questions

[Guest guest]

>Does anyone else

>wake up with an extremally puffy face when they fall asleep for more

>than 20 min? Thanks everyone! Good luck, those of you with the sick

>little ones!

>Kelsey

I dont know about the time limit, but I often would wake up with a swollen

face. Much of it seemed to be caused by any blowing on my face (either a

draft or the forced air heat in my apartment). Dust mites also seemed to be

a problem, as when I put covers on my bed, things got incrementally better.

And once I finally got my eczema under control with my diet, the combination

of all 3 tacts finally leave me pretty normal these days, and puffy faces

are relatively rare these days.

Kenny

[Guest guest]

<<

First - Who are Roland and Paolo? Their debate is interesting, but are they

doctors, scientists, or what?

Second - Are CJDVoice, CJD Watch, and the CJD Foundation affiliated at all?

And if not, why not? >>

Roland & Paolo are scientists on the BSE-L list (a discussion group consisting

of primarily scientists)

CJD Voice is a support/discussion group with the

http://members.aol.com/larmstr853/cjdvoice/cjdvoice.htm " >CJD Voice

homepage. CJD Watch is a site started to track the incidence of cases,

there is also a discussion group (most of them are members of CJD Voice). The

CJD Foundation is run by Cele & Myra down in Florida and are incorporated only

in the state of Florida. They primarily support others thru snail mail. They

are also set up to accept donations for research. We all work together in

every area we can. I don't know if this helps or not.... but I think it

answers your questions. Liz.

[Guest guest]

Would we have to form another foundation or can we join with Flordia and try

to make it national.

Bill

[Guest guest]

Regarding blood donors and CJD, I have had exactly the same question. If CJD

is so rare, then why are these few donors affecting the blood supply so

drastically?

I have posed this question to friends in the healthcare business and the best

answer I can come up with is that when a CJD victim donates blood, it is mixed

with other donor's blood. Therefore, it could potentially contaminate an

entire lot of blood.

I understand that there are going to be times when CJD victims donate blood

before they are symptomatic, but it seems to me that if blood banks were

smart, they would " quarantine " their blood supplies for a specific time period

in order to catch illnesses that might pop up in their donors. Every blood

bank codes and records where each batch comes from -- it shouldn't be hard to

trace.

Now, I will give you my cynic's opinion about these blood shortages. When I

was a kid, there were blood mobiles on every street corner. Every church,

school and business had regular blood drives. The blood banks would make it

convenient to donate by coming to the donor. Now, these blood banks have

incredibly plush offices (I participated in a real estate sale a few years ago

to a blood bank and they have PLENTY of money!!) and I see few, if any, ads

about blood drives. Most people won't actively pursue donating blood - we are

too busy and it just isn't convenient sometimes. Therefore, the shortage

exists. However, I do see plasma donation offices on every corner where they

are paying for blood -- doesn't it seem that there would be an adequate supply

(even though the quality of blood might not be great since the type of people

who sell plasma are probably down on their luck!!).

It doesn't add up.

Beverly G.

[Guest guest]

Frances, I am , you probably read my introduction. I feel as you do

about the blood products. It is very scary for me since I must be on IVIG

(human immune globulin) for the rest of my life. I have already received one

recall notice, which I shouldn't have received if they were doing their job,

and I fear that I will receive many more. The donor for the lot of

Sandoglobulin that I received, died of CJD. Sandoglobulin comes from the

Swiss Red Cross. May be one day they will be completely honest with the

public. Anyway, I am as frustrated as you seem to be.

[Guest guest]

Moons writes:

If there are so few CJD patients, why would they be so

afraid of a blood shortage by just pulling those blood

products? I mean they say 1 in million?

ANSWER:With blood it is pooled and therefore one donation could affect an

insurmountable amount of blood pools. From one donation alone 525 people

were given recall notices at ONE hospital in southern Ontario. After

looking up a press release at the time of my son's recall it affected

60,000 liters of albumin product. I believe that another recall affected

200,000 people.

Moon writes:

Is it only people who give blood that get CJD? It seems

that alot of cjd patients have been blood donors.

ANSWER: In my readings and contacts NOT all CJD patients are blood donors.

