Traci

[Guest guest]

Hi Traci,

I have never heard of Dr. Green but if he/she works with the other two, then

I am assuming that they are equally as good. CHOP has a very strong

immunology department so either way you are in good hands. Please keep us

posted and good luck to you, as well.

Autumn (Mom to Mark Cd5-Cd19 PID and )

Re: to rebbecca (buttrfly@...)

> Hi Autum,

> Thank you. The Dr. we are seeing is Dr. Green. I hope he is as great as

the

> other two you mentioned. It is great to hear from others. Good luck to you

> and your family

> Traci

>

>

>

[Guest guest]

Hi Traci,

I have never heard of Dr. Green but if he/she works with the other two, then

I am assuming that they are equally as good. CHOP has a very strong

immunology department so either way you are in good hands. Please keep us

posted and good luck to you, as well.

Autumn (Mom to Mark Cd5-Cd19 PID and )

Re: to rebbecca (buttrfly@...)

> Hi Autum,

> Thank you. The Dr. we are seeing is Dr. Green. I hope he is as great as

the

> other two you mentioned. It is great to hear from others. Good luck to you

> and your family

> Traci

>

>

>

[Guest guest]

Hi Traci,

I have never heard of Dr. Green but if he/she works with the other two, then

I am assuming that they are equally as good. CHOP has a very strong

immunology department so either way you are in good hands. Please keep us

posted and good luck to you, as well.

Autumn (Mom to Mark Cd5-Cd19 PID and )

Re: to rebbecca (buttrfly@...)

> Hi Autum,

> Thank you. The Dr. we are seeing is Dr. Green. I hope he is as great as

the

> other two you mentioned. It is great to hear from others. Good luck to you

> and your family

> Traci

>

>

>

[Guest guest]

Traci, thanks for your words of support.

's not usually this sick, I guess. Last summer from April to September,

she was not sick even once, not even a cold!!! It was heaven. But this winter

has made up for it!! Oh well.

Don't worry that Sydni's " not sick enough " , because any infection can be

scary. 's meningitis was directly caused by an unresolved ear infection

(she took two courses of antibiotics that were not strong enough for this

particular bug). So to me, there's no such thing as " just " an ear infection.

And it also depends on Sydni's exposure. I mean, if she is around other sick

kids all the time, you might expect her to catch a lot of things. But if

she's noticeably sicker than expected, well then there sure might be a

problem there. Hang in there, you'll start to get more answers soon.

Well, back to the fray. I'm elbow-deep in throw-up towels and evil-smelling

diapers. HELP! :0)

(mom to , age 2, antibody def, IgA, IgM, IgG & subclass def - not

on IGIV yet)

[Guest guest]

, how is doing now?? I'm glad to hear your husband is in town

this time round, and can share the load. Heres hoping for a speedy

recovery,

, and s mum

Re: Traci

>

>

> > Traci, thanks for your words of support.

> >

> > 's not usually this sick, I guess. Last summer from April to

> September,

> > she was not sick even once, not even a cold!!! It was heaven. But this

> winter

> > has made up for it!! Oh well.

> >

> > Don't worry that Sydni's " not sick enough " , because any infection can be

> > scary. 's meningitis was directly caused by an unresolved ear

> infection

> > (she took two courses of antibiotics that were not strong enough for

this

> > particular bug). So to me, there's no such thing as " just " an ear

> infection.

> >

> > And it also depends on Sydni's exposure. I mean, if she is around other

> sick

> > kids all the time, you might expect her to catch a lot of things. But if

> > she's noticeably sicker than expected, well then there sure might be a

> > problem there. Hang in there, you'll start to get more answers soon.

> >

> > Well, back to the fray. I'm elbow-deep in throw-up towels and

> evil-smelling

> > diapers. HELP! :0)

> >

> > (mom to , age 2, antibody def, IgA, IgM, IgG & subclass def -

> not

> > on IGIV yet)

> >

> > 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.

> >

> >

[Guest guest]

, how is doing now?? I'm glad to hear your husband is in town

this time round, and can share the load. Heres hoping for a speedy

recovery,

, and s mum

Re: Traci

>

>

> > Traci, thanks for your words of support.

> >

> > 's not usually this sick, I guess. Last summer from April to

> September,

> > she was not sick even once, not even a cold!!! It was heaven. But this

> winter

> > has made up for it!! Oh well.

> >

> > Don't worry that Sydni's " not sick enough " , because any infection can be

> > scary. 's meningitis was directly caused by an unresolved ear

> infection

> > (she took two courses of antibiotics that were not strong enough for

this

> > particular bug). So to me, there's no such thing as " just " an ear

> infection.

