Ports

[Guest guest]

Hi there,

had a port for his IVIG and he LOVED having it!! He was an almost

impossible stick and with the port he was almost garuanteed success each time.

The issue of infection is not one to take lightly, HOWEVER, it is a closed

access device. In other words, it is not the same as a broviac or hickman (2 of

my kids have had both ports and broviacs). It is ONLY accessed when they are

in the clinic and very rarely do you use it at home. If you do need to do IV

antibiotics at home (we did) you will need to learn how to care for it

appropriately. My son is an onocolgy patient. We have MANY friends who have

had

their ports for 5 or more years with no infections or problems. We did run into

a

snag with our port. Note: DO NOT let the kids climb trees with them! LOL

When (in our house, it's not " if " it's " when " they will fall) they fall out of

the tree it WILL break. We had to have it removed in an emergency surgery, but

his immune numbers had increased to the point where they weren't going to do

IVIG anyways, so it worked out for us. LOL But I don't think that will be an

issue for your little one, at least not for a while. :-)

Take Care and God Bless,

Mommy to Annette 13 (CP, developmental delay, g-tube, Selective Antibody

Deficiency, asthma, HIV+, GER, IVIG x 4 years), 8 (recoved from T and

B-Cell dysfunction, brain tumor survivor, seizure disorder, severe hearing

impairment, now off of IVIG) and Trayvon 4 (complex congenital heart defects,

asplenia, severe GER, strokes x 2, malrotated intestine) All wonderful and sent

from

God.

www.caringbridge.com/ny/my2angels

[Guest guest]

In a message dated 8/3/2004 10:43:42 AM Eastern Daylight Time,

mgt66@... writes:

I know this has been discussed before, but when I went to search the

archives I couldn't find any posts. I'm wondering how many PID

children have ports. I would like to hear the good, the bad, and any

other info that anyone has on the use of ports in children with

immune deficiencys.

Kody's had his port for three years with not one infection or problem with

it. For us it's been a wonderful thing. Emotionally Kody can't handle more

than one poke, and for us the trauma of that is overwhelming so the port has

saved Kody so much anxiety and stress. I think that if your child gets pokes

easily then I'd stick with the regular IV methods, but if their veins are shot

and it is traumatic for the child every single time then a port is an option.

For us we considered the fact that he'll have to get IVIG the rest of his

life, as well as IV antibiotics, and we felt that if we continued with

traditional IV's with all the stress etc involved with getting anywhere from 7

to 10

pokes per access then Kody would become terrified of the hospital, doctors,

nurses etc. Since that is a huge part of his life, and will always be, it was

best emotionally for Kody to have the port. If you ask him, he will tell you

that he loves his port. He remembers the many many pokes it used to take.

Even now he'll freak out if he has to have a blood draw that isn't through the

port (happens occasionally). There is certainly a higher risk of infection

with ports, and I know that some kids don't do well with them, but I have heard

of many that have had great success with them. I think it's a personal thing

that you have to really weigh all of the pro's and con's to. We discussed it

at length with our ped, who agreed that psychologically Kody needed the port

and we agreed to be aware always of the signs of infection etc and that at

the first sign of infection we'd have it taken out. So far it's been great, we

do have it tested about once a year to make sure it's working properly, and

we have cultures taken from it a few times a year (especially if Kody is ill

and the cause can't be pinpointed) from the port to look for infection.

Diane, Mom to Takoda, AKA Kody, Di Syndrome, Hypogammaglobulinemia,

Seizure Disorder, Asthma, GERD, bowel dysfunction, learning disabled, CAPD,

generalized anxiety disorder, and all around really great kid! Also Mom to

Arika

age 16, Kaila age 13 (asthma), and Sami age 10 (dyslexic). Please visit my

website at _www.geocities.com/schmidtzoo/SNAK_

(http://www.geocities.com/schmidtzoo/SNAK)

[Guest guest]

My dd has a port. She got it in just before her 3rd birthday. She was a

tough stick at the infusion clinic. We probably didn't have her hydrated

enough, but it was always traumatic. They encouraged us to get a port. So

we did.

Pros: rarely do we need a second stick! Yeah.

Cons: it is a site of infection and must be accessed by someone who knows

what they are doing.

It didn't stick out as much as they told us it would. All in all, for us,

given the age of the child and her fear factor, the port has been a

blessing. But, I'm looking forward to SubQ! I don't think that we'd okay a

second port since SubQ is now a viable option.

Pam

wife to (17 years)

mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 3

Ports

I know this has been discussed before, but when I went to search the

archives I couldn't find any posts. I'm wondering how many PID

children have ports. I would like to hear the good, the bad, and any

other info that anyone has on the use of ports in children with

immune deficiencys.~

[Guest guest]

Pam,

Did they ever tell you how often it would need to be replaced?

