Hi from Dale

[Guest guest]

Dale - congrats on finding product for the next infusion. Hope everything

goes well.

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

Hi from Dale

From: DaleMWeath@...

from Dale, Mom to Katy, CVID, age 15

, I have no proof, but Katy's levels were first taken at age 13 and

she was low across the board. But each time we check them, they are lower

still. We have checked every 6 months but our new immunologist feels that

we

only need to check once a year now except for IgG.

, I have never hurt so bad or been as sick all over as when I was

having gall bladder attacks. Surgery was such a relief for me! And it

solved a multitude of energy level problems, headaches, naseau, besides the

constant vomiting and diarrhea and PAIN. I'm praying that this will even

take some stress off of those lungs.

Autumn, how are the boys? Are you getting any control over the heart

spasms? We're still praying for some peaceful times in the midst of the

storm. Know that I am praying for your strength as well -- specifically

that your arms will be strengthed for all the work.

Prayers for all. We got Gammimune for Katy's Feb. 5 infusion -- I don't

know whether Coram called Safety Net or not -- they just said they hadn't

received their shipment for other people -- but they had a bottle on the

shelf with Katy's name on it! God provides! And I'm not going to

argue!

In His service,

Dale

In His service,

Dale

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

[Guest guest]

Hi Everyone!

I thought I'd share with you about my son when he came down with the chicken

pox at age 11 months. One knee swelled and he was unable to stand on that

leg. We rushed him to his pediatrician who immediately put him in the

hospital. He was there for 10 days, but no one could figure out what was

wrong with him. Finally, I called Valley Children's Hospital. They had us

bring there and they flew in specialists from S.F. It turned out that

he had the chicken pox, but they were staying inside his system, concentrated

in the knee area. The good news is that they did finally emerge. I just

thought that I should share this with you Ursula, not to scare you, but just

in case. Hope this helps.

Lee

[Guest guest]

Dale - hope things are improving and bravo to for realizing her

limitations. She has a very realistic handle on what this disease can be

pushed to. Was she able to be seen today? Any news? I hope she is feeling

better soon

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

[Guest guest]

Jan,

I live in a suburb of Grand Rapids, Michigan. Not too small of an area, but,

apparently it as far as immune deficiencies go! I am glad I found this list

now, it has helped me understand things and cope with different issues and

even given me an insight on possible future issues and how to deal with them

in an intelligent manner with Kody's doctors. My Batman has had a really,

really good day today. Lots of green snot, but, no fever and he is playing

hard and happily today. His visit to his ortho doc went great, his

knee(osteomyletis) is totally well now and we don't need to see ortho for

this anymore!! We celebrated and went to Long Silver's for lunch, I got

to be Robin( an honor as far as Kody thinks...if he's mad at you then you get

to be Ice Man or Poison Ivy!) and we had a very good time until the lady

behind us started smoking. Immediately Kody started coughing and having an

asthma attack so we packed up our stuff and left. As soon as we were away

from the smoke he was fine.

I got a phone call today from our insurance company. The nurse case worker in

charge of Kody's account. I was scared at first...heard so many horror

stories about insurance companies, but, she wanted to know how he was doing

and told me to call her after he sees the new immunologist next month and she

will arrange for Kody to go the U of M hospital for more testing or Mayo

whichever is best for him. It was a good conversation and she let me know

that if he needs the IVIG, it will be covered. Whew. What a relief!

Diane, and Batman

[Guest guest]

Diane,

My former bat loves Long Silvers too!

I hate fish and so does my daughter, but I buy

it for Ben. Your Kody sure brings back memories

of my little Batman. I remember that on Cable we

found some old Batman reruns from the tv series,

he loved it. It helped for nebulizer treatments and

and he would sometimes drink his ensure without

noticing it while he watched. Ben also has an insurance

case worker. The current one has been real nice and

helpful. We have had some poor ones though that

caused lots of trouble and they change frequently.

One case worker tried to make me (a teacher) monitor

the IV and take it out to save them money. Our doctors

were furious as IVIG needs to be monitored carefully

and the the nurse charge is very small compared to the

gammaglobulin. We cringe when they call, but 2 have been

quite helpful. Sounds like you got a nice one. My daughter

and I have lots of trouble around smokers, I wish no one

smoked!

