To steroid or not to steroid?

[keeptrying]

I am at a standstill and need to move forward. All the tests that my dd9 has taken still put her in a "gray area". Nothing stands out really. Lyme, myco, immune complexes, comprehensive blood, stool, saliva, you name it. The only thing we have is a camK score of 164 which points to Pandas (or does it really?). Abx did nothing. The next logical step is steroid burst. My fears and concerns are:

1. If TS and not PANDAS will a 5 day course exacerbate tics or cause more harm than good?

2. If no response from burst does that mean no response to IVIG? Recently heard that that is not necessarily true - anyone with experience like that?

 

I have had experienced doctors tell me that the burst should not cause a problem. I have had many here on this board say they had good experience with steroids. BUT I AM TERRIFIED to give them to her. My problem I get it. I trust those that have said to do it, I just get so consumed with fear/worry/what if's that I can not seem to move forward.

 

Any advice?

[thereishope]

Has your child ever had a steroid for anything else...croup, poison ivy? How does your child react to Ibuprofen? Ultimately, it is your child and if you don't feel comfortable doing a steroid burst, then don't. As for antibiotics, which ones have you tried?

[Kayanne]

I am at a standstill and need to move forward. All the tests that my dd9 has taken still put her in a "gray area". Nothing stands out really. Lyme, myco, immune complexes, comprehensive blood, stool, saliva, you name it. The only thing we have is a camK score of 164 which points to Pandas (or does it really?). Abx did nothing. The next logical step is steroid burst. My fears and concerns are:

1. If TS and not PANDAS will a 5 day course exacerbate tics or cause more harm than good?

2. If no response from burst does that mean no response to IVIG? Recently heard that that is not necessarily true - anyone with experience like that?

 

I have had experienced doctors tell me that the burst should not cause a problem. I have had many here on this board say they had good experience with steroids. BUT I AM TERRIFIED to give them to her. My problem I get it. I trust those that have said to do it, I just get so consumed with fear/worry/what if's that I can not seem to move forward.

 

Any advice?

 

I am a strong believer in following your gut...if your are terrified to try something, then that is your answer.

[SarahJane]

We did a 5-day burst to try to get relief from exacerbation symptoms. We thought we'd hear the birds singing & see the clouds part & feel the cool breeze on our skin. Turns out, we just didn't get rages for a few days & ds slept in his own bed. He sat thru a play at the children's theater. And I started planning more outings because he was doing so well. Now...all this we realized in retrospect while we were waiting on the birds/clouds/breeze. If we hadn't done the 'roids then maybe things would have gotten worse during that time...who knows. Btw, Dr. K didn't recommend the steroid burst for dx purposes as he was already 95-100% sure PANDAS from a clinical dx standpoint. And we didn't do abx because we were already seeing them fail. We requested them only for some relief. We just did IVIG, which if abx isn't working, is about all that's left. So far, so good...but it's only been 3 days.

 

Have you consulted with one of the experts? (Sorry I don't know your history.) If not, do that. If PANDAS is confirmed as a clinical dx, then let them decide what to do & help guide you. I know some have said they had complete relief with steroids or they were lucky enough that it bumped the kid into remission. We had just a few good days & some symptomatic relief...nothing earth shattering.

 

Good Luck!

[PhillyPA]

I honestly don't understand the 5 day burst. That seems pointless.

 

For us, a month long steroid taper in my older son, who was 7 at the time, did wonderful things. The first few days were rough and then it was great.

 

My second son got pandas at age 6, we caught it right away and he was put on a month long steroid taper and antibiotics. He was "cured" after three weeks. I feel the steroids had a lot to do with it.

 

All that being said, both my boys responded positively to antibiotics. Augmentin.

[thereishope]

In some kids, a 5 day helps. It's different for each child. It may be a matter of timing in relation to onset, severity, etc. A 5 day burst helped my son.

 

I honestly don't understand the 5 day burst. That seems pointless.

 

Edited November 23, 2010 by Vickie

[keeptrying]

In some kids, a 5 day helps. It's different for each child. It may be a matter of timing in relation to onset, severity, etc. A 5 day burst helped my son.

 

I honestly don't understand the 5 day burst. That seems pointless.

 

This is what worries me the most, my child has had symptoms for 5 yrs. I wonder if a burst can even do anything at this point? Could ivig? I understand that it is worth a try however I fear the outcome as most of us do. Many have told me it is worth a try, but could we possibly make some of our kids worse by messing with them so much? It seems most success stories come from kids who have had symptoms for months, possibly a few years, but 5?

[butterflymom]

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Edited February 2, 2016 by tampicc

[dcmom]

Suggestion

 

after the burst, use motrin for a week to avoid any rebound inflammation

[thereishope]

I don't think a 5 day course of steroids would really mess anything up. I don't even know if it would weaken the immune system with only 5 days. A month of steroids with a taper is a bigger deal, in my opinion. I have read on here, mainly from Chemar, how her husband (who has TS) did not react well to steroids. The steroid he was given was not for the same reason as on the PANDAS forum...I don't recall the reason. Because of that, I can totally understand be nervous and cautious with steroids when you are unsure of the diagnosis.

