Three Questions

[Guest guest]

Pat,

I don't really have any ideas on the IVIG for you. What I wanted to share

was a few tips on anger management with children this age. We started these

techniques with my 8 year-old this year and the difference has been phenomenal.

My daughter has had anger issues dating back to when she was about 3 years

old and her younger sister got all the " attention " because of her PID. The

anger has progressed over the years, and at one time I considered counseling for

her. I never could find a counselor with a philosophy that I could agree with

-- having my own advanced degree in psychology has its drawbacks sometimes.

Anyway, when we started grief recovery because of my husband going to prison,

I learned more about anger in children. Anger is not really the underlying

emotion. There is something else that's bothering the child: sadness,

frustration, disappointment, etc. Identifying that underlying feeling is the

real

trick. I think your son's biting is symptomatic of anger in this

situation...he's lost control, he's mad about his disease, he feels different,

etc.

1. Empathize with the child. They want to know that someone out there

understands what they're going through. Even if you say, I'm sorry that you're

upset about the treatments; I know it's hard to feel like you're different. I

can't make you better, but I will try to help as much as I can when you have to

have your treatments. Those few statements can help your child understand

that you're willing to travel the road with them.

2. Set boundaries for the anger. It's important to do this while your child

is NOT upset. Let them talk about consequences with you. Chances are,

they'll pick out consequences that are much more severe than you would ever have

dreamed. Then, when you " negotiate " with them for a less severe consequence,

you'll be the hero. My daughter thought she ought to have to stand in the

corner for an hour when she yelled at me. I told her that maybe sitting on her

bed

for 8 minutes would be ok. She thought she was the winner!

3. Establish your " rules. " In our house, we now have four rules for anger.

It's ok to be angry. Everyone gets angry at some time. It's what's done

with the anger that makes the difference. They may not (1) hit (or in your case

bite) someone; (2) call a name (3) scream or yell; or (4) throw a temper

tantrum. They have to find an alternative way to express their emotions.

Usually

they draw me a picture. Sometimes they write a letter to their dad or their

grandfather. Both girls have a journal they can write in without fear that

I'll read it. Whatever you decide, stick to it every single time they step

outside your boundaries and break a rule. My house is so much more peaceful

now.

4. Find time to discuss your child's fears, frustrations, etc. when they're

not experiencing these emotions. Talking to my kids, even 5 minutes a day,

has made a big difference in our relationship.

Like I said, I don't know which way is best for your IVIG treatments; I do

know that he's acting out because of how he feels about his situation. By the

way, it took about 3 weeks to see dramatic difference in our house. I think

that's a pretty quick " cure " if you ask me. I hope you find some relief to

these

issues.

Ray, mother to Tabitha (age 8), Autumn, age 6 (selective antibody

deficiency, chronic sinusitis, allergies, and asthma), and Duncan (age 2)

[Guest guest]

Pat,

Ray has given you some excellent ideas for anger management. I did

want to add my two cents. My son has issues with losing control in his life.

Constant illness is a total loss of control. I find that giving him lots and

lots of choices (when they are appropriate) helps a lot. Of course, taking

meds is not a choice, but I ask if he wants pills or liquid (always pills) when

does he want to take it before or after his meal, etc. This really helps him

feel like he has some control. When it isn't urgent to go to the Peds, I let

him help decide when he thinks he should go in. For a younger child, it might

be as simple as choices in food or clothing or rewards for IVIG day.

I would also like to point out that he is angry with you because it's safe

to be angry with your Mom. This doesn't mean it's okay act out, but it is a

good sign that you are his safety net. Have you considered a counselor that

deals with chronic illness?

Sandi--Mom to , age 10. Immune Deficiency, Tetrology of Fallot,

Pulmonary Valve transplant, Mitral Valve stenosis, chronic sinusitis, chronic

ear

infections, asthma, severe allergies, GERD, Tethered Cord Syndrome.

[Guest guest]

> so now they

> have said why not try the IVIG way as this would mean treatmant only

> every three week's and an all day stay or an overnight stay at the

> hospital,i AM GETTING REALLY CONFUSED AND WORRIED because i do not

> know any more which would be the best way for him.

