IVIG

[Guest guest]

Hi Patty,

I don't blame you for being angry. But it does sound like the doctor's

office is in a bind, also. What I would do (and I have done this) is call

the doc on call. Explain the situation and what you need. You may have a

more understanding person on call, anyway it's worth a try.

Sandi--Mom to , age 8, suspected IgAdef., chronic sinusitis, ear

infections, severe allergies. Nine surgeries.

[Guest guest]

Hi Patty,

I don't blame you for being angry. But it does sound like the doctor's

office is in a bind, also. What I would do (and I have done this) is call

the doc on call. Explain the situation and what you need. You may have a

more understanding person on call, anyway it's worth a try.

Sandi--Mom to , age 8, suspected IgAdef., chronic sinusitis, ear

infections, severe allergies. Nine surgeries.

[Guest guest]

Cassie's max rate never goes above 30. She is getting Gamimmune and it

starts at 5 then goes to 10 then 15 then 30 until done. She is 7 years old

and weighs about 42 pounds. It goes very slowly, but that is about all she

can tolerate. We use to premedicate Tylenol/Benadryl but here lately, she

has been able to tolerate this rate really well. Good luck to your friend's

daughter. Hope all turns out well for them.

Belinda Rose,

Cassie's mom

[Guest guest]

Jan - Macey's rate can go as high as 100 cc/hr but for many months she was at 50

cc/hr. It is only in the last 3

infusions that she has been able to tolerate a faster rate. She is being

pretreated with hydrocortisone this time

around instead of Solumedrol so that may be the difference. She still gets the

IV Benadryl. (actually it's an IV

Push). The second try at infusion the next week went better. But Macey has

asked that we not do it at home. She wants

to go back to clinic. whether it be in Atlanta or Macon is up to the doctors.

Our immunologist in Atlanta is going to

talk with the hemoc in Macon (closer) and see if he will facilitate the infusion

at the clinic where we were before.

Ursula Holleman

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

Integration Disorder, Diabetes Insipidus, colonic

inertia)

http://maceyh.home.att.net

/

[Guest guest]

,

Well I am not an expert at this as my son has only been on IVIG since January,

but it seems to me that the level he is getting on his IgG is likely due to the

fact that he gets IVIG. Maybe I am crazy, but it seems like the correlation

between no infections and being on IVIG is from the IVIG and not from some

recovery on the part of his immune system. Does you doc want to go off

permanently or just for the summer???? We might be trialing off for the summer

only and then starting again in October, but I'm not sure yet.

Grace 8/97 (IgA def; Specific T-cell deficiency; pneumococcal antibody def;

asthma; allergies)

Caelan 8/99 (Iga def; specific t-cell def; pneumococcal antibody def; asthma;

severe food allergy; Latex allergy; Bactrim, Biaxin, and Pencillin allergy;

Eosinophilic espophagitis, on IVIG)

IVIG

Perhaps someone can help me with a decision we have to make. Our son is

eight years old with PID, diagnosed in April 2000, and has been receiving IVIG

for almost a year now with his IVIG changing to every three weeks last month due

to fatigue prior to treatment. Before initiating therapy, he had numerous ear

infections, sinus infections and 3 pneumonia's. Since therapy started, he has

not had ANY infections. His total IGG last month was around 740 with normal

values being between 633-1280. Prior to initiating IVIG his IGG level was 450

and his IGM was 52 with normal levels being between 48-207. His doc would like

to stop IVIG due his levels being normal and lack of infections but we are

afraid to stop because of how tired he was and the number of infections he had

prior to therapy. I don't know if it matters or not but he had pre and post

pneumovax titers in July, prior to initiating IVIG, and was considered a

nonresponder because his post titers did not respond two-fold. Any insight

would be GREATLY appreciated.

Also, does anyone know if there is a correlation between PID patients and

Gastro problems? My son has real problems with constipation. He uses Miralax

and Metimucil daily.

