HI from Dale

[Guest guest]

Hi Dale!

You know how the holidays are... just nutty. Then I got violently ill 12

hours after a Christmas Eve luncheon, heartburn, then nausea, fought off

vomiting,

then had horrible diarrhea, then gave in to the vomiting, when that stopped I

was 102+, when that broke the body aches started. Absolutely no upper

respiratory symptoms. Don't know if it was food poisoning or other gastro virus,

but

nobody else got it. Was in bed about 34 hours total. Fun Christmas Day! NOT! I

threw up in the bathroom garbage can, then cleaned that up, went upstairs and

watched the girls open their presents, then went to bed. DH had a TV dinner

for Christmas dinner and the girls had waffles that I had made previously and

frozen.

About a week or two before that, I found a lump in my underarm. Couldn't

believe it, so was looking for it some more and couldn't find it, rooted around

enough that the whole area became inflamed and sooo sore. Waited a couple days

then couldn't find the lump. Decided to wait and see. Found it again Sunday,

saw doc yesterday. It is deep in there, jellybean size but not hard. Doc said it

seemed " too big and long " to be a lymph node (uh, YEAH, that's why I'm

HERE!), thought " maybe " it was muscle tissue? So she didn't know. I obviously

didn't

like that answer. I was glad she thought it didn't feel like a node, because

axillary nodes, while palpable in children normally, are not supposed to be

palpable in adults. I have no infections that would account for it, so the only

thing left was the big " C " . Scared out of my mind.

So she scheduled me for a standard " screening " mammogram since I've never had

one (not a diagnostic because she didn't think anything was going on), as

well as an axillary ultrasound. Did that today, mammogram was perfect, US found

nothing. Mammogram nurse felt the lump, so it's not like I'm imagining it.

Radiologist said wait and watch, have my doc follow it. He said you could always

show it to a surgeon and if they could keep ahold of it they could stick a

needle in it, but he didn't think it was necessary. He said it's either normal

breast tissue or there's always the chance something is " hiding " . But how can

breast tissue (or a " muscle " ) be jelly-bean sized and shaped??? The side view on

the mammogram does look at least somewhat into the underarm area, so that's

comforting... somewhat.

It's crazy because they want you to do these self exams, and you're not

expecting to find anything, and then when you find something, they say, " I

wouldn't

worry about it. " And DH can't say the right things, first he said " I'm sure

it's nothing " (have you not SEEN " Terms of Endearment " ?), then another time he

pointed out that that's why women live longer than men, because they " check

out every little thing. " I know what he means, but to me, a lump under the arm

is not a " little thing " . I was scared snotless!

So what I think I will do is schedule a regular physical sooner rather than

later (I skipped it last year) and make sure they do blood work. Aargh!

's fatigue was much better over the holiday break, so I think the school

day is just a bit long for her. Still having a record year for her for fewest

illnesses (during school year starting in September), though!!! wheeeeeeee!

(mom to , age 6-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

Hell Dale, we are all doing well. I am still waiting for test results for me

but has been well. His treatment is Thurs. the ten grams has really

helped him alot. Thanks for asking. How was your new year...Dawn mother cvid

and cvid, acid reflux, developmental delay, torticolis, sensory

integration dysfunction.

Dale Weatherford <dale@...> wrote: from Dale,

Boy, the group has been quiet lately -- is everyone sick????

Just thinking of you guys and wondering how everyone survived the holidays.

In His service,

Dale

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]

Hi Dale,

here, I hope you are well and things are OK. Happy New Year by the way!!

Things are hectic here as usual, is doing fantastic on her IVIG, she is

getting 10 gms of Gamunex every 2 weeks, and her port is functioning fine. She

has had only 3 sinus infections this year and her port infection, a few

scattered GI bugs here and there. We have never had such a healthy year. Her

schooling is going well, the school continues to teach her here at home, I think

that has a lot to do with her low infection rate as well. Her grades are good,

she is feeling so much better that this summer and fall she played on a soccer

team, started showing her Miniature Horse and actually saved up enough to buy a

second Mini. 'This winter she wants to learn to ski, she went last weekend and

skied 2 days did well but was exhausted for the 2 days afterward. Big doings for

our little girl. She has even gained a little weight which is always an issue

for her ( she is on 2 supplements and an appetite increaser) but all is good.

