Jillian....Update/upperGI....questions???

[Guest guest]

Hi All,

Weel today was a hectic day when the babysitter called and asked me to come

get Jillian because of a fever of 103 and when I arrived, the rescue squad was

there. I freaked. Hey, I got my 1st ride in an ambulance. She had all the

routine tests, fever went to 104.2 and all they found so far was high white

cells in the blood..

Upper GI performed on tues....RESULTS...1/ an aberrant right subclavian artery

producing an impression on the proximal thoracic esophagus........2/ Large

volume gastroesophagul reflux to the level of the thoracic esophagus

So here she is 8 months old, diagnosed with SILENT ( severe) REFLUX.....Did I

not question this when she was 2 months old and ALL the docs said an upper GI

was instant pictures and it would not show reflux?????? BULL CRAP !!1 I am not

even a professional and I saw it clearly on the screen... so why wasn't this

diagnosed 6 months ago????....The pulm wants to put her on Zantac 2 x's a day

and here's a question... they want to put her on Cisapride also but before

that they want her to have an EKG and if it's ok, put her on cisapride for 5

days then do another EKG and if it's ok still, keep her on it. WHY the EKG ???

Even my ped doesn't understand why the pulm wants to do all that.

Also, regarding hearing and ear infections.... Jillian has bilateral tubes yet

still gets infections constasntly...the doc says when you have tubes that you

only use ear drops and not oral antibiotics ? Is this so? Then why do they

keep coming back ? Anyone have their child on a preventative

antibiotic?.......Abotu hearing, you always hear CHARGE kids have hearing

loss.... can they have an opposite defect and their hearing be TOO

sensitive.... I swear Jillian would jump if you dropped a pencil on the floor.

With around, she jumps ALL the time because he's a terror..

Anyone else have a child with the impression on the esophagus? Anyhting need

to be done about it? Ped says may need to see a ped. surgeon but the pulm.

says it's nothing.......

Sorry to ramble so long but a lot of light has been shed on Jillian lately and

I need advice. Thanks in advance.

Foley, Mom to 3, , CHARGEr in heaven and Jillian my 8 mo

CHARGEr that confuses the heck out of us!!!!

[Guest guest]

Dear ,

Concerning Cisipride and an EKG, there is a FDA Warning out on Cisipride (it

has to do with the heart and alot of other things) and that is probable why

the doc wants an EKG before and after. If you want the information on the

Warning, let me know and I'll send it to you. My son Tryny was on it " until "

I read the warning. I called my son's cardiologist and pediatrician

immediately and we all agreed to take him off of it

(because of his heart - he's already had 2 open heart surgeries and has about

3 more to go). But his developmental pediatrician doesn't like the fact that

I took him off - so it boils down to one opinion verses another.

As for ear drop antibiotics when you have tubes, the ENT's prefer it but the

pediatricians don't always agree. My grandaughter has tubes in both ears and

still gets infections from time to time, so my pediatrician gives her both

oral and ear drop antibiotics

Again, if you want the warning on the Cisipride (also called Propulsid), let

me know and I'd be happy to send it to you. My pediatrician said the warning

has ben out for awhile but not all docs have really read it.

Debra

mother of Trynton

[Guest guest]

Dear ,

I'm glad to see you back.

It's late tonight and I just barely have a minute to respond to all you have

been

experiencing lately, but I felt I really wanted to let you know that YES indeed,

my daughter, Kendra had an impression on the esophagus (and trachea) due to what

at first looked like an aberrant subclavian artery but which turned out to

actually be a double aortic arch. Anyway, the impression was visible on x-ray

at

two months of age but was not appropriately diagnosed until we changed hospitals

and had a new team look at the issues. Kendra's double aortic arch surgery

(about her 20th of 30 surgeries) at age 2 allowed her to be de-cannulated by age

3 from her trach and over time she has been able to have the stomach tube

removed. Anyway, I just wanted to let you know of something similar to what you

have just been told and I'll look up the reports to see if there is any

information that might be similar to Jillian. We were so incredibly grateful to

get that surgery done because it opened up new worlds in breathing and eating

for

Kendra. I sometimes wonder what might have happened had we not found the

remarkable doctor who spent the time to figure out why Kendra couldn't eat and

breathe. When I drive by the hospital where Kendra first saw that doctor I

still

get really emotional. Since Jillian eats and breathes fairly well most of the

time I'm just hoping that her situation is much milder in the esophagus

impression. Kendra's esophagus looked like a hairpin curve prior to the

surgery.

About the ears, I really suspect many of Kendra's early ear infections were

related to the reflux. We most often use topical drops now for Kendra's ear

infections, but we also use oral antibiotics sometimes. I know doctors are

trying to cut down on the usage of oral antibiotics due to bugs becoming

resistant, but it is NOT true that oral antibiotics are not used when a person

has ear tubes. Lately since Kendra still has ear infections, (and tubes)

several

friends have suggested to me that I try a naturopathic doctor because they have

a lot of success often dealing with ear infections without antibiotics. Anyway,

if we try that approach I'll let you know.