,

[Guest guest]

Cassie had her last infusion yesterday and had a very unusual reaction and

was wondering if anyone had experienced the same thing? At the end of the

infusion, the nurse did her vitals and left. No problem so far. Well, about

a minute later Cassie says her head is hurting and she is dizzy. Then she

could not even stand up because her legs were hurting her real badly. She

cried (actually yelled) and I gave her a warm bath and massage. Gave her

Tylenol and she went to bed whimpering that she was still in lots of pain.

This morning woke up with a headache and mild fever. Gave her more meds and

she went to school. She has never had a reaction like this before. The only

reactions she has ever had was fever/mild headache. She is not complaining

about her legs but she is still saying her head is hurting. It was just

weird. Spoke with immunologist and we are trialing off IVIG for the summer

to retest the immune system. Wish us luck....

Belinda Rose,

Mom to Allyssa (10) and Cassie (7), igg immunodeficient, asthma, sinusitis,

IVIG for 5 years

[Guest guest]

Cassie had her last infusion yesterday and had a very unusual reaction and

was wondering if anyone had experienced the same thing? At the end of the

infusion, the nurse did her vitals and left. No problem so far. Well, about

a minute later Cassie says her head is hurting and she is dizzy. Then she

could not even stand up because her legs were hurting her real badly. She

cried (actually yelled) and I gave her a warm bath and massage. Gave her

Tylenol and she went to bed whimpering that she was still in lots of pain.

This morning woke up with a headache and mild fever. Gave her more meds and

she went to school. She has never had a reaction like this before. The only

reactions she has ever had was fever/mild headache. She is not complaining

about her legs but she is still saying her head is hurting. It was just

weird. Spoke with immunologist and we are trialing off IVIG for the summer

to retest the immune system. Wish us luck....

Belinda Rose,

Mom to Allyssa (10) and Cassie (7), igg immunodeficient, asthma, sinusitis,

IVIG for 5 years

[Guest guest]

Hi Belinda,

Chelsea just had the same experience last week, we gave her IVIG while she

was in the hospital and the IVIG was generic and well Chelsea was in

miserable joint paint 3 hours after the infusion started. It was horrible.

The pharmacist said the joint pain is a normal side effect of the IVIG. This

was a first for us. I hope Cassie feels better real soon and please tell

Cassie and Allyssa that Britt and Chelsea say Hello!

Marlo

[Guest guest]

Hi Belinda,

Chelsea just had the same experience last week, we gave her IVIG while she

was in the hospital and the IVIG was generic and well Chelsea was in

miserable joint paint 3 hours after the infusion started. It was horrible.

The pharmacist said the joint pain is a normal side effect of the IVIG. This

was a first for us. I hope Cassie feels better real soon and please tell

Cassie and Allyssa that Britt and Chelsea say Hello!

Marlo

[Guest guest]

Another quick survey " ish " question:

Does anyone know of anyone who has " outgrown " their deficiency at the

pre-adolescent (sp??) stage? I know they say this is one of those times that

a child should have outgrown the deficiency and sometimes at puberty. And is

puberty their last hope of outgrowing their deficiency? I was just wondering

if anyone knows someone who actually has done that? Doc is taking her off

IVIG to retest immune function and said this is going to be the last time for

" many " years.

Belinda Rose

[Guest guest]

Another quick survey " ish " question:

Does anyone know of anyone who has " outgrown " their deficiency at the

pre-adolescent (sp??) stage? I know they say this is one of those times that

a child should have outgrown the deficiency and sometimes at puberty. And is

puberty their last hope of outgrowing their deficiency? I was just wondering

if anyone knows someone who actually has done that? Doc is taking her off

IVIG to retest immune function and said this is going to be the last time for

" many " years.

Belinda Rose

[Guest guest]

Belinda,

Sorry to hear that Cassie had such a rough time with the IVIG! It

sounds like she might have been a bit dehydrated... or at least

relatively so, given the circumstance. IVIG is a large " solute load, "

which just means there's a lot of protein and (depending on the brand)

sugar and such, added to the bloodstream in a very short period of time.

If you're even a little bit dehydrated, this massive addition can

result in the body pulling fluids from surrounding tissues into the

bloodstream, in order to try to balance and dilute out the IVIG and its

byproducts. Dramatic shifts in fluid, electrolyte, and general

molecular balance can result in nasty side effects.

