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has IVIG worked for you


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My 8 year old daughter is scheduled for IVIG tomorrow, I am a little nervous. She has 3 doses ordered, each 1 month apart. I would like to know how others have responded to the IVIG. How long have improvements lasted. how did treatment go, how were side effects, how soon you saw results?? any info appreciated

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My 8 year old daughter is scheduled for IVIG tomorrow, I am a little nervous. She has 3 doses ordered, each 1 month apart. I would like to know how others have responded to the IVIG. How long have improvements lasted. how did treatment go, how were side effects, how soon you saw results?? any info appreciated

 

 

hi! we r doing two days straight of the high dose. they say its better to do it like that...

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Hi,if you have emla cream,put it on the site and wait 1/2 hour to a hour before IV stick(Or when you draw blood)and it helps so you don't feel it.(It is Lidocaine cream)Our Pediatrician ordered it.Also with the IVIG running you also want to piggyback IV fluid.(Do you know the name of IVIG to be used?And is it with Dr.B or K?)Also before treatment started we give our daughter Tylenol and Benadryl.(She uses the meltaways)Then 4 hours later give Tylenol and Benadryl again.Then that night before bed give Tylenol and Benadryl again.We took ice pops and jello for our daughter during IVIG because sometimes it is hard trying to get her to drink fluids.They will monitor your daughters blood pressure.I will say a prayer for you and your daughter.(My daughter is 7 and I know how it feels to be anxious about whether you are doing the right thing or not)

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What dose is she getting and is it with one of the doctors talked about on this site?

 

My dd had IVIG 5 weeks ago and has improved tremendously. She had 1.5g/kg with Dr. B. They prepped her with benedryl, Motrin, and Prednisone. They also gave her IV fluids at the same time as the IVIG. It went perfectly. No probelms until a few days after the IVIG with slight headaches that Advil took care of.

 

Dd's main symptoms had been (for almost 4 years) the asking of reassurance questions. That symptom just stopped sometime shortly after the IVIG. (every few days she may ask one or two questions now, before it was almost constant) She still has physical repeating symptoms and that shuffle walk (still a repeating issue really) similar to Sammy Maloney. We're hoping the next treatment will hasten the rest of her recovery.

 

Other things that are better are general anxiety, irritability, separation anxiety, going through doorways, bedtimes.

Angela

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Thank you all so much for your input. Infusion went well last night, so far feeling good this am. Just a waiting game to see what happens with behaviors. I had a thought this morning, that she has now created habits with these behaviors that may take time to disappear even if they no longer are actual "triggers". I am hopeful. Dr Lin (Irvine Ca) ordered a high dose of 2mg/ kg. It is to be done every 30 days x 3. We didn't do a double dose for the 1st infusion like alot of other Dr's. I am a Critical Care RN and have given IVIG to several patients- just different when its your baby :)I am comfortable with Dr Lin's regimen, and he as treated several PANDAS patients, when asked, he said he has seen a great increase over the last year, I hope it is because the word is getting out and these kids are getting treatment rather than being labeled mentally ill, rather than an actual increase in cases. I am surely on a mission to save others from a misdiagnosis. Will update as we see the effects of IVIG :)

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Thank you all so much for your input. Infusion went well last night, so far feeling good this am. Just a waiting game to see what happens with behaviors. I had a thought this morning, that she has now created habits with these behaviors that may take time to disappear even if they no longer are actual "triggers". I am hopeful. Dr Lin (Irvine Ca) ordered a high dose of 2mg/ kg. It is to be done every 30 days x 3. We didn't do a double dose for the 1st infusion like alot of other Dr's. I am a Critical Care RN and have given IVIG to several patients- just different when its your baby :)I am comfortable with Dr Lin's regimen, and he as treated several PANDAS patients, when asked, he said he has seen a great increase over the last year, I hope it is because the word is getting out and these kids are getting treatment rather than being labeled mentally ill, rather than an actual increase in cases. I am surely on a mission to save others from a misdiagnosis. Will update as we see the effects of IVIG :)

I assume you mean 2grams/kg rather than mg, right? (made that same mistake once myself) And what do you mean by every 30 days times 3? (3 days in a row?)

