switching hospitals/adolescent tiredness

[Guest guest]

I could use some feedback on two issues. The first is that we have

been driving about 1 1/2 hrs every three weeks to get 's

infusions. It is getting kind of old! I was thinking of having our

family practice doctors handle the infusions (under the guiding of

the immuno doc) at our local hospital. My concerns are this: 1)they

have a very small -4 bed peds unit with no peds ICU 2) They do not

have a doc there on the floor which the hospital we are at now does.

I am worried that they would not be well equipped to handle something

serious if it were to occur. Am I worrying too much? Do you guys

think that it would be a good idea or not?

The second issue is 's extreme tiredness. The last month or

so she had been so, so tired. In between doing whatever is going on

for the day she is very quiet and just looks kind of " wilted " . She

just seems to have no energy or pep, both of which she is usually

full of unless she is very, very, very ill. Several of her friends'

moms have said that their daughters just lay around a lot too. So my

question is - is she just being an adolescent or is something wrong?

She says that she feels fine, but she just doesn't look fine! I

don't want to bring her in and have them start running a bunch of

tests when she is just being 12!

Sorry for being so long winded!

Kim, mom to , selective antibody deficiency

[Guest guest]

Several things come to mind when you mention moving the infusions to either a

smaller local hospital or home. First, is

the Family practice doctor comfortable with prescribing the medication at the

hospital? Our local pediatrician would

not order the infusions because she said she did not have the expertise to

handle a reaction situation. We were

referred to a local specialist who agreed to order and coordinate the infusions.

Second, wherever you go, whether it be

hospital or home, the infusion nurse needs to be PALS (Pediatric Advanced Life

Support) certified. Reactions can become

a life and death situation in a second and having staff who are adequately

trained to handle that is essential. If she

has no history of reactions (I can't remember how long now she's been getting

infused) then I would push for home

infusions. They are much easier, much more comfortable and even cheaper

sometimes.

Summer is a time to wilt. Even (our oldest who is not PID) seems to stay

lazy and lax-a-daisy. Does she seem to

be this way all year round or is this a new thing for her? How's her appetite?

Have you had a recent CBC to check her

hemoglobin? Maybe she's alittle anemic. Does she take a multivitamin? We've

started Macey on the Centrum Kids and

maybe it's wishful thinking but I think she's had more energy.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux,

Sensory Integration Disorder, Diabetes

Insipidus)

http://home.att.net/~maceyh/

[Guest guest]

Several things come to mind when you mention moving the infusions to either a

smaller local hospital or home. First, is

the Family practice doctor comfortable with prescribing the medication at the

hospital? Our local pediatrician would

not order the infusions because she said she did not have the expertise to

handle a reaction situation. We were

referred to a local specialist who agreed to order and coordinate the infusions.

Second, wherever you go, whether it be

hospital or home, the infusion nurse needs to be PALS (Pediatric Advanced Life

Support) certified. Reactions can become

a life and death situation in a second and having staff who are adequately

trained to handle that is essential. If she

has no history of reactions (I can't remember how long now she's been getting

infused) then I would push for home

infusions. They are much easier, much more comfortable and even cheaper

sometimes.

Summer is a time to wilt. Even (our oldest who is not PID) seems to stay

lazy and lax-a-daisy. Does she seem to

be this way all year round or is this a new thing for her? How's her appetite?

Have you had a recent CBC to check her

hemoglobin? Maybe she's alittle anemic. Does she take a multivitamin? We've

started Macey on the Centrum Kids and

maybe it's wishful thinking but I think she's had more energy.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux,

Sensory Integration Disorder, Diabetes

Insipidus)

http://home.att.net/~maceyh/

[Guest guest]

Kim,

I've been experiencing the same thing with my 11 yr old daughter. Although

there is nothing medically wrong, she has been sleeping 10-12 hours a night and

energyless during the day. Our ped said she could very well be going through a

growth cycle (she did grow almost 2 inches in about 3 mos). Give her a little

time before jumping the gun. One thing you might try since it's back to school

season, is offering to take her shopping. If she's like my daughter, she'll

jump at the chance and likely suddenly feel so much better.

Kim, mom to Linz 11 and Graham 6mos (Bruton's)

[Guest guest]

Kim,

I've been experiencing the same thing with my 11 yr old daughter. Although

there is nothing medically wrong, she has been sleeping 10-12 hours a night and

energyless during the day. Our ped said she could very well be going through a

growth cycle (she did grow almost 2 inches in about 3 mos). Give her a little

time before jumping the gun. One thing you might try since it's back to school

season, is offering to take her shopping. If she's like my daughter, she'll

jump at the chance and likely suddenly feel so much better.

Kim, mom to Linz 11 and Graham 6mos (Bruton's)

[Guest guest]

In a message dated 7/24/01 8:35:36 PM Pacific Daylight Time,

kaclight@... writes:

> we have

> been driving about 1 1/2 hrs every three weeks to get 's

> infusions. It is getting kind of old! I was thinking of having our

> family practice doctors handle the infusions (under the guiding of

> the immuno doc) at our local hospital.

