Prednisone used for maintaining DS Behaviors post IVIG ?

[tapiash]

I consulted with my doctor yesterday and this is how we are going to treat my son post IVIG. We had IVIG 3 weeks ago and initially we were scheduled for IVIG every 28 days. OCD and tics are pretty much non existent but we are still dealing with mood swings, irritability and language difficulties. Anyway, since DS had such great results on Prednisone, our doctor wants him to start taking them again. DS will have 20mg 2x a week. We will continue antibiotics 2x a weeks as well as 5Htt (mood stabilizer) and probiotics with yeast. Dr. said sometimes kids need maintaining after IVIG. He really sounds like he knows what he is doing but I'm not sure how I feel about this. We are scheduled for another IVIG a week from Monday and I do not know if I should keep my appointment. It is already scheduled.

 

Has anyone else on this forum used Prednisone for maintaining? I really need some feedback.

[momto2pandas]

Prednisone is certainly used for maintenance for some other autoimmune disorders, but I haven't heard of it for PANDAS maintenance(not that I'm any expert on this). Will your son be getting IVIG every month for immune deficiency/chronic infections, and if so, at what dose? Higher doses are apparently antiinflammatory, so I would think that if the dose is high enough, you probably wouldn't need prednisone maintenance. However, it seems that some people here have not had great results with lower doses of IVIG for PANDAS (half a gram or less/kg), presumably because although those doses are immune supportive and may help fight infections, they may not necessarily be anti-inflammatory. In such a case, ongoing prednisone might be useful.

 

I would think that if your son has an immune deficiency (presumably that's why you were planning IVIG every 28 days), ongoing prednisone without IVIG might not be a good idea, since long-term pred can increase susceptibility to infections (although maybe not at such a low dose, not sure about that). So if the doc wants you to do ongoing pred and ongoing IVIG, I wouldn't cancel the IVIG part if it were me.

 

If you just had your first IVIG 3 weeks ago, it seems a little early to go to low-dose antibiotics to me. All of our docs wanted full strength for at least 3 months. And when we tried going off after that, we failed within a week...so it's back to daily for us.

 

My kids had a first IVIG dose of 1.5 g/kg, followed by monthly 0.75 g/kg and daily antibiotics. That worked very well in ridding them of all symptoms, up until the last few days of each month when some anxiety and irritability would start to creep in again (mild - more annoying to me than to the kids). Both the 1.5 and the 0.75 "wore out" like this. We messed it up by trying to go off of antibiotics this past round, so are now half-way through another high dose IVIG to "re-boot" again (first half yesterday, second half Monday). However, after day one everyone is already doing great again and we're scheduled for the next in 3 weeks, so I'm debating whether or not to go ahead with the second half of the dose.

 

I mention all of this just because I'm guessing that at high enough doses of monthly IVIG, prednisone may not be necessary once your son stabilizes. Based on posts here I'm guessing that less than 0.75 g/kg may not be enough to do the trick, and 1.5 g/kg or more generally does do the trick.

[tapiash]

Thanks so much for sharing. My son first IVIG dose was 2g. The next one will be 2g as well. Our doctor does not want us to do the IVIG while on steroids. Since we already have it scheduled and my doctor lives 100 miles away, I was just going to do it anyway. Do you think that's wrong? The last thing I want is for my son to be more susceptible to infections etc. The reason why he put him back on Pred. is because DS was pretty much symptom free while taking it and then we had IVIG and behaviors came back. (aggression,emotional,irritability). I wonder if some of the behaviors are a result of him being off of the antibiotics. He wont start them again until Monday.

 

I'm so glad to hear your kiddos are showing improvements. How many months have they been receiving them and how long will they continue to have them? All of this is so overwhelming. I try to fix one thing and end up with a whole new set of problems.

[dcmom]

I think maintaining with pred is a very interesting idea. We have done month long tapering bursts, with great success for both of my girls. I often think how perfect life would be if we could do long term pred- I am SO interested.

 

I think it would take a higher dose for your child to become immuno compromised.... I am going to talk to my SIL (pharmacist) about this- will report back if she has anything interesting to say.

 

Please keep us posted.

 

Also, our doc said when we got to the last week of the taper, that there were no side effects at that level- maybe that is the same with your dosing?

[tapiash]

I think maintaining with pred is a very interesting idea. We have done month long tapering bursts, with great success for both of my girls. I often think how perfect life would be if we could do long term pred- I am SO interested.

 

I think it would take a higher dose for your child to become immuno compromised.... I am going to talk to my SIL (pharmacist) about this- will report back if she has anything interesting to say.

 

Please keep us posted.

 

Also, our doc said when we got to the last week of the taper, that there were no side effects at that level- maybe that is the same with your dosing?

 

My son had a great day today. We are on day 2 of the steroid. Im curious to see what tomorrow brings. It's amazing how well my son was dong on the steroid. Has your child had IVIG? Please let me know what your pharmacist has to say about the Pred. Have a great night.

[parents4eyes]

x

Edited September 9, 2010 by parents4eyes

[peglem]

If you use both, how will you assess the effects of the IVIG? You won't know if improvement is because of steroids or IVIG.

[tapiash]

If you use both, how will you assess the effects of the IVIG? You won't know if improvement is because of steroids or IVIG.

 

Which do I do? IVIG makes more sense, right? It doesn't have long term side effects

[peglem]

If you use both, how will you assess the effects of the IVIG? You won't know if improvement is because of steroids or IVIG.

 

Which do I do? IVIG makes more sense, right? It doesn't have long term side effects

I don't know that much about steroids, but I believe it is dangerous to use them too frequently, and you cannot stay on them all the time. My daughter gets IVIG every 4 weeks and does not get side effects at all.