Angela

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Thank you all so much for your input. Infusion went well last night, so far feeling good this am. Just a waiting game to see what happens with behaviors. I had a thought this morning, that she has now created habits with these behaviors that may take time to disappear even if they no longer are actual "triggers". I am hopeful. Dr Lin (Irvine Ca) ordered a high dose of 2mg/ kg. It is to be done every 30 days x 3. We didn't do a double dose for the 1st infusion like alot of other Dr's. I am a Critical Care RN and have given IVIG to several patients- just different when its your baby :)I am comfortable with Dr Lin's regimen, and he as treated several PANDAS patients, when asked, he said he has seen a great increase over the last year, I hope it is because the word is getting out and these kids are getting treatment rather than being labeled mentally ill, rather than an actual increase in cases. I am surely on a mission to save others from a misdiagnosis. Will update as we see the effects of IVIG :)

I assume you mean 2grams/kg rather than mg, right? (made that same mistake once myself) And what do you mean by every 30 days times 3? (3 days in a row?)

Angela

 

 

oops, you're right, I meant 2G/kg. We are giving it every 30 days (once a month) for 3 months. 2 treatments left.

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Thank you all so much for your input. Infusion went well last night, so far feeling good this am. Just a waiting game to see what happens with behaviors. I had a thought this morning, that she has now created habits with these behaviors that may take time to disappear even if they no longer are actual "triggers". I am hopeful. Dr Lin (Irvine Ca) ordered a high dose of 2mg/ kg. It is to be done every 30 days x 3. We didn't do a double dose for the 1st infusion like alot of other Dr's. I am a Critical Care RN and have given IVIG to several patients- just different when its your baby :)I am comfortable with Dr Lin's regimen, and he as treated several PANDAS patients, when asked, he said he has seen a great increase over the last year, I hope it is because the word is getting out and these kids are getting treatment rather than being labeled mentally ill, rather than an actual increase in cases. I am surely on a mission to save others from a misdiagnosis. Will update as we see the effects of IVIG :)

I assume you mean 2grams/kg rather than mg, right? (made that same mistake once myself) And what do you mean by every 30 days times 3? (3 days in a row?)

Angela

 

 

oops, you're right, I meant 2G/kg. We are giving it every 30 days (once a month) for 3 months. 2 treatments left.

Sounds like an aggressive treatment that hopefully will help immensely. I do know that the reason that Dr's B and K don't do IVIG's at 30 day intervals is to give the immune system time to settle down in between. But I also know that various things have worked for various kids. Hopefully your regiment will be just right for your son. It's all an experiment of sorts, to some degree. Best of luck to you. Keep us posted.

Angela

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We had IVIG Thursday and Friday. my daughter weighs 160 and she got 60 grams each day, so a bit more than 1.5. We did 40 mg of prednisone, Benedryl, and Tylenol, but didn't hydrate well enough (I guess) as she got a migraine for all of Saturday, as well as a fever. I kept telling her not to worry, it was the IVIG kicking the PANDAS out of her brain.

 

But today (day two after) she had only a mild headache...........but guess what else?? :D :D :D She combed her hair today and it actually looked good! She went to a party where she knew hardly anyone, and had a good time, and she had a planned intervention with a friend who has been unkind to the rest of the group she hangs out with. She was direct, cool, not at all anxious or flustered and won the argument. Is it working? Heck yaaaaaa!!!!!! (doing the happy dance!)

 

My son should be getting his next week. I can't wait to see the new him too!

 

Nancy

 

 

Well Hayden was doing really well until 2 pm yesterday, then she got the headache, with some nausea (vomited x 2) Massaging her head where it hurt REALLY helped and she fell asleep until this morning. Woke up, feeling good so far and seems to be VERY HAPPY, mornings are usually really hard on her. I am cautiously optimistic :) can't wait to see what the rest of the day brings.

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