When you're a bit dehydrated and electrolytes get a bit out of whack,

you can get horrible leg cramps. Many of us have woken up in the middle

of the night with " charley horses " -- the really painful

tightening/knotting of the calf muscle, which can last minutes upon

minutes (but it feels like it lasts longer!). That is far more likely

to happen when the potassium is out of range, even slightly so (it

happens when other electrolytes are wacky, but potassium is the biggest

contributor). And those can cause the calf muscles to be sore while

walking or stretching for days. You can get a similar reaction in the

muscles, without the full-blown charley horse, and that could also

account for painful legs hours later.

The headache and fever response are also not uncommon reactions to the

IVIG, and I know personally I've found that my IVIG reactions are far

worse when I am not really pumped full of fluids beforehand. The

headache and fever can come on during the IVIG, right after it, or up to

two to three days afterward, and it can last up to a few days.

Most of these problems can be prevented by making sure she's extremely

well-hydrated going into IVIG day, and then by keeping up good food,

fluid, and nutrition balance in the days following. Some people even

will run some extra fluids either before or after the IVIG infusion,

particularly if they're feeling " dry " or have been sick or something

recently. At the very least, pushing oral fluids is a key to

prevention, and (perhaps at this stage) it may help to alleviate some of

the symptoms now - while hopefully preventing more muscle spasms or

headaches from returning.

I'm glad you talked to her immuno, because that would have been the

first thing I'd mention... just to make sure there's nothing new that

might account for this, since it's so different from her other reactions

in the past. But I really think the common underlying factor was that

she might have been just a bit dehydrated, and her body may have

responded more dramatically as a result, when the IVIG was added to the

pile.

Oops - nearly forgot to mention that when I'm hurting from an IVIG

reaction or a post-charley-horse/muscle cramp muscle pain, ibuprofen

(Advil or Motrin) helps me better than Tylenol. I don't know if you use

that with her, and what you and her immuno discussed, but I thought I'd

mention that.... this kind of pain is usually inflammatory in nature,

and muscle aches/pains usually respond better to an anti-inflammatory med.

I hope this info helps, and that Cassie starts feeling better soon!

Take care,

[Guest guest]

Belinda,

Sorry to hear that Cassie had such a rough time with the IVIG! It

sounds like she might have been a bit dehydrated... or at least

relatively so, given the circumstance. IVIG is a large " solute load, "

which just means there's a lot of protein and (depending on the brand)

sugar and such, added to the bloodstream in a very short period of time.

If you're even a little bit dehydrated, this massive addition can

result in the body pulling fluids from surrounding tissues into the

bloodstream, in order to try to balance and dilute out the IVIG and its

byproducts. Dramatic shifts in fluid, electrolyte, and general

molecular balance can result in nasty side effects.

When you're a bit dehydrated and electrolytes get a bit out of whack,

you can get horrible leg cramps. Many of us have woken up in the middle

of the night with " charley horses " -- the really painful

tightening/knotting of the calf muscle, which can last minutes upon

minutes (but it feels like it lasts longer!). That is far more likely

to happen when the potassium is out of range, even slightly so (it

happens when other electrolytes are wacky, but potassium is the biggest

contributor). And those can cause the calf muscles to be sore while

walking or stretching for days. You can get a similar reaction in the

muscles, without the full-blown charley horse, and that could also

account for painful legs hours later.

The headache and fever response are also not uncommon reactions to the

IVIG, and I know personally I've found that my IVIG reactions are far

worse when I am not really pumped full of fluids beforehand. The

headache and fever can come on during the IVIG, right after it, or up to

two to three days afterward, and it can last up to a few days.

Most of these problems can be prevented by making sure she's extremely

well-hydrated going into IVIG day, and then by keeping up good food,

fluid, and nutrition balance in the days following. Some people even

will run some extra fluids either before or after the IVIG infusion,

particularly if they're feeling " dry " or have been sick or something

recently. At the very least, pushing oral fluids is a key to

prevention, and (perhaps at this stage) it may help to alleviate some of

the symptoms now - while hopefully preventing more muscle spasms or

headaches from returning.

