Blood work

[Guest guest]

Macey has bouts of fatigue. She is 10 and still naps. Even this morning

she was tardy to school because of being run down and needing extra hours of

sleep. Every immunologist (that sounds like a ton but we've had one move

and one referral to a university hospital besides our regular immuno) has

said that fatigue is seen alot in CVID patients. We've periodically checked

Macey's hemoglobin, thyroid, iron. Anything that might be low and cause her

to be tired. All normal. Macey's liver levels have been high before, they

say it can be due to maintenance Advil use or IVIG. Believe it or not they

were comfortable accepting much higher numbers. She was around 200 for a

while but all worked out. Her immuno said it would have to be over 1000

before he would stop the IVIG.

Ursula Holleman

mom to (12 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

[Guest guest]

All the tiredness has me on edge. I have to say, I try to live normally with

what we have been handed. I think we do a pretty good job. However, fear is

always on the back burner. I don't dwell on it anymore, it's been 4

years....but it never goes away. When I see those " Droopy " eyes, I get

worried...Is something brewing??? Could something else be cropping up???

Chris' only medical issues are the CVID and ADHD. I know many of you deal with

a very long list of things...things that I know he is at higher risk of. I have

pediatricians that poo poo everything and now he's only being seen once a year

by the immunologist...I think thats going to change! I am going to ask them to

at least run his blood work every six months...

Another thing is, I have two nephews (my sister's children). One of them (3yrs)

developed herpetic witlow (spelling?) on his thumb....huge horrible thing that

lasted weeks and weeks when he was less than 1 year old. Now gets outbreaks of

cold sores on his face that are becoming more and more frequent, instead of

fewer and farther between like the Dr. said....Then his baby brother, 8 mo's

old, had wheezed from the time he was 6 weeks to now...finally went to

specialist to find out he has GERD, Asthma and Allergies. The wheezing is

better now after long rounds of Augmentin, Zantac, Xopenex, and (??the steroid

maintenance one, can't remember the name)... For those of you nurses out there

and anyone else who may know...Do you think there could be a connection. I hate

to sound paranoid, but they never ruled out XLA for Chris....and as far as CVID

goes, I have read it can cluster....Her babies IG levels were both tested at

like 4 months old, which I know is not reliable. Just curious

if anyone here has any family links. I know chris didn't show any real signs

until he was 4 and went to preschool...before that, maybe a little sicker than

the rest, but nothing alarming. We think I had Selective IGA deficiency when I

was a small child, resolving itself as I hit middle school. I had pneumonia 4

times, bronchitis EVERY time I got a sniffle, was very sick ALWAYS, one year

missed 35 days of school....Drs. think it very well could have been, of course

no way to be sure now.

Well, I will bring all these issues up at his appointment this month. But,

thanks for letting me get this off my chest. If anyone has any insight, please

share.

Thanks.

Kim, mom to 8 - CVID

Re: Blood Work

> In a message dated 5/3/2005 10:45:29 AM Central Standard Time,

> BBsmart2@... writes:

>

>

> > He does complain regularly (several times a week) of being

> tired. (Is

> > that

> > common??) That always worries me, I am always afraid something

> is brewing,

> > then nothing...just tired. I will discuss this all with the

> Drs. this

> > month.

> > Also complains of leg pain...((growing pains??? is there such

> a thing?))

> > My other two complain of leg pain also.

> >

>

> Janet:

>

> gets tired, she calls it " droopy " . Somewhat to my shame, I'm

> always on

> the lookout for fake illnesses for attention, especially when she

> doesn't have

> any visible symptoms (fever, congestion, cough, sick-looking). But

> then I'll

> feel terrible when I sort of *test* her and she passes -- I'll

> mention gently

> that if she's sick her friend can't come over or ask if she's too

> sick to walk

> to the corner store together for a treat -- and she'll actually be

> too droopy

> for those special opportunities which I know she'd never give up

> willingly.

