Re: Sandi

[Guest guest]

Really? I never considered coming down with a 2nd sinus infection. Her

drainage is less so she's not coughing as much, but she's still exhibiting

that wonderful sinus behavior. Took her to my OB appt today which she usually

tolerates well because she gets CANDY the whole time, but she SCREAMED and

tantrummed in the car the entire ride there, which was about 45 minutes.

My sister/her 2 toddlers and our parents were here today and she informed me

that her son had a runny nose yesterday. She said something about how she was

thinking, " Oh great, right when we're going to see " but the thing is,

she didn't tell ME about it until the kids were already playing together.

Some people seem to have cement in their skulls. Yes, it's just a cold to

your kid but my kid has been getting a secondary bacterial infection with

about 75% of her colds. Thanks alot. She seems to think she's beyond the

contagion rule because her kids never get sick. But of the three colds her

kids have ever had in their whole lives, they've given one to and I'll

let you know in two days if she gets another, you know?

And my husband's family is sweet but can be too paranoid, I mention the

low-grade temp to my MIL and she's immediately convinced it's West Nile

Virus. Sigh.

I'm guessing it's a new little cold-type virus, but now that you've given me

the heads-up I'll keep an eye on the sinuses too. There's always the

follow-up appointment (when abx are done) as a safety net.

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

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

[Guest guest]

:

My inlaws, everytime we've gone there someone is sick, and I keep the kids

outside or leave. They always say, oh, it's just allergies, and they sound

and look horrible. No one in either of our families can get the clue. My

Dad had his crew in here this past week, they stained the laundry room, I was

teaching Sis, by the time the smell reached that room, I went screaming thru

the house yelling no. When I got in there, he was done. I gave the

complaints, he said he forgot. The next day he came to polyurethane that

room, but he brought thick plastic to put up in the door way, then a fan to

push the smell away from the other side of the house. My Dad still is

convinced she's not sick.

Okay, I''ll get off that box. Have a great day! Thanks for letting me mow

you over.

Lynne

[Guest guest]

Sandi:

Well, yesterday Em had a couple of loose stools and today a couple of crying

spells for no reason. She has every single indicator (for her) of a sinus

infection, except no drainage or green nose. In fact, a while after crying

she wanted to blow and hardly anything came out. ?????? Actually, we're

missing one symptom for her -- night waking, but I'm expecting that tonight

or tomorrow!

REMINDER -- is everyone remembering to plan their flu shots??!!!! Especially

you IgA defs! The hardest part is getting my husband to get his -- he knows

it's important but he has a procrastination problem. Actually, usually even

harder is trying to get the PID child healthy enough to even GET the vaccine!

[Guest guest]

,

never, ever has green discharge, or any discharge with sinus

infection. It's because his sinuses swell shut. I wonder if is

switching symptoms on you?? Just to keep you on your toes As if a new

baby and wouldn't already do that!!

Sandi, 's Mom

[Guest guest]

Sandi:

Wow, I never heard or thought of that. So how do they " believe " you? Sinus

CT? Do you just go by the other symptoms and then they culture or CT? Please

enlighten me, because they only go by the meanie greenies with us so far. And

thanks for the heads-up... I hope it isn't that but I want to be sure.

(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]

To add to that, I have had chronic sinus infections myself over the years, and I

have never had discharge or any " cold " systems to speak of. I just get a

terrible headache, and my eyes, cheeks, mouth and teeth hurt terribly. So, she

may have an infection without her normal symptoms.

Re: Sandi

,

never, ever has green discharge, or any discharge with sinus

infection. It's because his sinuses swell shut. I wonder if is

switching symptoms on you?? Just to keep you on your toes As if a new

baby and wouldn't already do that!!

Sandi, 's Mom

[Guest guest]

Kelli,

Kody never gets snotty with a sinus infection either. He used to, but

then in the last year and a half it has changed. What happens with Kody,

he gets drainage down the back of his throat instead. Sometimes he

coughs with it, like when he lays down. But most of the time he just has

nasty and I mean nasty breath. Around the time of his sinus surgeries,

he had even quit draining down his throat. X-rays and CT's can show it

clearly. But with Kody, the skin around his eyes looks slightly puffy

(sometimes very obviously so) and the skin changes color to a kind of

reddish purple, even on his eyelids. He also complains of headaches, and

is as Sandi puts it, exhibiting sinus infection behavior! He is cranky,

gets angry easy, and cries on a dime. His doctors know him so well now

that one look at his face and they can see his sinus infection look he

gets. I would suggest getting an xray first. That should show if the

sinus cavities are full or impacted, and that way you would know for

sure.