I'm glad you talked to her immuno, because that would have been the

first thing I'd mention... just to make sure there's nothing new that

might account for this, since it's so different from her other reactions

in the past. But I really think the common underlying factor was that

she might have been just a bit dehydrated, and her body may have

responded more dramatically as a result, when the IVIG was added to the

pile.

Oops - nearly forgot to mention that when I'm hurting from an IVIG

reaction or a post-charley-horse/muscle cramp muscle pain, ibuprofen

(Advil or Motrin) helps me better than Tylenol. I don't know if you use

that with her, and what you and her immuno discussed, but I thought I'd

mention that.... this kind of pain is usually inflammatory in nature,

and muscle aches/pains usually respond better to an anti-inflammatory med.

I hope this info helps, and that Cassie starts feeling better soon!

Take care,

[Guest guest]

Kathy:

Yes, I would have that same fear. From what I understand the IVIG is from

many different people as well, so that just increases all those blood

product risks. Our decisions for our children are not easy! Good Luck.

>From: " " <kblanco@...>

>Subject: Re: [ ] measles virus now seen in the spinal fluid.

>Date: Thu, 25 Apr 2002 10:20:12 -0700

>

>Yes, I think the herpes virus has everything to do with it. HERPES

>can cross the blood brain barrier, and at the same time we are injecting

>mercury and aluminum, which also crosses the blood brain barrier.

>The blood brain barrier holds off spinal fluid normally by mechanisms

>that detect toxins or viruses, but I think becuase it is herpes, it

>has a do not pass go monopoly on the brain.

>

>I personally have been told that IVIG is a good course of action for my

>kids....if I can just get past the idea it is a blood product however. I

>feel

>that caution inside of me to refuse it based upon that, since we also

>have a zoonotic virus in is in the form of STEALTH. (polio vaccines)

>

>It is a hard weight and measure, should I go for it or not?

>

>Kathy

> [ ] measles virus now seen in the spinal fluid.

> > >Date: Wed, 24 Apr 2002 15:16:02 -0700

> > >

> > >All~

> > >You should note a conference today, Dr Andy Wakefield explored the

>issue

>in

> > >a study of the measles virus seen in the spinal fluid of autistic

>children!

> > > Please note, this is part of the central nervous system, so makes

>perfect

> > >sense...and probably is now gone into stealthy status. As you may or

>may

> > >not know, I think that may be connected to mercury, as he also sees

>mercury

> > >in the fluid, so it is a convalant bond of viruses and toxins making

>autism

> > >in our children!

> > >

> > >How many places must we have the measles virus in, to prove our point

>that

> > >our kids are vaccinosis injured and have reacted badly and now harbor

>the

> > >virus in their bodies? So far they see it in the brain, the gut, and

>now

> > >the spinal fluid! ARGH.... My heck....now I have to get a spinal tap,

>and

> > >then when I do that, I will surely sue someones *@@ off.

> > >

> > >Makes you wonder what the " other viruses " are doing as well.....this

>all

> > >makes perfect sense if you think of it. MS patients have been saying

>for

> > >years that demylination occurs with a virus and a toxin, which is seen

>in

> > >their spinal fluid and makes their blood brain barrier more porous.

>The

> > >only way that can happen is that you have a herpes driven virus (which

> > >opens the blood brain barrier) with a toxin, look it up, it makes

>sense.

> > >

> > >Our time of reckoning is soon at hand. I hope Andy has excellent

> > >protection for himself and his family, as this will be dissminated to

>the

> > >powers that be. I will pray very hard that no evil will come to him.

> > >

> > >Kathy

_________________________________________________________________

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[Guest guest]

<PRE>What is IVIG?

[Guest guest]

IVIG stands for intravenous immunoglobin. It is a very EXPENSIVE

treatment, whereby the immunoglobins from thousands of blood donors

are pooled and then given to the patient via an IV. The

immunoglobins " flood " the patient's body with normal antibodies, and

reduce symptoms.

