Hi from Dale

[Guest guest]

Dale: Glad you had a good Christmas and hope your husband is on the mend.

They did not diagnose my mother with cvid until she was in her sixties. She

passed away nine years later, I wish we had known sooner,

take care and God Bless,

annette and alissa

>From: DaleMWeath@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Hi from Dale

>Date: Wed, 29 Dec 1999 12:46:58 EST

>

>from Dale, Mom to Katy, CVID, age 15

>

>Hi to all! We're finally home from a very long, very stressful trip.

>But,

>I got to spend time with my parents and that was the major goal. Katy

>made

>the trip fairly well. But everytime she complained, my mother would make a

>crack about her obvious need for my 100% attention. So, I feel like I've

>been stretched on the rack between two generations who have no idea how the

>other works.

>

>, my husband, was the major source of concern for the whole trip. We

>arrived on Wednesday the 15th, and he thought he pulled a groin muscle on

>Thursday. He starting a high fever and was really miserable with it, so on

>Friday I actually got around to checking out the groin area and discovered

>he

>had major cellulitis from the knee down on his right leg. The groin pain

>was

>simply the lymph gland exploding with pain! I took him to the ER and

>they

>started him on antibiotics and sent us home (2:00 a.m. and 30 miles of

>country roads back to my parent's house). He was no better in 24 hours,

>so

>I took him back. We sat in ER again for 6 hours but at 2:00 a.m., got a

>Rocephen (I'm not sure of the spelling) shot and were sent home again.

>They said it would be majorly better in 3 days - so we waited. In 3 days

>he

>was worse, so I took him back to ER. 2:00 a.m. seems to be their favorite

>hour. They gave him another Rocephen shot, changed his antibiotic to

>Augmentum and told me if he wasn't better in 24 hours to bring him back.

>But, finally -- it worked. Everyday he gets a little better. We are

>supposed to see a doctor here this afternoon to decide what else needs to

>be

>done. It's still pretty angry looking, but no more fever.

>

>I guess my greatest fear is that he will turn out to be immune deficient

>also. The ER doctors kept saying that that wasn't possible for a healthy

>man

>to suddenly become immune deficient, but after what we went through with

>Katy, I KNOW it can happen. So, it's off to the doctor for us again.

>Hopefully, I can get this doctor to run IgG checks just to relieve my mind.

> He also needs to be re-checked for diabetes, although he has never shown

>a

>problem before. Apparently cellulitis is common for diabetics.

>

>So, yes, we had a wonderful Christmas. It wasn't exactly as planned --

>but

>Katy has taught us to never depend on our planning. We had fun in spite

>of

>the generational problems and the health concerns.

>

>Autumn and Tina, I'm still praying daily for both of you. Hang in there.

>Ursula, I'm so glad you found out about the sinus junk -- that's probably

>why

>she wasn't behaving earlier. I don't behave too well with sinus gunk.

>

>I've got to start shoveling out from under this pile of laundry. My Bible

>study class is coming over for New Year's Eve, and right now you can barely

>open the front door. We just came in the door and dropped everything.

>

>God bless you all and send you a Happy and Peaceful New Year.

>

>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.

><< text3.html >>

[Guest guest]

Dale-

Celluatis is really hard to get rid of. Many times

the patient is given IV antibiotics. gets this

ALOT. People and Children who use injectables are

more prone to them. I hope your husband gets better.

If not I wouldn't hesitate the IV antibiotics.

gets 10 days worth usually, but she is immune

compromised.

God Bless

--- DaleMWeath@... wrote:

> from Dale, Mom to Katy, CVID, age 15

>

> Hi to all! We're finally home from a very long,

> very stressful trip. But,

> I got to spend time with my parents and that was the

> major goal. Katy made

> the trip fairly well. But everytime she complained,

> my mother would make a

> crack about her obvious need for my 100% attention.

> So, I feel like I've

> been stretched on the rack between two generations

> who have no idea how the

> other works.

>

> , my husband, was the major source of concern

> for the whole trip. We

> arrived on Wednesday the 15th, and he thought he

> pulled a groin muscle on

> Thursday. He starting a high fever and was really

> miserable with it, so on

> Friday I actually got around to checking out the

> groin area and discovered he

> had major cellulitis from the knee down on his right

> leg. The groin pain was

> simply the lymph gland exploding with pain! I

> took him to the ER and they

> started him on antibiotics and sent us home (2:00

> a.m. and 30 miles of

> country roads back to my parent's house). He was

> no better in 24 hours, so

> I took him back. We sat in ER again for 6 hours but

> at 2:00 a.m., got a

> Rocephen (I'm not sure of the spelling) shot and

> were sent home again.

