Re: update on Lucas

May 29, 2002

Hi guys ! Well, we just got home from the hospital. We admitted Lucas

because his temp would not come down. He was between 104 and 105 for 5 days

even with advil as well as we were doing neb treatments around the clock. I

needed to be able to be mom not nurse. It seems there is a rotten virus going

around that hits the trachea. He still has a fever today but after fluids

and CBC and blood culture I feel better about the course of where we are

going. His CBC showed that it was probably viral. His WBCs went down to 3.2

and he was leukopenic, neutopenic, and his total ANC was only 1200.

A little scary but it very interesting how the Peds seem to be much more

nonchalant about it than our Immuno (GOD BLESS HIM) . He wanted to know why

they did not give him some IV antx. He said that with his PID that would be

the first course of treatment even if it was viral . A prolonged temp 5days

(104+) is tricky to make sure that nothing else is going on. Lucas was also

up coughing all night so no sleep for the weary. The immuno also gave him

some Guifinisin and Codeine to help him rest his cough and keep things thin.

WE were talking about stretching out his IVs this summer but they are not

willing to because we have had a fever or something every 3 weeks on the last

week before his infusion. Oh well I thought he might outgrow this but does

not seem to be the outcome at 6 anyway.

Almost through another one. I sure appreciate knowing that you are all there.

BARBIE Lucas (hypogamm, selective antibody def. asthma, bipolar etc. IVIg q 3

weeks.

May 30, 2002

Barbie:

I just now got back to your post (have over 200 e-mails to catch up on --

right!) and am glad Lucas is out of the hospital. I can't believe with those

fevers they didn't just go ahead and give abx -- that's our immuno's standard

protocol " just in case " . I know you don't want regular kids to do that all

the time and we worry about antibiotic resistance, but the risk of missing

something big is just too important with these kids.

I hope he continues to improve, and that YOU get some rest, too.

(mom to , age 3. Polysaccharide antibody def)

September 3, 2002

Welcome to everyone new! Hope you have as great support as we have this is a

wonderful group of moms who are extremely supportive and caring for each

other. I often lurk. (DAILY) but get time rarely to write.

Well, we have been very busy as I know most of you have been also. Lucas

started 1st grade today, he returned to the small private school that we had

to switch him to last spring when he was totally overwhelmed by the school

and class size in the public school. Not only was he frequently sick even on

IVIg but he was not tolerating the intensity of school. ( 26 kids in

kindergarten class) and about 500 in the recess and cafeteria. I think I

wrote after several years of research and evaluations and looking at his

birth parents history we believe he has a mood disorder that probably is

bipolar. We have been taking him to counseling weekly since May and today

was a wonderful success. Better than I could have ever dreamed. He had a

good day and only cried once per the teacher. ( Remember he was having daily

tantrums and panic attacks with the mention of school even after starting his

new school in the spring. ) He is tired (he says he had a hard day and wants

to eat and eat and eat this afternoon.)but there are only 10 kids in his

class and a wonderful young pretty teacher that he seems to like very much.

Well, on to the not so good news. We have wondered for a while if there

were any Tcell problems or what else was not quite right. Because of the IDF

retreat we asked again about some other studies and found that they had not

been done. What came back is that his overall B cell count is low and that

Cd19 has some kind of error. The other interesting thing is that he had

antigens to Tetanus but none to Candidis which now explains why he has yeast

infections on his penis chronically. So does anyone know anything about Cd19

and Cd5 issues? I remember someone mentioning it one time but do not know

how they are related. His other titers are questionable since he is on IVIg.

We are not sure if they are passive or active antibody levels.

Our immunologist told us that he believes Lucas is CVID and probably will not

get off of the IVIg. He said that we are the first kid that he has had that

could not come off at about 5 or 6. Lucas is almost 7 and definantly even if

we have not had serious infections the chronicity is persistent even on IVIg.

He had pneumonia once last year and a new virus atleast once a month which

always triggers his asthma. Going up on his dose to 15 gms did make some

difference but did not keep the infections away. He is so much better than

he was younger that I have little to complain about. I do k now that he

keeps me on my toes to keep him from getting a serious infection.