I use IVIG myself, and have done so for 2 years, to help control the

symptoms of myasthenia gravis. I do an infusion of IVIG every 2

weeks. It is helpful for me. It does not help my body improve its

own immune system, however. For me, it's just a symptomatic

treatment.

With kids with autism, though, I believe some permanent improvements

can supposedly be achieved by helping the body correct defects in the

immune system, kill viral loads in the gut, etc. I've even heard of

some doctors using the IV solution orally, with good results,

although I've not yet read any details.

Hope this helps.

Cally

> <PRE>What is IVIG?

[Guest guest]

Hi Pam, Dr. Ochs from the University of Washington shared a little different way

of dosing. He used 500mg/kg as an appropriate dose and that the trough should be

350-500 over the baseline. It is nice to see it in writing in another format. We

started Lucas at 4 years old he weighed I believe 35lbs and he was started at

10grams we went up last year because he was having breakthrough infections. So

he is now at 15gms. It seems to be holding him although he has had two colds

since he started 1st grade but they have overall been very mild compared to what

I have seen in the past. Just our situation if it helps. I think I have also

shared before that we have to go up very slowly for Lucas or he has post

infusion symptoms. We only use Motrin and benadryl to premedicate. We start at

7cc and increase 4cc every 5 minutes until we reach his max of 65cc/hour if we

go faster or high he gets a headache becomes very pale drops his B/P and

sometimes go a fever as well as he has post infusion headaches and body/joint

pain. This has really worked for us. Our doc does this for all of his patients.

We just happen to be the only child for now. He told us the other day that Lucas

is the only child that does not appear to be outgrowing his immune difficulties.

Why do we always have to be the first at everything? Hope this helps BARBIE

[Guest guest]

Yes, it does help. In my heart, I knew the 1 g/kilo (1000 mg/kg) was too

high for a little girl.

Pam

Re: IVIg

Hi Pam, Dr. Ochs from the University of Washington shared a little different

way of dosing. He used 500mg/kg as an appropriate dose and that the trough

should be 350-500 over the baseline. It is nice to see it in writing in

another format. We started Lucas at 4 years old he weighed I believe 35lbs

and he was started at 10grams we went up last year because he was having

breakthrough infections. So he is now at 15gms. It seems to be holding him

although he has had two colds since he started 1st grade but they have

overall been very mild compared to what I have seen in the past. Just our

situation if it helps. I think I have also shared before that we have to go

up very slowly for Lucas or he has post infusion symptoms. We only use

Motrin and benadryl to premedicate. We start at 7cc and increase 4cc every

5 minutes until we reach his max of 65cc/hour if we go faster or high he

gets a headache becomes very pale drops his B/P and sometimes go a fever as

well as he has post infusion headaches and body/joint pain. This has really

worked for us. Our doc does this for all of his patients. We just happen to

be the only child for now. He told us the other day that Lucas is the only

child that does not appear to be outgrowing his immune difficulties. Why do

we always have to be the first at everything? Hope this helps BARBIE

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 Randi,

as far as I understand,some immune reaction is possible. Dr.

Fudenberg writtes that sometimes the reaction can be even severe.

http://www.nitrf.org/Fadtreatmentswarning.htm :

" In the case of previous years' fads in approaches to therapy of

autism, e.g., Intravenous Immunoglobulin (IVIG), ONLY ABOUT 15% WERE

HELPED. These turned out to be the same types in whom we found

AUTOANTIBODIES TO MYELIN BASIC PROTEIN and other Central Nervous

System tissue constituents. THE OTHERS WERE NOT HELPED. Indeed, some

developed increasingly severe anaphylactic reactions due to infusion

of foreign isotypes of IgG and IgA (the Ig is isolated from pools of

600 to 10,000 donors, so it contains foreign IgG-Gm and IgA-Am

isotypes, which can induce antibody formation much like Rh+ red cells

repeatedly infused into Rh- individuals).

Two known deaths due to anaphylaxis have occurred using IVIG.

