Re: Happy Holidays!

[Guest guest]

Happy New Years, everybody!

sees the ped tomorrow to get the ball rolling with the tests.

Sinuses don't seem to be the issue here, as has never had sinusitis

and the symptoms are completely different.

The headaches are continueing and getting worse.

I'll keep you up to date, Maurita.

Take care all,

, mum to (5) and (2) both with Selective IgA def,

selective antibody def, hypothyroidism, asthma.............

[Guest guest]

--i am interested in hearing what your doc's do for 's

headaches--diagnostically and treatment wise. Welsey has chronic

sinusitis, and headaches, how can they not be connected?? We saw a ped

neuro doc nearly a year ago, and he determined, falsely i think, that W's

hdch's were vascular in nature, so put him on a migraine med. It wasnt'

effective then, and my reg. dr. wanted to try it again, after 3 weeks, it

is clearly ineffective...we will be doing another ct scan on him in about

2 weeks--one on , my middle son, it's already scheduled, Jan 11.

My husband will have to get one, too, if his sinus inf. is not gone in

another 2 weeks, he's had it for several months...He had sinus surgery,

too, almost 2 years ago, and he benefited from it greatly, this has been

the first extended si he's had since then. Okay, i'm off the subject,

sorry about that. The good thing is that my sinus are finally under

control, after such a long couple of years...Anyway, please post waht the

dr's do for your !! Thank you!! Maurita, mom to Wesley, sel iga

def, andrew, and samuel

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[Guest guest]

Maurita,

I know this was directed to , but I'd thought I'd chime in

here because Autumn does get headaches quite frequently. They're not

bad ones (yet).

At first, we thought the tubes would help. That didn't work on the

headache, but it did clear up the ear pain from the sinus pressure.

Then, we tried the nasal washes that National Jewish recommended.

It's to clean out the sinus passages, reducing the swelling and

causing the steroid nasal sprays & other meds to work more

effectively. Her headaches have completely disappeared!! The

reason: I suspect it's because there's very little swelling in the

sinus passages, causing the sinus pressure to be next to none.

Let me say that, at first, my husband and I were extremely

skeptical. We honestly did not think that salt water cleansing out

the nasal passages would have any effect on her health. I have come

to believe that we are wrong about that. She still has the dark

circles and I think those will always be there. We're waiting on the

final report from National Jewish to get some of the test results

that were pending there--like the CF DNA test to see if she's got a

mild variant of CF (I doubt it.). We'll probably retest her immuno

levels in February or early March to see if there's been any

improvement there either. We do still have days when she's more

tired than usual, which I think is a direct result of the PID and

nothing else.

I have the instructions that the hospital sent us home with if you'd

like them. Or, I could just post the procedure that we use if anyone

would like to see it.

Sorry this got so long!

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

asthma, chronic sinusitis, and allergies), and #3 on the way!

[Guest guest]

and ,

We are dealing with the same issue right now regarding CF. With 's first

sinus surgery the pathology report indicated " numerous cysts, consistent with

cystic fibrosis. " My first cousin has CF so that really sent us through a

loop. underwent two sweat chlorides and DNA testing. All were normal,

with a note at the bottom of the DNA testing indicating that there was still

a 10% chance that had CF. Recently however there was an article in

(either JAMA or NEJM and I believe it was posted in this group) about CF and

chronic sinus disease. What the authors were stating was that in some cases

of severe sinus disease it was found that these patients had one CF mutation

verses two. We were contacted within 3 days of that publication by 's

ENT and allergist both telling us that they immediately thought of .

Since had already had the CFTR DNA testing done, they had my cousin get

checked to see what her mutation was as she has full blown CF. The usual

testing consists of the 32 most common CF mutations. There are over 400

mutations in all. If my cousins mutation is one of the common 32 then we

will not have retested. If however, she has one that is not common,

then we will have tested for her exact mutation. Her results came in on

Friday so we are sitting on pins and needles right now waiting to hear the

news.

As indicated, there are cases of mild CF that can go undetected or

assumed to be bad asthma and sinus disease. Just a thought, there is another

condition where the sinuses and asthma are extremely severe....National

Jewish is world reknowned for its work in this area...Aspirin Sensitive

Asthma also known as the Samter's Triad. The traid consists of the patient

having all three of the following, nasal polyposis, severe asthma and aspirin

sensitivity. This triad can sometimes mimic the sinus component of CF. My

son has ASA.

