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IVIG - Process before, during and after


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Our son, who is 8, received his score back from Dr. Cunningham last month. He had a high CamKinaseII (194) and high antiDopamine 1 of 4000. He is due to talk to an immunologist here in NS in October. We have contacted dr. B to give us a phone consult of what we should be doing. We have ordered a lyme test through IGenex and also have a lot of blood work recommended by Dr. Bouboulis. Our son has an asd diagnosis as well adhd, ocd, tourette's diagnosis - u name it - he has it. I am wondering if all of his symptoms have been stemming from infections. He has low neutrophils and is chronically neutropenic. He is now on 250mg of azithromycin every other day. I believe this problem started for him when he was very little (shortly before his 1st birthday). He had chronic ear infections and was a very cranky baby.

 

Dr. B recommended high-dose ivig for our child over two days. I wonder if drs perform a one day treatment or a treatment that is not high enough - what can happen? I would think it might make things worse...Our child is very high functioning and has lots of speech. His problems are mainly that he can not self-regulate. He is like a spin top out of control. He really cannot settle himself down to think through his choices and he acts impulsively and aggressively as if he is in constant 'fight or flight' mode. Can anyone help me to let me know if anyone's child has recovered on one dose? Has anyone's child recovered from an autism diagnosis when it was really the underlying infections and PANDAS that was causing the problems? Thank you.

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Dr. B recommended high-dose ivig for our child over two days. I wonder if drs perform a one day treatment or a treatment that is not high enough - what can happen? I would think it might make things worse...Our child is very high functioning and has lots of speech. His problems are mainly that he can not self-regulate. He is like a spin top out of control. He really cannot settle himself down to think through his choices and he acts impulsively and aggressively as if he is in constant 'fight or flight' mode. Can anyone help me to let me know if anyone's child has recovered on one dose? Has anyone's child recovered from an autism diagnosis when it was really the underlying infections and PANDAS that was causing the problems? Thank you.

 

Our dd had IVIG w/Dr. K 6 weeks ago, it was over 2 days as well. I have read on this site about one mom who did it in 1 day with her child and it was horrible. Wherever/however you get it make sure that you leave with an Rx for steroids in case the headache is massive and won't go away. My dd had the headache and I was very, very grateful for the steroids, without them we would have been in the ER. I like the 2 days and would not try 1 myself. My dd also had the chronic ear infections as well and was very cranky. I do believe many people have misdiagnosis of many other things including Autism and it's really PANDAS, and I think ruling out Lyme is a great idea as well - good for you! I need to look up how to do the IGenex thing as our Dr will not just test for whatever we want. Is there something special about the IGenex test? I read it twice this morning but don't know what it is, is it more thorough?

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We had a pretty dramatic decrease in symptoms and have enjoyed a one-year remission from the major symptoms (though have still gotten repeated strep and deal with mostly exhaustion.) We did IVIG w/Dr K in Chicago and did the high 2-day dose and prophylactic abx afterward (and will continue at least until the end of this year.)

 

My best advice is to take your own meds with you when you go- dye free benadryl and motrin, as they may not have these at the IVIG center. You can ask ahead of time if it is okay to dose him before you get there. Keeping him hydrated well in advance (at least a week) of the IVIG and thereafter is helpful with the side effects. We actually did end up with the aseptic meningitis but it was easily treated in the ER with IV fluids under the direction of Dr K via phone conference with the ER docs.

 

It can cause immediate upset tummy as well, so you probably want to take some wipes, a change of clothing, and a bowl or pail with you while riding in the car (my daughter had some nausea during IVIG but did not vomit- they decreased the flow and she was fine.) We had vomiting late at night after the second dose, but the car ride did make her queasy.

 

There is a whole kit you can order online via Baxter that has a pretend IVIG with a little teddy bear, etc. We visited a bookstore beforehand and stocked up on a few simple sticker books and things so we could more easily pass the time. The center we used had DVD players too, which was nice. My daughter napped through most of it. The hardest part was getting the IV in (because of fear) but then it was a breeze. The second day was much easier because she knew what to expect.

 

You can search my name here and see our history and read the blog (in my signature) for more info on our one-year update post-IVIG if you like. I'm happy to answer any questions too.

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We had a pretty dramatic decrease in symptoms and have enjoyed a one-year remission from the major symptoms (though have still gotten repeated strep and deal with mostly exhaustion.) We did IVIG w/Dr K in Chicago and did the high 2-day dose and prophylactic abx afterward (and will continue at least until the end of this year.)

