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Hmrz

First ivig next week

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My ds9 is having his first ivig next week in our home. I fear he will not be able to follow through because of his fear of the iv. Any suggestions about how to prepare him? Also I know each situation is unique but what was the first sign after ivig that you were on a good path for recovery?

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I wish you every success with this--

A lot depended on the nurse in our experience-- if she was upbeat and "matter of fact " about it then it went well....

Be sure he is very well hydrated the 24 hours before -- and new distractions are on hand--

Games, movies , etc. Special foods and drink on hand -- are you having steroids too with it? Some doctors prescribe that at the same time --

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Thank you so much for your response T_mom. After lurking for some time and reading all the post it is so comforting to have a nonjudgmental oasis. This disease has really shown me the beauty of finding a support system and community. There's my silver lining!

The doctors order does include steroids through the IV for the 2 days he is having the ivig. Also Benadryl and Tylenol. He will continue with abx after.

It's such a mixed bag of emotions. Hoping for the very best but not wanting to need it so much that it is a crushing blow if we don't have a possitive result.

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Baxter pharmaceuticals has a free play therapy kit for kids for IVIG which includes books, magazines, even a bear with a practice IV kit so they can prepare themselves for the procedure. It's free, and was a real help for my kids. Their patient advocates are excellent too and may be able to offer you more tips. They gave me some great advice going into our first IVIG last year.

 

http://www.immunedisease.com/help-and-support/baxter-resources/therapeutic-play-kit.html

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We did not use any of their products either, it doesn't matter. They will still send you the kit, and like I said their patient advocates are great. They even called me back after each child's first infusion to just check in and see how they did. It was so nice. And they really did give lots of helpful tips (many which are shared here - like hydrate, benedryl/motrin pre-med, etc...)

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T_mom summed it up very well. A upbeat nurse was a huge factor with my DD. She kept my daughter at ease got the iv in and played with her all day. You may want to ask about having some anti-nausea medication on hand. My daughter has had IVIG twice and both times after day two she has had vomiting and bad headache for about five hours. This showed up about 5-8 hours after infusion. Good luck you will get through this!

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Thanks for the support and advice. My son had his tonsils out 4/5 weeks ago and he never took the anti nausea meds. I will call his doc and see if I can use those if needed. I hear that a headache after infusion is a good sign. Never thought I would hope for that! As far as an upbeat nurse, I'm hoping that the nurse they send is experienced in pediatrics. I also has tried to schedule visitors through the day if he is able. ( no kids just Auntie and other adults that love him) that is very tentative.

Hoping that the ivig will help him heal enough to return to school. He has missed so much life already. Just pray that when we get to the other side of this nightmare he will have an experience that make him a stronger more compassionate man.

Holly AkA Pollyanna

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Matter of fact attitude and calm reassurance helped our daughter (12 yo) through her fear. Lots and lots of liquid is critical. Yes, start that liquid a day or so before, and keep pushing liquids for days afterwards! Our daughter wasn't crazy about Gatorade, but did drink a few, but drank a lot of LifeWater. She probably had about 6 bottles per day during the 2 day procedure. The following day she slowed down a bit and ended up with a horrible headache. I don't really subscribe to the headache is a good sign thought. The dr. increased her pain meds for 24 hours and we went right back to pushing those fluids. She was on high fluids for a week. When she went back to school, I sent her with one or two drinks per day for a week and talked with her teachers about allowing her to have them to prevent headache. They were very cooperative and my daughter did not get any more bad headaches...Some initial signs following ivig that there was some progress included her willingness to go downstairs by herself (which previously she was scared to do) and some increased independence. However, there was not a lot of progress within the first four months. After that, the progress became rapid. We are 10 months post ivig and she is doing so well. Not 100%, but probably 95%. She and our family are so different than we were a year ago. We are so grateful. I wish you the best with your son! I hope the procedure goes smoothly and that ivig does for him what it did for my daughter. Blessings!

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I have started pushing liquids for the ivig on Wednesday. I can't tell you how valuable it is for me hearing all of your stories and experiences.I spoke with our nurse today and she was very reassuring.she has worked with other pandas kids so that helps.

Has anyone premedicated for ivig?

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hmrz: I am curious why a headache is considered a good sign after Ivig? My ds had a headache, was give one dose of steroid to zap it and it worked. We had great results from IVIG so I am curious what the headache theory is....

 

Best of luck! :)

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First day of IVIG done and ds did amazing. I have no idea what the result will be but today was a good day, I'm so proud through fear and anxiety my little guy with a tear in his eye said," lets do this thing before I change my mind."

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