Re: Side Effects of IVIG 19 Days Later and ?'s About Metabolic Disorders and IVIG

January 30, 2008

Betsy I am so sorry to hear you and sweet Henry are having so much trouble as

you get started on the IVIg. First I would say that I am not real familiar with

the IVIg and the side effects that are specifically related to the Metabolic

Disorder but that said I am very familiar with IVIg and how kids may have

reaction from a rate that is too fast and initial dosing. The rate of your

infusion in our experience is the number one reason for complications. Many of

the side effects you are describing are specifically related to how fast you run

the infusion. My son had a top rate of only 35cc/her which meant we would take

all day to infuse. We always started out very very slowly and increased very

slowly. We only premedicated with Benadryl and Motrin and as time went on and

learned that he did not tolerate the Benadryl we only premedicated with the

Motrin and his usual dose of Zyrtec. We made sure he was well hydrated and

literally started his infusion at 5cc

and increased it at increment of 7cc until we reached the max of 35cc/hour. If

we did not follow this protocol exactly my son not only had problems during the

infusion but they persisted sometimes for weeks. The other thought I had is

where are you infusing and the experience of those that are infusing???. Also

is there any reason you cannot go to SubQ infusions?. My son was on IV for 7

years and then switch to SubQ about 11/2 years ago and it is going extremely

well. He does no pre-medicating and he has absolutely no side effects. He is 12

years old. I am surprised to hear your docs are thinking of other therapies. To

my knowlege there are no other therapies other than antibiotics which really

does not fully compare and has its on problems. I hope this will give you the

confidence to realize that it take time for his body to get use to the IVIg and

it is not uncommon that the first infusion has some side effects but that MOST

side effects are

related to rate and the experience of the infusion staff in keeping the rate

slow and steady. Feel free to ask further questions to arm yourself with more

confidense. After several months it works soooooo well for most kids.

BARBIE

Side Effects of IVIG 19 Days Later and ?'s About Metabolic

Disorders and IVIG

My son had his first IVIG infusion on Jan 11. It went well but 48

hrs later, the side effects started and are still going on! He has had

migraines daily, muscle pain, and severe facial swelling on and off. His

metabolic doc said this happens with metabolic kids and his body is basically

over reacting and an inflammatory response is causing all of this. The

Immunologist agrees and they agreed on putting him on prednisone for a week. He

is also taking a lot of Advil, Tylenol, Benadryl and caffeine to try to get

through 4th grade everyday. The school nurse is calling me everday. She is now

giving him coffee when he has a headache at school to decrease the inflammation.

UGHHHHH!!!! He is fussy and I am too!!!! We also have a call into his

neurologist as the metabolic doc is suggesting Topamax for the migraines but I

am afraid that he will never make it in school on it.

The metabolic doc is saying that if we cannot get all this better controlled

we will have to stop IVIG and come up with another idea for the CVID. I am

scared!!! The Immunologist is going to increase the steriod, benadryl and

tylenol premeds and postmeds for the next infusion and give him more fluids.

If anyone has similiar experiences or any practical advice, I would love to

hear it!

Thanks!

Betsy - mom to Henry - 10 yr old - CVID, Fatty Acid Oxidation Defect, Epilepsy,

Allergies, Asthma, and Sam - 4 yr old - low IGG, Asthma

January 30, 2008

I agree it could be rate related. 's max rate is 15cc/hr and

Meredith's is 12cc/hr. How fast did they run Henry? Also, with metabolic

disorders, they are much more sensitive to the diuretic effects of IVIG so

hydration is crucial. My kids just get fed continuously through their g

tubes starting the morning of their infusion and run that for 3 days after

to minimize side effects. Also, what brand are you using? Oftentimes, I

hear that switching brands can make a huge difference. Since my kids have

problems with sugar/carb metabolism, we had to go with Gamunex because it

was the only one at the time that was stabilized in protein (all the others

were with sugar). I think there is another one now, but am not sure which

one.

Mom to , 5 GSD, PIDD

Meredith, 3 GSD, PIDD

, 8 unaffected

Huntsville, AL (until the house sells :-))

www.caringbridge.com/visit/mhobbs

_____

From: [mailto: ] On Behalf Of

Barbara Jimenez

Sent: Wednesday, January 30, 2008 11:24 PM

Subject: Re: Side Effects of IVIG 19 Days Later and ?'s About

Metabolic Disorders and IVIG

Betsy I am so sorry to hear you and sweet Henry are having so much trouble

as you get started on the IVIg. First I would say that I am not real

familiar with the IVIg and the side effects that are specifically related to

the Metabolic Disorder but that said I am very familiar with IVIg and how

kids may have reaction from a rate that is too fast and initial dosing. The

rate of your infusion in our experience is the number one reason for

complications. Many of the side effects you are describing are specifically

related to how fast you run the infusion. My son had a top rate of only

35cc/her which meant we would take all day to infuse. We always started out

very very slowly and increased very slowly. We only premedicated with

Benadryl and Motrin and as time went on and learned that he did not tolerate

the Benadryl we only premedicated with the Motrin and his usual dose of

Zyrtec. We made sure he was well hydrated and literally started his infusion

at 5cc

and increased it at increment of 7cc until we reached the max of 35cc/hour.