 

My best advice is to take your own meds with you when you go- dye free benadryl and motrin, as they may not have these at the IVIG center. You can ask ahead of time if it is okay to dose him before you get there. Keeping him hydrated well in advance (at least a week) of the IVIG and thereafter is helpful with the side effects. We actually did end up with the aseptic meningitis but it was easily treated in the ER with IV fluids under the direction of Dr K via phone conference with the ER docs.

 

It can cause immediate upset tummy as well, so you probably want to take some wipes, a change of clothing, and a bowl or pail with you while riding in the car (my daughter had some nausea during IVIG but did not vomit- they decreased the flow and she was fine.) We had vomiting late at night after the second dose, but the car ride did make her queasy.

 

There is a whole kit you can order online via Baxter that has a pretend IVIG with a little teddy bear, etc. We visited a bookstore beforehand and stocked up on a few simple sticker books and things so we could more easily pass the time. The center we used had DVD players too, which was nice. My daughter napped through most of it. The hardest part was getting the IV in (because of fear) but then it was a breeze. The second day was much easier because she knew what to expect.

 

You can search my name here and see our history and read the blog (in my signature) for more info on our one-year update post-IVIG if you like. I'm happy to answer any questions too.

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Dr. B sent a list of required blood work to be done before we can get a phone consult with him and one of the tests is the lyme test from IGenex lab. We sent for it and are now waiting to do the list of tests including the igenex lyme test at www.igenex.com . I have heard a lot about co-infections with our kids. Some being mycroplasm pneumonia. Our family dr thought we were out of our mind - until we gave him the results of the Cunningham test! Then he had the nerve to say he thought it was pandas that our son had a few years ago! I could have knocked it over the head when he said that one! That is why we are hiring Dr. Bouboulis to be a consultant and write a letter for what he would consider as a treatment plan for our child. I think they are going to try to pull a one-day low dose on us and I want to be ready with evidence to show that will not do for our son! You have to advocate for your child because no one else will. Very sad but true. Good luck!

 

Dr. B recommended high-dose ivig for our child over two days. I wonder if drs perform a one day treatment or a treatment that is not high enough - what can happen? I would think it might make things worse...Our child is very high functioning and has lots of speech. His problems are mainly that he can not self-regulate. He is like a spin top out of control. He really cannot settle himself down to think through his choices and he acts impulsively and aggressively as if he is in constant 'fight or flight' mode. Can anyone help me to let me know if anyone's child has recovered on one dose? Has anyone's child recovered from an autism diagnosis when it was really the underlying infections and PANDAS that was causing the problems? Thank you.

 

 

Our dd had IVIG w/Dr. K 6 weeks ago, it was over 2 days as well. I have read on this site about one mom who did it in 1 day with her child and it was horrible. Wherever/however you get it make sure that you leave with an Rx for steroids in case the headache is massive and won't go away. My dd had the headache and I was very, very grateful for the steroids, without them we would have been in the ER. I like the 2 days and would not try 1 myself. My dd also had the chronic ear infections as well and was very cranky. I do believe many people have misdiagnosis of many other things including Autism and it's really PANDAS, and I think ruling out Lyme is a great idea as well - good for you! I need to look up how to do the IGenex thing as our Dr will not just test for whatever we want. Is there something special about the IGenex test? I read it twice this morning but don't know what it is, is it more thorough?

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just wanted to say that, regarding doing the high dose IVIG treatment over 2 days instead of a single day, part of the reason is that the IVIG is a protein that drastically expands the blood volume. This is one of the reasons its important to do vitals signs and check blood pressure throughout the infusion. To use the recommended dose which is typically 1.5 grams per kg, that's alot of added fluid volume directly into our child's bloodstream and it wouldn't be safe to do it all in a single day. hope that helps a little.

amy

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just wanted to say that, regarding doing the high dose IVIG treatment over 2 days instead of a single day, part of the reason is that the IVIG is a protein that drastically expands the blood volume. This is one of the reasons its important to do vitals signs and check blood pressure throughout the infusion. To use the recommended dose which is typically 1.5 grams per kg, that's alot of added fluid volume directly into our child's bloodstream and it wouldn't be safe to do it all in a single day. hope that helps a little.

amy

My daughter gets 1.5g/kg every 4 weeks. We started with 2 days, but have done the last 2 in 1 day. She handles it well and its so much nicer to get it over in one day.