I got to meet Beth when she came to Seattle last weekend. She called me

after I emailed her my info. We had a IDF regional meeting and they gave us

tickets to the Mariners game in the nosebleed area. Interesting we could not

stop talking the entire time. Wade is such a sweetie both Lucas and

fell in love with him. They cannot wait to see him again in DC next year. I

am amazed how everything that I have seen or been apart of with IDF has been

phenomenal. ( I know I can be hard to please) The funny thing is that Beth

and I have the same Birthday not only day and month but year. Amazing, I have

never met anyone in my entire life that has my birthday much less the same

year. I just want to thank each of you for being there. I do not come to

this group as a professional and it is so wonderful to know that we are all

moms doing the best we can for our kids. I find it so refreshing to not have

to " know it all. " I get put in so many situations that are very stressful

because I am a pediatric nurse and I should know the answers to many of the

medical questions. I know our immuno said to me the other day when I said

that I had most of the results but was not sure how to interpret some of

them. He said " I am sure glad that I am still useful for something " because

he believes that we have a grasp on everything. ( He is very humble) It is

amazing when you are a parent how sometimes you just want the " professional "

to take care of you. I know that I could not let go that much with what I

know about health care.

So I have gone on and on. I appreciate your ears. My staff and family do

not understand what I am talking about so I am glad to atleast be able to

talk about it. Barbie (Lucas 6, IVIg now officially CVID,

dysgammaglobulinemia, SID, Bipolar asthma, GI stuff etc. and my sweet little

1st grader who I am very proud of)

September 3, 2002

Hi Ursula, I have missed hearing from you . How is school going? How much

longer do you have? I remember how hectic it was even when I was single. I

can only imagine with a family.

I did not find anything witht he site you gave me. I do know that cd19 has

to do with B cells and lymphocyte productions. but I am no t sure how it

relates to cd5. Fortunatly our immuno here has been very involved with Dr.

Ochs and Sweetzer here in Seattle so I expect if there is any further concern

we will be getting more info. The interesting thing is how both of the

seizure meds ( we were using them as mood stabilizers) just completely

whacked out his system. I know our immuno is contacting Dr. Ochs regarding

the use of Lithium because neither of us is willing to take the risk after

two disasters. If you are in touch with Autumn I would love to get a little

more info . We have not heard from her in such a long time. Is Mark doing

OK? Lucas is only six now so I would like to see what might be in the

horizon. It has been suggested that we see if we can get some cord blood

stems cells if the birth parents have another child. It might make a

difference in the future. Thanks again for all of your work on this site. It

has been our lifeline. BARBIE

September 3, 2002

Barbie - Autumn's son Mark has a problem with CD5/CD19. go to this page for

more info about the defect

http://www.scid.net/cd5cd19pid/

Hope this helps.

Ursula Holleman

Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

February 17, 2003

,

Thanks for a great update! It sounds like Lucas is well on his way to

a rounder head! YAH!!! Bill sounds like a really good ortho. It's

really not too bad having an older baby in a band. will be

19mths on the 27th and was just put into another band. It doesn't

bother her at all. She doens't even try to open it or take it off.

That was a really big concern of mine. But nope, she's doing really

well with it. Her flat spot is just about gone. We're trying to get

her ears a little more aligned.

Please keep us posted on Lucas.

> We took Lucas to the orthotist on Thursday. Bill asked how things

were going and I explained about his being out of the helmet for a

week etc. He wanted to know if he had been sick........I explained

about Caleb. I told him that there were red spots and that didn't not

go away within two hours. Bill was so pleased he got tears in his

eyes, he said you don't know how long I have been waiting to hear you

say that. He said that he could tell Lucas had grown, everywhere.

Bill thought he was just bigger, longer, etc, etc. He could tell

where he had grown in the helmet. He felt Lucas head and thought that

there was definite rounding and it was no longer flat like a board.

He agreed to keep Lucas in it for an extended period of time, maybe

till 18 mths. Needless to say I was thrilled with the report.

> I must admit after having him out of it for a week I did not want

to put it back on him. I liked seeing his little head and kissing it.

It was nice to be able to hold him and not be bonked in the face with

his helmet.

>

> in SW Missouri

> Caleb 2 1/2 and Lucas 1 year (starbanded 1st time 8/26/2 and banded

2nd time on 12/12/2)

February 17, 2003

-

That is such great news! After such a crazy week I'm sure that was

just what you needed to hear! Hooray Lucas!

Dane's mom DOC Grad

February 17, 2003

Oh !!!!

HOORAY at long long last I'm so happy his stubborn little head is

finally rounding out some! I knew when you said the red spots weren't

going away he had to be growing and rounding out! Bill sure sounds

great - I can imagine how happy you all are, you've waited a long &

frustrating time for this. Hooray!

I know when we were between Abby's STAR & DOCband we had a 2 -3 wk

break from any band I was so ready to call it quits then. I enjoyed

seeing Abby band free for a bit, but of course, it was well worth

putting a new band on her at that point.