,

This is a little late.......sorry. Up until last month we have travelled 4

hours (We go to LPCH at Stanford,Ca) one way for s infusions. For the

last 4 years. was diagnosed by the doctors there. Twice during this time

we had looked at getting s IV done in our local area. It could be done

but there where a few obstacles.......not always gauraunteed we'd get the

same med and the cost. It actually cost more in our local area than at

Stanford. (Including the drive down)

It could be done but bottom line was didn't want to change. LPCH is

like his home away from home. We stay at the RMH and everyone knows .

He has a bond with his nurses still has the same ones! So when asked to

switch to our local area at age 9 he cried and at age 11 he begged us not

to. So due to the fact I am able to take him every three weeks we have

decided at this time not to switch. Mentally it is important for .....he

doesn't stress if he knows we are going to stanford.

School has not been a problem to this point. But I know if has to go

back on IVIG we will have to look at our local area again for Jr high and

says he will be ready then.

Hope you were able to work the infusions around what works best for you. I

know at the conference most of the parents we talked to were getting it done

at home and didn't have any problems.

le

11, Selective Antibody Def., IVIG for 4 years, Syringomyelia

6 surgeries in two years before being diagnosed: 4 sinus, tonsil and adenoids

removed, septic hip since IVIG 0 surgery needed!

Trailing off IVIG 6/28/01

[Guest guest]

In a message dated 7/24/01 8:35:36 PM Pacific Daylight Time,

kaclight@... writes:

> we have

> been driving about 1 1/2 hrs every three weeks to get 's

> infusions. It is getting kind of old! I was thinking of having our

> family practice doctors handle the infusions (under the guiding of

> the immuno doc) at our local hospital.

,

This is a little late.......sorry. Up until last month we have travelled 4

hours (We go to LPCH at Stanford,Ca) one way for s infusions. For the

last 4 years. was diagnosed by the doctors there. Twice during this time

we had looked at getting s IV done in our local area. It could be done

but there where a few obstacles.......not always gauraunteed we'd get the

same med and the cost. It actually cost more in our local area than at

Stanford. (Including the drive down)

It could be done but bottom line was didn't want to change. LPCH is

like his home away from home. We stay at the RMH and everyone knows .

He has a bond with his nurses still has the same ones! So when asked to

switch to our local area at age 9 he cried and at age 11 he begged us not

to. So due to the fact I am able to take him every three weeks we have

decided at this time not to switch. Mentally it is important for .....he

doesn't stress if he knows we are going to stanford.

School has not been a problem to this point. But I know if has to go

back on IVIG we will have to look at our local area again for Jr high and

says he will be ready then.

Hope you were able to work the infusions around what works best for you. I

know at the conference most of the parents we talked to were getting it done

at home and didn't have any problems.

le

11, Selective Antibody Def., IVIG for 4 years, Syringomyelia

6 surgeries in two years before being diagnosed: 4 sinus, tonsil and adenoids

removed, septic hip since IVIG 0 surgery needed!

Trailing off IVIG 6/28/01

[Guest guest]

In a message dated 7/24/01 8:35:36 PM Pacific Daylight Time,

kaclight@... writes:

> we have

> been driving about 1 1/2 hrs every three weeks to get 's

> infusions. It is getting kind of old! I was thinking of having our

> family practice doctors handle the infusions (under the guiding of

> the immuno doc) at our local hospital.

,

This is a little late.......sorry. Up until last month we have travelled 4

hours (We go to LPCH at Stanford,Ca) one way for s infusions. For the

last 4 years. was diagnosed by the doctors there. Twice during this time

we had looked at getting s IV done in our local area. It could be done

but there where a few obstacles.......not always gauraunteed we'd get the

same med and the cost. It actually cost more in our local area than at

Stanford. (Including the drive down)

It could be done but bottom line was didn't want to change. LPCH is

like his home away from home. We stay at the RMH and everyone knows .

He has a bond with his nurses still has the same ones! So when asked to

switch to our local area at age 9 he cried and at age 11 he begged us not

to. So due to the fact I am able to take him every three weeks we have

decided at this time not to switch. Mentally it is important for .....he

doesn't stress if he knows we are going to stanford.

School has not been a problem to this point. But I know if has to go

back on IVIG we will have to look at our local area again for Jr high and

says he will be ready then.

Hope you were able to work the infusions around what works best for you. I

know at the conference most of the parents we talked to were getting it done

at home and didn't have any problems.

le

11, Selective Antibody Def., IVIG for 4 years, Syringomyelia

6 surgeries in two years before being diagnosed: 4 sinus, tonsil and adenoids

removed, septic hip since IVIG 0 surgery needed!

Trailing off IVIG 6/28/01