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just wanted to say that, regarding doing the high dose IVIG treatment over 2 days instead of a single day, part of the reason is that the IVIG is a protein that drastically expands the blood volume. This is one of the reasons its important to do vitals signs and check blood pressure throughout the infusion. To use the recommended dose which is typically 1.5 grams per kg, that's alot of added fluid volume directly into our child's bloodstream and it wouldn't be safe to do it all in a single day. hope that helps a little.

amy

I agree. Also, spreading it out lessons the chance of side effects plus lots of fluid (hydration) before during and after. Saline drip along with IVIG will help. Children typically handle it better (less side effects) than adults. That is why I suppose some children can do it in one day. I have heard of spreading it out as much as five days for 2gm/per kilo. To completely eliminate side effects. Slowing it down also lessons side effects. i.e. take total of 16 hours vs 8 hours just as an example. But some children may want to deal with minor side effects and not drag it out.

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My boys (4 and 7) get IVIG monthly, so we've had to figure out how to make it as easy as possible. We do it at UCLA, where they do tons of these on kids, so they've given us good advice.

 

First, they don't do 1.5 g/kg in one day in children my kids' ages there, even though it's in a hospital setting. My kids have done up to 1 g/kg in one day there and have tolerated it great, but their immunologist has said that if he ever went up to 1.5, it would have to be over 2 days.

 

My 4 year old actually handles the whole thing extremely well, doesn't even mind the initial needle stick. He actually looks forward to going because we make a big event out of it. The staff tells me it's not unusual at his age since he doesn't anticipate pain much, just waits to see how much it's going to hurt, and by the time he's assessed the pain, it's over. But he does anticipate all of the treats that go along with the whole thing.

 

However, my 7-year-old is at what they say is just about the worst age - old enough to anticipate it and get tense about it, but young enough that he has little interest in "being tough" for it. So this is what they recommend, and what we do, which helps a lot:

 

First, we do hydrate a LOT the morning of. They get to pick out great big bottles of whatever they want (as long as no dyes) from the convenience store (chocolate milk, big exotic juices or fruit waters, whatever), and then they have to drink it. This part is fun for them because the store has a million drinks to choose from, and my kids don't get to pick "anything they want" like that often, so it's a treat. While we're there, I also let them each pick out a treat that they get to open after the IV is in - again, I let them have things they don't normally get for this, and they look forward to making these choices.

 

Then once we're on the way:

1) We use Emla cream (the generic, actually), which I put on half an hour before we get there and cover with saran wrap, which numbs the skin of the area. It's a prescription you can get from any doctor; we got it from the pediatrician.

 

2) On top of that, the nurse uses lidocaine spray on the area before they do the needle stick. Ds7 calls it the "freezy spray". You can get a version of it over the counter, so in the past I've kept it in my purse just in case they haven't had it at the center.

 

Between those 2 applications, generally they can barely feel the needle stick.

 

3) Then, to help distract ds7 from anticipation while they prep the site etc., the "child life" specialist in the procedure area (whose job it is to help distract and entertain all the kids in there) always brings some sort of a visual puzzle book, like "Where's Waldo?" for him to focus on. Or once she brought one of those 3-D viewers where you look into the plastic device and get "slides" that you can click along (can't remember what they're called - Master something?). I thought that was brilliant, because he was really into it, and it completely prevented him from looking at what the nurses were doing. These moves really do occupy him, which helps a lot.

 

4) As someone else said, I always bring my own ibuprofen and benadryl. My kids happily swallow pills or chew chewables, and they hate the liquids, and the center always has the liquids, so I figure I can spare them that one piece that they don't like.

 

5) My kids like to play with legos or do crafts during the early stages - the child life specialist always has some special (simple) "kit" prepared for each of them that she knows they will like - but part way through they get sleepy, and then we put on a movie. I always order a couple of new things through Netflix each month so that they have new and entertaining "surprise movies" to get excited about. So that's another treat.

 

6) We plan ahead to do something "fun" for lunch during the procedure, like they get McDonalds Happy Meals or Lunchables or something like that. Again, they get to pick. Again, not something we normally do, so yet another treat.

 

7) Then they get to pick a prize afterwards from the UCLA prize closet. What will be in there is always a mystery, so they look forward to that. Whoever got "stuck" first, gets to pick his prize first - so that expedites the whole "who goes first" issue for us.

 

8) I push fluids throughout, and afterwards, and give ibuprofen again in the evening even if they seem to be feeling fine. In the morning I make a judgment call about whether to give it again, but only decide to do so about 1/4 or less of the time.

 

We do have the Iggie V kit from Baxter, and my kids love it. UCLA also gave us a bunch of real medical supplies (tubing, tape, etc) and fake needles (rubber) so that the kids can play-act the whole business whenever they want. They love to do procedures on Mom and Dad, show their friends how it works, do it on each other, etc. Not as much anymore now that it's more routine, but after the first IVIG, they spent a LOT of time playing with the stuff and "doing procedures" on their animals and on me, and on each other. It seemed to be an important way for them to get comfortable and defuse.

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