Re: CT results & tomorrows infusion

[Guest guest]

Urusla,

It is highly unlikely that Macey has had " continuous " atelectasis since 18

months old that never went away. Atelectasis is a partially collapsed lung.

When Asthma is the culprit, it usually is due to the amount of thick mucous

in the lungs being " sticky " and pulling the lung in, thus partially

collapsing it. Atelectasis causes constant coughing and most certainly it

would have been seen on x-rays between the ages of 18 months to the present.

It resolves on its own with chest PT (often times requiring steriods to help

the inflammation component of asthma and other asthma meds) but once you have

it you are more susceptible to it again and again with moderate to severe

asthma attacks. Did your pediatrician tell you that Macey has had this

continuously since 18 months or did she think that was the first time it

happened? It would be impossible to know unless you have another xray

showing atelectasis at that time. My guess is that Macey's most recent bout

of asthma caused it and that she may have had previous episodes of it.

has had it about 8 times (hospitalized for it 4 of those times).

Glad to hear it is not bronchiactasis.

Let us know what ENT has to say about her sinus results....

BTW, today is the day we go in to meet with GI to discuss the Nisson in full

detail and make a decision as to when it will take place...I am a bundle of

nerves.

Autumn mom to Mark Cd5-Cd19 PID/GERD,

[Guest guest]

Dear ,

Thanks for asking about the boys....there have been a lot of things going on

here. is still struggling wit his asthma. He recently had yet another

asthma episode that required a major steroid burst. It is disheartening that

is on steroids daily and yet still requires such frequent burst. His

PFT from last week was awful.

A nisson is fundoplication surgery for GERD that is severe and causing

serious health problems. has such severe GERD....he is constantly

hoarse, has difficulty swallowing certain foods, has vocal cord nodules,

chronic sinusitis, severe asthma, has erosive esophagitis, despite the

multiple medications that are supposed to help him with these problems. Due

to the severe chronicity of these problems and the fact that medications in

the strongest doses are not helping, it has been decided that should

undergo a nisson to help prevent long term damage to his lungs (his lungs

already show COPD on his PFTS)

and esophagus....adeno-carcinoma and Barrett's esophagus (another form of

cancer)

are a major threat for at this point.

Mark is another story....he is hanging in there. Having problems with the

Leukocytoclastic vasculitis but not too severe right now. I may have some

information next week to post on the CD5-CD19 PID.

BTW...Annette, did you ever get the results from Alissa's Cd5 test? Let me

know.

Hope everyone is having a good week and welcome to the newcomers!!!!

Autumn mom to Mark Cd5-Cd19 PID/ GERD, A1A, ASA

[Guest guest]

Autumn-

How are the boys? Your family is constantly in our

prayers. Can I ask what a nissen is? Just curious.

=====

and

(congential neutropenia, hypogammaglobulinemia, chronic sinusitis and

leukopenia)

mom to Evan 6, 4 and Abby Rose 2

[Guest guest]

Hi Ursula, just a guess, but I would think that linear atelectasis vs.

scarring isn't an either or situation. I would say they see both but in

diff. locations. I know you'll have them clarify this for you, printing your

ques. out is a really good idea. It's awfully hard to remember everything in

the office. Good luck on the appt. Oh, and as someone who has had asthma all

my life, I would hazard another guess, the chronic asthma would prob. cause

more damage in the long run than something acute, which is usually treated

very agressively.Of course, that again is a guess and my questionable two

cents, take care. Becky CT results & tomorrows infusion

>

>

> Well we're off to Athens tomorrow. Infusion day has rolled around again.

> They all seem to be running together. Has it really been three weeks?

>

> The ENT is out of town till Friday (at which time we have a 9:10 am

> appointment) so his LPN faxed me copies of the CT dictation. The sinus CT

> was really decent except for some mucus thickening in her right anterior

> ethmoid " air cells " . Anyone know what an " air cell " is? But basically

all

> is clear and the right side has an infection in it. Also it says her

> " middle turbinates are slightly paradoxically (love that word huh) turned

in

> the region of the infundibula " . So does that mean she has a deviated

> septum? We'll learn more on Friday, plus I can always ask the immuno

> tomorrow.

>

> The chest CT showed " minimal linear atelectasis vs. scarring in the medial

> aspect of the right middle lobe " . NO BRONCHIECTASIS!!!!!!!!! If my

reading

> tonight is on the mark I hope it's atelectasis and not scarring. Wouldn't

> the atelectasis be reversible, whereas the scarring wouldn't? Again more

> questions for the immuno. Macey's pediatrician said that the findings

were

> the result of asthma.

>

> But here's the thing, I've always said how Macey is a big overcompensator.

> Only when she was 3-18 months old did she ever exhibit " true " asthma

> symptoms (wheezing, cough, blue lips). Since 18 months or so she's just

had

> the long expiratations (on listening with a stethoscope) and shortness of

> breath and the stomach muscle working overtime to breath. Only recently

has

> she started the peak flow meter which has helped us ward off at least one

> infection in the last two weeks.

>

> So did the scarring or atelectasis (whichever they decide she has) happen

> when she had the worst asthma symptoms or is she overcompensating so much

> that slowly the asthma is working on her lungs. And if the atelectasis

has

> been there since 18 months old (but then again never seen on xray until

> recently) is it chronic and therefore not reversible and just as bad as if

> there were scarring?

>

> Whew.... I should print this out for the immuno tomorrow. I'll never be

> this together in his office.