> Ooops.

>

> She has had a LOT of these little periods in Kindergarten, tired

> and droopy,

> maybe a low grade temp here and there, not interested in normal

> activity. No

> other symptoms. One thing I've noticed is if I look at her soft

> palate with a

> flashlight I'll see these tiny clear vesicles. Sometimes she'll

> have palpable

> nodes under her jaw. She will usually say she does not have a sore

> throat. So

> I'm thinking with her it's a minor virus, I just don't know why

> she seems to

> keep getting the same thing over and over. One of the first things

> I check when

> she's not feeling well is her mouth. When she has a bacterial

> infection she'll

> often have a strawberry-looking tongue. That's how I found the

> vesicles, or

> maybe I was looking for petechiae on her soft palate when somebody

> in

> Kindergarten had strep.

>

> The nurse made me pick her up from school today for this very

> thing! She was

> droopy and exhausted, her eyes looked like she had to have a fever

> of 102 (the

> nurse's comment), but she had no fever at all.

>

> (mom to , age 6, dairy intolerant-related GERD --

> currently has

> polysaccharide antibody def, previously had transient IgG, IgA, t-

> cell & other

> defs... and also to Kate, age 2-1/2, more dairy intolerant but

> wonderfully

> healthy!)

>

>

>

[Guest guest]

In a message dated 5/3/2005 8:57:49 AM Pacific Standard Time,

uahollem1@... writes:

Every immunologist (that sounds like a ton but we've had one move

and one referral to a university hospital besides our regular immuno) has

said that fatigue is seen alot in CVID patients.

Our Immuno says the same. At first, I disagreed with him saying that

wasn't tired--it seemed like EVER. But now that he's better, I have noticed

that he is tired. His legs bother him sometimes and the week before IVIG he is

also achy. The tired is something I hadn't been noticing because he was so

busy being sick.

Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve

transplant (2003), asthma, Carnitine deficiency, GERD

[Guest guest]

Kim,

Every doctor that we have seen has asked if there is anyone else in the

extended family with infection/immune problems.....Hang in there. I'm

hoping for some sort of answers on Thursday....Will be off line until

the w/e and that will probably be spotty as am going to be working.

Re: Blood Work

All the tiredness has me on edge. I have to say, I try to live normally

with what we have been handed. I think we do a pretty good job.

However, fear is always on the back burner. I don't dwell on it

anymore, it's been 4 years....but it never goes away. When I see those

" Droopy " eyes, I get worried...Is something brewing??? Could something

else be cropping up??? Chris' only medical issues are the CVID and

ADHD. I know many of you deal with a very long list of things...things

that I know he is at higher risk of. I have pediatricians that poo poo

everything and now he's only being seen once a year by the

immunologist...I think thats going to change! I am going to ask them to

at least run his blood work every six months...

Another thing is, I have two nephews (my sister's children). One of

them (3yrs) developed herpetic witlow (spelling?) on his thumb....huge

horrible thing that lasted weeks and weeks when he was less than 1 year

old. Now gets outbreaks of cold sores on his face that are becoming

more and more frequent, instead of fewer and farther between like the

Dr. said....Then his baby brother, 8 mo's old, had wheezed from the time

he was 6 weeks to now...finally went to specialist to find out he has

GERD, Asthma and Allergies. The wheezing is better now after long

rounds of Augmentin, Zantac, Xopenex, and (??the steroid maintenance

one, can't remember the name)... For those of you nurses out there and

anyone else who may know...Do you think there could be a connection. I

hate to sound paranoid, but they never ruled out XLA for Chris....and as

far as CVID goes, I have read it can cluster....Her babies IG levels

were both tested at like 4 months old, which I know is not reliable.

