IVIG dosing

[mom md]

I know there are multiple ways to do IVIG but we are getting ready to do it here. My doctor is waiting to get dosing and protocol info from Latimer. Does anyone have anything to add...

[Buster]

I know there are multiple ways to do IVIG but we are getting ready to do it here. My doctor is waiting to get dosing and protocol info from Latimer. Does anyone have anything to add...

Hi Mom_MD,

 

Not quite sure what you are asking here, but happy to answer any question regarding our experience....

 

In our case, we split the IVIG over 2 days. It took about 6 hours per day for each infusion.

 

The protocol we followed was for 1 gm/kg/day (I think Dr. K and others use .75 gm/kg/day):

1. provide age/wt appropriate tylenol and benadryl 1 hour before going to hospital (make sure to tell them what you did or they'll repeat)
   
2. ask for EMLA cream to be applied when you arrive (helps lessen pain of IV insertion if child is sensitive)
   
3. go to room and get settled and order something for lunch -- you're going to be there a while
   
4. wait 30 min and then get IV -- in our case they did this in another room
   
5. our doctor used Gamunex 10% (due to low sucrose level and good success by others)
   
6. infusion rates differ by weight and total dosage so the pharmacy will likely tell you the rate.
   
7. in our case, it was:
   1. 
      
   2. infuse at a low initial rate (like 12 cc/hr for 30 min) -- watch like a hawk for any reactions throughout. Most adverse reactions are within 30 min of change
      
   3. increase infusion rate to 25 cc/hr for 30 min -- again watching for changes
      
   4. increase infusion rate to 54 cc/hr for xx min -- infusion rate is calculated by total amount given
      
   5. use dextrose 5% flush at end -- saline is incompatible with Gamunex 10%
      

[*] make sure to eat lunch and drink fluids. IVIG can be dehydrating.

[*] it is likely your child might get a headache. Consider a second dosage of tylenol at the 4 hour mark.

[*] remove IV

[*] if you can, get your child a snack because it is really likely your child will fall fast asleep after the anxiety of being at the hospital

[*] get as much sleep as possible and repeat the next day.

Please post or IM if questions. Remember it takes a while so cards, good book, or TV whatever to pass the time would be good.

 

Best wishes,

 

Buster

[Suzan]

Oh great! You are ready to go. Good luck to you and let me know how it goes. I can't believe you have this lined up so fast! How long until you start?

 

Susan

[mom md]

The hospital is ready they are just waiting for the order to be faxed from Latimer...may be easier said than done. If I can just get my immunologist on the phone with Latimer she said she would write it. My third option is still my friend who is a pediatrician and she said she would write it if we could get direction from Latimer. Multiple options jsut waiting for the trigger to be pulled...thanks Buster for the info! Very helpful.

Oh great! You are ready to go. Good luck to you and let me know how it goes. I can't believe you have this lined up so fast! How long until you start?

 

Susan

[Buster]

The hospital is ready they are just waiting for the order to be faxed from Latimer...may be easier said than done. If I can just get my immunologist on the phone with Latimer she said she would write it. My third option is still my friend who is a pediatrician and she said she would write it if we could get direction from Latimer. Multiple options jsut waiting for the trigger to be pulled...thanks Buster for the info! Very helpful.

Oh great! You are ready to go. Good luck to you and let me know how it goes. I can't believe you have this lined up so fast! How long until you start?

 

Susan

One mild caution is that we had to remind our nurse to use Dextrose 5% for the flush since they don't usually use Gamunex 10%. Gamunex is incompatible with Saline flush.

 

Buster

[mama2alex]

The hospital is ready they are just waiting for the order to be faxed from Latimer...may be easier said than done. If I can just get my immunologist on the phone with Latimer she said she would write it. My third option is still my friend who is a pediatrician and she said she would write it if we could get direction from Latimer. Multiple options jsut waiting for the trigger to be pulled...thanks Buster for the info! Very helpful.

Oh great! You are ready to go. Good luck to you and let me know how it goes. I can't believe you have this lined up so fast! How long until you start?

 

Susan

One mild caution is that we had to remind our nurse to use Dextrose 5% for the flush since they don't usually use Gamunex 10%. Gamunex is incompatible with Saline flush.

 

Buster

 

Thanks for posting this question! We too are getting ready for IVIG - either next week (if insurance approves) or the week after.

 

Thanks for all the information Buster! Any thoughts on Gamunex 10% vs. Gammaguard? We were told he'd be given Gamunex 10% "if it was available," otherwise it would be Gammaguard.

