update

[Guest guest]

Hi Annette,

You and your family have been through a lot!!!! The not knowing is the

hardest part. Hang in there, hopefully you will get some answers soon. We are

all praying for you.

God Bless,

Temme -Dylan 9, and Hunter 7, agamma...

update

Hi everyone,

It's been a long time since I have written, as Annette has been doing so

well. I have written in exasperation over my son and his chronic,

never ending infections, but doctor after doctor has told me that he is

alright immune wise. Well today was like stepping out of the darkness and

seeing a pin hole of light. Someone, an actual doctor, has acknowledge the

severeity of the situation at hand.

History:

has had ear infections since he was 3 months old (breastfeed til 14

months) as well as many other " viral " type infections. He started with the

croup when he was 13 months. He also had a severe cellulitis and bronchitis

before the age of 30 months. At 30 months he was diagnosed with a brain

tumor and underwent surgery, intensive chemo, a stem cell transplant and high

dose radiation (he remains cancer free at this time). Since his cessation of

cancer treatment he has been one gieant infection! He's had the sinus

surgery, cillia biopsies, allergy testing, tubes in his ears (2 sets) adnoids

removed, and tons of immunology workups. Nothing is ever positive.

Flash to present:

In the past 6 months he has had 2 pnemonias (neither required hospitalization

but the second one set him back a lot), bronchitis and a never ending sinus

and Left ear infection. We have just ended 42 days of oral antibiotics (3

different ones). His ear is so infected that the skin around it and the side

of is face are infected as well. He now also has a severe sinus infection

and bronchitis (that is without an x-ray, ausculation only). Out of

desperation for treatment of his ear (has been seen by MANY doctors) I took

him to the oncologist thinking maybe he had developed Leukemia or something

like that. The oncologist took one look at the ear and called in the

immunologist who was likewise impressed. He looked through his chart and

pointed out some " interesting findings " on some of the previous tests that

have been run. Next thing you know phrases like " t-cell " problems and

" leukocyte " deficiencies are being tossed in the air. I am shell shocked, as

these results are 2 years old, and supposedly the doctors (including this

one) had reviewed them. 's response to candida is 1/2 of what is

normal and now the concern is that he has a yeast infection of the sinus and

ear from all of the antibiotics.

Solution:

None right now. We cultured the pus in his ear, but since no one knows what

it is, no one can treat it. If we use IV antibiotics and in fact it is

yeast, then we make things tremendously worse. If we treat for yeast and

it's bacterial, then it may progress to a mastoiditis or worse an abcess in

his brain from the sinus infection. So we are in a holding pattern until the

culture shows us it's real colors. As for the immune studies, they're

repeating them ALL again on June 3rd when he has biannual MRI.

So I anxiously await those tests, the cultures and treatment of this

infection. But on the other hand I am furious that it has gone on this long

when it could have been addressed much earlier in life.

Well that is my vent!

Take care and God Bless all the little Pumpkins on this list.

Mommy to Annette 12 (Selective Antibody Deficiency-IGG 2 and 4, CP,

Developmental Delay, g-tube, HIV+), 6 (Brain tumor survivor, severe

hearing loss, chronic sinus and ear infections, asthma, seizure disorder,

GERD) and Trayvon 3 (Ivemark Syndrome, severe congenital heart defects,

asplenia, situs inversus) All wonderful!!!!!

<A HREF= " http://www.caringbridge.com/ny/my2angels/ " >Click here: CaringBridge -

my2angels</A>

[Guest guest]

,

I'm so glad you finally got an answer for poor . It's been such a

long road for you. I'm also glad someone is investigating his immune system

in more detail.

Autumn has developed resistance to several antibiotics. It's such a scary

thought. Good luck. My prayers are with you.

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (12 months)

[Guest guest]

- Are they thinking MRSA? That's a nasty bugger to fight. Macey is MRSA

positive and still going strong though.

It scares the fool out of the hospital people when she checks in but they just

learn to adapt and glove and gown alittle

better. hee heee. I hope it can be handled with oral meds. When she first

cultured MRSA they did IV Vancomycin and

then oral meds after. I hope things clear with good success.

Ursula Holleman

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

Integration Disorder, Diabetes Insipidus, colonic

inertia)

http://maceyh.home.att.net

/

[Guest guest]

,

I hope that has the easiest one to cure. My thoughts and prayers are

with you as you struggle through this. Let's pray that it's not drug

resistant!

, 's Mommy (3) CVID/Hypogammaglobulinemia

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

,

THAT'S WONDERFUL NEWS THAT BRANDON'S DOING SO MUCH BETTER!!! We all sent

prayers your way (wherever you are!?!) and we'll continue to pray for him

and now for you also.