> >

> > And it also depends on Sydni's exposure. I mean, if she is around other

> sick

> > kids all the time, you might expect her to catch a lot of things. But if

> > she's noticeably sicker than expected, well then there sure might be a

> > problem there. Hang in there, you'll start to get more answers soon.

> >

> > Well, back to the fray. I'm elbow-deep in throw-up towels and

> evil-smelling

> > diapers. HELP! :0)

> >

> > (mom to , age 2, antibody def, IgA, IgM, IgG & subclass def -

> not

> > on IGIV yet)

> >

> > 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.

> >

> >

[Guest guest]

Our old pediatrician always said that young kids can't get sinus infections.

It used to drive me nuts! The ENT and the immunologist say otherwise of

course and I've seen them in my kids so I know they CAN and DO!!

Grace Caroline 8/14/97

Caelan 8/26/99

[Guest guest]

Our old pediatrician always said that young kids can't get sinus infections.

It used to drive me nuts! The ENT and the immunologist say otherwise of

course and I've seen them in my kids so I know they CAN and DO!!

Grace Caroline 8/14/97

Caelan 8/26/99

[Guest guest]

Traci,

Has your daughter had any issues with egg or dairy allergy? My daughter had

recurrent ear infections at around 12 months of age (well 8 mos to 15mos)

until we figured out that she was allergic to eggs (skin testing) and

removed anything with eggs from her diet. She immediately quit having

infections. It might be worth getting soem allergy testing even at her age.

My son is 20 mos and was tested at 12 mos and again at 16 mos and he shows

positive to his allergies (and we know they are true)...milk, eggs, peanuts,

tomatoes, peas, carrots and squash plus some drugs. It might be worth a

try.

Grace 8/97 (Diagnosis? Was Iga Def w/ some IgG def, asthma, allergies,

sinus problems, hair loss, tummy problems)

Caelan 8/99 (Diagnosis? Was IgA def, asthma, allergies (food and airborne),

sinus problems, enlarged adenoids, ear infections, reflux, GI issues)

>

[Guest guest]

Traci,

Has your daughter had any issues with egg or dairy allergy? My daughter had

recurrent ear infections at around 12 months of age (well 8 mos to 15mos)

until we figured out that she was allergic to eggs (skin testing) and

removed anything with eggs from her diet. She immediately quit having

infections. It might be worth getting soem allergy testing even at her age.

My son is 20 mos and was tested at 12 mos and again at 16 mos and he shows

positive to his allergies (and we know they are true)...milk, eggs, peanuts,

tomatoes, peas, carrots and squash plus some drugs. It might be worth a

try.

Grace 8/97 (Diagnosis? Was Iga Def w/ some IgG def, asthma, allergies,

sinus problems, hair loss, tummy problems)

Caelan 8/99 (Diagnosis? Was IgA def, asthma, allergies (food and airborne),

sinus problems, enlarged adenoids, ear infections, reflux, GI issues)

>

[Guest guest]

Traci:

ONLY has problems with liquid cow's milk, including lactose-free

brands, organic, etc. She has NO problems with yogurt, cheese, ice cream,

cottage cheese, etc. Good thing, too, because she went through a phase from

about 1yr to 2yrs of age where about the only thing she would ever eat was

cheese! Someone here mentioned that there is something about the processing

of all those products that makes them OK for the milk-allergic person,

because I was confused how she would tolerate all that other stuff so well.

We're trying to figure out what's making continuously sick since May.

It's either our general relaxed precautions, playing with the train sets in

public toy stores or playing with her cousin. I have a feeling it's most

likely the cousin. So I'm avoiding her secretly as I don't want to hurt

anyone's feelings. So far so good... has been well now for three

days!!! Wheeeeeeeeeee!!

A little kid coughed right in her face at Mc's day before last and

today she played with the trains, so we'll see.

Until this past November, was super super super healthy since I quit my

job 10/99. But November 2000 to present has been a trial, and she doesn't

even have that much exposure. So we need to figure that out. Funny, for a

while there I thought we were home free...

Anyway, I wanted to tell you the main places we take precautions with:

doorknobs, elevator buttons, shopping cart handles, restaurant tables,

anything in a public restroom. I open all doors for , and if she touches

something she shouldn't I " Purell " her hands. We all Purell the moment we

walk in our condo, especially my husband who is out working in the real

world! (handling money, no less-- he's a banker) I always keep a packet of

antibacterial hand wipes on me (lots of brands, in packs that fit in a purse

or diaper bag or even a pocket), and I clean off shopping cart handles and

restaurant tables, it takes only a few seconds. Our immuno said doorknobs and

elevator buttons are COVERED in germs. I know when had a cold she

smeared mucus all over a shopping cart handle, but I had the consideration to

clean every nook and cranny after she was out of it. Most people probably

wouldn't. Last year these were the only " treatments " received and she

didn't have so much as even a cold from April through September!