Jan

TheSchmidtBox@... wrote:

> Jan,

> I live in a suburb of Grand Rapids, Michigan. Not too small of an area, but,

> apparently it as far as immune deficiencies go! I am glad I found this list

> now, it has helped me understand things and cope with different issues and

> even given me an insight on possible future issues and how to deal with them

> in an intelligent manner with Kody's doctors. My Batman has had a really,

> really good day today. Lots of green snot, but, no fever and he is playing

> hard and happily today. His visit to his ortho doc went great, his

> knee(osteomyletis) is totally well now and we don't need to see ortho for

> this anymore!! We celebrated and went to Long Silver's for lunch, I got

> to be Robin( an honor as far as Kody thinks...if he's mad at you then you get

> to be Ice Man or Poison Ivy!) and we had a very good time until the lady

> behind us started smoking. Immediately Kody started coughing and having an

> asthma attack so we packed up our stuff and left. As soon as we were away

> from the smoke he was fine.

>

> I got a phone call today from our insurance company. The nurse case worker in

> charge of Kody's account. I was scared at first...heard so many horror

> stories about insurance companies, but, she wanted to know how he was doing

> and told me to call her after he sees the new immunologist next month and she

> will arrange for Kody to go the U of M hospital for more testing or Mayo

> whichever is best for him. It was a good conversation and she let me know

> that if he needs the IVIG, it will be covered. Whew. What a relief!

>

> Diane, and Batman

>

> 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]

Diane,

We live in Grosse Pointe Park, Michigan, just outside of Detroit. My son,

Wade has CVID, steroid dependent Asthma, GERD,Neutropenia, Chronic

Sinusitis(status post 25 surgeries),etc.... We have been several places for

Immunology & I would tell you NOT to go to University of Michigan. I say

this because we got " tossed out " of there twice because Wade's " numbers

were not low enough for him to be this sick " ...sound familiar?? We saw

Immunology at Children's Hospital in Detroit & were told the same thing,

however now they are very accepting of his diagnosis. We finally got a

diagnosis from a Pediatric Immunologist in Toledo, Dr. Hasan Taki, out of

MCO. He is very good, unfortunately when Wade began breaking through with

multiple infections while on a very high dose of IVIG on a very " close "

schedule(every 2 weeks), it just became too much for him. He was iether

unwilling or unable, or both, to continue to search for reasons for Wade's

sudden but now chronic infection problems. He told me , " None of my other

CVID patients are like this " ...well....maybe Wade isn't truely CVID. That

is basically what we have learned over the last 8 months, but we learned &

are still learning it from Dr. Hostoffer at Rainbow Babies Hospital

in Cleveland. He was & is willing to keep searching & trying & adjusting

until Wade is functioning at the very best quality of life that he can

achieve. Yes, it is a haul for us & yes, sometimes it's difficult to

coordinate everything from a distance but I am a true believer that I was

put on this earth to be " Wade's Mom " & that is my MOST important job & I

WILL do WHATEVER it takes to get the most appropriate & best care for him.

Sometimes that's not so easy but it has always been worthwhile! Even the

doctors that we have " left behind " all helped us to discover yet another

piece of this extremely frustrating puzzle called PID. I guess what I'm

saying is that if I had it all to do again, I'm not sure that I would do

things much differently because I have gained an incredible amount of

knowledge along the way & all of that knowledge just helps me even more

every time i " go to bat " for Wade. Hopefully by writing this to you I can

save you from going down some of the same " dead end " roads that we

traveled, but I also know that as Kody's & Batman's Mom you have to do what

your heart & your gut tell you is right for Kody.... & we are all here to

support you & cheer you on as you embark on that journey.

OK...I'm done preaching now! Sorry! Anyway, if you would like to talk to

someone who is sort of " local " , please feel free to give me a

call()...that's my home office phone, so don't hang up if you

hear the company name, it's a much more dependable voice mail than my home

number. We also do pass through your area on occassion too, so maybe we can

get the boys together. Wade is 13 but he loves younger kids! He's a

terrific babysitter too.

Happy Friday to all the Pumpkins in the patch!! Enjoy the beauty of Spring!