> Can ya all tell me what it is like to have it done the IVIG way is

> there any more riskes this way

> Pat

Hi Pat,

I am very new to IVIG as my 12yo daughter just had her second one.

The first time, the IVIG was completed in under 3 hours. But she got

a big headache - so the second time, they slowed down the infusion -

and she was done in under 4 hours. She didn't have a headache at all

the second time!!!!

She has it done at a children's hospital. The setting is sort of like

an emergency room - but there are TV's for each area. The nurses (so

far) have been wonderful and it is a very pleasant setting (well - as

pleasant as getting stuck with a needle CAN be anyway).

Sandy

(Mom to Riley, age 12, specific antibody deficiency)

[Guest guest]

Pat:

Oh, I can really sympathize. I found 3 to be the hardest age (so far! wait

'til the teens, right?!). At one point was having anger issues during a

period of a lot of illnesses, needle sticks and other turmoil, and she stabbed

me in the back with a fork on purpose.

I liked the advice Ray and Sandi gave you. Regarding the giving of

choices... I don't know if it's the best thing to do (so much like a bribe), but

with , one choice I gave her was whether she wanted a small toy ($2 or

less) or treat when she got a stick or uncomfortable medical procedure. I

figured it was a type of bribe but boy didn't she deserve it?! She always picked

this one special bakery's cookies, it became a ritual. She began to associate

needle pokes with getting this special treat that she never got any other time.

Can't say if that's right but it sure made our lives easier. I always

empathized too -- telling her she was being brave (but not demanding on bravery!

letting her know it was okay to be scared), telling her I understood and that it

DOES STINK to have to get needle sticks. Just because it's a part of your

" normal " life doesn't mean it's great! We can still not like it.

Another thing is when something bad happens (SQ day or another hospital

visit), maybe make that *his* day and let him choose something special to do at

home, like whatever video he wants or whatever books or toys or craft activity,

etc. You're ALL HIS, you'll play whatever game he wants? Maybe that will give

him some feeling of control back on a day when he has to give it up in such a

crummy way.

Hope that helps --

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4-1/2,

GERD, dairy intolerant -- currently has polysaccharide antibody def, previously

had transient IgG, IgA, t-cell & other defs)

[Guest guest]

I can answer a little bit of this. The location of things does show

on the CT. Before my second surgery, my surgeon spoke to me at length

about the risks associated with the amount of polyp and scar tissue

near my brain. Essentially, she let me choose whether I wanted it

removed. I said yes. I really think it's a question of having an

honest surgeon with steady hands who knows what he or she can handle.

There's always going to be risk, but I don't think it's huge. Then

again, I could have been misreading what she was saying.

As to the circulation thing, my doctor refers to that as (I think)

the " sympathetic effect. " Basically, if you do exercise and push

yourself hard enough, it's been my experience that things will open

up a little. For instance, I used to walk about 6 miles a day before

the asthma took me out. Eventually, my nasal passages *would* open

up. That said, Singulair works way better. See also: the rebound

effect. Everything would open up, but then it would close up twice as

badly, plus be more painful. Can't speak to why that happens.

I've often thought this disease would be much improved if we could

get a constant VERY slow drip of adrenaline or something. But that's

just a theory. We'd probably all have heart attacks and die.

>

> After reading recent posts, I now have several questions:

>

> 1. As far as anosmia goes, how would one know whether their

> olfactory nerve cells are blocked by inflammation or polyps? Seems

> like finding the fix (which is high on everyone's wish list here)

> would greatly depend on which one it was. Most of us seem to get

our

> sense of smell back when on Prednisone, but is that because it

> shrinks the polyps or because it reduces inflammation? Which also

> makes me wonder what, exactly, are polyps? Are they like fibroids,

> or are they inflamed tissue?

>

> 2. I've always been a little worried about " dangerously-located

> polyps. " Do we need to be concerned about where our polyps are

(i.e,

> near the brain, or pushing on important thin bone, in the ears

> somewhere, near the eyes) and if so, how would we find out if we

have

> something like this? Would an MRI or CT scan show it?

