RE: Hello, we are new to this group

[Guest guest]

Hello everyone!

My name is and my daughter is Ashlynn. She is 3 1/2 yrs old. She has

been diagnosed with GERD, Chronic Neutropenia, Primary Immune Deficiency (low

IgG), and they think she has Swachman-Diamond Syndrome (bone marrow failure

syndrome). She has been sick since birth with infection after infection. She

has had 4 sinus surgeries, 3 sets of tubes in her ears, her tonsils and adneoids

out, 3 bone marrow biopsies, several other tests and procedures as well.

We have been doing the monthly IVIG infusions for 6 months. They have helped

tremendously, but she was still getting sick in between infusions (not to where

she needed an antibiotic) which is a first in her whole life. She was getting

really bad headaches which the Hematologist said was asceptic menengitis

syndrome and she would also get really bad leg pains everytime. We were

pre-medicating her and also keeping her on Motrin nonstop for 3 days after the

infusion and it didn't seem to help. The last time she had her IVIG, they also

gave her IV Benadryl on top of the Motrin and it still didn't help her. We were

told by out SDS spec. out of Cincinnati Children's Hospital to start doing the

SCIG infusions to see if they would eliminated the horrible side effects. We

have done 6 weeks worth and are now having problems with it. The first 3 were

great! Then we did the next one and one of the sites leaked. We had no idea

what was going on. Not even the nurse helping us. We let it go, then the next

week, the same thing happened. She called her surpervisor and he said maybe

because we were only doing them in her belly there was too much fluid built up

and also suggested switching to a smaller tubing. We did her infusion on Sat

and did it with the smaller tubing and did them in her leg and it STILL LEAKED

like 3 min after starting it. Now we are boggled and can't figure it out. Now

the supervisor is telling us to try 3 sites next time! Has anyone ever come

across this problem before? She is 3 1/2 yrs old and only weighs 30 lbs. Do

you think it's because she doesn't have enough fat?

I'm really sorry to write such a long email, but my other support groups really

haven't had this kind of problem to be able to shed some light. I was hoping

someone here might have experienced this before. Any help would be greatly

appreciated.

Take care,

Mom to Ashlynn 3 1/2 yrs Chronic Neutropenia, GERD, SDS?, PID

Camryn 10 yrs. ADD and healthy

[Guest guest]

Hi sounds like you have had a long rough road. I have a 12 yo so with PID CVID.

He received Sub Q and has for 2 years but was on IV for7 years before we started

the Sub Q. I would first ask if the needle is long enough. We went up to a

longer needle and it stopped the leaking as well as you can go to 3 needles if

you need or even 4 to put a little less in each site. Also you might try her

back. Around her love handles where this is a little more fat pad. This is the

only site my son will not do. And we just use it over and over and have had no

problems. Hope this helps. There is also another family here with kids with SD.

Her name is Pattie and I am sure she will have lots of info for you.

BARBIE

________________________________

From: " Bfredrickson@... " <Bfredrickson@...>

Sent: Monday, December 1, 2008 1:15:37 PM

Subject: Re: Hello, we are new to this group

Hello everyone!

My name is and my daughter is Ashlynn. She is 3 1/2 yrs old. She has

been diagnosed with GERD, Chronic Neutropenia, Primary Immune Deficiency (low

IgG), and they think she has Swachman-Diamond Syndrome (bone marrow failure

syndrome). She has been sick since birth with infection after infection. She

has had 4 sinus surgeries, 3 sets of tubes in her ears, her tonsils and adneoids

out, 3 bone marrow biopsies, several other tests and procedures as well.

We have been doing the monthly IVIG infusions for 6 months. They have helped

tremendously, but she was still getting sick in between infusions (not to where

she needed an antibiotic) which is a first in her whole life. She was getting

really bad headaches which the Hematologist said was asceptic menengitis

syndrome and she would also get really bad leg pains everytime. We were

pre-medicating her and also keeping her on Motrin nonstop for 3 days after the

infusion and it didn't seem to help. The last time she had her IVIG, they also

gave her IV Benadryl on top of the Motrin and it still didn't help her. We were

told by out SDS spec. out of Cincinnati Children's Hospital to start doing the

SCIG infusions to see if they would eliminated the horrible side effects. We

have done 6 weeks worth and are now having problems with it. The first 3 were

great! Then we did the next one and one of the sites leaked. We had no idea

what was going on. Not even the

nurse helping us. We let it go, then the next week, the same thing happened.

