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Posted

Can anyone share the protocol that Dr. B, Dr. L, Dr. K, etc. are using for HD IVIG. I would also like to know what product they are using (Gammaguard, Octogam, etc). Finally, what other meds are given to reduce side effects? Anti-nausea, steroids, etc.

 

We are getting close to starting this treatment for my DS14 but I'd like to do my homework before we give the doctor the green light.

Posted

We used 2grams per KG divided over two days. We used Gamanex (sp?) It was recommended by our kidney doctor because Gamanex has the lowest sucrose and osmolarity which would be best for his kidney(he only has one). The night before he took an allergy pill (allegra, claritan etc.) an hour before procedure he took benedryl and tylenol. He also took another Benedryl after four hours because he tends to have an asthma reaction to the IVIG although he typically dosent have asthma.

Posted (edited)

1.5 over two days of Gammagard - Dr B - 1 liter of dextose sugar water is infused each day at the same time.

 

Benadryl/Motrin every 6 hours three times a day (9,3,9). We continue few days afterwards. Additional dosing may be needed through the night.

 

We give 1 solutab of Orapred 15mg on infusion days only, with food. Zofran on hand. Plenty of fluids.

Edited by philamom
Posted

2gm/kg divided over 2 days. One child gets Gamanex and one Privigen. The child that gets Privigen has multiple allergies and I think Privigen is very pure. We see immunologist next week and I am going to ask more questions on why she uses one brand over another.

We premedicate with a steroid taper which starts two days prior (40mg qd x 4d, 20mg qd x 2d, 10 mg qdx 2 days, then 5mg qd x 2 days. we also premedicate with Benedryl, tyelenol, and Pepcid one hour before infusion each day. We up fluids for several days before the infusion and have never had any side effects doing it this way.

Posted

Thanks for the responses.

 

Mom MD - if you think of it after your appt. with the immunologist, please post the doctor's reasoning for using one product vs. another.

 

Anyone have experience with Octagam?

Posted

One child was given Gamunex and the other Privigen (privigen was done at the hospital and Gamunex was done in Dr office). We actually understood that Privigen was more of a "Standard" product and the Gamunex was a higher quality (more pure processing) than Privigen. So, now that I read mom md 's comment, I wonder how both received opposite information.

The child who received the Privigen developed an autoimmune hemolytic reaction post infusion, however, that was most likely a reaction she had to IVIG versus a reaction caused specifically by the Privigen.

Gamunex is used by a different large, respected hospital we also sought treatment at and was their recommendation, as well.

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