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Glad to hear your son's is doing fine. Not having any proteinuria is

certainly a great sign. I'm not sure that micro-hematuria at this point is

really significant. It's not unusual for this to persist even though the

proteinuria may be down. I'm sure the tonsillectomy really did help, because

that's the classic case where it does seem to be effective in reducing

proteinuria -- when tonsillitis and throat infections are a recurring

problem.

Pierre

update

> Members:

>

> As I have mentioned I have an 8 year old boy - - diagnosed

> with IGAN. Recently, he had his biannual checkup . We did receive

> some good news in that his protein samples came back negative - which

> after his initial readings of a year ago when hematuria first

> appeared, there has been an obvious decline. He still does have

> microscopic hematuria though - and perhaps Pierre would have specific

> info on hematuria correlations.

> Will did have his tonsils removed as he had severe tonsillitus

> throughout his childhood - and so far there seems to be hope that the

> tonsillectomy is helping in at the least the relief of throat

> infections as he has not had any more sore throats since the

> procedure. And as his protein count is now negative - we can only

> think that the tonsilectomy has been a good move.

> A Dr. Brewer of Texas Childrens Hospital in Houston emphasis on a

> cure of this disease is likely in the genome research that is moving

> forward in the medical world...... the way medicine looks at disease

> will be change dramatically from the way we now know to research - and

> the advances will most certainly involve understanding genetic

> histories..

>

>

> eGroups Sponsor

>

>

>

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  • 2 months later...
Guest guest

Oh ,

I am praying furiously that your will be awarded this. I know from

bitter experience how stressful this is. We (Ann and I) were awarded

Disability Living Allowance last week. What a difference it will make

to us both. Shall continue the prayers until you tell me you have been

awarded it.

Love and Hugs,

Lilian

Fers wrote:

>

> Hello Everyone!

> I got a call from disability today. It seems I've

> made it through the first 3 steps of the process. My

> claim has now been sent to the review board in KC,MO

> for final decision. I should know within the next 2

> weeks. Wish me luck. I've been fighting since 1996.

>

> F

> CEDS

> Lebanon,MO

> USA

>

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  • 3 weeks later...
Guest guest

I can relate with your frustration... Maybe you can refer to the

Physician list Jill has somewhere and there will be someone close to you

you can use.. Good Luck.,... we all ahve gone through this and it really

S**KS!!!!!!

:o(

Big Hugs

debby

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  • 3 months later...
Guest guest

;

Good luck and God Bless.

I sometimes forget, the stress of the situation

doesn't always disappear after the test results are

in. I hope this turns out to be the most minimal thing

possible for you.

--- karen@... wrote:

<HR>

<html><body>

<tt>

Hi Everyone<BR>

<BR>

Just to let you know that I had my ultra-sound and

x-rays yesterday, <BR>

this was to check for gallstones, check of kidneys and

liver, the <BR>

latter two being normal. & nbsp; No sign of any

gallstones, although <BR>

gallbladder was inflamed, I have been advised to avoid

all dairy <BR>

products, as this is probable cause of my pain. & nbsp;

Also from ultra-<BR>

sound, not xray, the radiologist has seen fluid around

my heart and <BR>

lungs, this he has suggested could be a bout of

pleurisy. & nbsp; Would make <BR>

sense, as I keep getting upper respiratory chest

infections.<BR>

<BR>

Should have a more definitive picture on Tuesday once

the consultant <BR>

has looked at my chest x-rays. & nbsp; Needless to say

with fluid around the <BR>

heart and lungs, other things have to be checked out

as well, i.e. <BR>

tumours etc, so you can imagine I am very worried at

the moment, as <BR>

well as feeling absolutely lousy, hence my absence

from the group <BR>

just lately.<BR>

<BR>

Anyway will post the outcome next week, and whilst

writing I did say <BR>

I would try to get to the chat room this evening, but

I doubt if I <BR>

can make it now, I seem to be spending most of my time

in my sick bed <BR>

LOL.<BR>

<BR>

Still I am still smiling .....just.<BR>

<BR>

Best wishes<BR>

<BR>

<BR>

<BR>

</tt>

<br>

<tt>

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  • 5 years later...

Hi all,

Just wanted to let you know that my Dad is doing better (sort of).

His blood sugar is now down to about 12 (quite an improvement over the

60 that it was yesterday). We saw him earlier today and he looks like

hell, feels like hell. I think that i was expecting him to look and

feel a lot better since his blood sugar is so much better but that was

not the case. I'm guessing that it takes the body a while to bounce

back from that kind of thing and the severe dehydration. Looks like

if he continues on prednisone, he's going to be insulin dependent--I'm

scared about this as I know very little about it and my parents know

nothing. Any suggestions on how to prepare for his homecoming?

Research I can do. I believe they will do some counselling and

teaching at the hospital before he goes home but want to prepare

myself as best I can. Also have to consult with his respirologist to

see what the recommendation is on continuing prednisone or not.

Thanks for listening and I look forward to any advice you all may have.

anne (dad ipf 03/06)

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Anne, I wish I had some advice or tips for you, but I have no experience with what you are dealing with. I just want you to know, "They also serve who only sit and wait"....I pray for you and "Dad".

Sher ipf 5-06

Update

Hi all,Just wanted to let you know that my Dad is doing better (sort of). His blood sugar is now down to about 12 (quite an improvement over the 60 that it was yesterday). We saw him earlier today and he looks like hell, feels like hell. I think that i was expecting him to look and feel a lot better since his blood sugar is so much better but that was not the case. I'm guessing that it takes the body a while to bounce back from that kind of thing and the severe dehydration. Looks like if he continues on prednisone, he's going to be insulin dependent--I'm scared about this as I know very little about it and my parents know nothing. Any suggestions on how to prepare for his homecoming? Research I can do. I believe they will do some counselling and teaching at the hospital before he goes home but want to prepare myself as best I can. Also have to consult with his respirologist to see what the recommendation is on continuing prednisone or not. Thanks for listening and I look forward to any advice you all may have.anne (dad ipf 03/06)

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