Love,

Beth

At 04:54 PM 5/5/00 EDT, you wrote:

>Jan,

> I live in a suburb of Grand Rapids, Michigan. Not too small of an area,

but,

>apparently it as far as immune deficiencies go! I am glad I found this list

>now, it has helped me understand things and cope with different issues and

>even given me an insight on possible future issues and how to deal with them

>in an intelligent manner with Kody's doctors. My Batman has had a really,

>really good day today. Lots of green snot, but, no fever and he is playing

>hard and happily today. His visit to his ortho doc went great, his

>knee(osteomyletis) is totally well now and we don't need to see ortho for

>this anymore!! We celebrated and went to Long Silver's for lunch, I got

>to be Robin( an honor as far as Kody thinks...if he's mad at you then you

get

>to be Ice Man or Poison Ivy!) and we had a very good time until the lady

>behind us started smoking. Immediately Kody started coughing and having an

>asthma attack so we packed up our stuff and left. As soon as we were away

>from the smoke he was fine.

>

>I got a phone call today from our insurance company. The nurse case worker

in

>charge of Kody's account. I was scared at first...heard so many horror

>stories about insurance companies, but, she wanted to know how he was doing

>and told me to call her after he sees the new immunologist next month and

she

>will arrange for Kody to go the U of M hospital for more testing or Mayo

>whichever is best for him. It was a good conversation and she let me know

>that if he needs the IVIG, it will be covered. Whew. What a relief!

>

>Diane, and Batman

>

>

>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.

>

>

>

Beth Rathburn

Mom to Wade, 13 yrs. with CVID;Asthma,steroid dependent;GERD,post Nissen

Fundoplication & Pylormyotomy;Chronic Sinusitis;Eczema;Neutropenia; ?

Atypical Migraines vs.mild seizure disorder - still under investigation;

etc.....

[Guest guest]

Dear Beth: Our prayers also are with you.. and remember you are not the one

that is wrong in this matter and never loose site of that you and your

husband are wonderful parents... Jesus is truly with you and you know our

phone line is always open to you,

God Bless,

annette and alissa

>From: TheSchmidtBox@...

>Reply-To: PedPIDegroups

>To: PedPIDegroups

>Subject: Re: Hi from Dale

>Date: Tue, 20 Jun 2000 04:42:15 EDT

>

>Beth,

>

>I am still praying for you, especially for Wade. I have asked my church to

>pray for you as well. They have been vigilant in praying for Kody, that we

>will find answers and that he will be well. They were absolutely astounded

>when I mentioned that this can and does happen and they prayed for your

>family right then and there. I can only imagine how hard this is for you.

>My

>heart went out to your husband this Father's Day. I have confidence that

>you

>will get your " sonshine " back soon. How is he doing with all this? I am so

>glad you are allowed at least some visitation now. Poor pumpkin. How is his

>health? I pray that he stays healthy throughout all this without you there

>to

>take care of him and give him that Mommy lovin'. But remember that he

>isn't

>alone, Jesus is ALWAYS with him. Take care, Beth, and keep us posted, we'll

>keep praying!

>

>Diane. Mom to Kody

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

In a message dated 7/15/00 1:47:42 AM Eastern Daylight Time,

tonynmoo@... writes:

<< st-Unsubscribe: <.mailto:PedPID-unsubscribeegroups> >>

[Guest guest]

In a message dated 7/15/00 1:47:42 AM Eastern Daylight Time,

tonynmoo@... writes:

<< st-Unsubscribe: <.mailto:PedPID-unsubscribeegroups> >>

[Guest guest]

Dale - glad to hear you are feeling better. My MIL gets similar headaches

and they take her out of commission sometimes up to 3 or 4 days. She calls

them her " sick " headaches. Congrats to for another year under her

belt.

Ursula Holleman uahollem@...

and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www.pedpid.com

/group/PedPID

[Guest guest]

Dale - I posted a picture on Macey's photo site of her using the Rinoflow.

this was last year so she was 4 yrs old but there's little pain involved

(though she does fuss more of the pressure when she's got an infection).

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

Ursula Holleman uahollem@...

and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www.pedpid.com

/group/PedPID

[Guest guest]

Thanks for the website. I e mailed my ENT to see if they thought would

benefit from it. Appreciate you taking the time to look up the site for me.

le

[Guest guest]

Dale - not sure if you've left out yet but good luck, happy driving and take

lots of pictures. Hope everyone has a great time. Let us know everywhere

you got to see.