Ports

I know this has been discussed before, but when I went to search the

archives I couldn't find any posts. I'm wondering how many PID

children have ports. I would like to hear the good, the bad, and any

other info that anyone has on the use of ports in children with

immune deficiencys.~

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:

/messages

[Guest guest]

In a message dated 8/4/2004 12:37:39 PM Eastern Daylight Time,

pmork@... writes:

They told us to expect two years at a minimum, unless it becomes infected.

However, the day before we got her port put in, we were in the infusion

center and the boy there had had his port for 8 years! They were going to

replace it because he had outgrown the line. I am praying diligently that

we can use the port for two more years. Rebekah was be almost 7 at that

point and I'd probably push for SubQ.

Kody's had his for 4 years, and I've been told they can last 7-10 years! We

get it checked every so often for line length, especially since there is a

big difference in size between a 4 year old and an 8 year old! But at last

check they said that there was plenty of line there and not to worry. I'd like

to

hold on to the port until Kody's 12 or 13 then go to subQ.

Diane, Mom to Takoda, AKA Kody, Di Syndrome, Hypogammaglobulinemia,

Seizure Disorder, Asthma, GERD, bowel dysfunction, learning disabled, CAPD,

generalized anxiety disorder, and all around really great kid! Also Mom to

Arika

age 16, Kaila age 13 (asthma), and Sami age 10 (dyslexic). Please visit my

website at _www.geocities.com/schmidtzoo/SNAK_

(http://www.geocities.com/schmidtzoo/SNAK)

[Guest guest]

Hi there,

Both Annette and have had ports as well as external central lines.

had a port for 13 months while he recieved his IVIG. It was a God

Send. He was such a hard stick even just for blood that they wouldn't even

consider starting the IVIG until the port was already in place. We never had

an

infection. would still have his port if he wasn't feeling so darn

well. Let me explain. Prior to IVIG he had very, very little energy. After a

year of infusions, he was sooooo much better and was outside ALL THE TIME!

Well, one day he ventured out and tried to climb a tree (not a highly

coordinated child to begin with) and fell, well actually, just " dropped " one of

his

feet down by accident. Liken it to when you miss the bottom step on the

stairs, it really jars your body. Well, the side he " stepped " down on was the

same

side as the port. After several attempts at using it one day in the clinic,

it was determined that something was wrong with it. Off to interventional

radiology where it was very clear that he had " broke " it. Actually he had

pulled the tubing right out of the " hub " where the needle goes. So he doesn't

have it anymore, we decided to trial him off of the IVIG and he has been

doing very well on just prophylactic abx since.

Nettie had a port for far more reasons. She recieved IVIG, multiple abx,

and anti-fungal meds as well as daily blood draws and TPN. So she was accessed

virtually ALL the time. As a result she did have several infections BUT she

was also severely immunocompromised at the time and was actually in hospice

at the time. In the 6 months before she " lost " her port due to a systemic

infection, she actually started doing remarkably well and other than the

infection that caused us to have to remove the Port, she didn't have any other

issues with it. She is now getting to the point where she needs one again, as

they are sticking her 3 - 5 times each round of IVIG. She is not emotionally

ready for the Port, but we've been trying to drop it into conversation every

now and then so she slowly begins to accept that this is the way we may have

to go.

I would not hesitate to recommend a port to anyone that has a true reason to

get one. If it is for the convience of not having to have one stick a

month, then a port is not for you. However, if you need to have multiple blood

draws, IVs for other reasons, IV abx, monthly IVIG or even if you just have no

real access left for the monthly infusions and it has become so traumatic to

get the line placed, then a port IS for you.

Hope that helps.

Take Care and God Bless,

Annette

(14.5 yr) Selective Antibody Deficiency, IGG 2 & 4 deficiency, HIV+, CP,

Developmental Delays, G-tube, IVIG x 5 years (total of 10 years - but we

trialed

off for several), Currently mad at mom because I won't let her dye her hair

neon orange.

(almost 9yo) Previously B & T cell deficiencies, poor antibody

response, brain tumor survivor, severe hearing loss, epilepsy, IVIG x 1 year,

now

off and on every other day Zithromax abx prophylaxis. Huge fan of WWE and

sweets!

Trayvon (almost 6) Ivemark Syndrome - asplenia, severe congential heart

defects (open heart surgery x 3), malrotated intestines, microcephalic - Could

find fault in God himself if given a few moments alone with him! LOL

Marriela (2 yo), Micro-preemie (26 weeks 1lb 12oz), severe chronic lung

disease, failure to thrive, mild CP, developmental delays, severe food

allergies

(???) currently on a gluten/wheat free, dairy free, soy free diet. Yummy,

yummy. She may be small but she lets you know what she wants!

