Ports

[Guest guest]

Pam, It’s been a rocky road……I just don’t even know which way to

turn…..Haven’t called Dr. S’s office……I really like this new

hematologist at the U of Minn……He calls and asks how I am and then how

is . It looked like his mouth was better, but now it looks like

he’s getting sores on his tongue…..Haven’t had the nerve/energy to call

medical services yet today to see if they approved his appt next

week…..Will do that once I get him down for a nap.

I don’t know which way we are going…..just feel like it will be bad

news, I’m always such a pessimist……..but how can I not worry, none of

this is following a “normal course” . His rate of infections remain

elevated, but not requiring hospitalization yet at this point, but I am

also much better/more proactive with oral rehydration, etc so that is

probably helping. I think he is doing better on prophylactic

antibiotics but I am really concerned about the recurrent herpes. Dr. S

wasn’t much impressed with that and made me feel like it was more of a

nuisance than anything to be worried about, but the more I read, the

more worried I get…..Maybe the answer is just not to read and put as

much of it out of your mind as you can!!!!!!! Ha ha, I don’t think that

will ever happen with me….Anyway, thanks for the support. I’m coming to

work tomorrow…..need to call and let her know I can’t find the

keys and will she make me a new copy….I think Jake hid them and I can’t

find them. Have cleaned every drawer/looked in every jacket pocket etc

and they are no where to be found. I was sure they were in my car and I

cleaned that out too…..Oh well, Hope you and Rebekah get over this

nasty cough…..

RE: Ports

Pam you are right. You do NOT want to use a regular needle into a port.

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.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: HYPERLINK

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[Guest guest]

" what is your daughters t cell dysfunction????? "

-

Our daughter had zero (I mean zilch, nothing) T-cell response to antigens last

year. This was done at Children's Hospital Los Angeles (same lab that did

Vetter " boy in bubble " ). Of course, when we changed to our current hospital, no

one would take the results seriously. Crazy huh? Our daughter was being nursed

and on IVIG and looked great (95 percentile)...so her labs did not match the

kid. Well, except for the fact that she had thrush and sepsis at one point from

c.dif.

Next, our immuno wanted a repeat study of T-cells (numbers and function).

T-cells kept dropping (like in half!) and lymphocytes/neutrophils also dropping

in absolute numbers. Ended up going to hematologist b/c our gen peds doc

thought she might have bone marrow failure. But, after her flu shot (two of

them) her WBCs went up a bit. At one point, a skin test was done and she

showed < 1 mm response to everything which was virtually no cellular response.

Okay, so, about the T-cell repeat study...It was sent to Utah (you would think a

major research facility would be able to do the studies in house---nope). So,

all 20 cc of it (and our docs blood for comparison) were sent out to ARUP in

Utah. ARUP LAB HAD THE WRONG TEST CODE IN THEIR OWN BOOKS AND THEN DESTROYED

THE BLOOD WITHOUT RUNNING ANY TESTS OR CONSULTING US! I am still ticked. We

waited three months and then I had to figure this out. Everyone at UCLA was

perplexed and now our case is used for QA. But, nothing has changed over there.

Same old same old...

Then, we ended up taking our daughter to Duke. Our general peds doc thought she

might have SCIDS and we wanted answers once and for all...particularly since

SCIDS is a medical emergency. Studies were run. Her T-cell function improved a

little and was upgraded to " variable " response to antigens. Still, her T-cell

counts are dropping and she had " moderate lymphopenia " .

I am not sure how she is doing on the NK cell area and really need to ask our

immuno next week.

We don't know exactly where she is at today and are going to follow up soon.

Doc does T- and B-cell subsets in house but they don't provide much info.

Are you considering another opinion? Sorry if my story is discouraging. You

will get answers but it definitely takes a ton of work and advocacy...and I know

you are doing it. I read, somewhere, that T-cell dysfunction can contribute to

viral load problems. Sounds like you are dealing with this. So sorry.

Feel free to write me directly.

