new to this

[Guest guest]

Patty and any other new members, I highly recommend that you call the

Immune Deficiency Foundation and ask them to send you the " Patient and

Family Handbook " if you haven't already. It's free to you and describes

many of the more common Primary Immune Deficiencies. That number is

1-800-296-4433.

I'll be glad to answer your questions if I can understand what you are

asking. Unfortunately, I'm confused (okay don't anyone ask -- what's

new?!!!!!) I thought that you said that your son had been diagnosed

with CVID. Are you asking what CVID is? Let me know, because I'll be

glad to try to explain -- just don't want to ramble on if that's not

your question.

I'll check my mail again in the morning and see if I can help you. It's

late here and past my bedtime! Successful party, tired hostess!

In His service,

dale

[Guest guest]

Good morning Patty,

my 3 year old daughter, Maggie has the same set of circumstances. All

tree things you mention are very common to CVID. Molly, my 5 year old

has CVID also, but she tends to get more of the lower respiratory

tract infections....but she also has lymphoid hyperplasia and gastro

ststuff from the sense that she has terrible constipation....while her

sister has terrible diarrhea.

We have found a very similar situation in terms of getting anyone to

commit that IVIG is the best course. I will never make sense out of

why. My 3 year old just finally started IVIG after they found that

she had not developed antibodies to any of her childhood

vaccinations. Now that our children are finally on IVIG, we are

battling to get me started on it even though my lab results are far

worse than my children's. The approach from even one physician for

all 3 of us is very inconsistant...why is IVIG right for one of us,

but not for the other who has more labaratory findings that indicate a

problem....they had no preoblem identifying all of us as having CVID

and they know that I had IMIG for 6 years on a weekly basis as a child.

We are taking a new stance....to be insistant about what we think is

best for us and then aggressively communicating this .....we make our

caregivers aware that we know what the research says....that we know

what the symptoms are and that we know what makes the problems

associated with our CVID get better....we are very close to winning

the fight. I have worked in the medical field for a better part of my

adult life....an no where have I seen the level of confusion....the

level of inconsistancy....the disinterest by physicians, freinds and

even family to learn about what our children suffer from....and, most

importantly, the reluctance to treat these kids....and adults....with

a treatment that is known to work so well for so many with very few

side effects.

Be persistant....learn as much as you can...there are so many

resources on line and in this room to learn everything you can....and

then act as an advocate for your child....no matter how many Drs. you

aggravate....you need to be a voice to be reckoned with....this is a

time to be an aggressive and assertive person.

Best of luck to you....I am right there with you and I think we all

are.

Terri Cerda

Mom to Molly,5 and Maggie 3 with CVID. Mom has CVID, diagnosed with

hypogammaglobulinemia over 40 years ago. We all have a B Cell linked

disorder.

>

> Hello,

> My 11 yr old son was dxed with CVID after 3 yrs of no known

> dx.He has generalized lymphadenopathy ,along with GI problems and

> skin.We have not started the IVIG yet.I am getting contradicting

info

> from Drs.as to what,where and when.

> I'm just wondering if anyone has CVID along with lymphoid

> hyperplasia.As to up-take on PET scan.

> Patty

>

[Guest guest]

My twins also complain of minor stomach aches. They are still able to eat

though. It they also do get sore throats with the white puss pockets. It is my

understanding though that FMF doesn't usually start until around the age of 8.

Have you been told differently?

Sent from my iPhone

[Guest guest]

Hello. My son was 5yrs., 8 months old when he had his first

symptoms. The first episode was diagnosed as strep throat although,

there was no strep test done to confirm. His cycles every 21

days. His symptoms are severe headache, fevers up to 105F, sore

throat with white patches on tonsils, canker sores, abdominal pain,

nausea or vomiting, lethargy, leg pain, loss of appetite for at least

two days. I still think there is a connection with the initial strep

throat diagnosis. April,2009 will make one year of being ill every

21 days. We saw an Infectious Disease Specialist at Nationwide

Children's hospital in Columbus,OH. He was tested for all other

periodic fevers. All were negative. His ASO Titer was borderline.