Autumn (Mom to Mark Cd5-Cd19 PID and )

[Guest guest]

-

Abby had the sweat test done 3 times last winter. It kept coming back

borderline. She also had a 72 hour fecal fat test done. Which came back as she

was malabsorbing. The number one cause of malabsorbing is CF. So we met with

the CF Dr in NYC at the request of our GI. He said the same thing. We went

through the genetic testing the 100-150 most common mutations. But he also said

that there are more out there and that Hopkins can test for them but it

could take a year. So because Abby's immunglobulines came back ok, they tested

her neutrofil count 2 times a week for 6 weeks. She ended up having cyclic

neutropenia. So that in conjuction with the malabsorbion and a Bone marrow

biopsy which revealed that she has MDS led to the diagnosis of Shwachman

Syndrome. If she wasn't neutropenic they would have treated her as a CF

patient. As she has had numerous episodes on pneumonia and my cousin's daughter

has CF.

Will be praying for you.

sandraray@... wrote:

,

Autumn was tested for " classic " CF last year and her sweat chloride

test came back normal. So, we thought we had completely ruled that

out. When we went to National Jewish, they mentioned a variant of

CF. I told them that Autumn didn't have CF since her sweat chloride

was normal.

The dr. there explained it to me this way: Autumn does not

have " classic " CF since there are times when she has a clear chest x-

ray. With CF, chest x-rays don't come back clear because there's

always some fluid build-up in them. He went on to explain that there

are some people they have found in their 60's & 70's who have had the

same types of problems all their lives! These people complain of

chronic infections, asthma, etc. but do not have PID. When tested

with a DNA test, these people come back positive for CF. However,

since no CF patient has ever lived that long & because these people's

symptoms aren't as severe, they've come to the conclusion that there

are several mild variants of CF in existence. I am assuming this is

a recessive gene since it is so rare, and in that case, both parents

have to pass on the recessive gene in order for it to manifest

itself. (I am assuming you know what recessive genes are vs.

dominant ones; otherwise, I can explain that also--I still remember

stuff from my 10th grade biology class!!!)

People with these mild variants act somewhat like PID patients,

except their immune system is not always the culprit. They have

sinusitis, asthma (almost always he said) and colds which just won't

go away.

The DNA test has to be sent to Massachusettes for testing &

verification. It takes 4-6 weeks for the results to get back. He

said the chances are so remote that she has it that it's almost not

worth testing. But, since she exhibits all those classic symptoms,

he thought it was worth a shot. I personally, don't think she has

CF, even if it's a variation, but we are still waiting for test

results. I am expecting a report from National Jewish in the next

week-2 weeks.

Hope that helps some.

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

asthma, chronic sinusitis, and allergies), and #3 on the way!

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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.

, Mom to:

Evan 7, 5 (Shwachman Syndrome, CVID, Chronic Sinusitis, severe neutropenia,

leukopenia, and kidney reflux) and Abby Rose 3 (Shwachman Syndrome)

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

[Guest guest]

Maurita,

I too would think there was a link between Wesleys sinus troubles and the

headaches, but that is only a personal viewpoint, I'm not a dr, so what do I

know?!

For , sinuses did'nt seem to be the problem. I have often wondered,

and a few times asked the group, about sinusitis because I have heard so

much about sinusitis being so common with people dealing with pids, and was

trying to figure out if that could be a problem for too, after his dr

(family doc) had suggested last summer, when presented with red eyes

and slighlty runny nose. (In hindsight now, I believe it must have been

allergy related.) I was never really sold on the idea that sinusitis was

part of s problems, and definetly did'nt think the headaches were any

thing to do with it.

The ped said just as much today, he is certain it is not an issue, and

suggests the headaches are migraines or cluster headaches. has been

put on Periactin for a 10 day trial to see if it can break the migraine

cycle, if that is what the headaches are. If there is no improvement, he

will go ahead and have a CT scan. I have been told Periactin has few side

effects, the most notable is drowsiness, and an increased appetite. Has

anyone else come across other side efects? I would like to be prepared, I

remember vaguely this med being mentioned b4, and am sure someone posted with

a very disagreeable reaction to this drug.

I hope you all enjoyed your New Years celebrations! Seems strange to be

writing 2001 on everything when I had'nt really got used to writing 2000 yet!

, mum to (5) and (2), both with Selective IgA def,

selective antibody def, asthma, hypothyroidism