Schatz <lmschatz@...> wrote:

, what is your daughters t cell dysfunction????? That is what we

are now looking at with , especially his NK cells etc……..I’ve been

told that he has low t cells, by the first hematologist…..The next

immunologist said that wasn’t true….and U of Minn said his numbers were

okay and did a bunch of tests and now we are going back for some more

specific testing…….Just wondering if you can give me a heads up as what

to expect….I am really starting to get scared. doesn’t seem to

get bacterial infections, just major viral infections, and now with the

finger infection and loss of the nail coupled with the recurrent

herpes…………Time will tell and my patience is thin……It seems like no one

else really has what we are going through and I know a lot of other kids

are sicker…..but I just want to know what’s wrong and what to do to fix

it if we can or what our treatment plan should be. I’m tired of dealing

with incompetents when my primary ped isn’t available.

--

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[Guest guest]

" prophylactic antibiotics "

My daughter did not do well with antibiotics. It contributed to her mouth

ulcers. I know there is not much you can do here if depends on them, but

I thought you might be interested in our case. Obviously, this is a

cost/benefit thing. So sorry you are going through this.

Schatz <lmschatz@...> wrote:

Pam, It’s been a rocky road……I just don’t even know which way to

turn…..Haven’t called Dr. S’s office……I really like this new

hematologist at the U of Minn……He calls and asks how I am and then how

is . It looked like his mouth was better, but now it looks like

he’s getting sores on his tongue…..Haven’t had the nerve/energy to call

medical services yet today to see if they approved his appt next

week…..Will do that once I get him down for a nap.

I don’t know which way we are going…..just feel like it will be bad

news, I’m always such a pessimist……..but how can I not worry, none of

this is following a “normal course” . His rate of infections remain

elevated, but not requiring hospitalization yet at this point, but I am

also much better/more proactive with oral rehydration, etc so that is

probably helping. I think he is doing better on prophylactic

antibiotics but I am really concerned about the recurrent herpes. Dr. S

wasn’t much impressed with that and made me feel like it was more of a

nuisance than anything to be worried about, but the more I read, the

more worried I get…..Maybe the answer is just not to read and put as

much of it out of your mind as you can!!!!!!! Ha ha, I don’t think that

will ever happen with me….Anyway, thanks for the support. I’m coming to

work tomorrow…..need to call and let her know I can’t find the

keys and will she make me a new copy….I think Jake hid them and I can’t

find them. Have cleaned every drawer/looked in every jacket pocket etc

and they are no where to be found. I was sure they were in my car and I

cleaned that out too…..Oh well, Hope you and Rebekah get over this

nasty cough…..

RE: Ports

Pam you are right. You do NOT want to use a regular needle into a port.

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.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: HYPERLINK

" /messages " g

roup//messages

_____

[Guest guest]

In a message dated 9/9/2005 1:59:39 P.M. Eastern Daylight Time,

nxakmo@... writes:

the no treatment prior to a procedure and the being awake during really

scared me. I hope you will not let them do it while she is awake.

Actually she is going to be one week late for her IVIG. They cannot access

her veins any longer. She was recently in the hospital for dehydration and

they could not access her anywhere at all! We are talking legs feet nowhere!

They even called surgery in to try and she wouldn't even try. She said she

wouldn't use her for a pin cushion. She said if she was going to have surgery

she

could get her because the stuff they use to put them to sleep pumps up the

veins. So, I am going to call and tell him that. They will never get a IV

started if they don't. Plus that would be much too scary I would think. I want

her

put to sleep! Thank you so much.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

,

One other possibility not mentioned previously is a central line. This,

too, is placed surgically, and no " stick " is necessary for use. Some

doctors prefer this to ports for very young children, such as your daughter.

There are pros and cons to each access route, though. Some diagnoses or

scenarios may lend themselves to a particular type of administration.