Sorry so long, I'm rambling!

(mom to , age 2, polysaccharide antibody def, IgA def)

[Guest guest]

Traci:

ONLY has problems with liquid cow's milk, including lactose-free

brands, organic, etc. She has NO problems with yogurt, cheese, ice cream,

cottage cheese, etc. Good thing, too, because she went through a phase from

about 1yr to 2yrs of age where about the only thing she would ever eat was

cheese! Someone here mentioned that there is something about the processing

of all those products that makes them OK for the milk-allergic person,

because I was confused how she would tolerate all that other stuff so well.

We're trying to figure out what's making continuously sick since May.

It's either our general relaxed precautions, playing with the train sets in

public toy stores or playing with her cousin. I have a feeling it's most

likely the cousin. So I'm avoiding her secretly as I don't want to hurt

anyone's feelings. So far so good... has been well now for three

days!!! Wheeeeeeeeeee!!

A little kid coughed right in her face at Mc's day before last and

today she played with the trains, so we'll see.

Until this past November, was super super super healthy since I quit my

job 10/99. But November 2000 to present has been a trial, and she doesn't

even have that much exposure. So we need to figure that out. Funny, for a

while there I thought we were home free...

Anyway, I wanted to tell you the main places we take precautions with:

doorknobs, elevator buttons, shopping cart handles, restaurant tables,

anything in a public restroom. I open all doors for , and if she touches

something she shouldn't I " Purell " her hands. We all Purell the moment we

walk in our condo, especially my husband who is out working in the real

world! (handling money, no less-- he's a banker) I always keep a packet of

antibacterial hand wipes on me (lots of brands, in packs that fit in a purse

or diaper bag or even a pocket), and I clean off shopping cart handles and

restaurant tables, it takes only a few seconds. Our immuno said doorknobs and

elevator buttons are COVERED in germs. I know when had a cold she

smeared mucus all over a shopping cart handle, but I had the consideration to

clean every nook and cranny after she was out of it. Most people probably

wouldn't. Last year these were the only " treatments " received and she

didn't have so much as even a cold from April through September!

Sorry so long, I'm rambling!

(mom to , age 2, polysaccharide antibody def, IgA def)

[Guest guest]

Traci:

ONLY has problems with liquid cow's milk, including lactose-free

brands, organic, etc. She has NO problems with yogurt, cheese, ice cream,

cottage cheese, etc. Good thing, too, because she went through a phase from

about 1yr to 2yrs of age where about the only thing she would ever eat was

cheese! Someone here mentioned that there is something about the processing

of all those products that makes them OK for the milk-allergic person,

because I was confused how she would tolerate all that other stuff so well.

We're trying to figure out what's making continuously sick since May.

It's either our general relaxed precautions, playing with the train sets in

public toy stores or playing with her cousin. I have a feeling it's most

likely the cousin. So I'm avoiding her secretly as I don't want to hurt

anyone's feelings. So far so good... has been well now for three

days!!! Wheeeeeeeeeee!!

A little kid coughed right in her face at Mc's day before last and

today she played with the trains, so we'll see.

Until this past November, was super super super healthy since I quit my

job 10/99. But November 2000 to present has been a trial, and she doesn't

even have that much exposure. So we need to figure that out. Funny, for a

while there I thought we were home free...

Anyway, I wanted to tell you the main places we take precautions with:

doorknobs, elevator buttons, shopping cart handles, restaurant tables,

anything in a public restroom. I open all doors for , and if she touches

something she shouldn't I " Purell " her hands. We all Purell the moment we

walk in our condo, especially my husband who is out working in the real

world! (handling money, no less-- he's a banker) I always keep a packet of

antibacterial hand wipes on me (lots of brands, in packs that fit in a purse

or diaper bag or even a pocket), and I clean off shopping cart handles and

restaurant tables, it takes only a few seconds. Our immuno said doorknobs and

elevator buttons are COVERED in germs. I know when had a cold she

smeared mucus all over a shopping cart handle, but I had the consideration to

clean every nook and cranny after she was out of it. Most people probably

wouldn't. Last year these were the only " treatments " received and she

didn't have so much as even a cold from April through September!