_www.caringbridge.com/ny/my2angels_

(http://www.caringbridge.com/ny/my2angels)

[Guest guest]

They told us to expect two years at a minimum, unless it becomes infected.

However, the day before we got her port put in, we were in the infusion

center and the boy there had had his port for 8 years! They were going to

replace it because he had outgrown the line. I am praying diligently that

we can use the port for two more years. Rebekah was be almost 7 at that

point and I'd probably push for SubQ.

Pam

RE: Ports

Pam,

Did they ever tell you how often it would need to be replaced?

[Guest guest]

Thanks! That was so much more encouraging that the messages we got about

ports! I was thinking that we are already on borrowed time. Rebekah got her

port just about 2 years ago.

Pam

Kody's had his for 4 years, and I've been told they can last 7-10 years!

[Guest guest]

Ashton received her port in June. She is much happier. They couldn't find her

veins very well. She doesn't even notice it now. It is all under the skin, so

she can continue to play competitive soccer. She loves it.

L.

[Guest guest]

In a message dated 8/24/2004 9:47:51 AM Eastern Standard Time,

writes:

was wondering what if any information was given to the School

Nurse/PE Teacher for safety and care of the port, and what she should

do if he takes a hit or fall to the place where the port is implanted.

Also, our son used to have a G-button and reacted terribly to the

device. The surgeon said many times he had never seen anything like

it. He would form large amounts of granulation tissue around the

device DAILY and we were instructed to use silver nitrate sticks on

it, and sometimes he had surgery to remove the overgrowth around the

G-button. This was before we knew he had a immune deficiency and I am

worried he will do the same with the implanted port. Has anyone out

there had similar experience and if so, what did you do?

Thanks for your help,

Patty

Hi Patty,

Nettie has had both. She still has the G-tube and we use the silver nitrate

sticks at least once a week because she is a granuloma queen. There is a

PID that specifically results in excess granulation tissue, though the name has

eluded me at this time. I wonder if there is is any connection? Anyways,

Nettie has had both devices and she never had a reaction problem with the

port. In addition, my son had a port and he reacts to EVERYTHING. One

he

has a PID (or at least did, we haven't tested him recently, but he's doing

just fine on his every other day antibiotic therapy) and he's a red head. He

is highly allergic to medical grade tape and all kinds of topical things, but

he never had a problem with his port.

As for the school, I would just make sure that the school nurse knows the

location of the port. I would make a copy of the card that the surgeon will

give you that has all of the information on it regarding the manufacturer, the

type of device, and all emergency contact numbers relative to the device

itself. I instructed our nurse to use this if she ever had to call 911, she

could just hand them the card and show them the location so that they could

access the device in the ER. I would NOT recommend any climbing activities

(ie,

trees, etc). The playground equipment should be just fine at school. There

should be no problem with limited or no-contact sports, at least that is what

our surgeon told us. did Jui-Jitsu (marital arts) with his port and

never had a problem. It was the tree climbing that did it in. He fell a bit

and stretched that side of his body just right that it pulled the catheter

right out of the hub of the port. The catheter then migrated down into his

heart and had to have surgery to remove it the next morning after an overnight

stay in the hospital. But overall, it was wonderful having the port and I

wouldn't have changed a thing for .

Nettie also did well with the port. She did get infections in the port, but

she was very, very compromised at the time. She is almost ready for another

one, because iv sticks are very difficult. I do NOT anticipate any issues

now.

Hope that helps!

Annette

(14.5 yr) Selective Antibody Deficiency, IGG 2 & 4 deficiency, HIV+, CP,

Developmental Delays, G-tube, IVIG x 5 years (total of 10 years - but we

trialed

off for several), Currently mad at mom because I won't let her dye her hair

neon orange.

(almost 9yo) Previously B & T cell deficiencies, poor antibody

response, brain tumor survivor, severe hearing loss, epilepsy, IVIG x 1 year,

now

off and on every other day Zithromax abx prophylaxis. Huge fan of WWE and

sweets!

Trayvon (almost 6) Ivemark Syndrome - asplenia, severe congential heart

defects (open heart surgery x 3), malrotated intestines, microcephalic - Could

find fault in God himself if given a few moments alone with him! LOL

Marriela (2 yo), Micro-preemie (26 weeks 1lb 12oz), severe chronic lung

disease, failure to thrive, mild CP, developmental delays, severe food

allergies

(???) currently on a gluten/wheat free, dairy free, soy free diet. Yummy,

yummy. She may be small but she lets you know what she wants!