Just curious

if anyone here has any family links. I know chris didn't show any real

signs until he was 4 and went to preschool...before that, maybe a little

sicker than the rest, but nothing alarming. We think I had Selective

IGA deficiency when I was a small child, resolving itself as I hit

middle school. I had pneumonia 4 times, bronchitis EVERY time I got a

sniffle, was very sick ALWAYS, one year missed 35 days of school....Drs.

think it very well could have been, of course no way to be sure now.

Well, I will bring all these issues up at his appointment this month.

But, thanks for letting me get this off my chest. If anyone has any

insight, please share.

Thanks.

Kim, mom to 8 - CVID

Re: Blood Work

> In a message dated 5/3/2005 10:45:29 AM Central Standard Time,

> BBsmart2@... writes:

>

>

> > He does complain regularly (several times a week) of being

> tired. (Is

> > that

> > common??) That always worries me, I am always afraid something

> is brewing,

> > then nothing...just tired. I will discuss this all with the

> Drs. this

> > month.

> > Also complains of leg pain...((growing pains??? is there such

> a thing?))

> > My other two complain of leg pain also.

> >

>

> Janet:

>

> gets tired, she calls it " droopy " . Somewhat to my shame, I'm

> always on

> the lookout for fake illnesses for attention, especially when she

> doesn't have

> any visible symptoms (fever, congestion, cough, sick-looking). But

> then I'll

> feel terrible when I sort of *test* her and she passes -- I'll

> mention gently

> that if she's sick her friend can't come over or ask if she's too

> sick to walk

> to the corner store together for a treat -- and she'll actually be

> too droopy

> for those special opportunities which I know she'd never give up

> willingly.

> Ooops.

>

> She has had a LOT of these little periods in Kindergarten, tired

> and droopy,

> maybe a low grade temp here and there, not interested in normal

> activity. No

> other symptoms. One thing I've noticed is if I look at her soft

> palate with a

> flashlight I'll see these tiny clear vesicles. Sometimes she'll

> have palpable

> nodes under her jaw. She will usually say she does not have a sore

> throat. So

> I'm thinking with her it's a minor virus, I just don't know why

> she seems to

> keep getting the same thing over and over. One of the first things

> I check when

> she's not feeling well is her mouth. When she has a bacterial

> infection she'll

> often have a strawberry-looking tongue. That's how I found the

> vesicles, or

> maybe I was looking for petechiae on her soft palate when somebody

> in

> Kindergarten had strep.

>

> The nurse made me pick her up from school today for this very

> thing! She was

> droopy and exhausted, her eyes looked like she had to have a fever

> of 102 (the

> nurse's comment), but she had no fever at all.

>

> (mom to , age 6, dairy intolerant-related GERD --

> currently has

> polysaccharide antibody def, previously had transient IgG, IgA, t-

> cell & other

> defs... and also to Kate, age 2-1/2, more dairy intolerant but

> wonderfully

> healthy!)

>

>

>

[Guest guest]

My Son also complained of leg pain after his infusion for about a week.

They said it is because the IGG binds to the joints and causes joint pain.

He got tired after the second week, and usually sick also. Not sure if your

child is getting IVIG but this could be some of the explanation, also having

a immune disorder is known for causing trouble with fatigue. Not to scare

you but these children are more prone to autoimmune diseases, such as R.

arthritis, so it should always be checked out when they have trouble with

chronic pain. If everything is OK, then it is probably growing pains like

your other children or a side effect of the IVIG. IF it is the IVIG it may

be helpful to check into sub q, my son never has complained of leg pain

since we changed his to sub q.

Take care

Amy

Re: Blood Work

>Amy and Ursula,

>Thanks for your reply...I just wondered what a standard amount of time was

between check-ups and bloodwork. is pretty healthy now, had about 6

breakthrough infections throughout the year, all mild and resolved easily

with a change in the antibiotic (he takes augmentin twice a day, every day).

He did, however, have elevated liver enzymes over the past couple years, but

not too high. Saw a gastro and he was not concerned unless the numbers went

over 100.

