steroid burst then ivig

[7upMom]

Wondering if I could get some theories or input on if ivig may have better results following a steroid burst??

Does it make a difference on the effectiveness of the ivig if a steroid burst was done ahead of the ivig or not??

Same question just asked two different ways ( :

[sf_mom]

The steroid burst Dr. K uses is very low dose and is only used as a diagnostic tool to determine auto-immune. Skipping burst will not help or hurt outcome of IVIG.

 

-Wendy

 

Wondering if I could get some theories or input on if ivig may have better results following a steroid burst??

Does it make a difference on the effectiveness of the ivig if a steroid burst was done ahead of the ivig or not??

Same question just asked two different ways ( :

[7upMom]

Do you continue with antibiotic while doing the steroid burst?

[Iowadawn]

Do you continue with antibiotic while doing the steroid burst?

 

 

I believe we continued the abx he was on while on the steroid burst. Only the psych drugs were removed. How is your boy holding off the medications? Any closer to IVIG? Our second IVIG is scheduled for 17/18. I am totally perplexed by recent titer results on the family. We have anti DNase B's in the 5000-7000. Yeah, all those 0's are correct. Dr.K & Dr.C each have an email in their inboxes. Sorry, jumped topics. Dawn

[T_Mom]

The steroid burst Dr. K uses is very low dose and is only used as a diagnostic tool to determine auto-immune. Skipping burst will not help or hurt outcome of IVIG.

 

-Wendy

 

Hi, This has nothing to do with 7upmom's question, but Wendy, when we followed Dr K's advice for a steroid burst it was not considered low dose--it was definitely a high dose, intense one-week treatment.

Best--TMom.

[thereishope]

If you do a steroid burst definitely stay on antibiotics! A steroid can lower the immune system. Even if it's a 5 day...stay on antibitics.

[Worried_Dad]

Yep, when we did the 5-day prednisone burst per Dr. K, we were most definitely instructed to stay on the antibiotics. At that time, it was a full treatment dose of augmentin.

 

 

If you do a steroid burst definitely stay on antibiotics! A steroid can lower the immune system. Even if it's a 5 day...stay on antibitics.

[7upMom]

He is doing better being off the ssri's , that was one of the best things we did for him, a part of his personality even came back that we didn't realize had been missing. We have not seen a rage in a week, but its been touch and go some days-but holding off. The last couple days have been really teetering up and down though but he is presenting with URI again.

We won't be able to schedule the ivig until next week when we know how our appraisal for refinancing turned out.

Dawn- I am so happy for you that you are doing the ivig this week, I'm sure every day has felt like forever until it got here!!!

 

So noone thinks that the steroid has any effect on how the ivig works as an end result?? Only a diagnostic tool? But I hear people talk about how they do the steroid burst and then antibiotics as a treatment in itself---- So just theorizing that wouldn't it help reset anything going on before the ivig and make that work better? or am I completely off on that?

[sf_mom]

TMom. Let me clarify, from an early post of 7upmom's stated that they were going to skip the 'diagnostic' steroid burst with Dr. K due to her son's urgent situation and requiring immediate IVIG. I assumed her question was in relationship to the earlier post as to if the 'diagnostic' steroid burst would or wouldn't be beneficial to IVIG with Dr. K that they are preparing to schedule.

 

The steroid burst Dr. K recommended for our son was 15 mg/5 ml TWO teaspoons (10 ml) every morning for FIVE CONSECUTIVE DAYS.. This is a much lower dose then is used for the month long steroids used for other auto-immune illnesses. I've known some to be as high as 40 m.l. per day with tapers and some much, much higher. Dr. K dosage is something similar to what would be prescribed for croup for my child's size, etc. AND, as you Dr. K does not typically prescribe steroid 'as a treatmet' only as a diagnostic tool.

 

Hopefully that helps.

 

 

 

 

 

 

The steroid burst Dr. K uses is very low dose and is only used as a diagnostic tool to determine auto-immune. Skipping burst will not help or hurt outcome of IVIG.

 

-Wendy

 

Hi, This has nothing to do with 7upmom's question, but Wendy, when we followed Dr K's advice for a steroid burst it was not considered low dose--it was definitely a high dose, intense one-week treatment.

Best--TMom.