Sorry so long, I'm rambling!

(mom to , age 2, polysaccharide antibody def, IgA def)

[Guest guest]

Traci:

I really don't understand how everybody gets different parameters from every

different place. That's crazy!!! It should be ONE standardized parameter,

don't you think? I mean, is that so hard to grasp? I'm gonna try to ask some

people about that at the conference.

All I know is a top immuno guy told us that at age two he'd only expect

's IgG to be in the 400s and that would be normal. She's over that level

now so that's good.

I don't know if I asked this before but does Sydni have any allergies? Reason

I ask is I don't have any PID that I know of but when I was having trouble

with allergies I had one horrible sinus infection after another and basically

lived on Bactrim. has NO allergy symptoms (like sneezing, runny nose or

watery eyes), but tends to get those dark dark allergic shiners. ??????

Well, off to Baltimore tomorrow! I'm all for the green ribbon idea... I'll be

looking for the PedPID ladies!

(mom to , age 2, polysaccharide antibody def, IgA def)

[Guest guest]

Traci:

I really don't understand how everybody gets different parameters from every

different place. That's crazy!!! It should be ONE standardized parameter,

don't you think? I mean, is that so hard to grasp? I'm gonna try to ask some

people about that at the conference.

All I know is a top immuno guy told us that at age two he'd only expect

's IgG to be in the 400s and that would be normal. She's over that level

now so that's good.

I don't know if I asked this before but does Sydni have any allergies? Reason

I ask is I don't have any PID that I know of but when I was having trouble

with allergies I had one horrible sinus infection after another and basically

lived on Bactrim. has NO allergy symptoms (like sneezing, runny nose or

watery eyes), but tends to get those dark dark allergic shiners. ??????

Well, off to Baltimore tomorrow! I'm all for the green ribbon idea... I'll be

looking for the PedPID ladies!

(mom to , age 2, polysaccharide antibody def, IgA def)

[Guest guest]

,

I had gotten caught up in all the number the parameters of everything and

found out everyone would tell me something. I had a doctor tell me

something that really made since to me. I don't worry about the numbers

anymore(not that they don't tell information)_ but all bodies are fearfully

and wonderfully made and may not work exactly the same way. Enjoy your

children! When they are not sick rejoice and when they are pray that the

medication will work. I found out my daughter who is 11 now does much

better (and al lot less doctor appointments) if we treat her the way she's

feels not treat her according to her numbers. 's numbers are NEVER in

the range the doctors say they should be but she has been doing well. I as

so glad that I don't even look at the test results anymore. It allows me

much more time to enjoy my daughter.

Just a tid bit of my life

Lorri ( 11yrs CVID)

Re: Traci

>

[Guest guest]

,

I had gotten caught up in all the number the parameters of everything and

found out everyone would tell me something. I had a doctor tell me

something that really made since to me. I don't worry about the numbers

anymore(not that they don't tell information)_ but all bodies are fearfully

and wonderfully made and may not work exactly the same way. Enjoy your

children! When they are not sick rejoice and when they are pray that the

medication will work. I found out my daughter who is 11 now does much

better (and al lot less doctor appointments) if we treat her the way she's

feels not treat her according to her numbers. 's numbers are NEVER in

the range the doctors say they should be but she has been doing well. I as

so glad that I don't even look at the test results anymore. It allows me

much more time to enjoy my daughter.

Just a tid bit of my life

Lorri ( 11yrs CVID)

Re: Traci

>

[Guest guest]

Traci - what part of Florida is Sarasota in?

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux,

Sensory Integration Disorder, Diabetes

Insipidus)

http://home.att.net/~maceyh/

[Guest guest]

Traci,

it is really nice to hear from you again. I hope that you are feeling better

and please do not worry about posting so much Traci...you are always here and

thank you for your very kind and supportive words. You hit the nail right on

the head Traci. Please send me your email address when you get a chance, okay

Traci.....Be well friend and I am glad that you made it through the holidays and

are here again.

Love. Sue #2

[Guest guest]

Traci,

it is really nice to hear from you again. I hope that you are feeling better

and please do not worry about posting so much Traci...you are always here and

thank you for your very kind and supportive words. You hit the nail right on

the head Traci. Please send me your email address when you get a chance, okay

Traci.....Be well friend and I am glad that you made it through the holidays and

are here again.

Love. Sue #2

[Guest guest]

Traci,

it is really nice to hear from you again. I hope that you are feeling better

and please do not worry about posting so much Traci...you are always here and

thank you for your very kind and supportive words. You hit the nail right on

the head Traci. Please send me your email address when you get a chance, okay

Traci.....Be well friend and I am glad that you made it through the holidays and

are here again.