On the other hand, I am continued to be tested for a PID myself, after much

testing, revaccinated etc, you know the drill ,t has been decided that I do

have one, so now I am in the process of getting an Immunologist for myself( I

have an appt the 13th). All my testing has been done by my Primary Dr, being

helped along by her Immunologist buddy at Princeton. My IgG is just in range, by

about 1 point, had been lower, I made 5 antibodies out of 14 ( I think) for the

pneumovax, those 5 weren't great responses either, but I was rechecked and they

are now all 0. So she feels she wants to do some other testing?? and that I will

need IVIG. Bummer, but I am so tired of being sick. At least I know how

felt through testing and before her IVIG etc, it is not fun. Oh well, at least I

know why I feel so bad so much.

Otherwise we are well. we just bought property in Aug and are hoping to build in

the summer, and than move 's horses so she can see them out her bedroom

window and play with them everyday. That is what she has asked for.

I hope all the pumpkins and their families had a good and healthy holiday

season. Our prayers go out to you all.

mom to - CVID, asthma, GERD

Hi from Dale

from Dale,

Boy, the group has been quiet lately -- is everyone sick????

Just thinking of you guys and wondering how everyone survived the holidays.

In His service,

Dale

[Guest guest]

Hi Dale,

here, I hope you are well and things are OK. Happy New Year by the way!!

Things are hectic here as usual, is doing fantastic on her IVIG, she is

getting 10 gms of Gamunex every 2 weeks, and her port is functioning fine. She

has had only 3 sinus infections this year and her port infection, a few

scattered GI bugs here and there. We have never had such a healthy year. Her

schooling is going well, the school continues to teach her here at home, I think

that has a lot to do with her low infection rate as well. Her grades are good,

she is feeling so much better that this summer and fall she played on a soccer

team, started showing her Miniature Horse and actually saved up enough to buy a

second Mini. 'This winter she wants to learn to ski, she went last weekend and

skied 2 days did well but was exhausted for the 2 days afterward. Big doings for

our little girl. She has even gained a little weight which is always an issue

for her ( she is on 2 supplements and an appetite increaser) but all is good.

On the other hand, I am continued to be tested for a PID myself, after much

testing, revaccinated etc, you know the drill ,t has been decided that I do

have one, so now I am in the process of getting an Immunologist for myself( I

have an appt the 13th). All my testing has been done by my Primary Dr, being

helped along by her Immunologist buddy at Princeton. My IgG is just in range, by

about 1 point, had been lower, I made 5 antibodies out of 14 ( I think) for the

pneumovax, those 5 weren't great responses either, but I was rechecked and they

are now all 0. So she feels she wants to do some other testing?? and that I will

need IVIG. Bummer, but I am so tired of being sick. At least I know how

felt through testing and before her IVIG etc, it is not fun. Oh well, at least I

know why I feel so bad so much.

Otherwise we are well. we just bought property in Aug and are hoping to build in

the summer, and than move 's horses so she can see them out her bedroom

window and play with them everyday. That is what she has asked for.

I hope all the pumpkins and their families had a good and healthy holiday

season. Our prayers go out to you all.

mom to - CVID, asthma, GERD

Hi from Dale

from Dale,

Boy, the group has been quiet lately -- is everyone sick????

Just thinking of you guys and wondering how everyone survived the holidays.

In His service,

Dale

[Guest guest]

Hi Dale!

The holidays have kept us very busy also. Remarkably has been the

healthiest person in our household. My other two children both had sinus

infections the week before Christmas. Our kitchen counter looked like a

pharmacy with all the medicines and we had two nebulizer running constantly.

Luckily everyone was feeling much better by Christmas day.

As far as goes, the lab re-ran the blood test that originally came back

with two different IgG levels. This test confirmed that his IgG level is below

normal at 463 so the Immunologist and Infectouse Disease Doctor are still

classifying him as mild CVID. The great news is that he responded well to the

pneumococcal vaccine and the recent re-administered vaccines of tetanus,

Diptheria and HIB. His immune system responded well with antibodies above

average.

He has completed four weeks on Septra and has been infection free. This is huge

b/c for the past year he would be on antibiotics for three weeks to clear a

sinus infection then two weeks after completing the antibiotics he was have

another active infection. As long as he remains infection free, he won't need

IVIG.

His esosinophils were very high as well as his WBC. This was the direct result

of allergies. We had a full panel of allergens tested and he tested positive to

peanuts, cats, dogs, dust mites, cokroaches, mold, various grasses, ragweed and

ash trees. Because of his history of severe asthma attacks the Allergist highly

recommended to change as much of his environment as possible. We plan to rip

the carpet out of his room, put allergen covers on matress/box springs and

pillow, install a hepa air filter in his room (no ionizer) and get rid of our 11

year old Cocker Spaniel. We think we found a good home for our dog. It will be

hard to give her up but necessary for his continued health.

