Barbie

[Guest guest]

Barbie: I hope things are calming down at your house and everyone is feeling

better. We've never experienced croup (I know, don't SAY that!!!) but it

sounds awful.

I hope you're feeling better as well. My sister is having similar troubles.

She has the polycystic ovarian syndrome and is having increasing problems

with sugar/insulin. They wanted her to lose a certain amount of weight (she

was not super heavy or anything) and when she fell a little short they

started her on some meds relating to diabetes -- I'm sorry I don't know what

though. She was not " true " diabetic though. Seems like the whole syndrome is

a bit mysterious... I personally am flummoxed about how all those things are

related and yet they all go hand-in-hand with PCOS, don't they.

I hope you're following your own health issues closely, and not just worrying

about your kids. Take care of yourself!

(mom to , age 3, polysaccharide antibody def)

[Guest guest]

Barbie:

Thank you for your wonderful e-mail! To answer your questions, I went to my

doc when I was crampy all morning, because it was during office hours. They

did a non-stress test and no contractions showed up and baby's heart looked

fine, plus I was not dilated at all. I assume that's why they didn't consider

meds, they probably considered it " false " labor or whatever. I just know that

last time with a NST showed an " irritable uterus " and I was in labor a

few days later. I guess my uterus didn't look irritable (can't say the same

for the owner).

The cramping or contractions are not consistent or very frequent. I'll have

maybe a " real " take-your-breath-away contraction once or twice every 1 - 4

days, some Braxton Hicks tightening every day, and the crampy stuff in vague

clusters every few days. It was when it kept up all morning that I went in

just to be sure. I don't/didn't have back pain but did have diarrhea, another

reason I went in. I had diarrhea when I was in real labor with . Plus

I'm on slowFE for anemia, so I figure diarrhea shouldn't even be in my

vocabulary. But I'm still having it every couple of days. It's nerve racking

because the cramps that come with the diarrhea remind you of labor, you know?

Thank you for telling me that if anything is happening to my cervix

consistently that I can demand a plan. I was 90% effaced (not dilated at all)

when I was put on bed rest with at 29 weeks, and went into labor four

days later. Amazing that I made it another four weeks.

You're right about that silly " I didn't want to bother anyone " . I did that

last time at 30 weeks, it was the middle of the night before Christmas

morning. I lay there all night wondering what was going on, when I should

have been calling. I waited until the civilized hour of 7am, but now I

realize that was so silly. I won't do that again. What if it was too late by

then?

One of the docs told me this time, " I don't care if it's 3am and you're not

sure what's going on, I want you to call " .

I'm not sure why the gallon of water. I seem to have concentrated urine

easily, I'll think I'm drinking enough but unless I do the constant chugging

I can't get it clear.

I have to tell you, the move from our corp apartment back to the condo after

it was done being remediated was the nicest move ever. I was just off bedrest

at 16 weeks so there was no way I was doing anything. The girls from the

remediators came and packed us, loaded up the truck, and we went off to have

a leisurely lunch while they unloaded into our condo! By the time we got back

from lunch the truck was unloaded!!! We've always moved ourselves before.

Unpacking wasn't as bad as I thought, I was a good girl. I'm normally the

type to want to be completely unpacked and moved in the same day. But I

didn't do that at 16 weeks and I'm certainly not doing it at 32. I figure,

worse comes to worst, we live out of boxes for a few weeks and when I'm full

term (please God), I can finish unpacking, and going into labor then will be

just fine!

Sorry this is long and off topic, I wanted to answer your questions and I've

been quiet lately so I'm making up for lost time!

(mom to , age 3. Currently has polysaccharide antibody def,

previously had transient IgG, IgA, t-cell & other defs)

[Guest guest]

. You now have the idea. Every week is a blessing for the baby. 30-32

weeks babies can do well but, you usually have 3-5 weeks in the hospital. At

34 weeks, you have about 2-4 weeks in the hospital. At 35-36 weeks you

usually have less than a week in the hospital. At 37+ the baby goes home in

24-48 hours go figure that just another 4-5 weeks put you in a really safe

zone. Just pace yourself psychologically that your baby is not to come until

37 wks. In your daily thoughts say 37 wks 37 wks. Only one more month. I

have been amazed over the years to see when we tell parents that they can

come off of berets at 35 wks and the next day they go into labor. How could

it be so different from the day before? The only thing I can think is that it

is mind over matter. Keep us encouraging you. Also the number one best

thing you can do for this baby whether they have an immune deficiency or not

is to get breastfeeding going. Your milk can provide so much to hold off the

infections until the babies immune system is more mature. I am not saying

that it will prevent the problems but it decreases the risks of serious

illness such as meningitis dramatically. For every hospitalized baby that is

breastfed there will be 1000 bottle fed babies hospitalized. Science is

proving that God had things figured out when it comes to feeding our babies.

