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failed IVIG attempt today


AmberM
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My 3yr old dd was scheduled to have her first IVIG yesterday and today. Everything went really well yesterday and she received half of the 24grams of medication. Today went horrible and after 3 hrs and 9 sticks, the nurse was unable to successfully get a vein. My dd has horribly tiny veins and we've struggled with blood draws in the past. We've had so many failed attempts but never anything this traumatic. I'm feeling really discouraged right now and concerned because she only received half of the treatment. The nurse isn't coming back until Monday so if that is successful, she will have received the first half on friday and the second half on monday. When I called our dr. he really didn't have anything to say. I asked him if the 12 grams she received would be better than nothing and he said he didn't know. I was wondering if this has happened to anyone before? Would the spacing between doses mess everything up? It's almost like getting two low dose treatments. I've read on here that low dose is not good for PANDAS.

 

The nurse that the company sent out is their best pediatric nurse. They said if he couldn't get the vein, they wouldn't be able to help us. I do think he was good but those darn i.v.'s are so flimsy. If she even flinched a tiny bit, the whole thing would shift and he would have to start over. I've never been so stressed and upset in my life. Our dr. prescribed vallium but that stuff didn't do anything to calm her nerves. Any help would be appreciated......I'm feeling totally deflated and depressed.

-Amber

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Needles cause a lot of anxiety for my daughter. We used to have a minimum of 3 nurses + myself and my oldest daughter to get the needle in. There were a few times that they had to use ultrasound to find deeper veins to get my daughter hooked up. She has a surgically implanted port now, but you wouldn't do that unless you need chronic access. So, sorry this is happening- poor little girl! Do you use emla cream to numb the area 1st? I even do that with the port- it really helps! If you are trying again Monday, try hard to uber hydrate on Sunday. And dang it- once that needle is in, they better tape it like crazy to keep it in place! I wonder if it would help to get it done at an infusion center?

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I am so very sorry for you and your little girl. It must have been horribly disappointing and anxiety-provoking for you...not to mention traumatic for her!

 

Be sure to have her drink lots of water tomorrow. That may help to make her vein more accessible.

 

Also, if that does not work, ask the doctor about subcutaneous immunoglobulin. I am not sure if you can mix it with regular gammaguard or gammunex, but maybe it is something you could use in the future? http://www.cslbehring-us.com/s1/cs/enus/1151517257039/content/1151517257011/content.htm

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Hydrate, hydrate, hydrate!!!

 

Have them use EMLA cream for her so she won't feel it when they stick her.

 

((((hugs)))) to you and her :(

 

I think even half is better than nothing.

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Oh gosh, I am so sorry :-(

We are going for our 1st (pray last) IVIG tomorrow! The scariest part for me is going to be her reaction to it (massive, massive anxiety) We bought her a DS and Mario game (she has never had this) and plan on handing it to her when time for the needle part.

All weekend, I am giving her watered down juice drinks she never usually gets- cranberry juice, some Honest Kids juice boxes- and she is drinking a lot.

Sending PV's---------

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thanks for all the kind words of encouragement and support. I feel a little better today after sleeping a little. We did use the emla cream but I don't think it was on long enough. The first day, it was on much longer and she even watched the needle go in without anxiety. Today she is acting like nothing happened so hopefully most of the trauma is on my husband and I. I will need to just follow dd around with a syringe of water all day and make sure she gets a decent amount down. I bought a heat mit as well to try out. I'm also planning to build a little splint to tape her arm down..... I've seen this at the clinic my dd got hyperbarics at. If I can just prevent her from wiggling her wrist, I think we'll be ok. I can take it off once all the tape is down. Can you tell I've been up all night strategizing? :) I've got to get this IVIG into her and get her better!

 

Thanks again......I needed to hear from people who have "been there and done that."

-Amber

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Amber, Dehydration can be an issue with IVIG treatments. I don't know what kind of IVIG she is receiving but lots of water, electrolites and the possibility of infusing with saline to help with the hydration, consult with your Dr.

 

Adam

 

 

 

My 3yr old dd was scheduled to have her first IVIG yesterday and today. Everything went really well yesterday and she received half of the 24grams of medication. Today went horrible and after 3 hrs and 9 sticks, the nurse was unable to successfully get a vein. My dd has horribly tiny veins and we've struggled with blood draws in the past. We've had so many failed attempts but never anything this traumatic. I'm feeling really discouraged right now and concerned because she only received half of the treatment. The nurse isn't coming back until Monday so if that is successful, she will have received the first half on friday and the second half on monday. When I called our dr. he really didn't have anything to say. I asked him if the 12 grams she received would be better than nothing and he said he didn't know. I was wondering if this has happened to anyone before? Would the spacing between doses mess everything up? It's almost like getting two low dose treatments. I've read on here that low dose is not good for PANDAS.

 

The nurse that the company sent out is their best pediatric nurse. They said if he couldn't get the vein, they wouldn't be able to help us. I do think he was good but those darn i.v.'s are so flimsy. If she even flinched a tiny bit, the whole thing would shift and he would have to start over. I've never been so stressed and upset in my life. Our dr. prescribed vallium but that stuff didn't do anything to calm her nerves. Any help would be appreciated......I'm feeling totally deflated and depressed.

-Amber

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I think it will be fine to get the 2nd 1/2 today.

 

If your dd ever needs more IVIG's...ask about leaving the IV catheter in (from the first day) so they can use it the 2nd day. That's what they did for my dd for her 2nd HD IVIG. THey just wrapped her hand in a bandage to keep the IV protected.

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Thanks for all of the concern. The nurse came back on Monday and tried again to find a vein with no luck. The company sent their two best pediatric nurses. The gammagard is sitting in my fridge right now...... pretty disappointing to say the least. As one last ditch effort, they wanted me to go down to the E.R. tomorow morning to have a line put in. I guess the hospitals have infrared machines to find veins. We've decided it would be too traumatic for my dd. When I talked to the people in the E.R. on the phone today, they didn't seem to understand PANDAS or autism and I just had visions of us waiting for hrs and then getting back there and having a nurse come over and manhandle my dd and possibly not find a vein.

 

I found a company in New York that will rent one of those infrared vein trackers so I think we're going to go ahead a rent one for the next IVIG. I can take my dd to the hyperbarics clinic and they said they would use a little versed to sedate her and then the nurse can track the vein and do the infusion there. I think that will be the best bet for next month. It doesn't seem to be an issue of hydration with my dd, her veins are just tiny and completely invisible. I don't know how she got dealt such a bad hand. :(

 

thanks again for all the support.

-Amber

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