Diane, Mom to Kody

[Guest guest]

Sandi:

Thanks for the info. Took both girls in yesterday, Kate for her 1 month

physical and for her possible sinus infection. The ped totally believed

me about the sinus signs, and left it up to me whether to treat based on the

fact that looking up her nose and at her throat saw no evidence of anything

at all. No redness, drainage or anything, no sign of infection at all. She

gave me the scrip (trying Omnicef one more time, it's been nine days since

she's been off of it) and I'm holding on to it until I have more of an

indication this really is a sinus infection. Usually there's SOMETHING they

can see, you know?

I did mention the steroid burst but she seemed unwilling to think about that

right now, wait and see how this one goes.

Kate apparently has another cold and this doc expressed some minor (very

casual, nothing huge) concern over the two colds in her first month of life.

She said that second kids DO get sick more often because of exposure issues,

but basically she said if this continues we'll test her immune system when

she gets older.

I know that's practical and makes sense and is no big deal because after all,

it's just two little colds and to be expected. But hearing someone mention

PID testing to me regarding Kate just didn't thrill me. But even if Kate was

PERFECT, catches everything, so of course Kate will be sick a lot.

Guess we'll just wait and see what happens. She also appears to have GERD,

she's choking on reflux a couple times an hour at this point. We're waiting

to see how that goes before we jump on the Zantac. was the same way,

but she was older (two or three months?) when it started.

Oh, this ped didn't recommend we take that roadtrip downstate this weekend.

Turns out, the decision didn't have to be made by us anyway -- when I called

to bow out, I found out the two little kids there both have colds, so we

couldn't have gone anyway!!!!!

It will be a miracle if both girls don't get something new in the next couple

of days -- everywhere we have gone the last three days (mall play area,

friends visiting with their coughing 8 month old, 's ballet class) there

has been some sickie or another there. That drives me nuts. I don't take

anywhere that would expose other kids to her illness for a full 7 days

after anything. Some people are so inconsiderate.

(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]

My greatest frustration is that it seems to be helping. He is less agressive

and we do not have several daily major tantrums. I know he feels better about

himself . He still has alot of anxiety especially about school so going back

on Monday is going to be a big deal. He is in a small Episcopal school that

is very wonderful. There are only 10 kids in his class. He is at the top of

his class. He would prefer to stay home all the time and has begged us to

home school him for two years. I really believe since he is on IVIg he really

needs the socialization especially because of his mood disorder. The other

kids love him but he thinks that no one likes him. My husband and I have both

been to the school alot so we are able to see what is going on. This too

will pass. BARBIE

[Guest guest]

Sandi,

I know my mother felt very frustrated when I was going through this as a child. She worried more and stressed out more than I ever did at that time. As a mother myself now, I understand that helpless feeling. And the waiting is always the worst no matter what it is. I had no symptoms on my left ear until I woke up one day and couldn't hear a thing out of that ear. And that was as an adult. Good luck to you and Tony.

Sandi Franco <sales@...> wrote:

Ilona,

I guess I just kinda wish that Tony had some kind of symptoms like most of the others in the group. It is just frustrating that he never had infections or anything and then all of a sudden we get hit with the c-toma from no where. It is a very scary thing when it's a child. I guess my problem is that I can't fix this for him. Hopefully the 20th will get here soon so we can get it behind us and focus on the future. Thank you for your words of kindness, it really helps.

Sandi

(mom of Tony age 7)

