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--- Scholz wrote:

>

>

> Hi Michele,

> My prayers are with you and I will be praying for

> you all day tomorrow.

> aslo goes in tomorrow for his IVIG. But this

> is only his second one,

> but it will be the first time that they use the

> central line which was put

> in on the 26th of May. But it seems that your

> little one does not tolerate

> it well at all. I hope does as well as he did

> last month. All he got

> was a fever and was tired. I pray that nothing more

> than that happens this

> time as well and I will pray that your little one

> handle it well and that

> you are able to rest as well.

>

> , wife to Preston, mother to Shelbie 8, Mandy

> 3, and 1

>

>

> Blessed be the Lord, my rock,

> who trains my hands for war,

> and my fingers for battle.

>

> My rock and my fortress,

> my stronghold and my deliverer,

> my shield, in whom I take refuge,

> who subdues the peoples under me.

>

> Psalm 144. 1-2

> infusion time again

>

>

Hi all!!

Iam new here I have a question how long do the infusions usually take?

SUsan

Mom to (4) (neutropenic and Igg sublass def., Evan (6) Abby Rose

(2) premmie no problems

> >From: and Michele

>

> >

> >

> >

> >Hi Everyone..

> >Hope everyone is well and enjoying the summer.

> >

> >Tomorrow is infusion day for IVIG. It is always met

> with anxiety and relief

> at the

> >same time. It seems to be such a mixed blessing.

> I so look forward to

> getting

> >the gamma but hate the after affects.

> >

> >This time we are trying an 18 hour infusion which

> means we will stay all

> night. (oh joy!).. (means mommy will be exhausted)

> >We are going to try Ultram after the infusion to

> try and ward off the mega

> headache

> >and after 5 weeks, we finally got a neuro referal

> for shands in

> gainesville.

> >It appears that Ultram can lower your seizure

> threshhold as well as some of

> the

> >other new medications for migraines, when used in

> children. So we are

> having

> >yet another nuerologist (hopefully the last) and

> another EEG, etc.

> >

> > is doing very very well. This is his 5th

> infusion since restarting

> IVIG

> >in February. I cant believe that they ever took

> him off of it (for the 3rd

> time)

> >because they know more than mom.. Oh well, once

> again I have proven that

> >parenting gives you special insight to your

> children's needs and

> sensitivity to

> >symptoms like no one else can have..

> >

> >I'm praying we dont get that boomer headache but

> fearing the worst.

> Hopefully

> >God will have mercy on this aging, tired mother and

> he won't have one.

> >

> >Blessings and health to all..

> >

> >Michele -mom to (12) IgG def,

> selective antibody def,

> migraines,

> >asthma, tummy troubles.

> >

> >

>

>------------------------------------------------------------------------

> >Congratulations to " INDIE-GRRL, " our latest ONElist

> of the Week.

> >http://www.onelist.com

> >Visit our homepage and share with us how ONElist is

> changing YOUR life!

>

>------------------------------------------------------------------------

> >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.

>

>

>

------------------------------------------------------------------------

> With more than 20 million e-mails exchanged daily...

> http://www.onelist.com

> ...ONElist is home to the liveliest discussions on

> the Internet!

>

------------------------------------------------------------------------

> 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.

>

===

and

(neutropenic and immune deficent)

mom to Evan 6, 4 and Abby Rose (almost 2)

_________________________________________________________

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Guest guest

--- Scholz wrote:

>

>

> Hi Michele,

> My prayers are with you and I will be praying for

> you all day tomorrow.

> aslo goes in tomorrow for his IVIG. But this

> is only his second one,

> but it will be the first time that they use the

> central line which was put

> in on the 26th of May. But it seems that your

> little one does not tolerate

> it well at all. I hope does as well as he did

> last month. All he got

> was a fever and was tired. I pray that nothing more

> than that happens this

> time as well and I will pray that your little one

> handle it well and that

> you are able to rest as well.

>

> , wife to Preston, mother to Shelbie 8, Mandy

> 3, and 1

>

>

> Blessed be the Lord, my rock,

> who trains my hands for war,

> and my fingers for battle.

>

> My rock and my fortress,

> my stronghold and my deliverer,

> my shield, in whom I take refuge,

> who subdues the peoples under me.

>

> Psalm 144. 1-2

> infusion time again

>

>

Hi all!!

Iam new here I have a question how long do the infusions usually take?

SUsan

Mom to (4) (neutropenic and Igg sublass def., Evan (6) Abby Rose

(2) premmie no problems

> >From: and Michele

>

> >

> >

> >

> >Hi Everyone..

> >Hope everyone is well and enjoying the summer.

> >

> >Tomorrow is infusion day for IVIG. It is always met

> with anxiety and relief

> at the

> >same time. It seems to be such a mixed blessing.