Immunostaining methods detected immune complexes containing host

antibodies and " donor " allotypes in the perivascular spaces in the

bronchioles, and histologic examination showed the typical changes of

anaphylaxis. The physician administering the IVIG thought he had a

50% improval rate; the parents of the 15% who improved responded with

letters of thanks, and about 15% of parents of nonresponders wrote: a

small percentage of the 85% nonresponders. " (end of quote)

Margaret

> This past week we gave our 3 1/2 year old son his first IV of

> Immune Globulin (Gamimune N 10%.) Since this infusion his cheeks

are

> constantly red and warm. In the past whenever he got red cheeks it

> indicated an allergic reaction to some new type of food. However,

we

> have not introduced anything new recently. Is this a normal side

> effect or is it something we should be concerned about?

>

> Any help or information would be greatly appreciated.

>

> Thanks,

>

> Randi

[Guest guest]

I've been looking into the IgG stuff a lot today-- well, that is when my

computer lets me...anyway-- from what I've read, even if 's total IgG

numbers weren't abnormal he still has quite an IgG subclass I deficiency-- and

he is also deficient in IgM.......

I've learned a lot today. I had never really looked into this part of their

problems that much--always focused on SDS..

Pax,

Pattie

[Guest guest]

ps,-- Kim, thanks for the info.....

Pattie

[Guest guest]

Hi Lori,

We chickened out of the IVIG. We are still considering the oral

immunoglobin. I remember talking to Dr. Bradstreet about it (not

sure if that is who you are seeing). At the time he felt there was

a subset of kids that could greatly benefit from it and he used some

test results to judge who he thought would be a good responder. I

have heard mixed results from parents. We posted to a couple of

lists when we were considering it and got a few negative posts and

some positive ones. It seems to be the usual, some kids do well and

others don't.

I will be thinking of you on Wednesday and hoping for the best. Let

us know how it goes.

Theresa, SA

> Hi. Has anybody had any experiance with IVIG?

> My sons doctor wants him to have an IVIG infusion. The appointment

is

> Wednesday afternoon.

> Any & all suggestions would be appreciated.

> Thanks in advance,

> Lori

[Guest guest]

Theresa,

I may still chicken out. The closer it gets, the more scared I get.

Thanks for your input. I really appreciate it.

Lori

In a message dated 11/9/2003 9:21:18 PM Eastern Standard Time,

autismzone@... writes:

> Hi Lori,

>

> We chickened out of the IVIG. We are still considering the oral

> immunoglobin. I remember talking to Dr. Bradstreet about it (not

> sure if that is who you are seeing). At the time he felt there was

> a subset of kids that could greatly benefit from it and he used some

> test results to judge who he thought would be a good responder. I

> have heard mixed results from parents. We posted to a couple of

> lists when we were considering it and got a few negative posts and

> some positive ones. It seems to be the usual, some kids do well and

> others don't.

>

> I will be thinking of you on Wednesday and hoping for the

> best. Let

> us know how it goes.

>

> Theresa, SA

[Guest guest]

Theresa,

I may still chicken out. The closer it gets, the more scared I get.

Thanks for your input. I really appreciate it.

Lori

In a message dated 11/9/2003 9:21:18 PM Eastern Standard Time,

autismzone@... writes:

> Hi Lori,

>

> We chickened out of the IVIG. We are still considering the oral

> immunoglobin. I remember talking to Dr. Bradstreet about it (not

> sure if that is who you are seeing). At the time he felt there was

> a subset of kids that could greatly benefit from it and he used some

> test results to judge who he thought would be a good responder. I

> have heard mixed results from parents. We posted to a couple of

> lists when we were considering it and got a few negative posts and

> some positive ones. It seems to be the usual, some kids do well and

> others don't.

>

> I will be thinking of you on Wednesday and hoping for the

> best. Let

> us know how it goes.

>

> Theresa, SA

[Guest guest]

I've heard great things about it, but I have a question did a test for MBP

determine your use?

>From: " lastringer2002 " <stringerup@...>

>Reply-

>

>Subject: IVIG

>Date: Sun, 09 Nov 2003 22:59:53 -0000

>

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