>

>He does complain regularly (several times a week) of being tired. (Is that

common??) That always worries me, I am always afraid something is brewing,

then nothing...just tired. I will discuss this all with the Drs. this

month. Also complains of leg pain...((growing pains??? is there such a

thing?)) My other two complain of leg pain also.

>

>Just curious.

>

>Thanks again. Kim, Mom to - CVID

>

>

> Blood Work

>

>> Hello all!

>>

>> I was wondering...my immunologist would see and order blood

>> work

>> every 6 months since his diagnosis 4 years ago. Sadly, my Dr.

>> passed

>> away suddenly and the new immunologist that took over our case

>> only

>> wants to see us once a year and blood work once a year.

>>

>> I am just curious, how often do you all follow-up with your Drs.

>> and

>> how often is blood work drawn. I, of course, am more comfortable

>> with

>> every 6 months because that is how it was done from the beginning.

>>

>> Change is always difficult, so I was hoping to get an idea of what

>> is

>> standard.

>>

>> The increased risk of cancers always concerned me and bloodwork

>> every

>> 6 months made me feel a little better.

>>

>> I don't post too often, but I want to welcome all the new members

>> to

>> the site. You have found a wonderfully supportive group of people

>> that really do " get it " . I know for me, my circle of friends and

>> family, although very supportive, don't really understand the way

>> everyone here does. I can't say how many times someone on this

>> site

>> expresses my exact thoughts. Welcome to you!

>>

>> Kim, Mom to (8) CVID

>>

>>

>>

>>

>>

>>

>>

[Guest guest]

<fcunsrial@...> wrote:

> a TSH reading over 4 may indicate a sluggish thyroid. I use 2-4 as

the " normal "

Hi,

Thanks for the reply! It appears " Synthroid for life " is what Western

medicine prescribes and suspect it too has side effects like other

prescriptions I've tried that turned out to be rat poison. Therefore,

waking up the thyroid makes sense for my hypersensitive system and

will hunt for a tried and true formulation from the Natural World.

Lee

[Guest guest]

I found out two years ago that my thyroid was sluggish and started taking a

product by Nutraceuticals called GTA-Forte. It helped. Then I ran out and went

to a different practitioner who prescribed a product by Nature's Sunshine, I

think it is simply called " Thyroid Formula " or something like that. You can

look it up on NS's website.

My first practitioner also advised switching to iodized sea salt, putting a

pinch of that salt into my drinking water every day, as well as liberally

salting (to taste) all of my food.

I then took another product by NS that was for the adrenals and thyroid, plus

the Thyroid Activator (that is what it is called, I just remembered). Now I

have just started to take a liquid iodine that has recently become available for

nutritionists to dispense. It is called Iosol by Formula II. It is in a

glycerine base. I just started taking it last Thursday so haven't seen any

effects yet. I am one of those people who don't get help for things until I am

just about dead, then I take supplements until I run out of money, then run on

empty for a few months, then when I am about dead again, then I go back to the

nutritionist. (We don't have a lot of disposable income so supplements are a

luxury.)

My nutrition lady said that this liquid iodine has been sought after for a long

time in nutrition circles and is now available. She told of some good results

from people taking it so hopefully, this will really revitalize my poor thyroid.

I was advised to take four drops per day in 8 oz. of water, then to gradually

increase over the months (five drops a day for a month, then six, etc.).

Hope this help,

Marci

-----Hi,

Thanks for the reply! It appears " Synthroid for life " is what Western

medicine prescribes and suspect it too has side effects like other

prescriptions I've tried that turned out to be rat poison. Therefore,

waking up the thyroid makes sense for my hypersensitive system and

will hunt for a tried and true formulation from the Natural World.

Lee

[Guest guest]

Hi If you can get Biotics try their Thyrostym. This is wha I use in my practice.

