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confused again!


danddd

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so, dd9 has only had one ivig, which helped a lot.....for a couple months. unfortunately, at 9 weeks, her fear of halloween exploded, and at the same time lots of strep in her class. since then she has been slowly going downhill again. she is still better than before, but the bad stuff is seeping back in. her fears are bad, she is paranoid sometimes, getting meaner, bit violent. anyone else see the positive effects of an ivig dissapear? some docs are doing multiple high dose right? maybe one high dose just isnt enough for her?

 

thanks

dan

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On our 1st IVIG, DS14 had about one or two good weeks, then the effects went away. Had a second one two weeks ago and everything became spectacularly worse. Slowly coming back again with many saw toothed effects. My Dr thinks that 3 to 4 is a likely number to start seeing results. Of course, DS has had this since 5 and is now 14, so may need quite a bit more than younger, shorter duration patients.

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I think you'll hear varied opinions on this and unfortunately, not enough research has been done to give any data one way or the other. There have been kids on the forum who get and stay will without IVIG, those who do well after only one, some who seem to benefit from multiple treatments. In the end, you're going to have to follow your gut and pocketbook on this one.

 

My only personal advice is to make sure you have checked for strep plus any chronic infections like lyme (thru a specialty lab, not standard commercial labs), mycoplasma, candida (believe this can be screened with a blood test but not certain)..etc.

It's like making sure you pave the front walkway of your house before installing a white carpet in your entrance way. If there's still mud in the front yard, you're not going to be able to enjoy the clean carpet for very long.

 

You'll be in my thoughts.

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Great analogy LLM!

 

Dan,

is your dd on full-strength abs? I think that is important too.

 

My dd has had 2 IVIG's so far. One in Aug. just before 4th grade, one in May of 4th grade as we saw a clear increase in PANDAS symptoms/baseline change after a 1 day fever in Feb. of 4th grade. Now dd is in 5th grade. Overall doing well, but some symptoms remain. I'd say she's at 90-95%, overall good, but not perfect.

 

But, it does seem like some kids definitely need more than 1 IVIG, esp. the older kids.

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EAMom, glad to hear you had so much success with just the 2 ivig's. my dd had her first ivig in aug., before starting 4th grade too. she is not on full strength abx, only prophyl. augmentin. full augmentin destroyed her stomach last year, even with lots of probiotics. maybe a switch of abx. could help? what abx is your dd on, and how much for how long? thanks

 

 

 

Great analogy LLM!

 

Dan,

is your dd on full-strength abs? I think that is important too.

 

My dd has had 2 IVIG's so far. One in Aug. just before 4th grade, one in May of 4th grade as we saw a clear increase in PANDAS symptoms/baseline change after a 1 day fever in Feb. of 4th grade. Now dd is in 5th grade. Overall doing well, but some symptoms remain. I'd say she's at 90-95%, overall good, but not perfect.

 

But, it does seem like some kids definitely need more than 1 IVIG, esp. the older kids.

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My dd is normally on 250mg/day Azith. She's about 64 pounds.

 

We did do a trial of 1000mg Aug. XR for 1 mo. to see if that would get us closer to 100%. I'm not sure it was any better for us vs. Azith.

 

Now were doing a trial of 500mg/day Azith. (again to see if we could get closer to 100%).

 

I should add that dd was initially doing pretty well b-4 IVIG (so she wasn't at her worst b-4 IVIG). She had huge improvement with Azith. /advil/ and low dose prozac at the end of 2nd grade. (In 2nd grade her PANDAS/anorexia was so bad that we had to hospitalize her for a week due to malnutrition/acute food refusal.) However, throughout 3rd grade, we were noticing that her "baseline" was changing (we watched her for a year) even with continued full-strength abs .... also we noticed she would exacerbate with non-strep illnesses (H1N1, fifth's dz) as well as when family members got strep...which is why we proceeded with IVIG.

Edited by EAMom
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