Re: (unknown)

[Guest guest]

Hi Sascha,

Nice to meet you, and welcome to the CEDA group. My name is Ginley and

I am a 35yr. old mother of three. I have the Vascular type EDS. I do not

know yet if my children have but have my suspicions based on signs, but we

are still waiting for all DNA testing to come back. The only time I have had

what you describe is after a bruise, but did not occur spontaneously, so I

don't think that helps your situation. We are all here to help you, so take

advantage of the list. Also there is a list for teenagers too, if you are

interested. Jill can give you the direct link, but I think if you search

yahoo for cedateens you will find it. Take Care, will be saying prayers for

you. Love, Sue Ginley

[Guest guest]

Welcome Sascha

To one of the warmest, friendly, informative and compassionate mailing lists in

Cyberland. Well.... I am biased but I think it is. I have been a member of

other lists, and this is one of the nicest I have found. Anyways... I hope you

get all the information you need.

I'm Helen and I was diagnosed with Hypermobility Syndrome... but I just say I

have wacko joints to match my wacko personality. <giggling> I probably have a

string of neurological disorders too .... but I am too scared to go and find out

in case they lock me up. hee hee hee.

Anyways.... Welcome.

Hugz..... Helen

Hello, I'm new. My name is Sascha. I'm a 23 year old EDSer with probable

hypermobility....

[Guest guest]

Hi, don't know if this might be related, but I've been reading up on

Mastocytosis. From what I've read there seems to be some crossover of

symptoms... Anyone know anything?

Rory

>

>Subject: (unknown)

>Date: Thu, 19 Apr 2001 22:08:57 -0700 (PDT)

>began developing round red-purple marks,like super-thin skinned, flat

> >blood blisters (perhaps several layers down?). These had " halos " of

> >palek, brownish bruising around them... It has been 2 years now, and I

_________________________________________________________________________

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[Guest guest]

Sascha,

I have been diagnosed with Crohns/inflammatory bowel disease, and I

definitely believe it is related to my presentation of EDS, and although I

can't get my GI doc. to agree, my primary definitely thinks it is the EDS. I

have inflammation from the mouth all the way through to the rectum.

Irriatable bowel syndrome is different, as usually no inflammation is

detected on endoscopy, or colonoscopy, but the symptoms are very similar, and

just as painful irregardless of what you have. If you have inflammation in

the mouth, I would suspect you have it other areas in the GI tract, as this

is not abnormal to have it in more than one area. Have you seen a GI doc?

Have you had any scopes to determine what your problems are? CT scans did

not show anything on me with this problem, actually never shows anything on

me. The colonoscopy, and upper endoscopy is what showed the inflammation on

me. I also was frequently nauseous, abd. pain constantly, and bladder

irritation, and pain, and also gyn problems. It is interesting you mention

endometriosis, as this can also be a definite cause of GI problems, and can

be very painful, and cause a lot of problems. This also can be difficult to

diagnose from tests such as xrays, sonograms, and Ct scans. You need to push

for an MD to get to the bottom of your problems. Poor nutrition caused by GI

probs, can lead to more frequent problems. Hope this helped you. Love, Sue

Ginley

[Guest guest]

Thanks a lot Sue!!! yes I know poor nutrition is a big problem now-

I was 6 days in the hospital in Feb for chest pain, racing pulse,

low blood pressure... and since i went through ER and was

expecting in-out, I didn't bring anything with me for a long stay.....

My mom wanted to fly out, but MDs kept saying I'd leave tomorrow....and she

couldn't get flight for 10 days anyway-

airline had no hospital emergency policy! It was the one weekend

that my roommate was out of town for a 5 day grad school audition....

Anyway, I survived, but after 6 days of testing the best they could do was a

Magnesium deficiency...

since I take Mg supplements, and the IV they gave me at hopital kept wearing off

by evening, they didn't know what the prob was... of course the

prob kept returning when i left the hospital, but finally 1 of my nutritionists

seems to have hit upon a

solution

by trial and error....apparently taking iodine with the Mg keeps the level up...

since they ruled out thyroid at hospital, though, I suppose the iodine

must be a nutritional deficiency???(MDs don't offer a reason, just say come back

if it recurs, get regular Mg and K checks...Since my stomach began colicing

continuously in late Jan, though

I suppose

problem may be lack of absorbtion? (even on low salt diet for inflammation,

who in America doesn't consume iodine????) Someone once told me that ridges

running the length of your fingernails indicate

poor absorbtion of minerals/vitamins from food...don't know if it's true, but I

did notice this prob (and do on + off...) never had heart probs before, though,

makes one

think how quick nutritional probs can crop up!!!

by the way, i don't know what you do for inflammation, but have you tried

bromelain?

it is nutritional supplement that either mimics or induces (I'm not clear)

anti-inflammatory hormone. I use it

a lot because it has no side effects like NSAIDs (safe on stomach, no blood

clotting probs...).I find it extremly helpful

with systemic inflammation and sometimes helpful with more localized....

worth a try if you get lots of inflammation, though, because even if it only

works sometimes, I haven't noticed side effects

and have not heard of drug interaction issues either... I take it sometimes with

diuretic (+ used to take before advil) because I can use less of regular

diuretic/anti-inflam (sometimes don't need at all...)