> I so look forward to

> getting

> >the gamma but hate the after affects.

> >

> >This time we are trying an 18 hour infusion which

> means we will stay all

> night. (oh joy!).. (means mommy will be exhausted)

> >We are going to try Ultram after the infusion to

> try and ward off the mega

> headache

> >and after 5 weeks, we finally got a neuro referal

> for shands in

> gainesville.

> >It appears that Ultram can lower your seizure

> threshhold as well as some of

> the

> >other new medications for migraines, when used in

> children. So we are

> having

> >yet another nuerologist (hopefully the last) and

> another EEG, etc.

> >

> > is doing very very well. This is his 5th

> infusion since restarting

> IVIG

> >in February. I cant believe that they ever took

> him off of it (for the 3rd

> time)

> >because they know more than mom.. Oh well, once

> again I have proven that

> >parenting gives you special insight to your

> children's needs and

> sensitivity to

> >symptoms like no one else can have..

> >

> >I'm praying we dont get that boomer headache but

> fearing the worst.

> Hopefully

> >God will have mercy on this aging, tired mother and

> he won't have one.

> >

> >Blessings and health to all..

> >

> >Michele -mom to (12) IgG def,

> selective antibody def,

> migraines,

> >asthma, tummy troubles.

> >

> >

>

>------------------------------------------------------------------------

> >Congratulations to " INDIE-GRRL, " our latest ONElist

> of the Week.

> >http://www.onelist.com

> >Visit our homepage and share with us how ONElist is

> changing YOUR life!

>

>------------------------------------------------------------------------

> >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.

>

>

>

------------------------------------------------------------------------

> With more than 20 million e-mails exchanged daily...

> http://www.onelist.com

> ...ONElist is home to the liveliest discussions on

> the Internet!

>

------------------------------------------------------------------------

> 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.

>

===

and

(neutropenic and immune deficent)

mom to Evan 6, 4 and Abby Rose (almost 2)

_________________________________________________________

Link to comment
Share on other sites

Guest guest

--- Scholz wrote:

>

>

> Hi Michele,

> My prayers are with you and I will be praying for

> you all day tomorrow.

> aslo goes in tomorrow for his IVIG. But this

> is only his second one,

> but it will be the first time that they use the

> central line which was put

> in on the 26th of May. But it seems that your

> little one does not tolerate

> it well at all. I hope does as well as he did

> last month. All he got

> was a fever and was tired. I pray that nothing more

> than that happens this

> time as well and I will pray that your little one

> handle it well and that

> you are able to rest as well.

>

> , wife to Preston, mother to Shelbie 8, Mandy

> 3, and 1

>

>

> Blessed be the Lord, my rock,

> who trains my hands for war,

> and my fingers for battle.

>

> My rock and my fortress,

> my stronghold and my deliverer,

> my shield, in whom I take refuge,

> who subdues the peoples under me.

>

> Psalm 144. 1-2

> infusion time again

>

>

Hi all!!

Iam new here I have a question how long do the infusions usually take?

SUsan

Mom to (4) (neutropenic and Igg sublass def., Evan (6) Abby Rose

(2) premmie no problems

> >From: and Michele

>

> >

> >

> >

> >Hi Everyone..

> >Hope everyone is well and enjoying the summer.

> >

> >Tomorrow is infusion day for IVIG. It is always met

> with anxiety and relief

> at the

> >same time. It seems to be such a mixed blessing.

> I so look forward to

> getting

> >the gamma but hate the after affects.

> >

> >This time we are trying an 18 hour infusion which

> means we will stay all

> night. (oh joy!).. (means mommy will be exhausted)

> >We are going to try Ultram after the infusion to

> try and ward off the mega

> headache

> >and after 5 weeks, we finally got a neuro referal

> for shands in

> gainesville.

> >It appears that Ultram can lower your seizure

> threshhold as well as some of

> the

> >other new medications for migraines, when used in

> children. So we are

> having

> >yet another nuerologist (hopefully the last) and

> another EEG, etc.

> >

> > is doing very very well. This is his 5th

> infusion since restarting

> IVIG

> >in February. I cant believe that they ever took

> him off of it (for the 3rd

> time)

> >because they know more than mom.. Oh well, once

> again I have proven that

> >parenting gives you special insight to your

> children's needs and

> sensitivity to

> >symptoms like no one else can have..

> >

> >I'm praying we dont get that boomer headache but

> fearing the worst.

> Hopefully

> >God will have mercy on this aging, tired mother and

> he won't have one.

> >

> >Blessings and health to all..

> >

> >Michele -mom to (12) IgG def,

> selective antibody def,

> migraines,

> >asthma, tummy troubles.

> >

> >

>

>------------------------------------------------------------------------

> >Congratulations to " INDIE-GRRL, " our latest ONElist

> of the Week.

