Re: Molly's Nightmare....or mine?

[Guest guest]

Terri -- just a thought. Katy's first 3 IV's they pre-medicated with

Benadryl -- we saw terrible behavior. She hissed and growled at us,

hit, bit, and screamed. She was like a wild-cat. On the 3rd IV, her

doctor came in during the IV and took one look at her and told us that

Katy was having an adverse reactin to Benadryl and to NEVER use it

again. We never saw another " fit " . So, yes, talk to your ped -- but

the solution may be as simple as not premedicating!

Hope that helps,

dale (Mom to Katy, CVID, age 22 and grown)

[Guest guest]

THis was the first time we premedicated with Benadryl because we were

told it would possibly prevent a repeat of previous behavior. So,

unfortunately, in our case it is not the benadryl.

Although....Benadryl during IVIG denfinately makes the kids super

grumpy. It made me super grumpy. But we have not used it at all for

our SCIG.

Terri

>

> Terri -- just a thought. Katy's first 3 IV's they pre-medicated with

> Benadryl -- we saw terrible behavior. She hissed and growled at us,

> hit, bit, and screamed. She was like a wild-cat. On the 3rd IV, her

> doctor came in during the IV and took one look at her and told us

that

> Katy was having an adverse reactin to Benadryl and to NEVER use it

> again. We never saw another " fit " . So, yes, talk to your ped --

but

> the solution may be as simple as not premedicating!

>

> Hope that helps,

> dale (Mom to Katy, CVID, age 22 and grown)

>

[Guest guest]

Terri -

I am literally running out the door and will try to call you from the road

and/or write more this evening. Dale is right...benedryl can make monsters out

of an already strong willed kiddo. It happened to mine. Don't fret or even

think about a port just yet...let's get our heads together. , Dani's

mom

[Guest guest]

My son has a port-- it was actually so much better than getting stuck

multiple times due to blown or infiltrated veins. It cannot be used for

subQ VIVA, though. I still have to stick twice for the truncated

sub q line weekly. The port we used to use for IVIG is now used for

monthly rocephin infusions. I actually insert the IV line in his port

myself.

The port insertion took less than 45 minutes under general and he had

little to no pain afterwards. It is under the skin and there is nothing

on the outside to get infected. It is just a small bump at his left

shoulder. had had his for about 1 year.

L

Re: Molly's Nightmare....or mine?

Terri -

I am literally running out the door and will try to call you from the

road and/or write more this evening. Dale is right...benedryl can make

monsters out of an already strong willed kiddo. It happened to mine.

Don't fret or even think about a port just yet...let's get our heads

together. , Dani's mom

[Guest guest]

Remind me how old she is?

Ursula - mom to (13) and Macey (11, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://members.cox.net/maceyh

[Guest guest]

-Molly is 6 and Maggie is 4....they just turned 6 and 4. I have a call

in to a child life specialist at one of the hospitals here....I have a

call in to her physician and I have a book that should be here any

time. She is also waiting to receive a CD from " songs of love " (if no

one has heard of this....it is something to look into for our young

ones). She is also waiting for a box of bravery beads from the Nevada

CHildhood Cancer FOundation.

Any other suggestions are greatly appreciated.

Terri

-- In , " Ursula Holleman " <uahollem1@...> wrote:

>

> Remind me how old she is?

>

> Ursula - mom to (13) and Macey (11, CVID)

> http://www.primaryimmune.org

> http://www.jmfworld.org

> http://members.cox.net/maceyh

>

>

>

[Guest guest]

I just sent in an application for my 4/12 year son to receive one

of the Songs of Love.

Please let us know what it is like when you receive it, ok?

Did you receive one of the Baxter MY IVIG Books and templates. Since my

son is visual, we use this and modify it for home infusions now.

L

Re: Molly's Nightmare....or mine?

-Molly is 6 and Maggie is 4....they just turned 6 and 4. I have a call

in to a child life specialist at one of the hospitals here....I have a

call in to her physician and I have a book that should be here any

time. She is also waiting to receive a CD from " songs of love " (if no

one has heard of this....it is something to look into for our young

ones). She is also waiting for a box of bravery beads from the Nevada

CHildhood Cancer FOundation.

Any other suggestions are greatly appreciated.

Terri

-- In groups (DOT) <mailto:%40> com, " Ursula

Holleman " <uahollem1@...> wrote:

>

> Remind me how old she is?