> They said it would be majorly better in 3 days - so

> we waited. In 3 days he

> was worse, so I took him back to ER. 2:00 a.m.

> seems to be their favorite

> hour. They gave him another Rocephen shot, changed

> his antibiotic to

> Augmentum and told me if he wasn't better in 24

> hours to bring him back.

> But, finally -- it worked. Everyday he gets a

> little better. We are

> supposed to see a doctor here this afternoon to

> decide what else needs to be

> done. It's still pretty angry looking, but no more

> fever.

>

> I guess my greatest fear is that he will turn out to

> be immune deficient

> also. The ER doctors kept saying that that wasn't

> possible for a healthy man

> to suddenly become immune deficient, but after what

> we went through with

> Katy, I KNOW it can happen. So, it's off to the

> doctor for us again.

> Hopefully, I can get this doctor to run IgG checks

> just to relieve my mind.

> He also needs to be re-checked for diabetes,

> although he has never shown a

> problem before. Apparently cellulitis is common

> for diabetics.

>

> So, yes, we had a wonderful Christmas. It wasn't

> exactly as planned -- but

> Katy has taught us to never depend on our planning.

> We had fun in spite of

> the generational problems and the health concerns.

>

> Autumn and Tina, I'm still praying daily for both of

> you. Hang in there.

> Ursula, I'm so glad you found out about the sinus

> junk -- that's probably why

> she wasn't behaving earlier. I don't behave too

> well with sinus gunk.

>

> I've got to start shoveling out from under this pile

> of laundry. My Bible

> study class is coming over for New Year's Eve, and

> right now you can barely

> open the front door. We just came in the door and

> dropped everything.

>

> God bless you all and send you a Happy and Peaceful

> New Year.

>

> 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.

>

<HR>

<html>

>

=====

and

(congential neutropenia, hypogammaglobulinemia, chronic sinusitis and

leukopenia)

mom to Evan 6, 4 and Abby Rose 2

__________________________________________________

[Guest guest]

Dale..I know that with common variable immune deficiency there is a

possibility of it not showing up until the later in life..I would go with

your instinct and have his level checked...I hope he gets better it sounds

like he has been through alot... w mom to Tony

avid, chronic severe neutropenia, chronic sinusitis

Hi from Dale

>From: DaleMWeath@...

>

>from Dale, Mom to Katy, CVID, age 15

>

>Hi to all! We're finally home from a very long, very stressful trip.

But,

>I got to spend time with my parents and that was the major goal. Katy

made

>the trip fairly well. But everytime she complained, my mother would make a

>crack about her obvious need for my 100% attention. So, I feel like I've

>been stretched on the rack between two generations who have no idea how the

>other works.

>

>, my husband, was the major source of concern for the whole trip. We

>arrived on Wednesday the 15th, and he thought he pulled a groin muscle on

>Thursday. He starting a high fever and was really miserable with it, so on

>Friday I actually got around to checking out the groin area and discovered

he

>had major cellulitis from the knee down on his right leg. The groin pain

was

>simply the lymph gland exploding with pain! I took him to the ER and

they

>started him on antibiotics and sent us home (2:00 a.m. and 30 miles of

>country roads back to my parent's house). He was no better in 24 hours,

so

>I took him back. We sat in ER again for 6 hours but at 2:00 a.m., got a

>Rocephen (I'm not sure of the spelling) shot and were sent home again.

>They said it would be majorly better in 3 days - so we waited. In 3 days

he

>was worse, so I took him back to ER. 2:00 a.m. seems to be their favorite

>hour. They gave him another Rocephen shot, changed his antibiotic to

>Augmentum and told me if he wasn't better in 24 hours to bring him back.

>But, finally -- it worked. Everyday he gets a little better. We are

>supposed to see a doctor here this afternoon to decide what else needs to

be

>done. It's still pretty angry looking, but no more fever.

>

>I guess my greatest fear is that he will turn out to be immune deficient

>also. The ER doctors kept saying that that wasn't possible for a healthy

man

>to suddenly become immune deficient, but after what we went through with

>Katy, I KNOW it can happen. So, it's off to the doctor for us again.

>Hopefully, I can get this doctor to run IgG checks just to relieve my mind.

> He also needs to be re-checked for diabetes, although he has never shown a

>problem before. Apparently cellulitis is common for diabetics.

