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Saw our immunologist last week hoping for his cooperation with at least a single HD IVig for DS. He surprised me by wanting to order three months in a row at 2g/kg and then drop down to 1g/kg monthly thereafter (we do have documented hypogammaglobunemia). I began to wonder if it is wise to do three months in a row. Any known reasons why I shouldn't do three months in a row at that dose?


- K



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Sounds like he wants a strong "loading dose" and drop to a maintenence dose. It may be connected to how low your child's numbers are and how sick he/she has been. Sounds like a good plan to me.


My kids were treated for hypogammaglobulemia as well. Numbers are normal now and the immuno is giving them a HD "send off" at the last infusion this month. They improved with only .5g/kg (after a 2g/kg loading dose a year earlier)

Edited by Gpookie
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Even better if you get 6 HD mostly doses in your child before dropping him. My dd has has both HD and LD. She has had LD @ .85 g/k for 3 months close in time to her onset which made her exponentially worse. It induced hallucinations, mutism, seizure like activity, etc. HD has been given to dd monthly for about 3 years. Worked for sure very well for the first 1.5 years. After that, not sure, but, we kept giving it because we tried other treatments as well and none of the MD's wanted to rock the boat and wean her. Duke U. treats with 2g/kg for the 1st month then usually drops it down to 1g/kg for 6 months along with immunosuppressives, but, that made my dd worse so i added my own IVIg to their protocol (under other MD supervision!) because practically speaking, 1g/kg usually isn't enough to do the trick. If your child does worse when you lower the dose you need to increase it IMMEDIATELY.

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