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Wilma Jenks

Preparing for IVIG

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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.

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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!

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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!!!!

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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.

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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

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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

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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.

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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.

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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...

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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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