>

>So, yes, we had a wonderful Christmas. It wasn't exactly as planned --

but

>Katy has taught us to never depend on our planning. We had fun in spite

of

>the generational problems and the health concerns.

>

>Autumn and Tina, I'm still praying daily for both of you. Hang in there.

>Ursula, I'm so glad you found out about the sinus junk -- that's probably

why

>she wasn't behaving earlier. I don't behave too well with sinus gunk.

>

>I've got to start shoveling out from under this pile of laundry. My Bible

>study class is coming over for New Year's Eve, and right now you can barely

>open the front door. We just came in the door and dropped everything.

>

>God bless you all and send you a Happy and Peaceful New Year.

>

>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.

[Guest guest]

Dale,

Congrats to !!! Seems not so long ago we were sitting on the sofa

talking about his college trip... yet it was half a year ago. Yikes! I

know how excited you all must be, and how hard all of you have worked

for this great moment. And it's only the beginning.... Please let him

know I'm so happy for him. Way to go, Mom! I remembered as I read your

message today that I had not responded to your message from a while

ago... I'm sorry about that. I am going to go find it and send a proper

response. The end of the term was crazy (fill you in more on that

later) and I literally get 150+ emails a day. To account for that and

make sure I don't lose any in there, I usually mark the ones to reply to

with a certain color, but my browser conked out a while ago and I lost

some of my " marks. " My apologies.... as soon as I find it, I'll reply

for real.

The experience with sounds frightening. I hope all the testing

comes out okay, and that he continues to improve on the antibiotics. I

have always heard of using IV antibiotics for cellulitis, so please

don't be too disheartened at the slow recovery. I am amazed that they

didn't insist on some IV with things not improving for so long. Please

let him know I am thinking of him, and you are all in my prayers.

And finally (last but not least), good luck (or break a leg, I guess) to

Katy in the auditions. I'm sure she'll be great.

Take care, and have a very Happy New Year!

Love,

[Guest guest]

,

Don't worry your head about the past e-mail. I was just wondering how you

were feeling. But it sounds like is still going strong! Enjoy

what you've got left of break! Yes, I'm concerned about the lack of

progress with 's leg, but it is much improved -- just a long way from

well. Wishing you the very best for the New Year. I pray that you're

schooling will be interesting and stimulating and that you stay on top of the

health issues! God bless you richly in the coming year!

In His service,

Dale

[Guest guest]

Hi Dale,

I hope that gets to feeling better;o)

I bought some Rice Dream last night and I am going to try it with

after he wakes from his nap today. I hope he likes it!!

>From: DaleMWeath@...

>

>from Dale, Mom to Katy, CVID, age 15

>

>, I think you were asking about Rice milk. We use Rice Dream. Katy

>prefers the Original and we get the enriched so that she gets some calcium

>and vitamins just like she would from milk. I like it better than soy

>because it cooks well -- we use it in all our recipes just like milk.

>There's also Mocha Mix ice cream that tastes just like ice cream and Reddi

>Whip has come out with canned whipped cream that is mostly lactose free.

>Katy tolerates it okay.

>

[Guest guest]

Hi-

I am mom to . has a diagnosis of CVID

and congential neutropenia she has a neutrofil count

of less than 200 w/o neupogen. Where they cam e up

with that I am not sure. She is deficient in IgG

Subclass 1 & 4 she didn'tproduce antibodies to DTP or

Hib mumps or tetnus but did to measles. She has low

numbers of T-cells. She is not on IVIG. She is on

amoxilcillin 3 times a day as a preventative. She has

been hospitalized many times. But I think a lot of

that had to do with the neutropenia more than anything

else.

hemotolgist is the one who sent us to an

immunologist, because she believed that needed

IVIG. The immunologist wanted to give the neupogen a

chance before starting the IVIG. Since has been

put on the neupogen she has showed a great

improvement. She isn't as pale has energy. Which is

why I think we do not need the IVIG. Which I am

thankful for. She still gets sick with sinus

infection and skin infections mostly. Not sure I have

helped, but that is our story.

=====

and

(congential neutropenia, hypogammaglobulinemia, chronic sinusitis and

leukopenia)

mom to Evan 6, 4 and Abby Rose 2

__________________________________________________

[Guest guest]

Dale-

That is great that your husband doesn't have any

immune problems. I do have a question for you

though...I am sure the hosp. did a CBC....Reason I am

asking is that a lot of neutropenics are diagnosised

because of an episode of cellulitis.

I hope it continues to slear up.

