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Advice for us? IVIG scheduled for this week.


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Greetings,

We have IVIG scheduled for our 5.75 year old daughter this week. Been at this Pandas/Pitaid thing for 2.5months. Seems our story has been told on this forum 1000 times by other parents.

 

Any advice to help the two day process go well?

 

Thanks for your time,

 

Joshua

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Hydrate, hydrate, hydrate. My son starts drinking a lot of water 1 week prior and I start dosing Ibuprofen 600mg every six hours the day before, the days during the treatment and for 2 days after. Also, keep up with hydration during treatment and for 1 week after.

 

Get a cup with a straw (ours is 24 oz) - kids seem to drink more water from a straw.

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Welcome Joshua. Good luck to your daughter and I hope the IVIG brings healing.

My son had IVIG last month. He doesn't like to drink a lot, so we gave him lots of popsicles and jello and fruits like watermelon, canteloupe and grapes. We started giving him extra fluids 2 days before and during and also for a few days after.

We kept him out of school the week after, to give him time to rest and heal and to keep him away from other sick children as much as possible.

Bring along snacks and drinks, as well as diversions like iPad, video games, coloring pads & books etc.

Different doctors have different protocols for pre-medications etc. My son sees Dr. L. PM me if you want to discuss any specific details about the IVIG process itself or if you have any questions.

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Adding to all the great advise above, Liquids!! YES LOTS Take favorite play videos, games, etc. Its a long day.

 

Bendryl can also help the stomach, during the infusion time. And you can repeat it at bedtime again if needed. And it can help if your child gets congested during the

infusion ( sometimes they have to slow the rate of the infusion time down, as fluid can build up in the lungs. Just slow the rate of the infusion down).

I would say have a good meal before the start of the infusion and continue to have good foods on hand

to snack on.

I also like elytrolyte water, because seems like minerals get depleted during infusions. Seems like this helps my son out a lot.

Motrin with food at the start of the infusion, and would advise it around the clock for several days. Common side effects are headaches & stomach aches.

 

IF there seems to be some more issues going on, Activated Charcoal caps with Magnesium citrate caps ~ at bedtime away from all other medicines at least 2 hrs away.

This will asborb any serious die off issue.

 

Wishing good thoughts, all will go well.

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Lots of liquids. At the end of IVIG number two, Solumedrol was given iv push and that made a huge difference post IVIG. After number one in May 2011, DS was very sick with horrible headache and vomiting. After number two in Nov 2012, he had a headache easily controlled with Motrin. Where are you having IVIG?

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I think most of my suggestions have been covered already on here. One thing that was really good to get my daughter psyched up for the IVIG...there is a youtube video by a little girl named Sera, three months post-ivig where she talks about it making her better. I had my daughter watch this (though I stopped it before the end where the screen lists a lot of symptoms, some of which my DD doesn't have -- I didn't want her to start fixating on other things that might crop up other than what she already had!). It really gave her confidence in the medicine and gave her the courage to overcome fears about the process and aftermath. Good luck!

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nickelmama, please forgive my ignorance, but is Solumedrol a drug? What is an iv push? We are trying to make a decision about IVIG and my daughter is terrified of the process and side effects. Anything to ease the process would be considered. Thanks.

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Lots of liquids. At the end of IVIG number two, Solumedrol was given iv push and that made a huge difference post IVIG. After number one in May 2011, DS was very sick with horrible headache and vomiting. After number two in Nov 2012, he had a headache easily controlled with Motrin. Where are you having IVIG?

Just completed through Dr K in Chicago. She did well physically with the treatment (today is the first morning after the 2nd day)

Mentally it was hard on her. She is a fearfull eater, no foods we can mix abx in at this point and wont take pills. Hoping for a positive reaction to the treatment to get her willing to take supplements and abx

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I think most of my suggestions have been covered already on here. One thing that was really good to get my daughter psyched up for the IVIG...there is a youtube video by a little girl named Sera, three months post-ivig where she talks about it making her better. I had my daughter watch this (though I stopped it before the end where the screen lists a lot of symptoms, some of which my DD doesn't have -- I didn't want her to start fixating on other things that might crop up other than what she already had!). It really gave her confidence in the medicine and gave her the courage to overcome fears about the process and aftermath. Good luck!

 

Didn't edit this post, it looked like my comment was going to be just added to your...new to this and figuring it out.

But, thanks for the you tube video I will check it out.

Edited by JoshuaD
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Hydrate, hydrate, hydrate. My son starts drinking a lot of water 1 week prior and I start dosing Ibuprofen 600mg every six hours the day before, the days during the treatment and for 2 days after. Also, keep up with hydration during treatment and for 1 week after.

 

Get a cup with a straw (ours is 24 oz) - kids seem to drink more water from a straw.

 

 

She did great! She does drink more from straw... we also lucked out with a straw that whistles when she does a big drink and helps her want to do it.

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Thanks for all the posts. She did really well Post IVIG. The second day she did get a headache for about 8 hours and vomited, but it wasn't a horrible headache and the upset tummy came and went quickly. Now we wait for positive change, after 1 week we have stayed the same. She was low energy and irritable the first two days, then bounced back to her baseline pandas self.

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For mentally preparing - there is also a free IVIG play therapy kit here http://www.immunedisease.com/help-and-support/baxter-resources/therapeutic-play-kit.html

 

We got it for my 5 1/2 year old son who's going for his first IVIG next week with Dr. B. He loved it - it has all the pieces, and he has slept with his bear every night since he's gotten it. (He named him "Shivy Shiv" - no clue why!)

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