Also it is supposed to be good for digestion, but i have not used it for that

purpose, so don't know....

thanks a lot for info ! Sascha

--- smginleyrn@...

> wrote:

>Sascha,

>I have been diagnosed with Crohns/inflammatory bowel disease, and I

>definitely believe it is related to my presentation of EDS, and although I

>can't get my GI doc. to agree, my primary definitely thinks it is the EDS. I

>have inflammation from the mouth all the way through to the rectum.

>Irriatable bowel syndrome is different, as usually no inflammation is

>detected on endoscopy, or colonoscopy, but the symptoms are very similar, and

>just as painful irregardless of what you have. If you have inflammation in

>the mouth, I would suspect you have it other areas in the GI tract, as this

>is not abnormal to have it in more than one area. Have you seen a GI doc?

>Have you had any scopes to determine what your problems are? CT scans did

>not show anything on me with this problem, actually never shows anything on

>me. The colonoscopy, and upper endoscopy is what showed the inflammation on

>me. I also was frequently nauseous, abd. pain constantly, and bladder

>irritation, and pain, and also gyn problems. It is interesting you mention

>endometriosis, as this can also be a definite cause of GI problems, and can

>be very painful, and cause a lot of problems. This also can be difficult to

>diagnose from tests such as xrays, sonograms, and Ct scans. You need to push

>for an MD to get to the bottom of your problems. Poor nutrition caused by GI

>probs, can lead to more frequent problems. Hope this helped you. Love, Sue

>Ginley

>

>

[Guest guest]

Barbara,

Welcome to CHARGEland officially! Glad you decided to jump in and introduce yourself!

I will answer your questions underneath where you asked them...check below...

(unknown)

I guess you could say that I have been a "lurker" these past few months but finally decided to post my own message. My son is almost 7 months old and has CHARGE. He was born with a tracheoesophageal fistula which was repaired when he was 12 hours old. has mishapen ears and a bilateral hearing loss. He's got a little low tone, unilateral choanal stenosis, had smaller genital (no longer thanks to hearing about a testosterone injection)and has swallowing problems. He also has beautiful curly brown, big brown eyes and an infectious laugh!!I just want to first of thank everyone for all your help...just reading your messages and hearing about families having gone through similar things has helped give me the strength to know that one day we too will get past this more difficult time. I also want to thank those of you who I e-mailed individually and who have given me advice on feeding/hearing/growth issues.Now that I've officially introduced us, I have some quesitions for anyone with experience...1) Have any of you had long term NG tubes in your kids and if/when did you put PEGs or G-tubes? Currently, still has an NG tube. We had been hoping that we coulod avoid a surgery and since his weight gain has been good and his reflux had been sort of stable, we were hesitant to "rock the boat" with a PEG.

We fed Kennedy via OG tube (same idea as NG except it goes in via the mouth and we removed it after each feeding and re-inserted it for the next one) for her first 6 months. At that time, we opted for the g tube as we felt the tube feeds would be ongoing for some time and it was increasingly difficult to keep the tube in and also her reflux was so severe that it needed to be addressed surgically at that point as well. 7 months is a long time to go with an NG tube, I commend you!

2) For those of you who put in PEGs, did the reflux worsen?

It did not worsen for us, as we had a Nissen Fundoplication done at the same time which eradicated the reflux for Kennedy. For more info on Nissen fundoplications, you can check out:

http://www.tofs.ndirect.co.uk/info_leaflets_nissen.htm

3) What ways have you been treating reflux? Currently is on Prilosec.

We had her on cisapride for the first months of her life until we decided to go with the Nissen fundoplication. We have been very happy with our decision to have that surgery done.

4) Have any of you found that putting rice cereal into the formula to thicken it slightly has helped reduce reflux?

It didn't help with Kennedy prior to her g tube/fundo surgery but I have heard of it working for less severe reflux.

5) Now my big question...eating. We just got back from seeing Marcy in Cleveland and did amazing! WHile there, he managed his secretions, ate puree and drank thin liquids with seemingly good results and a believed safe swallow. We just had his repeat vidoe today which showed a severe swallow problem, "no real swallow" and aspiration on everything. Needless to say, we are pretty concerned and want to know more about kids who have eventually learned to eat...any ideas? Advice?