If we did not follow this protocol exactly my son not only had problems

during the infusion but they persisted sometimes for weeks. The other

thought I had is where are you infusing and the experience of those that are

infusing???. Also is there any reason you cannot go to SubQ infusions?. My

son was on IV for 7 years and then switch to SubQ about 11/2 years ago and

it is going extremely well. He does no pre-medicating and he has absolutely

no side effects. He is 12 years old. I am surprised to hear your docs are

thinking of other therapies. To my knowlege there are no other therapies

other than antibiotics which really does not fully compare and has its on

problems. I hope this will give you the confidence to realize that it take

time for his body to get use to the IVIg and it is not uncommon that the

first infusion has some side effects but that MOST side effects are

related to rate and the experience of the infusion staff in keeping the rate

slow and steady. Feel free to ask further questions to arm yourself with

more confidense. After several months it works soooooo well for most kids.

BARBIE

Side Effects of IVIG 19 Days Later and ?'s About Metabolic

Disorders and IVIG

My son had his first IVIG infusion on Jan 11. It went well but 48 hrs later,

the side effects started and are still going on! He has had migraines daily,

muscle pain, and severe facial swelling on and off. His metabolic doc said

this happens with metabolic kids and his body is basically over reacting and

an inflammatory response is causing all of this. The Immunologist agrees and

they agreed on putting him on prednisone for a week. He is also taking a lot

of Advil, Tylenol, Benadryl and caffeine to try to get through 4th grade

everyday. The school nurse is calling me everday. She is now giving him

coffee when he has a headache at school to decrease the inflammation.

UGHHHHH!!!! He is fussy and I am too!!!! We also have a call into his

neurologist as the metabolic doc is suggesting Topamax for the migraines but

I am afraid that he will never make it in school on it.

The metabolic doc is saying that if we cannot get all this better controlled

we will have to stop IVIG and come up with another idea for the CVID. I am

scared!!! The Immunologist is going to increase the steriod, benadryl and

tylenol premeds and postmeds for the next infusion and give him more fluids.

If anyone has similiar experiences or any practical advice, I would love to

hear it!

Thanks!

Betsy - mom to Henry - 10 yr old - CVID, Fatty Acid Oxidation Defect,

Epilepsy, Allergies, Asthma, and Sam - 4 yr old - low IGG, Asthma

January 30, 2008

Sorry he is not feeling well. My son is has a metabolic and immune problem and

is one of those kids your neuro spoke of. We went through all the IV products

and eventually sub-q (he went 9 months on sub-q before he had a bad reaction) .

His reactions were pretty disabling and the effects often lasted longer than a

month. After the last reaction to sub-q his neuro also said that he should never

have IGG products again unless it was a critical life or death situation. It

was not always the first dose on the product that caused it..sometimes the

second or third and regardless of rate or and post meds. I wouldn't give up

yet. It might be just that product but if it continues despite rate

adjustments, product changes, IV dextrose before and after, etc, then you need

to listen to his metabolic doc (ours is at Cleveland Clinic and says he has a

quite a few kids that this has happened to). My son's twin did NOT have these

reactions to the product but has the same metabolic

and immune issues. We are back to isolation to prevent illness.

Best wishes,

Kris

Betsy Furler <bfurler@...> wrote:

My son had his first IVIG infusion on Jan 11. It went well but 48 hrs

later, the side effects started and are still going on! He has had migraines

daily, muscle pain, and severe facial swelling on and off. His metabolic doc

said this happens with metabolic kids and his body is basically over reacting

and an inflammatory response is causing all of this. The Immunologist agrees and

they agreed on putting him on prednisone for a week. He is also taking a lot of

Advil, Tylenol, Benadryl and caffeine to try to get through 4th grade everyday.

The school nurse is calling me everday. She is now giving him coffee when he has

a headache at school to decrease the inflammation. UGHHHHH!!!! He is fussy and I

am too!!!! We also have a call into his neurologist as the metabolic doc is

suggesting Topamax for the migraines but I am afraid that he will never make it

in school on it.

The metabolic doc is saying that if we cannot get all this better controlled we

will have to stop IVIG and come up with another idea for the CVID. I am

scared!!! The Immunologist is going to increase the steriod, benadryl and

tylenol premeds and postmeds for the next infusion and give him more fluids.

If anyone has similiar experiences or any practical advice, I would love to hear

it!

Thanks!

Betsy - mom to Henry - 10 yr old - CVID, Fatty Acid Oxidation Defect, Epilepsy,

Allergies, Asthma, and Sam - 4 yr old - low IGG, Asthma

January 30, 2008