Re: Tammy - RE: SURGERY IS THE ONLY KNOWN CURE

You have had 16 - 17 surgeries? That is so much. Is that just for the c-toma or for tubes and c-toma. I have had tubes placed in my ears so many times I dont remember the number of surgeries for that. I had my right ear drum totaly reconstructed when I was 12. They have only diagnosed my left ear and not my right. But everyone I have spoken with thus far has had c-toma in both ears. Is there anyone out there that has had it in only 1 ear???? Thanks for the info Tammy. And I to will keep hoping for another way to rid us all of c-toma besides surgery. Good luck to you! jsatssat <jsatssat@...> wrote: I WAS DIAGNOSED WITH A C-TOMA IN MY RIGHT EAR WHEN I WAS 16 I AM NOW 28. I HAVE STARTED HAVING THE SURGERY IN 1994 AND AFTER 2 SURGERYS ON MY RIGHT EAR. THEN THEY TOLD ME THAT I HAD ONE IN MY LEFT EAR. I HAVE HAD A TOTAL OF 16 MAYBE 17. I SEEM TO HAVE LOST COUNT SOMEWHERE. I HAVE AN APPONTMENT MARCH 27 AND WILL GET READY FOR THE NEXT ONE IN MY RIGHT EAR. I DONT HAVE THAT MUCH OF A PROBLEM WITH THEM NOW THAT I DONT REALLY HAVE ANYTHING TO LOSS. I STILL HOPE THAT SOMEDAY THAT THEY WILL COME UP WITH A NEW IDEA TO TREAT THESE THINGS. MY FIRST DOC WAS REALLY INTO LOOKING FOR A NEW IDEA I HAD THE FIRST SURGERY IN OCT 1994 AND BY DEC 1994 IT WAS BACK SO HE GAVE ME PREDNZONE TO SHRINK IT THAT SEEMED TO HAVE WORKED BUT THE OTHER DOC I HAVE SEEN SAY THAT THAT DID NOT WORK. OR SO THEY SAY BUT THAT IS THE ONLY THING THAT I HAVE EVER TRIED BESIDE THE SURGERY.TAMMY

[Guest guest]

> My insurance paid so little, it didnt even cover the TIME and the

operating room expenses. Dr. Z simply took what the insurance

paid. NEVER billed me a thing. The program fee I paid didnt even

cover what the insurance didnt pay for his services.

>

> (It is the HOSPITAL that bills you for the over-the-insurance

charges. DRMC doesnt even accept my insurance anymore due to the

tiny bit paid.)

>

>

> Anne

Hi Anne

I personally think that they have the program fee for many reasons,

some that have been listed and more. But I think one of the reasons

is...The good dr.s take almost any kind of insurance to allow

availability to all for this wonderful, life saving surgery. And

you are right, most all of the insurances dont pay enough to even

cover the Drs time much less anything else. And they accept what

the insurance pays, and dont want anymore. I know, because when my

insurance paid they didnt cover the expenses of my surgery. I sent

in a check for the difference (thought I needed to), and the office

refunded my check to me saying they accepted what the insurance paid

as full payment. Never had that happen before...

Some wouldnt use the follow up if they hadnt paid for it already,

and we (post-ops) know how vital good follow up is, with labs and

compliancy. And anyone who has had ANY problems and had to call in

the middle of the nite, and Dr. K answers your questions, evaluates

what is going on and makes a decision, knows that this fee is well

worth it, and who can put a price on the peace of mind just talking

to Dr K gives you...

I have had no complications....I had an uneventful recovery and

follow-up. But if I email Dr K - he answers within 24 hrs usually,

and apologises if it takes longer (imagine that). All my silly

little questions. And when I had a major pain- my first- 3 mos out-

and didnt know what it was, my mind racing- I called and Dee, and

she calmed me down..said it was gas (whoo knew gas could hurt so bad-

I mean ER bad). I took gasx and an hour or so it subsided. It is

just things like that, that make it worthwhile. I also think that

the fee frees people (like me), who wouldnt normally call, the

courage to call because I know the time is mine, I paid for it.

YMMV- these are just my thoughts on it.

Sharon in Onyx

who also had a hard time coming up with the fee- but did it and

doesnt regret a cent of it...and it is tax deductible.

[Guest guest]

Yes, It is an older antihistamine..It makes you sleepy, my 20 month old

started taking it aug 11th--his is a little woozy before bed--

he takes it at bedtime, so that he can take his Zyrtec in the AM--

Sandi

Sandi,

Ben takes Cyproheptadine ( a generic of Periactin). He takes the liquid.

It has really helped with his appetite. He gained 17 pounds this past year

(age 15) taking the med and nothing the year before (age 14). He has grown

1.25 inches this summer (Yeah!) and looks quite thin. He had to work up to

the prescribed dose as the full dose made him very sleepy and irritable, but

working up to

the dose he has done just fine. I do not know if it is a med that can be

used with heart problems. I believe it is an older antihistamine. I'm sure

's doctor will be very careful in what is prescribed. I have been

amazed at

's progress.

Jan

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

[Guest guest]

Pat-

Just so ya know....I had some help from a " DS Elf " ....(hey...does

that rhyme?) Anyway....

Happy Holiday

~Sandi

> There is nothing I can say to you except Thank you so very much.