[coco]

Dr. K uses 1.75 grams per kilo over 2 days...we did it with him in August. My daughter's monthly dosage is 1.00 grams per kilo. I wish you all the best and keep posting!!!!

 

coco

[EAMom]

Dr. K uses 1.75 grams per kilo over 2 days...we did it with him in August. My daughter's monthly dosage is 1.00 grams per kilo. I wish you all the best and keep posting!!!!

 

coco

 

Dr. K.'s website says his dose is 1.5gr/kg over 2 days (0.75gr/kg/day). http://webpediatrics.com/ivig.html

Intrestingly, it says for repeat IVIG's he does 1.5gr/kg all in 1 day.

 

Recommended initial treatment with IVIG consists of administration of IVIG in the amount of 750 mg/kg/day for two consecutive days. Patients are admitted to an outpatient setting usually early in the morning and discharged upon completion of the treatment (expected duration of treatment is between 3 and 5 hours). If necessary, additional one-day treatments (1.5 grams/kg/day) can be administered in 28 days intervals thereafter.

 

Maybe he increases the dose in certain situations?

 

Swedo's dose was higher.... 2.0gr/kg over 2 days (1.0gr/kg/day).

[coco]

Good point EAMom...I can only speak to what he used for my dd. Perhaps he varies it in certain cases. I wonder how these doctors determine what is the optimum/safest way to determine dosage amounts...anywhere from 2.0 - 1.0 - 500 mgs...no "standardized" protocol. Maybe someday.

[nevergiveup]

Are you treating PANDAS with a one time high dose or are you treating also an immune def. with monthly IVIG for a six month trial?

If you get to choose, I would do the Dr. K dose, 1.5 grams per kg over 2 days. And then monthly infusions like Dr. B prescribes

Up to 1 gram per kg. My daughter currently gets 550 mg per kg. Every 4 weeks. I know her ANA is already drastically down to 1:80. which is a large change from 1:2560. She doesn't handle IVIG like most of the kids on this forum. She had a one time dose of 1gram per kg. and she was sick with a migraine, fatigue, dizziness for over 3 weeks. Missed a lot of school. Premedicated with tylenol, benedryl and steroids. So her doses are low right now. We will be drawing her autoimmune and immune blood markers this week to see how the monthly IVIG's are going.

 

 

 

mom md' date='Dec 2 2009, 07:45 PM' post='46868']

I know there are multiple ways to do IVIG but we are getting ready to do it here. My doctor is waiting to get dosing and protocol info from Latimer. Doe..

[Buster]

Here's a table and perhaps it will answer your question. Sometimes there are more headaches with Gammagard but it is less expensive.

 

http://www.ashp.org/s_ashp/docs/files/DSho...pdatedDec07.pdf

 

The hospital is ready they are just waiting for the order to be faxed from Latimer...may be easier said than done. If I can just get my immunologist on the phone with Latimer she said she would write it. My third option is still my friend who is a pediatrician and she said she would write it if we could get direction from Latimer. Multiple options jsut waiting for the trigger to be pulled...thanks Buster for the info! Very helpful.

Oh great! You are ready to go. Good luck to you and let me know how it goes. I can't believe you have this lined up so fast! How long until you start?

 

Susan

One mild caution is that we had to remind our nurse to use Dextrose 5% for the flush since they don't usually use Gamunex 10%. Gamunex is incompatible with Saline flush.

 

Buster

 

Thanks for posting this question! We too are getting ready for IVIG - either next week (if insurance approves) or the week after.

 

Thanks for all the information Buster! Any thoughts on Gamunex 10% vs. Gammaguard? We were told he'd be given Gamunex 10% "if it was available," otherwise it would be Gammaguard.

[Worried_Dad]

Wow - that's very interesting about the "repeat IVIG" protocol. When we did rounds 2 and 3 with Dr. K this summer, it was exactly the same as round 1: 1.5 g/kg over 2 days both times.

 

Maybe it just depends on the patient, the age, the severity? A case-by-case judgment call for Dr. K, maybe?

 

 

Dr. K.'s website says his dose is 1.5gr/kg over 2 days (0.75gr/kg/day). http://webpediatrics.com/ivig.html

Intrestingly, it says for repeat IVIG's he does 1.5gr/kg all in 1 day.