Moon writes:

This one really worries me! " finally, Bayer says it's

manufacturing process is so sophisticated that it

can reduce the prions from a cjd infected donation

to negligiable levels by the time products are fractionated " .

If they can reduce to proins in a donation- why can't it be reduced in a

patient? Maybe they deserve the noble prize, if they are

able to disinfect it! This makes me wonder if they " know "

that it is in the blood and blood products.

ANSWER; I know from studies done by Dr Rohwer that infectivity is decreased

just by the fractioning process alone. Leukodepletion is another new way

that they are supposing to decrease the level of infectivity. Blood is a

matter I don't think the scientists/researchers understand which is why

many were on the fence for so many years about what to do with the blood

that came from donors who had CJD. And why the uncertainty exists for

those who received the product.

Moon writes: If I were a person who needed the blood products, I

would want the option to deny a cjd patients blood,

they have the RIGHT!

ANSWER: An option I firmly believe that we should have that right, we

should know beforehand. They still have not labelled the blood as they

suggested they were going to.

Moon writes: but they

can turn around and say, well it doesn't come from blood,

If they KNOW that, then they know more than they

are willing to share.

ANSWER: It is not that they know more but that they assume

more........MORE than they are willing to agree to. Since the December

release of Mr McKewans' blood I have written every official I know and have

asked the question what NEW scientific information have they found out to

say classical CJD is NOT transmitted in blood. NOT one official has

supplied such data. It seems blood shortages and the all mighty dollar is

their major concern.

I must add that NO cases have been found by blood transfusion. But as I

have said all along exactly what do they know about CJD, and how can they

dismiss such a form of transmission.

Frustrated Too!!!

a G.

[Guest guest]

Hey, Trish,

We do not use any sitters other than family. That said, however, our

family actually asks if they can take the kids. We have actually had

to say " Enough is enough! We'd like the boys home with us for a

weekend for a change! " Aren't we lucky? LOL

When Jake goes to preschool or a friend's house, I simply tell them

not to feed him (aside - one time I wanted to get my husband Jeff

going, so I told him that I was going to design a button - I'm a

graphic designer - for Jake to wear that said " Please don't feed me "

and Jeff FLIPPED - " My God, he's not a zoo animal!!! " Needless to

say, I started laughing hysterically, and Jeff was less than amused!)

But seriously, I ask parents/school teachers to please not feed him

unless it is fresh fruit/veggie or 100% juice. Other than that, they

must ask me first.

And, I always pack him his lunchbox filled with snacks and lunch type

things, so he always has something to eat and parents/family/teachers

aren't stressed over what they can and cannot give him. Jake was over

my next door neighbor's house last week, and she made all the kids

popcorn (can't have because of butter) and she gave him a banana. He

was fine with it, she was fine with it, everyone's happy. So it can be

done.

Would I trust him with a teenage sitter? Well, I sometimes leave them

with my 16yo niece, and I tell her point blank, " Do not feed him

*anything* other than what is in the lunchbox " and I even put juice

boxes in there, so there is simply NO room for error.

HTH!

Love,

Heidi

> Do any of you have regular sitters for your kids- other than family?

> If you do- what kind of " training " process did you go through.

>

> As I mentioned earlier- Sam is anaphylaxic to eggs and very severe to

> milk. He has peanuts, soy, and tomatoes that he was tested for at

> 10mo and then about 2 wks ago we did more testing- ALL tree nuts and

> very severe to fish. So we have him on a special formula- Neocate

> (has anyone else used it- MAN it must be gold at $37 a can)! We have

> epi-pens here (and with us always) and he is on a breathing

> treatment. We believe he has asthma, BUT since the cold and flu

> season is about done, he has been healthy and out of the hospital (we

> were in twice in less than a month). So needless to say, I'm a bit

> paranoid about leaving him with someone. That said, we have used our

> family so much we hate to use them any more- add to that I'm about to

> become a surrogate for a friend of mine. Transfer is only 2wks away

> (so we will need them more)! Anywhooo........I need a break and need

> to know what you guys did/do. LOL Ok- that quick question turned

> into a book!