It was 200. The lab used to test set the max of upper limits of

normal at 200 or less. An ASO Titer is a blood test to determine a

recurring strep infection. This test and a couple others were done at

our local hospital. In hindsight, I wish we would have had them done

in Columbus (we live 2 hours away). I plan to ask his doctor to do

another ASO Titer because, I'm not convinced this isn't a recurring

strep infection. We do not treat him with prednisone or other drugs

however, we started giving him GummyVites chewable multi-vitamins

(from WalMart). We decided to give him vitamins because he would go

2 to 3 days without eating during a fever episode. What we discovered

was that since he's been on the vitamins, his symptoms are less

severe and don't last as long. Rather than being sick 5 days, he has

symptoms about 3 days. I really would like to know if other parents

have noticed any impact a multi-vitamin may have on their child's

symptoms.

Our son is outside all the time so, the theory of lack of sun

exposure doesn't really pertain to us.

[Guest guest]

I was just thinking this about our son, he has been diagnosed with Pfapa but

recently his symptoms have included severe headaches, tummy aches, leg pain and

joint pain. He didn't have these symptoms when we were diagnosed and I wonder if

they are a part of ? The outside of his ears also get very red and hot

with his fevers, has anyone else experienced these symptoms?

B

[Guest guest]

I was just thinking this about our son, he has been diagnosed with Pfapa but

recently his symptoms have included severe headaches, tummy aches, leg pain and

joint pain. He didn't have these symptoms when we were diagnosed and I wonder if

they are a part of ? The outside of his ears also get very red and hot

with his fevers, has anyone else experienced these symptoms?

B

[Guest guest]

My son has been on a multi-vitamin every day since he stopped

nursing at 12 months. His fever did not start until he was 3. We

are now trying high doses of vitamin C (3500mg per day)along with

the multi-vit. Since we tried the steriod last month everything is

messed up so I can't say if the Vit C has made a difference. The

steroid zapped the February fever but he had another in 11 days

instead of the usual 24-28 day. Just waiting to see if we have the

usual fever that should start in the next few days. YUCK! But many

parents have had some great results with the Vit C. Our

pediatrician said that if had leg pain or vomiting he would

look for a different diagnosis????

's Mommy

[Guest guest]

My twins have always taken a multivitamin, but I have never noticed a

difference. With that said, my twins don't really lose their appetite they much.

Even when they complain of a stomach ache, they still eat albeit even if it's

not quite as much as they normally do.

Sent from my iPhone

[Guest guest]

Hi.

The symptoms you describe are consistent with our daughters. She is

4.5 and has been diagnosed with since June 2008 - fevering

since March 2008. She has been taking multi vitamin for years. The

intensity of her fevers varies so I don't know that the vitamin has

helped us anymore than usual. However, I think you'll find that

what works for one child may or may not work for another. Each one

seems to respond differently with this illness.

Our last fever was the strongest by far and the longest (5 days

compared to typical 3). We've just started her on vitamin C in

addition to the multi because I've read about some positive results

in other children. We have apointments with several ENT docs in

March as we are ready to consider T & A at this point. I'll post

again when I determine if vitamin C helps us.

Best of luck to you. Hopefully you'll find this group to be very

helpful - I sure have.

Mom to Sophia 4.5 fevering since March 2008

[Guest guest]

Dear new to this:

My eleven year old daughter had these exact same symptoms with her

. leg pains, headaches, severe abdominal pains, etc. her mouth

sores didn't show up until later. fyi: she grew out of her last

year - so there is hope!!!! we never could find anything to help

w/the stomach pain, sorry. good luck and you are definitely in the

right group!

[Guest guest]

My son is thought to have fmf and has been sick sense birth.

**************

Worried about job security? Check out the 5 safest jobs in a recession.