_www.caringbridge.com/ny/my2angels_

(http://www.caringbridge.com/ny/my2angels)

[Guest guest]

Thanks to everyone for sharing their experieces to my portacath questions.

It has really helped my husband and me feel better about this, and it helps

to hear your experieces.

Thanks to everyone,

Patty

[Guest guest]

In a message dated 1/13/2005 1:03:02 P.M. Eastern Standard Time,

mom2lilnick@... writes:

Now Nick is allergic to latex, when he was little (6 to 10 months) he was on

TPN and had a central line. He reacted to the latex in this. Do ports have

latex in them? What are the chances of infection? They are under the skin,

aren't they? So the only access to infection is when they are being

accessed, right? Do they have to be flushed? or will they not clot? How

long will

one last? Is this even a reasonable request since it will only be accessed

once every 4 weeks?

My son has had a port since January of 2001. Kody is also latex allergic.

His port is made of titanium. Our surgeon specifically chose a port that was

latex free for Kody. Kody's has never had an infection in it. We use it for

IVIG every 3 weeks and also for IV antibiotics as needed. It is completely

under

the skin, so no risk of infection except while accessed. I have always

insisted on the most stringent sterile procedures when accessing and

de-accessing.

Kody is allergic to tegaderm too so we cover it with a couple gauze pads and

paper tape them on while accessed. If he has to have it on for a longer

period of time than just for IVIG then we use a bandage called OpSite. It's

more

breathable than tegaderm but still sterile and the adhesive is different so

he doesn't react as much to it. Yes they have to be flushed once a month if

not in use. We've never had to do that since the IVIG falls at the 3 week mark.

I've heard that some kids have them up to 10 years or so!! My pediatrician

and I had to weigh the risks vs. quality of life. For us, Kody's emotional

well being was very very important and since he already has an anxiety disorder

the whole trauma of getting poked over and over again was just too much for

him. Plus, he was at the point where after 8 pokes each time the vein would

blow so it really was time to give his veins a rest. Would I do it over again?

YES. It has taken the trauma out of poke days, with Emla on it doesn't even

hurt at all to be accessed. And recently he had to have blood drawn at U of

M, we went to the lab so they didn't use his port they took it out of his arms

instead. We found out that he really needs the port yet. It took 2 people to

get the blood out of his arms and 6 pokes. The nurse commented on the

condition of his veins stating that she can see why he has a port. She said

that

next time to make sure to have the doctor order the labs to be drawn on a floor

vs the lab that way they'll use his port. For some reason, the second you

take the rubber band thing off his arm he'll stop bleeding and the vein will

blow. She said there is no way you could run an IV in his arm successfully. The

point is, I guess, that I wish we'd gotten a port earlier. Maybe then Kody's

veins would heal better and he wouldn't need to have one for as long. As for

your doctor, I guess I'd list the reasons why you feel it is important to

have one, maybe even video tape one of the accessing so that he can see how

traumatic it is for your child. I'd make it clear you understand the risks,

show him how much you have researched it etc. Some kids do better with them

than

others do, Kody's a lucky one so far. For us it was worth it.

Diane, Mom to Kody, age 8.5, Di syndrome, CVID, learning disabled,

asthma, general anxiety disorder, sensory integration disorder, animal lover

and

protector, Yughio expert and chef extraordinaire. Also Mom to Arika, age

17, senioritis. Kaila, age 13, allergies/asthma, queen of worry warts and

perfectionists. Sami, age 10, allergies/asthma, dyslexic, official family cheer

team captain. Wife to , a loving wonderful dad and hyperactive workaholic.

Check out our website at: www.geocities.com/schmidtzoo/SNAK

[Guest guest]

In a message dated 1/13/2005 1:03:02 P.M. Eastern Standard Time,

mom2lilnick@... writes:

Now Nick is allergic to latex, when he was little (6 to 10 months) he was on

TPN and had a central line. He reacted to the latex in this. Do ports have

latex in them? What are the chances of infection? They are under the skin,

aren't they? So the only access to infection is when they are being

accessed, right? Do they have to be flushed? or will they not clot? How

long will

one last? Is this even a reasonable request since it will only be accessed

once every 4 weeks?

My son has had a port since January of 2001. Kody is also latex allergic.

His port is made of titanium. Our surgeon specifically chose a port that was

latex free for Kody. Kody's has never had an infection in it. We use it for

IVIG every 3 weeks and also for IV antibiotics as needed. It is completely

under

the skin, so no risk of infection except while accessed. I have always

insisted on the most stringent sterile procedures when accessing and

de-accessing.