--- DaleMWeath@... wrote:

> from Dale, Mom to Katy, CVID, age 15

>

> , Katy's IVIG was started because of symptoms

> -- not levels. She had

> tested IgG levels of 400 earlier and they refused to

> start IVIG based on the

> numbers. But, her health was terrible -- chronic

> fatigue, piggy backing

> viruses, terrible digestive problems, etc. Then she

> got an ear infection and

> toe infection that wouldn't go away and after 40

> days of experimenting with

> antibiotics, they started IVIG without checking her

> levels. Other than

> clearing up the infection, we saw no changes for

> about a year. But at the

> one year mark -- it was amazing the difference it

> had made in her quality of

> life. She got her smile back. She's mostly well

> instead of mostly sick.

> And she's able to do a lot more activities. Every

> day is a challenge, but

> that's life.

>

> Her levels are low across the board on IgA, IgD,

> IgE, IgM, and IgG. And they

> keep falling at every 6 month check up. But with

> IVIG we can get her IgG up

> into the 800 level! So she's fairly " safe. "

>

> Hope that helps.

>

> WE've GOT GREAT NEWS! (my husband) is NOT

> immune deficient. His IgG

> was 1300! What a relief. He is also NOT diabetic.

> So, where the

> cellulitis came from -- no one knows. We finish 20

> days of antibiotic today

> and then quit to see if this will go ahead and

> clear -- or flare up again.

> It's not totally gone -- but looks 90% better!

>

> Gotta buy groceries for this crew.

> We're praying for you guys in the trenches --

> Ursula, Debbie and Autumn.

> Keep looking to God for strength. He's got a good

> supply of the supernatural

> stuff you'll need to get through all this.

>

> In His service,

> Dale

>

=====

and

(congential neutropenia, hypogammaglobulinemia, chronic sinusitis and

leukopenia)

mom to Evan 6, 4 and Abby Rose 2

__________________________________________________

[Guest guest]

Dale,

Glad to hear the good news on !!! Thanks for your kind words of

encouragement...it really does help )

Autumn

[Guest guest]

from Dale, Mom to Katy, still 15, CVID

just a rambling comment. After viewing the " Silent Disease " put out by IDF,

Katy and I got to dreaming of doing our own video to present to families who

have just been diagnosed. They would show her dipping chocolates and getting

chocolate all over her infusion lines, etc. and giggling with her nurse who

did her fair share of the dipping! Katy performing shows. Our family

laughing and playing together. Katy performing with her band. There's so

many ways that our kids are just kids. We need to focus on all the good

times. It's so good to hear all of your good news. Hearing that some kids

are going off IVIG. Hearing that they are out building snow men and jumping

on tramps.... let's celebrate. I just read an article writen by a person

with MS. Mr. Farey has this taped to his wall and I like it:

" What will I do with this one, wild, wonderful day of my life? "

Enjoy!

In His service,

Dale

[Guest guest]

Dear Dale,

Wonderful letter, simply wonderful!!!!

Autumn )

[Guest guest]

Annette,

I,too, have this same problem with Wade every morning & it seldom matters

if he goes to bed early or not. His bedtime is 9:00pm & he constantly

reminds me that his bedtime is 30 minutes to an hour earlier than his

friends! My answer to that is that different people's bodies need different

amounts of rest,etc.... Two things have helped with our " morning madness "

recently....we started carpooling for school & the other family does the

mornings & I do the afternoons, so if Wade is late he gets " razzed " by the

other students in the car, at school & by me! Secondly....I started taking

away a priviledge for not cooperating with me in the mornings. I usually

don't take away anything huge & it is lost for the day that the trouble

occurs (ie: no phone calls, in or out, on Tuesday due to mouthyness &

uncooperativeness getting up & ready for school on Tuesday morning). I tell

him what he has lost before he leaves the house for school so that I am

being " fair " by not springing it on him when he gets home from school. I

have only had to do this 2 or 3 times & now we rarely have morning problems

unless it is me who oversleeps! I don't punish him for that. Good luck & I

hope that your mornings get easier! Also, I can tell(as I'm sure you can

also) if Wade is slow & droopy due to illness & that is a different issue.

I have discovered that sometimes Wade will " play the situation " for all

it's worth & that usually does NOT happen when he's sick!!! Pretty

normal,huh?! Alot of this began for us as we entered this WONDERFUL

pre-pubescent stage of 12/13 & girls are usually maturing faster than boys

at this stage, so you may want to entertain that idea with Alissa as well.

Sorry for the novel...hope you can scavenge a little something useful from

all this rambling! Have a GREAT day! The sun is FINALLY shining here in

Michigan today!!

