Re: RE: f/u HELP!

[Guest guest]

's WBC is 6.1 with only 20% grans which I think puts the anc at

1320...my ped wants to just watch and see what happens over the

weekend. Will keep you all informed. is usually so good about

showing what is body can and " won't " due when we see new doctors. I

know this level isn't real low, but according to the lab values I've

seen it qualifies as neutropenia. Last Neupogen was on Saturday.

PS to Pam: RMCC told me that they had 's IVIG preapproved, so I

didn't call BCBS and check. Guess what????they didn't. I have an

outstanding bill for $1788.00 . BCBS has requested records and I

reviewed policy for eligibility and his recurrent frequent infections

should make it covered. They cover for 5 or more infections in one year

(He had three in one month!). Thought you might get a laugh out of

this.

, 2yo, cyclic neutropenia, IgG deficiency with sub class 3

deficiency, Secretory IgA deficient, Low T cells, Low C4, Iron

deficiency anemia (resolved)

igh, 4 3/4, Mild CP, Chronic ear and sinus infections IgE deficient.

Libby, 10 y/o, healthy who loves playing basketball and tap dancing.

Kaitlyn, 13 y/o, mild asthma, otherwise healthy with a typical 13 going

on 30 attitude.....

Warren, husband of 6 years, IDDM using an insulin pump at present.

RE: RE: f/u HELP!

Jake's mouth is a hair better this morning. Wanted toast and ate one

bite. Asked for milk and only had a sip. Will see how the day goes.

From what I read, if this increased dose doesn't do anything in the next

48 hours, IV might be the only way to go. We can use acyclovir IV, the

other drugs IV are only approved if it is a resistant organism. Only

10-20% of the acyclovir gets into the system. With the vancyclovir 50%

does. failed on the vancyclovir also, so I really don't think

this will work either..Here I go, being a pessimist again. But, the

dose he's on now, is almost the max for an adult. And his weight last

night was 13.2 kg, He was 13.3 when we did the IVIG..So in two months,

he's lost a little weight. Not much, but he's not maintaining

either..I'll keep a close eye on him. He wants Shrek 2, so am trying to

get ready and get out and about before it gets real busy. I sure

enjoyed talking with you also. Depending on how he feels, I may or may

not go to work tomorrow. IF I get in early I'll give you a call so we

can meet face to face. Your support has been so helpful. Thanks so

much. )

<http://us.adserver./l?M=315388.5529724.6602080.3001176/D=grphe

alth/S=:HM/A=2372354/rand=767332230>

_____

[Guest guest]

In a message dated 11/5/2004 2:22:13 PM Central Standard Time,

lmschatz@... writes:

> They cover for 5 or more infections in one year

> (He had three in one month!). Thought you might get a laugh out of

> this.

>

>

:

What kind of infections are they talking about? Just wondering since 's

had 2 gastro infections, 2 ear infections and at least two URIs since she

started school in September. We are waiting to see how things are going a bit

further into the school year before we go get a second opinion.

(mom to , age 5-1/2, dairy intolerant-related GERD -- currently

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

other defs... and also to Kate, born 9/19/02, dairy intolerant)

[Guest guest]

, That was the quote from the BC/BS rep and she was talking about

our specific policy inclusions and referred to sinus/ear

infections/pneumonia's etc. Each policy is written different and what

is covered under one, often isn't covered under the other. We were told

there wouldn't be any changes going from BC/BS of North Dakota to

Illinois, but there were differences and its all how your employer

writes the policy. Sorry if I gave you false hope.

Re: RE: f/u HELP!

In a message dated 11/5/2004 2:22:13 PM Central Standard Time,

lmschatz@... writes:

> They cover for 5 or more infections in one year

> (He had three in one month!). Thought you might get a laugh out of

> this.

>

>

:

What kind of infections are they talking about? Just wondering since

's

had 2 gastro infections, 2 ear infections and at least two URIs since

she

started school in September. We are waiting to see how things are going

a bit

further into the school year before we go get a second opinion.

(mom to , age 5-1/2, dairy intolerant-related GERD --

currently

has polysaccharide antibody def, previously had transient IgG, IgA,

t-cell &

other defs... and also to Kate, born 9/19/02, dairy intolerant)

[Guest guest]

In a message dated 11/8/2004 3:38:44 PM Central Standard Time,

lmschatz@... writes:

> Sorry if I gave you false hope

Oh, no, , you're good, don't worry! We haven't been turned down by

insurance or anything like that, has never " qualified " for IVIG in the

eyes

of her ID/Immuno, but we're not sure she is the right doc for us. So we're

waiting to see if things get out of hand with school exposure before we bother

to

go to a new immuno. I was just wanting to mentally file away your insurance

company's requirement so I don't let get too far out of hand before I try

to improve her quality of life. Our insurance will cover most things (I hope)

as long as the doc considers them medically necessary. But if I wanted to wait

for the current ID/Immuno's help, it would come only after was at

death's door and I don't plan on waiting that long!

Thanks again --

(mom to , age 5-1/2, dairy intolerant-related GERD -- currently

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

other defs... and also to Kate, born 9/19/02, dairy intolerant)

[Guest guest]

Dr Shapiro feels that 's IVIG wasn't necessary now. The heme/onc

that did it has the attitude that if you know something is broke, it

doesn't really matter what it is if the treatment is the same. So, I

think that he uses a lot of IVIG. Dr. S wants to make sure that the

kids fail on conservative management..which is a difficult thing to

watch. But, I'm feeling more comfortable with the watching at this

point. My ped is making a referral to the U of Minn to see an

infectious disease specialist, probably another immuno and heme and I

also want to see cardiology as I listened to and his murmur was

really loud last night. He has a patent foramen ovale that hasn't

closed yet..the diarrhea is better, still won't eat, coughed up some

green stuff last night. We switched from augmentin to zithromax and

chewable acidophilus tablets are coming in today. Mouth looked good

yesterday, but he's chewing today, so I think that its probably worse.

Time will tell. Early intervention is coming, so best get ready.

Re: RE: f/u HELP!

In a message dated 11/8/2004 3:38:44 PM Central Standard Time,

lmschatz@... writes:

> Sorry if I gave you false hope

Oh, no, , you're good, don't worry! We haven't been turned down by

insurance or anything like that, has never " qualified " for IVIG in

the eyes

of her ID/Immuno, but we're not sure she is the right doc for us. So

we're

waiting to see if things get out of hand with school exposure before we

bother to

go to a new immuno. I was just wanting to mentally file away your

insurance

company's requirement so I don't let get too far out of hand

before I try

to improve her quality of life. Our insurance will cover most things (I

hope)

as long as the doc considers them medically necessary. But if I wanted

to wait

for the current ID/Immuno's help, it would come only after was at

death's door and I don't plan on waiting that long!

Thanks again --

(mom to , age 5-1/2, dairy intolerant-related GERD --

currently

has polysaccharide antibody def, previously had transient IgG, IgA,

t-cell &

other defs... and also to Kate, born 9/19/02, dairy intolerant)