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Dale, hello!

I was in the process of responding to your posting when my computer decided

to wipe the page away, so I have no idea if what I had written was

automatically sent!

Sorry if this then doubles up my reply!

I was asking if you could send me any info you gathered on the subcut

treatment, as s immuno has asked us to let him know today our decision

on starting immunoglobulin replacement via subcut rather than through IV.

I have found very little info on subcut route, so anything you can put my way

would be appreciated!

Gotta go tend the children- was in hospital yesterday and is still very

ill.

My best to everyone,

, mum to and

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In a message dated 12/4/00 9:36:10 PM Pacific Standard Time,

tonynmoo@... writes:

<< and i'm thinking maybe his sinus are a constant

source of pain to him. He's been complaining of a stomach ache alot too,

but i do't think it's nausea, as it doesnt' slow his appetite or >>

If he is having sinus problems, that could be the cause of his stomach ache.

It could be dripping down his throat. Just a thought.

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  • 1 month later...

Dale, I have meditated on your last post to me for several days. Since

then, I have asked God for strength through this trying time. I know in my

mind that it gets better; my heart aches for the pain & suffering that she

goes through with each new battle we face.

She asked me the other day why she had to take so much medicine all the

time. I really didn't know what to say. We've read the IDF's book for kids

together several times & she understands as well as any 3 year old can. She

says she feels better & doesn't need the medicine. I've tried to explain

what infections are and how they hurt her body, but I can tell this does not

" sink in. "

It's just so frustrating to deal with these issues, especially with very

young children.

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

chronic sinusitis, and alleriges), and Duncan Avery due on 5/17/01

Hi from Dale

> from Dale, Mom to Katy, CVID, age 16, and out on a dark and rainy night

> driving herself and a girlfriend back from the mall I hope!

>

> No, it doesn't end. But it does get better. They really do

outgrow

> some of these infections. I laugh and tell mothers of preschoolers -- at

> least Katy doesn't go around licking handrails anymore! ARGH!!!!!

Hang

> in there and remember that Scripture promises that God won't give us more

> than we can handle WITH HIS HELP! Remember to cry out to Him and He

will

> give you that extra strength to go one more mile today. And to start

fresh

> tomorrow (or at two a.m.). Just as we minister to these little ones --

He

> ministers to us and holds us together.

>

> In His service,

> Dale

>

> 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.

>

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Thanks Dale~

I hope Katy will be feeling better soon. We just got back from the

Pediatrician ourselves. Mark has another nasty bronchial/sinus infection and

has croup...AGAIN. Slow day here as well, both boys are lying down. It

is those nighttime hours that are bad. Take it easy and thanks again for

your words of wisdom.

Autumn (Mom to Mark Cd5-Cd19 PID and )

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Dale:

So happy that Katy is responding so nicely to the antibiotics. You are right

it does make it feel like it is worth while when you see such a dramatic

turnaround once on antibiotics.

I am so happy for you both!

Tina

( 15 CVID, JRA, ASTHMA)

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Dale - Great to hear Katy is turning the corner. I know that she feels

empowered by that also.

Matts last dose of IV abx was last night. Now we are onto Biaxin prophylaxis.

We will see.

Helen

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  • 4 weeks later...

Dale:

I read your post and understand completely why you are concerned. On one

hand the doctor is right - with young girls, chances are very slim that there

is a cancer, BUT when it comes to our kids, why take chances. MY 16 year old

was having pelvic pain and period pain. I went first to my

pediatrician. They did an ultrasound so not to subject my karen to such an

invasive procedure as the exam if it wasn't necessary. It turned out, my

had an ovarian cyst (a benign one, but a very large one) and did need

to see a GYN doctor. So in our case, it wasn't cancer, but it WAS something

that did need to be treated. We also found a female GYN doctor for

which helped somewhat with the exam. The female GYN was very nice and

reassuring, and it STILL took almost an hour to take off her clothes

and let the doctor do an internal. It was terribly traumatic for my daughter

even though the gyn was as gentle as can be. Now we go every 6 months, as

needs to stay on birth control pills to control the cysts and my

daughter has been more accepting of this uncomfortable procedure.

Dale, follow your instinct. If you need the reassurance, and if YOU feel she

needs to have an ultrasound done (at the very least) can you contact your ped

or another perhaps female doctor just to be sure?

I know this is a terribly touchy situation, having just gone through it

similarly this past year, I can only suggest you follow your instinct, It

really helped me in my daughter's case I was very glad I did.

If you do pursue this hopefully it won't show any problem and you can BOTH

rest easier.

Tina

(Mike 15 CVID, JRA and Asthma)

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from dale, Mom to Katy, CVID, age 16

We just returned from GYN appointment and I'm trying to decide whether I

like this guy or not. He was so kind and gentle and assured us in that

pacifying tone that there was absolutely nothing to worry about, there

was no reason to do an exam, there was absolutely no reason to do an

ultrasound, these things just happen to teenagers (spotting throughout

the month). When I asked how he could so easily rule out cancer or

infection, he assured me that as young as Katy was, the possibility for

cancer is practically 0, so I should just rest my little head and quit

worrying. So, why don't I feel good about this?

Why am I so naive to think that a doctor would actually take my concerns

seriously?

Oh, well. She's gone back to bed after being awake all night dreading

the exam she didn't have. Our assignment is to just keep on keeping

records and if the spotting continues to be a problem, we should call

him back.

So we wait and see....

I think I'll go back to bed, too! Maybe my head will be clearer when I

get up!

In His service,

Dale

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