Kody is allergic to tegaderm too so we cover it with a couple gauze pads and

paper tape them on while accessed. If he has to have it on for a longer

period of time than just for IVIG then we use a bandage called OpSite. It's

more

breathable than tegaderm but still sterile and the adhesive is different so

he doesn't react as much to it. Yes they have to be flushed once a month if

not in use. We've never had to do that since the IVIG falls at the 3 week mark.

I've heard that some kids have them up to 10 years or so!! My pediatrician

and I had to weigh the risks vs. quality of life. For us, Kody's emotional

well being was very very important and since he already has an anxiety disorder

the whole trauma of getting poked over and over again was just too much for

him. Plus, he was at the point where after 8 pokes each time the vein would

blow so it really was time to give his veins a rest. Would I do it over again?

YES. It has taken the trauma out of poke days, with Emla on it doesn't even

hurt at all to be accessed. And recently he had to have blood drawn at U of

M, we went to the lab so they didn't use his port they took it out of his arms

instead. We found out that he really needs the port yet. It took 2 people to

get the blood out of his arms and 6 pokes. The nurse commented on the

condition of his veins stating that she can see why he has a port. She said

that

next time to make sure to have the doctor order the labs to be drawn on a floor

vs the lab that way they'll use his port. For some reason, the second you

take the rubber band thing off his arm he'll stop bleeding and the vein will

blow. She said there is no way you could run an IV in his arm successfully. The

point is, I guess, that I wish we'd gotten a port earlier. Maybe then Kody's

veins would heal better and he wouldn't need to have one for as long. As for

your doctor, I guess I'd list the reasons why you feel it is important to

have one, maybe even video tape one of the accessing so that he can see how

traumatic it is for your child. I'd make it clear you understand the risks,

show him how much you have researched it etc. Some kids do better with them

than

others do, Kody's a lucky one so far. For us it was worth it.

Diane, Mom to Kody, age 8.5, Di syndrome, CVID, learning disabled,

asthma, general anxiety disorder, sensory integration disorder, animal lover

and

protector, Yughio expert and chef extraordinaire. Also Mom to Arika, age

17, senioritis. Kaila, age 13, allergies/asthma, queen of worry warts and

perfectionists. Sami, age 10, allergies/asthma, dyslexic, official family cheer

team captain. Wife to , a loving wonderful dad and hyperactive workaholic.

Check out our website at: www.geocities.com/schmidtzoo/SNAK

[Guest guest]

In a message dated 1/13/2005 2:43:42 P.M. Eastern Standard Time,

mom2lilnick@... writes:

Does this work the same way that it does with the cental lines. A culture

from the port and one from a vein? I hated that because Nick randomly runs

fevers for no reason, so he was always having blood cultures drawn as a baby

because he had the line. Two actually did end up being line infections.

Amy

When they have cultured Kody's port it has always only been from the port

and not additional blood taken from the arm.

Diane, Mom to Kody, age 8.5, Di syndrome, CVID, learning disabled,

asthma, general anxiety disorder, sensory integration disorder, animal lover

and

protector, Yughio expert and chef extraordinaire. Also Mom to Arika, age 17,

senioritis. Kaila, age 13, allergies/asthma, queen of worry warts and

perfectionists. Sami, age 10, allergies/asthma, dyslexic, official family cheer

team captain. Wife to , a loving wonderful dad and hyperactive workaholic.

Check out our website at: www.geocities.com/schmidtzoo/SNAK

[Guest guest]

In a message dated 1/13/2005 2:43:42 P.M. Eastern Standard Time,

mom2lilnick@... writes:

Does this work the same way that it does with the cental lines. A culture

from the port and one from a vein? I hated that because Nick randomly runs

fevers for no reason, so he was always having blood cultures drawn as a baby

because he had the line. Two actually did end up being line infections.

Amy

When they have cultured Kody's port it has always only been from the port

and not additional blood taken from the arm.

Diane, Mom to Kody, age 8.5, Di syndrome, CVID, learning disabled,

asthma, general anxiety disorder, sensory integration disorder, animal lover

and

protector, Yughio expert and chef extraordinaire. Also Mom to Arika, age 17,

senioritis. Kaila, age 13, allergies/asthma, queen of worry warts and

perfectionists. Sami, age 10, allergies/asthma, dyslexic, official family cheer

team captain. Wife to , a loving wonderful dad and hyperactive workaholic.

Check out our website at: www.geocities.com/schmidtzoo/SNAK

[Guest guest]

Amy,

My Rebekah has had a port for more than 2 years. She was just shy of her

3rd bday when she got it. We got it because of access problems. It is

under the skin and barely shows at all. We access it once every 3 weeks.

The site is numbed with Emla, but it can still be painful. However, they

usually don't have to dig around in the port, so the poke is short and

sweet. Whether it really hurts or whether she is just fearful....who know!

At the end of the infusion, we flush the port with saline and then heparin.

