kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
My daughter has been on IV Rocephin for four months. The last two nights, about five minutes after her infusion she has been having uncontrollable jerking, shaking, feeling very cold. She also feels like her body is going numb.
This lasts for about 20 minutes and then goes away.
Has anybody else had this reaction? I'm not sure if we should infuse tonight or wait to talk to her doctor tomorrow.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I don't know the answer to your question, but I think it may be best to skip the infusion until you speak with her doctor. Missing one dose is not really detrimental.
Let us know what her doctor says.
Posts: 4681 | Registered: Oct 2000
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Thanks Sammi. Sometimes it's so hard to know what to do. We are going to skip it tonight to be on the safe side.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My 15 year old did IV rocephin for 10 months and never had anything close to this happen. It has to be scary for you. I think I would opt to skip a dose and touch base with the doctor. The next dose may be an even worse reaction.
Did she take anything over the counter that is new and may have interfered? Allergy med etc.
I wish you the best. I hope she can stay on IV's if that is what her body needs to get better.
Kari
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
She started on Bactrim, Zith, and Tindamax on Sept 20th along with the IV Rocephin. She only does the Tindimax two days per week.
As far as anything OTC, no, she hasn't been doing anything new.
I'm really scared that she could have a worse reaction and we don't have a hospital near us, so we will just skip it tonight.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Wow how scary! I would skip it too until you talk to your doctor.
I only lasted 10 days on Rocephin... each time I dripped I got a reaction. I stopped when my airways were tightening. I didn't have the shake but it burnt a hole in my stomach. That was a hard drug for me. Anyway, my Pharmacist said that not all allergic reaction happen during the first dose... sometimes you can develop a reaction slowly over time.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Well, here I am again!
She had the shaking/tremors/muscle spasms for two nights. We skipped one night, talked to Dr. J's office on Tuesday.
They said to give her Benadryl 30 minutes before infusion. We did this for two nights without a problem.
Thursday night she did the infusion without Benadryl because it makes her so sleepy. She had a horrible reaction that night.
She had a little chest tightening, horrible muscle spasms, and severe pain in her back and hips.
Friday night we went back on the Benadryl and she did fine. Tonight she took her Benadryl and STILL had somewhat of a reaction. Not as bad as last night, but she was shaky and cold.
I'm not really sure what to do at this point.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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