>

> Trish

[Guest guest]

Hi Tricia,

We only use my mom for a babysitter lol..I don't trust anyone else lol. I also give you a lot of credit for being a surrogate mother. Wow. I couldn't do it. You must love your friend very much!

Alyssa

Questions

Do any of you have regular sitters for your kids- other than family? If you do- what kind of "training" process did you go through. As I mentioned earlier- Sam is anaphylaxic to eggs and very severe to milk. He has peanuts, soy, and tomatoes that he was tested for at 10mo and then about 2 wks ago we did more testing- ALL tree nuts and very severe to fish. So we have him on a special formula- Neocate (has anyone else used it- MAN it must be gold at $37 a can)! We have epi-pens here (and with us always) and he is on a breathing treatment. We believe he has asthma, BUT since the cold and flu season is about done, he has been healthy and out of the hospital (we were in twice in less than a month). So needless to say, I'm a bit paranoid about leaving him with someone. That said, we have used our family so much we hate to use them any more- add to that I'm about to become a surrogate for a friend of mine. Transfer is only 2wks away (so we will need them more)! Anywhooo........I need a break and need to know what you guys did/do. LOL Ok- that quick question turned into a book!Trish

[Guest guest]

Hi Tricia,

We only use my mom for a babysitter lol..I don't trust anyone else lol. I also give you a lot of credit for being a surrogate mother. Wow. I couldn't do it. You must love your friend very much!

Alyssa

Questions

Do any of you have regular sitters for your kids- other than family? If you do- what kind of "training" process did you go through. As I mentioned earlier- Sam is anaphylaxic to eggs and very severe to milk. He has peanuts, soy, and tomatoes that he was tested for at 10mo and then about 2 wks ago we did more testing- ALL tree nuts and very severe to fish. So we have him on a special formula- Neocate (has anyone else used it- MAN it must be gold at $37 a can)! We have epi-pens here (and with us always) and he is on a breathing treatment. We believe he has asthma, BUT since the cold and flu season is about done, he has been healthy and out of the hospital (we were in twice in less than a month). So needless to say, I'm a bit paranoid about leaving him with someone. That said, we have used our family so much we hate to use them any more- add to that I'm about to become a surrogate for a friend of mine. Transfer is only 2wks away (so we will need them more)! Anywhooo........I need a break and need to know what you guys did/do. LOL Ok- that quick question turned into a book!Trish

[Guest guest]

I think most flours are wheat based (it's probably the cheapest, huh?) but

there are a few other flours she could try like oat flour, rice flour, or

potato flour. One of our local chains (Vons/Pavillions/Safeway) even

carries some of them.

HTH!

Lee

Questions

Hey,

A cousin of my friend lives in Canada and has been having allergic reactions

anytime she eats anything with flour or cereal, ect. She is an adult and her

throat closes. The emergency room gave her an epi pen but she can't get in

to see an allergist for a month. My first thought would be a gluten allergy.

Any of you know what is could be? If it is a gluten allergy, is there any

flour that she could use that wouldn't make her have a reaction?

Thanks all!!!

*Alyssa*

Wife to

Mom to - Anaphylactic to peanuts, cashews, brazil nuts, macadamia

nuts, and pistachios. Allergic to all tree nuts. Sensitive to dairy and soy.

Eczema.

& - no allergies

[Guest guest]

Oat flour is *not* OK. It is still debated whether or not oats are ok

for gluten intolerant (and of course celiac) individuals. While the

evidence seems to say that oats are OK, *all* American oats are

contaminated (bummer, I know).

The best replacement flour you can buy is Bob's Red Mill gluten free

all-purpose flour. It works in every single recipe I have ever tried,

from breads to muffins to brownies to pie crust. It is simply the

best. But, keep in mind that no matter what gluten free flour you

use, you must use xanthan gum as a binder in the recipe. I actually

use regular cookbooks, use the Bob's Red Mill flour, then toss a

teaspoon or two of xanthan gum in. Works like a charm.

Heidi

> I think most flours are wheat based (it's probably the cheapest,

huh?) but

> there are a few other flours she could try like oat flour, rice

flour, or

> potato flour. One of our local chains (Vons/Pavillions/Safeway) even

> carries some of them.

>

> HTH!