They can clot off, but it hasn't happened to us yet. Also, we haven't had

the line infected yet, but each time she has a major fever-of-unknown-origin

episode (and she only has there kinds of episodes, it seems) they need to

culture the port.

Hope this helps.

Pam

Ports

Hi,

How many of our kiddos have ports? Do you like them?

[Guest guest]

but each time she has a major fever-of-unknown-origin

> episode (and she only has there kinds of episodes, it seems) they need to

> culture the port.

Does this work the same way that it does with the cental lines. A culture

from the port and one from a vein? I hated that because Nick randomly runs

fevers for no reason, so he was always having blood cultures drawn as a baby

because he had the line. Two actually did end up being line infections.

Amy

Ports

>

>

>

> Hi,

>

> How many of our kiddos have ports? Do you like them?

>

>

>

>

> 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:

> /messages

>

[Guest guest]

Honestly, I don't know what they " should be " doing. They've never done the

port culture. They've always done the arm and found nothing. The last time

they wanted to do the port and use the same kind of needle that they use for

poking the arm. I wouldn't let them. I didn't think it was the right kind

of needle. The phlebotomist was going to do the stick but she'd never done

a port before, so the ped was going to do it. I declined! Yikes! I could

have had our home health nurse come out the next morning and do the stick.

Pam

wife to (18 years)

mother to , 11, Hannah, 8, Rebekah, 5, and Leah, 3

Re: Ports

but each time she has a major fever-of-unknown-origin

> episode (and she only has there kinds of episodes, it seems) they need to

> culture the port.

Does this work the same way that it does with the cental lines. A culture

from the port and one from a vein?

[Guest guest]

Honestly, I don't know what they " should be " doing. They've never done the

port culture. They've always done the arm and found nothing. The last time

they wanted to do the port and use the same kind of needle that they use for

poking the arm. I wouldn't let them. I didn't think it was the right kind

of needle. The phlebotomist was going to do the stick but she'd never done

a port before, so the ped was going to do it. I declined! Yikes! I could

have had our home health nurse come out the next morning and do the stick.

Pam

wife to (18 years)

mother to , 11, Hannah, 8, Rebekah, 5, and Leah, 3

Re: Ports

but each time she has a major fever-of-unknown-origin

> episode (and she only has there kinds of episodes, it seems) they need to

> culture the port.

Does this work the same way that it does with the cental lines. A culture

from the port and one from a vein?

[Guest guest]

" The last few infusions have been horrible... "

Hi, Amy. My daughter's first IVIG was traumatic. It took about 5-8 blown veins

before they got access and then she developed aseptic meningitis. We ended up

having to switch to another immunologist(even though he was brilliant) just so

that we could go to the neighboring hospital and try more humane nurses. The

nurses at the old place demanded that we get a port and blamed my daughter for

being a difficult stick.

At the new hospital...

We found two nurses that can usually get access within 2 sticks. We use a few

tricks (push pedialyte in advance, warm packs, moving around before being stuck,

arm lower than body, emla for 1/2 the amount that is directed as it causes my

daughter's veins to act weird, give her sweet juice right befor she lays down on

the bed to distract her senses, the nurse has sometimes put the needle in slow

and pulled it slow catching the flow in one direction or the other...no other

nurses do this, take lots of time with our daughter, etc.).

We were doing well for some time (1-3 sticks per infusion). Then, many months

later, we went to Duke to see Dr. Buckley. Would you believe we had the same

problem again!!!! None of the nurses could get access. We flew across the

country to have them run obscure T-cell tests and no one could get access! I

requested that the IV nurses draw her blood and each nurse assured me that they

have done " difficult " children a bizillion times. Yet, we were their first

difficult child (ya right!) and after 4-6 blown veins we were sent back to our

hotel. We came back the next day and the IV team was called in. They blew 2

veins but eventually got access. I asked Dr. Buckley her feelings about a port

(becaue our daughter was traumatized, again!) and she advised us against it.

Our daughter's T-cell function is too tenuous right now and she would probably

get an infection. It sooo depends on the child.

Anyway, when we got back home and la was back with the same nurse it was

1-2 sticks. No problem. = ) Whhhhew. If it were not for the nurses at our

hospital, our daughter would have a port. Even our GI doc pressured us to get

one...but they don't really see a whole picture.

Obviously, your situation is much different from ours. Our daughter only needs

to be stuck for blood draws/IVIG. No TPN or anything else. But, I thought you

might be interested in our story.

My heart goes out to you.

(mom to la, low everything, gut still train wreck even after

starting Miralax...ugh....perhaps a few more days will turn her around...)

Amy Bolich <mom2lilnick@...> wrote:

Hi,

How many of our kiddos have ports? Do you like them? We are going to be asking

again for to get one, but I am sure his immuno will say no because of

the risk of infection, but I wanted to arm myself with a little bit of info this

time. The last few infusions have been horrible, well that isn't true, the time

before last they got the IV going the first time. But this last one was so bad.

I was in tears and at one point I asked if we could just quit and not do it.

Now Nick is allergic to latex, when he was little (6 to 10 months) he was on TPN

and had a central line. He reacted to the latex in this. Do ports have latex

in them? What are the chances of infection? They are under the skin, aren't

they? So the only access to infection is when they are being accessed, right?

Do they have to be flushed? or will they not clot? How long will one last? Is

this even a reasonable request since it will only be accessed once every 4

weeks?

I am sure this is all for nothing since he will say no. oh, I guess the most

important thing. Does it still hurt to access it?

Amy,

mom to , 2 years old, CVID, asthma, GERD, on prophalatic abx (rotating

Septra and Amoxicillin) and IVIG (Carimune NF) every 4 weeks, flovent, xopenex,

albuterol and claritin. Allergic to milk, soy and latex.. among other things.

Visit Nick's Caringbridge site at http://www3.caringbridge.org/ne/nicholasb/

[Guest guest]

" The last few infusions have been horrible... "

Hi, Amy. My daughter's first IVIG was traumatic. It took about 5-8 blown veins

before they got access and then she developed aseptic meningitis. We ended up

having to switch to another immunologist(even though he was brilliant) just so

that we could go to the neighboring hospital and try more humane nurses. The

nurses at the old place demanded that we get a port and blamed my daughter for

being a difficult stick.

At the new hospital...

We found two nurses that can usually get access within 2 sticks. We use a few

tricks (push pedialyte in advance, warm packs, moving around before being stuck,

arm lower than body, emla for 1/2 the amount that is directed as it causes my

daughter's veins to act weird, give her sweet juice right befor she lays down on

the bed to distract her senses, the nurse has sometimes put the needle in slow

and pulled it slow catching the flow in one direction or the other...no other

nurses do this, take lots of time with our daughter, etc.).

We were doing well for some time (1-3 sticks per infusion). Then, many months

later, we went to Duke to see Dr. Buckley. Would you believe we had the same

problem again!!!! None of the nurses could get access. We flew across the

country to have them run obscure T-cell tests and no one could get access! I

requested that the IV nurses draw her blood and each nurse assured me that they

have done " difficult " children a bizillion times. Yet, we were their first

difficult child (ya right!) and after 4-6 blown veins we were sent back to our

hotel. We came back the next day and the IV team was called in. They blew 2

veins but eventually got access. I asked Dr. Buckley her feelings about a port

(becaue our daughter was traumatized, again!) and she advised us against it.

Our daughter's T-cell function is too tenuous right now and she would probably

get an infection. It sooo depends on the child.

Anyway, when we got back home and la was back with the same nurse it was

1-2 sticks. No problem. = ) Whhhhew. If it were not for the nurses at our

hospital, our daughter would have a port. Even our GI doc pressured us to get

one...but they don't really see a whole picture.

Obviously, your situation is much different from ours. Our daughter only needs

to be stuck for blood draws/IVIG. No TPN or anything else. But, I thought you

might be interested in our story.

My heart goes out to you.

(mom to la, low everything, gut still train wreck even after

starting Miralax...ugh....perhaps a few more days will turn her around...)

Amy Bolich <mom2lilnick@...> wrote:

Hi,

How many of our kiddos have ports? Do you like them? We are going to be asking

again for to get one, but I am sure his immuno will say no because of

the risk of infection, but I wanted to arm myself with a little bit of info this

time. The last few infusions have been horrible, well that isn't true, the time

before last they got the IV going the first time. But this last one was so bad.

I was in tears and at one point I asked if we could just quit and not do it.

Now Nick is allergic to latex, when he was little (6 to 10 months) he was on TPN

and had a central line. He reacted to the latex in this. Do ports have latex

in them? What are the chances of infection? They are under the skin, aren't

they? So the only access to infection is when they are being accessed, right?

Do they have to be flushed? or will they not clot? How long will one last? Is

this even a reasonable request since it will only be accessed once every 4

weeks?

I am sure this is all for nothing since he will say no. oh, I guess the most

important thing. Does it still hurt to access it?

Amy,

mom to , 2 years old, CVID, asthma, GERD, on prophalatic abx (rotating

Septra and Amoxicillin) and IVIG (Carimune NF) every 4 weeks, flovent, xopenex,

albuterol and claritin. Allergic to milk, soy and latex.. among other things.

Visit Nick's Caringbridge site at http://www3.caringbridge.org/ne/nicholasb/

[Guest guest]

In a message dated 1/14/2005 2:16:52 A.M. Eastern Standard Time,

writes:

Now Nick is allergic to latex, when he was little (6 to 10 months) he was on

TPN and had a central line. He reacted to the latex in this. Do ports have

latex in them? What are the chances of infection? They are under the

skin, aren't they? So the only access to infection is when they are being

accessed, right? Do they have to be flushed? or will they not clot? How long

will

one last? Is this even a reasonable request since it will only be accessed

once every 4 weeks?

When was receiving IVIG he had a port. It was the ONLY way we could

get a line in and stay in. I loved it. I do know that they are a potential

source of infection, but for our kids. . . everything is. He is not allergic

to Latex, but is severely allergic to medical grade adhesives (ie. tegaderm,

plastic tape, coverderm, etc.). But the port itself, we were informed, did

not contain ANY Latex (the tubing is silicone). You are correct in that they

are under the skin. In a young or thin child you can see it clearly under

the skin (which is actually helpful when accessing it because you can identify

the center very easily) but with a larger child or an older one - like

was - it is more blended with their body shape (or rolls LOL).

had

his accessed for IV antibiotics when he first got it and then it was only

accessed every 4 weeks. When not being used regularly (like when we were being

trialed off of the IVIG) he had to have it flushed every 2 - 3 months. He

finally " lost " his when he " fell " off of a tree branch and jarred that side of

his body really hard (like when you miss the last step coming down the

stairs) and pulled the catheter right out of the hub. But this is very rare to

happen and he was much larger and therefore doing more " age appropriate " things

for a kid his age. You should have no problem with your port and Nick's

activity level.

Hope that helps!

Mommy to

Annette

14yo - Selective Antibody Deficiency, IVIG dependent x 5 years, CP,

Developmental Delays, G-tube, HIV+. Hates Middle School and thinks she is going

to

grow up and live in a HOTEL in Las Vagas where there is a lot of " Bling Bling " .

Hmmm.

9yo - Past B and T cell dysfunction, IVIG x 12 months (now off over 2

years), brain tumor survivor, epilepsy, severe hearing impairment, ADD,

currently on every other day Zithromax as prophylaxis (and doing great with

it!)

In love with the WWE and likes to try out his " new " moves on. . . yep, ME!

Trayvon 6yo - Ivemark Syndrome, severe congential heart defects, asplenia,

severe GI issues (reflux, decreased gastric motility, previous malrotation of

the intestines), microcephalic, FTT. He could find fault with God himself if

left alone with him for 5 minutes!

Marriela 2yo - 26 wk preemie (1lb 12oz), severe chronic lung disease,

asthma, reflux, FTT, mild CP. She makes up in attitude what she lacks in size!!

_www.caringbridge.com/ny/my2angels_

(http://www.caringbridge.com/ny/my2angels)

[Guest guest]

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

There is a special “double cored, 90 degree angled needle for a port.

Furthermore, if they have never accessed IVAD(intravenous access device)

they should NOT be doing as such. The regular needle could damage the

port and cause significant problems…..You are so smart and lucky that

you used your gut and not their ignorance….See, the nurse in me always

has to come out. Sometimes I get so ashamed of the people in this

profession……

From: Pam Mork [mailto:pmork@...]

Sent: Thursday, January 13, 2005 5:17 PM

Subject: RE: Ports

Honestly, I don't know what they " should be " doing. They've never done

the

port culture. They've always done the arm and found nothing. The last

time

they wanted to do the port and use the same kind of needle that they use

for

poking the arm. I wouldn't let them. I didn't think it was the right

kind

of needle. The phlebotomist was going to do the stick but she'd never

done

a port before, so the ped was going to do it. I declined! Yikes! I

could

have had our home health nurse come out the next morning and do the

stick.

Pam

wife to (18 years)

mother to , 11, Hannah, 8, Rebekah, 5, and Leah, 3

Re: Ports

but each time she has a major fever-of-unknown-origin

> episode (and she only has there kinds of episodes, it seems) they need

to

> culture the port.

Does this work the same way that it does with the cental lines. A

culture

from the port and one from a vein?

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]

, 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]

Thanks for confirming that, ! It was rather hard to tell my regular

ped that I didn't trust him to access the port, though. LOL

Our home health nurses told us to carry the correct needle with us whenever

we go in. They'd write the orders to replace it.

I've been praying that you'd get a diagnosis soon! Rebekah and I are sick

with a terrible cough. It's not the flu or whooping cough, so we are just

trying to tough it out. Of course, the -22 degree air outside isn't making

it easier!

Pam

mom to 4

Rebekah, 5, has CVID

RE: Ports

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