Sue

[Guest guest]

It depends on how thin your child is and how much subcutaneous (read: fat)

tissue there is. You want the needle to pierce the skin and its immediate

layer, but not go so deep that it goes into the muscle below. Most of the

time, the skinny kids get the very short (6mm) needles. The gauge of the

needles (i.e. 19G) has to do with the bore of the needle, or how big it is

on the inside. The larger the bore, the smaller the numbers are (i.e. 19G

is larger than 21G), the faster the flow, too, so you wouldn't necessarily

want a smaller needle bore as it would slow down the infusion.

I hope this helps!

Mindy

I

> also wondering if I need to try the smaller needles?? How do you know if

> you

> need a smaller one?

>

>

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>

> _____

>

> From: [mailto: ] On Behalf Of

> K

> Sent: Sunday, January 16, 2011 9:53 AM

>

> Subject: sue

>

>

>

>

>

> Yes, that is what we use, it is called IV3000 and it is waaaaaaay better

> for

> sensitive kids and holds the needles in place absouletly perfect!! it is

> clear like Tegraderm, but way better, also it is tricky to get the hang of

> at first so if you try it, order extras, you have to remember to order

> enough for each site (as you throw away the film that comes with the

> needles) and for the Emla sites. It is way better and as Mindy said,

> always

> have one hand holding the skin in place as you use the other to go around

> and loosen the tape, once it is completely loosened all the way around we

> pull the needles straight up and out

>

> Makenzie 10 CVID, Asthma, Allergies, Reflux etc..etc...

> 21

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[Guest guest]

Hi Sue, Ok, I am going to go down the line here... so look in-between!

Carolyn

 ________________________________

From: Sue Stromberg <strombergrn2000@...>

  I'm also going to call the insurance company and see which

physicians I can see and also call their offices....  

  --->Starting with Insurance. what kind do you have??  You can go anywhere to

anyone really, you are just going to have to fight for it.. (maybe).  Emails for

specialists as available. They are a different sort use the email!!.  Depending

on your relationship with your Ped. Doc. you can ask him/her to help you in this

cause.  I was tipped off early on, that if you have a child with some special

needs, get a ped that will talk to you.  So I switched into a small group

network.  ( I have Healthnet HMO) then my pediatrician REFERRED me to the

specialist of my choice ( from my research) this is where we started.  My

insurance balked.. but that was ok, because of the nature of the rarity.. we

just moved slowly forward. More later..<---  

 http://tinyurl.com/7hs4c5h Dr. Rosemurgy arosemurgy@... is surgical

director of the Digestive Disorders Center at

Tampa General Hospital. He holds the Vivian Reeves/Joy McCann

Culverhouse Endowed Chair for Digestive Diseases and Pancreatic Cancer

at USF. His research focus and clinical interests include achalasia,

portal hypertension, GERD, cholangiocarcinoma, and pancreatic cancer. He has

published more than 250 peer-reviewed papers in his areas of

expertise.

Here are my questions... my daughter is scheduled next week for a

manometry... however, if I do go to Tampa to see one of those docs

(which I will), will they want to repeat the test or will they just

accept the results from my doctor here?

-->We had only one, done at another location. But took the reports with us, it

only took Dr. Patti a moment to look at the manometry and make a determination

and see what he needed. The manometry is a tricky little test because it is so

uncomfortable. You need a good good good tech who has done this on children

before. They NEED to be compassionate. She will more than likely have to bring

the fluid back up.  Do not hesitate to ask!! Do NOT hesitate to push.. If it

isn't working.. SAY STOP!!  Talk about it with the tech ... BEFORE... make them

tell your daughter exactly what is going to happen.. A frame of mind is

paramount. Remember that Lamaze class and the breathing for childbirth.. use it

with her.  STAY with HER.<--

 

 I

have to get the biopsies back, but the GI doctor was pretty sure from

the upper GIs and endoscopy where she had no peristalic waves, that its

achalasia and that she will need surgery.

-->They cannot tell from an endoscopy what the peristalsis or pressure readings

are at the different locations in the esophagus. Did you get the pictures of the

endoscopy?  They always take the biopsies.  Did they make it through the LES to

the stomach?

Where is the Barium Swallow Study?? This is the easiest and the most important

test.  Ask to watch this study.. tell them you want to watch it..  Know that she

will have to bring the barium back up a few times. <--

 

is there a way to make food and

eating secondary?  

-->Survival has become primary, getting nutrition is as primary as it gets.. in

fact at this point it is everything.. it will become the all in all. <--

 

So, because my daughter already hates ensure, etc.. I thought maybe I

could get her to eat like 6 food-ice-cubes every hr and that way she

could get better nutrition.

-->You have to try anything, everything.. whatever works. Here's the deal. Her

esophagus is like a pair of pantyhose. At the heel is the LES to the stomach. 

Ensure... dump it.. I had cases of that stuff. it just came right back up. If

you go back to the message boards you can query methods in messages that people

have used to get " some " of what they eat to go down..  It's like this .. I at

3oz of food, and 1 oz went through.. along with 16 oz of fluid, like water,

bubbly soda. Some people like the heavy dense foods, weight helps to push it

through. As a mom, I watched him eat some, fill up the tube go to the bathroom

try to force water in, some would push through the LES the rest he would bring

back up... and then start again.. a meal.. survival eating would take about an

hour.. He lost 83 lbs in 5 months..

As far are regurgitation, so it sits until it gets thin enough to

pass through?  So, it can regurged then

 because there was no more room in her esophagus?

--> There is no acid to break the food down in the esophagus. It doesn't get

thin. when the LES opens the food may slide through. Meanwhile it may begin to

ferment and break down just above the LES and cause irritation in the esophagus.

Before she goes to bed, she should make sure her " E " is empty. ...Empty

it...Aspiration Pneumonia is a great concern.

 

So this is my question... if her LES is essentially closed, how long

does it take liquid to drip through to the stomach?  I know everyone is

different.

--> No way to know. It probably continuously drips like a faucet. But the LES

opens and closes on occasion too. <--

 

How much is too much food/liquid that would dilate her esophagus even more? 

6oz, 8oz...

--> Only she can know this. Think this way.. if you want her to get 8oz of

" energy " she may need to consume 24oz of food, she may bring back up 16 oz, and

get the 8 oz. This is only an example.. <--

 

Does this really matter, meaning, is she just going to be sensitive to most

foods? 

--> Food is going to become her worst enemy and her most loved desire.  It is

not the food she is sensitive to, it is the mechanics of her digestive system

gone awry.  She is gonna hate the sight of Ensure forever and ever.. This is

usually a GI doc's first recommendation and usually the worst!!  <--

 

I know this is going to be trial and error.

--> Absolutely!! <--

 

I'm sure I'll find this when I do my searches, but how about anti

depressants? Will that help her terrible stomach, neck and shoulder

pain?

--> Identify the pain source!  Has she had the endoscopy?  Has she had her Gall

Bladder checked? Is this acute spasms? Is it not just Achalasia, but is it

something even more? 

All the more reason to get to a specialist.. the best of the best.. no matter

what.. !! <--

 

Be sure not to put her in situation that she is under peer pressure to eat. If

she is in public school, be sure someone is not misinterpreting her INABILITY to

eat as some thing " psychological " ... Protect her at all costs... Affirmation is

important!! BE HER ADVOCATE.. IF YOU CANNOT BE HER LION, FIND A SISTER, MOTHER,

AUNT, FRIEND WHO WILL!!  Take someone with you that can hear with out their

heart but with their HEAD!! 

Hope this helps

Carolyn, mom of Cameron

myo'd and fundo'd in 05

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