Regards

Re: Blood Work

<fcunsrial@...> wrote:

> a TSH reading over 4 may indicate a sluggish thyroid. I use 2-4 as

the " normal "

Hi,

Thanks for the reply! It appears " Synthroid for life " is what Western

medicine prescribes and suspect it too has side effects like other

prescriptions I've tried that turned out to be rat poison. Therefore,

waking up the thyroid makes sense for my hypersensitive system and

will hunt for a tried and true formulation from the Natural World.

Lee

[Guest guest]

dalmudlee wrote:

> Thyroid Help:

>

> Dear group members:

>

> The GP just sent me a report showing TSH is almost to the point where

> I need to be treated (5 or greater). The actual number was 4.77 and

> rechecking TSH in 6 mos. to 1 year was the only follow up suggested

> for this potential problem.

>

> Any tips?

>

> Kind regards,

> Lee

>

That's the old guidelines. In 2003 they changed the #'s to .3 to 3.0 -

your doc needs to get on the ball! At 4.77 you definitely need to be

treated now.

[Guest guest]

mom2gwynn wrote:

> Does anyone know if it is normal for the IGG values in bloodwork to go

> up and down in a PID kid or should they always be off? Her blood work

> IGg totals change?

> ~sarah~

>

They constantly change. That's why most doctors won't prescribe IgG

replacement based on one set of blood work. Katy's changed but always

within a set limit. Her IgG had about a 50 point range, her IgA about

4-6 points. Because it is constantly being manufactured it's always a

few points off up or down. I don't think she's ever got the exact same

reading twice.

Hope that helps,

In His service,

dale

[Guest guest]

In a message dated 4/26/2006 5:19:34 PM Eastern Standard Time,

mputman@... writes:

I found out two years ago that my thyroid was sluggish

Just curious. What were your symptoms?

[Guest guest]

wrote:

your doc needs to get on the ball!

Hi,

Thanks for this WARNing! I'll simply have to get a second opinion from

another doc! After an RN friend reviewed the report and said my

POTASSIUM needs help, I'd be curious what the group members have to

say about a potassium reading of 3.9?

Yours,

Lee

[Guest guest]

Speaking of Candida- has anyone used the product Threelac? I have been

researching Candida on the web and this keeps popping up. I think I am

suffering from candida (after what I have read this morning) and I ran

across the Threelac.

Any opinions?

Wendi

On 4/28/06, kathy matthews <kathymatthews@...> wrote:

> Symptoms are also similar to Candida and/or sugar trouble.

[Guest guest]

The thing about lab tests is that the accepted range for a test can be dependent

upon the lab parameters. Most of the labs I've had done have the range for

potassium to be between 3.5 and 5.5 - 3.9 is on the lower end but not out of

range (if they are on the same scale as mine). And also sometimes other things

out of whack can affect results of tests. You really have to look at the whole

picture not just a single parameter.

if you are concerned about low potassium you should look to food sources first

before resorting to supplementation. Potassium (as well as magnesium) *can*

affect the heart rythm balance.

Depending on blood type, allergies, etc. good sources are seeds (pumpkin

especially - try Pumpkorn they're awesome).. fish (cod, tuna), bananas (of

course), sweet potato, spinach, melons, orange veggies (squash, carrots).

dalmudlee <pfourier@...> wrote:

Hi,

Thanks for this WARNing! I'll simply have to get a second opinion from

another doc! After an RN friend reviewed the report and said my

POTASSIUM needs help, I'd be curious what the group members have to

say about a potassium reading of 3.9?

---------------------------------

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using

Messenger with Voice.

[Guest guest]

I just heard someone comment that they tried it and thought it helped. The

things I list earlier for candida, have had many people use and report good

results.

Wendi <ajmomk@...> wrote:

Speaking of Candida- has anyone used the product Threelac? I have been

researching Candida on the web and this keeps popping up. I think I am

suffering from candida (after what I have read this morning) and I ran

across the Threelac.

Any opinions?

Wendi

On 4/28/06, kathy matthews <kathymatthews@...> wrote:

> Symptoms are also similar to Candida and/or sugar trouble.

---------------------------------

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1 & cent;/min.

[Guest guest]

> After an RN friend reviewed the report and said my

> POTASSIUM needs help, I'd be curious what the group members have to

> say about a potassium reading of 3.9?

I watch my potassium level all the time - and if there was a home

monitor for it I'd be first in line.

I feel best when it is about 4.0 to 4.5. when it drops below 3.8 I feel

faint, and my blood pressure goes up. If it gets down to 3.4 I look

drunk and have heart attacks.

My mom died of a heart attack induced by too low potassium. I inherited

the kidney defect she had, in which potassium is pumped out instead of

sodium. So I take a Rx of Potassium five times a day. the five doses is

to ensure my heart does not get a kick in the pants due to a too high

dose all at once.

I've never had my potassium higher than 4.5 and doctors tend to freak

out if potassium looks in the upper half of normal. they seem to think

it is not a good idea but their fears are not so well supported in

research as far as I can find. the body has a mechanism for tossing out

excess. However the fear of high potassium in USa has caused FDA to

limit potassium, supplements to 99mg max each. That's a suitable

supplement size for a 10 lb cat to take once or twice a day:-))

You can get 500mg from a glass of fresh red grapefruit juice.

Prescription potassium comes in 10 Milli-equivalent units per capsule -

which is roughly 800mg - and the maximum dose for someone short of

potassium at a time is 2 or 3 of those, namely about 1600 to 2400 mg in

a single dose.

So supplements of 99mg are a bit of a joke as you can see.

Keeping potassium at a proper level is relevant - but see if diet will

do it. Less sodium, for example. The lab values are the same everywhere

as potassium is a very critical blood element, and not something that

varies from one city to another as many lab values do.

Till recently the upper " normal " for potassium was listed somewhat lower

- I think 5.2 - part of the paranoia the medical profession has had

about potassium in USA.

Namaste,

Irene

--

Irene de Villiers, B.Sc AASCA MCSSA D.I.Hom/D.Vet.Hom.

P.O. Box 4703 Spokane WA 99220.

www.angelfire.com/fl/furryboots/clickhere.html (Veterinary Homeopath.)

" Man who say it cannot be done should not interrupt one doing it. "

[Guest guest]

dalmudlee wrote:

> wrote:

> You can also buy a special kind of Iodine

> that you can drink in drops but you would need counseling for that.

Why not just nosh Nori?

Tastes great and is very nutritious for not just Iodine - and being a

natural source you won't overdo it.

For teeth it is great too. Iodine is what is supposed to make teeth

strong - like the thyroid - teeth only use Fluoride if there is not

enough Iodine available.

Fluoride of course is toxic stuff.

....IRene

--

Irene de Villiers, B.Sc AASCA MCSSA D.I.Hom/D.Vet.Hom.

P.O. Box 4703 Spokane WA 99220.

www.angelfire.com/fl/furryboots/clickhere.html (Veterinary Homeopath.)

" Man who say it cannot be done should not interrupt one doing it. "

[Guest guest]

In a message dated 6/10/2006 3:48:05 AM Eastern Standard Time,

furryboots@... writes:

Till recently the upper " normal " for potassium was listed somewhat lower

- I think 5.2 - part of the paranoia the medical profession has had

about potassium in USA.

LOL-I went into my kidney specialists and had a 5.5 (a little high for me).

He about shit himself. I had been taking 20meq a day because low K lowers my

pulse rate about 10 points and gives me heart VTs in my sleep and I wake up

gasping for breath. High K gives me a terrible headache so I vary my dose based

on how I feel. I'd be in line right behind you if they had a home test.

Doctors are afraid they'll get sued.

[Guest guest]

Ellyn

Not sure what your concern is?

Your child's is 9?

GGT is an enzyme found mainly in the liver; it is very sensitive to changes in

liver function. It is normally present in low levels in the blood. When the

liver is injured or obstructed, the GGT level rises. It is the most sensitive

liver enzyme in detecting bile duct problems. A rise in GGT can occur even when

there is no identifiable cause that is related to liver disease.

GGT levels might be elevated for a number of reasons, including conditions like

hepatitis, diabetes, pancreatic disease, kidney failure or the presence of a

gallstone or tumor. But certain medications (and, as you noted, alcohol) also

can also elevate the GGT, even in circumstances where the liver hasn't been

injured. If you smoke or take alcohol or medications within 24 hours of your

test, even that can temporarily elevate your results.

The normal range is 0 to 51 IU/L. This depends on age and sex.

A level of 9 is normal in a pediatric patient.

Fran

Fran Bulone RN

Mom to ph 7yr

Waxhaw NC

/

[Guest guest]

Hi Ellyn,

Its been awhile I had my shoulder surgery and trying to recover from

it. You say you just got those labs this weekend, didnt the NIH go

over them or have you been back again recently? When is your next

trip there? Have you called the NIH doctors and talked to them.

Take care

Sacora

>

> Fran,

>

> I just got these labs from NIH in the mail over the weekend.

> I'm hoping you can shed some light on these lab tests for me.

> I'm only listing those that marked with an asterick and were shown

to be

> out of range.

>

> CREAT mg/dl - 0.5

> URIC AC mg/dl - 3.2

> GGT units/L - 9

> IG A mg/dl - 77

> POLYS% - 36.0

> RDW% - 15.6

> HAPTO mg/dl - 27

>

> I'm most concerned with the GGT because as far as I can tell it has

> something to do with the liver,

> and is on cimetidine.

>

> Thanks for any insight,

>

>

>

> Ellyn

> Mom of (Periodic Fever) (5),

> Alyssa(8), and Kate(4)

> Philadelphia, PA

>

>

>

>

>

>

[Guest guest]

Sacora,

The labs Ellyn is asking about, are standard labs done on a physical or when a

child is fevering.... at a regular doctors office... Just thought you should

know. These are not the important genetic or specialty labs...

Fran

PS... hope you are healing... I had two shoulder surgeries and they are

difficult!

God Bless

Fran

Fran Bulone RN

Mom to ph 7yr

Waxhaw NC

/

[Guest guest]

Sacora,

Hi! How is your shoulder feeling?

No one from NIH has called me about 's blood work.

's GI dr. asked me to get copies, so I sent a request for copies to

NIH.

But other than that I've heard nothing.

I think the switch back to Beverly from has delayed things at NIH

I called to schedule an appointment the day that Beverly went on vacation

and she gets back today.

Hopefully I'll hear from her soon.

Ellyn

Mom of (Periodic Fever) (5),

Alyssa(8), and Kate(4)

Philadelphia, PA

" Sacora " <sacoracasselman@...>

Sent by:

08/28/2006 12:42 PM

Please respond to

cc:

Subject: Re: blood work

Hi Ellyn,

Its been awhile I had my shoulder surgery and trying to recover from

it. You say you just got those labs this weekend, didnt the NIH go

over them or have you been back again recently? When is your next

trip there? Have you called the NIH doctors and talked to them.

Take care

Sacora

>

> Fran,

>

> I just got these labs from NIH in the mail over the weekend.

> I'm hoping you can shed some light on these lab tests for me.

> I'm only listing those that marked with an asterick and were shown

to be

> out of range.

>

> CREAT mg/dl - 0.5

> URIC AC mg/dl - 3.2

> GGT units/L - 9

> IG A mg/dl - 77

> POLYS% - 36.0

> RDW% - 15.6

> HAPTO mg/dl - 27

>

> I'm most concerned with the GGT because as far as I can tell it has

> something to do with the liver,

> and is on cimetidine.