> >http://www.onelist.com

> >Visit our homepage and share with us how ONElist is

> changing YOUR life!

>

>------------------------------------------------------------------------

> >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.

>

>

>

------------------------------------------------------------------------

> With more than 20 million e-mails exchanged daily...

> http://www.onelist.com

> ...ONElist is home to the liveliest discussions on

> the Internet!

>

------------------------------------------------------------------------

> 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.

>

===

and

(neutropenic and immune deficent)

mom to Evan 6, 4 and Abby Rose (almost 2)

_________________________________________________________

Link to comment
Share on other sites

Guest guest

Hi ,

just had his second IVIG treatment today. the first one took from

8:30 am to 3:00 pm. But the actual IV was not started until about 10 am

because they had a really hard time getting an IV started. He had a Broviac

(central Line) put in the 26th of May to aid in future blood draws and IV's

because his veins are so bad due to all the IV's and blood draws he has had

with all of the other problems he has had. Anyway today's only lasted from

8:30 to noon and they didn't even start it until about 9:30. So it went

alot faster. does really well with the treatments so far. He ran a

little fever both times and they gave him a little tylonal and he was fine.

About the only real advice I can give is to make sure you write down the

name of the product used, the lot number, the experation date into a record

to be kept for future referances. And I would also be sure to take alot of

entertaining activities and maybe a snack/drink each time to make the time

go faster and kill the hunger pains.

Anyhow that is about all I know to tell you since I am so new myself.

God Bless,

, wife to Preston, mother to Shelbie 8, Mandy 3, 13 months

(ex-28+6 week preemie, Grade 4 IVH, Multiloculated Hydrocephalus, CP,

Vescour. Reflux, ROP, Strabusmis,Broviac, VP Shunt, Multiple severe food

allergies, Allergic to Latex, Hypogammaglobulinemia (IgG deficient, subclass

1-4 deficient), IVIG.

Then everyone who calls on the name of the Lord

shall be saved.

Acts 2.21

infusion time again

>>

>>

>Hi all!!

>

>Iam new here I have a question how long do the infusions usually take?

>

>SUsan

>

>Mom to (4) (neutropenic and Igg sublass def., Evan (6) Abby Rose

>(2) premmie no problems

>

>

>> >From: and Michele

>>

>> >

>> >

>> >

>> >Hi Everyone..

>> >Hope everyone is well and enjoying the summer.

>> >

>> >Tomorrow is infusion day for IVIG. It is always met

>> with anxiety and relief

>> at the

>> >same time. It seems to be such a mixed blessing.

>> I so look forward to

>> getting

>> >the gamma but hate the after affects.

>> >

>> >This time we are trying an 18 hour infusion which

>> means we will stay all

>> night. (oh joy!).. (means mommy will be exhausted)

>> >We are going to try Ultram after the infusion to

>> try and ward off the mega

>> headache

>> >and after 5 weeks, we finally got a neuro referal

>> for shands in

>> gainesville.

>> >It appears that Ultram can lower your seizure

>> threshhold as well as some of

>> the

>> >other new medications for migraines, when used in

>> children. So we are

>> having

>> >yet another nuerologist (hopefully the last) and

>> another EEG, etc.

>> >

>> > is doing very very well. This is his 5th

>> infusion since restarting

>> IVIG

>> >in February. I cant believe that they ever took

>> him off of it (for the 3rd

>> time)

>> >because they know more than mom.. Oh well, once

>> again I have proven that

>> >parenting gives you special insight to your

>> children's needs and

>> sensitivity to

>> >symptoms like no one else can have..

>> >

>> >I'm praying we dont get that boomer headache but

>> fearing the worst.

>> Hopefully

>> >God will have mercy on this aging, tired mother and

>> he won't have one.

>> >

>> >Blessings and health to all..

>> >

>> >Michele -mom to (12) IgG def,

>> selective antibody def,

>> migraines,

>> >asthma, tummy troubles.

>> >

>> >

>>

>>------------------------------------------------------------------------

>> >Congratulations to " INDIE-GRRL, " our latest ONElist

>> of the Week.

>> >http://www.onelist.com

>> >Visit our homepage and share with us how ONElist is

>> changing YOUR life!

>>

>>------------------------------------------------------------------------

>> >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.

>>

>>

>>

>------------------------------------------------------------------------

>> With more than 20 million e-mails exchanged daily...

>> http://www.onelist.com

>> ...ONElist is home to the liveliest discussions on

>> the Internet!

>>

>------------------------------------------------------------------------

>> 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.

>>

>

>===

> and

>(neutropenic and immune deficent)

>mom to Evan 6, 4 and Abby Rose (almost 2)

>_________________________________________________________

>

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