>

> 3. Someone yesterday mentioned almost being able to smell things

> after exercising, when circulation is running high. I have

wondered

> about this, too, because I think I have the same " glimpses " of

smell

> when exercising. If better circulation is helpful, are there other

> ways to increase circulation in our nasal passages?

>

> in land

[Guest guest]

Hi ,

Excellent questions. I'm sure Carol or someone else that's more technically

qualified can shed more light on your questions that I. I think you have

touched on some of the biggest and poorly answered questions about our

syndrome.

With most of my doctors and surgeons, I've never had the question about

polyp vs. inflammation adequately answered either. I've had one ENT look up

my nose and tell me that the smell sensor area wasn't totally blocked by

polyps and therefore I should be able to smell - but I couldn't. That

implies either inflammation (or something else) is the cause. Actually, it's

been my understanding that inflammation and polyps (distended and

fluid-filled mucus tissue) are interrelated.

Yes, I understand that swelling polyps in some areas can cause eye damage

and bone thinning. A CT scan should clearly show them. When I had my

surgeries, the ENT did not use the new computer-guided techniques and

therefore was reluctant to get too close to my eye or brain. I'm not sure,

but I also wonder if there is a reluctance to get near the nerve sensors

because they might damage them with scar tissue. All I know is, I was

disappointed when I found out that he didn't " go that high " .

All I know is that both aspirin and prednisone reduce both swelling and

polyps and do bring back excellent smell and taste in some of us. I have

experienced the exercise phenomenon also.

Jim

Three Questions

After reading recent posts, I now have several questions:

1. As far as anosmia goes, how would one know whether their

olfactory nerve cells are blocked by inflammation or polyps? Seems

like finding the fix (which is high on everyone's wish list here)

would greatly depend on which one it was. Most of us seem to get our

sense of smell back when on Prednisone, but is that because it

shrinks the polyps or because it reduces inflammation? Which also

makes me wonder what, exactly, are polyps? Are they like fibroids,

or are they inflamed tissue?

2. I've always been a little worried about " dangerously-located

polyps. " Do we need to be concerned about where our polyps are (i.e,

near the brain, or pushing on important thin bone, in the ears

somewhere, near the eyes) and if so, how would we find out if we have

something like this? Would an MRI or CT scan show it?

3. Someone yesterday mentioned almost being able to smell things

after exercising, when circulation is running high. I have wondered

about this, too, because I think I have the same " glimpses " of smell

when exercising. If better circulation is helpful, are there other

ways to increase circulation in our nasal passages?

in land

[Guest guest]

In terms of exercise, I don't know if I saw that post but I had been

thinking a lot about that lately. I haven't really been able to

smell for years, but that's not really my concern anymore. I just

like to be able to breathe through my nose. And I have noticed that

exercise seems to definitely clear me out. I had not noticed this

until these past several months when I started exercising regularly

again. But it really seems to make a big difference.

I am curious about this. I don't think it has to do with the

better circulation, though. I rather imagine it's something to do

with a chemical reaction, maybe the metabolism of the things that

are bad for Samters or something like that. I really don't know. I

certainly don't think *lack* of exercise causes Samters or anything

like that, but it seems there may be a possibility that exercise can

help the symptoms of Samters. Unfortunately it's probably not that

simple, because if your asthma isn't under control it may get worse

during exercise, etc. But in terms of the nasal symptoms, wow, I'm

really noticing a big difference. I seem to feel worse if I go for

a few days without exercise now.

I will see if someone else wrote about " what polyps are " because

this is something I have more of an answer to. I don't know

much about the dangerously located polyps question.

Lori

[Guest guest]

Dear

1.Although my ENT mentioned inflammation I still wonder about the

dried

up or stuck mucus in the region as mucus probably cant drain properly

with small polyps. Some mucus thinner may be helpful.I used mucobroxol

long term , I think that helped.

For the moment can t smell but breathe well,like doesnt feel

ubstructed,specially at night,and doesnt feel I have an infection

or cold either.

2.Depressing.

3.I should like to run as fast as I can ,pretending I am chased by

a wolf or something and see what happens to my sense of smell!!!!