For anyone who might think I am saying that we are bad moms because we did

not breastfeed, hear that what I am saying is that with new information it

may be a very serious consideration especially with kids that have immune

deficiencies. (My kids are both adopted, I nursed but only had a small

milk supply but it was worth the effort. ) Take this as you need. I am

excited for you and would love to support you in any way that is possible.

BARBIE (Lucas 6, dysgam, hypogam, asthma, sensory integration, Bipolar)

[Guest guest]

. You now have the idea. Every week is a blessing for the baby. 30-32

weeks babies can do well but, you usually have 3-5 weeks in the hospital. At

34 weeks, you have about 2-4 weeks in the hospital. At 35-36 weeks you

usually have less than a week in the hospital. At 37+ the baby goes home in

24-48 hours go figure that just another 4-5 weeks put you in a really safe

zone. Just pace yourself psychologically that your baby is not to come until

37 wks. In your daily thoughts say 37 wks 37 wks. Only one more month. I

have been amazed over the years to see when we tell parents that they can

come off of berets at 35 wks and the next day they go into labor. How could

it be so different from the day before? The only thing I can think is that it

is mind over matter. Keep us encouraging you. Also the number one best

thing you can do for this baby whether they have an immune deficiency or not

is to get breastfeeding going. Your milk can provide so much to hold off the

infections until the babies immune system is more mature. I am not saying

that it will prevent the problems but it decreases the risks of serious

illness such as meningitis dramatically. For every hospitalized baby that is

breastfed there will be 1000 bottle fed babies hospitalized. Science is

proving that God had things figured out when it comes to feeding our babies.

For anyone who might think I am saying that we are bad moms because we did

not breastfeed, hear that what I am saying is that with new information it

may be a very serious consideration especially with kids that have immune

deficiencies. (My kids are both adopted, I nursed but only had a small

milk supply but it was worth the effort. ) Take this as you need. I am

excited for you and would love to support you in any way that is possible.

BARBIE (Lucas 6, dysgam, hypogam, asthma, sensory integration, Bipolar)

[Guest guest]

Yes, it is the only vaccine Lucas gets at this point. I have found that

sometimes the docs forget inadvertantly. I had to ask twice last year. My

understanding is that the flu vaccine is made from viruses from the previous

winter( our summer) in the down under. They have a way of miagrating to the

West. Flu vaccines are different each year since the strains change. I was

talking to our immuno today during Lucas infusion and he apologized for not

having drawn some labs for cell functions. I asked him about T cell

functions and his first answer was so even if we find something wrong then

what are we going to do about it. Today I asked him again and we looked

through his charts and found that he had not done the testing. I am

appreciative that he looked at Lucas clinical status first and the testing

later and went ahead with just the B cell antibody responses and the Immune

globulin levels. So we will be driving to Seattle so that we can have the

best chance for the Labs to be accurate ( by not transporting the blood) .

We are going to do Tcell, B cell antigens and mitogen tests, and titers for

Hep A, B and C , HIV as well as Tetanus and Diptheria. Anyone think of

anything else? He did tell us for the first time today that he does not

believe that Lucas is going to outgrow his problems. Before he has really

hedged to just wait and see. He has become a good friend and I feel very

fortunate to have someone so talented and interested in immunology.

Also, Ray, I mentioned National Jewish and he had an interesting

comment. He said he believes that they are missing the humanity side of

things. They have gotten into so much research and are sometimes forgetting

the quality of life issues and therefore not starting kids on IVIg when they

may very well benefit from it. (he trained there about 15-20 years ago. ) He

also named a researcher from there that was his mentor who made it a practice

to listen to moms and patients because they really know what they are talking

about. I find he is wonderful about this in his practice. I could go on

all day about him but I feel well supported. BARBIE ( Lucas,6 hypogamm,

dysgamm, SID, Bipolar etc, etc.)