 

Like I asked earlier in this thread, have you tried Ibuprofen at all and what results, if any, have you seen from that?

 

I don't know if it has been mentioned on this thread yet, but for some kids, even if they have a positive result, it coupld be temporary. That's something to weigh as well.

 

Also, there's no cut off where a PANDAS kid becomes a lost cause. Even at 5 years past onset, I'd fight to help.

 

You're doing the right thing asking these questions. You need to feel comfortable with what ever decision you make.

 

 

In some kids, a 5 day helps. It's different for each child. It may be a matter of timing in relation to onset, severity, etc. A 5 day burst helped my son.

 

I honestly don't understand the 5 day burst. That seems pointless.

 

This is what worries me the most, my child has had symptoms for 5 yrs. I wonder if a burst can even do anything at this point? Could ivig? I understand that it is worth a try however I fear the outcome as most of us do. Many have told me it is worth a try, but could we possibly make some of our kids worse by messing with them so much? It seems most success stories come from kids who have had symptoms for months, possibly a few years, but 5?

[keeptrying]

I don't think a 5 day course of steroids would really mess anything up. I don't even know if it would weaken the immune system with only 5 days. A month of steroids with a taper is a bigger deal, in my opinion. I have read on here, mainly from Chemar, how her husband (who has TS) did not react well to steroids. The steroid he was given was not for the same reason as on the PANDAS forum...I don't recall the reason. Because of that, I can totally understand be nervous and cautious with steroids when you are unsure of the diagnosis.

 

Like I asked earlier in this thread, have you tried Ibuprofen at all and what results, if any, have you seen from that?

 

I don't know if it has been mentioned on this thread yet, but for some kids, even if they have a positive result, it coupld be temporary. That's something to weigh as well.

 

Also, there's no cut off where a PANDAS kid becomes a lost cause. Even at 5 years past onset, I'd fight to help.

 

You're doing the right thing asking these questions. You need to feel comfortable with what ever decision you make.

 

 

In some kids, a 5 day helps. It's different for each child. It may be a matter of timing in relation to onset, severity, etc. A 5 day burst helped my son.

 

I honestly don't understand the 5 day burst. That seems pointless.

 

This is what worries me the most, my child has had symptoms for 5 yrs. I wonder if a burst can even do anything at this point? Could ivig? I understand that it is worth a try however I fear the outcome as most of us do. Many have told me it is worth a try, but could we possibly make some of our kids worse by messing with them so much? It seems most success stories come from kids who have had symptoms for months, possibly a few years, but 5?

Thanks for this.

 

I appreciate the advice so much. Regarding the ibuprofen - I have given it to her once or twice and never saw a reduction in her tics. I did only give one dose though - wondering if I should have done more than one dose before stopping? Hope this is not a dumb question, but is Motrin/Ibuprofen different in anyway? I read some use one or the other - they both reduce inflammation so it should not make a difference correct?

[thereishope]

Motrin and Ibuprofen are the same thing. Motrin is just a brand name. I give my son generic. When choosing one, pick one without dye in it too. fyi...my son did not respond to Ibuprofen when in the midst of an exacerbation, but he did get relief when it was a non-strep trigger. Failure to see improvement with Ibuprofen does not rule out PANDAS in any way. But, if you do see an improvement, it an indicator that possible inflammation is occuring.

Edited November 23, 2010 by Vickie

[KaraM]

I don't have any experience with steroids to write about - but I think I've read that steroids can make things worse if Lyme Disease is involved. Can anyone confirm that theory (don't have the time to go searching at the moment).

 

I know Lyme has not bee diagnosed in your child's case. Has it been ruled out completely?

[LNN]

I don't have any experience with steroids to write about - but I think I've read that steroids can make things worse if Lyme Disease is involved. Can anyone confirm that theory (don't have the time to go searching at the moment).

 

I asked our LLMD about this. I had always dismissed lyme because DS responded amazingly well to 3-4 week steroid tapers. I figured if lyme, his symptoms would get worse because the Lyme would have a field day. The LLMD said a month of prednisone isn't considered "long term" and that if the patient was feeling really lousy from Lyme symptoms, the prednisone would bring temporary but significant relief from the pain, so it would feel like it was working. With Lyme, the prednisone wouldn't do significant harm if only used for a few weeks (tho if you know you have Lyme, prednisone is avoided - the LLMDs use anitoxidants to bring relief instead).

 

So it's not something you'd use if you have confirmed Lyme, but it's not going to dramatically set you back if only used for a short time, especially a 5 day burst. At least that was his take on it.

[butterflymom]

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Edited February 2, 2016 by tampicc