[thereishope]

I'm the one who mentined to 7up Mom that I thought I once read some theorize that if a child has a steroid burst, the IVIG may have better results. I suggested starting a thread about it since I couldn't fully remember if that was a possibility. I am glad you started it! So, I guess it doesn't matter.

 

Now, a steroid burst did help my son with recovery. BUT it should be noted that he received it very early in the exacerbation and that is why I think it helped in that way. In his second strep triggered exacerbation, he started a burst 5 days after the exacerbation started.

[7upMom]

Well, it was worth a shot to find out if it worked that way or not. The explanation of the low dose for the diagnostic tool and the high dose for treatment makes sense though, I guess I never thought of them being different doses, so that explains that mystery.

We are back to rages again tonight, very odd behaviors throughout the day also ) : , emotional regression is prob that of a 4-5 y/o- this is all just very confusing and frustrating.

[T_Mom]

Hi Wendy--Thanks for the reply.

I just want to clarify for anyone who is new to the board, that when we consulted with Dr. K he recommended a 5-Day high dose of steroids to essentially see if our child would get better. He uses a high dose burst for, as you said, essentially a diagnostic "test" of Pandas (basically inflammation.)

 

This high-dose burst was also recommended by another neurologist who administered the dose.

TMom

 

 

TMom. Let me clarify, from an early post of 7upmom's stated that they were going to skip the 'diagnostic' steroid burst with Dr. K due to her son's urgent situation and requiring immediate IVIG. I assumed her question was in relationship to the earlier post as to if the 'diagnostic' steroid burst would or wouldn't be beneficial to IVIG with Dr. K that they are preparing to schedule.

 

The steroid burst Dr. K recommended for our son was 15 mg/5 ml TWO teaspoons (10 ml) every morning for FIVE CONSECUTIVE DAYS.. This is a much lower dose then is used for the month long steroids used for other auto-immune illnesses. I've known some to be as high as 40 m.l. per day with tapers and some much, much higher. Dr. K dosage is something similar to what would be prescribed for croup for my child's size, etc. AND, as you Dr. K does not typically prescribe steroid 'as a treatmet' only as a diagnostic tool.

 

Hopefully that helps.

 

 

The steroid burst Dr. K uses is very low dose and is only used as a diagnostic tool to determine auto-immune. Skipping burst will not help or hurt outcome of IVIG.

 

-Wendy

 

Hi, This has nothing to do with 7upmom's question, but Wendy, when we followed Dr K's advice for a steroid burst it was not considered low dose--it was definitely a high dose, intense one-week treatment.

Best--TMom.

[sf_mom]

I'm curious as to what your son's dose and what is considered high? Are you saying the dose amount was similar to my son's for size and weight and that is considered high?

 

I've talk to Dr. K very specifically about steroids due its use with Kawasaki's treatment and his use of it as a diagnostic tool and my understanding is its was always a minimal amount but who knows maybe your son was prescribed a different dose? As he does look at each individual case history and treats accordingly. My father-in-law is also a Dr. and we went over the specific of steroids prescribed too and length/dose is a fairly typical amount and used frequently so I'm a little confused. Its even used in treatment of poison ivy.

 

If your just frustrated by my post about the term 'high' verses 'low'..... you and I can agree to disagree. Nobody should take anyone's advice over the internet and consult with a Dr. if there is a concern over the use of steroids. What is typically considered low and what is considered high and what steroids are typically prescribed with regards to treatment.

 

 

 

 

 

 

 

Hi Wendy--Thanks for the reply.

I just want to clarify for anyone who is new to the board, that when we consulted with Dr. K he recommended a 5-Day high dose of steroids to essentially see if our child would get better. He uses a high dose burst for, as you said, essentially a diagnostic "test" of Pandas (basically inflammation.)

 

This high-dose burst was also recommended by another neurologist who administered the dose.

TMom

 

 

TMom. Let me clarify, from an early post of 7upmom's stated that they were going to skip the 'diagnostic' steroid burst with Dr. K due to her son's urgent situation and requiring immediate IVIG. I assumed her question was in relationship to the earlier post as to if the 'diagnostic' steroid burst would or wouldn't be beneficial to IVIG with Dr. K that they are preparing to schedule.

