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We have been doing ivig monthly for opsoclonus myoclonus syndrome (a neurological/neuropsychiatric autoimmune disease with many of the same symptoms as PANDAS) for about 7 years. About two years ago, my daughter began to experience aseptic meningitis about 2-3 days post infusion which would cause extreme migraines, nausea, and vomiting. I began treating prophylactically with ibuprofen (which has since become a part of her daily med routine) right after infusion for 3-4 days and the migraine and nausea went away. We have also used zofran for nausea post chemotherapy ( also used to treat the OMS) and it worked really well. Best of luck!

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We have been doing ivig monthly for opsoclonus myoclonus syndrome (a neurological/neuropsychiatric autoimmune disease with many of the same symptoms as PANDAS) for about 7 years. About two years ago, my daughter began to experience aseptic meningitis about 2-3 days post infusion which would cause extreme migraines, nausea, and vomiting. I began treating prophylactically with ibuprofen (which has since become a part of her daily med routine) right after infusion for 3-4 days and the migraine and nausea went away. We have also used zofran for nausea post chemotherapy ( also used to treat the OMS) and it worked really well. Best of luck!

Thanks for sharing rjayne. I remember your previous post - how is your daughter doing?? You've been through so much - I'm so sorry!

 

How many days can a child be given Zofran?

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Zofran was given and prescribed often when my son was at Georgetown. It is a benign drug. Often given to people who have something as simple as the stomach flu. Have no worries giving this to your daughter.

 

What is interesting is that when he started getting iv steroids with his ivig he no longer had any headaches or nausea. We no longer needed the zofran.

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Has Dr. B, or any doctor, ever prescribed a prescription med for severe nausea? Or to counter the nausea experienced after IVIG. Zofran was mentioned to me as one type of medication. You can pm if you like. My daughter is 10 and weighs 70lbs.

 

My daughter has severe nausea and is unable to go anywhere. I need something to help get her to CT.

 

Thank you.

 

If you ever want something OTC for motion sickness (car, boat, etc) I would highly recommend Cyclizine. It is the active ingredient in "Marezine" http://www.drugstore.com/products/prod.asp?pid=16152&catid=183030&aid=338077&aparam=marezine_for_motion_sick&CAID=6be4bded-455a-444b-8cd8-8ebe6a33067b and "Bonine for Kids" http://www.amazon.com/Bonine-Motion-Sickness-Tablets-Berry/dp/B0013NE374/ref=pd_sim_hpc_3 "Marezine" is hard to find (Walgreens special ordered it for me, or you can order it online)in stores. I don't know how easy it is to find "Bonine for Kids" in the stores, although you can always order it.

 

I've tried multiple other motion sickness meds including Dramamine, Meclizine (the active ingredient in the adult Bonine) which made me really sleepy but didn't stop me from non-stop vomiting and nausea on a boat ride.

 

When I went on a boat trip (which left in the morning), they also recommended taking 1 dose of the motion sickness med the night before, then another dose in the morning.

 

Note: I have no idea if Cyclizine (Marezine or Bonine for Kids) helps other types of nausea (from IVIG etc.), you might stick with zofran for that.

Edited by EAMom
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Zofran was given and prescribed often when my son was at Georgetown. It is a benign drug. Often given to people who have something as simple as the stomach flu. Have no worries giving this to your daughter.

 

What is interesting is that when he started getting iv steroids with his ivig he no longer had any headaches or nausea. We no longer needed the zofran.

Was told by immuno office not to use more than two doses of Zofran (one b4 the train trip up and one b4 train back). :-(

 

I was planning on giving the Zofran the night before the day of the train ride just to relieve her nausea for 12 hours before the trip.

Edited by philamom
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Has Dr. B, or any doctor, ever prescribed a prescription med for severe nausea? Or to counter the nausea experienced after IVIG. Zofran was mentioned to me as one type of medication. You can pm if you like. My daughter is 10 and weighs 70lbs.

 

My daughter has severe nausea and is unable to go anywhere. I need something to help get her to CT.

 

Thank you.

 

If you ever want something OTC for motion sickness (car, boat, etc) I would highly recommend Cyclizine. It is the active ingredient in "Marezine" http://www.drugstore.com/products/prod.asp?pid=16152&catid=183030&aid=338077&aparam=marezine_for_motion_sick&CAID=6be4bded-455a-444b-8cd8-8ebe6a33067b and "Bonine for Kids" http://www.amazon.com/Bonine-Motion-Sickness-Tablets-Berry/dp/B0013NE374/ref=pd_sim_hpc_3 "Marezine" is hard to find (Walgreens special ordered it for me, or you can order it online)in stores. I don't know how easy it is to find "Bonine for Kids" in the stores, although you can always order it.

 

I've tried multiple other motion sickness meds including Dramamine, Meclizine (the active ingredient in the adult Bonine) which made me really sleepy but didn't stop me from non-stop vomiting and nausea on a boat ride.

 

When I went on a boat trip (which left in the morning), they also recommended taking 1 dose of the motion sickness med the night before, then another dose in the morning.

 

Note: I have no idea if Cyclizine (Marezine or Bonine for Kids) helps other types of nausea (from IVIG etc.), you might stick with zofran for that.

Good to know - thanks.

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Yes, it was a surreal experience (after taking Cyclizine for a boat ride which normally would have made me barf non-stop) to then be able to read the guide book in the car that afternoon. I have NEVER been able to read in a moving car without getting nauseated until Cyclizine.

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Yes, it was a surreal experience (after taking Cyclizine for a boat ride which normally would have made me barf non-stop) to then be able to read the guide book in the car that afternoon. I have NEVER been able to read in a moving car without getting nauseated until Cyclizine.

Sounds good to me. Pharmacy doesn't have the kids version (bonine kids) in stock but will by tomorrow. thx

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