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IVIG has totally triggered more symptoms


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Oh my gosh. I know we did IVIG because my son had PANDAS again. But he was doing so much better for two weeks before IVIG. Now we're back into it full force. I sure hope this goes away soon. He was bad from September through early December. Good from early December until February 10. Started improving mid March but we had the IVIG scheduled for the 22nd so we went ahead with it. Now he's completely PANDAS again. THIS SUCKS.

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Oh my gosh. I know we did IVIG because my son had PANDAS again. But he was doing so much better for two weeks before IVIG. Now we're back into it full force. I sure hope this goes away soon. He was bad from September through early December. Good from early December until February 10. Started improving mid March but we had the IVIG scheduled for the 22nd so we went ahead with it. Now he's completely PANDAS again. THIS SUCKS.

So sorry, but it will get better again. It feels like a rollercoaster and someone needs to stop the ride. Hopefully tomorrow will be better and the next day better yet, Stay strong!!

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It will get better I promise....... We've done 3 IVIGs and the first week is always rough.

 

-Wendy

 

Oh my gosh. I know we did IVIG because my son had PANDAS again. But he was doing so much better for two weeks before IVIG. Now we're back into it full force. I sure hope this goes away soon. He was bad from September through early December. Good from early December until February 10. Started improving mid March but we had the IVIG scheduled for the 22nd so we went ahead with it. Now he's completely PANDAS again. THIS SUCKS.
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I like to think of it like chemo...when you see the hair fall out you know it is working. It is targeting antibodies that were hiding out in the crevices of small vessels. When you see the behavior you know it is doing it's job. My son is two weeks out his second dose and I have been seeing stuff for the last three days. It is not like an infection where once you get control with antibiotics every day is better than the day befoe. It is sawtooth. Hang in there.

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Oh my gosh. I know we did IVIG because my son had PANDAS again. But he was doing so much better for two weeks before IVIG. Now we're back into it full force. I sure hope this goes away soon. He was bad from September through early December. Good from early December until February 10. Started improving mid March but we had the IVIG scheduled for the 22nd so we went ahead with it. Now he's completely PANDAS again. THIS SUCKS.

Oh, dear! That is so hard. In some ways, I think the backslides are harder than the initial symptoms. The feeling of dread, because now you know how bad it can get...I'm so sorry. Hope this is a short downturn with a quick and amazing upswing just around a very near corner.

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bubbasmom, hi,

 

sorry, just to understand, is this the first and only ivig, or you had it before and he was better? why did you go with another one if things were getting good? are you doing monthly or this was the only one? sorry things got a little bad again, I still don't understand all this with these treatments.. would you mind refreshing me on what symptoms he had and what is happening right now?

 

thanks

Faith

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Faith, my son first had PANDAS Oct 16 until Dec 10 2007. That was controlled with antibiotics alone. We thought we'd been through it all back then until Sept 10 2009. This time the symptoms were so much worse and so different. In 2007 it was fits of rage. In 2009 the fits of rage went a step further into threats against himself. And it was more than threats, I had to get very physical with him to protect him, after an hour or two it would go away. We saw Dr. K in October, he was the first to recommend IVIG, I had never heard of it. (Meanwhile this time we had him on varied antibiotics, Risperidal for the threats, Zoloft for these days of depression he'd slip into, and Concerta for what we refer to as 'brain farts'). So 6 weeks after IVIG we finally saw vast improvement. He got back on track in school, things got very good. He got off the Risperidal and life was good. Until February 10. If you look at the grade books from school you see in Jan when the semester started all A's then a very very definite line at mid February C's D's F's. Complaints from teachers and friends.

But the rage is the symptom we worry most about. But severe OCD, sleep disorder, lack of concentration to the point that if he's looking at something he can't even answer a simple yes or no. Slight tics early on not so much now - knuckle popping the worst.

Anyway, he had a really good stretch of maybe a couple weeks, but we had already started the IVIG scheduling process, so we decided 'it wouldn't hurt' and might make sure in case something was lingering.

Well, my goodness, I feel like I'm paying the price.

Tonight he text me 'I just want to be normal'. That just absolutely broke my heart!

bubbasmom, hi,

 

sorry, just to understand, is this the first and only ivig, or you had it before and he was better? why did you go with another one if things were getting good? are you doing monthly or this was the only one? sorry things got a little bad again, I still don't understand all this with these treatments.. would you mind refreshing me on what symptoms he had and what is happening right now?

 

thanks

Faith

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Sounds like your son is older than mine, but my 5 year old also told me one night after a very violent rage, "I just want to be a normal boy". I almost died! Also, one night he was laying in bed and told me that maybe he would be better off in heaven b/c he always gets sick on earth. It's so awful for a 5 year old to have these thoughts and I can't imagine having an older child who could actually ACT on a thought like that! Hang in there. I think in my IVIG post you said that he is doing better?