She called her surpervisor and he said maybe because we were only doing them in

her belly there was too much fluid built up and also suggested switching to a

smaller tubing. We did her infusion on Sat and did it with the smaller tubing

and did them in her leg and it STILL LEAKED like 3 min after starting it. Now

we are boggled and can't figure it out. Now the supervisor is telling us to try

3 sites next time! Has anyone ever come across this problem before? She is 3

1/2 yrs old and only weighs 30 lbs. Do you think it's because she doesn't have

enough fat?

I'm really sorry to write such a long email, but my other support groups really

haven't had this kind of problem to be able to shed some light. I was hoping

someone here might have experienced this before. Any help would be greatly

appreciated.

Take care,

Mom to Ashlynn 3 1/2 yrs Chronic Neutropenia, GERD, SDS?, PID

Camryn 10 yrs. ADD and healthy

[Guest guest]

" ...sites

leaked. We had no idea what was going on. Not even the nurse helping

us. We let it go, then the next week, the same thing happened. She is 3 1/2 yrs

old and only weighs 30 lbs. Do you think it's because she doesn't have

enough fat? "

It sounds like an equipment or nursing failure. There are many lean kiddos

thand even infants that do SCIG but it is a little more challenging. Don't give

up! : )

I've been doing SCIG for years and, just last month, got a bad batch of needles

and lost a couple cc's. About 90% of the time, it goes smoothly. But we always

have to watch carefully.

Every child has a different method that works for them. Before I got the hang

of it (btw, the nurses were little help when we started years ago) we used 8 mm

needles. I found that I was not pushing them in deep enough -- so it was really

like using a 6 mm. (When we got comfortable, I changed back to the 6mm ones.

Also, the company has been producing sharper needles lately -- which really

helps.)

There are different products out there and I urge you to get samples and see

what works best for you. We use little discs. If you pull the sides back, and

make it look like a sting-ray, they go in really nicely. If you use them like a

thumb tack, they don't go in well and often leak. My contact person is Jordan

at Norfolk. He " gets it " and is always happy to send mom's a few samples. If

you call, ask for 8mm and 6mm Clearviews sent overnight. Also, the tubing that

goes with the needles is really fine and needs little priming (.4 to .5 cc).

You can get 3 or 4 legged sets and clamp whatever you are not using. It's nice

to have an extra leg so that, if there is a failure, it's not that stressful.

You can just plug the free leg in and keep going.

Again, there are lots of sets out there and you have to find what works for you.

If you keep getting failures, try something else. : )

http://www.norfolkmedical.com/clearview%20sets.html

Jordan: 847-674-7075

Let us know how it goes. There are a lot of moms here who can trouble shoot

with you.

mom to CVIDer, 7

[Guest guest]

Welcome !

My daughter, Tristen is also 3 ½ and weighs about the same as Ashlynn. We

do 13ml subq weekly. We do 4 sites, since we were told each site could only

hold so much gammaglobulin. We haven’t had any issues with leaking. We use

a 6mm needle. We also have another little trick….once we put the needles

in, I put a princess nexcare waterproof bandaid on each needle site and then

place 2 smaller tegaterm stripes over 2 sites. She likes having a royal

princess ball on her leg during her infusion. Lol! Here’s a pic of Tristen

with her royal ball.

Hope you get this figured out.

le

_____

From: [mailto: ] On Behalf Of

Bfredrickson@...

Sent: Monday, December 01, 2008 11:16 AM

Subject: Re: Hello, we are new to this group

Hello everyone!

My name is and my daughter is Ashlynn. She is 3 1/2 yrs old. She has

been diagnosed with GERD, Chronic Neutropenia, Primary Immune Deficiency

(low IgG), and they think she has Swachman-Diamond Syndrome (bone marrow

failure syndrome). She has been sick since birth with infection after

infection. She has had 4 sinus surgeries, 3 sets of tubes in her ears, her

tonsils and adneoids out, 3 bone marrow biopsies, several other tests and

procedures as well.

We have been doing the monthly IVIG infusions for 6 months. They have helped

tremendously, but she was still getting sick in between infusions (not to

where she needed an antibiotic) which is a first in her whole life. She was

getting really bad headaches which the Hematologist said was asceptic

menengitis syndrome and she would also get really bad leg pains everytime.

We were pre-medicating her and also keeping her on Motrin nonstop for 3 days

after the infusion and it didn't seem to help. The last time she had her

IVIG, they also gave her IV Benadryl on top of the Motrin and it still

didn't help her. We were told by out SDS spec. out of Cincinnati Children's

Hospital to start doing the SCIG infusions to see if they would eliminated

the horrible side effects. We have done 6 weeks worth and are now having

problems with it. The first 3 were great! Then we did the next one and one

of the sites leaked. We had no idea what was going on. Not even the nurse

helping us. We let it go, then the next week, the same thing happened. She

called her surpervisor and he said maybe because we were only doing them in

her belly there was too much fluid built up and also suggested switching to

a smaller tubing. We did her infusion on Sat and did it with the smaller

tubing and did them in her leg and it STILL LEAKED like 3 min after starting

it. Now we are boggled and can't figure it out. Now the supervisor is

telling us to try 3 sites next time! Has anyone ever come across this

problem before? She is 3 1/2 yrs old and only weighs 30 lbs. Do you think

it's because she doesn't have enough fat?

I'm really sorry to write such a long email, but my other support groups

really haven't had this kind of problem to be able to shed some light. I was

hoping someone here might have experienced this before. Any help would be

greatly appreciated.

Take care,

Mom to Ashlynn 3 1/2 yrs Chronic Neutropenia, GERD, SDS?, PID

Camryn 10 yrs. ADD and healthy

[Guest guest]

,

Thank you for the input. We are using the same ones you are talking about.

Her's is the 27 Gauge x 6mm needles and we switched the tubing to the 120ml/hr

tubing from the 180. We use the Freedom 60 Pump too. The nurse only inserted

the needles the first time for us to learn how to do it, from then on I or my

husband have done everything. She says that we are not doing anything wrong,

but she has never done the SCIG infusions before, she usually does IVIG. So,

she hasn't really experienced any of this. I have called the Pharmacist that we

get our supplies from to ask what else he might think could be causing the

leaking and all he did was say I can send you the tubing you requested to see if

it helps. We get our supplies from US Bioservices out of PA. I'm going to try

calling him again tomorrow and pick his brain.

Thanks so much,

---- Schulman <dietdoc@...> wrote:

> " ...sites

> leaked. We had no idea what was going on. Not even the nurse helping

> us. We let it go, then the next week, the same thing happened. She is 3 1/2

yrs

> old and only weighs 30 lbs. Do you think it's because she doesn't have

> enough fat? "

>

> It sounds like an equipment or nursing failure. There are many lean kiddos

thand even infants that do SCIG but it is a little more challenging. Don't give

up! : )

>

> I've been doing SCIG for years and, just last month, got a bad batch of

needles and lost a couple cc's. About 90% of the time, it goes smoothly. But

we always have to watch carefully.

>

> Every child has a different method that works for them. Before I got the hang

of it (btw, the nurses were little help when we started years ago) we used 8 mm

needles. I found that I was not pushing them in deep enough -- so it was really

like using a 6 mm. (When we got comfortable, I changed back to the 6mm ones.

Also, the company has been producing sharper needles lately -- which really

helps.)

>

> There are different products out there and I urge you to get samples and see

what works best for you. We use little discs. If you pull the sides back, and

make it look like a sting-ray, they go in really nicely. If you use them like a

thumb tack, they don't go in well and often leak. My contact person is Jordan

at Norfolk. He " gets it " and is always happy to send mom's a few samples. If

you call, ask for 8mm and 6mm Clearviews sent overnight. Also, the tubing that

goes with the needles is really fine and needs little priming (.4 to .5 cc).

You can get 3 or 4 legged sets and clamp whatever you are not using. It's nice

to have an extra leg so that, if there is a failure, it's not that stressful.

You can just plug the free leg in and keep going.

>

> Again, there are lots of sets out there and you have to find what works for

you. If you keep getting failures, try something else. : )

>

>

> http://www.norfolkmedical.com/clearview%20sets.html

> Jordan: 847-674-7075

> Let us know how it goes. There are a lot of moms here who can trouble shoot

with you.

>

>

> mom to CVIDer, 7

>

>

[Guest guest]

Hi, .

I'm just brainstorming here but here is what comes to mind... This is not

medical advice...just what I have experienced as mom who does SCIG...

1. We always make sure that we have **brand new needles**. I'd call Jordan and

get a brand new set (that has adhesive backs) overnighted to you. If they were

sent

to you from a pharmaceutical or home health company, there is no way to verify

that you have the latest version of the needles. (This happened to me when our

home health co. first sent us the sets.) SCIG is not that common so they often

pull stuff from stock. The older version was not as

sharp and caused us to leak on me most of the time. And there is always the

chance that the manufacturers machines need to be adjusted -- and, in that case,

Jordan needs to know STAT.

2. We make sure the sides of the disc back (sting ray). I know it feels really

weird, like it might fly out of your hands, but it helped us to keep most of the

needle available for insert.

3. We make sure that we pinch enough fat/tissue up away from the body for the

stick. We never insert the needle with the skin flat -- ever. The inch or so

that we pinch is tight enough so we easily get the needle through the skin

without the skin pushing back at us. If you hear a " popping " or " puncture

sound " it means that the needles are not sharp enough and I'd let Jordan know --

so they can adjust the machines.

4. I'd try using something 100% reliable to tape down the needles. (Many of

our kids don't do well with tagederm and the " generic ones " that come with the

sets are not sticky enough for our mobile kids). Don't let go of the needles

when you use the adhesive...just carefully place the adhesive/bandaid down

really well as you are holding down the disc. We use stretchy hypafix tape to

hold the discs down. We do an " X " formation (imagine the disc is in the middle

of the " X " so that the disc is pressed down super well and the " tail " doesn't

get messed with (see next).

5. We avoid putting dressing over that little " tail " (tiny metal thing that

sticks up just slightly and is connected to the tubing). The disc needs to be

flat against the skin. If the tail is not given room to move around, and you

push it to lay flat, it can cause the disc to move up just slightly. And with a

6 mm needle you have ZERO wiggle room.

6. We did much better with the 8mm -- until we got the hang of it. Do make

sure you are using the fattiest part of her body.

Also, I'd call Jordan Dalton and pick his brain too. : ) 847-674-7075

Last, if this doesn't work for you, try another needle set. I'm sure that moms

will chime in here.

Let us know how it goes.

________________________________

From: " Bfredrickson@... " <Bfredrickson@...>

Cc: Schulman <dietdoc@...>

Sent: Monday, December 1, 2008 3:30:49 PM

Subject: Re: Hello, we are new to this group

,

Thank you for the input. We are using the same ones you are talking about.

Her's is the 27 Gauge x 6mm needles and we switched the tubing to the 120ml/hr

tubing from the 180. We use the Freedom 60 Pump too. The nurse only inserted

the needles the first time for us to learn how to do it, from then on I or my

husband have done everything. She says that we are not doing anything wrong,

but she has never done the SCIG infusions before, she usually does IVIG. So,

she hasn't really experienced any of this. I have called the Pharmacist that we

get our supplies from to ask what else he might think could be causing the

leaking and all he did was say I can send you the tubing you requested to see if

it helps. We get our supplies from US Bioservices out of PA. I'm going to try

calling him again tomorrow and pick his brain.

Thanks so much,

---- Schulman <dietdocsbcglobal (DOT) net> wrote:

> " ...sites

> leaked. We had no idea what was going on. Not even the nurse helping

> us. We let it go, then the next week, the same thing happened. She is 3 1/2

yrs

> old and only weighs 30 lbs. Do you think it's because she doesn't have

> enough fat? "

>

> It sounds like an equipment or nursing failure. There are many lean kiddos

thand even infants that do SCIG but it is a little more challenging. Don't give

up! : )

>

> I've been doing SCIG for years and, just last month, got a bad batch of

needles and lost a couple cc's. About 90% of the time, it goes smoothly. But

we always have to watch carefully.

>

> Every child has a different method that works for them. Before I got the hang

of it (btw, the nurses were little help when we started years ago) we used 8 mm

needles. I found that I was not pushing them in deep enough -- so it was really

like using a 6 mm. (When we got comfortable, I changed back to the 6mm ones.

Also, the company has been producing sharper needles lately -- which really

helps.)

>

> There are different products out there and I urge you to get samples and see

what works best for you. We use little discs. If you pull the sides back, and

make it look like a sting-ray, they go in really nicely. If you use them like a

thumb tack, they don't go in well and often leak. My contact person is Jordan

at Norfolk. He " gets it " and is always happy to send mom's a few samples. If

you call, ask for 8mm and 6mm Clearviews sent overnight. Also, the tubing that

goes with the needles is really fine and needs little priming (.4 to .5 cc).

You can get 3 or 4 legged sets and clamp whatever you are not using. It's nice

to have an extra leg so that, if there is a failure, it's not that stressful.

You can just plug the free leg in and keep going.

>

> Again, there are lots of sets out there and you have to find what works for

you. If you keep getting failures, try something else. : )

>

>

> http://www.norfolkm edical.com/ clearview% 20sets.html

> Jordan: 847-674-7075

> Let us know how it goes. There are a lot of moms here who can trouble shoot

with you.

>

>

> mom to CVIDer, 7

>

>

[Guest guest]

le,

Thank you for the input! I would love to see a pic of Tristen. It didn't come

through on your email. I will try that with her infusion tomorrow and see what

happens. My daughter is getting 10 ml weekly. The pharmacist I talked to today

is going to call CSL Behering to see what they think is the problem. Here is a

pic of Ashlynn during her first infusion. I didn't realize you were supposed

to put them on the same side of the belly not on the opposite side. We learned.

LOL Where do you give her her infusions? Do you do different body parts every

time? I'm just getting a feel for this stuff. Any input would be great!

Take care,

---- le Mina <daniellemina@...> wrote:

> Welcome !

>

>

>

> My daughter, Tristen is also 3 ½ and weighs about the same as Ashlynn. We

> do 13ml subq weekly. We do 4 sites, since we were told each site could only

> hold so much gammaglobulin. We havenÂ’t had any issues with leaking. We use

> a 6mm needle. We also have another little trickÂ….once we put the needles

> in, I put a princess nexcare waterproof bandaid on each needle site and then

> place 2 smaller tegaterm stripes over 2 sites. She likes having a royal

> princess ball on her leg during her infusion. Lol! HereÂ’s a pic of Tristen

> with her royal ball.

>

>

>

> Hope you get this figured out.

>

>

>

> le

>

>

>

> _____

>

> From: [mailto: ] On Behalf Of

> Bfredrickson@...

> Sent: Monday, December 01, 2008 11:16 AM

>

> Subject: Re: Hello, we are new to this group

>

>

>

> Hello everyone!

>

> My name is and my daughter is Ashlynn. She is 3 1/2 yrs old. She has

> been diagnosed with GERD, Chronic Neutropenia, Primary Immune Deficiency

> (low IgG), and they think she has Swachman-Diamond Syndrome (bone marrow

> failure syndrome). She has been sick since birth with infection after

> infection. She has had 4 sinus surgeries, 3 sets of tubes in her ears, her

> tonsils and adneoids out, 3 bone marrow biopsies, several other tests and

> procedures as well.

>

> We have been doing the monthly IVIG infusions for 6 months. They have helped

> tremendously, but she was still getting sick in between infusions (not to

> where she needed an antibiotic) which is a first in her whole life. She was

> getting really bad headaches which the Hematologist said was asceptic

> menengitis syndrome and she would also get really bad leg pains everytime.

> We were pre-medicating her and also keeping her on Motrin nonstop for 3 days

> after the infusion and it didn't seem to help. The last time she had her

> IVIG, they also gave her IV Benadryl on top of the Motrin and it still

> didn't help her. We were told by out SDS spec. out of Cincinnati Children's

> Hospital to start doing the SCIG infusions to see if they would eliminated

> the horrible side effects. We have done 6 weeks worth and are now having

> problems with it. The first 3 were great! Then we did the next one and one

> of the sites leaked. We had no idea what was going on. Not even the nurse

> helping us. We let it go, then the next week, the same thing happened. She

> called her surpervisor and he said maybe because we were only doing them in

> her belly there was too much fluid built up and also suggested switching to

> a smaller tubing. We did her infusion on Sat and did it with the smaller

> tubing and did them in her leg and it STILL LEAKED like 3 min after starting

> it. Now we are boggled and can't figure it out. Now the supervisor is

> telling us to try 3 sites next time! Has anyone ever come across this

> problem before? She is 3 1/2 yrs old and only weighs 30 lbs. Do you think

> it's because she doesn't have enough fat?

>

> I'm really sorry to write such a long email, but my other support groups

> really haven't had this kind of problem to be able to shed some light. I was

> hoping someone here might have experienced this before. Any help would be

> greatly appreciated.

>

> Take care,

>

>

> Mom to Ashlynn 3 1/2 yrs Chronic Neutropenia, GERD, SDS?, PID

> Camryn 10 yrs. ADD and healthy

>

>

>

>

>

>

[Guest guest]

- welcome to the group. I wanted to remind everyone that attachments

don't come through to the group because of potential viruses also passing

through. But please feel free to upload to the group site.

We tend to rotate Macey's sites. She's done subq for just over 4 years now. We

have in the past put the needles in two completely different areas. She does 2

sites of 25 cc's each. She's just 100 lbs so her stomach can handle that volume

in each site. But I hope Bering can help you. If not someone at the IDF might

have some suggestions.

Ursula - mom to (16) and Macey (13,CVID)

http://www.caringbridge.org/visit/maceyholleman