Basically, we are still trying to give Kennedy tastes of things, she goes well for awhile but then takes a dis-interest in it and wants nothing to do with oral feeding. She did pass her last swallow study and we do give her pudding, ice cream, cool whip, etc, as much as possible but we are kind of at a stand still with the oral feeding thing. From what I can ascertain though, most do eventually learn to eat to some degree, be it pureed, soft textured, or the real deal...steak & the whole bit! It's a struggle for a lot of us - this eating thing!Mom to Kennedy 3yr old CHARGEr, 11, 10, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Thanks for all you help...

Barbara, mom to 7 months 3)"5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Barbara,

My grandson, Josh, is 11 1/2 months old. He had his Nissen and g-tube placed at 3 weeks. He couldn't have a NGT because of the atresia. He had an oral GT. So, with his reflux and aspiration, we quickly had the g-tube placed.

He has had trouble with weight gain, but is now 15 1/2 lbs.

Josh is on Zantac and seems to reflux when feeding but two bariums so he isn't--Funny!!!

He has had multiple episodes of "asthma-Like" problems. I informed my daughter to get an pulmonary MD appt. There is one here in Memphis, TN that deals with lungs and reflux that I found out about at work last week. She goes next week. The GI MD doesn't seemed concerned re: feeding "reflux-like" symptoms since the bariums are negative. I believe he needs a milk swallow and a delay emptying study. There are many ped GI md here.

Maybe we'll get somewhere with the other MD??!!!

Josh is a very happy baby--Here's a list of his features of Charge (by the way- the genetics MD said Josh does seem to have charge--does that mean he does??)

Choanal Atresia (narrow on Left sided only)

VII cranial nerve palsy

Swallowing problems-reflux and aspiration-requiring Nissen and g-tube

Left vocal cord not fully developed

Left Carotid Artery not visualized on initial MRI at birth

Heart Problem--PDA (MD states it has closed now)

Growth and Retardation Development--At 11months, sitting up and crawling on back!

Small Penis (but genetic MD said not too small)

Ear abnormalities--Misshappen. lower set

Just thought I would list them all .

Iris, mother and grandmother of Chargers, Kriste (age 28) and her son Josh (11months)

[Guest guest]

Barbara,

I hate to answer your question with a question, but I am still learning about all this CHARGE stuff. As you have probably read, we aren't even sure yet if my granddaughter, Jourdan, has CHARGE Association, but she does have many of the anomalies that go along with it. My question is, what are all of these tube feeding devices you all talk about. Right now Jourdan is being fed with a tube down her nose directly to her intestines. In the past weeks, she had a tube down her mouth because first the nose was blocked and then later because of healing from the surgery. During that time the tube was first place directly into the intestines, but worked it's way into the stomach. For a time she was being feed into the stomach without any problems. Does that mean that we will not have problems with reflex?

Again, I have so many questions, there seems to be no end. I am a little behind you as Jourdan is only 2 months old and still recovering from her first heart surgery. At this time we are not sure if she will go home before the second heart surgery or not. They are talking about around 6 months of age which would be 4 more months. Right now the problems seem so overwhelming. I can only hope that in a few years we will look back on this time and wonder why we were so upset.

I am including a picture with the email, hoping that all on the list will be able to see. One of the ICU nurses took it for us (they are all so great and caring) and it is the best picture that we have yet. Such a beautiful smile, don't you think.

I know I haven't supplied you with any information, but hope the best for you and . Thank you for listening.

Lynn (grandmother of Jourdan (possible CHARGE)[unable to display image]

[Guest guest]

I have no idea what this message says but isn't it beautiful to see families connecting like this?

Mom to Kennedy 3yr old CHARGEr, 11, 10, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

(unknown)

HELLO!!

Hi everyone my name is Pilar Ortega (cousin to Begoña a 5 months charger). I live in Spain, so my English is quite bad and it´s difficult to understand things that are said in www.chargesyndrome.com. I want to know, if it´s known, what causes charge? And if there is any association similar to charge syndrome foundation in Spain, so that I can tell my aunts to go becouse they don´t have internet, they don´t speak any English, and they don´t want to accept that they have had a charger girl. I know Susy´s page, about Sergito but if there are any others I´d like to know them. Thank you very much to every one

PILI

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

"5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Hello Pilli,

California Deaf-Blind Services has a paper on CHARGE in Spanish which I

could e-mail to you if you like.

All the best,

Jackie Kenley

pilar ortega villasana wrote:

>

> HELLO!!

