Re: help with IVIG information

March 3, 2005

TRICIA,

I am not sure how much help I will be, but I will try. My son has selective

Iga def and therefore does not receive IVIG, but I am pregnant and am

receiving IVIG because my baby has thrombocytopenia....a low platelet/bleeding

disorder.

When I received my first IVIG, it was in the hospital and I did recieve a bag

of fluids at the same time. Fluids also help minimize the side effects..at

least on pregnant adults. So, I am not sure how the fluids will effect his

other medication, but it may be that they can run a bag or so of fluids to help.

Also, I do not know what type of bleeding disorder he has, but if it is

similiar to what my baby has, I know one of the treatments for it is IVIG, so I

wonder if the IVIG will help the bleeding disorder also???

Let us know how he does!

Pam

March 3, 2005

from Dale, Mom to Katy, CVID, age 20

Tricia,

I hope you are experienced with the blood disorder because I'm not! And

when I see blood especially coming out of the ear -- I run to the

nearest doctor. But, I'm assuming that's a pretty normal emergency for

you.

I'm sorry that your boys are having troubles. IVIG is given at

prescribed rate of 400-800 mg/kg of body weight. But, since this is

first time -- it could be anything less than that. Now, it can also

come as a 5% or a 10% solution. So, you need to make sure that your

prescribing doctor of IVIG knows that there is a fluid problem.

For kids with fluid retention problems, IVIG can be mixed at various

solution strengths. I'm not going to even guess how much they will give

your boys tomorrow -- but I would certainly call the infusion center

very early tomorrow -- if you can't reach them tonight and warn them

that they may or may not be able to take the IVIG depending on the

solution ordered.

Hope that helps, and I'm sorry things are a mess there.

In His service,

Dale

funtricia77 wrote:

>

> BOTH MY 6 YEAR OLD TWIN BOYS WERE DIAGNOSED WITH COMMON VARIABLE AND

> TOMARROW IS OUR FIRST IVIG. I AM WONDERING IF ANY ONE CAN TELL ME

> WHAT WE SHOULD EXPECT. I AM ALSO IN A BIT OF AN EMERGANCY AT OUR

> HOUSE AND NEEDED TO KNOW SOME INFORMATION ABOUT TOMARROW. MY SON

> BRIAN HAS A BLEEDING DISORDER AND FOR NO REASON STARTED BLEEDING OUT

> OF HIS EAR. I CALLED THE ENT ON CALL AND HE SAID TO GO AHEAD AND

> GIVE HIM HIS BLEEDING MEDICINE. HE ALSO SAID IF IT DOESNT STOP THEN

> TO GO TO THE EMERGENCY ROOM. WELL IF I GIVE HIM HIS SPECIAL BLEEDING

> MEDICINE THEN HE HAS TO HAVE RESTRICTED FLUIDS FOR THE NEXT FEW

> DAYS. MY QUESTION IS HOW MUCH FLUID WILL HE GET DURING THE IVIG

> TOMARROW IF ANY AT ALL?? I AM JUST NOT SURE WHAT TO DO WITH HIM. HE

> JUST SNEEZED AND BLOOD IS COMING OUT OF HIS NOSE NOW MIXED WITH

> CLEAR STUFF BUT THE BLOOD IN HIS EAR IS BRIGHT RED. THE ER DOC SAID

> HIS TUBE PROBABLY CAME LOOSE AND CAUSED HIM TO BLEED. ALSO CURUIS AS

> TO WHAT THE NORMAL DOSE FOR IVIG IS? THANKS!!! TRICIA

>

> 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.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to: /messages

>

March 3, 2005

hi , thanks for the info.

i have not given brian the bleeding medicine yet as i am hoping it will

stop. i am usused to seeing blood in his ear. this was the 3rd set of tubes

he has had put in, i guess we will be getting a 4th set soon. but when his

ear does bleed its just a tiny bit of blood. this time it was pouring out

his ear and down his neck. its been 2 1/2 hours and still bleeding. just

slowly now. if i can hold him off on the medicine, maybe he can get seen

tomarrow morning. i have to leave at 6 am just to get there by 9 am. its

gonna be one long day!

i also notified the nuerologists of my boys. jason has severe seizure

disorder along with landau kleffner, and lennox gastaut. his nuero said to

make sure they give him 2g/kg. is that anything near what you mentioned?? is

there anything else i should expect tomarrow? anything i should bring with?

i am a bit anxious and cant wait to see the results of the ivig. i hope i

sleep tonight! thanks for your help!. tricia

Re: help with IVIG information

>

> from Dale, Mom to Katy, CVID, age 20

>

> Tricia,

>

> I hope you are experienced with the blood disorder because I'm not! And

> when I see blood especially coming out of the ear -- I run to the

> nearest doctor. But, I'm assuming that's a pretty normal emergency for

> you.