(http://jobs.aol.com/gallery/growing-job-industries?ncid=emlcntuscare00000002)

[Guest guest]

Leg pain, stomach and headache pain, the three things every episode

brings on. I would worry sick thinking she had something horribly wrong

with her stomach. We eventually just got used to this complaint and

tried to get her to eat some saltines, I think sometimes it was just

taking meds on an empty stomach that caused half the pain. Steve

[Guest guest]

at present,  I haven't been told much.  Most of the info I have is from the

internet.  We have been to a rheumatoligist twice (a Dr who supposedly

specializes in FeverSyndromes) The first time, he had been fevering for 7

months--then didn't have one in 6 weeks, right before we saw her--so, she/we

just figured he was " done " --then, of course--a week after we saw her, he started

up again--so we went back 4 months later--so, they decided they would start

testing him. 

My son had initially had minor stomach aches--but the last 2 bouts--have been

terribly severe --He doesn't get mouth sores/or throat problems.    Thank you

for your reply-  it's nice to be able to hear from others going through this, as

well. 

[Guest guest]

how old is your son?  What are is his symptoms?  Does he take Colchicine?  Mine

hasn't been diagnosed with it yet--  thank you so much for your reply

[Guest guest]

My daughter also had stomach pain during her episodes though not right away. She

has been fevering since summer 2008 with very high fever, headache and badly

swollen neck lymph nodes. The stomach pains came in November cycle. We even

ended up in ER because she was crying " my tummy hurts " in the middle of the

night. Of course, they didn't find anything wrong. She also had pain though not

as severe during Decempber-January cycles. Then we had T & A done and so far no

pain.

I believe that her tummy pains were coming from the swollen lymph nodes down

there. The swollen nodes in her neck would usually get so painful that she

couldn't move her head for 3-4 days

[Guest guest]

my son is 15 and he has not had the testing. but he was on colchicine for a

year and three months, he felt so much better on it until the last three months

when his heart beat starting slowing down to below 50 . and he developed pain

in his back and legs. they took him off for a while to see if the heart

beat is related i don't think it was. how he is back to talking and walking in

his sleep. i sure didn't miss that. and he says that he can't think strait

anymore. but anyway he has bad stomach pains leg and joint problems mussel

pain, mouth sores, very rare a sore throat swollen glands and his temps will run

between 93 and 105 degrees so i never now what is a temp on him. try the

colchicine it does make them feel better. but remember it works on a cellular

level. so your little one may be more tired. just let extra naps in your day.

have

a good day char.

**************

Worried about job security? Check out the 5

safest jobs in a recession.

(http://jobs.aol.com/gallery/growing-job-industries?ncid=emlcntuscare00000002)

[Guest guest]

Hi " sheenhicks "  --  you said your son was on colchicine--did he test positive

for the FMF?  since he was having the problems with the colchicine,  Is he off

it now? or is he on something else?  Did you notice if he didn't take it one

day, did some of his symptoms re-occur?  

When did he start having fevers? 

Thank you--  have a  great day!

[Guest guest]

If u don't find one closer, let me know. I have extras and can send you one.

dl in oklahoma

Sent via BlackBerry by AT & T

New to this

Hi All!

I have been buying Kombucha tea and it is very expensive. I do believe in all

the benefits of this tea and would like to make my own. I have been reading tons

of info on this and want to start trying this on my own. I am in Utah and have

not found any resources for a starter. Can I make one from the tea I purchase?

If I send for one how can I be sure of the safety---anyone have a good resource

they can recommend?

Thanks!

BB

[Guest guest]

You can definitely grow your own baby from a bottle of unpasteurized

Kombucha, such as GT's (available @ health food stores). If 's

group search tool worked better, I'd tell you to search this group!

But I know there's at least one YouTube video of how to grow one...