>

> Hi everyone my name is Pilar Ortega (cousin to Begoña a 5 months

> charger). I live in Spain, so my English is quite bad and it´s

> difficult to understand things that are said in

> www.chargesyndrome.com. I want to know, if it´s known, what causes

> charge? And if there is any association similar to charge syndrome

> foundation in Spain, so that I can tell my aunts to go becouse they

> don´t have internet, they don´t speak any English, and they don´t want

> to accept that they have had a charger girl. I know Susy´s page, about

> Sergito but if there are any others I´d like to know them. Thank you

> very much to every one

>

> PILI

>

> ----------------------------------------------------------------------

> Get Your Private, Free E-mail from MSN Hotmail at

> http://www.hotmail.com.

>

>

[Guest guest]

HELLO JACKIE! I´m Pili, please I´d love to have that paper. If you can e-mail me it I´ll be very glad. Thanks very much. My cousin isn´t blind but she´s deaf so I´d like to have it, thanks again.

PILI

>From: Jackie Kenley

>Reply-To: CHARGE >To: CHARGE >Subject: Re: (unknown) >Date: Mon, 14 May 2001 10:45:52 -0700 > >Hello Pilli, >California Deaf-Blind Services has a paper on CHARGE in Spanish which I >could e-mail to you if you like. >All the best, >Jackie Kenley > >pilar ortega villasana wrote: > > > > HELLO!! > > > > Hi everyone my name is Pilar Ortega (cousin to Begoña a 5 months > > charger). I live in Spain, so my English is quite bad and it´s > > difficult to understand things that are said in > > www.chargesyndrome.com. I want to know, if it´s known, what causes > > charge? And if there is any association similar to charge syndrome > > foundation in Spain, so that I can tell my aunts to go becouse they > > don´t have internet, they don´t speak any English, and they don´t want > > to accept that they have had a charger girl. I know Susy´s page, about > > Sergito but if there are any others I´d like to know them. Thank you > > very much to every one > > > > PILI > > > > ---------------------------------------------------------------------- > > Get Your Private, Free E-mail from MSN Hotmail at > > http://www.hotmail.com. > > > >

[Guest guest]

HELLO ALISHA!

Your spanish is much better than my English. Thanks for answering. As I see it the syndrome it´s not a big problem, I have a beatiful cousin, but the problem is that my aunt and my uncle think that doctors are not right, and I´m sure they are, she has many of the charge diseases (creo que me he equivocado en esta frase). Í live far from them and I can´t see her very frequenly but I love to visit her and I think she likes me too. Please if you find anything about charge in Spain, tell me. becouse it´s really difficult to translate e-mails, and I´m recieving all your help but I feel bad becouse I can´t give any.

Thanks to ALISHA from Pili (cousin to Begoña a five months charger)

>From: "Peggy Steele"

>Reply-To: CHARGE >To:

>Subject: Re: (unknown) >Date: Mon, 14 May 2001 08:19:59 -0500 > >Hello, > >Pilar,... Me llamo Alisha, hermana de una "charger" de 9 anos. Para contestar sus preguntas (aunque a mi me parece que su ingles es muy bueno!) No se sabe que son las causas del sindromo Charge. Se sabe que es un gene (o varios) que estan alterados. >mi hermana es sorda, y tiene problemas de balance, nacio con labio leporino y problemas del estomago. No tengo ni idea si existe algun grupo o fundacion en espana. Este sindromo es tan raro. >A veces se asusta demasiado a ver su hijo nacer asi. Pero le digo que no es tan malo como se piensa. Quiero mucho a mi hermana, y es muy bonito tenerla aqui en la casa. > >-Alisha > (unknown) > > > HELLO!! > > Hi everyone my name is Pilar Ortega (cousin to Begoña a 5 months charger). I live in Spain, so my English is quite bad and it´s difficult to understand things that are said in www.chargesyndrome.com. I want to know, if it´s known, what causes charge? And if there is any association similar to charge syndrome foundation in Spain, so that I can tell my aunts to go becouse they don´t have internet, they don´t speak any English, and they don´t want to accept that they have had a charger girl. I know Susy´s page, about Sergito but if there are any others I´d like to know them. Thank you very much to every one > > PILI > > >------------------------------------------------------------------------------ > Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. > > > >

[Guest guest]

Thanks! I have actually heard of a neti pot, but I've never heard of a nebulizer

- what is it? I will tell my mother and either email any questions or have her

do

this directly... if she does it, her name is Ann Horowitz. thanks a lot!!!

Sascha

--- " Devocelle "

> wrote:

>Hi Sascha!

>I have always had intrinsic asthma, it used to be pretty bad, to the point of

hospitalization, but now it hardly ever bothers me, just occasionally it will

rear its ugly head (usually when I am pregnant). I have a few ideas on that, im

sure that she is using a nebulizer already at home, if not that is a good start.

What really saved my life when I had it so so bad, was something called a neti

pot. Talk about a wierd thing, but it works. A therapist at the hospital got it

for me and Im sure that it saved my life. If you are interested you can email

me and I will give you more information on it.

>

>My mother had endometriosis as well. She also had a total hysterectomy.

Although she hasn't been formally diagnosed, I am positive that she has EDS with

no doubts in my mind whatsoever. So far I have been lucky and I haven't had any

problems with endo.

>

>Kristi

>akhddevo@...

>

>

>

>

> (unknown)

>

>

>Hello again. Does anyone hav information on repetitve stress syndrome?

>Is it possible to develop this from the little movement of a subluxation that

occurs repaeatedly?

>

>My vertebra have always slid around a lot when i sit down, so i have always had

to pop them 1 by 1 back into

>place every 10 minutes or so when i sit. This is so much habit, i often don't

catch myself doing it except for the more extensive popping session when I get

up.

>

>but have been getting muscle inflammation (I went to ER because my lung was

being closed, felt like I'd dislocated a rib, and got worse not better over

course of

>day. They said it was a " strain " , but since I didn't do anything of note, I'm

thinking the damage must have come either from the little popping movement of

> " relocating "

>vertebra repeatedly, or from the " strain " of holding a sitting position...)

>

>I have had similar hot cramping sensations which recur if I repeat whatever

motion i had been doing, but none so severe.

>In past, usually wrist or fingers only. PT person said " tendonitis " for wrist,

but since it is a folding movement, not a pulling movement that triggers it, I

doubt he's correct...

>

>I also have questions about hiatal hernia. I have had severe cramps and tearing

feeling when i eat which has made

>it hard to eat much (or anything with fiber!!) and to sleep well since late

January. My MDs cannot figure out

>what the problem is, and nothing was visible on a cat scan done to rule out

ruptures when i was in the ER in Feb.

>Now an MD thinks it may be a hiatal hernia anyway because of fiber/bulk making

it worse and because walking and deep breathing sometimes seem to irritate it.

>My mother, younger brother, and also vaarious uncles and aunts have had hiatal

hernia, but not at all similar to what i have. Theirs have been visible lumps

near

>midline of body, and pain has not developed until LONG after they knew (could

see) problem. they could all more

>or less eat anyway. Mine is way over almost on my side (left), and also my

lower rib hurts to the touch. I don't

>think there are any visible lumps or soft spots. Has anyone heard of a hiatal

hernia that occurs on the side,

>is invisible from the outside, and is aggravated by eating large portions (1/2

cup or greater volume for sure),

>breathing deeply, swinging leg for walking, or pushing on that 1/2 length lower

rib???

>

>I am probably going to have to drop summer classes + go back to New York state

(where my parents live)to have surgery to see what can be done about this

problem.

>

>(I have a surgeon there, OBGYN, who would remove endometriosis at same time. He

removed the endo the 1st time, and it was a very smooth surgery...)

>I am

>wondering if anyone has heard of any other problems (than hiatal hernia) that

might effect breathing, eating, and walking/abdominal muscles?

>

>(I have hypermobility and organ LINING problems- possibly that mythical " type

VIII " , because my hypermobile maternal family have no soft tissue probs I've

heard of; my father's family problems are mostly limited to lung/GI tract and

dental/gum... but are very widespread!)

>

>I had an " injury " to a ligament(?) in this same area several years ago. I had a

cramp which apparently snapped

>an adhesion... and left me with an occasional, localized " mini- runner's cramp "

on that lower rib. A chiropractor later identified the cramp as related to an

>attachment point between diaphram and a rib... Does anyone know if such an

injury could eventually lead to GI

>tract problems like I have now? Would a hiatal hernia still be likely? (and CAN

hiatal hernias be undetectable at surface + overlooked on cat scan?)

>

>My mother has asked me to post about intrinsic asthma. Does anyone else have

it? Has anyone found any good treatments?

>(she says she had it all her life, but it has gotten worse since menopause.

" frozen " shoulder problems seem to be only part of the problem, and her MDs say

her lungs only work at 60% all the time...)

>

>Does anyone know of anything published about EDS and endometriosis? Women I've

spoken to tell me that endo is more

>common with EDS than in normal population, but I have not seen any statistics.

I have an aunt who had EXTREMELY

>aggressive endo which invaded her GI tract and produced stomach cramping +

vomiting +prevented her from

>eating every month... My OBGYN says endo doesn't usually enter into other

organs; since my aunts had to be removed,

>her MDs are certain hers did (and was " worst " in her bowels...)- could EDS have

influenced this? (she has had

>a total hystorectomy now, and says she can eat every month, and her other GI

tract problems are now treatable...)

>

>I had a birthday on Sunday (I'm 24 now!), but since it hurts to eat, I'm going

to make it up after I've dealt with

>this GI tract problem (and hopefully then won't be stuck sitting still so much,

so won't have the back inflammation...)

>Celebration is no fun if you can't eat well, sleep well, or breathe or move

around comefortably!

>Also, i'm moving and getting a new roommate on June 1st.

>(who i will live with less than a week before taking off for NY and surgery...)

>anyway, if i don't get around to posting between now and when i go to NY (my

parents' computer does not have enough memory for workable e-mail, they keep

planning to upgrade!), I'll talk to everyone after...

> Sascha

>

>

>_____________________________________________________________

>Proud member of

>

>www.Dragonmount.com

>The Largest -Wheel of Time- Community on the Internet!

>

>

[Guest guest]

Hi ,

Just a thought but does he have lots of loose BMs during the day? Our

daughter was constipated and would have bouts of trying to go with the

result being almost like diarrhea. She is now on liquid

calcium/magnesium and doing lots better. Regular BMs and no other stuff.

This may be completely different from what you are talking about! Just

putting my 2 cents worth in...all the best. This can make you crazy!

Take care,

Jackie in San Francisco, Mom to 22, nah 18 and just graduated

and 16

M Baker wrote:

>

> Hello everyone,

> Have any of you had a problem with your child having diarrhea? My

> son Jeff will be 17 in August and has suffered off and on with diarrhea

> for the last 4 years. I have quit giving him baths (he drinks the bath

> water), I control his sugar intake, and have taken him off milk products

> (he now get rice milk and soy products). He has not had a regular

> movement for a week now. I've been giving him Lonox to stop the diarrhea

> and to keep him from getting dehydrated. I called his doctor today and

> he is sending us to the hospital to talk with the dietitian. I guess

> that's a good first step but I was just wondering if anyone else has

> dealt with this issue. If so, please let me know what was tried, ruled

> out or whatever. Thanks in advance.

> Love and smiles

> in Idaho

> Mom to Jeff 16 3/4 yrs(CHARGEr), Steve 18 and just graduated, and others

> married with children of their own

> ________________________________________________________________

> GET INTERNET ACCESS FROM JUNO!

> Juno offers FREE or PREMIUM Internet access for less!

> Join Juno today! For your FREE software, visit:

> http://dl.www.juno.com/get/tagj.

>

> 5th International CHARGE Syndrome Conference, Indianapolis, Indiana,

> July

> 20-22, 2001. Information is available at our website

> www.chargesyndrome.org or by calling 1-.

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

>

>

[Guest guest]

Ellie,

I'm curious if this is the same Dr. B I know here in Atlanta. Where are you

from?

Lydia

mom to chrgr Kim 15, Alia 15, 17, and 20

E J wrote: Hi all

today is nicky's eval report of findings from Dr

Bernstien!! How coincidental that this happens 2 days

after my son (nicky) beat me up. the physical booboos

he did to me will heal but the psychological ones have

interferred with sleep. he has those " autistic

behaviors " which are getting more violent in nature. i

hope dr. b will confirm my gut instinct for the last 3

yrs and put him in a residential setting.

hi jeff--remember me Ellie??

sorry about my lower case but typing with one hand.

__________________________________________________

[Guest guest]

Ellie,

I'm sorry to hear about the violent outbursts from Nicky, we have been going

through some minor 3 yr old temper tantrum violence from Kennedy lately and it

is very hard to deal with. I hope you get the answers you are looking for from

the doctor.

Thinking of you,

Mom to Kennedy 3yr old CHARGEr, 11, 10, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

(unknown)

Hi all

today is nicky's eval report of findings from Dr

Bernstien!! How coincidental that this happens 2 days

after my son (nicky) beat me up. the physical booboos

he did to me will heal but the psychological ones have

interferred with sleep. he has those " autistic

behaviors " which are getting more violent in nature. i

hope dr. b will confirm my gut instinct for the last 3

yrs and put him in a residential setting.

hi jeff--remember me Ellie??

sorry about my lower case but typing with one hand.

__________________________________________________

[Guest guest]

Nadia,

You have found a good web site if you have IGAN. I also do not

have a lot of information about my IGAN condition and find it difficult to

get information from my doctor (or is it because what he tells me I do not

want to hear?). I have found this web site to be excellent in obtaining

information by watching other people's comments. Pierre, our moderator, has

also provided the best background information. I have difficulty with

different countries units of measurement. You use mg/dl, in Australia we use

mmol/litre but from what I know, your creatinine level is better than mine

so it would appear that you are not as advanced as I am. You may be lucky in

that it is progressing very slowly. Blood pressure appears to be the key to

stability and your BP medication is working OK. I also have puffy eyes

especially first thing in the morning. My nephrologist explains that is

because I have been lying down all night. One thing I do know, we are all

different and some people progress at different rates to others. In my case

(I am 56) I have known about my IGAN for just over 2 years since my

positive biopsy, but it is likely that I have had this condition for much

longer without knowing. I have had problems controlling blood pressure and

gout since 1985. This could be related in my case. Someone else on this web

site may have some comments to help you. It has helped me by just speaking

about my problem with people who have similar symptoms on this web site. I

usually log in every day. Doctors sometimes are reluctant to admit that they

really do not know especially to the patient.