Ursula Holleman uahollem@...

and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www.pedpid.com

/group/PedPID

[Guest guest]

Have a GREAT trip seeing the country.

Helen and Matt

[Guest guest]

In a message dated 10/29/00 2:24:50 PM Pacific Standard Time,

dalemweath@... writes:

<< le, sounds like may be in trouble. How

long has it been since you checked trough levels of IgG? >>

Dale,

is better today. The swelling in the knee has gone down. He has not

complained today about it. So we are praying and keeping a close eye on him.

We are two weeks from next IVIG. His levels have not been checked since

first diagnosed. When he was taken off IVIG for a trial run two years ago.

4 weeks out he began to get sick. So DR said need to put him back on. We

did not do a blood work up because it was obvious he needed the IVIG.

How is your daughter doing? We really appreciate you offering your home to

us. So far RMH has been open. We will be back down to Stanford on Nov. 9th

at 10:00 am.

God Bless

le

[Guest guest]

In a message dated 11/7/00 9:57:56 AM Pacific Standard Time,

dalemweath@... writes:

<< le, I was praying for and wondering how the hand is healing.

Is

he back to gym? >>

Hi Dale,

His hand is healing well now. At first it was infected, the doc put on

an antibotic. We see the doc tomorrow to see if the stiches can come out.

He has not been back to the gym. The doctor didn't want him using his hand,

not even for writting. So he is loving school right now has own personal

secretary.

We are heading to Stanford tomorrow. Thank you for your offer to stay in

your home, but Mc House (our home away from home) has room for

us. Again I apreciate your offer. Thank you. s IV is on Thursday at

10:00.

Please pray for . He has had swelling of his knee. Seems to have calmed

down. We are alittle worried as we are going on a cruise that my husbands

family planned then staying an extra week in Florida. The problem is the

dates that can not be changed, puts at 5 weeks between this IVIG in

Dec. We usually are every 3 weeks. He was changed to three weeks due to him

doing so poorly at 4 weeks.

Well thanks for asking about . We are praying for your daughter. We

comp;etely understand the headaches.

le

[Guest guest]

from Dale, Mom to Katy, CVID, age 16

le, It might be worth looking into having your doctor secure a hospital

and IVIG in Florida so that can have IVIG immediately after the cruise

so that he can enjoy that final week. Or at the least, carry your doctors

orders and prescription for the administration of IVIG in case you decide you

need it.

Thanks for your prayers. I'm so far behind on costumes and other

commitments, I know I won't make Stanford this time -- but maybe soon!

In His service,

Dale

[Guest guest]

Helen mom to Matt(CVID)

Gee Dale, can I relate to you. It may be because our kids are in the

adolescent group. I have had such trouble with my mood over that past month.

I am angry about this disease and frustrated with the added factor of trying

to let an adolescent experience and grow - and aware of what that potentially

may mean.

The way I see it is that in order to let him grow and develop it means he

needs to go off to those sleep overs, go out to the movies, do all the things

that a 'normal' kid does. Then what happens...he's exhausted and unable to do

his schoolwork and or his household chores. UGGGGGG. I cannot win for losing.

I am sorry that is not feeling well. It really does seem so unfair

sometimes.

Helen

[Guest guest]

In a message dated 11/8/00 10:16:26 AM Pacific Standard Time,

dalemweath@... writes:

<< le, It might be worth looking into having your doctor secure a

hospital

and IVIG in Florida so that can have IVIG immediately after the cruise

so that he can enjoy that final week. Or at the least, carry your doctors

orders and prescription for the administration of IVIG in case you decide

you

need it. >>

Dale,

Thanks for the suggestions. I had already talked to my Doctor about these

possibilities and he just said 5 weeks would be fine. BUT he doesn't live

with !! After three weeks is sapped of all his energy. That's why

the Doctor changed our schedule from 4 weeks to 3 weeks. I know you can

relate. Im going to be a little more assertive about this and talk to my

doctor again. I want to enjoy his vacation!!!

Thanks again for responding

le

[Guest guest]

Dale,

Great idea!!!!!