[tapiash]

If you use both, how will you assess the effects of the IVIG? You won't know if improvement is because of steroids or IVIG.

 

Which do I do? IVIG makes more sense, right? It doesn't have long term side effects

I don't know that much about steroids, but I believe it is dangerous to use them too frequently, and you cannot stay on them all the time. My daughter gets IVIG every 4 weeks and does not get side effects at all.

 

Do you pre and post treat with steroids? Have the IVIG's been successful

[Kayanne]

Thanks so much for sharing. My son first IVIG dose was 2g. The next one will be 2g as well. Our doctor does not want us to do the IVIG while on steroids. Since we already have it scheduled and my doctor lives 100 miles away, I was just going to do it anyway. Do you think that's wrong? The last thing I want is for my son to be more susceptible to infections etc. The reason why he put him back on Pred. is because DS was pretty much symptom free while taking it and then we had IVIG and behaviors came back. (aggression,emotional,irritability). I wonder if some of the behaviors are a result of him being off of the antibiotics. He wont start them again until Monday.

 

I'm so glad to hear your kiddos are showing improvements. How many months have they been receiving them and how long will they continue to have them? All of this is so overwhelming. I try to fix one thing and end up with a whole new set of problems.

 

Shirley,

Can you clarify this? The way I am understanding it is...your doc doesn't want you to use the prednisone yet, and you want to do it anyway? Personally, I think I would listen to the doctor.

 

I think I am probably wrong in this assumption (because of reading other posts by patient's of Dr. but...if prednisone suppresses your immune system, and you are trying to "reboot" the immune system with high dose IVIG....aren't they kind of contra-indicated?

 

I sent you a private message. I highly recommend NOT to do the prednisone for anything other than a short one-time burst. The risks of prednisone especially with children is far too costly. Long-term health risks are inevitable.

 

parents4eyes,

Can you clarify "short one-time burst"? I don't think anyone will dispute the side effects of steroids after about a month of use. However, for us, we had great success (so far twice) with a month-long, tapering course with approx 8 months in between each treatment---I was told there really aren't any long-term effects of pred with this type of use.

 

Can you point me in a direction that will educate me on the Long-term health risks of this type of use? I googled, and couldn't find much in this area...

 

As for 20mg 2x week indefinitely that Shirley's doc is recommending...I would have fears of long term side effects then

 

Thanks!

[tapiash]

Thanks so much for sharing. My son first IVIG dose was 2g. The next one will be 2g as well. Our doctor does not want us to do the IVIG while on steroids. Since we already have it scheduled and my doctor lives 100 miles away, I was just going to do it anyway. Do you think that's wrong? The last thing I want is for my son to be more susceptible to infections etc. The reason why he put him back on Pred. is because DS was pretty much symptom free while taking it and then we had IVIG and behaviors came back. (aggression,emotional,irritability). I wonder if some of the behaviors are a result of him being off of the antibiotics. He wont start them again until Monday.

 

I'm so glad to hear your kiddos are showing improvements. How many months have they been receiving them and how long will they continue to have them? All of this is so overwhelming. I try to fix one thing and end up with a whole new set of problems.

 

Shirley,

Can you clarify this? The way I am understanding it is...your doc doesn't want you to use the prednisone yet, and you want to do it anyway? Personally, I think I would listen to the doctor.

 

I think I am probably wrong in this assumption (because of reading other posts by patient's of Dr. but...if prednisone suppresses your immune system, and you are trying to "reboot" the immune system with high dose IVIG....aren't they kind of contra-indicated?

 

I sent you a private message. I highly recommend NOT to do the prednisone for anything other than a short one-time burst. The risks of prednisone especially with children is far too costly. Long-term health risks are inevitable.

 

parents4eyes,

Can you clarify "short one-time burst"? I don't think anyone will dispute the side effects of steroids after about a month of use. However, for us, we had great success (so far twice) with a month-long, tapering course with approx 8 months in between each treatment---I was told there really aren't any long-term effects of pred with this type of use.

 

Can you point me in a direction that will educate me on the Long-term health risks of this type of use? I googled, and couldn't find much in this area...

 

As for 20mg 2x week indefinitely that Shirley's doc is recommending...I would have fears of long term side effects then

 

Thanks!

 

My doctor wants me to use the steroids again and I dont. We have an IVIG scheduled so I wasn't sure if I should keep my appointment. The doctor suggested suggested for me not to do both. I hate that my doctor is so far away. when we had our consult, I just wanted to talk about IVIG. He told me we should see immediate results like we di with the steroid and thats when he said we would use the steroid for maintaining. We have had wonderful results on Steroids but I don't like the idea of using them again. We have only been off of them a month. Our IVIG is scheduled for Monday. I agree with the contradiction. My son starts school soon and I need him better.

[peglem]

If you use both, how will you assess the effects of the IVIG? You won't know if improvement is because of steroids or IVIG.

 

Which do I do? IVIG makes more sense, right? It doesn't have long term side effects

I don't know that much about steroids, but I believe it is dangerous to use them too frequently, and you cannot stay on them all the time. My daughter gets IVIG every 4 weeks and does not get side effects at all.

 

Do you pre and post treat with steroids? Have the IVIG's been successful

In March and April we did our 1st 2 IVIGs- they were both a low dose, <0.5g/kg. They made her worse and after the second one she was REALLY bad (enuresis back, call-the-exorcist rages, just out of freaking control)! So her pediatrician did give me a 5 day burst, and we did 14days of rifampin/aug. as well. Then in May, June, July we did the higher dose IVIG (1.5g/kg) and while I'm not ready to give up the zithromax yet(500mg every other day), she is much improved. We only pre and post treat with ibuprofen and make sure she gets plenty of water. Benedril has not been a good drug for her, so we don't do that.