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Preparing for IVIG


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11 replies to this topic

#1 Wilma Jenks

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Posted 21 April 2011 - 01:09 PM

How can I explain this procedure to my child. I don't need to give her details, but a little info.
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.


#2 tampicc

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Posted 21 April 2011 - 01:52 PM

Wilma, I posted two links below for you to look at and see if they might help your child. My son is young and very afraid of needles, so I just told him "We are going to Dr. K again, and he has some special medicine for you that will give you lots of good guys to fight bad germs." We read the book linked below, but I only printed the first half and stopped before it showed images of the boy hooked up to an IV. My son got very excited about the 'IVIG medicine', and started talking about when he got to drink it. (((gulp))) I didn't have the heart to tell him about the IV part.

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:

http://www.immunedis...erapeutic-play/

Here is an online printable book about the immune system and getting IVIG for children:

http://www.primaryim..._05_05_2008.pdf

#3 dcmom

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Posted 21 April 2011 - 02:10 PM

Wilma-

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!

#4 ShaesMom

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Posted 21 April 2011 - 02:11 PM

I say give her the medical supplies first and let her practice and take the bear with when she has IVIg. My kids love this bear so much that we have ordered more than one. It is great for kids!!!!

#5 lmkmip67

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Posted 21 April 2011 - 02:26 PM

We are going next Wednesday and my son is 7. I am not going to tell him until maybe Monday. I am just going to tell him that we are going down to see Dr. B, and the nurses at Dr. B's office are going to give him some medicine that hopefully help his OCD (that is the part that bugs him the most). I will tell him it will be given through a needle, kind of like when he gets blood work done (he is fine with that now, so will be ok with that explanation), but that there is a little tube attached to it that delivers the medicine to his body. I won't tell him about any side effects or anything like that. Just that we get to watch movies and play games all day while at the Dr. I also told him we will bring some favorite snacks and that daddy gets to come this time and we can stay overnight in a hotel. He loves hotels, so that should sound fun. I didn't order the bear as he is not a stuffed animal fan, and may be a little old for it. Once he understands something, he is usually ok, so I don't think he will have to many issues.

#6 Wilma Jenks

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Posted 21 April 2011 - 02:40 PM

Is it a 2 day procedure? If she keeps IV in over night, I guess she can't swim, right? She is 12 and almost 12, and a bit more difficult these days to get to do things. Ugh! The bribes just keep getting bigger and more expensive. LOL

#7 nicklemama

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Posted 21 April 2011 - 02:44 PM

My DS7 is scheduled for IVIG in 2 wks w/ Dr K. He said swimming will be fine and he encouraged it.
DS10, dx 2010 PANDAS, 1.5yrs after first symptoms
IVIG #1- May 2011, IVIG #2- Nov 2012
Ehrlichia, anaplasma dx Mar 2013
Lyme dx 2014

#8 kimballot

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Posted 21 April 2011 - 03:06 PM

The nurses are really great and will make her feel comfortable. Bring DVDs and a DVD player if you have one (they have some at Dr. Bs office too). Tell her she can order take out food, watch TV and movies, and play video games (if you have a portable player for her). I wouldn't make a big deal out of the IV. Tell her she will get the medicine through a tube in her hand and they wrap some elastic on her hand to keep the tube in place, and she gets to pick the color elastic she wants. If you are going to Dr. Bs she will also get to sit in a big reclining chair that she can make heated or she can make it vibrate.

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!


#9 SSS

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Posted 21 April 2011 - 04:18 PM

I thought about getting the IV bear and kit, and think it is awesome that it is available, but I thought it might make my dd more obsessed about actually having a needle stuck in her arm. She had developed a distrust with me about needles with the many blood tests we have done over the last 3 years.
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.
Daughter 9, PANS, probable congenital Lyme,
started biomedical treatments w/DAN! and GF/CF at age 4
Cam K 175, 2 HD IVIG's, 2 LLMD's- improved, but still challenging in areas at times.
Mom-tested positive Igenex PCR Lyme, and positive Bartonella 2011.
Went through extensive Lyme/Bart treatment, lasting improvements.
Mom still working on gut health, and
6/14 daughter heading back to LLMD for more help after a long break.

#10 peglem

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Posted 21 April 2011 - 04:27 PM

Before our 1st IVIG, we used the bear playkit for my then 15 year old, nonverbal daughter, who was terrified of needles and blood draws were major trauma. The play kit really helped because we got to pretend how the bear (well actually we did all her stuffed toys over and over until she seemed satisfied)felt, how he was scared but knew he needed the medicine to feel better and how brave he was. It greatly reduced my daughter's anxiety knowing what was going to happen. Of course, you know your child best, but sometimes letting them know what is going to happen and what is expected of them can be calming.

-Peggy, mom to 19yo PANDAS daughter w/ onset probably in infancy. Manifests w/ severe autism symptoms and currently nonverbal.


#11 dcmom

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Posted 21 April 2011 - 05:28 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?

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...

#12 eamom

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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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