I feel like all this is trivial compared to what everyone else is currently

going through in our group. To the entire group: My prayers are with all of you

and your children. I feel so blessed to have found such a fabulous group of

people. I have learned so much from all of you. Thank you for sharing.

Dale, and extra special thank you for all your help and incredible knowledge.

You have a beautiful ability sharing your knowledge of PID and compassionate

support to all of us parents. You have provided me comfort and answers during a

time that I felt lost about having a child with an Immune Deficiency. You are

definately doing " His Service " and I thank you.

Here's hoping for a healthier New Year to all!

Mom to , 3, CVID, asthma, eczema, peanut allergy, environmental allergies,

cronic sinusitus

, 4, healthy

, 7, asthma, eczema, environ. allergies

www.caringbridge.org/visit/thomasreising/

Hi from Dale

from Dale,

Boy, the group has been quiet lately -- is everyone sick????

Just thinking of you guys and wondering how everyone survived the holidays.

In His service,

Dale

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]

Hi Dale!

The holidays have kept us very busy also. Remarkably has been the

healthiest person in our household. My other two children both had sinus

infections the week before Christmas. Our kitchen counter looked like a

pharmacy with all the medicines and we had two nebulizer running constantly.

Luckily everyone was feeling much better by Christmas day.

As far as goes, the lab re-ran the blood test that originally came back

with two different IgG levels. This test confirmed that his IgG level is below

normal at 463 so the Immunologist and Infectouse Disease Doctor are still

classifying him as mild CVID. The great news is that he responded well to the

pneumococcal vaccine and the recent re-administered vaccines of tetanus,

Diptheria and HIB. His immune system responded well with antibodies above

average.

He has completed four weeks on Septra and has been infection free. This is huge

b/c for the past year he would be on antibiotics for three weeks to clear a

sinus infection then two weeks after completing the antibiotics he was have

another active infection. As long as he remains infection free, he won't need

IVIG.

His esosinophils were very high as well as his WBC. This was the direct result

of allergies. We had a full panel of allergens tested and he tested positive to

peanuts, cats, dogs, dust mites, cokroaches, mold, various grasses, ragweed and

ash trees. Because of his history of severe asthma attacks the Allergist highly

recommended to change as much of his environment as possible. We plan to rip

the carpet out of his room, put allergen covers on matress/box springs and

pillow, install a hepa air filter in his room (no ionizer) and get rid of our 11

year old Cocker Spaniel. We think we found a good home for our dog. It will be

hard to give her up but necessary for his continued health.

I feel like all this is trivial compared to what everyone else is currently

going through in our group. To the entire group: My prayers are with all of you

and your children. I feel so blessed to have found such a fabulous group of

people. I have learned so much from all of you. Thank you for sharing.

Dale, and extra special thank you for all your help and incredible knowledge.

You have a beautiful ability sharing your knowledge of PID and compassionate

support to all of us parents. You have provided me comfort and answers during a

time that I felt lost about having a child with an Immune Deficiency. You are

definately doing " His Service " and I thank you.

Here's hoping for a healthier New Year to all!

Mom to , 3, CVID, asthma, eczema, peanut allergy, environmental allergies,

cronic sinusitus

, 4, healthy

, 7, asthma, eczema, environ. allergies

www.caringbridge.org/visit/thomasreising/

Hi from Dale

from Dale,

Boy, the group has been quiet lately -- is everyone sick????

Just thinking of you guys and wondering how everyone survived the holidays.

In His service,

Dale

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]

,

This does not sound THAT trivial:-). It sounds like you are in the process of

turning the house inside out! It does sound like things are going well with

.

Offering prayers for the family's adjustment to allergy lifestyle.....

Fisher

mom of Calvin, 4yo, XLA

Reising <screising@...> wrote:

His esosinophils were very high as well as his WBC. This was the direct result

of allergies. We had a full panel of allergens tested and he tested positive to

peanuts, cats, dogs, dust mites, cokroaches, mold, various grasses, ragweed and

ash trees. Because of his history of severe asthma attacks the Allergist highly

recommended to change as much of his environment as possible. We plan to rip

the carpet out of his room, put allergen covers on matress/box springs and

pillow, install a hepa air filter in his room (no ionizer) and get rid of our 11

year old Cocker Spaniel. We think we found a good home for our dog. It will be

hard to give her up but necessary for his continued health.

I feel like all this is trivial compared to what everyone else is currently

going through in our group.

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

Photos

Ring in the New Year with Photo Calendars. Add photos, events, holidays,

whatever.