[Guest guest]

Barbie - did he say how the B cell studies would be accurate with Lucas on IVIG?

Will the Hep titers be IgM or IgG

antibody screens? Also won't the tetanus and diptheria levels be only a

reflection of what he's getting from infusion

and not what he's producing himself? We have been told that bcell studies

(basically any level that deals with an

antibody level) were never accurate. Several years ago they ran Hep titers on

Macey because of the risk of transmission

with the IVIG. What they failed to remember was that of course IgG antibody

titers would be high because of the donor

pool. They were jumping through hoops and all worried until our immunologist

reminded them (local ped GI and

pediatrician) that the studies would need to be IgM based so that we could see

if it was Macey with the Hep or the

donors. I would just hate to see you waste all that money on bcell studies if

they're false because of the passive

immunity from the IVIG.

Ursula Holleman

Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Sensory

Integration Disorder, Diabetes Insipidus, colonic

inertia)

http://maceyh.home.att.net

/

[Guest guest]

Barbie:

Thanks for the breastfeeding info! I remember in the hospital with when

she was being force-fed, I'd pump and get literally like four drops of

colostrum. I would sit there and tap and tap and tap and tap to get every

last molecule into a bottle for them, and hope and pray they would " really "

give it to with the formula.

Might as well ask this question now. I've never seen this in ANY book. With

, whenever I would let-down, I would have waves of nausea. This went on

pretty much the whole 13 months I nursed, but it was less pronounced later

on. Ever hear of that?

Tomorrow is the first day of week 35!! It's been a busy week with quite a few

contractions (but nothing regular or too often, thankfully), so cross your

fingers! Getting that much closer.... I'm still praying for full term!

(mom to , age 3-1/2. Currently has polysaccharide antibody def,

previously had transient IgG, IgA, t-cell & other defs)

[Guest guest]

Hi , I have not heard of nausea with letdown but it could be a hormonal

thing. I will look it up tomorrow to see if anyone else has heard of it. I

am so excited for you to have gotten to 35 weeks just a few more weeks to

cook and you are home free. Again please feel free to contact me anytime

through the group or privately. I would love to be there for you. BARBIE

[Guest guest]

Thanks for your response, Barbie! I'd love to know I'm not the only one who

got nausea during letdown.

I'm pretty excited about having gotten this far, my fun thing to say is " I've

never been this pregnant before! "

It's been a busy week but I've had lots of help. You'll relate -- the mold

remediation contractor brought the rest of our stuff from the warehouse,

basically a two-car garage FULL of boxes on Monday. It was so discouraging. I

was sitting in a chair in the garage and they would bring me one box at a

time, I'd pick through it and pull out the many things I didn't want back. We

were told by the environmental testing firm that we could not have back

anything porous, stuffed, plush or padded because of 's immune disorder.

So there were things in every box that although they had been cleaned, were

not considered safe to keep. What a day. But they came back the following day

too and unpacked and put away about 90%!!! My mom came from three hours away

(surprise!) to help me unpack the rest and wash a lot of things. Plastics and

laminates retain the mold smell, so we've done a lot of bleaching to try to

get the smell out. I never wanted to smell that odor again (sickening sweet

mold), but it looks like I can't completely get it out of my life. There's

only one box missing that I can determine, but unfortunately it's NEWBORN

clothes and some crib hardware and baby decor. Figures, huh?

So it's been hectic but it's almost done and we're pretty ready for the baby.

No crib but we don't need one for three months anyway. I got a bedside

co-sleeper this time, I really really wanted one with but couldn't pull

the trigger on the cost. My mom and one of my sisters offered to get it for

us this time. Yeah! I really did not need the hassle of all the mold worry

and work, and continue to wonder when the lingering effects of that nightmare

will end. Tomorrow I copy all the materials for the lawsuit and meet with the

attorney maybe Monday. I sure hope we get something from all this, we

certainly deserve it. I'm tired of feeling like a victim from all this

turmoil, you know?

Well, I'm rambling. I should have posted this to you privately, but too late

now. Sorry to everybody else!

