Preparing for IVIG
Posted 21 April 2011 - 01:09 PM
It there a pic line, like in the PEX? Is there blood work done b4 hand? Do they fast. I guess Dr. B will explain this, but any info. from you would be appreciatied. Also if you have any tricks to getting insurance to pay, would be great. All her tests come back looking pretty good, accept the Cam Kinase and One Test for Clostridia.
Posted 21 April 2011 - 01:52 PM
I asked Dr. K at our pre-IVIG appointment to explain to my son what was going to happen, and that my son thought he was going to drink the medicine. Dr. K did a great job. He said "Okay, tomorrow, we are going to give you some medicine, but it tastes REALLY BAD if you drink it, so we are going to put it in your skin, okay?" And he held my son's arm and touched it. My son was a little distrustful, but okay with this. I won't say he didn't cry and protest the next morning, but he got through it okay with his favorite stuffed animals along.
I think it is probably best with an OCD child to minimize and delay the discusion to avoid the anxiety the child may experience.
Here is a FREE IVIG teddy bear with play IV supplies you can order for your child. You might want to just give her the bear, but keep the medical supplies it comes with to use at the infusion center, and not cause anxiety before. You could present the whole thing to her on the first day of IVIG perhaps. Just request one by entering your name and address on this website, and it usually arrives quickly:
Here is an online printable book about the immune system and getting IVIG for children:
Posted 21 April 2011 - 02:10 PM
Go online to Baxter and order their play IVIG kit. Both of my kids loved it. It comes with a blue teddy bear, and real ivig/nurse supplies- they can play IVIG! My kids did it before, during and after- and still do over a year later!
Posted 21 April 2011 - 02:11 PM
Posted 21 April 2011 - 02:26 PM
Posted 21 April 2011 - 02:40 PM
Posted 21 April 2011 - 02:44 PM
IVIG #1- May 2011, IVIG #2- Nov 2012
Ehrlichia, anaplasma dx Mar 2013
Lyme dx 2014
Posted 21 April 2011 - 03:06 PM
Be sure to have her drink lots of water starting the day before, and be sure to have her drink lots of water during. Also, follow their recommendations re: steroids, ibuprofen, and benadryl.
Edited by kimballot, 21 April 2011 - 03:07 PM.
Parent of teenager with PANS from young age. Mild primary immune deficiency. Chronic sinusitis. Possible bartonella, Antibiotics. IVIG. History of severe exacerbations. Continues to show improvement. There is hope for our children. Let's work together for early identification and treatment!
Posted 21 April 2011 - 04:18 PM
I told her about 3 days before. Explained the procedure. No, it was not easy, they are scared, but I remained calm, and re-assuring. Matter of fact, we have to do it, I will be with you the entire way through, sitting right next to you (and we squeezed into that big chair together.) It is a 1x quick stick (what I told her, over fast) We did bribe the first one with telling her she would get a new DS as soon as the needle part was over. I brought my DH with me for the 1st one.
She left the IV in over night (thank goodness) she understood if she did not, she would have to get re-stuck the next day. We made a big deal of it being a 'cast' (white cotton sleeve over the IV and her arm)
The day of your first infusion, I don't think she'll be swimming, no. Resting.
For the next day, we just kept re-assuring her it was the last day, it would be over, taken out, DONE!
The only thing that worked for us to 'do' during the IV procedure was watch DVD's. In our case, Sponge Bob over and over. She didn't want to play electronic games, one arm is resting, they are somewhat tired. Brought fun snacks, sandwiches, juice boxes, plus they had a toy goody bag for her.
For our 2nd, I told her 3 days before as well. She was mad and sad, but then was okay! No bribe necessary. I was able to take her to this one by myself (we had them done locally.) Same thing, watched DVD's, she was able to leave the IV in overnight.
I just explained it was going to help her feel better. I am making it sound easy, there were some fears, for sure, but it really is doable.
started biomedical treatments w/DAN! and GF/CF at age 4
Cam K 175, 2 HD IVIG's, 2 LLMD's- had improved, but still challenging in areas at times.
Mom-tested positive Igenex PCR Lyme, and positive Bartonella, 2011.
After long tx break for dd9, where we backslid, in Spring '14 decided to resume tx for Lyme and co-infections,
with LLMD, and finally saw a PANDAS specialist (amazing experience and person)
and as a result, have a wonderful new baseline! (everything crossed!)
Posted 21 April 2011 - 04:27 PM
-Peggy, mom to 19yo PANDAS daughter w/ onset probably in infancy. Manifests w/ severe autism symptoms and currently nonverbal.
Posted 21 April 2011 - 05:28 PM
For the record- my kids had pex, not ivig.
They have gotten a ton of use out of it since having the procedure- so I think even if you have done it already- it can still be positive play therapy. My younger daughter even went so far as to make a pretend pheresis machine out of a shoebox...
Posted 22 April 2011 - 02:02 PM
I will second what peglem said- I have two pandas daughters, both ocd, both TERRIFIED of needles and medical stuff, both react very differently to things, and both LOVED the Baxter IVIG bear- one was 6 and one was 9 at the time. I was nervous to give it to the one who had it first- thinking it would make her afraid- I think it made her feel in control- in a very positive way. When it was the nine year old's turn- she said will I get to have the bear too?
It would be really funny if Baxter gave out Panda Bears in their kits.
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