 

Stephanie

 

Faith, my son first had PANDAS Oct 16 until Dec 10 2007. That was controlled with antibiotics alone. We thought we'd been through it all back then until Sept 10 2009. This time the symptoms were so much worse and so different. In 2007 it was fits of rage. In 2009 the fits of rage went a step further into threats against himself. And it was more than threats, I had to get very physical with him to protect him, after an hour or two it would go away. We saw Dr. K in October, he was the first to recommend IVIG, I had never heard of it. (Meanwhile this time we had him on varied antibiotics, Risperidal for the threats, Zoloft for these days of depression he'd slip into, and Concerta for what we refer to as 'brain farts'). So 6 weeks after IVIG we finally saw vast improvement. He got back on track in school, things got very good. He got off the Risperidal and life was good. Until February 10. If you look at the grade books from school you see in Jan when the semester started all A's then a very very definite line at mid February C's D's F's. Complaints from teachers and friends.

But the rage is the symptom we worry most about. But severe OCD, sleep disorder, lack of concentration to the point that if he's looking at something he can't even answer a simple yes or no. Slight tics early on not so much now - knuckle popping the worst.

Anyway, he had a really good stretch of maybe a couple weeks, but we had already started the IVIG scheduling process, so we decided 'it wouldn't hurt' and might make sure in case something was lingering.

Well, my goodness, I feel like I'm paying the price.

Tonight he text me 'I just want to be normal'. That just absolutely broke my heart!

bubbasmom, hi,

 

sorry, just to understand, is this the first and only ivig, or you had it before and he was better? why did you go with another one if things were getting good? are you doing monthly or this was the only one? sorry things got a little bad again, I still don't understand all this with these treatments.. would you mind refreshing me on what symptoms he had and what is happening right now?

 

thanks

Faith

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bubbasmom,

 

I will pray that you have good news to report in the days to come. Hugs to you and your son. Tell him that his struggles might very well be helping many others and the willingness of your family to share his experience is SO appreciated.

 

Mommd,

 

I'm assuming that you mean that IVIG will clear lodged immune complexes? Can you give any further info on how IVIG accomplishes this and what the likelyhood is that more won't form?

 

It is targeting antibodies that were hiding out in the crevices of small vessels.
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I wish it was easier, but after a year of monthly IVIG's this has always been the normal pattern for my son. Especially tough after the first 3 days, somewhat related to receiving IV steriod/benadryl, prior to infusions.. My guy usually doesn't begin to improve until the second week. Hang in there...can't tell you how many times I felt like giving up, believe me...it's monthly. Seems like the rollercoaster will never end....but he is slowly improving, unlike most of the kids on here....everything is slow for us.

Best wishes to you!

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bubbasmom,

thanks,

so basically he did do well enough after a time on the first ivig, but there were some lingering rage, so is that why you were going to do more? just trying to see why Dr. K. went for more IVIG for your boy when I thought he was of the school that monthly was not so beneficial. was the dose the 1.5 over two days or something else?

 

hopefully, it will follow the same pattern, and things will calm as before?

 

thanks for sharing this.

 

Faith

Edited by faith
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My son had 2nd IVIG with Dr. K. 2 weeks ago. Saw big improvement after 10 days, now nothing, if not a little worse. He wants to do 3rd one this time as soon as improvement stops, but probably not before 6 weeks. After first one (5 months ago), we saw improvement for 2 months, then nothing. He also has anger issues, very irritable, ADHD, regression in social age, separation anxiety severe (I can't leave him at all), plus the OCD cantamination fears. Hoping to see some more improvement in weeks ahead.

 

 

bubbasmom,

thanks,

so basically he did do well enough after a time on the first ivig, but there were some lingering rage, so is that why you were going to do more? just trying to see why Dr. K. went for more IVIG for your boy when I thought he was of the school that monthly was not so beneficial. was the dose the 1.5 over two days or something else?

 

hopefully, it will follow the same pattern, and things will calm as before?

 

thanks for sharing this.

 

Faith

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He had anger, irritability, severe OCD, Adhd, regression in social age, regression in hand writing all before IVIG. OCD came on suddenly a year before IVIG. Anger was added a few months before IVIG (could be hormonal as he turned 13). Anger, I'm told, is a form of depression (and who wouldn't be after what he's been through - because of OCD he cannot be around around friends and he is very social). None of these things got worse with either IVIG. With first, he got better for 2 months, then began to get worse. This time he is not getting worse. It's just he had a few good days with OCD progress, but now last few days we're seeing no progress. Not sure what you mean by immune deficiencies. He has had asthma since a baby and mutiple allergies.

 

 

Nita,

he had all this 'before' the ivig? did any of it get worse after?

 

is your boy one with immune deficiencies, or no?

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