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For those doing monthly IVIG


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Hi there,

 

If you are doing monthly treatments of IVIG, what is the duration between treatments? We were planning to go 28 days between each infusion. This month has been really bad for DD. She had a pretty serious blip 4 days after receiving this month's infusion. She did actually recover from it, but then 4 days later she is now in another one. We are set to check back in for the next infusion in 5 days. So, DH and I are wondering if this is actually a blip or the treatment is wearing off.

 

I thought that I read that someone on here is doing the infusoins every 3 weeks. Can we get a consensus of the time between infusions here? Any thoughts from you experts on whether we should move our infusion up or stick it out until the planned date in 5 days? Things seem to be deteriorating quickly at our house.

 

Thanks!

FA

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What dose of antibiotic is your daughter on and what is her size? Our older son has had IVIG, every 7 to 8 weeks with a larger dose infusions (his third is next week). We noticed a huge change when we upped the antibiotic dose, continued daily improvement.... even the minor TICS still present are starting to resolve.

 

Our two younger children will be receiving monthly shots after initial infusion but not sure of the length in between yet. Short term, I recommend upping the antibiotic to see if it helps. Typically, we saw a huge improvement within 48 hours.

 

-Wendy

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Hi there,

 

If you are doing monthly treatments of IVIG, what is the duration between treatments? We were planning to go 28 days between each infusion. This month has been really bad for DD. She had a pretty serious blip 4 days after receiving this month's infusion. She did actually recover from it, but then 4 days later she is now in another one. We are set to check back in for the next infusion in 5 days. So, DH and I are wondering if this is actually a blip or the treatment is wearing off.

 

I thought that I read that someone on here is doing the infusoins every 3 weeks. Can we get a consensus of the time between infusions here? Any thoughts from you experts on whether we should move our infusion up or stick it out until the planned date in 5 days? Things seem to be deteriorating quickly at our house.

 

Thanks!

FA

 

fa,

please forgive this very sensitive quesiton, but, if your daughter is having these blips 4 days apart, this would make me feel the IVIG was not helping. I don't recall how many she's had yet, but what are these blips? symptoms come back, or do you mean an exacerbation? I mean is 4 days or so enough to gauge success of any modality? is it uncommon for dd to have even a few days of good? again, sorry, I'm just trying to get a handle on these treatments, I guess it seems many are seeing setbacks, it makes me kind of question this. what do you think? could you give a little more detail? thanks

 

Faith

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Hi Faith,

 

That is exactly how DH feels. We have done a total of 4 IVIGs. 2 this summer and 2 this fall. The ones this summer brought our daughter back to us. But the results only lasted for 30 days. When we did the one in November, (this was after PEX failed us) we have very good results as well. In November, we were starting at less than 0 because PEX took us down so low. The treatment we did in Dec helped as well. But then DH got sick and DD had an exacerbation that lasted 9 days. We didn't know what ot expect: would it clear up on its own or would we have to tough it out until the next treatment. But her body did heal. But then, whammo - she failed again.

 

Since I wrote this post this morning, it seems she is not quite as bad off as she was yesterday. Friday wasn't great, Sat was horrible and today is like Friday. So it is really hard to tell if this is another blip or if the treatment has run its course.

 

I do still believe that IVIG is helpful. I think this has just been a very unfortunate month.

 

DD weighs 47 lbs and is on 6ml of azith. The box says 200 mg per 5ml. So a bit more than 200 mg/day. Should I up this?

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Could I ask this? do you think your dd would be having this same course of symptomolgoy had you NOT had these IVIG's? In other words, was the 30 days of good you had after the first one absolutely a good enough run that you know you could not have had otherwise? were there some setbacks there too? don't know if I'm conveying this right, but hope you get my meaning.

 

Faith

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Faith: If you speak with a really good immunologist about a child who has a taxed immune system and potentially an overwhelming bacteria they will tell you its a saw tooth recovery. You basically have to burn the 'bug' out by the IVIG (donor antibiotics) and Antibiotics. Once the child is symptomless for a period of time further IVIG treatments may be needed support their immune system until it 'fully' recovers and supports itself.

 

 

Could I ask this? do you think your dd would be having this same course of symptomolgoy had you NOT had these IVIG's? In other words, was the 30 days of good you had after the first one absolutely a good enough run that you know you could not have had otherwise? were there some setbacks there too? don't know if I'm conveying this right, but hope you get my meaning.

 

Faith

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FallingApart.... I would definitely try upping it to 500 m.g. per day and load up on probiotics. Currently, I am giving our son Pearls IC: one in morning, one in afternoon, Saccharomyces Boulardii in the evening (5 billion). I'll be talking with a nutritionist in the next couple of weeks that recommends even higher dose Probiotics than we are currently giving.

 

Try higher antibiotic for 10 days. If you see continued improvement without regressions I'd ask for the higher dose from your Dr. until your child is symptomless. Keep up with the monthly IVIG as it will work. It sounds like your daughter's Dr. is doing all the right things. Don't let anything deter you from the current treatment until PANDAS is a distant memory.

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UPDATE

 

We ended up moving our IVIG up by 3 days. Today we are on day 2 of our 2 day dose. One of our blood tests came back and it shows an elevated number. I believe it was the ASO titer. I'm not positive on which test it was because some are sent out. But at least one number is elevated at least for DD. Our ped said the number isn't necc elevated according to published literature, but for DDs trends, it is at least 20 points higher than it should be.

 

I am wuite happy to know that there is something scientific to why she had such a bad month. It is so helpful to know that we are not just imagining this or are weak parents.

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UPDATE

 

We ended up moving our IVIG up by 3 days. Today we are on day 2 of our 2 day dose. One of our blood tests came back and it shows an elevated number. I believe it was the ASO titer. I'm not positive on which test it was because some are sent out. But at least one number is elevated at least for DD. Our ped said the number isn't necc elevated according to published literature, but for DDs trends, it is at least 20 points higher than it should be.

 

I am wuite happy to know that there is something scientific to why she had such a bad month. It is so helpful to know that we are not just imagining this or are weak parents.

 

 

thanks for giving that update. altho, for dummies like me... :) , could you clarify what that means?

does this mean you had bloodwork to see what was going on or is that routine in between these ivig's?

so if the ASO titer is up somewhat, does that indicate that her behavioral setbacks may have been due to that and that there may hve been exposure? why would that go up if she is in midst of these treatments? did the ped think that was usual?.....sorry, you may not really know, I'm just curious.

 

Is she doing better now?

 

Faithh

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We test the ASO titers and Anti DNASE B numbers each month. If things are going hunky dory and these really are just a preventetive treatment, I would imagine those numbers should stay stable. But this month was pretty rough for us so to see that one of the numbers was elevated makes me pretty happy. It shows that her body has an infection in it. Maybe someone else can explain it in more detail.

 

I fully believe that her behavior was directly related to this infection. Since we are still in the hospital, I can't truly assess her behavior yet, but will keep people updated.

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