Love. Sue #2

[Guest guest]

Traci,

As I mentioned earlier...I woke up on fire...my face and actually my neck and

down my arms were really hot. I felt like I had a sunburn also. Do you take

MTX? I'm just curious if maybe that could be the problem??? I'm on 40/60mg

pred. alternating days so I guess that could be it also, but I thought the

prednisone was suppose to bring down the fever? Also, I've been on that much

prednisone and more before and did not get this feeling. I'm so confused????

The more I talk to the doctors the less I understand sometimes...Don't listen to

me..I " m all neg'd out tonight. I feel like crap.

Love and Hugs, Kim

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

[Guest guest]

Traci,

As I mentioned earlier...I woke up on fire...my face and actually my neck and

down my arms were really hot. I felt like I had a sunburn also. Do you take

MTX? I'm just curious if maybe that could be the problem??? I'm on 40/60mg

pred. alternating days so I guess that could be it also, but I thought the

prednisone was suppose to bring down the fever? Also, I've been on that much

prednisone and more before and did not get this feeling. I'm so confused????

The more I talk to the doctors the less I understand sometimes...Don't listen to

me..I " m all neg'd out tonight. I feel like crap.

Love and Hugs, Kim

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

[Guest guest]

Traci,

As I mentioned earlier...I woke up on fire...my face and actually my neck and

down my arms were really hot. I felt like I had a sunburn also. Do you take

MTX? I'm just curious if maybe that could be the problem??? I'm on 40/60mg

pred. alternating days so I guess that could be it also, but I thought the

prednisone was suppose to bring down the fever? Also, I've been on that much

prednisone and more before and did not get this feeling. I'm so confused????

The more I talk to the doctors the less I understand sometimes...Don't listen to

me..I " m all neg'd out tonight. I feel like crap.

Love and Hugs, Kim

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

[Guest guest]

Traci,

No, I don't get the streaking or any cut type marks. I just get really hot, red

and like I'm on fire...it could just be the fever. I notice this happens

usually in the evening on Thurs. and Friday (and the mornings when I wake until

meds kick in). I take my MTX injection around 8:30pm on Tues. So, Tues. night

I usually sleep well, Wed I fell pretty ok then Thurs and Friday I feel bad and

then I'm ok again...usually...it depends...but this is the case more often than

not and in varying degrees of severity. It feels almost like I’m burning from

the inside out. The only other time I’ve felt anything like this (before my

onset) was after giving birth to my son, , when they gave me magnesium

sulfate ( " The Mag " as they so affectionately call it). It was to bring down my

blood pressure as I was having seizures from eclampsia. That stuff was terrible

and it gave me that burning from the inside out feeling. Now, whatever is

causing this feeling in me now is not as severe as what I felt on “the Mag”.

It’s much more mild than that. What I may be experiencing may just be a

different sort of “still’s” rash and high fever. It’s just that I didn’t notice

anything quite like this until the MTX started. I sweat horribly before MTX and

since. Actually I go from being hot to cold to hot to cold etc….every time I

cool down I sweat and shed my clothes. This goes on daily and nightly every

day…day in and day out…good days or bad days. I’m sure it contributes to my

acne problem. The sweating is the worst. If I go into someplace really warm…I

feel like I’m going to get sick. I don’t like to go to visit at friends because

if their house is too hot I get sick…and want to run, but don’t want to be rude

either. All these things I never thought of before I was sick. Now when

someone comes to my house I ask…would you like something to drink?, are you too

cold?…too hot?…can I get you something to eat?…. take your temp? etc…

hehehehehe….Also, please make yourself at home and feel free to shed your

clothes

My son, Ian, got up bright and early this morning. I forgot what it was like

to have my 2 year old around…give me a little break and I get spoiled.

Actually, I’m having fun caring for him. I’m back to typing my messages in

MicroSoft Word so that I can get to them as I need to…and cut and paste them

into messages as I can…because…as those that have ever had or have a 2 year old

know....sitting long enough to type a whole message is just simply NOT going to

happen. Oh, I’m so glad to have him home. He brings me more smiles than I

could count. He really is precious and I’m not just saying that because he’s

mine

Well, Traci…I don’t know what’s going on with us sweetie or if it’s the same

thing but I sure wish…for the both of us…that it would stop! Has your doctor

checked your RA factor lately? I just wonder because skin sensitivity can be

signs of other things…not to worry, but you may want him to just give it a

check.

Love and Hugs Traci! Kim

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