Derrick

Sydney, Australia

(unknown)

> I am Nadia from Italy. I wrote in some weeks ago, then I lost your

> traces.

> I discovered to have IgA 10 years ago, for a real lucky situation,

> from my urine test. I had two biopsies cause the first was not

> sufficient to enlight the type nephropathy I was suffering from. I

> do not know how and, more important, when I fell ill.

> My creatinine values were in 1993 about 2 mg/dl. Since then I am on

> Enapren 5mg/per die. My values fell down on 1.4 creatinine and slowly

> turned to 1.6. Since 3 years they have stopped here, with 35-40

> creatinine clearance point. My Bp on my pill is 85/130.

> When they told me I was affected from IgA (tird stadium)few people

> and doctors knew much about it. I became able to sail in the web and

> looked for anything could be useful to my stillness and my parents'

> too.

> In these years I have continued collecting all the symptouses I had:

> from headache to pain in knees, from tiredness to puffy eyes and

> anemy. Only now I can relate all this to my disease.

> Doctors I am in cure (Bari Hospital) try to assist me in better ways,

> but I fear they are not always sincere with me (how many years could

> I live so.... " good " ....)

> I desperately searched for someone in Italy on the web who could

> exchange news with me on Italian centres and doctors and I am

> searching a foreign centre where I could be visited too.

> I always live with somewhat unknown could arrived

> nadia

>

>

>

>

[Guest guest]

One thing people might notice about having IgAN, especially after many

years, is that nephrologists sometimes may not call it that by name all the

time, and may be more concerned with the actual renal failure itself

(whatever the stage is) and preventing end-stage renal failure as much as is

possible. This doesn't necessarily mean that he or she doesn't know much

about IgAN. To a certain extent, pretty much all glomerular-type kidney

diseases look very similar, and the results and treatments are similar. The

goal is always to keep blood pressure better than optimal, and to treat any

symptoms that might appear along the way, such as might be caused by heavy

proteinuria. The more renal failure you have, the less it matters that it is

being caused by IgAN. Eventually, it gets to the stage where it's pretty

much all the same in the kidneys themselves. This is why by the time you

need dialysis, it's all just called end-stage renal disease.

Pierre

(unknown)

>

>

> > I am Nadia from Italy. I wrote in some weeks ago, then I lost your

> > traces.

> > I discovered to have IgA 10 years ago, for a real lucky situation,

> > from my urine test. I had two biopsies cause the first was not

> > sufficient to enlight the type nephropathy I was suffering from. I

> > do not know how and, more important, when I fell ill.

> > My creatinine values were in 1993 about 2 mg/dl. Since then I am on

> > Enapren 5mg/per die. My values fell down on 1.4 creatinine and slowly

> > turned to 1.6. Since 3 years they have stopped here, with 35-40

> > creatinine clearance point. My Bp on my pill is 85/130.

> > When they told me I was affected from IgA (tird stadium)few people

> > and doctors knew much about it. I became able to sail in the web and

> > looked for anything could be useful to my stillness and my parents'

> > too.

> > In these years I have continued collecting all the symptouses I had:

> > from headache to pain in knees, from tiredness to puffy eyes and

> > anemy. Only now I can relate all this to my disease.

> > Doctors I am in cure (Bari Hospital) try to assist me in better ways,

> > but I fear they are not always sincere with me (how many years could

> > I live so.... " good " ....)

> > I desperately searched for someone in Italy on the web who could

> > exchange news with me on Italian centres and doctors and I am

> > searching a foreign centre where I could be visited too.

> > I always live with somewhat unknown could arrived

> > nadia

> >

> >

> >

> >

[Guest guest]

Never heard of it. Can you explain more?

Pierre

(unknown)

> Hi All,

> I want ask about Urine Theraphy for kidney failure patient. please

> let me know if you have experience about that.

>

> thanks,

> Ade

>

>

>

>

[Guest guest]

brenda

the chart looks good , but on sunday today im on cd 10, and my temp went up

over the cover line do you think its possible to 0 on cd 10? last clomid was

frid, thanks love judy

[Guest guest]

Welcome to the group Amy. Glad you found us.

Pierre

(unknown)

>

> Greetings, I am new to this group. I was diagnosed with IgAN when I was

10. I am 16 now, and it just occured to me to look up a group on yahoo, for

those with IgAN. And lo and behold, they had one. My whole life I have only

none one other person with IgAN and that is my sister. I look forward to

conversing with others who can relate with me.

