Re: Beth

[Guest guest]

Beth:

I'm right there with you in your concern about behavior. But in 's case,

she's two, so of course she's going to be a challenge.

But I keep wondering if her behavior problems are a result of being two years

old, or if they are a result of the bacterial meningitis she had at 5-1/2

months old. The docs had told us then that she's at much higher risk for

learning and behavior disorders because of it, so I'm left waiting and

watching. Or are her behavior problems a result of all the traumatic

experiences relating to the PID, i.e. testing and illnesses? Or am I being

paranoid and she's just a mischievous 2 yr old?

I'm now trying to read up on different ways I can support her, hoping to

" make up for " some of these things that are out of my control. A couple

people in the group suggested Seligman's " The Optimistic Child " , and

I'm reading it right now. So far it's really great!

(mom to , age 2, antibody def, IgA, IgM, IgG def - not on IGIV yet)

[Guest guest]

A book I have been looking at is the " Out of Sync child " I also have some

other literature I will be happy to share. BARBIE

[Guest guest]

Autumn,

I would love a list of your recommended books. Thanks!

(mom to , age 2, antibody def, IgA, IgM, IgG def - not on IGIV yet)

[Guest guest]

,

I have a wonderful list of other books if you are interested. I was the

original one that posted about the " Optimistic Child " . If you would like

some other very good, worthwhile and helpful titles let me know and I will

post them to the group.

Autumn (Mom to Mark Cd5-Cd19 PID and )

Re: Beth

> Beth:

>

> I'm right there with you in your concern about behavior. But in 's

case,

> she's two, so of course she's going to be a challenge.

>

> But I keep wondering if her behavior problems are a result of being two

years

> old, or if they are a result of the bacterial meningitis she had at 5-1/2

> months old. The docs had told us then that she's at much higher risk for

> learning and behavior disorders because of it, so I'm left waiting and

> watching. Or are her behavior problems a result of all the traumatic

> experiences relating to the PID, i.e. testing and illnesses? Or am I being

> paranoid and she's just a mischievous 2 yr old?

>

> I'm now trying to read up on different ways I can support her, hoping to

> " make up for " some of these things that are out of my control. A couple

> people in the group suggested Seligman's " The Optimistic Child " ,

and

> I'm reading it right now. So far it's really great!

>

> (mom to , age 2, antibody def, IgA, IgM, IgG def - not on IGIV

yet)

>

>

> 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.

>

>

[Guest guest]

Challenge your insurance company to come up with a competant immunologist.

Call and ask for a Nurse case manager to help you to problem solve to get

appropriate care for your son. The insurance companies do not want to take on

the liablity for not providing adequate care to patients. I do not know what

the rules are in your state but you can often work it out with the

insurance. You will have enough expenses out of pocket anyway the more you

can get a MD and the insurance to buy in the less you will be burdened with

expenses. I deal with insurance preauthorizations every day and it is the

squeaky wheel that gets what it needs in our present health care system.

BARBIE

[Guest guest]

Challenge your insurance company to come up with a competant immunologist.

Call and ask for a Nurse case manager to help you to problem solve to get

appropriate care for your son. The insurance companies do not want to take on

the liablity for not providing adequate care to patients. I do not know what

the rules are in your state but you can often work it out with the

insurance. You will have enough expenses out of pocket anyway the more you

can get a MD and the insurance to buy in the less you will be burdened with

expenses. I deal with insurance preauthorizations every day and it is the

squeaky wheel that gets what it needs in our present health care system.

BARBIE

[Guest guest]

Challenge your insurance company to come up with a competant immunologist.

Call and ask for a Nurse case manager to help you to problem solve to get

appropriate care for your son. The insurance companies do not want to take on

the liablity for not providing adequate care to patients. I do not know what

the rules are in your state but you can often work it out with the

insurance. You will have enough expenses out of pocket anyway the more you

can get a MD and the insurance to buy in the less you will be burdened with

expenses. I deal with insurance preauthorizations every day and it is the

squeaky wheel that gets what it needs in our present health care system.

BARBIE

[Guest guest]

Beth,

Thanks for the support. My pediatrician is complaining that I'm going out

of my insurance plan to see this immunologist, so I was having second

thoughts. But with your support and after reading all the postings every

night, I know I need to stick with our plan.

I really admire the strength you and everyone in the group has.

[Guest guest]

Beth,

Thanks for the support. My pediatrician is complaining that I'm going out

of my insurance plan to see this immunologist, so I was having second

thoughts. But with your support and after reading all the postings every

night, I know I need to stick with our plan.

I really admire the strength you and everyone in the group has.

[Guest guest]

Beth,

Thanks for the support. My pediatrician is complaining that I'm going out

of my insurance plan to see this immunologist, so I was having second

thoughts. But with your support and after reading all the postings every

night, I know I need to stick with our plan.

I really admire the strength you and everyone in the group has.