>

> I'm sorry that your boys are having troubles. IVIG is given at

> prescribed rate of 400-800 mg/kg of body weight. But, since this is

> first time -- it could be anything less than that. Now, it can also

> come as a 5% or a 10% solution. So, you need to make sure that your

> prescribing doctor of IVIG knows that there is a fluid problem.

>

> For kids with fluid retention problems, IVIG can be mixed at various

> solution strengths. I'm not going to even guess how much they will give

> your boys tomorrow -- but I would certainly call the infusion center

> very early tomorrow -- if you can't reach them tonight and warn them

> that they may or may not be able to take the IVIG depending on the

> solution ordered.

>

> Hope that helps, and I'm sorry things are a mess there.

>

> In His service,

> Dale

>

> funtricia77 wrote:

> >

> > BOTH MY 6 YEAR OLD TWIN BOYS WERE DIAGNOSED WITH COMMON VARIABLE AND

> > TOMARROW IS OUR FIRST IVIG. I AM WONDERING IF ANY ONE CAN TELL ME

> > WHAT WE SHOULD EXPECT. I AM ALSO IN A BIT OF AN EMERGANCY AT OUR

> > HOUSE AND NEEDED TO KNOW SOME INFORMATION ABOUT TOMARROW. MY SON

> > BRIAN HAS A BLEEDING DISORDER AND FOR NO REASON STARTED BLEEDING OUT

> > OF HIS EAR. I CALLED THE ENT ON CALL AND HE SAID TO GO AHEAD AND

> > GIVE HIM HIS BLEEDING MEDICINE. HE ALSO SAID IF IT DOESNT STOP THEN

> > TO GO TO THE EMERGENCY ROOM. WELL IF I GIVE HIM HIS SPECIAL BLEEDING

> > MEDICINE THEN HE HAS TO HAVE RESTRICTED FLUIDS FOR THE NEXT FEW

> > DAYS. MY QUESTION IS HOW MUCH FLUID WILL HE GET DURING THE IVIG

> > TOMARROW IF ANY AT ALL?? I AM JUST NOT SURE WHAT TO DO WITH HIM. HE

> > JUST SNEEZED AND BLOOD IS COMING OUT OF HIS NOSE NOW MIXED WITH

> > CLEAR STUFF BUT THE BLOOD IN HIS EAR IS BRIGHT RED. THE ER DOC SAID

> > HIS TUBE PROBABLY CAME LOOSE AND CAUSED HIM TO BLEED. ALSO CURUIS AS

> > TO WHAT THE NORMAL DOSE FOR IVIG IS? THANKS!!! TRICIA

> >

> > 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.

> >

> > To unsubscribe -unsubscribegroups (DOT)

> > To search group archives go to:

/messages

> >

March 3, 2005

from Dale, Mom to Katy, CVID, age 20

Tricia,

Neurologists use IVIG to treat a lot of neuro disorders at a much higher

dosage than what is given for CVID. So, I can't say what your doctor

might have ordered.

Most of our kids that start IVIG experience some discomfort the first

few times. First it's an IV -- so there's the stick. Then some of the

kids sleep all day, some run around and do activities -- watch movies or

play with computer games, etc. My daughter always took art projects to

work on because it takes SOOO long right at the beginning because they

have to go so slowly.

Some of the perfectly normal side effects are fever, chills, headaches,

muscle aches, back aches. Some of the more serious side effects would

be blood pressure changes, severe headaches, that would require them to

slow down the infusion. My daughter complained of her arm aching where

the IV was running -- we found that hot packs on her arm helped that.

But slowing the infusion down helped the most. Many patients have

flu-like symptoms following their first 3 to 6 IV's just because the

IVIG contains the immune system that they are missing and it starts

attacking the germs immediately. So, they actually feel sick for a

couple of days -- that usually goes away after several infusions because

the IVIG has killed out all the germs that were just hanging around.