Costs associated with the different methods of IgG administration vary

greatly by insurance companies. Some insurance plans have a prescription

plan, others consider IgG administration under a major medical plan. Some

insurance plans may insist on a nurse case manager to help sort out exactly

what is required. It's important to understand your insurance " contract "

very well in the event IgG is prescribed.

Antipov

mother to , 4 years old, X-SCID, 2 BMTS @ Duke, normal T cell

function, SCIG weekly

[Guest guest]

what is considred a central line?

Cassie

and Vlad Antipov wrote:

> ,

>

> One other possibility not mentioned previously is a central line. This,

> too, is placed surgically, and no " stick " is necessary for use. Some

> doctors prefer this to ports for very young children, such as your

> daughter.

> There are pros and cons to each access route, though. Some diagnoses or

> scenarios may lend themselves to a particular type of administration.

>

> Costs associated with the different methods of IgG administration vary

> greatly by insurance companies. Some insurance plans have a prescription

> plan, others consider IgG administration under a major medical plan. Some

> insurance plans may insist on a nurse case manager to help sort out

> exactly

> what is required. It's important to understand your insurance " contract "

> very well in the event IgG is prescribed.

>

> Antipov

> mother to , 4 years old, X-SCID, 2 BMTS @ Duke, normal T cell

> function, SCIG weekly

>

>

>

>

>

>

[Guest guest]

A port is less of an infection risk b/c it is covered with skin and has to

be accessed---- a central line hangs out of the body-and thus more of an

infection risk b/c it is always out-- you still have to clean everything

prior to accessing it-but because the line is out of the body, it just makes

it easier pick up germs.

Peace Be With You,

~Pattie~

Piedmont Triad, NC

Mom to , age 12 & healthy, , age 9, Shwachman-Diamond Syndrome

and ph, age 8, Shwachman-Diamond Syndrome

Our family website: www.shwachman.50megs.com

_____

From: [mailto: ] On Behalf Of

Cassie

Sent: Wednesday, March 08, 2006 9:55 PM

Subject: Re: Re: Ports

what is considred a central line?

Cassie

and Vlad Antipov wrote:

> ,

>

> One other possibility not mentioned previously is a central line. This,

> too, is placed surgically, and no " stick " is necessary for use. Some

> doctors prefer this to ports for very young children, such as your

> daughter.

> There are pros and cons to each access route, though. Some diagnoses or

> scenarios may lend themselves to a particular type of administration.

>

> Costs associated with the different methods of IgG administration vary

> greatly by insurance companies. Some insurance plans have a prescription

> plan, others consider IgG administration under a major medical plan. Some

> insurance plans may insist on a nurse case manager to help sort out

> exactly

> what is required. It's important to understand your insurance " contract "

> very well in the event IgG is prescribed.

>

> Antipov

> mother to , 4 years old, X-SCID, 2 BMTS @ Duke, normal T cell

> function, SCIG weekly

>

>

>

>

>

>

[Guest guest]

>

> what is considered a central line?