 

Recommended initial treatment with IVIG consists of administration of IVIG in the amount of 750 mg/kg/day for two consecutive days. Patients are admitted to an outpatient setting usually early in the morning and discharged upon completion of the treatment (expected duration of treatment is between 3 and 5 hours). If necessary, additional one-day treatments (1.5 grams/kg/day) can be administered in 28 days intervals thereafter.

 

Maybe he increases the dose in certain situations?

 

Swedo's dose was higher.... 2.0gr/kg over 2 days (1.0gr/kg/day).

[nevergiveup]

Worried Dad,

 

Follow up IVIG was done by immunologist for CVID. However Dr. B (another immune doc) gives much higher doses for autoimmune issues associated with CVID. Not a standard protocol. First IVIG was done by Dr. L, seemed low compared to what she is prescribing now. I am not too concerned though because my dd cannot handle too high a dose. She reacts bad to the IVIG. Her one eye even gets lazy for a week after each infusion. ODDD??? How's your son doing? I know he is on high dose augmentin, but I have also been told IVIG keeps altering the immune system and you can see changes up to 2 years. (A neurosurgeon told me that IVIG has many things unknown about how it works, but that IVIG can alter the immune system in different ways over time, they even have seen changes up to two years post? )

[Worried_Dad]

Our son continues to make progress. Guess we'll never know for sure how much of a difference those 2 additional rounds of IVIG with Dr. K last summer made. All we know is, post-IVIG progress was minimal... until we started the mega-dose augmentin, and then everything accelerated.

 

I'm holding my breath and praying a lot right now, as we enter the cold and flu season and our other 2 boys bring home various bugs. A year ago at this time, we were 2 months post-IVIG round 1 with Dr. K, our son was 70% improved, and we thought the nightmare was over. Then infections started hitting, and everything went downhill. I'm scared to death sometimes that history will repeat itself!

 

Thanks for the info about IVIG continuing to work long after the original infusion. That's hopeful!

 

Worried Dad,

 

Follow up IVIG was done by immunologist for CVID. However Dr. B (another immune doc) gives much higher doses for autoimmune issues associated with CVID. Not a standard protocol. First IVIG was done by Dr. L, seemed low compared to what she is prescribing now. I am not too concerned though because my dd cannot handle too high a dose. She reacts bad to the IVIG. Her one eye even gets lazy for a week after each infusion. ODDD??? How's your son doing? I know he is on high dose augmentin, but I have also been told IVIG keeps altering the immune system and you can see changes up to 2 years. (A neurosurgeon told me that IVIG has many things unknown about how it works, but that IVIG can alter the immune system in different ways over time, they even have seen changes up to two years post? )

[sf_mom]

I'm so glad your son is showing improvement. FANTASTIC NEWS!!!

 

Have you considered putting your other boys on prophalaxis antibiotic for the winter months? I know keeping our 2 1/2 year old twins healthy is key to the health of our family..... We have them on homeopathic anti-virals http://syntrion.eu/usa/products/syimmune-tablets and because the 2 1/2 year boy is suspected of PANDAs he is antibiotics until further testing is completed. We also have rapid strep tests at home bought on line to swab when needed.

 

-Wendy

 

 

 

 

Our son continues to make progress. Guess we'll never know for sure how much of a difference those 2 additional rounds of IVIG with Dr. K last summer made. All we know is, post-IVIG progress was minimal... until we started the mega-dose augmentin, and then everything accelerated.

 

I'm holding my breath and praying a lot right now, as we enter the cold and flu season and our other 2 boys bring home various bugs. A year ago at this time, we were 2 months post-IVIG round 1 with Dr. K, our son was 70% improved, and we thought the nightmare was over. Then infections started hitting, and everything went downhill. I'm scared to death sometimes that history will repeat itself!

 

Thanks for the info about IVIG continuing to work long after the original infusion. That's hopeful!

 

Worried Dad,

 

Follow up IVIG was done by immunologist for CVID. However Dr. B (another immune doc) gives much higher doses for autoimmune issues associated with CVID. Not a standard protocol. First IVIG was done by Dr. L, seemed low compared to what she is prescribing now. I am not too concerned though because my dd cannot handle too high a dose. She reacts bad to the IVIG. Her one eye even gets lazy for a week after each infusion. ODDD??? How's your son doing? I know he is on high dose augmentin, but I have also been told IVIG keeps altering the immune system and you can see changes up to 2 years. (A neurosurgeon told me that IVIG has many things unknown about how it works, but that IVIG can alter the immune system in different ways over time, they even have seen changes up to two years post? )