IVIG treatment in 1 week

[Tico421]

Hi, let me give you a little background on myself. I'm 15, developed PANDAS after I had lymes disease at the age of 12. I had IVIG treatment done June 2009. I felt better the morning after the treatment for a good 1 and a half years. The only thing is, is I had Serum Sickness. I had flu-like symptoms for about 2 days a week after the treatment. My Neurologist said that she was going to treat me with a heavy dose of steroids before the treatment to numb the symptoms but I'm still very nervous. Has anybody had experiences with heavy doses of steroids before the IVIG?

 

Edit: She's also going to keep me on a six year antibiotic treatment to make sure I don't catch strep again.

Edited June 18, 2011 by Tico421

[kimballot]

Tico - glad to hear from you. It sounds like your family is really on top of things and you have been getting good treatment. My son had steroids(I don't know if they were heavy doses) before and for a few days after his IVIG and he did very well - no nausea or flu-like symptoms. He did drink a TON of water though - I had him drink about 6 water bottles the day before, and about one water bottle every 60-90 minutes during IVIG and for 2 or 3 days after. He also took benadryl - you can ask your doctor if s/he recommends that.

 

It is good that you've gotten treatment before and that you are getting it again soon. My son had some PANDAS symptoms return after his first IVIG because he needed treatment for many years and had never gotten it. He has had another IVIG since then and had no setbacks. It sounds like you and your family are getting treatment right away.

 

Please let us know how it goes! Best wishes!!

Edited June 18, 2011 by kimballot

[PowPow]

My 13 yo (who also had lyme at onset of PANDAS/PITANDS) just had her first IVIG about a month ago. She was given IV steroids each day-- about 60 mg, I think-- she weighs about 60kgs. It was ana IV push after the IVIG was completed. Here we are almost a month post and we restarted them (orally) as her situation has declined.

 

She was ill with the typical vomiting/severe HA post IVIG, despite the steroids.

 

Best wishes to you, Tico421!

[Tico421]

Thank you both! I honestly am afraid and hate throwing up but I guess this is all worth it.

 

@kimballot I'm glad your son has felt better I hope it goes the same for me.

 

@Powpow Thank you for your imput aswell and I hope your daughter feels better.

 

God bless you both.