Cassie lost her first tooth and was visited by the tooth fairy this week:)

Belinda Rose,

Mom to Allyssa and Cassie, yr. old w/ igg immunodefficiency, asthma, chronic

sinusitis

[Guest guest]

Well, Dale, you caught me off guard....this has not been a good week, but I

REALLY liked your idea and was able to find some good in our present

circumstances. My kids have not been well and while I am not really up to

getting into the details, I will tell you about . As of this morning, he

was on Meningitis precautions....this sent me through a whirlwind of emotions

(especially since we know that Mark has virtually no antibodies to help him

fight such a contagious illness). Well, I am happy to report (OK, this is

the good news part of the day) that as of right now is singing and

keeping me company downstairs (he has to stay away from Mark until tomorrow

morning) and appears quite " normal " to say the least. His neck is still

stiff but the headache and fever are GONE!!!!!!!!!!!

Thanks for keeping us positive, I needed that~

Autumn (Mark Cd5-Cd19 PID)

[Guest guest]

Hi all! It has been a while, but we are all praying for you daily! Building a

house is CRAZY!!

Tucker finally got re-approved (This week) by the insurance to start IVIg

again!! He gets his treatment tomorrow. We took him off in Aug to retest

(which seemed early to me), within a month he had dropped to where we started &

has steadily declined since. He has been on antibiotics for 6 weeks now to keep

his sinuses at bay!

I am glad to hear is doing better!

Thank you all for your e-mails-I haven't posted but have gotten alot from

reading all of them.

Destiny (Tucker 3yo CVID, Kyp 7yo ADHD)

[Guest guest]

Hi Dale!

I love your idea! The good things that happen come in small sweet moments....

like Arianna saying " I love you sissy " as she falls asleep in her car seat

holding her older sibs hand on the way home from the doctor.... or

proudly showing me the permanent ink coloring all over his legs and arms

moments before we leave, and both older sisters looking at me cautiously

before all of us erupt into giggles ... or the lovely scent of freshly bathed

kids being tucked sleepily into bed with sloppy kisses.

There are so many good moments in each day, and they are so easy to loose

when bombarded with illness. Thanks for the reminder!

ben

Mom to Chloe 4, Arianna 2, 1

[Guest guest]

Dale - on our pediatric patients on the floor the ketones spilling

into the urine means dehydration. Dehydration can also cause fatigue

and headaches ( has problems with this). Sounds like the ped has

a good recommendation. Push the fluids and try to get another urine

run mid-week unless the headaches feel worse.

Good luck

Ursula

> from Dale, Mom to Katy, age 16, CVID

>

> I just got an e-mail from Katy's doctor that said her urine showed

Ketones in

> it and that she should be drinking more water. I thought ketosis

was

> something to do with proteins????? Does anyone know what this means

-- when

> I e-mailed the doctor back -- I got the message that she was out of

town for

> a week. My nursing studies were TOOOOOOO long ago! Would that

explain

> her recent headaches and fatigue? Just wondering.

>

> In His service,

> dale

[Guest guest]

Dale,

Thank you so much for your insight & wisdom. God truly uses you in

wonderful ways. You have been such an inspiration to me in more ways

than you will ever imagine.

I look at my child and my hearts sees someone who is not sick, but

happy & healthy. I know that's not always true. When I'm sitting in

the middle of the living room floor holding her mask on for neb

treatments, I feel like that's where I'm supposed to be. I'm not

supposed to be doing housework, watching television, or even doing

something for myself. My worst part of the day is medicine time, yet

I know God has placed me in a unique position to mother this child

and will give me the strength to carry on in difficult times.

I sometimes forget that this illness is part of our lives, not all of

it. It is one stop on our long journey to serve God in the best way

we can. It's easy to let the illness overtake us & push us over the

edge, instead of using it to become stronger. Thank you for

reminding me.

I have grown so much in my relationship with God in the past 2 years,

due in large part to my child's illness. I also have learned a great

deal about myself and how I fit in to the " puzzle " . Granted, someone

keeps taking pieces of the puzzle out when I'm not looking, but God

always seems to find a way to put them back in. Perhaps one day I

can look back & see the complete picture.

Thank you once again for helping me to see what I'm not always

looking for.

Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def.,

asthma, chronic sinusitis, and allergies), and Duncan Avery due

5/17/01