them. I

also

put cheesecloth across the front vent of the furnace intake, but I don't

know

if that's the best idea, it might force the furnace to work too hard and be

a

strain on the system. I never had any problems with it though. Just a

thought...

(mom to , age 3, polysaccharide antibody def)

[Guest guest]

In a message dated 12/2/2002 8:47:31 PM Central Standard Time,

paxchristi@... writes:

> I hope no one minds my rambling on about things today.

Pattie: Ramble on... this from the queen of rambling!! Glad to hear your

" voice " again!

(mom to Kate, born 9/19/02; and , age 3-3/4 -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs)

[Guest guest]

Pattie:

The only thing I can tell you is that when we were given the choice to do

IVIG for and were hesitant, I did a lot of research. We decided to wait

a couple of months until her 2 yr testing, but had decided finally that we

definitely did want the treatment. Well, lo and behold her IgG came up a

little and they no longer considered her a candidate and the option was taken

away! I know it's no walk in the park but when I think of the dozens and

dozens of illnesses she's had since then, I wonder how many could have been

prevented with treatment.

(mom to Kate, born 9/19/02; and , age 3-3/4 -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs)

[Guest guest]

THANKS! I really appreciate everyone's input. I guess I am jus second guessing

everything...... do the kids feel awful for that long after the infusions? And

does it make that big of a difference in their lives. I won;t know that until

after my boys get it.

THANKS to all of you who have replied to me!

I truly appreciate it.

Pattie

Pattie:

The only thing I can tell you is that when we were given the choice to do

IVIG for and were hesitant, I did a lot of research. We decided to wait

a couple of months until her 2 yr testing, but had decided finally that we

definitely did want the treatment. Well, lo and behold her IgG came up a

little and they no longer considered her a candidate and the option was taken

away! I know it's no walk in the park but when I think of the dozens and

dozens of illnesses she's had since then, I wonder how many could have been

prevented with treatment.

[Guest guest]

I hope that all the sick pumpkins are soon feeling better.

Wenoka: Your story of your son sounds so much like Cassie's. I really

thought I was reading a chapter out of our own lives. For us, the choice was

not given to us whether or not to start the IVIG. We were pretty much told

that this was our only option. I am so glad we did. We have had our ups and

downs. But, nothing to compare what our lives were like pre-IVIG.

We must be battling that same cough. Cassie was in the ped's office

yesterday with a lower respiratory infection. It has brought on this yucky

cough. But, we are due IVIG on Monday, so we were on our downside of

protection. Almost can't wait until then.

Belinda Rose,

Mom to Allyssa (10) and Cassie (8), igg immunodeficient, asthma, sinusitis,

IVIG for 6 years, heart condition

[Guest guest]

Pattie,

Not everyone has such an adverse reaction to IVIG. hates the actual

procedure, but has never suffered more than fever and chills as a side

effect, and those were probably not due to the IVIG itself, but were

probably caused by the presence of an infection somewhere. And he didn't

even have that response for the first couple of years. About a year or so

ago he started having them (which also happened to be when we were fighting

the chronic sinus infections). But even the fevers and chills stopped once

they started pre-medicating him with Tylenol and Benadryl. They think that

probably the only reason he had the reaction was because he had an

infection in his body that he wasn't able to fight on his own, but once he

was " reinforced " with the IVIG, it boosted his immune system enough that it

started mounting a fever defense against whatever infection may have been

present. Now that the sinus infection has been under control, he may not

even have a problem with it anymore. But who wants to wait to find out

when it's as easy as a single dose of Tylenol and Benadryl a month to make

sure he is comfortable?

Anyway, just so you know - there are actually kids out there who (knock on

wood) have never had a problem with side effects and whose lives have

simply been enhanced by it.

Considering we almost lost him to encephalitis before he was diagnosed and

treatment started, the choice of whether or not to begin treatment was a

no-brainer - " Do I let my kid remain susceptible to life-threatening

illnesses, or do I let him get a treatment that will replace the IgG and

give him protection against a huge variety of illnesses? " - After all, each

treatment consists of hundreds if not thousands of donors. He's getting a

much wider variety of immunity than he would on his own. Probably more

than most people.

Anyway, whatever risks are involved are far outweighed by the fact that he

is alive and, over-all, in pretty good health - though we are fighting a

chronic cough right now 8-( . Of course, who's not this winter?

With the number and severity of illnesses that he had by the time he was

diagnosed at 17 months, I'm not sure that he would have survived without it.

Keep in mind that it took several months of treatment before he was

completely stabilized and primarily infection-free. I remember being so

heartbroken after he got out of the hospital and finished all of the rounds

of antibiotics. He developed a severe ear infection within 24 hours of

being off the anti-biotics. For about 4 months, he was on antibiotics most

of each month, then he slowly started having less and less infection. By

the end of the year, we could go for 2 - 3 months without antibiotics. We

had gone about 5 months without them when he got the sinus infection. We

just couldn't keep it in control, so the doc put him on the prophalactic

abx and other meds. Now he is rarely sick, and when he gets a virus, he

seems to get over it quicker than anyone else. (This cough is a stinker

though.)

Anyway, just my two cents.

God bless,

Wenoka

At 06:33 PM 12/13/2002 -0500, you wrote:

>THANKS! I really appreciate everyone's input. I guess I am jus second

guessing everything...... do the kids feel awful for that long after the

infusions? And does it make that big of a difference in their lives. I

won;t know that until after my boys get it.

>

>THANKS to all of you who have replied to me!

>

>I truly appreciate it.

>

>Pattie

[Guest guest]

I remember you mentioning several times that there were lots of

similarities between Sam and Cassie's " sinus stuff " . I'm just so sorry

that Cassie has had all of the heart problems in addition to the rest.