> Cassie

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

~~~~

A Central Line can be a Port-a-cath/Mediport. It all depends on who

puts it in & what they preferred to call it. This is the one that

every one is talking about getting if your child HAS to be stuck

several times for an infusion or. This takes the " sting " out of

being stuck all of the time & it is less traumatic on the younger

child or phobic person. This is placed surgically. It can be

accessed with a non-coring needle. It also has to be removed

surgically when it gets infected & the Dr. sees that IV antibiotics

will not clear teh infection. It lies just under the skin of the

chest wall. Looks like 2 nickles stacked on top of each other. In

a really thin person, it can be seen. But a more " meatier " person,

it may not be a easy to see.

A Central line can also be a Broviac. This line also is placed

surgically. It is threaded through the chest wall & in main vein to

the heart. This one IS more prone to infection because the infusion

end is always out of the chest wall. You have to change the

dressing at least once a week if not twice. If an infection takes

over, the Dr. can remove this one in his office or as with a child

like Blake, will surgically remove it(My 14 yr. old has a Broviac

due to teh infection rate of Port-a-caths.....he has lost 7 of them,

but not all to infection. Like Becky's little one Blake managed to

flip his upside down & back wards!!!!) Blaek has had his Broviac for

16 months now....few problems, but they cleared with a good dose of

IV meds!!!

A PICC Line. This is threaded through the arm & can be left in for

as long as it stays working!! It is done under fluoroscopy. No need

to be put to sleep. With Blake, they just numb his arm & through

vein study, they found the best place to put the line & thread it up

under the subclavian & leave it there. This line can be pulled

out " wherever " . It is easy for the meds. to push it out if the

person " clots " easily. Blake had one PICC line last for 9 months.

Then once it got removed & he had to have others placed it was hard

to keep them in him. Mostly because he does have a very Rare Blood

Clotting disorder.

Each line serves the purpose of the IVIG, blood work to be done, IV

meds & fluids. But YOU have to decide if you want a foreign object

to be in your child. It was hard for & I to make this

decision. But when it became reality that he was gonna need long

term therapy for IVIG & antibiotics. We checked out all options. we

have been down the road with all of them. We also have been in the

seat holding Blake as he was being stuck for the 10th time & they

still could not get a line placed, Ali the while hearing him beg for

the nurse to STOP. We have been the parent to hold him &

whisper, " soon it will be in & you can have all the surprises you

want!! " < to him & calm him when he was just too darned tired to

fight any more been the parents who had to hold him down. we have

been there when the nurses had the look of dread on their faces when

they leaned that his " central line " had to come out due to

infection, a blood clot or horse play. we have been the parents who

had to tell the 4, 5, 6 7, 8, yr. old that his line is infected &

they need you to go in the hospital to treat it.

I have been there to see all of these tears. I have seen the joy on

Blake's face when a line has been successful with each infusion or

blood draw. I have been there to hear this child beg to God that he

doesn't get stuck too many times (he had gotten up to 12

sticks!!!). " Please Please. God let it be in on one shot. I was

also there when my child gave praise to God because it got in on the

first or 12th time. I have been there when each line has been

placed & he would boldly & gladly tell his nurses, " I have a NEW

line we CAN use to day!!! " I heard him & beamed with such gladness

that he did not get angry with the nurses about having to stick him

sooooo many times(Yes he did his share of fighting). I was also

there the day they had to stick him 12 times. It took 4 nurses. I

heard him encourage the nurse, telling her, " You can do it " & the

disappointment that ran across his face when she didn't get it in &

the encouragement HE gave when she told him, " I Can't get it today "

He always said.... " Well, you can't say you did not try!!! You did a

good job!!! " I have also sat & watched in amazement when he just

sat still & did not move just so the nurses could get the IV in on

the first try. He can stare a needle in the eye & not blink as it

enters the arm so it can pour into him the life giving infusions!!!

So, I am ever grateful for the different Central lines that Blake

has had.

This is why, when you decide on placing a line, you & your family

all talk it over & make sure anyone who is going to be taking the

child to Infusion, is there to learn on what should or should not be

done with a Central Line. This could be your child's best friend for

the next some odd yrs!!!

Just my .02cnets.

S. Mom to Blake 14 CVID with Complete T-Cell

Dysfunction....lots of other issues, but it is getting late around

here....gotta get up before the " rug rat " does!!!

[Guest guest]

Cassie,

The reason we went with a port for Ashton, was she was still able to

play competitive soccer. It is all under the skin. She has had it for just