But, some kids act like nothing happened -- and they go straight from

IV's to dance class or to play basketball. So-- it just depends on the

kid and the amount of germs hanging around. Just about everyone agrees

that the first few infusions are the worst and everything gets better

after the first few are over with. There are a few very rare cases that

are really nasty -- nasty naseau or severe headaches, etc. I don't want

you to think that it never happens because there are people on this list

who will tell you differently -- but it is very rare. And as far as I

know the doctors have been able to deal with everything that has come up

-- no deaths or permanent injury that I know of! Yeah!

Will you do both boys tomorrow?

Be sure and bring something for you to do -- I forgot that the first

couple of times and Katy wanted to sleep. Also, pack snacks for

yourself as well as the boys. Many infusion centers want you to go to

the cafeteria and Katy didn't want me to leave her. So, I just packed

cheese and crackers and fruit, etc. so we wouldn't starve before we

could get back home.

Hope tomorrow is totally uneventful and VERY boring!

In His service,

Dale

PATRICIA EUMANA wrote:

>

> his nuero said to

> make sure they give him 2g/kg. is that anything near what you mentioned?? is

> there anything else i should expect tomarrow? anything i should bring with?

>

March 4, 2005

good morning,

well i never took brian to the er, i just let his ear dry up. there was

actually blood on his pillow when i went to bed so i hope it stopped

bledding. i think that he can get seen while we are at the hospital for the

IVIG today.

yes both my boys are going for the IVIG. the bleeding disorder brian has is

qualitative plattlete function defect. he has to wear a medical alert

braclet at all times. jason wears one to because of his severe seizures. we

have had a long week already. jason had an endoscopy and colonscopy on

monday , then the infectious disease on tuesday, back to the gi for results

on wednesday. only to find out that he needs the colonoscopy redone and

brian will be getting one as well. then yesterday was supposed to be my day

off but my daughter came home with pink eye in the morning from school and

had to get to the doctor and here i am today on my way for the IVIG. there

is no school today so i hope i can bring my 8 year old daughter with. i am

so sick of running, and this is usually how a typical week is for us. my

boys have missed so many days of kindergarten. and i am so tired, i just

hope the ivig works. thanks for everyones advice and words of encouragement.

i did pack lunchables to bring with and will pack some toys. the crafts

sound good too! i will let you know how it goes when we get back tonight.

although i do have another question? do most of the kids here go to the

hospital for infusion or do they get a home nurse or do it them selves? our

doctor was talking about getting a nurse to come to our house but only if

insurance will cover it. thanks for all your help. will write again tonight.

thanks tricia

Re: help with IVIG information

>

> TRICIA,

>

> I am not sure how much help I will be, but I will try. My son has

selective

> Iga def and therefore does not receive IVIG, but I am pregnant and am

> receiving IVIG because my baby has thrombocytopenia....a low

platelet/bleeding

> disorder.

>

> When I received my first IVIG, it was in the hospital and I did recieve a

bag

> of fluids at the same time. Fluids also help minimize the side

effects..at

> least on pregnant adults. So, I am not sure how the fluids will effect

his

> other medication, but it may be that they can run a bag or so of fluids to

help.

> Also, I do not know what type of bleeding disorder he has, but if it is

> similiar to what my baby has, I know one of the treatments for it is IVIG,

so I

> wonder if the IVIG will help the bleeding disorder also???

>

> Let us know how he does!

> Pam

>

March 4, 2005

from Dale, Mom to Katy, CVID, age 20

Tricia, best wishes for today -- I'll be praying for you and the boys.

Our doctor wanted to do 3 infusions in the hospital infusion center

before she let us do it with a nurse at home - that's again because

those first ones can be rough. After that we had a nurse come to our

home for years. It was wonderful!

But this year Katy wanted to try a new method of infusion called Sub-Q

and she is able to do it herself once a week without a nurse! She's

loving the freedom. Several kids on the list are trying this new method

and most have had success with it.

Having a nurse come to the home really took a lot of stress out of the

day -- having to pack, do without food, etc. We just rented special

movies or saved special art projects for Katy to make the day special.

She could stay in her pajamas all day and do as she pleased. She

even baked cookies and made candy while getting the IV. She thought

that was pretty cool!