> Lee

>

>

> Questions

>

> Hey,

>

> A cousin of my friend lives in Canada and has been having allergic

reactions

> anytime she eats anything with flour or cereal, ect. She is an adult

and her

> throat closes. The emergency room gave her an epi pen but she can't

get in

> to see an allergist for a month. My first thought would be a gluten

allergy.

> Any of you know what is could be? If it is a gluten allergy, is

there any

> flour that she could use that wouldn't make her have a reaction?

>

> Thanks all!!!

>

> *Alyssa*

> Wife to

> Mom to - Anaphylactic to peanuts, cashews, brazil nuts, macadamia

> nuts, and pistachios. Allergic to all tree nuts. Sensitive to dairy

and soy.

> Eczema.

> & - no allergies

[Guest guest]

Thank you!

Alyssa

RE: Questions

I think most flours are wheat based (it's probably the cheapest, huh?) butthere are a few other flours she could try like oat flour, rice flour, orpotato flour. One of our local chains (Vons/Pavillions/Safeway) evencarries some of them.HTH!Lee -----Original Message-----From: Alyssa Sent: Tuesday, August 12, 2003 7:50 AMTo: terrificKidsWFA Subject: QuestionsHey,A cousin of my friend lives in Canada and has been having allergic reactionsanytime she eats anything with flour or cereal, ect. She is an adult and herthroat closes. The emergency room gave her an epi pen but she can't get into see an allergist for a month. My first thought would be a gluten allergy.Any of you know what is could be? If it is a gluten allergy, is there anyflour that she could use that wouldn't make her have a reaction? Thanks all!!!*Alyssa*Wife to Mom to - Anaphylactic to peanuts, cashews, brazil nuts, macadamianuts, and pistachios. Allergic to all tree nuts. Sensitive to dairy and soy.Eczema. & - no allergies

[Guest guest]

Thank you!

Alyssa

RE: Questions

I think most flours are wheat based (it's probably the cheapest, huh?) butthere are a few other flours she could try like oat flour, rice flour, orpotato flour. One of our local chains (Vons/Pavillions/Safeway) evencarries some of them.HTH!Lee -----Original Message-----From: Alyssa Sent: Tuesday, August 12, 2003 7:50 AMTo: terrificKidsWFA Subject: QuestionsHey,A cousin of my friend lives in Canada and has been having allergic reactionsanytime she eats anything with flour or cereal, ect. She is an adult and herthroat closes. The emergency room gave her an epi pen but she can't get into see an allergist for a month. My first thought would be a gluten allergy.Any of you know what is could be? If it is a gluten allergy, is there anyflour that she could use that wouldn't make her have a reaction? Thanks all!!!*Alyssa*Wife to Mom to - Anaphylactic to peanuts, cashews, brazil nuts, macadamianuts, and pistachios. Allergic to all tree nuts. Sensitive to dairy and soy.Eczema. & - no allergies

[Guest guest]

Really! I had no idea that oat flour was not ok! Wow! Does this sound like a gluten allergy though? I will pass on this information! Thanks!

Alyssa

Questions> > Hey,> > A cousin of my friend lives in Canada and has been having allergicreactions> anytime she eats anything with flour or cereal, ect. She is an adultand her> throat closes. The emergency room gave her an epi pen but she can'tget in> to see an allergist for a month. My first thought would be a glutenallergy.> Any of you know what is could be? If it is a gluten allergy, isthere any> flour that she could use that wouldn't make her have a reaction? > > Thanks all!!!> > *Alyssa*> Wife to > Mom to - Anaphylactic to peanuts, cashews, brazil nuts, macadamia> nuts, and pistachios. Allergic to all tree nuts. Sensitive to dairyand soy.> Eczema.> & - no allergies

[Guest guest]

Really! I had no idea that oat flour was not ok! Wow! Does this sound like a gluten allergy though? I will pass on this information! Thanks!