[Guest guest]

Hi Autumn,

Thanks for the advice..it worked. The story & picture were GREAT! It is so

inspirational to read how something that started so small(with the PedPid &

SCID groups) grew so large solely by word of mouth & the internet. You &

Mark did a wonderful job ( & the doctors,too). I am so glad that this

outpouring of love from so many people was able to lift his spirits, at

least a little!

How did today's tests go? Please let Mark know that we pray for him & your

family every day & Wade asks about him alot. He is going to email Mark

soon, he sid just now.

God Bless You All! Take care & Hugs to Mark, & your family from us!

Love,

Beth

At 09:30 PM 7/24/01 -0400, you wrote:

>Hi Beth,

>

>GO to www.theoaklandpress.com

>Once there, go to search and type in " Austin " the story will come up twice,

>click on the second line so that you can see the picture and the full text.

>This should work for you.

>

>Autumn (Mark Cd5-Cd19 PID and )

>

>

>

>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.

>

>

[Guest guest]

Hi Autumn,

Thanks for the advice..it worked. The story & picture were GREAT! It is so

inspirational to read how something that started so small(with the PedPid &

SCID groups) grew so large solely by word of mouth & the internet. You &

Mark did a wonderful job ( & the doctors,too). I am so glad that this

outpouring of love from so many people was able to lift his spirits, at

least a little!

How did today's tests go? Please let Mark know that we pray for him & your

family every day & Wade asks about him alot. He is going to email Mark

soon, he sid just now.

God Bless You All! Take care & Hugs to Mark, & your family from us!

Love,

Beth

At 09:30 PM 7/24/01 -0400, you wrote:

>Hi Beth,

>

>GO to www.theoaklandpress.com

>Once there, go to search and type in " Austin " the story will come up twice,

>click on the second line so that you can see the picture and the full text.

>This should work for you.

>

>Autumn (Mark Cd5-Cd19 PID and )

>

>

>

>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.

>

>

[Guest guest]

Hi Autumn,

Thanks for the advice..it worked. The story & picture were GREAT! It is so

inspirational to read how something that started so small(with the PedPid &

SCID groups) grew so large solely by word of mouth & the internet. You &

Mark did a wonderful job ( & the doctors,too). I am so glad that this

outpouring of love from so many people was able to lift his spirits, at

least a little!

How did today's tests go? Please let Mark know that we pray for him & your

family every day & Wade asks about him alot. He is going to email Mark

soon, he sid just now.

God Bless You All! Take care & Hugs to Mark, & your family from us!

Love,

Beth

At 09:30 PM 7/24/01 -0400, you wrote:

>Hi Beth,

>

>GO to www.theoaklandpress.com

>Once there, go to search and type in " Austin " the story will come up twice,

>click on the second line so that you can see the picture and the full text.

>This should work for you.

>

>Autumn (Mark Cd5-Cd19 PID and )

>

>

>

>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.

>

>

[Guest guest]

Beth,

I understand where you are right now. Take your time, get your balance back

and then bring yourself back here. Will miss you. Sometimes, we just have to

take breaks. You will be in my thoughts and prayers. Take care.

Much love,

Terry

[Guest guest]

Beth,

I understand where you are right now. Take your time, get your balance back

and then bring yourself back here. Will miss you. Sometimes, we just have to

take breaks. You will be in my thoughts and prayers. Take care.

Much love,

Terry

[Guest guest]

Beth,

I understand where you are right now. Take your time, get your balance back

and then bring yourself back here. Will miss you. Sometimes, we just have to

take breaks. You will be in my thoughts and prayers. Take care.

Much love,

Terry

[Guest guest]

Beth,

I am truly sorry to read your mail tonight. You have been a wonderful friend to

me since I have been here.

I wish you only the best, and I hope that you will not stay away for long.

Your work is much appreciated here Beth. You are very important and I know that

others feel the same. It takes a lot of hard work and dedication to run this

site.

Be well friend, and please re-consider leaving us Beth. It is a shame and I

will miss your posts.

Love, Sue #2

[Guest guest]

Beth,

I am truly sorry to read your mail tonight. You have been a wonderful friend to

me since I have been here.

I wish you only the best, and I hope that you will not stay away for long.

Your work is much appreciated here Beth. You are very important and I know that

others feel the same. It takes a lot of hard work and dedication to run this

site.

Be well friend, and please re-consider leaving us Beth. It is a shame and I

will miss your posts.

Love, Sue #2

[Guest guest]

Beth,

I am truly sorry to read your mail tonight. You have been a wonderful friend to

me since I have been here.

I wish you only the best, and I hope that you will not stay away for long.

Your work is much appreciated here Beth. You are very important and I know that

others feel the same. It takes a lot of hard work and dedication to run this

site.

Be well friend, and please re-consider leaving us Beth. It is a shame and I

will miss your posts.

Love, Sue #2

[Guest guest]

Yes, Dr. Haupert did Wade's surgery with the insta track but at that time

Children's Hospital did not have a machine & wouldn't buy one, so I had to

" pull in a few favors " & I was able to get a rep to bring one in for Dr.