PLEASE TAKE CARE OF YOURSELF AND RELAX!!!!

All my prayers at this difficult time,

, 's Mommy (3) Hypogammaglobulinemia/CVID

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

Saw the pulmo. doc today.....not very good......'s tracheomalacia he had

at birth is back again....I knew it....he definitely has obstructive

breathing prob's and apnea, however, she's a little doubtful about

somnoplasty....the procedure Leah's daughter had some time ago that also

shrunk the tongue.

Being that has different problems, it was suggested that he have his

tonsils/adenoids removed, but she did put me in touch with an ENT doc who's

heard of the somnoplasty.....I will make appt. to see him and discuss it.

also needs an echo and EKG to make sure this all is not putting undue

strain on his heart!!! Never thought about that, however, because he's

soooooooo hyper, hasn't slowed him down!

I did tell her that my desire was that have whatever procedures done

that are necessary under one " anesthesia " .....dental work, celiac biopsy, and

the apnea corrections....don't know how we can possibly do this, unless it's

months away, as the GI appt. isn't until the end of July...then, we're

talking almost the fall, by the time the doc's can coordinate their

efforts!!!

We'll see, I'm so exhausted even though dh came with me, it was about a 3 hr.

visit, as the doc had an urgent call, her father's in ICU and not doing well!

was bouncing off the walls and ceilings by the time she was able to

examine him!!! Thank God for ......he kept busy, while the doc and

I talked afterwards....he really does have a lot of patience and energy with

.....sure, he gets to go away on business a lot and can " regroup "

often....heehhehe!

Anyway, that's the story....ohhhhhh, gonna get another swallow study done, as

he's gagging, spitting up, and trying to vomit a lot....even though he's not

even eating at the time!

Take care all,

[Guest guest]

In a message dated 6/11/2002 8:16:53 PM Eastern Daylight Time,

Ltb3105@... writes:

> Saw the pulmo. doc today.....not very good......'s tracheomalacia he had

> at birth is back again....I knew it....he definitely has obstructive

> breathing prob's and apnea, however, she's a little doubtful about

> somnoplasty....the procedure Leah's daughter had some time ago that also

> shrunk the tongue.

>

Hi ,

I took Zeb to an ENT last month and he said about the same thing. Zeb does

need his tonsils out and possibly the adenoids. The tonsils are so huge that

they are causing an obstruction. I can't possibly do this before my work

season gets heavy so we are looking at late fall. Zeb doesn't recover well

and I know that I will need to be home and available. Zeb isn't hyper but

seems tired and lacks energy. We both make a good pair LOL. I have my doubts

if I put him through this he will have the same problem anyway. Another

decision.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

sounds like a busy fall for sean coming up, i will keep him in my thoughts

and prayers. shawna.

[Guest guest]

,

Could there be a any possibility that Nettie has yeast in her

esophogus? We recently scoped Jamey and found an overgrowth. Nettie

sounds a lot like Jamey in the GI area. He also suffers from stomach

pain, the runs and reflux. All three problems are chronic. We have

never been able to establish the source. This sounds awful, but

baking soda in warm water works better than mylanta when he seems to

have a lot of discomfort. Luckily he can use proton pump inhibitors,

but he only takes one in the morning.

Jamey needed to put on some weight, but he's going to blow up if he

keeps going at this rate.

Take Care,

[Guest guest]

Lynne - Macey is known to have reactions up to 48 hrs after infusion. Anything

ranging from fatigue to a headache that

puts her in the bed and requires Tylenol w/codeine. The school has an epi pen

and has someone trained to use it if she

reacts in that way while at school the day or two after infusion. We have been

trying to schedule her infusions for

Friday's so that she's at home over the weekend should something happen in those

48 hrs.

I wrote about deleting the former emails when replying. Not knowing if you use

an email program or something with AOL

it would determine how you cut the prior email out. Some email programs have an

option under " Tools " that you check if

you don't want the previous email inserted when replying. Some browser based

email can just allow you to highlight the

old email and cut it from the screen. It really depends on what you're using to

read your email.

Good luck with the port surgery and let us know how the infusion goes.

Ursula Holleman

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

Integration Disorder, Diabetes Insipidus, colonic

inertia)

http://maceyh.home.att.net

/

[Guest guest]

Lynne, I think with aol if you go into your mail preferences you can

change the setting from automatically copying the email you are replying

to just blank page replying. Been awhile since I played on my aol

account but I do remember that it was possible to turn that feature off.

I'll look tomorrow and get back to you on exactly how to do that.