Gotta run, but know that everyone on this list is thinking of you and

some of us are praying for you even as you are in the middle of your

infusion. May God grant you strength and wisdom and peace for the day.

In His service,

Dale

PATRICIA EUMANA wrote:

do most of the kids here go to the

> hospital for infusion or do they get a home nurse or do it them selves? our

> doctor was talking about getting a nurse to come to our house but only if

> insurance will cover it. thanks for all your help. will write again tonight.

>

March 4, 2005

In a message dated 3/3/2005 6:22:52 PM Pacific Standard Time,

EUMANAFAMILY@... writes:

I CALLED THE ENT ON CALL AND HE SAID TO GO AHEAD AND

GIVE HIM HIS BLEEDING MEDICINE. HE ALSO SAID IF IT DOESNT STOP THEN

TO GO TO THE EMERGENCY ROOM. WELL IF I GIVE HIM HIS SPECIAL BLEEDING

Tricia,

Is bleeding from the ear normal for him?? I'm sure that nosebleeds are,

but I was just thinking out loud that maybe the ER isn't such a bad idea. Which

bleeding disorder does he have??

Each child is different in the amount of IVIG given. My son gets 15

grams--plus fluid before and after.

Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve

transplant (2003), Mitral valve stenosis, COPD, asthma, Carnitine deficiency,

GERD,

suspected Velocardiofacial syndrome.

March 4, 2005

In a message dated 3/4/2005 4:27:00 AM Pacific Standard Time,

EUMANAFAMILY@... writes:

yes both my boys are going for the IVIG. the bleeding disorder brian has is

qualitative plattlete function defect. he has to wear a medical alert

braclet at all times

Tricia,

Do you use DDAVP, Factor VIII or something else for clotting?? I have

VonWillebrands, which is different but treated similarly. They use DDAVP on

me--if that doesn't work we go to Factor VIII. I hate lots of nosebleeds as a

teenager--and they were gushers, that lasted quite a while. I do remember it

being scary, so I can imagine how frightened you must have been. I don't recall

ever bleeding from my ear, though. Glad it stopped!!

My son had IVIG today, too. I'm hoping it went well for you.

Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve

transplant (2003), Mitral valve stenosis, COPD, asthma, Carnitine deficiency,

GERD,

suspected Velocardiofacial syndrome.

March 5, 2005

hello everyone!

we made it through our first infusion and i want to say thanks for all the

kind words and prayers.

the trip did not go as well as i had hoped. we left at 6 am, got there at 9

and they told us to wait for a room to become available. 5 1/2 hours later

they got us a room. then 2 more hours until the iv was started and the ivig

was ordered. we started shortly after 4:30 pm and was to finish at 10:30.

both boys got 37 grams each. with 7 minutes left on machine jason started

throwing up. it was really bad, probably the worst i have seen any of my

kids do at one time. they wouldnt be identical twins if the other didnt

throw up too. so 5 minutes later brian threw up as well. needless to say we

all ended up sleeping there and finally getting discharged at 11 15 am

today. my daughter was not happy about sleeping there and was crying. the

nurse took her for some jammies and ice cream. she came back with a huge

smile

brians ear was looked at, turns out he scratched the inside with the nail of

his finger which caused the nice long 30 hour bleed. they put him on ear

drops so that the tube did not get earitated from the blood and get

infected.

i am so glad to be home, after all the screaming fits, vommitting, sleepless

night and complaining its so good to be home. thanks for everyone gettting

us threw our first infusion!!!

many thanks, tricia

Re: help with IVIG information

>

> from Dale, Mom to Katy, CVID, age 20

>

> Tricia, best wishes for today -- I'll be praying for you and the boys.

> Our doctor wanted to do 3 infusions in the hospital infusion center

> before she let us do it with a nurse at home - that's again because

> those first ones can be rough. After that we had a nurse come to our

> home for years. It was wonderful!

>

> But this year Katy wanted to try a new method of infusion called Sub-Q

> and she is able to do it herself once a week without a nurse! She's

> loving the freedom. Several kids on the list are trying this new method

> and most have had success with it.

>

> Having a nurse come to the home really took a lot of stress out of the

> day -- having to pack, do without food, etc. We just rented special

> movies or saved special art projects for Katy to make the day special.