 

The steroid burst Dr. K recommended for our son was 15 mg/5 ml TWO teaspoons (10 ml) every morning for FIVE CONSECUTIVE DAYS.. This is a much lower dose then is used for the month long steroids used for other auto-immune illnesses. I've known some to be as high as 40 m.l. per day with tapers and some much, much higher. Dr. K dosage is something similar to what would be prescribed for croup for my child's size, etc. AND, as you Dr. K does not typically prescribe steroid 'as a treatmet' only as a diagnostic tool.

 

Hopefully that helps.

 

 

The steroid burst Dr. K uses is very low dose and is only used as a diagnostic tool to determine auto-immune. Skipping burst will not help or hurt outcome of IVIG.

 

-Wendy

 

Hi, This has nothing to do with 7upmom's question, but Wendy, when we followed Dr K's advice for a steroid burst it was not considered low dose--it was definitely a high dose, intense one-week treatment.

Best--TMom.

[thereishope]

7up Mom....are you giving your son Ibuprofen? Are the rages tolerable? Let's all hope it is a bump and he will wake up better. Have you ruled out strep in family members yet?

[T_Mom]

Hi SFMom--

Thanks for your reply.

 

When my d was in the midst of a Pandas severe reaction '08 (crippling OCD and mild tics) we did a steroid burst (as Dr K called it--which seemed to indicate to me a "burst" effect, quick/relatively strong.)

 

The dose for the so-called "steroid burst" was (Prednisone 1 mg/kg of body weight as a single AM dose for five consecutive days). He advised that we watch her reaction to it carefully between day 3 and day 10. Important to note: in children 10 years or older it was noted that response to steroids may be delayed up to 3 - 4 weeks according to Dr K. We understood that a positive response (an objective and significant temporary reduction in her core symptoms) would further confirm the diagnosis. It did!

 

 

 

 

 

I'm curious as to what your son's dose and what is considered high? Are you saying the dose amount was similar to my son's for size and weight and that is considered high?

 

I've talk to Dr. K very specifically about steroids due its use with Kawasaki's treatment and his use of it as a diagnostic tool and my understanding is its was always a minimal amount but who knows maybe your son was prescribed a different dose? As he does look at each individual case history and treats accordingly. My father-in-law is also a Dr. and we went over the specific of steroids prescribed too and length/dose is a fairly typical amount and used frequently so I'm a little confused. Its even used in treatment of poison ivy.

 

If your just frustrated by my post about the term 'high' verses 'low'..... you and I can agree to disagree. Nobody should take anyone's advice over the internet and consult with a Dr. if there is a concern over the use of steroids. What is typically considered low and what is considered high and what steroids are typically prescribed with regards to treatment.

 

 

 

 

 

 

 

Hi Wendy--Thanks for the reply.

I just want to clarify for anyone who is new to the board, that when we consulted with Dr. K he recommended a 5-Day high dose of steroids to essentially see if our child would get better. He uses a high dose burst for, as you said, essentially a diagnostic "test" of Pandas (basically inflammation.)

 

This high-dose burst was also recommended by another neurologist who administered the dose.

TMom

 

 

TMom. Let me clarify, from an early post of 7upmom's stated that they were going to skip the 'diagnostic' steroid burst with Dr. K due to her son's urgent situation and requiring immediate IVIG. I assumed her question was in relationship to the earlier post as to if the 'diagnostic' steroid burst would or wouldn't be beneficial to IVIG with Dr. K that they are preparing to schedule.

 

The steroid burst Dr. K recommended for our son was 15 mg/5 ml TWO teaspoons (10 ml) every morning for FIVE CONSECUTIVE DAYS.. This is a much lower dose then is used for the month long steroids used for other auto-immune illnesses. I've known some to be as high as 40 m.l. per day with tapers and some much, much higher. Dr. K dosage is something similar to what would be prescribed for croup for my child's size, etc. AND, as you Dr. K does not typically prescribe steroid 'as a treatmet' only as a diagnostic tool.

 

Hopefully that helps.

 

 

The steroid burst Dr. K uses is very low dose and is only used as a diagnostic tool to determine auto-immune. Skipping burst will not help or hurt outcome of IVIG.

 

-Wendy

 

Hi, This has nothing to do with 7upmom's question, but Wendy, when we followed Dr K's advice for a steroid burst it was not considered low dose--it was definitely a high dose, intense one-week treatment.

Best--TMom.