(mom to , age 3-1/2. Currently has polysaccharide antibody def,

previously had transient IgG, IgA, t-cell & other defs)

[Guest guest]

I will sit down tonight and give you more. But to start Lucas initially had

to get use to it. And yes it is fantastic when it begins to work well . It is

relatively safe. It is not like whole blood and has gone through a much more

thorough cleansing. Yes there are risks but we had to decide that the benefit

outways the risks. I will get you mor later. BARBIE

[Guest guest]

In a message dated 1/3/2003 10:41:26 PM Central Standard Time,

MOTHER1544@... writes:

> I attempted to cut off my finger on Christmas day

Barbie:

Hey, let's get together next holiday and we can just hold our dinners in the

E.R. and be done with it!! Hope your finger's better -- my toe is not that

great and doc hasn't called yet with the results of the follow up x-ray to

see how the break is healing. At least it's only the pinkie toe!

I'm quite the site hobbling around with Kate in her maya baby sling and

dragging everywhere -- people sometimes try to help me with things

because I appear so incompetent!

(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 will have to try that with . He will enjoy a coke! How much does Lucas

weigh and How many grams of IG does Lucas get? le

[Guest guest]

Lucas weighs 72lbs. He is only 7 years old but some of the meds for his mood

disorders caused him to gain 18 lbs in 6 weeks. It is really hard to see him

with all the extra weight because it slows him down. He receives 15gms and we

are looking for an increase sometime this fall. Our doc doses on the higher

end based on symptoms. BARBIE

[Guest guest]

Jessie: I loved this!!! So I may be in the dark ages, but are these for real

or did you make them up?

Date: Wed, 13 Jul 2005 08:41:10 -0700

From: " Jessie Ahroni "

Subject: Barbie

__________________________________________________

[Guest guest]

Hi Barbie,

Hearing is noise is always difficult for everyone, with a CI or with

typical hearing. The reason is your brain filters out what you need to

listen to (voices around you) and what you can ignore (all the other

noise in the background). If you grew up not hearing, you never learned

how to do this. So, once you start hearing with the implant, your brain

has to learn how to filter out the unnecessary noise. It is a brain

function, NOT a hearing function. Even folks who heard for a long time

and then lost hearing, have to relearn it.

Because you were deafened early in life, it will take you longer to

learn how to hear with the implant. Make sure you seat yourself to

optimize your hearing. Face the person you are talking to and read his

or her lips along with listening. Make sure they are in good light, and

not covering their mouth with their hand. See about more AV therapy.

All will help.

But an implant is not like a hearing aid. You don't put it on and

suddenly hear like a person who has never been deaf.

The Original

Subject: Re: Barbie

i don't know but i did had therapy that was doing with my speach

language. i learn how to listen when it real quiet but when their noice

round that when i get confuse n frustrate. n hard time of understanding.

barbie

[Guest guest]

thanks Sandi, I had a nightmare day trying to advocate for my son at the Glucose

tolerance Test. NO problem doing it but nothing makes me matter than a half

trained person says " well that is what we do it and that is protocol but will

or cannot tell me why. And then when the doctor does the same thing then I begin

to hit the roof. Basically, he has had 8 abnormal blood sugars on my meter and

one normal at the lab after a quite high fasting sugar 285. It was only 90 and

that is normal but he had a protein shake 1 hour before the normal. The thing is

that if my meter is wrong than I should be at about 20 and I should not be

basing my insulin on it. Anyway, they drew him and said they would send out the

blood (2+hours) and then immediately told him to drink the 75gms of glucose with

no baseline results. I said I wanted a baseline before we added the glucose. The

doctor said Oh it won't hurt him . My problem is that I do not like anywhere

that would have

such a protocol. No I was not so concerned for my son because I do think he is

Type 2 from a med he took for Bipolar but I would be very concerned for the

standard kid. I am very concerned about the protocol. I used my monitor and his

fasting at 11am with 13hours fasting was 150 and 1 hr later was 205. They only

drew a fasting and a 2 hour. I will do more research but it really frustrated me

that they could not even pull up a protocol in the computer. Not being run very

safely as far as I am concerned. I am diabetic and also have worked Peds for 25

years Do NOT EVER tell me that that is just what we do or it is protocol . Not

in this day and age of mistakes and use of MAs instead of RNs in doctors

offices. SOAP BOX time......

BARBIE

Barbie

Do any of your kids have Diabetes as well as CVID?????

Barbie,

Bri has hypoglocemia which we are keeping an eye on as I'm told it can turn

into Diabetes. He really has a difficult time when he doesn't eat enough or the

right food (like at school). I have always thought this is because he is so

thin, but Ped isn't sure.

Sandi, Mom to , age 15--CVID