> sincerely, Amy Airheart

>

>

>

> ---------------------------------

>

[Guest guest]

Hi Amy

Welcome to the group. My son , is 17 and was diagnosed 2 years ago. If

you'd like to e-mail him his addy is NKB84@...

I'm sure he would like to hear from another teen with IgAN. Take Care

Debbie

amy airheart wrote:

> Greetings, I am new to this group. I was diagnosed with IgAN when I was 10. I

am 16 now, and it just occured to me to look up a group on yahoo, for those with

IgAN. And lo and behold, they had one. My whole life I have only none one other

person with IgAN and that is my sister. I look forward to conversing with others

who can relate with me.

> sincerely, Amy Airheart

>

> ---------------------------------

>

[Guest guest]

Hi Ronnie...I'm just meeting you here on the board. As you've been reading the posts I won't go into detail about myself. You probably know all you need to know!

I'll watch for more of 'you'.

God bless. Sher ipf 5-06

"Don't worry about tomorrow, God is already there"

(unknown)

Hi A, Z., Peggy, and Joyce and everyoneelse.....it's nice to be talking to all of you again. Just for your info., I, Ronnie am a 58 yr.old retired2nd grade teacher. I was diagnosed in 2004 and had toretire earlier than planned even though I had alreadytaught for 34 years. My husband, Jerome-whose name inon our email account also taught for 34 years. I havebeen lax in writing even though I've belonged for along time but have received such valuable informationfrom everyone. A.-you mentioned COPD is commonwith HP. Never has any of my doctors ever mentionedthis to me. They have me on prednisone, azathrioprine,acytelscystine, and a couple of other things. Allthey've really told me is that when I get a cold andit feels like it is going to my chest that I need toget on an antibiotic immediately, esp. because myimmune system is compromised because of the drugs I'mon. Oh and like eveyone else I have to lose weightwhich has been a problem for me my whole life. Iguess I had better do some research on COPD. Thanksfor the info. When I was first diagnosed they talkedabout a lung transplant however now my doctor thinksit unlikely especially if I continue to remain stable.I'm hoping the move to a lower elevation will help mefeel better, etc. I attend Pulmonary Rehab. 3 times aweek and in the two years I've been there I've made alot of friends with other patients and have beensaddened by the passing of 3 of them. It's difficultwhen that happens but at least I was blessed to knowthem for a short time. Thanks again for answering mypost. Ronnie__________________________________________________________Want to start your own business?Learn how on Yahoo! Small Business.http://smallbusiness.yahoo.com/r-index

[Guest guest]

Hey !

The phone call is twice a month on Thursdays at 7pm Eastern Time. Leanne posts the number a couple of days ahead of time and then a reminder the day of the call. It's always great to talk to folks, when I can remember that is! LOL

We don't have in person meetings of this group since we're all spread out all over the country. Some folks are lucky enough to have face to face support groups in their areas but not all of us.

My grandfather was from Anniston in northeast AL and my mom lived there for several years. I've visited AL several times and I think it's beautiful and no people aren't married to their relatives, living in trailers! LOL

Beth Fibrotic NSIP 06/06

Don't try to explain it, just nod your head.

Breathe in, breathe out. Move on. J. Buffett

(unknown)

hi ya my sweet friends,

I would like to know about this chat room in here u have every once in a while. I would also like to know about this phone call deal u have also.I live in a small town in Alabama so I cannot attend any of your meetings.Yes I am from Al, and no I don't live in a trailor and no I am not married to my kin.

May God bless u all

[Guest guest]

>

> Hey !

>

> The phone call is twice a month on Thursdays at 7pm Eastern Time.

Leanne posts the number a couple of days ahead of time and then a

reminder the day of the call. It's always great to talk to folks,

when I can remember that is! LOL

>

> We don't have in person meetings of this group since we're all

spread out all over the country. Some folks are lucky enough to have

face to face support groups in their areas but not all of us.

>

> My grandfather was from Anniston in northeast AL and my mom lived

there for several years. I've visited AL several times and I think

it's beautiful and no people aren't married to their relatives,

living in trailers! LOL

>

> I know where Anniston is and have been through there. Thank u for

the imformation. MAY GOD BLESS U

> Beth Fibrotic NSIP 06/06

>

> Don't try to explain it, just nod your head.

> Breathe in, breathe out. Move on. J. Buffett

>

>

>

> (unknown)

>

> hi ya my sweet friends,

> I would like to know about this chat room in here u have every

once in a while. I would also like to know about this phone call deal

u have also.I live in a small town in Alabama so I cannot attend any

of your meetings.Yes I am from Al, and no I don't live in a trailor

and no I am not married to my kin.

> May God bless u all

>