>

> Thanks for any insight,

>

>

>

> Ellyn

> Mom of (Periodic Fever) (5),

> Alyssa(8), and Kate(4)

> Philadelphia, PA

>

>

>

>

>

>

[Guest guest]

I wanted to know whether I should be concerned. All the results that I listed

were marked as being out of

range.

I requested copies of his blood work so that I could get them to 's

various Drs.

Except for fullfilling this request I haven't heard anything (except for

telling me Beverly will now be handling) from NIH and rather than

sitting around worrying for no reason I thought I'd ask.

I don't recall saying anything about alcohol - as I'm sure in a 5 year old

this isn't a concern.

I'm sorry to have bothered you!

" Fran Bulone " <fbulone@...>

Sent by:

08/28/2006 11:03 AM

Please respond to

< >

cc:

Subject: Re: blood work

Ellyn

Not sure what your concern is?

Your child's is 9?

GGT is an enzyme found mainly in the liver; it is very sensitive to

changes in liver function. It is normally present in low levels in the

blood. When the liver is injured or obstructed, the GGT level rises. It is

the most sensitive liver enzyme in detecting bile duct problems. A rise in

GGT can occur even when there is no identifiable cause that is related to

liver disease.

GGT levels might be elevated for a number of reasons, including conditions

like hepatitis, diabetes, pancreatic disease, kidney failure or the

presence of a gallstone or tumor. But certain medications (and, as you

noted, alcohol) also can also elevate the GGT, even in circumstances where

the liver hasn't been injured. If you smoke or take alcohol or medications

within 24 hours of your test, even that can temporarily elevate your

results.

The normal range is 0 to 51 IU/L. This depends on age and sex.

A level of 9 is normal in a pediatric patient.

Fran

Fran Bulone RN

Mom to ph 7yr

Waxhaw NC

/

[Guest guest]

Ellyn

No bother at all!

Just wondering which result you were concerned about.

They are not really abnormal.

THere is a slight shift in differential which is normal... with fever kids...

And the liver studies are not abnormal.

I forwarded you the actual lab data from the NIH website... and if you look at

the numbers they are relatively normal. The GGT is VERY normal for a pediatric

patient.

The lab studies are usually showing results for an adult blood test and you need

to adjust for pediatrics....

The reason I asked what your concern is is because I was unsure what you were

asking. As I scanned them they were not abnormal to me... When a test comes back

and you look at it, lots of things may be a few points high or low on a test....

but that is insignificant.

I am sorry you think you need to apologize however I am answering hundreds of

emails in a few days and it is difficult to not answer quickly.... If you are

offended there was no malice. I have answered 77 emails so far today and I am

working a full time job on my computer from home. I try to answer promptly.

I am going to lay low the rest of the week... LOL

Everyone help each other and search the files.

I need to chill... I feel like I am doing too much if I hurt Ellyn's feelings.

God Bless

Fran

Fran Bulone RN

Mom to ph 7yr

Waxhaw NC

/

[Guest guest]

OOOOppps Ellyn bout the alcohol. I get all of my research lab data from the NIH

lab site... and that was quoted from their site. Same with the second email

regarding the IGA studies.. I added more info for members on the second email

including the normal values for other immunoglobulins... all sited from the NIH

site.

Just to clarify... that was not meant for your small son. The site was referring

AGAIN to adults who have ELEVATED studies which MAY be caused from NUMEROUS

factors ONE being alcohol.

I think I am going to DEFER ALL lab questions back to your physicians.

Seems to be to confusing as a medical professional.... trying to explain these

issues through an email.

Soooo in the future... to all our members... ask your doctor about the lab

studies.

I do NOT want to confuse or misinform or hurt anyone's feelings when I need

clarification.

God Bless... Again!!

<smile>

Fran

Fran Bulone RN

Mom to ph 7yr

Waxhaw NC

/