Keep the good news coming - yay Lucas!!

How's Caleb feeling ?

Debbie Abby's mom DOCGrad

MI

>

> > We took Lucas to the orthotist on Thursday. Bill asked how things

> were going and I explained about his being out of the helmet for a

> week etc. He wanted to know if he had been sick........I explained

> about Caleb. I told him that there were red spots and that didn't not

> go away within two hours. Bill was so pleased he got tears in his

> eyes, he said you don't know how long I have been waiting to hear you

> say that. He said that he could tell Lucas had grown, everywhere.

> Bill thought he was just bigger, longer, etc, etc. He could tell

> where he had grown in the helmet. He felt Lucas head and thought that

> there was definite rounding and it was no longer flat like a board.

> He agreed to keep Lucas in it for an extended period of time, maybe

> till 18 mths. Needless to say I was thrilled with the report.

> > I must admit after having him out of it for a week I did not want

> to put it back on him. I liked seeing his little head and kissing it.

> It was nice to be able to hold him and not be bonked in the face with

> his helmet.

> >

> > in SW Missouri

> > Caleb 2 1/2 and Lucas 1 year (starbanded 1st time 8/26/2 and banded

> 2nd time on 12/12/2)

February 25, 2003

Well we are heading to the hospital for a good look in his sinuses, remove

his regrown adenoids and cauterize his nose. He is a monster right now

because he cannot eat but this too will pass. Wish us luck!! BARBIE ( Lucas,

7, CVID, IVIg, Bipolar)

February 25, 2003

Barbie,

You and Lucas will be in my thoughts and prayers. Please let us know how

it goes.

Sandi, 's Mom

February 25, 2003

Barbie,

Extra prayers coming your way.

Prayers and hugs

Sharon

s mom

Re: Update on Lucas

because he cannot eat but this too will pass. Wish us luck!! BARBIE ( Lucas,

7, CVID, IVIg, Bipolar)

February 25, 2003

> Well we are heading to the hospital for a good look in his sinuses,

remove

> his regrown adenoids and cauterize his nose. He is a monster right

now

> because he cannot eat but this too will pass. Wish us luck!! BARBIE

( Lucas,

> 7, CVID, IVIg, Bipolar)

>

February 25, 2003

Barbie,

I'm so sorry to hear about Lucas heading back to the hospital. I hope

everything goes well. Let us know how he's doing as soon as you can.

Ray, mother to Tabitha (age 7), Autumn, age 5 (IgG def., asthma, chronic

sinusitis, and allergies), and Duncan (21 months)

February 28, 2003

Thanks for asking Wenoka, Lucas slept 15 hours last night and after about a 2

hour delay we got him to go to school for part of the day today. His infusion

is next week so this is also his fatigue week. He is still very stuffy after

the cautery but I think we are going to get better. Or atleast I believe we

will. He seems less volatile tonight. BARBIE

February 28, 2003

Barbie,

So how is Lucas doing?

Wenoka

At 10:58 AM 02/25/2003 EST, you wrote:

>Well we are heading to the hospital for a good look in his sinuses, remove

>his regrown adenoids and cauterize his nose. He is a monster right now

>because he cannot eat but this too will pass. Wish us luck!! BARBIE ( Lucas,

>7, CVID, IVIg, Bipolar)

January 28, 2009

Well we spent the evening in the ER again. Lucas had a stomach virus about 2

weeks ago and ran a fever of 102 and vomiting and diarreah. He was better in

about 48 hrs. Well last night it started all over again but this time his temp

was 104 so I called his immunologist and they sent us to the ER for a work up.

He was moderately dehydrated with some electrolyte shifts but looks viral again

from what he said. They are so weird here. I cannot get anyone to give me his

labs or even talk to me about them. It is like they are hush hush . Anyway they

told me that I can come back and sign for them tomorrow since med records was

closed. " HUH " His temp did finally come down after motrin again but I am

wondering because he still has FOUL stools and liquid and the doctor said he did

not want to culture them unless they were bloody. I am just wondering why they

would not culture them since this has been going on for 2 weeks. ( he said it

had gotten better but did not

go away.) What is the likely hood we have 2 stomach flus in 2 weeks?? Just want

some input from wise parents. The only thing that tells me the first time might

have been a virus is that my daughter and grandbaby also got it. But if it was

something else they could have gotten it also couldnt they??? Would love some

input. I had to drive back home on icy roads so a busy scary night for us

here.BARBIE

________________________________

From: Ursula Holleman <uahollem@...>

Sent: Wednesday, January 28, 2009 7:33:28 PM

Subject: RE: Re: Make a wish

With Macey's diagnosis it's alternated between the two. Les's diagnosis is more

chronic. I've never heard of a teen and youth panel. When was that made?