(or go ride a roller coaster,there should be enough air and pressure

and adrenaline to sort that one out!!!).I am also seriously thinking

about

hyber something Oxygen therapy.Will keep you posted If I get good

results with either

>

> After reading recent posts, I now have several questions:

>

> 1. As far as anosmia goes, how would one know whether their

> olfactory nerve cells are blocked by inflammation or polyps? Seems

> like finding the fix (which is high on everyone's wish list here)

> would greatly depend on which one it was. Most of us seem to get

our

> sense of smell back when on Prednisone, but is that because it

> shrinks the polyps or because it reduces inflammation? Which also

> makes me wonder what, exactly, are polyps? Are they like fibroids,

> or are they inflamed tissue?

>

> 2. I've always been a little worried about " dangerously-located

> polyps. " Do we need to be concerned about where our polyps are

(i.e,

> near the brain, or pushing on important thin bone, in the ears

> somewhere, near the eyes) and if so, how would we find out if we

have

> something like this? Would an MRI or CT scan show it?

>

> 3. Someone yesterday mentioned almost being able to smell things

> after exercising, when circulation is running high. I have

wondered

> about this, too, because I think I have the same " glimpses " of

smell

> when exercising. If better circulation is helpful, are there other

> ways to increase circulation in our nasal passages?

>

> in land

[Guest guest]

My ENT tells me that my anosmia results from not being able to get scented air up to the receptor surface high in my nasal cavity. Polyps and inflammation there, or lower, can block the air flow. There have been times when I can breathe beautifully through my nose but am still anosmic. Might that mean that there is airflow-blocking inflammation and/or polyps up so high that airflow to the olfactory mucosa is blocked but nasal breathing not affected? Another query -- unless the damn polyps have pooched out of the sinuses and into the nasal cavity, how can polyps in the sinuses induce anosmia? Years ago an ENT at a research institute suggested to me that the inflammation that accompanies the growth of polyps might be pinching the olfactory fibers as they pass from the receptors through the tiny holes in the cribriform plate to the brain. This might prevent olfactory signals from reaching the brain even if the receptors were generating signals OK. Regarding the exercise phenomenon, it seems to be a function of sympathetic arousal causing decongestion, just like amphetamine sprayed in the nose will. I used to get frightened every time I went to see my ENT (fearing that he would say I need the surgery again right away), and that fear would jack my sympathetic system up so much that I would decongest and get my sense of smell back for my visit with him and then lose it again that evening. What are polyps? Check out the photos and descriptions at http://personal.ecu.edu/wuenschk/Nose-pics.htm, especially Nasal Poylps and Nose Photographs. They are described as "a mass of gelatinous tissue" which " forms gradually from localized swelling of the sinus mucosa or from the nasal mucosa." They are said to start out small and grow each time there is swelling of the underlying mucosa. In other words, it is the edema of our mucosa that gives birth to these damn things and fuels their growth, like slowly blowing up a balloon, but with gunk instead of air.Cheers,Karl W. Three Questions

[Guest guest]

With respect to the ansomia, I have the same situation. There are times when I can breath fine through my nose but cannot taste or smell a thing.

Re: Three Questions

My ENT tells me that my anosmia results from not being able to get scented air up to the receptor surface high in my nasal cavity. Polyps and inflammation there, or lower, can block the air flow. There have been times when I can breathe beautifully through my nose but am still anosmic. Might that mean that there is airflow-blocking inflammation and/or polyps up so high that airflow to the olfactory mucosa is blocked but nasal breathing not affected? Another query -- unless the damn polyps have pooched out of the sinuses and into the nasal cavity, how can polyps in the sinuses induce anosmia?

[Guest guest]

In message <000801c5b6f2$8bfa6170$6d2af004@winxphome> you wrote:

> Well, my kombucha has been brewing since August 31, so ten days

> today. I used 3 bags of Lipton and 3 bags of organic green tea,

> with white refined sugar. The jar has not been disturbed since I

> started it, and I tried some today.

>

> My first question. How do you pronounce kombucha? KOM-boo-cha?

> Or kom-BOO-cha?..... Kom-buck-ah?