Haupert to use for the day. I think that they have an Insta-track unit at

Providence & I konw they have one at Beaumont because we had to go to

Beaumont just hours before Wade's surgery & have the special scan done there

& then run back to Children's for the surgery. Food for thought....

Hope 's appointmant goes well, please keep me posted. Tell Dr. Haupert

we said " Hi " & if he needs another Insta -Track for , tell him to call

me

Take care! Hugs to the boys from us!

Beth (Mom to Wade, CVID,etc...)

Beth

Hi Beth,

Thanks for asking about us. We are all doing better. The asthma is still

kicking around in myself and the boys, but we are managing. goes in

for his CT on Monday. If the bones remain infected, then they said they

want to go in and do another sinus surgery. I plan to ask about the device

that you mentioned in your email. Dr. Haupert would be doing the surgery,

if need be. Is that who did Wade's last surgery, just wondering if he is

familiar with the Insta Track device.

Hope Wade is doing well (and you too!).

Autumn (Mom to Mark Cd5-Cd19 PID and )

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.

[Guest guest]

In a message dated 01/12/2002 4:03:46 PM Pacific Standard Time,

imasthrngirl@... writes:

> By the way, where on the body is the bite?

>

It is his eye, so that is the problem----

[Guest guest]

In a message dated 01/12/2002 4:03:46 PM Pacific Standard Time,

imasthrngirl@... writes:

> ? I will say a prayer for him and the family- just let us

>

thanks Traci- I meant to say this before I sent my last email!!!!!

[Guest guest]

Beth,

20 % of births is one in 5 not one in 4.

Oops.........I told you math wasn't my strong suit. LOL I stand corrected.

And yes I think that most of the women who had csections were in the

best interest of the babies and the mothers.

Rarely due to convenience of any person involved, but for certain

not always. Sometimes moms want the cesarean, sometimes it is at the

advice of her physician. It is between them to decide.Not me.

I know it's not your decision. I was asking for your opinion, which you also gave. Thank you.

A 15 year old attending a birth is not a five year old..Most 15 year

olds have had their periods and have an actual working knowlege of

the female body.More and more at the age of 15 are delivering

babies.We had around 100 fifteen year olds deliver last year out of

2300. We had 10 who were under 15.If families want their kids to

attend then thats their decision.

Isn't it sad that we have so many young mothers these days? I know they are unprepared for it. I was 26, married and owned a home when I had my first child, and it was still a shock. I agree that it is a family decision who should attend the birth. I hope that they are not judged for their decisions.

I love my job.That is why I continue to work in the field. I guess

it is hard for the lay person to understand that there are many

aspects to nursing other than childbirth itself in the field of

maternal child nursing.

Can you expand on this? What are you referring to?

Babies are resilient.Babies are amazing.The birth process will never

be a perfect process, but it is what all medical professionals

strive for.

Beth

Yes, babies are amazing creatures. I also think that birth is an amazing, natural process shouldn't be messed with unless there's a real problem. And that's what I'm striving for.

Clorinda

[Guest guest]

Beth,

Thank you for your comprehensive answer.

When a family doesnt have clothing, car seat, or formula, diapers or transportation to get to and from the Dr then you do your best to try to make arrangements through whatever means necessary.

Is this actually part of your job description? Or is this something that you have chosen to take on because you want what is best for the family?

You make referrals and accept phone calls in the middle of the night for months on

end answering questions from new moms who are either scared or unsure of how to handle such things as colic, ear aches constipation etc.....Many of these calls are referrred to their pediatricians but nurses often serve as the "go between" between the family and these resources.

Just want to make sure I understand. You mean you take phone calls in the middle of the night, if you are on the night shift, right? Certainly you don't take phone calls at home?

Care of our newborns does not end when the mom leaves the hospital.We see

many of our moms time after time.We try to provide educational venues for them to seek either improved child care skills, through parenting classes or direct them to places that provide birth control if that is their desire. We encourage young moms to finish school and help them find resources that allow them to return to school and often times direct them towards child care providers while they finish their education.

Again, is this something you are expected to do as a part of your job? Or is this something that you do just because you care?

Many nurses take a very personal interest in parents their infants by maintaining a

relationship with them long after they leave.I frequently see these babies at the grocery store with their parents and they remain on first name basis for many years.

That's great! Unfortunately, I did not experience this with any of the nurses from any of my children's births. Perhaps this is because they felt I was capable and didn't feel the need for further contact?

When a family leaves the hopsital many nurses feel like they have made a friend and sometimes even more importantly , made a difference.

Nursing isnt only medication administration, feeding, diapering and helping mothers with care for their bodies after a deilivery. It is much more than that. It is a responsiblility that most of us take very seriously and few of us leave at work when we go home after a shift of work

Beth

Well, thank goodness for nurses like you. We need more like you. Keep up the good work. And thanks again for the explanation.

Clorinda