>

> Ursula - mom to (13) and Macey (11, CVID)

> http://www.primaryi <http://www.primaryimmune.org> mmune.org

> http://www.jmfworld <http://www.jmfworld.org> .org

> http://members. <http://members.cox.net/maceyh> cox.net/maceyh

>

>

>

[Guest guest]

Hi, Terri -

I assure you that it gets better, expecially when there is a mom as persistant

as you! Wow, you are on top of everything!

So, D. is getting her SCIG right now and I am thinking about your situation. I

am so sorry that Molly is struggling with it. We had some false starts with

la's SCIG and I was really upset...wanting to stop, but could not. There

were no other options for her; a port is too dangerous and she gets quirky stuff

like no one else...and like most PIDDers. LOL. So, buckets of sweat and tears

later she is doing great with SCIG and actually helps me now! At first, I hated

having to do " nursing " stuff and risk confusing the " mom " role. But, I know that

I can do SCIG better than the nurses...I am her mom and know her better than

anyone. I feel blessed to have the chance to have control over her infusions.

No one can do it better than mom. Terri, no one would else would notice that

the needles were hooking -- only mom's would notice these kind of details. Your

girls could not be in better hands, my friend.

Still, I can wrap my head around your situation and will do the best to support

you in finding answers.

1. Physical pain? Are you sure that Molly is not feeling pain?

Obviously, she did not have pain from needles, since you were not using them,

but is there a chance that she is trying to communicate that something hurts and

the only way she can express pain is by saying the needle hurts? For example,

could she be feeling stinging or intense itching at the infusion sites? This is

common. One way to minimize the burn is to make sure that you are using PLENTY

of EMLA (not generic or LMX). I pack it on and then leave it on for nearly an

hour. 30 min. is not adequate for our child. Others use ice-packs but my child

hates cold and would freak. When my DH and I knew with some level of certainty

that she was not feeling pain, we were okay with holding her still and covering

her with hugs and kisses. We no longer have to hold her because she has had

several success experiences. When she backslides (usually when she is not

feeling well) we have to pull out all of the stops all over again...distraction

and such and sometimes hold her

still.

2. Social Environment?

It sounds like you and your DH had a really rough day with SCIG. As you already

know, you kiddos pick up on this. They are aware of almost everything. If you

think that your DH is not going to be a calming presence, then try to assign him

to a different SCIG job. My DH is brilliant at running errands (toy runs,

snacks, etc.) and not as good at staying calm. No matter what happens, we have

to keep our cool with our kiddos -- then fall apart in private. = ) This is

not to say that I have never wept in front of my child. LOL.

3. Distraction?

I think you have this down. My kiddo is a dreader so we could not discuss what

we were doing. We would distract her in 10 different ways and then do the

needles matter-of-factly, like it was no big deal -- then melt down when she was

not around. Now she is totally okay with everything. And, when she does the

occasional fussy thing, I can tell her to " cut it out " and she listens -- and I

don't feel bad. btw, there was a study about dreaders and, for them, " exposure

therapy " and practice can make it worse...it just totally depends on the child.

4. Knowledge?

This did not work so well, at first. But, later, after her SCIG anxiety was

over, I would praise her to the moon and tell her that the immune globulin was

going to keep her well (explain stuff when the anxiety was not present). Now,

she can make the connection between meds and health. She loved seeing the

photos of your kids in IG Living. It made her feel " normal " .

5. ????. What else????. Maybe your social/psych/child life people have ideas.

About benedryl...I see that you have already ruled this out.

I just want to tell you a little more about our experience. It might not make a

different but please know that, after some really awful stuff, my kiddo can see

that mom has devoted herself to keeping her healthy. In her ways, she shows me

that she is grateful. Probably because she listens to way more than I realize,

she knows that I fought for her and she can trust me forever. Our relationship

and bond is stronger than ever - and, yes, we have had some really rought times

with the medical stuff...which affects all aspects of life. Because of

everything that we have been through together and all the SUCCESSES that she now

has in her mind's eye , she is stronger than she would have been otherwise --

our bond is stronger, not weaker. I could not have said this to you last year.

Things were so stressful and there was no one to guide us. We just had to

follow our instincts and because we have a very child centered (not parent

centered) home we were able to listen to our

kiddo and get things to work...and you will too!

I see that you are going to read and call for additional social/psych support

and I hope that helps you. You are a smart, loving, and capable mom and will do

what you need to for your children. They will notice that you are trying to do

right by them.

Hang in there and please do let me know when you plan on going to Disney! We

did not see EM over the weekend. Thanks for explaining how it is suppose to

work...as a surprise. <<WINK>>.

Hugs,

mom to Dani (4), CVID

[Guest guest]

...thanks and thanks everyone else for all the loving

support. One thing that I am learning....I am not the only one and

that makes me feel better. I totally agree that there is a time a

place for me to melt down and it definately was not in front of

Molly. I think the one thing that I have that is different...is that

I am going through it right beside my little ones. I know what they

feel so I can relate....interpret etc. One funny point....the

children complain loudly about the EMLA and I agree with them....the

more we use it, the more it burns all by itself. My 4 year old

complains loudly about the EMLA, but not at all about the SCIG. I do

think that Molly is equating the intense itching of the gammablobulin

to " pain " . She did have a good experience this last time...no pain

and no itching with the new needles....and she promises that it won't

happen next time the way it did this time. Yesterday, the girl's

went through 10 packs of Minimed needles that they snuck into, giving

their build a bears SCIG. Their bears were very brave...Molly kept

telling me that her bear was only one and was not upset at all!

Needless to say, I am very glad they did not poke themselves during

their sneaky attack or the may have had a very different impression

of SCIG next time as the minimed needles are very long compared to

others.

Terri

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

>

> Hi, Terri -

>

> I assure you that it gets better, expecially when there is a mom as

persistant as you! Wow, you are on top of everything!

>

> So, D. is getting her SCIG right now and I am thinking about your

situation. I am so sorry that Molly is struggling with it. We had

some false starts with la's SCIG and I was really

upset...wanting to stop, but could not. There were no other options

for her; a port is too dangerous and she gets quirky stuff like no

one else...and like most PIDDers. LOL. So, buckets of sweat and

tears later she is doing great with SCIG and actually helps me now!

At first, I hated having to do " nursing " stuff and risk confusing

the " mom " role. But, I know that I can do SCIG better than the

nurses...I am her mom and know her better than anyone. I feel

blessed to have the chance to have control over her infusions. No

one can do it better than mom. Terri, no one would else would notice

that the needles were hooking -- only mom's would notice these kind

of details. Your girls could not be in better hands, my friend.

>

> Still, I can wrap my head around your situation and will do the

best to support you in finding answers.

>

> 1. Physical pain? Are you sure that Molly is not feeling pain?

> Obviously, she did not have pain from needles, since you were not

using them, but is there a chance that she is trying to communicate

that something hurts and the only way she can express pain is by

saying the needle hurts? For example, could she be feeling stinging

or intense itching at the infusion sites? This is common. One way

to minimize the burn is to make sure that you are using PLENTY of

EMLA (not generic or LMX). I pack it on and then leave it on for

nearly an hour. 30 min. is not adequate for our child. Others use

ice-packs but my child hates cold and would freak. When my DH and I

knew with some level of certainty that she was not feeling pain, we

were okay with holding her still and covering her with hugs and

kisses. We no longer have to hold her because she has had several

success experiences. When she backslides (usually when she is not

feeling well) we have to pull out all of the stops all over

again...distraction and such and sometimes hold her

> still.

>

> 2. Social Environment?

> It sounds like you and your DH had a really rough day with SCIG.

As you already know, you kiddos pick up on this. They are aware of

almost everything. If you think that your DH is not going to be a

calming presence, then try to assign him to a different SCIG job. My

DH is brilliant at running errands (toy runs, snacks, etc.) and not

as good at staying calm. No matter what happens, we have to keep our

cool with our kiddos -- then fall apart in private. = ) This is not

to say that I have never wept in front of my child. LOL.

>

> 3. Distraction?

> I think you have this down. My kiddo is a dreader so we could not

discuss what we were doing. We would distract her in 10 different

ways and then do the needles matter-of-factly, like it was no big

deal -- then melt down when she was not around. Now she is totally

okay with everything. And, when she does the occasional fussy thing,

I can tell her to " cut it out " and she listens -- and I don't feel

bad. btw, there was a study about dreaders and, for them, " exposure

therapy " and practice can make it worse...it just totally depends on

the child.

>

> 4. Knowledge?

> This did not work so well, at first. But, later, after her SCIG

anxiety was over, I would praise her to the moon and tell her that

the immune globulin was going to keep her well (explain stuff when

the anxiety was not present). Now, she can make the connection

between meds and health. She loved seeing the photos of your kids

in IG Living. It made her feel " normal " .

>

> 5. ????. What else????. Maybe your social/psych/child life

people have ideas. About benedryl...I see that you have already

ruled this out.

>

> I just want to tell you a little more about our experience. It

might not make a different but please know that, after some really

awful stuff, my kiddo can see that mom has devoted herself to keeping

her healthy. In her ways, she shows me that she is grateful.

Probably because she listens to way more than I realize, she knows

that I fought for her and she can trust me forever. Our relationship

and bond is stronger than ever - and, yes, we have had some really

rought times with the medical stuff...which affects all aspects of

life. Because of everything that we have been through together and

all the SUCCESSES that she now has in her mind's eye , she is

stronger than she would have been otherwise -- our bond is stronger,

not weaker. I could not have said this to you last year. Things

were so stressful and there was no one to guide us. We just had to

follow our instincts and because we have a very child centered (not

parent centered) home we were able to listen to our

> kiddo and get things to work...and you will too!

>

> I see that you are going to read and call for additional

social/psych support and I hope that helps you. You are a smart,

loving, and capable mom and will do what you need to for your

children. They will notice that you are trying to do right by them.

>

> Hang in there and please do let me know when you plan on going to

Disney! We did not see EM over the weekend. Thanks for explaining

how it is suppose to work...as a surprise. <<WINK>>.

>

> Hugs,

>

> mom to Dani (4), CVID

>

>

>

>

[Guest guest]

I don't know if this has any bearing, but my daughter HATED doing the

infusions in her tummy. She has A LOT of chunk in the stomach area so we

assumed

this would be the ideal location for infusions, but we were wrong. They burned,

leaked, swelled, and in general made her miserable. We switched to her upper

thighs (fronts and sides) and she is absolutely fine with the infusions now.

Nettie is 16 and can articulate well when there is pain and discomfort so we

know that she is definately happier with her legs than her stomach. We also

found that the Emla cream is no longer effective (has this happened to anyone

else after using it for many years??) and we just let her use a pen to draw a

circle where she wants use to place the needles each time. We also split her

total dose into two smaller doses twice a week to reduce the volume of the

swelling she gets in her thighs. This has helped a lot and also made it easier

because it is infused at a slower rate allowing the fluid to be absorbed more

slowly.

Maybe Molly needs to be a part of the process (I know, WAY easier said than

done).

In my prayers,

Mommy to:

Annette 16yo, selective antibody deficiency, cp, devlopmental delays, g-tube,

hiv+, IVIG x 5 years, Sub Q IG x 1 yr now and LOVING it. Every bit a teenager

(both for the good and the bad ) LOL.

10yo, previous B and T cell deficiencies, IVIG x 1 year (off now over

2 years), daily prophylaxis, brain tumor survivor, hearing impaired, seizure

disorder, learning disabled, and one heck of a " WWE wrestler " !

Trayvon 7yo, Ivemark Syndrome, severe congenital heart defects, asplenia,

malrotated intestines, microcephalic, migraines, severe reflux and an

imagination

I can't keep up with for one minute!

Marriela 4yo, Micro premie (26 weeker, 1 lb, 12oz), NICU x 4 months, severe

asthma, devlopmental delays, mild cp, reflux, and gives us a serious run for

our money every single day!

and last but not least,

Cody 6mo, other than some reflux, a wonderfully happy and healthy baby.

God has a serious sense of humor now doesn't he! LOLOLOLOL

www.caringbridge.com/ny/my2angels

[Guest guest]

Terri -

Please let us know how your girls do with SCIG. We still have so much to learn

from eachother. I did not realize that some of our kids are getting " immune " to

EMLA. I love the bear story. You just made me remember that Dani was also

poking her puppets with needles when we started SCIG. I call that good coping!

= ) I can't imagine tying to do SCIG on myself and 2 kids. That must be so

trying -- especially when you are dripping blood from a bad needle and have to

act like everything is just fine. LOL. You are one strong lady!

May all of your wishes come true!

Dani's mom CVID