>

> So anyway, there's nothing acute happening. But I do wonder if or how

this

> would influence chest infections. More aggressive with infections or with

> asthma treatment? Hopefully starting the Flovent last week will be a

> proactive step.

>

> Well I'll hush now. Night all.

>

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

>

> > 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]

Autumn

That is an interesting fact I never knew. Considering Matt has been coughing

his lungs up for the past 2 weeks and that is his primary form of asthma.

No-one has ever mentioned atelectasis. We see the ENT tomorrow so I may

mention it. He seems to be doing better - cough wise- on the prendisone. Play

soccer today so he is less abnoxious. I know, it is hard on him. I mentioned

that he is on the prendisone to one of his teachers and that she/they may see

some behavior issues. Sure enough, she said they had a talk today.

Helen

[Guest guest]

Dear Autumn: I am so sorry is having such a rough time, I wish there

was something I could do, will keep all of you in our prayers and send BIG

CYBER HUGS TO BOTH OF THEM> As for the testing we are fighting our HMO to

get authorization to do the testing. They feel it is not necessary. That

her testing is adequate with just the IGG levels and subclasses. Socialized

managed healthcare stinks what else is new. God BLess and keep you, I

admire your inner strength.

all our love,

annette and alissa

>From: Autti@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Re: CT results & tomorrows infusion

>Date: Tue, 28 Sep 1999 10:35:19 EDT

>

>From: Autti@...

>

>Dear ,

>

>Thanks for asking about the boys....there have been a lot of things going

>on

>here. is still struggling wit his asthma. He recently had yet

>another

>asthma episode that required a major steroid burst. It is disheartening

>that

> is on steroids daily and yet still requires such frequent burst. His

>PFT from last week was awful.

>

>A nisson is fundoplication surgery for GERD that is severe and causing

>serious health problems. has such severe GERD....he is constantly

>hoarse, has difficulty swallowing certain foods, has vocal cord nodules,

>chronic sinusitis, severe asthma, has erosive esophagitis, despite the

>multiple medications that are supposed to help him with these problems.

>Due

>to the severe chronicity of these problems and the fact that medications in

>the strongest doses are not helping, it has been decided that should

>undergo a nisson to help prevent long term damage to his lungs (his lungs

>already show COPD on his PFTS)

>and esophagus....adeno-carcinoma and Barrett's esophagus (another form of

>cancer)

>are a major threat for at this point.

>

>Mark is another story....he is hanging in there. Having problems with the

>Leukocytoclastic vasculitis but not too severe right now. I may have some

>information next week to post on the CD5-CD19 PID.

>

>BTW...Annette, did you ever get the results from Alissa's Cd5 test? Let me

>know.

>

>Hope everyone is having a good week and welcome to the newcomers!!!!

>

>Autumn mom to Mark Cd5-Cd19 PID/ GERD, A1A, ASA

>

>>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]

Dear : Varivax is varicella vaccine chickenpox, hope is doing

better. We had long day at hospital with infusion. It took the pharmacy

two hours to mix and bring it up to the fifth floor. Then the IV nurse was

the wife of a physician I had gotten into it with four years ago. He said

my daughter had no real immune problem and I had a need to see her sick. I

took him to the AMA board and he had to write a public apology to us. And

then when the five hours were over the nurses were too busy to d/c the IV

and asked if I would mind doing it, so I did. Sorry for complaining, I

really appreciate home health care now!!!!!!!!!!!! Take care and tomorrow

will be a better day.

sincerely,

annette and alissa

>

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Re: CT results & tomorrows infusion

>Date: Tue, 28 Sep 1999 10:53:45 -0700 (PDT)

>

>

>

>Autumn-

>

>My prayers are with you and your family. I hate to

>see kids having to go through so much pain I want to

>take it away. Your boys are strong fighters that is a

>postitive.

>

>Thank you for some information on 's

>re-vaccinations.

>

>Annette- had part of the MMR over. She still

>didn't form antibodies to mumps but did for measles.

>Got me. What is the varivax?

>

>I put a call in to the immun. the nurse called back

>but said it was too complicated to discuss right now

>on the phone. I also voiced my concerns with

>breaking through2 on the preventative meds. Asking if

>this is the road to a long school year. Well see she

>is suppose to call back.

>

>Thanks again for the info.

>

>

>

>=====

> and

>(congential neutropenia, hypogammaglobulinemia, chronic sinusitis and

>leukopenia)

>mom to Evan 6, 4 and Abby Rose 2

>>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]

Anntette,

YOU GO GIRL!!!!!

Wife to Tom, Mom to 6 1/2 yr Zach, ???(don't know the specific type) PID, GERD,

chronic sinusitis, IVIG

At 03:44 PM 9/29/99 MST, you wrote:

>

>

>Dear : Varivax is varicella vaccine chickenpox, hope is doing

>better. We had long day at hospital with infusion. It took the pharmacy

>two hours to mix and bring it up to the fifth floor. Then the IV nurse was

>the wife of a physician I had gotten into it with four years ago. He said

>my daughter had no real immune problem and I had a need to see her sick. I

>took him to the AMA board and he had to write a public apology to us. And

>then when the five hours were over the nurses were too busy to d/c the IV

>and asked if I would mind doing it, so I did. Sorry for complaining, I

>really appreciate home health care now!!!!!!!!!!!! Take care and tomorrow

>will be a better day.

>sincerely,

>annette and alissa

[Guest guest]

Dear Autumn,

Please know that I am thinking about you and yours. Take care. I shall say

a special prayer for you.

Lee