> She could stay in her pajamas all day and do as she pleased. She

> even baked cookies and made candy while getting the IV. She thought

> that was pretty cool!

>

> Gotta run, but know that everyone on this list is thinking of you and

> some of us are praying for you even as you are in the middle of your

> infusion. May God grant you strength and wisdom and peace for the day.

>

> In His service,

> Dale

>

> PATRICIA EUMANA wrote:

> do most of the kids here go to the

> > hospital for infusion or do they get a home nurse or do it them selves?

our

> > doctor was talking about getting a nurse to come to our house but only

if

> > insurance will cover it. thanks for all your help. will write again

tonight.

> >

>

> 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.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

/messages

>

March 5, 2005

In a message dated 3/5/2005 2:55:34 P.M. Eastern Standard Time,

EUMANAFAMILY@... writes:

i am so glad to be home, after all the screaming fits, vommitting, sleepless

night and complaining its so good to be home. thanks for everyone gettting

us threw our first infusion!!!

Sounds like you had a hard long day! Very sorry to hear all that happen! I

bet you are all exhausted. You attitude about it all is great. How are the

kids doing now that they are home? How are you?

Janet, Mom to Brittany, CVID, age 14

March 5, 2005

Tricia -

Were you at a hospital or an infusion center? If you're at a hospital,

I'd suggest finding out if there is an infusion center near you, or if

the hospital has an outpatient place to get infusions. We've NEVER

waited more then 5 minutes for a room, and more then 30 for the IV to

get started. I'd call the doc and let them know about the wait, it just

seems absurdly long to me.

Dayna

Re: help with IVIG information

hello everyone!

we made it through our first infusion and i want to say thanks for all

the

kind words and prayers.

the trip did not go as well as i had hoped. we left at 6 am, got there

at 9

and they told us to wait for a room to become available. 5 1/2 hours

later

they got us a room. then 2 more hours until the iv was started and the

ivig

was ordered. we started shortly after 4:30 pm and was to finish at

10:30.

both boys got 37 grams each. with 7 minutes left on machine jason

started

throwing up. it was really bad, probably the worst i have seen any of my

kids do at one time. they wouldnt be identical twins if the other didnt

throw up too. so 5 minutes later brian threw up as well. needless to say

we

all ended up sleeping there and finally getting discharged at 11 15 am

today. my daughter was not happy about sleeping there and was crying.

the

nurse took her for some jammies and ice cream. she came back with a huge

smile

brians ear was looked at, turns out he scratched the inside with the

nail of

his finger which caused the nice long 30 hour bleed. they put him on ear

drops so that the tube did not get earitated from the blood and get

infected.

i am so glad to be home, after all the screaming fits, vommitting,

sleepless

night and complaining its so good to be home. thanks for everyone

gettting

us threw our first infusion!!!

many thanks, tricia

Re: help with IVIG information

>

> from Dale, Mom to Katy, CVID, age 20

>

> Tricia, best wishes for today -- I'll be praying for you and the boys.

> Our doctor wanted to do 3 infusions in the hospital infusion center

> before she let us do it with a nurse at home - that's again because

> those first ones can be rough. After that we had a nurse come to our

> home for years. It was wonderful!

>

> But this year Katy wanted to try a new method of infusion called Sub-Q

> and she is able to do it herself once a week without a nurse! She's

> loving the freedom. Several kids on the list are trying this new

method

> and most have had success with it.

>

> Having a nurse come to the home really took a lot of stress out of the

> day -- having to pack, do without food, etc. We just rented special

> movies or saved special art projects for Katy to make the day special.

> She could stay in her pajamas all day and do as she pleased. She

> even baked cookies and made candy while getting the IV. She thought

> that was pretty cool!

>

> Gotta run, but know that everyone on this list is thinking of you and

> some of us are praying for you even as you are in the middle of your

> infusion. May God grant you strength and wisdom and peace for the

day.

>

> In His service,

> Dale

>

> PATRICIA EUMANA wrote:

> do most of the kids here go to the

> > hospital for infusion or do they get a home nurse or do it them

selves?

our

> > doctor was talking about getting a nurse to come to our house but

only

if

> > insurance will cover it. thanks for all your help. will write again

tonight.