Alyssa

Questions> > Hey,> > A cousin of my friend lives in Canada and has been having allergicreactions> anytime she eats anything with flour or cereal, ect. She is an adultand her> throat closes. The emergency room gave her an epi pen but she can'tget in> to see an allergist for a month. My first thought would be a glutenallergy.> Any of you know what is could be? If it is a gluten allergy, isthere any> flour that she could use that wouldn't make her have a reaction? > > Thanks all!!!> > *Alyssa*> Wife to > Mom to - Anaphylactic to peanuts, cashews, brazil nuts, macadamia> nuts, and pistachios. Allergic to all tree nuts. Sensitive to dairyand soy.> Eczema.> & - no allergies

[Guest guest]

I don't know if this is exactly what you are looking for, but I got

one at this website with what should have been my babies

birthstone... I really like it..

http://www.motherofangels.com

Ginger

> I would like to know if anyone her knows where to get pins with

> Angel or little baby feet on them? Also if anyone knows about FMLA

> and or Pregnancy leave?

[Guest guest]

Are you having it placed pre-pregnancy or while you're pregnant?

> I have an appt on Dec 19 with a high risk doc and iI have a whole

> list of question to ask them butI was woundering if any of you

know

> of anything else that would be important to ask? Something that

you

> would have liked to know before you had tha ab cercalge placed?

[Guest guest]

The main question I thought were very important were the experiences of the

doc with the abdominal cerclage. How many surgeries he has done? How many

have been pre-pre or post-preg? How many failed if any has he had? What he

thinks of the procedure?

I thought these are the main questions that would make a difference in your

decision. Good luck

Rosie(Tx)

[Guest guest]

I am not sure yet. I have had 2 failed cercalges. I am just going for a

consultation only. I just wanted to know if anyone new wich one was better or

just any question that you may have wanted to ask but did not I just know

people that have had this before know what to ask.

> Are you having it placed pre-pregnancy or while you're pregnant?

>

>

> > I have an appt on Dec 19 with a high risk doc and iI have a whole

> > list of question to ask them butI was woundering if any of you

> know

> > of anything else that would be important to ask? Something that

> you

> > would have liked to know before you had tha ab cercalge placed?

>

>

>

>

>

>

>

>

[Guest guest]

Robin,

From your description, I agree with your first doctor, you are a mess.....

but I am sure everything can be fixed. You need to see a gastroenterologist

to begin with. It is not normal to vomit constantly. You may be right, there

could be a blockage. I would imagine a GI series is in order. I hope you get

the proper attention and medical expertise that you need.

Gail

[Guest guest]

Hey everyone,

I tried to post this yesterday from my other email but, it

wouldn't accept it so I have to retype it under my yahoo email. I

have been lurking about and reading alot of posts that have me

thinking or down right amazed.

Finding the right words is never easy for me but, I must start

somewhere and a little background info about me will help.

To begin, I am currently 41 yrs old will be 42 in September. In

1996, I began having alot of pain and problems so finally went to see

a doctor. She took one look at me and said you are a mess. Damn, I

wish I still had her. She was open and honest. She ordered many

blood tests and we discovered I had an underactive thyroid which

caused my weight gain. I was 300 pounds then I am now down to 273.

After 3 mos. I had a replacement doctor because my first one

relocated.

In the early days weight loss was there answer to the pain I was

in. Chronic and unknown cause. Pain has been my constant companion

24/7. Wt loss hasn't helped my pain actually intensified.

In 1997, found out I was a diabetic type two due to weight I was

told. Sent to a nutritionist and put on a special diet. A few years

after that I was taught about carbs and label reading.

All of my health problems continued to get worse. I now take

2000mg glucophage, 20 mg glucorol xl, and 28 units of lantus insulin.

What I have learned is moderation is a key to my diet. I listen

to my body and I only eat when I am hungry. I try to have low carbs

and fresh fruits and vegies for fiber in my diet. Some days I don't

eat at all, other days I have several mini meals and some days I just

eat one meal.

Is this wrong? Should I force myself to eat? Because, for the

past year, every 2-3 mos. I have been vomiting like clock work and

feel like there is a wall that I can't pass through fecal material.

So naturally, everything comes up and out.

I have a doctors appointment and will bring this issue up again

to him on the 22nd. But, I thought I would ask for opinions on my

dibetes management. Criticism is okay just be gentle.

I have multiple autoimmune disorders, sveral types of arthritis,

fibromyalgia, IBS, carpal tunnel, hernia and my weight issue.

Thanks,

Robin