Michele, HAPPY BIRTHDAY to Aubrie!!!!!!! What a milestone. I hope she is

enjoying eating!

Everyone else, I've been reading everything but haven't had much time lately to

respond as I would like to. So, hello everyone and welcome all the new people!

Mom to Kendra, 12 CHARGE, ALexander, 18 and Camille , 20

Portland, OR

[Guest guest]

Debra,

Casey sent me the address for the website. So I am going to check it now.

Thanks Casey !!!

Foley

[Guest guest]

:

is on Zantac twice a day for reflux, it cuts down on the acidity of the

reflux, doesn't prevent it from refluxing. She was on cisapride (propulsid)

for a little while, it makes the food go through the stomach faster. She

still spit up the same anyway, so she didn't stay on it very long. Several

people on this list have been posting warnings about cisapride, I don't know

what for, but you should definitely look into side effects.

Anne Vanderbloemen mom of 20 months CHArgE

Madison Wisconsin

[Guest guest]

,

They are not going to do a nissen on Jillian, but on Dec. 22, she is scheduled

for an EKG for a baseline before they put her on cisapride. I discussed all

the warnings with the pulmonoligist and they said this is the route we are

taking. After 5 days on the meds they will do another EKG to see if it

affected her heart. They said we have no other option than cisapride at this

time. She isaalso on Zantac and today the ped. called in a steroid for her

wheezing and asthma??( 4 day dose..the first taste, she puked her entire lunch

and the steroid up but handle it when I gave it again )

[Guest guest]

,

Are you talking about the liquid Prednesone ?? Man that

stuff is awful. was on it from 3 months til almost

three years, more on than off, and he could not handle

the liquid stuff. The first time they gave it to him he

choked so bad he aspirated it and ended up in the hosp

with pneumonia. What we did from then on was get the

pills, crush them and give them to him on a spoon with a

little breastmilk or formula, after he was on solids we

crush it up and put it on a couple spoonfulls of baby fruit,

ice cream or pudding. Also, just a warning, try not to get

her exposed to chicken pox for quite a while after the

steroids, chicken pox and steroid use are not a good

combo. was given the chicken pox vacine as soon

as he could handle it due to all the steroids he was on for

so long.

Casey

charge@...

minnow@...

Mom to Dawn 20, Ken 9 ADHD, and 6 CHARGE.

Cobb California

ICQ UIN# 728514

ICQ Pager http://wwp.mirabilis.com/728514

[Guest guest]

Casey,

Yes it's the liquid steroid. She hates it. Never knew there was a pill. It's

only for 4 days now but if she needs it again, I will ask for the pill.

Foley

[Guest guest]

,

The 104 fever wasn't all. She was having difficulty breathing ( rib cage

showing ) and was lifeless. That's the real part that scared the sitter was

because she was VERY lethargic. She looked more sick than I have ever seen

her. You know how they say depression can cause physical illness? Well, I have

not once called the doc since I have been off work. It was a bi-weekly call at

least before. Jillian must have been depressed that Mommy was leaving her

because she's a doll baby now. ( Knock on wood ) I know my ped must be walking

around feeling a void in his life and can't quite put his finger on it and

when he sees me again, he will realize the void was a phone call from " that

Foley woman "

Foley

[Guest guest]

<< I know my ped must be walking around feeling a void in his life and

can't quite put his finger on it and when he sees me again, he will

realize the void was a phone call from " that Foley woman "

Foley

>>

Hi ,

I know what you mean. Our pedi is like a close personal friend. At a visit

recently (for one of my foster kids) he looked up from the chart and said " Is

there really anything I need to tell you, that I haven't told you at least a

couple of times? "

He knows that if I have a question or concern I will call him. And with 5

kids including a very active CHaRGEr, I tend to call there frequently. LOL

Janet

Wife to Matt

Mom to & (CHaRGEr) 6 1/2, nne 20 months, and

Mom to 6 mnths, and 15 months.

Weymouth, Massachusetts

[Guest guest]

,

I totally believe in the depression causing illness. When I was an infant, my

parents took a trip out of town for 4 days in order to get their US residency.

My mom tells me that I was sick with a very high fever throughout the entire

time they were gone. When they returned, my fever miraculously disappeared!

Ana, mom to , 5 1/2, CHARGE, and Jordy, 3

Miami Beach, FL

[Guest guest]

In a message dated 12/13/98 6:40:26 PM Eastern Standard Time,

JFoley6163@... writes:

<<

The 104 fever wasn't all. She was having difficulty breathing ( rib cage

showing ) and was lifeless. That's the real part that scared the sitter was

because she was VERY lethargic. >>

,

Yikes!! I'd be calling 911 too if I ever saw a child in that much respiratory

distress. Thanks for clearing it up for me. I'm glad she's doing better at

home. Maybe Jillian was having an allergy problem or the sitter cannot keep

Jillian upright as much as you can at home w/ individual attention. Either

way, it is hard to give up a job you love (I did it too w/ lots of thinking

and regret at the time). Sounds like Mom is what Jillian needs now.

Take Care and Happy Holidays!!

(Destiny 6 on Jan 1 CHARgE, Zachary 3 1/2)