> >

>

> 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.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

/messages

>

March 5, 2005

hi dayna,

our doc came into see us many times once we got a room. then he came back

today. he said that every so often the unit gets full and they dont have

room. this was at an actual hospital. the next infusion is planned for april

first at the hospital again but this time he said he wants to keep them for

10-12 hours for the infusion since the higher dose may have caused them to

get so ill. it may also have been an allergic reaction seeing as both boys

got the rash after they threw up. both were then given benedryl and a nusea

medication and treated for dehydration. but they are doing fine right now.

both of them are very pale. is that normal?? my guys get pale from time to

time but they are super pale today. they look sick. do you suggest we do a

home nurse come next time?? i am thinking that is best, but then if they get

sick again, its the hospital floor that gets dirty and not mine.

tricia

Re: help with IVIG information

>

> >

> > from Dale, Mom to Katy, CVID, age 20

> >

> > Tricia, best wishes for today -- I'll be praying for you and the boys.

> > Our doctor wanted to do 3 infusions in the hospital infusion center

> > before she let us do it with a nurse at home - that's again because

> > those first ones can be rough. After that we had a nurse come to our

> > home for years. It was wonderful!

> >

> > But this year Katy wanted to try a new method of infusion called Sub-Q

> > and she is able to do it herself once a week without a nurse! She's

> > loving the freedom. Several kids on the list are trying this new

> method

> > and most have had success with it.

> >

> > Having a nurse come to the home really took a lot of stress out of the

> > day -- having to pack, do without food, etc. We just rented special

> > movies or saved special art projects for Katy to make the day special.

> > She could stay in her pajamas all day and do as she pleased. She

> > even baked cookies and made candy while getting the IV. She thought

> > that was pretty cool!

> >

> > Gotta run, but know that everyone on this list is thinking of you and

> > some of us are praying for you even as you are in the middle of your

> > infusion. May God grant you strength and wisdom and peace for the

> day.

> >

> > In His service,

> > Dale

> >

> > PATRICIA EUMANA wrote:

> > do most of the kids here go to the

> > > hospital for infusion or do they get a home nurse or do it them

> selves?

> our

> > > doctor was talking about getting a nurse to come to our house but

> only

> if

> > > insurance will cover it. thanks for all your help. will write again

> tonight.

> > >

> >

> > 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.

> >

> > To unsubscribe -unsubscribegroups (DOT)

> > To search group archives go to:

> /messages

> >

March 5, 2005

In a message dated 3/5/2005 7:17:14 P.M. Eastern Standard Time,

rhmtce@... writes:

My son is 9 and diagnoses with lennox gastaut alos. He also has IgG

deficiency. He started IVIG 18 months ago and while his seizures have

not gone away totally they are over 90% reduced. it Started having an

impact on the seizures within the first month however it was over a year

before we felt that we were getting control. For us IVIG has been a

miracle in regards to seizures however it has also helped my son in many

other ways- he is simply feeling better- GI issues are improved, fewer

infections and a better attitude toward life in general. I hope you the

same sucess we have experienced.

Faye

This is interesting to me. Kody has had seizures in the past, and now with

his regression issues one of the things that keeps being brought up to me is

Lennox Gastaut. I was also told that the IVIG would help his seizures, and

he's had clear EEG's for over a year now. The thing is, they've always been

just

the quicky EEG in the office. We just did a 24 hour EEG at the U of M and

they said he had some abnormal sleep seizure activity, not a lot that

particular night but they are concerned. I'm wondering now if during the times

when he

may need a stronger dose of IVIG or maybe he's sick or the last week before

IVIG even if he has more sleep seizure activity and if that could be part of

his problems? I do think I'm going to mention this for sure to my ped and

also the the neuro at U of M when we see her.

Dee, Mom to Kody, age 9, Di syndrome, CVID, learning disabled, asthma,

general anxiety disorder, sensory integration disorder, animal lover and

protector, Yughio expert and chef extraordinaire. Also Mom to Arika, age 17,

senioritis. Kaila, age 13, allergies/asthma, queen of worry warts and

perfectionists. Sami, age 10, allergies/asthma, dyslexic, official family cheer

team

captain. Wife to , a loving wonderful dad and hyperactive workaholic.