We here pronounce it kom-BOO-cha :-)

> Second question. How is it supposed to taste? Mine tastes sweet

> with a fizzy taste.

Sounds as though it's still too sweet. There should be a pronounced

pleasant acidic/cidery taste. You might well have to go to 2 weeks

to achieve it.

> Third question. There is a mass about 1 inch wide on top of the

> mother. Is this the " baby " that everyone talks about? It just

> looks like bubbly goop.

Yes, it is the beginnings of the 'baby'.

It will need several more days to solidify somewhat.

Sometimes it is reluctant to form a solid culture... I have that

happen sometimes.

If that happens just brew on with your momma culture (and whatever scrawny

bits of the new one there may be!)

It does not matter, as long as your kombucha Tonic is fine.

It's not only the scoby on top that is the Kombucha culture, but the

whole of the liquid as well with yeast and bacteria distributed

all through the liquid, bacteria mainly uppermost, yeast more

towards the bottom.

Starlene, your brew sounds fine.

Just give it some extra time.

Greetings and Kombucha bubbles,

Margret:-)

--

+---------------------------------------------------------------+

Minstrel@...

<)))<>< www.therpc.f9.co.uk <)))<><

+---------------------------------------------------------------+

The greatest female financier in the Bible was Pharaoh's daughter:

She went to the bank of the Nile and drew out a prophet.

[Guest guest]

Margret, thank you for the pronunciation help, and for your

reassurance. I will leave the kombucha for a few more days.

Thanks. Starlene

> Starlene, your brew sounds fine.

> Just give it some extra time.

[Guest guest]

Hi hon

the fact nobody has answered implies that we really don't have the knowledge or

experience of this.

I do supplement with hyc but although I have high bp I am on a bp lowering drug

'olmatec;. Perhaps once your bp is under control you can supplement? If they

cannot get it under control it warrants further investigation as to cause.

Perhaps you need to find out the underlying cause for your high bp anyway, or

are they saying it is 'esential hypertension' like mine? It may be the

hypothyroidism which I believe caused mine through various mechanisms like not

absorbing my minerals properly due to slow metabolism, but that is just my

belief.

Ask the Dr to get your hypertension under control before you go on hc and watch

the bp like a hawk is what I do, but I can only tell you what I do I cannot

advise you as such. Best asking your Dr

lotsa love

Dawnx

[Guest guest]

Just bumping this....

> hi,

> can anyone tell me -

> a) is it safe to supplement with hydrocortisone even

> though I have hypertension? (I have moderate adrenal fatigue).

> is soy lecithin to be avoided when taking thyroxine?(it's a

component of another Rx drug I take).

> c)Any reason why I have low ferritin,43(no ref range), low iron

12,(12-26) highish folate,13.5 (2.3-12), and hb15.3 (top end)? My b12

> is 379, (150-900), and transferrin 1.9 (2-3.2).

> Any advice welcome.

> thanks,

> A

>

[Guest guest]

On the 24th of September, I hit my 4 month mark of having VSG surgery. I have been reading some of the recent posts and it has sparked a few questions.

1. I was told that I should wait at least 1 month before taking any pills whole. I did that and crushed all my pills and combined with juice. After 1 month, I started taking my smaller pills whole. And finally, at 3 months, I could take all my pills whole except for my calcium and mulitivitamin. I began cutting my calcium and mulitivitamin pills in half and taking that. I still cut my calcium and multivitamin in half because it is too hard to get down otherwise. Do you think this is okay, or is a 1/2 still too large of a pill to swallow? I feel like if I can tolerate it, it should be fine.

2. I know I was told at the beginning and before surgery not to take any aspirin, etc. The generic for Advil is listed as ibuprofen- do you all agree that that is acceptable to take now as needed?

3. Finally regarding Nexium, Prilosec, etc...Dr. Aceves told me at the hospital to take this at least one month, but that if I didn't have any problems, I could discontinue after one month. However, Gaby has said that I should remain on Nexium for six months. I do not have any isues with acid reflux, heartburn, etc. I have discontinued taking Nexium since I don't have any issues, but I'm interested to know what your take on it is. Does it prevent issues later on?

Thanks and Peace,

232/172/135-140???