Seems like everybody I know has a cough this year. They've had enough of a

flu or cold epidemic in central Arkansas that several school have closed

because of it. Some of it is the flu, but they are still trying to

determine other problems.

Hope Cassie is doing well and all of your kids and you have a great Christmas.

God bless,

Wenoka

At 12:12 AM 12/14/2002 EST, you wrote:

>I hope that all the sick pumpkins are soon feeling better.

>

>Wenoka: Your story of your son sounds so much like Cassie's. I really

>thought I was reading a chapter out of our own lives. For us, the choice

was

>not given to us whether or not to start the IVIG. We were pretty much told

>that this was our only option. I am so glad we did. We have had our ups

and

>downs. But, nothing to compare what our lives were like pre-IVIG.

>

>We must be battling that same cough. Cassie was in the ped's office

>yesterday with a lower respiratory infection. It has brought on this yucky

>cough. But, we are due IVIG on Monday, so we were on our downside of

>protection. Almost can't wait until then.

>

>Belinda Rose,

>Mom to Allyssa (10) and Cassie (8), igg immunodeficient, asthma, sinusitis,

>IVIG for 6 years, heart condition

>

>

>

>

[Guest guest]

Wenoka, thank you so much for sharing with me. Our ped really thinks that we

will see her less if we give the boys IVIG. In fact, last night she said,

" well, if you cut out the cost of seeing Dr. G and then not have to see me as

much, it probably won't cost much more for IVIG'

LOL

You know you see your ped a lot when they can say that!

Pattie

[Guest guest]

OH yes- coughs abound here, too. and ph both have them :-( Both

boys now have low-grade temps.

THANKFULLY just has the sniffles...and hopefully it will resolve w/o

anything serious..he is our healthy one.

Pattie

[Guest guest]

OH yes- coughs abound here, too. and ph both have them :-( Both

boys now have low-grade temps.

THANKFULLY just has the sniffles...and hopefully it will resolve w/o

anything serious..he is our healthy one.

Pattie

[Guest guest]

Coughs are here, too! Rebekah popped a temp tonight just as my dh and I

were heading out to the Christmas banquet at the college. She didn't look

terribly sick, so I gave her motrin and left her with the sitter. I'm so

numb about medical expenses right now that I couldn't face the walk-in

clinic again. We can see the ped in the morning and hopefully it will be

our own pediatrician. Then, I can ask him face to face about the

prescriptions.

Pam

wife to (15 years)

mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1

Re: Pattie

OH yes- coughs abound here, too. and ph both have them :-( Both

boys now have low-grade temps.

[Guest guest]

Thanks for the info. I just cannot imagine it..... A friend will watch

here in town for me..... and well.. being a pilot, he can't just take

off whenever he wants to... he may be able to be there the first time... an then

since the trip to the hospital is a 3 hr round trip, and if the infusion takes

8 hrs the first time... I don;t have any friends who can stay that long with

me--they all have families to care for. We will manage with God's grace...

will hopefully be able to take off that day-- at least the first one...

Our hospital is really nice... great play rooms for the kids, etc... we won;

know how it all works until we get there, but we love our hospital. and the

staff.

Pattie

[Guest guest]

Dear Pattie,

Having all the docs agree on a complex case is like congress voting for

a pay cut. It doesn't really happen too often if ever at least in my

experience. I think that all you can do is listen to what the docs have to

say and then go with what you think is best.

We're sort of in the same boat trying to make a decision whether to go

with low dose prophylactic antibiotics or a trial of IVIG or just sort of

wait. We are seeing an infectious disease specialist tomorrow to discuss the

implications of continuous low dose antibiotics (every trial with

prophylactic antibiotics for sinusitis has not worked to this date but why

knows, maybe they will have some new information for us) Our immuno has told

us a similar tale--he is not sure IVIG would help because she gets

mainly respiratory infections--It may be only IgA deficiency and the fact

that her heart doesn't function at 100% causing the problems in which case

the IVIG wouldn't help or she may have some IgG subclass malfunctioning which

they can't as yet measure and the IVIG would help. I guess the only way they

would know would be a trial. It is a scary prospect though. Good luck on all

your doc visits. I will be thinking of you and the boys.

Martha(mom to Chrissy IgA deficiency etc.)

[Guest guest]

In a message dated 1/2/2003 12:56:52 PM Central Standard Time,

K979@... writes:

> I guess the only way they

> would know would be a trial.

Wow. Our immuno would never even consider that. I don't know if she's gotten

slapped around by insurance companies in the past or what, but unless you

have some pretty horrible numbers, she won't recommend IVIG unless you've had

two or more life-threatening infections like meningitis or encephalitis or

osteomylitis (pneumonia does not count). 's had pneumococcal meningitis

and her pneumococcal antibodies are lower than ever, but she's not a

candidate according to the immuno because her IgG is up to the 500s now.

Shrug.

(mom to Kate, born 9/19/02; and , age 3-3/4 -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs)

[Guest guest]

I hate when docs have that attitude..... GRRRrrrrr. I wonder if we can stop

the boys from needing so many antibiotics..... we'll seee.....

><>Pattie

Sorry kid, it's nothing deadly so you're out of luck! " I was

disappointed to say the least, after agonized over the decision like that. In

hindsight, she hasn't had anything deadly, but I wonder how many gallons of

abx she might have been spared or if she could have avoided some of the

billions of infections. Maybe not, maybe many were IgA related and IVIG

doesn't help with that. But I don't waste too much time or emotion wondering

what might have been, I just thank God that she's improved as much as she

has. I think it's pretty miraculous considering they all thought hers was not

a transient disorder.