Check out our website at: www.geocities.com/schmidtzoo/SNAK

March 5, 2005

from Dale, Mom to Katy, CVID, age 20

Tricia, I don't recommend home infusion until you have some totally

uneventful IV's at the hospital. My doctor said 3, but different

doctors will do different things - you certainly don't want them at home

until things settle down and that may take several months to figure out

the exact dosage, pre-medications, etc. I know it's a lot of trouble to

be at the hospital all day, but it's safer to start out with.

They may be looking pale because they have an immune system for the

first time and it's attacking germs! That could be a really good sign.

Some of our kids get really flushed and look feverish for a couple of

days -- but either way -- that usually passes once they reach a dose

where there is not a build-up of germs to have to destroy.

I'm sorry your day was so terrible. We hated going to the infusion

center where Katy started, but after 3 infusions, we were able to change

to home infusion care. That was GREAT!

Hope both boys continue to improve and you can get some much needed rest!

In His service,

dale

March 5, 2005

hi dale,

everything you mentioned makes total sense. i will do just that. but i did

want to mention that the twins both got a high dose of the IVIG to also help

with seizures as well. the infectious doctor said he researched the IVIG

with the epilepsy syndomes they have and he told me that after a few months

on IVIG that 50% of the kids showed improvement with most seizures completly

gone and as long as they stayed on it that all the seizures went away. we

were very excited. not to get our hopes up, but i feel this is our last

hopes and 50% is good enough for me to give it a try. i will let you know if

i see any changes. thanks tricia

Re: help with IVIG information

>

> from Dale, Mom to Katy, CVID, age 20

>

> Tricia, I don't recommend home infusion until you have some totally

> uneventful IV's at the hospital. My doctor said 3, but different

> doctors will do different things - you certainly don't want them at home

> until things settle down and that may take several months to figure out

> the exact dosage, pre-medications, etc. I know it's a lot of trouble to

> be at the hospital all day, but it's safer to start out with.

>

> They may be looking pale because they have an immune system for the

> first time and it's attacking germs! That could be a really good sign.

> Some of our kids get really flushed and look feverish for a couple of

> days -- but either way -- that usually passes once they reach a dose

> where there is not a build-up of germs to have to destroy.

>

> I'm sorry your day was so terrible. We hated going to the infusion

> center where Katy started, but after 3 infusions, we were able to change

> to home infusion care. That was GREAT!

>

> Hope both boys continue to improve and you can get some much needed rest!

>

> In His service,

> dale

>

> 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.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

/messages

>

March 5, 2005

Tricia -

We met a family from Arizona recently, their 13 year old daughter is on

IVIG for a severe seizure disorder, and they said since she started,

they all but disappeared. I wish I had their name and number for you,

but we actually met them at Disneyland of all places!

BTW - I'm with Dale on the whole not going home health until everything

is well under control!

Dayna

Re: help with IVIG information

hi dale,

everything you mentioned makes total sense. i will do just that. but i

did

want to mention that the twins both got a high dose of the IVIG to also

help

with seizures as well. the infectious doctor said he researched the IVIG

with the epilepsy syndomes they have and he told me that after a few

months

on IVIG that 50% of the kids showed improvement with most seizures

completly

gone and as long as they stayed on it that all the seizures went away.

we

were very excited. not to get our hopes up, but i feel this is our last

hopes and 50% is good enough for me to give it a try. i will let you

know if

i see any changes. thanks tricia

Re: help with IVIG information

>

> from Dale, Mom to Katy, CVID, age 20

>

> Tricia, I don't recommend home infusion until you have some totally

> uneventful IV's at the hospital. My doctor said 3, but different

> doctors will do different things - you certainly don't want them at

home

> until things settle down and that may take several months to figure

out

> the exact dosage, pre-medications, etc. I know it's a lot of trouble

to

> be at the hospital all day, but it's safer to start out with.

>

> They may be looking pale because they have an immune system for the

> first time and it's attacking germs! That could be a really good

sign.

> Some of our kids get really flushed and look feverish for a couple

of

> days -- but either way -- that usually passes once they reach a dose

> where there is not a build-up of germs to have to destroy.

>

> I'm sorry your day was so terrible. We hated going to the infusion

> center where Katy started, but after 3 infusions, we were able to

change

> to home infusion care. That was GREAT!

>

> Hope both boys continue to improve and you can get some much needed

rest!

>

> In His service,

> dale

>

> 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.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

/messages

>

March 5, 2005

> Hi Tricia