Ursula Holleman

mom to (16) and Macey (13)

www.caringbridge. org/visit/ maceyholleman

groups (DOT) comFrom: clevelandfather@ earthlink. netDate: Thu, 29

Jan 2009 01:00:09 +0000Subject: Re: Make a wish

Hi, I'm new here and probably shouldn't be asking this question, butis the

consensus here that PIDD's are a serious chronic disease or arethey a

life-threatening medical condition? A little about me, I was diagnosed with CVID

in the early 80's and wasa subject in the original FDA studies for IViG. I have

two teenagerswith CVID, one is a college sophomore at a community college where

heis president of Student government. The other a high school senior whohas

chosen to deferring her acceptance at an Ivy League school tospend a year as a

volunteer in the City Year program, tutoringelementary school kinds in intercity

Boston school. Both infuseGamunex every 4 weeks. We live in the Cleveland Ohio

area. My son is on the IDF teen and youth panel for and I am an IDF

peervolunteer. My daughter wants nothing to do with the IDF.

January 29, 2009

---

Maybe he has eaten something with the salmonella causing outbreaks in it?

valarie

mom to 3 w/cvid

In , Barbara Jimenez <mother5590@...> wrote:

>

> Well we spent the evening in the ER again. Lucas had a stomach virus

about 2 weeks ago and ran a fever of 102 and vomiting and diarreah. He

was better in about 48 hrs. Well last night it started all over again

but this time his temp was 104 so I called his immunologist and they

sent us to the ER for a work up. He was moderately dehydrated with

some electrolyte shifts but looks viral again from what he said. They

are so weird here. I cannot get anyone to give me his labs or even

talk to me about them. It is like they are hush hush . Anyway they

told me that I can come back and sign for them tomorrow since med

records was closed. " HUH " His temp did finally come down after motrin

again but I am wondering because he still has FOUL stools and liquid

and the doctor said he did not want to culture them unless they were

bloody. I am just wondering why they would not culture them since this

has been going on for 2 weeks. ( he said it had gotten better but did not

> go away.) What is the likely hood we have 2 stomach flus in 2

weeks?? Just want some input from wise parents. The only thing that

tells me the first time might have been a virus is that my daughter

and grandbaby also got it. But if it was something else they could

have gotten it also couldnt they??? Would love some input. I had to

drive back home on icy roads so a busy scary night for us here.BARBIE

>

> ________________________________

> From: Ursula Holleman <uahollem@...>

>

> Sent: Wednesday, January 28, 2009 7:33:28 PM

> Subject: RE: Re: Make a wish

>

> With Macey's diagnosis it's alternated between the two. Les's

diagnosis is more chronic. I've never heard of a teen and youth

panel. When was that made?

> Ursula Holleman

> mom to (16) and Macey (13)

> www.caringbridge. org/visit/ maceyholleman

>

> groups (DOT) comFrom: clevelandfather@ earthlink.

netDate: Thu, 29 Jan 2009 01:00:09 +0000Subject: Re: Make a wish

>

> Hi, I'm new here and probably shouldn't be asking this question,

butis the consensus here that PIDD's are a serious chronic disease or

arethey a life-threatening medical condition? A little about me, I was

diagnosed with CVID in the early 80's and wasa subject in the original

FDA studies for IViG. I have two teenagerswith CVID, one is a college

sophomore at a community college where heis president of Student

government. The other a high school senior whohas chosen to deferring

her acceptance at an Ivy League school tospend a year as a volunteer

in the City Year program, tutoringelementary school kinds in intercity

Boston school. Both infuseGamunex every 4 weeks. We live in the

Cleveland Ohio area. My son is on the IDF teen and youth panel for and

I am an IDF peervolunteer. My daughter wants nothing to do with the IDF.

>

January 29, 2009

That is why I wanted to have them do a culture. I even went out to ask again and

he told me that unless he had blood in his stools he was not going to culture. I

do not know. but we will get a culture if it continues much longer.

BARBIE

________________________________

From: osdbmom <osdbmom@...>

Sent: Thursday, January 29, 2009 11:29:09 AM

Subject: Re: update on Lucas

---

Maybe he has eaten something with the salmonella causing outbreaks in it?

valarie

mom to 3 w/cvid

In groups (DOT) com, Barbara Jimenez <mother5590@ ...> wrote: