Quick Question

[Guest guest]

I was hoping it would get easier as she got older!! In reality, Tristen is

being such a trooper through all of this. She’s only 3 ½ and has some

anxiety and cries once she sees the needles but she doesn’t really fight me

too much. Today was my first day without the nurse and I had my mom come

over to sit with Tristen while I inserted the needles. She actually makes

more of a fuss when I take them out, not sure why though. We did end up

going to the pedi today during her infusion and he was super impressed with

how well she did with 4 needles/tubes in her leg. She unfortunately has

another sinus infection but she handles it all so well. I’m starting to

wonder if maybe my attempts of having her be a “normal” kid is going to

backfire on me. She goes to preschool 3 days a week for 2 ½ hours and

gymnastics once a week. She was able to go 2 months without being sick, but

she did just have sinus surgery to clean everything out, started SCIg and

has been on Augmentin the whole time too. AT what point do you say your

child’s health is more important than their being social? Now that she’s

old enough to realize she’s missing out on things, it’s so hard! I already

have to tell her she can’t have the same snacks as all the other kids or

bday treats because of her food allergies. I wish it all wasn’t so hard

sometimes.

le

_____

From: [mailto: ] On Behalf Of

Barbara Jimenez

Sent: Thursday, October 23, 2008 12:07 PM

Subject: Re: Quick question

How nice that would be. Lucas would rather be sick or dead. I know he really

does not want to but that is what he says. I cannot get him near his

infusion process. It has NEVER been a choice so this is just the way he is

handling it for now. It is such a pain to work with him about everything

right now. I am glad Macey has taken on the responsibility. You might see

what doing it in her love handles does. It is the only place Lucas will let

me infuse. I think it is less painful than the abdomen or legs. I am

diabetic and it works well for me too.

BARBIE

Re: Quick question

Macey is 13 so her infusions are her responsibility. She's infused herself

for alittle over a year now. She draws it up, checks her lot numbers and

sticks herself.

Right now with her stomach problem we are trying to encourage her to stick

her legs so that seems to be our biggest battle. But actually infusing is

her job and she's just always accepted the fact that this is what keeps her

in school, going to church and functioning so there really isn't any

discussion to it. It's a fact of life. We've never waivered on infusing or

not so it's not even up for discussion. She has on occasion quizzed her dad

about why he doesn't infuse but understands that when she is his age she

will have the choice. Until then she pops those needles in every week give

or take a day. We do allow for schedule problems but not by more than a day

in either direction.

Ursula - mom to (15) and Macey (13, CVID)

http://www.primaryi mmune.org

http://www.jmfworld .org

http://caringbridge .org/ga/macey/

[Guest guest]

I feel your pain. , also 12, doesn't want to do it anymore. I told him that

he can choose HOW he gets it (IVIG vs SubQ) NOT if he gets it. I also gave him a

3 day time period to get it done in. He feels more in control, so he is better.

Plus...Atarax does wonders an hr or two before. Calms him down and he doesn't

stress so much. The last one went well, but his infusion that is scheduled for

today, he just informed me we will do on Sat night. OK, but we will do it.

I think it's a control thing. He wants to be in control and that's OK. He's at

that age when the hormones are taking over. Grrrr, gotta hate hormones. Good

luck, and let me know what works for your son so I can try it on mine. LOL!

@...: mother5590@...: Thu, 23 Oct 2008

11:03:55 -0700Subject: Re: Quick question

HI everyone, Is anyone else having trouble getting their kids to do their

infusions. Lucas is being HORRIBLE. I already do it at night but he will not let

me right now. We are again 4 days late. Fortunately I used reverse peer pressure

and got blood work drawn last week. And his levels are great ( it was after

actually getting his infusion though) He is refusing to do sinus rinses, so his

nose is gross, and also his sub Q. He is 12 and I know he is sick of being sick

but I am just trying to figure out what to do. His doctor told me that it was my

responsibility until he turns 18. So basically I will have to take him to the

ER. UGH!!! What a waste of everyone's time and energy. His school principal even

talked to him about it yesterday. I have taken all his perks away etc but

remember this is a weekly issue. HELP!!!BARBIE

Quick questionTristen is sick with most likely another sinus infection, I'll

take her tothe pedi tomorrow. But tomorrow is her infusion day (my first day on

myown) can I still give her the infusion? I'm assuming yes, since most

kidsneeding SCIg are kids that are always sick. But I just wanted to

ask.Thanks,le

[Guest guest]

Yes, I have also tried that. I have done the same over the last 2 years and we

have limped along. I guess I am wondering when it is going to start making

better choices for his life in general. It is so hard to have to MAKE them do

this and yes it is not an option and I have never portrayed it as one. I just am

very tired of having to fight him about everything. I will keep you posted. This

has been going on for about 6wks now.

BARBIE

Quick

questionTristen is sick with most likely another sinus infection, I'll take her

tothe pedi tomorrow. But tomorrow is her infusion day (my first day on myown)

can I still give her the infusion? I'm assuming yes, since most kidsneeding SCIg

are kids that are always sick. But I just wanted to ask.Thanks,le

[Guest guest]

I wonder if we could get our kids to talk online. Or would it cause more

problems. I think it would help my son. He says that he wishes he knew JUST one

person that was like him. Let me know if you are willing. Lucas is in the 7th

grade.

BARBIE

Quick

questionTristen is sick with most likely another sinus infection, I'll take her

tothe pedi tomorrow. But tomorrow is her infusion day (my first day on myown)

can I still give her the infusion? I'm assuming yes, since most kidsneeding SCIg

are kids that are always sick. But I just wanted to ask.Thanks,le

[Guest guest]

The way I have to look at it is this way. At least he has the energy to fight

me. He is being a normal teenager. If it wasn't this, it would be his music,

grades, hair, etc. We fight about that too though. Hmmmmm...when did my sweet

baby morph into this ball of anger/smell/squeeky...well...you get it! LOL

@...: mother5590@...: Thu, 23 Oct 2008

13:58:07 -0700Subject: Re: Quick question

Yes, I have also tried that. I have done the same over the last 2 years and we

have limped along. I guess I am wondering when it is going to start making

better choices for his life in general. It is so hard to have to MAKE them do

this and yes it is not an option and I have never portrayed it as one. I just am

very tired of having to fight him about everything. I will keep you posted. This

has been going on for about 6wks now. BARBIE

Quick questionTristen is sick with most likely another sinus infection, I'll

take her tothe pedi tomorrow. But tomorrow is her infusion day (my first day on

myown) can I still give her the infusion? I'm assuming yes, since most

kidsneeding SCIg are kids that are always sick. But I just wanted to

ask.Thanks,le

[Guest guest]

Blake has a Face book page...I believe Macey(Ursula's girl) has one, too. I have

to kind of control Blake's use of the 'puter due to possibel seizures(the

lights0 & the fact he is autisitic.  Juulie....Blake is the page.  s is

the last name.

 

As far as teh refusal....we only allow for a 2 day lapse with Blake.

We just started sub-q last June. He seems fairly well with it as long as it is

done at night so he can go back to sleep after sticking him.... He does tell me

no when I turn on the light & walk towards teh bed, but he give up the fight

when I tell him, " We have 2 chioces. Either we do this now, or you can go

without, get sick & be in the hospital, but I promise, I will NOT stay with you

while you are there!! " Boy you can bet he does NOT want to be in the hospital

wothout his mom being around....

The reason I use this option, the Hospital where he would be admitted to is 2

hrs. away!!! Sometimes he will ask me what I plan on doing while he is in the

hospital...I tell him, " I'm going to Disney....It's a Wonderful Place to visit

at this time of the year!! "   He will reply, " Oh!!! Alright get it done " !!!!

 

http://www.facebook.com ...Just follow the prompts to make a page, then send out

the inivte a freind to everyone you want to invite...just tell us the name to

look for & we'll find ya soon!!!!

mom to Blake 16 SCID with Complete T-Cell Dysfunction.....lots of other issues

http://www3.caringbridge.org/sc/blakester

Come & see why I call him

The Greatest Adventure of MY Lifetime!!!!

" Children are like butterflies in the wind.

Some fly higher than others, BUT

each one flies the best they can!!!! "

From: Barbara Jimenez <mother5590@...>

Subject: Re: Quick question

Date: Thursday, October 23, 2008, 4:59 PM

I wonder if we could get our kids to talk online. Or would it cause more

problems. I think it would help my son. He says that he wishes he knew JUST one

person that was like him. Let me know if you are willing. Lucas is in the 7th

grade.

BARBIE

Quick

questionTristen is sick with most likely another sinus infection, I'll take her

tothe pedi tomorrow. But tomorrow is her infusion day (my first day on myown)

can I still give her the infusion? I'm assuming yes, since most kidsneeding SCIg

are kids that are always sick. But I just wanted to ask.Thanks,le

[Guest guest]

Thanks everyone for the responses. I finally did get Lucas to do it last night.

I drove towards the hospital after his counseling appt. He decided he was

willing. It is just so exhausting to fight him weekly. He has not been in the

hospital for a very long time. And he does not remember being REALLY sick

because he started IVIg at 3. He has done well most of the time. I know last

winter when he had pneumonia he was a monster so I know it would not be fun to

have a chronically sick kid with him again. I sometimes want to let him face

the consequences. He has already told me repeatedly that he will not do it when

he is 18. I told him that it is often the case for kids to try and that it works

out for some but for many others they get really sick and cannot do what they

want in life. He got quiet after that. I am looking into home schooling him. He

is so overwhelmed with school . The peer pressure and mean kids is AWFUL but

that is middle school for kids

these days . I think he is ready to try here at home for awhile. He is a very

social kid so I am going to have to get to work to get him involved elsewhere. I

would love to here others experiences on how to keep them busy.

BARBIE

________________________________

From: s <momtoboywholoveshisgoats@...>

Sent: Thursday, October 23, 2008 8:18:58 PM

Subject: Re: Quick question

Blake has a Face book page...I believe Macey(Ursula' s girl) has one, too. I

have to kind of control Blake's use of the 'puter due to possibel seizures(the

lights0 & the fact he is autisitic. Juulie....Blake is the page. s is

the last name.

As far as teh refusal....we only allow for a 2 day lapse with Blake.

We just started sub-q last June. He seems fairly well with it as long as it is

done at night so he can go back to sleep after sticking him.... He does tell me

no when I turn on the light & walk towards teh bed, but he give up the fight

when I tell him, " We have 2 chioces. Either we do this now, or you can go

without, get sick & be in the hospital, but I promise, I will NOT stay with you

while you are there!! " Boy you can bet he does NOT want to be in the hospital

wothout his mom being around....

The reason I use this option, the Hospital where he would be admitted to is 2

hrs. away!!! Sometimes he will ask me what I plan on doing while he is in the

hospital...I tell him, " I'm going to Disney....It' s a Wonderful Place to visit

at this time of the year!! " He will reply, " Oh!!! Alright get it done " !!!!

http://www.facebook .com ...Just follow the prompts to make a page, then send

out the inivte a freind to everyone you want to invite...just tell us the name

to look for & we'll find ya soon!!!!

mom to Blake 16 SCID with Complete T-Cell Dysfunction. ....lots of other issues

http://www3. caringbridge. org/sc/blakester

Come & see why I call him

The Greatest Adventure of MY Lifetime!!!!

" Children are like butterflies in the wind.

Some fly higher than others, BUT

each one flies the best they can!!!! "

From: Barbara Jimenez <mother5590 (DOT) com>

Subject: Re: Quick question

groups (DOT) com

Date: Thursday, October 23, 2008, 4:59 PM

I wonder if we could get our kids to talk online. Or would it cause more

problems. I think it would help my son. He says that he wishes he knew JUST one

person that was like him. Let me know if you are willing. Lucas is in the 7th

grade.

BARBIE

Quick

questionTristen is sick with most likely another sinus infection, I'll take her

tothe pedi tomorrow. But tomorrow is her infusion day (my first day on myown)

can I still give her the infusion? I'm assuming yes, since most kidsneeding SCIg

are kids that are always sick. But I just wanted to ask.Thanks,le

[Guest guest]

---I know he's had some issues before with

depression/anxiety......does he see a psych/therapist/child life

specialist? I think our most helpful route, when my daughter went thru

this, was working with a devel behavioral ped. she really came up with

a lot of good ideas to work on with her.....but when she was at the

point that Lucas is at, the ONLY thing that worked was Ativan, and

after she started calming down during infusions, then we worked on new

ways to handle it, then very, very slowly reduced the amount she was

taking. But I think she took it at least six months before we were at

that point. Some kids are more sensitive to things like this, I think.

For instance, getting into a bad car accident might really freak a

person out leaving them with post traumatic stress....and the same

accident might only upset another person, and they go right on with

their normal life.

We have been trialing off IVIG since July. Savannah, so far, has done

very well. My 6 yr old son, however, is NOT, and there was some

discussion today about him possibly restarting soon. When I mentioned

this to her, she completely came unglued, panicked, and went into a

loud rant about how we are NEVER restarting, I cant make her go back

there, on and on(and this conversation was about her brother, not

her). Thats going to be a nightmare when/if it ever happens and I

think we'll end up back at the same point we worked to overcome.

Its such a hard thing when you know it has to be done, but your child

isnt cooperative. And remember, too, that teens are typically caught

up in a mindset where nothing bad is going to happen to them......its

just hard for kids in this age group to realize it really might happen.

valarie

In , laura smith <iamlaurasmith@...> wrote:

>

>

> I feel your pain. , also 12, doesn't want to do it anymore. I

told him that he can choose HOW he gets it (IVIG vs SubQ) NOT if he

gets it. I also gave him a 3 day time period to get it done in. He

feels more in control, so he is better. Plus...Atarax does wonders an

hr or two before. Calms him down and he doesn't stress so much. The

last one went well, but his infusion that is scheduled for today, he

just informed me we will do on Sat night. OK, but we will do it.

>

> I think it's a control thing. He wants to be in control and that's

OK. He's at that age when the hormones are taking over. Grrrr, gotta

hate hormones. Good luck, and let me know what works for your son so I

can try it on mine. LOL!

>

>

>

> @...: mother5590@...: Thu, 23 Oct 2008 11:03:55

-0700Subject: Re: Quick question

>

>

>

>

> HI everyone, Is anyone else having trouble getting their kids to do

their infusions. Lucas is being HORRIBLE. I already do it at night but

he will not let me right now. We are again 4 days late. Fortunately I

used reverse peer pressure and got blood work drawn last week. And his

levels are great ( it was after actually getting his infusion though)

He is refusing to do sinus rinses, so his nose is gross, and also his

sub Q. He is 12 and I know he is sick of being sick but I am just

trying to figure out what to do. His doctor told me that it was my

responsibility until he turns 18. So basically I will have to take him

to the ER. UGH!!! What a waste of everyone's time and energy. His

school principal even talked to him about it yesterday. I have taken

all his perks away etc but remember this is a weekly issue.

HELP!!!BARBIE

Quick questionTristen is sick with most likely another sinus

infection, I'll take her tothe pedi tomorrow. But tomorrow is her

infusion day (my first day on myown) can I still give her the

infusion? I'm assuming yes, since most kidsneeding SCIg are kids that

are always sick. But I just wanted to ask.Thanks,le [Non-text

portions of this message have been removed] ____________ _________

_________ _________ _________ _________ _Want to read Hotmail messages

in Outlook? The Wordsmiths show you how.http://windowslive.

com/connect/ post/wedowindows live.spaces. live.com-

Blog-cns!20EE04FBC541789! 167.entry? ocid=TXT_ TAGLM_WL_

hotmail_092008[Non-text portions of this message have been

removed]

[Guest guest]

Belinda,

Thank you for the great info. My daughter has been on IVIG since

02/08 and in my little town in Naples, Florida there are 4 infusion

centers, but no children are allowed in them. We have a home health

nurse come to the house to put in a peripheral IV and every month and

it is a big ordeal. Any advice is wonderful. I am going tomorrow to

buy the pediatric cuff.

Joy

In , Hrib-Karpinski

<chribxxxxxxxxxx (DOT) xxxx wrote:

>

> Belinda,

> I know that you were out of the loop for a bit....so everyoneone

else, bear

> w/me for repeating.

>

> We had similar problems w/Zach. Our Immuno had said if we didn't

get

> access, she would give us no choice & have to put in a port. Well

here's

> what we do....1st, we put Emla from elbow to wrist on both arms, we

wrap it

> w/saran wrap (the nurses call him Emla boy). 2nd we make sure that

Zach's

> well hydrated & make him drink tons of water on the way to the

hospital.

> 3rd, 24 hrs before infusion we give no antihistimines or Tylenol

(these

> drugs sometimes constrict the veins), we don't premedicate for IVIg

until

> after he's accessed. 4th & most successfully, instead of the nurse

using a

> turniquite, we use a ped blood pressure cuff. This holds tighter &

makes

> the veins much chunkier. Since we've used the blood pressure cuff

we have

> literally accessed in one poke! This was a reccomendation of the

Amer Red

> Cross(and it works!)

>

> And we use the cuff for all blood draws too. Belive me, I didn't

want to

> have to mess w/a port either.

>

> Hope this helps,

>

> Wife to Tom, Mom to 6 1/2 yr Zach, ???(don't know the specific

type) PID, GERD,

> chronic sinusitis, IVIG

>

[Guest guest]

How about Sub Q??? It is so much easier and so much less traumatic if it is an

option for your family.

BARBIE

________________________________

From: joyvroman <joyvroman@...>

Sent: Monday, October 27, 2008 5:08:11 PM

Subject: Re: Quick question

Belinda,

Thank you for the great info. My daughter has been on IVIG since

02/08 and in my little town in Naples, Florida there are 4 infusion

centers, but no children are allowed in them. We have a home health

nurse come to the house to put in a peripheral IV and every month and

it is a big ordeal. Any advice is wonderful. I am going tomorrow to

buy the pediatric cuff.

Joy

In groups (DOT) com, Hrib-Karpinski

<chribxxxxxxxxxx (DOT) xxxx wrote:

>

> Belinda,

> I know that you were out of the loop for a bit....so everyoneone

else, bear

> w/me for repeating.

>

> We had similar problems w/Zach. Our Immuno had said if we didn't

get

> access, she would give us no choice & have to put in a port. Well

here's

> what we do....1st, we put Emla from elbow to wrist on both arms, we

wrap it

> w/saran wrap (the nurses call him Emla boy). 2nd we make sure that

Zach's

> well hydrated & make him drink tons of water on the way to the

hospital.

> 3rd, 24 hrs before infusion we give no antihistimines or Tylenol

(these

> drugs sometimes constrict the veins), we don't premedicate for IVIg

until

> after he's accessed. 4th & most successfully, instead of the nurse

using a

> turniquite, we use a ped blood pressure cuff. This holds tighter &

makes

> the veins much chunkier. Since we've used the blood pressure cuff

we have

> literally accessed in one poke! This was a reccomendation of the

Amer Red

> Cross(and it works!)

>

> And we use the cuff for all blood draws too. Belive me, I didn't

want to

> have to mess w/a port either.

>

> Hope this helps,

>

> Wife to Tom, Mom to 6 1/2 yr Zach, ???(don't know the specific

type) PID, GERD,

> chronic sinusitis, IVIG

>

[Guest guest]

you may want to check with your doctor and the manufacturer whether it is OK to

use that amount of emla. The skin is an organ and I would be concerned about too

much Lidocaine. It can be absorbed in to the blood stream. There are warnings on

the inserts. I do not know how much you are using and how much is OK for your

child. I would rather tell you and you get upset with me than for you have to

have a problem with it. I am a Pediatric nurse and although it sounds like a

good idea I would want to make sure.

BARBIE

________________________________

From: joyvroman <joyvroman@...>

Sent: Monday, October 27, 2008 5:08:11 PM

Subject: Re: Quick question

Belinda,

Thank you for the great info. My daughter has been on IVIG since

02/08 and in my little town in Naples, Florida there are 4 infusion

centers, but no children are allowed in them. We have a home health

nurse come to the house to put in a peripheral IV and every month and

it is a big ordeal. Any advice is wonderful. I am going tomorrow to

buy the pediatric cuff.

Joy

In groups (DOT) com, Hrib-Karpinski

<chribxxxxxxxxxx (DOT) xxxx wrote:

>

> Belinda,

> I know that you were out of the loop for a bit....so everyoneone

else, bear

> w/me for repeating.

>

> We had similar problems w/Zach. Our Immuno had said if we didn't

get

> access, she would give us no choice & have to put in a port. Well

here's

> what we do....1st, we put Emla from elbow to wrist on both arms, we

wrap it

> w/saran wrap (the nurses call him Emla boy). 2nd we make sure that

Zach's

> well hydrated & make him drink tons of water on the way to the

hospital.

> 3rd, 24 hrs before infusion we give no antihistimines or Tylenol

(these

> drugs sometimes constrict the veins), we don't premedicate for IVIg

until

> after he's accessed. 4th & most successfully, instead of the nurse

using a

> turniquite, we use a ped blood pressure cuff. This holds tighter &

makes

> the veins much chunkier. Since we've used the blood pressure cuff

we have

> literally accessed in one poke! This was a reccomendation of the

Amer Red

> Cross(and it works!)

>

> And we use the cuff for all blood draws too. Belive me, I didn't

want to

> have to mess w/a port either.

>

> Hope this helps,

>

> Wife to Tom, Mom to 6 1/2 yr Zach, ???(don't know the specific

type) PID, GERD,

> chronic sinusitis, IVIG

>

[Guest guest]

I'd like to upload my file but am having little luck using Dr Grim's

instructions. As it reads, " On the Hyperaldosteronism home page, go to

Files/Conn's Stories. You'll find instructions in " A - How to put your story

here.doc. "

Fairly straight forward instructions, however, clicking on the left side bar

link 'Files' takes me to a page that does not show a separate link for 'Conn's

Stories' or one for 'A - How to put yur story here.doc'.

There is an 'add file' link but I have no idea where the file will end up. Any

suggestions?

Barbara

[Guest guest]

Most of us just blame " Brain Fog " ! ;>)

- 65 yo super ob. male - 12mm X 13mm rt. a.adnoma with previous rt. flank

pain. Treating with DASH. 2-Day ave w/o meds = BP 133/77 HR 61 BS 132. D/C

Spironolactone 12/20/2011 due to adverse SX.

Other Issues/Opportunities: OSA w Bi-Pap settings 13/19, DM2, Gynecomastia, MDD

and PTSD.

Meds: Duloxetine hcl 80 MG, Metoprolol Tartrate 200 MG, 81mg aspirin and

Metformin 2000MG. Started washing Spironolactone 12/20/11 to prepare for AVS.

> >

> > I'd like to upload my file but am having little luck using Dr Grim's

instructions. As it reads, " On the Hyperaldosteronism home page, go to

Files/Conn's Stories. You'll find instructions in " A - How to put your story

here.doc. "

> >

> > Fairly straight forward instructions, however, clicking on the left side bar

link 'Files' takes me to a page that does not show a separate link for 'Conn's

Stories' or one for 'A - How to put yur story here.doc'.

> >

> > There is an 'add file' link but I have no idea where the file will end up.

Any suggestions?

> >

> > Barbara

> >

>