Good luck on the first IVIG thing, the first is the worst I think. After

that you know what to expect. Kody does well with the IVIG, barely any

side effects with him. You can premedicate to try to avoid the migraines

but really you won't know if that is necessary until after the first

one, I would think.

Diane, Mom to Kody

[Guest guest]

Lynne,

Not to alarm you, but better to forewarn you. My 2yo dd had severe

migraines 48 hours AFTER infusion the first time. She became suddenly ill,

vomited several times, lay on the floor crying, " Daddy, my head hurts " over

and over again and then collapsed into a heap. We carried her to a

pediatrician who was covering Saturday hours and were told that it was

probably a migraine, but couldn't possibly be related to an infusion. Other

people have told us that it most definitely WAS an infusion headache.

Whatever it was, it was dramatic and painful. Six months later, my 2yo

suddenly started talking about the time her head hurt so much at Boy Scouts

(we were at a Boy Scouts meeting when it started).

The body aches are very uncomfortable, too. I think we were naive and

believed that if the infusion went well in the office then we were home

free. Both infusions have left Rebekah with headaches and body aches for

several days afterwards. Stay home and keep things quiet and keep the

tylenol handy.

Pam

Mom to 4

Rebekah with CVID??

update

Hello to all, this is Lynne,

The doctors moved up Sis' surgery to put the port a cath in to tommorow.

Friday when they did her spirametry, it was low, so they wanted to get the

surgery done ASAP. They will start the IVIG treatments on Thursday. So

please everyone pray that all will go well. The doctor said she will be

prone to migraines, because I have them. They assured me all the side

effects will happen at the office. They said side effects at home should

only be achiness, joint pain. If anyone can give me any insight on what to

expect tommorow when we come home from the hospital, it would be greatly

appreciated.

I'm going to try not to email anymore replying to someone, other than to

start a new email. I don't remember whom it was that wrote to delete the

old

messages, so that those with limited time on the net wouldn't spend all

their

time downloading the messages. I don't know how to delete the old message.

Thank you.

Lynne

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]

Hi Pam, From what I have known headaches are very rate related. My son at 6

gets 15 grams every 3 weeks. We start out at 7 cc and then add only4cc per 5

minutes for the first hour and then add 10cc every 15 minutes until be reach

his max of 65cc per hour. They are very careful to listen to what happened

after the infusion. Headaches and body aches are in my docs account related

to rate and rapid increases. We have cut out all reactions by falling this

protocol. He explained to me that the cells have to cross from the blood to

the brain and when they do too fast cell fragments can break off and cause

headaches. I know we have been very happy with our situation. It is hard to

get them to go slow especially if they have several patients. We just set a

timer and they come back. We also premedicate with Benadryl and Motrin.

Just some thoughts. BARBIE

[Guest guest]

We premedicate with benedyrl, tylenol and steroids and I think that they

start at a higher rate than 7cc. I'll have to check that out. They are

learning to reserve the room for the day for us. The last infusion ran 6

hours! But, after they got the needle in, they had to wait 1.5 hours for

the medicine to dissolve! So, we were there 8 hours and 21 minutes (but

who's counting)! I have three other kids that come along, too. Put it this

way, we are a very, VERY noticeable group!

Pam

Re: update

Hi Pam, From what I have known headaches are very rate related. My son at 6

gets 15 grams every 3 weeks. We start out at 7 cc and then add only4cc per

5

minutes for the first hour and then add 10cc every 15 minutes until be reach

[Guest guest]

Hi ,

Sounds like a busy schedule. I'm sure you will do just fine, as always.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

thanks, I hope so also

--- charlyne1121@... wrote:

> Hi ,

> Sounds like a busy schedule. I'm sure you will do

> just fine, as always.

> Charlyne

> Mom to Zeb 9 DS/OCD ?

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

In a message dated 8/15/02 9:58:49 AM Eastern Daylight Time,

mashawnag@... writes:

> who isnt,lol well natha turned a year

> older on the 8th, had a very nice lillte just just

> family party, firts one like this and it was great!!

> pizza delivery, cake and presents, oh and the biggie,

> nathan's little cousin (im an aunt) born on the same

> night little malachi

Oh Happy Belated B-day to !!!!!! And congratulations a on your

new nephew. Malachy (I believe that's how it's spelled....it was a

characted in the book 's Ashes) is a very Irish name. Sounds like

lots of fun was had!!!!

Good luck at the meeting and let us know how you made out.

Donna

[Guest guest]

Prayers coming your way and I hope everything goes well at the meeting.

Pam

mashawnag wrote:hey guys, i know i havent bee up to date often ut busy

busy busy,lol who isnt,lol well natha turned a year

older on the 8th, had a very nice lillte just just

family party, firts one like this and it was great!!

pizza delivery, cake and presents, oh and the biggie,

nathan's little cousin (im an aunt) born on the same

night little malachi (sp?) so now he gets to share

his birthday. went to the fly in breakfast, brother

and dad rod in an airplane and nathan had some

pancakes and sausages, been paracticing his trumpet

pretty good, we have an iep meeting this afternno, im

not real eager to go to, im actaully a little nervous,

have some harping to do at the school, cant change it

to a lter date, school starts here o the 21st, less

then a week away, was hard enough to get scheduled for

today. pray it goes well shawna.

=====

shawna

__________________________________________________

[Guest guest]

the IEP meeting went welll!!! they agreed my request

were resonable and realistic. A full new reading

program with a minimum of 1 spelling word/meaning per

week. they apologized about the delay and screw up in

the augmentive comm. and agreed to put the steps in

IEP so next time will be in big trouble not only by

me. Gets to start 5th grade band in sept. with the

others, but cant make any goals in the IEP do to being

an elective which is ok, he takes summer private

lessons from same teacher. they loved the ID billfold

idea, and we discussed wehater or not some of the

specials are appropriate as of yet for him, daddy and

i are concerned, are adding time to his pic/word

schedule and he is to be refered to look at his watch

each time he asks about subjects. Then we changed

around a few sensory integreation times but these are

workable and changed lunch too since the lunch room is

soo loud and he cant really talk to any of his

classmates( which all dearly love him) they are going

(with my approval as long as there are ones to come)

have his classmate sign up to eat lunch with him in

his room so they can talk what ever 5th graders talk

about lol with nathan. Do have a funny the principal

said he really missed nathan over the summer cause

during the school year natha loads the pop machine as

part of his SI and the principal had to do it for the

first time this summer and took him for ever to figure

out,and he still has a hard time i guees,lol, he was

like nathan where are you? lol. all in all it went

pretty good we will have a few quick meetings to go

over aug comm with Ass tech, and OT about dropping

handwiriting with out tears been doing for several

years with no gains at all, maybe do hand strengthing

exercises and maybe try a spling he acts like he cant

hang onto any writing utensils. i could go on more but

will stop at it went well. shawna.

--- duffey48@... wrote:

> In a message dated 8/15/02 9:58:49 AM Eastern

> Daylight Time,

> mashawnag@... writes:

>

>

> > who isnt,lol well natha turned a year

> > older on the 8th, had a very nice lillte just just

> > family party, firts one like this and it was

> great!!

> > pizza delivery, cake and presents, oh and the

> biggie,

> > nathan's little cousin (im an aunt) born on the

> same

> > night little malachi

>

> Oh Happy Belated B-day to !!!!!! And

> congratulations a on your

> new nephew. Malachy (I believe that's how it's

> spelled....it was a

> characted in the book 's Ashes) is a very

> Irish name. Sounds like

> lots of fun was had!!!!

> Good luck at the meeting and let us know how you

> made out.

> Donna

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

[Guest guest]

In a message dated 8/18/02 9:41:58 PM Eastern Daylight Time,

mashawnag@... writes:

> lol. all in all it went

> pretty good we will have a few quick meetings to go

> over aug comm with Ass tech, and OT about dropping

> handwiriting with out tears been doing for several

> years with no gains at all, maybe do hand strengthing

> exercises and maybe try a spling he acts like he cant

> hang onto any writing utensils. i could go on more but

> will stop at it went well. shawna.

>

a, Congrats on IEP. My son has big time OT problems with writing. Have

they tried writing out loud software. Alphasmart keyboards and Type to Learn?

Also, OT over summer gave Danny a tiny squish ball to hold with last to digit

fingers while he is writing. We just started and it seems to help.

Diane (mom to Rochelle-6 ds/asd and Danny-8 ld/asd)

[Guest guest]

In a message dated 8/18/02 9:42:47 PM Eastern Daylight Time,

mashawnag@... writes:

> and changed lunch too since the lunch room is

> soo loud and he cant really talk to any of his

> classmates( which all dearly love him) they are going

> (with my approval as long as there are ones to come)

> have his classmate sign up to eat lunch with him in

> his room so they can talk what ever 5th graders talk

> about lol with nathan

a, that's so cool!!! I think that's a great idea. It took us an

entire year to get Maddie into a classroom, and we started by bringing one

child at a time to her....same idea. Am so glad it went well!! Congrats!!

