IVIG- next step. Probably within a week

[JenniferG]

Meg started her steroid taper today. WOW! What a rage! Spoke to MD, he said it was because of the taper and said it wasn't enough ( he originally only gave her 1/2 dose). So he bumped her up.

 

We saw LLMD today. No Lyme concerns. Was very pleased that the natural antibiotic showed the side effects.....that means its working. When I said the Immunologist thought IVIG, he said do it.

 

So my questions now are, what next? The office said to just call tomorrow and schedule? Do they have a protocol? Any tips out there for a "low side effect"? I did my research on risks.....but didn't understand dosing? I would guess there is a standard mg/kg dose. Does anyone have IVIG experience with Dr. B?

 

Thank you!!

[ShaesMom]

LOTS of H2O the day before, day of and for a couple of days after. Either Tylenol or Ibuprofen about an hour beforehand along with an antihistamine.

[beeskneesmommy]

Dr. starts with 1.5 g/1 kg per weight. He uses Gammaguard. Start pushing liquids several days prior, during and after. I am pretty sure his protocol is to push an IV fluid bag prior to the IVig product and includes steroids. He also doses oral Benedryl and Ibuprofen or Tylenol. He is our doc but so is Latimer. We did IVig with her about 6 weeks ago. The diff. is that she doses Zofran (antinausea) IV with the fluid bag and then has you give it orally round the clock throughout and afterward. She also alternates Ibuprof. and Tylenaol every 4 hours orally round the clock during and several days after. I believe that this additional med protocol made it easier for my 6 yr. old son. lastly, her IVig product is Gamunex and she doses 2 g/1 kg.

[NancyD]

Best to stick with ibuprofen -- and NOT use Tylenol, as that lowers the glutathione levels.

[kos_mom]

Nancy,

Daughter was in the hospital with aspetic meningitis among other things and I asked about motrin instead of tylenol for pain. They said motrin tends to lower blood pressure and that is contraindicated for meningitis. Had never heard that before. When we did IVIG at Georgetown they said do only tylenol. Am wondering if the blood pressure effect is a reason for not relying on motrin.

Lo's Mom

[ptcgirl]

Fluids before, during, and after IVIG help with headaches. Ibuprofen and benadryl every 6 hours afterwards (they will give you a sheet on this at the IVIG center). I also asked for a script for zofran in case of vomiting, but haven't needed it. They give the steroid through the IV. Very easy process for us so far (DD had 3 in 2012). Dr. B's nurses really know what they are doing. Just listen to them and (try to) relax. It seems much more overwhelming than it actually is. Make sure to bring things for your child to quietly do at the center. There is wifi and a tv in each room. There is also a small refrigerator and microwave at the center for snacks/lunch. Good luck! I hope the IVIG really helps!!!

[SurfMom]

Jennifer, good thoughts for you as you continue the taper and start this process!