> I am speechless for once...lol

> Thank you from the bottom of my heart and I can't think of any

> better friends that I have than my ds friends.

> May God bless you always

> Pat

[Guest guest]

Feel free to e-mail me privately anytime at holt-smith@... :-)

Sandi

sandi

Hi Sandi,

If you check in here soon would you please email me.. thanks

Deb NJ

[Guest guest]

Hi Deb,

Thank you for the invite to come and stay with you. You are so

sweet....I might just take you up on it!!!!

You know I've always wanted to go shopping and spend Christmas and New

Years in New York City! Maybe I should make an appointment with Dr.

Richter in Philadelphia for the first part of the year??? I think I have

the most confidence in him as far as doing a post-myotomy dilatation.

How many post-myotomy dilatations has your GI doc done?

Sandi

sandi

Hi Sandi,

Glad to hear you made a decision. It is always very stressful to be

undecided about anything.

I'm sure you will be able to find a dr. that you have complete

confidence in doing the procedure. At least if you start out

thinking your Dr. can walk on water you are 90% of the way home!

You can always come here and use my Dr. if you'd like.He's in NYC at

Columbia Presbyterian Hospital. I'd recommend him in a heart beat!

He's done all my endoscopies. Even the one I had to have after my

surgery when they were afraid of disturbing my surgery. He assured

me he knew exactly how far he could go! It went just fine.

I have room for you and you could visit all at the same time! See the

sights in NYC too.

Deb NJ

[Guest guest]

I will find out

more tomorrow with my appointment with my surgeon to discuss details and schedule

the Heller. But so far I know we get a urine catheter and a nose one/feeding

tube. That is all I know.

RE: GUESS

WHAT!?!?!?!?!?!

That’s

next week !!!!!! How exciting!

I’m

very happy for you. …I can’t believe that the Dr. is so consumed

with himself, but happy you have been put at the top of his list!!! He better

take good care of you!

Sandi in No CA

[Guest guest]

I had a catheter put in when I had my son via c-section. It's

totally not a big deal at all! Worry about whatever else you have

to worry about (which isn't much now!!), not the catheter.

Kim in KS

> Hi Sandi!

>

>

>

> You are right! He better take good care of me. This is one of my

fears

> - he is going to squeeze me in.so what does that mean? He had 30

> minutes and that is it or ?? ahghgh! That is a fear, and a

catheter.

> Can someone else who has had the lap heller tell me if they had a

> catheter put in? For some reason I am assuming they do but who

knows.

> Yuck.. Gross... blah!

>

>

>

> It is less than a week now, and only 2 days of work too..wow.

(what a

> holiday though. This is the first time off I have had since my

> honeymoon 2 years ago!) I can't wait.

>

>

>

>

>

>

>

> RE: GUESS WHAT!?!?!?!?!?!

>

>

>

>

>

> That's next week !!!!!! How exciting!

>

>

>

> I'm very happy for you. .I can't believe that the Dr. is so

consumed

> with himself, but happy you have been put at the top of his

list!!! He

> better take good care of you!

>

> Sandi in No CA

[Guest guest]

In a message dated 1/30/2005 11:47:52 AM Pacific Standard Time,

kaclight@... writes:

Just remember that you

DO NOT have to submit your son to medical practices that have been

proven to cause reactions in some patients. I will pray for both of

you. I remember how awful those reactions were!

Thanks, Kim. There are only two Pediatric Immunologists in our town who

accept my son's insurance. One doesn't believe in subclass deficiencies or

Polysaccharide Deficiency if the child makes ANY titers--no matter how scant the

numbers are. So, I chose this guy who seemed to have a very good heart. I will

try again tomorrow. Plan B might be to have his Ped order the IVIG and have

it administered at the local children's hospital.

Sandi, Mom to , age 11. Polysaccharide deficiency, IgG1 subclass

deficiency, Tetrology of Fallot, Pulmonary valve transplant (2003), Mitral valve

stenosis, chronic ear, nose and throat infections--including strep, COPD,

asthma,

severe allergies (including meds), Carnitine deficiency, GERD, suspected

Velocardiofacial syndrome.

[Guest guest]

Hi - I am definitely interested in a meet-up in Vancouver. I have checked the

site several times but have never been able to figure out if there has been one or for

that matter where it would be. I would appreciate it if you find out about one let me

know. Glad to hear you are still doing well.......me too.