shy of two years now. She was a terrible stick. They had to Fed Ex more

needles in to do her IVIG. The nurse went through six or seven and couldn't get

her. She was so thin at this time. She also would panic, and her veins would

constrict. She was against the port at first, but after a few months, she was

for it. It has been a blessing. She no longer panics. We use numbing cream

on the site prior to the infusion. She is still thin, but much healthier. She

has gained some weight, and is getting taller. People are amazed at the

change IVIG has made in her.

I am sure you will make the right decision for your child. No decision is

easy when it comes to your child.

L

Mom to Ashton 12 CVID, Asthma, Dyslexia & Marina 9 Asthma

[Guest guest]

Regimen Name:

Implantable ports

Used For:

Infusion of medications, parenteral nutrition solutions, blood products and other fluids

Overview:

Implantable ports are a unique type of vascular access device that permit the infusion of medications, parenteral nutrition solutions, blood products and other fluids; they are also useful for blood sampling. Unlike other vascular access devices, when not in use, implantable ports require almost no care or maintenance. (click the picture to enlarge)

An implantable port is a thin, soft plastic tube that is put into a vein and has an opening (port) just under the skin. The port is a hollow housing of either stainless steel, titanium, or plastic that contains a compressed latex septum over a portal chamber connected via a small tube to a silicone or polyurethane catheter that is inserted into a vein.

The port is placed subcutaneously and accessed percutaneously using a special non-coring needle. The needle has an offset bevel, which prevents coring the septum and allows 1000-3600 punctures per port (depending on manufacturer and needle size).

There are five major types of ports: venous, arterial, peritoneal, intrapleural, and epidural.

Arterial ports are used to administer continuous or intermittent intra-arterial chemotherapy. A catheter is placed into an artery, and port is usually placed on the lower rib cage. The port is accessed and managed in the usual manner, except for the heparinisation procedure. The catheter used for this type of port has a small lumen and seems to form clots more easily than venous catheters; hence the need for increased frequency (i.e. weekly) or higher concentrations of heparin (100�1000 U/mL).

Peritoneal ports are used to administer intermittent intraperitoneal chemotherapy for ovarian or colon cancer. A catheter is placed in the peritoneal space, and the port is usually placed on the lower rib cage but can be in the lower abdominal area. Peritoneal catheters have a large lumen and multiple fluid outlet holes in the catheter to allow rapid infusion of fluids. The port is accessed and managed in the usual sterile manner (except 19-guage non-coring needles are used to facilitate large-volume infusions). The portal is flushed after use with sterile saline; heparinisation is usually not required.

Epidural ports are used to administer intrathecal or epidural medications, including chemotherapy and analgesics. A catheter is placed into the intrathecal or epidural space and tunnelled through a long subcutaneous passage from the spinal area to the side of the abdomen, where the port is placed on the lower rib cage or the abdominal area. The portal is designed with a 60-�m screen filter to remove particulate matter. The port is accessed using a special 24-guage non-coring needle, always with meticulous sterile technique, including sterile gloves, preparation drape, and procedure tray. These types of ports should never be flushed with heparin. Preservative-free chemotherapy or morphine is instilled or infused into the port. After usage, 1�2mL of sterile, preservative-free saline may be used to flush the line. The catheter has a small lumen (0.5-mm inner diameter), which is suitable for this type of drug delivery.

Intrapleural ports are used to drain pleural effusions periodically in patients who are unresponsive to sclerosing. It is accessed with a non-coring needle. The patient's position needs to be changed frequently during the "tap." The port is flushed with 3mL of saline after usage.

[Guest guest]

I've shared our story before, but thought I'd share it again. Conner had

terrible vein access. He had tried SCIG and hated it due to site reactions, so

our immunologist finally suggested the port. It wasn't perfect, his surgeon

didn't stitch it in place very well and it moved a lot, but over time enough

scar tissue formed around it to hold it in place. I've never known anyone else

who had this problem. Conner has had a port and central line (broviac) over the

years, he never had a line infection. I've known a lot of kids who have had

ports and I know a couple who have had infections and had to have their ports

removed, but most seem to do very well. Conner still had his port (and central

line) during his transplant where his entire immune system was wiped out with

chemo and he still didn't have any issues. He had his port for about 7 years

when we finally had it removed after his transplant. Thankfully he no longer

needs infusions.

(NEMO carrier)

Mom to Hayden (16-unknown PID)

Evan (16-unknown PID)

Conner (16-NEMO; bone marrow transplant 8/17/07)

Kelsey (14-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids