PAM

May 11, 2002

We use hand sanitizer when coming back to the car after being in public places.

I carry wipes with me to wipe down carts and tables at restaurants. For us it's

not only about germs but about food allergies, my son has life threatening

allergies and reacts with contact. People often look at me like I am crazy but

I coudl care less!

Grace 8/97 (IgA def; Specific T-cell deficiency; pneumococcal antibody def;

asthma; allergies)

Caelan 8/99 (Iga def; specific t-cell def; pneumococcal antibody def; asthma;

severe food allergy; Latex allergy; Bactrim, Biaxin, and Pencillin allergy;

Eosinophilic espophagitis, on IVIG)

May 15, 2002

Pam,

Hi. Good job! I highly recommend being firm, yet polite with people who are

near your immune deficient kids. People are just not aware of their impact

on these kids. It is our jobs as parents to be our children's advocates and

protect them from the micro-organisms that don't affect others.

Yes, I definitely carry Purell so that we can clean hands when we're not

near a clean restroom.

,

Mother of (3)- CVID/Hypogammaglobulinemia & IVIG every 2 weeks

_________________________________________________________________

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

May 15, 2002

Thanks for the encouragement. We've only had this semi-diagnosis for 4

months now, so it's hard to know how to react to germs! For example, we are

unsure about putting her in Sunday School next year.

On the down side, the baby turned one this past weekend. In the past 10

days, she has have two separate episodes of fever with no other symptoms.

The fevers go away in a few days. This is how Rebekah started out. I'm

down to nursing just 3 times/day since I went back to work full-time (just

for 2 months) this week. I'm feeling a bit paranoid! I'm nursing less and

now she's getting sick!

Pam

wife to (15 years)

mother to , 8, Hannah, 6, Rebekah, 2, and Leah, 1

RE: Pam

Pam,

Hi. Good job! I highly recommend being firm, yet polite with people who are

near your immune deficient kids. People are just not aware of their impact

on these kids. It is our jobs as parents to be our children's advocates and

protect them from the micro-organisms that don't affect others.

Yes, I definitely carry Purell so that we can clean hands when we're not

near a clean restroom.

,

Mother of (3)- CVID/Hypogammaglobulinemia & IVIG every 2 weeks

_________________________________________________________________

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

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.

June 10, 2002

In a message dated 6/10/2002 10:17:24 PM Eastern Daylight Time,

p_houser37@... writes:

> Did you find out what they settled on? I hope next school year is better

> for you all. Poor Zeb! All he wants to do is go to school.

Hi Pam,

Not yet!! It far from over. They settled on this expedited hearing complaint.

I will let you know when I do.

Charlyne

Mom to Zeb 9 DS/OCD ?

June 22, 2002

In a message dated 6/22/02 11:20:55 AM Pacific Daylight Time,

writes:

> Hi , I was just skimming throught the post. I ahven't read them in a

> while.

>

> I don't know exactly what your problem is right now. Something to do with

> your breast? I had a scare a few weeks ago with my breast also. It turned

> out to be nothing

Pam, it was a mammo I had a week ago, I have to go for bilateral views again,

which they say usually turns out normal, but I'm worried anyway.

Keeping you in my prayers also.

June 22, 2002

In a message dated 6/22/02 11:20:55 AM Pacific Daylight Time,

writes:

> My CT results say I have a hypervascular nodule on the right lobe of the

> liver. 1 cm.

>

> Does anyone know what hypervascular means. Everything I found on it doesn't

> look good.

>

> Anyone in the medical field on here who can help?

>

Pam, vascular, as far as I know, has to do with heart, blood vessels, etc.

Doesn't sound like a tumor or anything like that to me......I'll go look up

some other info.

June 26, 2002

In a message dated 6/26/02 10:06:56 AM Pacific Daylight Time,

writes:

> > I had the test this morning but the radiologist said he wouldn't be able

> to

> > read them till tomorrow

>

YIKES! Another wait? Well, I'm waiting right there with you, Pam....just

gives us longer to add extra prayers, you know?

Hugs,

August 2, 2002

Hi Pam,

If you want Hannan included then she should be. There is always a first for

everything so try it. I feel that it is important to establish routine from

the first day of school. All this switching back and forth is just too

confusing. Our typical children don't get pushed from one room do another and

if they did once school started they wouldn't be too happy. Hannah should be

with her age appropriate peers. If she is supposed to be in 1st grade well

that's where she should be. The only reason I did my own goals was to insure

that Zeb's program paralleled his classmates. I expected the teacher to

actually teach him rather than have him playing a game while the other

children where reading etc. Zeb had a special ed teacher in the classroom

with him in the am for 2 hrs. in first grade. She would work with Zeb and

modify all the classroom lessons. Once she left, Zeb would have a classroom

aide. The special ed teacher would instruct the aide as well as the teacher.

The kids would break up into reading groups and Zeb would be included too. He

read different books but he was still included. If the kids had journal time

Zeb would dictate his journal to the sped teacher. He couldn't write. There

are many ways Hannnah can be included all day. she may not be able to do what

the other kids do but she will be able to do what she can and feel sucessful.

I think that is the key. The law says to the maximum extent possible and the

PPT team must consider a regular classroom first with accomodations before

placing a student in an isolated placement. Did they do that? I do not regret

for a moment having Zeb included. He was and still is the first in this

district. My feeling is that Zeb has the right to be exposed to the same

education as his peers. I have seen the isolated placements in this district

and I don't need a sitter. It depends on where you think Hannah would do best

and if she would be happy with her typical peers. You know your child the

best. has different needs than Hannan so separated them is possible. I

feel that should be able to participate with her typical peers as much

as possible but you know what she is capable of. I wouldn't be concerned with

what the district does it's what and where Hannah would be able to learn.

When I attended the PPT meeting for Zeb at the end of kindergarten and was

told by the district that we don't have the resources to put him in the

regular classroom I said well then you need to get them. They also said he

couldn't make it. The information would be to advanced etc. I told them that

he had his IEP and it would be implemented no matter where. I was prepared

for whatever reason they gave me. I do believe that the district felt I would

take it another step if they disregarded his LRE. It hasn't been an easy

battle but Zeb does have a social life with his classmates. It just depends

what you want for your child. Let us know how you make out.

Charlyne

Mom to Zeb 9 DS/OCD ?

August 18, 2002

Thanks! I think I'm feeling better about all of this now. Okay, a

little better :-)

Rebekah has had several (or maybe just one LOOONG) miagraines since

Tuesday. She didn't eat for 3 days and slept 19 hour on Friday

(third day after infusion). I decided to call our pediatrician who

has been very interested in Rebekah's care. I got the ped nurse on

Saturday and she paged the HEM (who's nose was so out of joint on

Tuesday). I couldn't stop her! So, I started praying for a warmer

reception. Well, was that prayer answered. The HEM called back two

minutes later, knew exactly who Rebekah was and was very concerned

about her. He offered to come in and see her on Saturday even. He

said that, given her serious discomfort post-infusion, we should

consider lowering the dose and doing it more often! Glory be!!

That's exactly the plan we wanted to propose to him but were waiting

to propose until he was in a more receptive mood!!

I don't think I can help you with the pancreas. The doctor looked at

the report in puzzlement and said, out loud, " I wonder why I ordered

that test. Oh, well, her pancreas is fine. "

Pam

August 18, 2002

Kathy,

You have great comments. I lost your phone number or I would have called

you this week. I really needed to cry on someone's shoulder who could

understand.

I'm feeling a bit better about the diagnosis and treatment and port. I

think the port is the right decision for now for Rebekah. I'm not too keen

on starting home infusions right now. I'm just trying to keep the ship

afloat at home. College classes start in just over a week and we are

planning on starting our home school on Monday.

It's great to hear how well someone is doing on IVIG. We are on gammaguard

and she gets 10 grams. The infusion rate was at 75 for most of the

infusion. I hate to say it, but, given the absolute lack of interest and

almost hostility of the HEM here, we decided to do the infusion the same old

way, which always makes her sick, one more time to prove to the HEM that we

needed to try some different approach.

I don't know how the HEM would handle taking the Immuno's orders. The

immuno knows the HEM and didn't think it would go over very well. I'll keep

working on it and praying for the situation. Did I tell you that the immuno

from Minneapolis called the day after the infusion to see how it went

despite not writing the orders? What a sweetie!

Pam

Pam,

This is Kathy from MN. You and I have talked in the past. My son sees the

same immunologist as Rebekah.

Along with the other moms in this group I understand your feelings, and I'm

sorry it is so hard. It really does get better. Here are my comments...

for

what they are worth...

August 19, 2002

Pam, The rate is very high for a 2 year old. We start Lucas at 7 cc and add

only 5 cc every 5 minutes until we get to 40 and then we gradually go to his

max of 65. We have no reactions now. We use to have everything including

fever, vomiting, drop in blood pressure, headaches, joint pain. Before we

start this way we could only go up to 35cc per hour without the symptoms.

Please, Please talk to them about the rate. I will be happy to give you my

doctors # and he can give them his protocol. Most symptoms are rate related.

Lucas is only premedicated with Benadryl and Motrin. We do not even have to

use the Solumedrol any more. I hate to see poor little h have so many

reactions. I know it must be miserable especially since Lucas use to have

them. Lucas also had no to little IgA when we started teh infusions. He does

have IgA now so who knows . Oh yeah ! Lucas weighs 53 lbs and gets 15 gms.

This is a pretty high dose for weight. Dr. Ochs said that 350-500 or baseline

IgG is what you should be striving for at the trough level. So if Lucas is

400 we should be trying to maintain a trough of 350-900. He was 800 and was

continuing to get sick so they went up to the 15gms. I hope this helps.

BARBIE

August 19, 2002

In a message dated Sun, 18 Aug 2002 4:14:31 PM Eastern Standard Time,

pmork@... writes:

> It's great to hear how well someone is doing on IVIG. We are on gammaguard

> and she gets 10 grams. The infusion rate was at 75 for

> most of the

> infusion.

is on Gammune N. In the beggining we statred on Gammuguard but had

several reactions. He tolerates Gammune N. HE is infused at 32 for the first

hour then to 64. Although this last time he had a severe headache afterwards so

they are talking about keeping it at 32.

75 seems fast.....especially if she is having a hard time.

le

August 20, 2002

Morning Carmen ... I just wanted to take a minute to write before I begin my

work day. I am overwhelmed by the wonderful welcome I received this morning,

and look forward to getting to know you as we share and learn. Thank you so

much for your note. I already feel connected, and am actually able to take a

sigh of relief that I can now communicate with others who truly understand.

With gratitude,

Pam

pscarmen@... wrote:Hi Pam,

I am from California also....Palm Springs.... I am sixty-one now and came

down with Stills around your age. There aren't many of us oldies as compared

to all the youngsters in this group. I, too, wonder why I am older than most

to come down with this disease. I went through tons of tests and numerous

doctors before finally, going to Mayo and being correctly diagnosed. It

still took me a quite a few years to believe Mayo as none of my doctors had

heard of it. My Michigan Rheumatologist was the " smartest " and started me on

RA drugs which helped a lot. Right now I take 7.50mgs of Prednisone, 15mgs.

of MTX and twice a week injections of Enbrel. I am feeling pretty good now

but the fatigue is still there and my knees no longer work. There goes my

part time job with the Rockettes..... )

I would definitely speak with your Rheumatologist about Enbrel or Remicade,

or Kineret. They are the " biggie " new drugs and I think they are worth

looking into for you. Prednisone seems to be my best drug but I am trying to

wean off of it since it's so BAD for us.

I've been with this group of " Stilligans " for almost a year now and you can't

imagine all I've learned with the big plus of meeting all these wonderful

folks. We all seem to have a little different symptom or ache or pain but

when we have our flares....they are very similar. We moan and groan with

each other and smile and applaud also. You'll read sad stories and happy

ones.....just join in and vent or brag about things. We listen to everyone

and everything.

You'll find that everyone takes something different and we keep trying to

find that " miracle " medication. Maybe one day................ )

Welcome and we hope to hear from you often.

xxoo

Carmen

August 20, 2002