Donna

[Guest guest]

thats a good idea, i do beleive we are giong to work

on actual splints or something to hold to see if any

gainable difference. will most likely never be

a writer, but he can type very well peck style but it

gets the job done,. ANd we will keep trying--go to

UIHC this October for all h is yearly will discuss

again with his OT there, they hlep out the school

lots. shawna.

--- dben937342@... wrote:

> In a message dated 8/18/02 9:41:58 PM Eastern

> Daylight Time,

> mashawnag@... writes:

>

>

> > lol. all in all it went

> > pretty good we will have a few quick meetings to

> go

> > over aug comm with Ass tech, and OT about dropping

> > handwiriting with out tears been doing for several

> > years with no gains at all, maybe do hand

> strengthing

> > exercises and maybe try a spling he acts like he

> cant

> > hang onto any writing utensils. i could go on more

> but

> > will stop at it went well. shawna.

> >

>

> a, Congrats on IEP. My son has big time OT

> problems with writing. Have

> they tried writing out loud software. Alphasmart

> keyboards and Type to Learn?

> Also, OT over summer gave Danny a tiny squish ball

> to hold with last to digit

> fingers while he is writing. We just started and it

> seems to help.

> Diane (mom to Rochelle-6 ds/asd and Danny-8 ld/asd)

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

[Guest guest]

-, hey, glad to hear the update! This sounds perfect and so

glad things are working out for you, take good care, Dawn, s mom

-- In @y..., <rebecca81r@y...> wrote:

>

> Hi all,

>

> I finished my first week of classes. My classes are

> great, nothing can be better. Actully yeaah it can,

> that one of the classes can be more interesting but

> it's cool. . My nanny job that's 3 weekdays is going

> great. The children are absoutly precious along with

> their parents. I just am loving every minute of it.

> Besides that, I'm gonna help in an elementry school

> for a few hours once a week.

>

> So besides that I can stay up till around midnight

> and sleep in ( I usually sleep in till 10 a.m). I can

> relax in the morning before I have the afternoon's

> full/ except one day it will be extremly busy. . I'm

> already doing schoolwork almost every evening that I'm

> not too tired or busy. .

>

> Well hope y'all are doing wonderful. Hope your

> children are liking the school yeaer, and you and your

> family, jobs are doing wonderful. Well that's my

> update; which I'll try to e-mail once a month. I'm

> still using aol im: which mine is 81r.

>

> Sincerely,

>

>

> __________________________________________________

>

[Guest guest]

In a message dated 9/1/02 11:13:33 PM Eastern Daylight Time,

rebecca81r@... writes:

> My nanny job that's 3 weekdays is going

> great. The children are absoutly precious along with

> their parents. I just am loving every minute of it.

> Besides that, I'm gonna help in an elementry school

> for a few hours once a week.

>

>

Wow ; sure sounds like you're busy. I'm glad things are going well

for you!!!

Donna

[Guest guest]

Dear ,

So very sorry to read that the last Epidural didn't

" take " like the first one did. You are probably

correct that it didn't go into the right spot.

Oh , I pray the next one does. It makes

all the difference in the world as to how you feel.

You are such a loving, caring young woman, and

you are always thinking of others, also working at

a full time job all this time with little or no relief

most of the time...something very good just has

to happen soon! The Kineret could be the med,

that makes this all possible. I will be very interested

to hear your experience with that. Please do keep

us posted.

Love & hugs dear friend!

~~tricia~~

-- Update

Hello Everyone,

I just wanted to give all of you a little update on myself. I have been

quite fatigued. I had another Epidural Injection on the 5th. For some

reason it isn't working very well. I almost think that I wasn't injected in

the right spot. The Doc tried twice to give me the injection in the right

spot. I don't know for sure.

I am sure it didn't help that I probably was doing to much. I am not

suppose to lift hardly anything, etc... I just couldn't help myself my back

felt so wonderful. I am going to have the third injection and see what

happens. It was quite a let down for me when the second injection didn't

help like the first one. Maybe the third time will be a charm.

I have officially decided to try the Kineret next month. I am hoping this

med will be the magic cocktail so to speak. So wish me luck. I really need

to start feeling better then I do. I feel that my quality of life needs to

improve. I have so many things I would like to do and I feel trapped by my

uncooperative body. I just don't seem to be getting better.

I know I certainly could be worse. I am still working, I am not in

wheelchair yet and I can take care of myself. I can't stand or walk to long

or bend and lift very much. I am so tired and over all I just don't feel

well. I have to sit down when I brush my teeth because after standing for

10-15 minutes I am in so much pain. This not being able to walk and stand

for very long is limiting what I can and can not do. I guess I have done

enough complaining for now.

Thanks for listening it really helps me to feel better and process and work

out my issues. I wish everyone the best.

Love,

jatw@...