All the best, , Vancouver BC

-- Sandi

Hi Sandi,

I hope you get great turn out for your meetup. I keep thinking about doing in Vancouver soon… in the actual meetup site, there are actually a few members… but I don’t ever get a response back… Maybe that is the technology-challenged part of me doing something wrong? Ha – probably!

Good to learn that the procardia works good for you… I hope it continues. Don’t wait long for the dilation if you think you need it. You know what the outcome can be!!! Don’t do things the hard way!

Good luck with your business, and the meetup. Let us know how it goes! That would be a blast!

in BC

-----Original Message-----From: Holt- [mailto:holt-smith@...] Sent: Wednesday, February 02, 2005 4:06 PMachalasia Subject: RE: Bay Area Get-Together

Hello Everyone,

For the past couple of years I have been organizing a luncheon with my fellow Achalasians from the bay /Northern CA/ West Coast/ or anyone happening to be in the area Area! I usually plan the event for President’s Day Weekend which is very quickly approaching us.

I’m planning to have this years luncheon in Sausalito, CA. I am not yet sure of the venue, but wanted to give you all the heads up to anyone and everyone who wishes to attend, I think I’ll be having it on Sunday, February 20th this year.

If you would like to join us, please email me at holt-smith@... to better assist me in the planning and making of reservations!

I’m sorry I have not been posting in awhile, I’ve been very busy getting my business going which has been taking up a lot of my time, but I do keep up with the posts on a daily basis and have been doing fairly well with the achalasia. I do think I probably need a dilatation, but I am going to hold off on it for the present until. I take procardia for my blood pressure, and I didn’t realize just how much it helps with my swallowing until I recently ran out of it. I was ooff of it for a couple of weeks, and I started regurgitating until I got back on my meds! I definitely do much better with the procardia…and it really does help with the spasms too.

Warm wishes to all our new members of the group and as always, I look forward to meeting my fellow Achalasians!

Sandi in No CA

[Guest guest]

Thank you ,

I have never checked out the meet-up site...it's just as easy I think to post a

message to the group. We usually have a few people who attend...hope we have a

better turnout this year!

I also try to send out personal messages to everyone local in the area as not

everyone reads the posts anymore.

Well...good luck to you if you should try to get a meetup organized. Are there

many group members in your part of Canada??? Or maybe Washington??? (Aren't you

close to Washington?)

Well, anyways, best of luck and thank you for your nice thoughts!

Sandi in No CA

Hi - I am definitely interested in a meet-up in Vancouver. I have checked the

site several times but have never been able to figure out if there has been one or for

that matter where it would be. I would appreciate it if you find out about one let me

know. Glad to hear you are still doing well.......me too.

All the best, , Vancouver BC

-- Sandi

Hi Sandi,

I hope you get great turn out for your meetup. I keep thinking about doing in Vancouver soon… in the actual meetup site, there are actually a few members… but I don’t ever get a response back… Maybe that is the technology-challenged part of me doing something wrong? Ha – probably!

Good to learn that the procardia works good for you… I hope it continues. Don’t wait long for the dilation if you think you need it. You know what the outcome can be!!! Don’t do things the hard way!

Good luck with your business, and the meetup. Let us know how it goes! That would be a blast!

in BC

-----Original Message-----From: Holt- [mailto:holt-smith@...] Sent: Wednesday, February 02, 2005 4:06 PMachalasia Subject: RE: Bay Area Get-Together

Hello Everyone,

For the past couple of years I have been organizing a luncheon with my fellow Achalasians from the bay /Northern CA/ West Coast/ or anyone happening to be in the area Area! I usually plan the event for President’s Day Weekend which is very quickly approaching us.

I’m planning to have this years luncheon in Sausalito, CA. I am not yet sure of the venue, but wanted to give you all the heads up to anyone and everyone who wishes to attend, I think I’ll be having it on Sunday, February 20th this year.

If you would like to join us, please email me at holt-smith@... to better assist me in the planning and making of reservations!

I’m sorry I have not been posting in awhile, I’ve been very busy getting my business going which has been taking up a lot of my time, but I do keep up with the posts on a daily basis and have been doing fairly well with the achalasia. I do think I probably need a dilatation, but I am going to hold off on it for the present until. I take procardia for my blood pressure, and I didn’t realize just how much it helps with my swallowing until I recently ran out of it. I was ooff of it for a couple of weeks, and I started regurgitating until I got back on my meds! I definitely do much better with the procardia…and it really does help with the spasms too.

Warm wishes to all our new members of the group and as always, I look forward to meeting my fellow Achalasians!

Sandi in No CA

[Guest guest]

We arrived at the ped's oncologist at 2:30. The nurse applied emla and we

met a sales rep who gave us several tubes of it. (This will help with labs and

shots) Hunter is starting to get burned out on needles already. We waited

until 5:05 to get the doctors orders to give the injection - Hunter screamed to

the top of her lungs - and she finally got the shot. After it was over she

told me she was more scared of it and it didn't really hurt that bad. At least

next week she won't have to wait so long and she will eventually become more

familiar. I do plan on learning how to do it so we can do it at home. The

oncology doctor told me if I can't get more MTX from our pharmacy here in town

(we bought 4 vials two hours from our home) that the hospital would supply it.

I was glad to hear that I didn't want to start her on the injections and then

have to start back on those yellow pills. While we were at the hospital -

Hunter got to meet and have her picture take with Hamilton, the skater.

She thought that was pretty cool. Anyway - we are sooooooo hopeful that

changing to the MTX injection will help and Hunter won't have to go on the

Enbrel.

Gotta go Hunter has to get a PPD test today. Thanks to all who have answered

my questions and continue to be supportive. Sandi Ken Hunter (6 Systemic)

[Guest guest]

In a message dated 2/10/2005 10:54:52 PM Central Standard Time,

yhwhworship@... writes:

> I'm also hoping to get an under-the-sink water purification system so that

> we can know for sure that Sam is only getting good water. If we do, we'll

> probably even use it to send to school.

>

>

Wenoka:

We had a reverse osmosis under-the-sink amazing Culligan water filtration

system. It came with the house when we bought it two years ago(former owner's

dad

worked for Culligan). We saw it as a plus when we bought the house, but soon

found ourselves hating the thing when it came time to replace all the filters,

which would have been over $300!!!!! Just for filters!!!! Then some plumber

wanted to charge an arm and a couple legs just to pull the thing out. So I had

somebody talk me through it on the phone and I capped it off myself and pulled

the thing out myself and put it to the curb. I was so mad, I didn't even

bother with considering selling it or anything.

I was mad because with all the by-passes and such to run the thing from the

regular plumbing, the thing had leaked water under my sink and damaged the

cabinet and who knows what else (any time anything clogged up the by-pass hole,

water would back up and flow out the air outlet valve. I cannot STAND any leaks

or water damage now since we had that mold nightmare a few years ago).

Several years ago, when I was pregnant with I was obsessed with health

so I researched water filtration and settled on the PUR water filtration

pitcher. It is the only one I found that took out not only bad tastes and such

but

also microorganisms like cryptosporidium and all that horrible stuff. We ended

up chucking our expensive reverse osmosis thingy and using our PUR pitcher

anyway. I love it. only drinks from that pitcher, not because I'm afraid

of our water but because she thinks it's fun to pour it herself! Keep in mind

that other filtering pitchers only improve taste, they don't necessarily filter

out infectious type stuff.

Hope that helps... I'd hate for anybody to pay for the system we had and then

flip out when it came time to change the filters!!! I about choked!!

(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, more dairy intolerant but very healthy!)

[Guest guest]

In a message dated 2/11/2005 10:08:30 AM Eastern Standard Time,

bunneegirl@... writes:

Hope that helps... I'd hate for anybody to pay for the system we had and

then

flip out when it came time to change the filters!!! I about choked!!

We have a water cooler from Clearwater. It is easy and the water is soooo

good. I hate sink water! There are other companies that have these coolers and

water.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

In a message dated 2/10/2005 8:55:00 PM Pacific Standard Time,

yhwhworship@... writes:

I'm also hoping to get an under-the-sink water purification system so that we

can know for sure that Sam is only getting good water.

Wenoka,

I agree!! About a month after I moved in here, I found a door hanger on my

front door telling us that there was lead in our water!! So, since then

we've used bottled water--the type that is on a cooler. I purchased my own

cooler

so it really keeps the cost down. I think it makes such a difference for our

kids...they are sensitive to so much.

I hope you get a different heating source!! If you could, what would you

get??

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

transplant (2003), Mitral valve stenosis, COPD, asthma, Carnitine deficiency,

GERD,

suspected Velocardiofacial syndrome.

[Guest guest]

In a message dated 2/11/2005 4:59:19 PM Eastern Standard Time,

sassykay59@... writes:

I purchased my own cooler

so it really keeps the cost down.

That's what our is, it hold 5 gallon jugs.

Janet, Mom to Brittany, CVID, age 14