Beth- Mom to WAde, 13yrs. with CVID; GERD post Nissen; Asthma; Chronic

Sinusitis; Neutropenia;IVIG;

At 06:11 AM 2/2/00 MST, you wrote:

>

>

>Thanks Ursula: My brother is suppose to have a copy of the trust and my

>fathers financial statement for me, to air things out. He is going to have

>the banker notify us if he starts spending way out of his league. I have a

>question on my daughter every morning having to fight to get up, she can

>just lay down anywhere and go to sleep. Later in the day she is better but

>the mornings are a battle to brush her teeth and eat her breakfast. Does

>anyone have this with their kids?

>annette and alissa

>

>

>>

>>Reply-To: PedPIDonelist

>>To: <PedPIDonelist>

>>Subject: RE: Hi from Dale

>>Date: Tue, 1 Feb 2000 19:06:47 -0500

>>

>>Annette - the problems that you are facing at the moment regarding your

>>father are by no means stupid. They sound very real and very concerning.

>>Please do not feel afraid to use us as a sounding board for every day

>>issues. It's on of the main reasons I've recently added a Family Issues

>>page to the PedPID site. There are other issues in life than this disease

>>and these can be something that the list can also send support about. I'm

>>actually glad you feel comfortable enough with the members to vent and

>>share

>>feelings. I have no experience in this area but you might also search the

>>internet for Elderlaws. These deal with living wills, estates, trusts, all

>>the issues that are faced by people in their " golden " years.

>>

>>Good luck and I wish I could be of more help.

>>Ursula - & Macey (4 yr old w/CVID) mom

>>

>>

>> Re: Hi from Dale

>>

>>

>>

>>

>>Dear Dale: Sorry to have complained about such a stupid problem, but when

>>they occur, it was overwhelming. That is great you have a date with your

>>son, I hope you both have an enjoyable evening. Hope Katy is doing well

>>and

>>flourishing in the theatre.

>>God Bless,

>>annette and alissa

>>

>>

>

>______________________________________________________

>Get Your Private, Free Email at http://www.hotmail.com

>

>

>---------------------------

[Guest guest]

Hi dale,

I don't have much time anymore to keep up with the emails, but I saw this

one and had to respond. Concerning the red ring rash you were referring

to... had those all over his body and they just kept spreading.

Nothing we did got rid of them (ointments, steroids, creams, lotions,

antibiotics, etc...). Then one day I was feeling lazy when I was giving him

a bath to scrub his hair with the new shampoo we were trying out (he had

them in his hair too {Denorex with conditioner}) I decided to just use it on

his whole body. Then after the bath, I put his Triamcinalone ointment as

usual and then put him to bed after his bottle. The next day, 75% of the

rash was gone. I gave him another bath in the stuff for the next few days

and by the time 4 days past, he was rash free. I don't know if it will help

with the rash you are dealing with, but I just had to tell your about it. I

still use it on his head and body at least once a week to keep the rashing

down because he still rashes out alot.

Hope this helps,

Hi from Dale

>From: DaleMWeath@...

>

>from Dale, Mom to Katy, CVID, age 15

>

>Good morning to all.

>

>Destiny, as far as I know mumps wouldn't cause a spot like that. Katy has

>all kinds of itchy spots most of the time and of every variation and color

>and level of itch! If you suspect chicken pox or something like that

you'd

>better RUN to your nearest pediatrician. Do you know what chicken pox

looks

>like? If it's just what we call an " itchy " we use Hydrocortizone Cream

1%.

>It's over the counter and usually helps with skin stuff. We've got a

>dermatology appointment on the 14th for some red stuff that doesn't itch

but

>it's invading her whole body. Started on the back of her neck and she now

>has 7 or 8 spots of it. It starts looking smaller than a mosquito bite --

>but raised. The largest one now is about 5 inches across and in a raised

>ugly red circle. They all seem to be progressing that direction. She's

NOT

>very happy about the prospect of being covered in this stuff!

>

>, good to hear the report on ! We're praying that you'll be

home

>soon and feeling much better!

>

>Autumn, we're continuing to pray for your boys. Hang in there! (Do you

>have a choice?) God gives us strength, when we have none of our own

left.

>He'll see you through this!

>

>Ursula, This has been a tough winter for you, have you rescheduled your

>surgery? Don't forget to take care of Mommy, too!

>

>God bless each one -- and hopefully send you some sunshine today!

>

>In His service,

>Dale

>

>---------------------------