Or you can do a Google search for directions:

http://tinyurl.com/nt8xsa

I got my SCOBY (AKA " mama " / " mother " ) for free via the following list:

The Kombucha Exchange

http://www.kombu.de/suche2.htm

Just search for your state, then the closest town...

BTW, some folks have had luck locating a SCOBY via Craigslist.

If none of these options work, let us know, so we can recommend

a seller.

Good luck!

Vicki in Orlando

>

> Hi All!

>

> I have been buying Kombucha tea and it is very expensive. I do

> believe in all the benefits of this tea and would like to make

> my own. I have been reading tons of info on this and want to

> start trying this on my own. I am in Utah and have not found any

> resources for a starter. Can I make one from the tea I purchase?

> If I send for one how can I be sure of the safety---anyone have

> a good resource they can recommend?

>

> Thanks!

> BB

[Guest guest]

--

how do you pack a SCOBY for sending? I have a friend in Denver who wants

one, and I have been perplexed about how to get it to her.

thanks,

If u don't find one closer, let me know. I have extras and can send you one.

>

> dl in oklahoma

>

[Guest guest]

--

how do you pack a SCOBY for sending? I have a friend in Denver who wants

one, and I have been perplexed about how to get it to her.

thanks,

If u don't find one closer, let me know. I have extras and can send you one.

>

> dl in oklahoma

>

[Guest guest]

my first scoby was from a commericial site, and was in a heat-sealed

plastic bag, which would be an ideal way to send them as the seal is secure.

years ago i had one of those sealing units, but the plastic bags were so

expensive i quit using it.

the ones i have been sent from " real " people were in regular ziplock bags (not

the ones with the hard plastic zipper thingy-they do not seal well), which were

sealed with clear package tape, then put in a second ziplock which was also

taped. this method does work, but there is usually leakage from the first bag

and the second bag contains it. interestingly, the starter that leaks out into

the second bag is often forming the pre-scoby material by the time it gets

there, so its kind of slimey which newbies might find a little icky.

i have sent them as above and been told they arrived in intact, but the last few

i have sent, i put in a plastic recycled Jiff peanut butter jar (any plastic jar

with a tight lid will do). I tighten the lid very well, then tape the lid with

clear package tape. put that in a ziplock and tape it. I like this method

because it allows me to send a bigger portion of starter without the worry of

the ziplock breaking. either way, be sure to put some padding in the box around

it.

  LaGrand

918-931-9600

Fax: 866-669-0231

________________________________

From: Rapp <ARapp@...>

kombucha tea

Sent: Wednesday, June 10, 2009 12:40:12 PM

Subject: Re: New to this

--

how do you pack a SCOBY for sending? I have a friend in Denver who wants

one, and I have been perplexed about how to get it to her.

thanks,

If u don't find one closer, let me know. I have extras and can send you one.

>

> dl in oklahoma

>

[Guest guest]

Haven't used my Vitamix yet. If I am going to experiment with drinks for just

one person can I half the recipes or does the container need to be full to work

best? Am really interested in trying to get some more greens in my diet and hope

this will work but I live in a small community where veggies are limited but do

hope to try a garden in our new home?

Thank you

Debbie

[Guest guest]

The wet containers can process as little as 4 oz (YEAH!), so halving your recipes shouldn't be a problem. Halve with impunity and gusto!

new to this

Haven't used my Vitamix yet. If I am going to experiment with drinks for just one person can I half the recipes or does the container need to be full to work best? Am really interested in trying to get some more greens in my diet and hope this will work but I live in a small community where veggies are limited but do hope to try a garden in our new home?

[Guest guest]

The wet containers can process as little as 4 oz (YEAH!), so halving your recipes shouldn't be a problem. Halve with impunity and gusto!

new to this

Haven't used my Vitamix yet. If I am going to experiment with drinks for just one person can I half the recipes or does the container need to be full to work best? Am really interested in trying to get some more greens in my diet and hope this will work but I live in a small community where veggies are limited but do hope to try a garden in our new home?