[Guest guest]

Dale,

What wonderful news about Katy! All those prayers are working. What an

inspiration!

You are an ispiration too...having the strength to let your daughter spread her

wings and establish her independence. I'm sure many of the parents feel

very protective of their special children and it is hard to let them experience

life w/out their parents hovering over them. The best we can do as parents is

teach them to make good decisions in life based on the moral beliefs we have

instilled in them. You have taught Katy well! Give yourself a pat on the

back!!!!

I am encouraged by Katy's health improvement that there is hope to possibly

outgrow an Immune Deficiency. May prayers are with you to maintain your

strength as a mom and for Katy's continued good health. You are such an

valuable person to this group ...thanks so much for sharing. I love getting

those " good news " e-mails...it's like sunshine on a dreary winter day.

Keep FROG(Fully Rely On God)gin!!!

Mom to

, 3, CVID, asthma, eczema, chronic sinus infections, peanut allergy,

environmental allergies

, 4, healthy

, 7, asthma, eczema, environ. allergies

www.caringbridge.org/visit/thomasreising

Hi from Dale

from Dale,

Hi to all. I'm hesitant to post this -- and excited at the same time.

I've talked with Katy several times recently (for those that don't know

-- she eloped in August and declared her independence). At first she

was terrified and determined to not show it because she couldn't afford

her Sub-Q. She had her last dose in August. So, I prayed for her

health safety.

In November she told me she was fine - hadn't been sick at all and she'd

decided that she was well and didn't need Sub-Q anymore. I thought --

yes, there's still enough IgG from the last infusion floating around.

So I kept praying for her health safety.

In early December she said that she was going to pierce her ears for

Christmas. She's pierced 3 places so far and all have rotted out with

infection. Not a pretty site -- so like every good mother, I said,

" it's your body. " (Note -- she is over 21!) She doesn't want my input

-- so I don't give it. Besides what could I say except 'How can you be

so stupid? "

She called last weekend and said, " I've proved it. " She had gotten her

ears pierced over Christmas weekend and they had already healed properly

-- no oozing, no redness, no swelling. They had just healed up

perfectly. Also, the lady she works with had gotten that virus with

heacache, sore throat and vomiting that was going around over Christmas

and had been off work for a week. Katy came down with it over New

Year's and only missed 3 days of work. It was clearing and she called

to tell me the great news.

So.... I write to tell all of you -- there's hope. Some kids do I

outgrow it.

I'm also writing to say -- what do you think? Could what we've prayed

for, for so long really be happening? She can't afford to see a

doctor, let alone an immunologist. Do I dare believe this without blood

work? " O ye of little faith. "

So.... if this is an encouragement to anyone -- then I'm glad. I'll

keep you all posted as to how the year goes without Sub-Q and I think

I'll reserve my celebrating until August of 2006!

For the new people -- Katy became ill at age 11. Was finally diagnosed

at age 13. Here were her numbers in August 1997 and the " normal " levels

I was given.

IgG 381 normal 694-1618

IgA 11 normal 68-378

IgM 18 normal 60-263

In 2000 her

IgG went up to 827 on IVIG and we decided she needed an increase in dosage.

Her IgA went down to 9

and her IgM was down to 13.

We were also told that she had slight readings on IgD and IgE -- but too

low to report.

She was so sick from age 11 until about 6 months ago. Then she quit

Sub-Q out of necessity to pursue her dreams -- and Wow!

Anyway,

Hope this encourages all -- but know that I'm still reserving judgment

for a while! I don't want to give false hope -- but I don't want to

miss an opportunity to share good news! We all need that!

In His service,

Dale

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]

well said, Dale. We are in our 7th year of homeschooling-- we chose to

homeschool long before we even had our two " sick " children. I often tell people

that God had a plan for that----

Every family is different and has to make the choice that is best for the

child(ren)/family.

+JMJ+

Peace Be With You,

><>Pattie

Piedmont Triad, NC

Mom to , age 11 & healthy; age 9, Shwachman-Diamond Syndrome; and

ph age 8, Shwachman-Diamond Syndrome.

[Guest guest]

yeah, we all are different and have different styles. myself, I am the

type to help hold down the kid and try to console them as they are

being held down.followed by a bribe. that is just the way I have

always been.

I think the hardest thing is that as moms, we are pre-programmed to

" protect " our kids from harm, but in our cases, protecting them from

harm means subjecting them to pain. It goes against our natural

instinct of what to do.

That is exactly why I feel so split. valarie

[Guest guest]

Thinking about you this weekend...

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)